Copyright © 2013 Javad Hekmat-panah M.D.

All rights reserved.

ISBN-10: 1481252178
EAN-13: 9781481252171
eBook ISBN: 978-1-63002-966-1

Library of Congress Control Number: 2012923682

CreateSpace Independent Publishing Platform:
North Charleston, South Carolina
 Preface

This book was written based on over forty years of experience in surgical and non-
surgical treatments and management of patients, together with a detailed review of
pertinent subjects in the literature. Although I studied the related issues in law, I am not
a lawyer, nor is there a claim for being a professional ethicist, despite having had a
fellowship in medical ethics with continued interest and involvement in it.

The idea for this book originated about seven years ago when I was invited by the
education committee of the Society of Neurological Surgeons (SNS) and the American
Association of Neurological Surgeons (AANS) to prepare a narrated module on
“Communication with Patients.” The module is on the AANS website, among the
AANS/SNS Neurosurgical Online Sessions. This book is considerably expanded about
issues related to communication needs of patients, together with additional chapters on
communication on behalf of patients.

The book is a guideline, essentially indicating what needs to be communicated in doctor–

patient relationships and why. Although suggestions are made about what and how to
communicate, for the most part the style of communication is for each person to choose
the way he or she is comfortable with and in a manner that suits the patient best.
 Acknowledgement

I wish to thank Dr. Jeffrey Matthews, chairman of the Department of Surgery; Dr. Holly J.
Humphrey, dean for medical education; Julie Palmer, JD, lecturer in law; and Ann Dudley
Goldblatt, assistant director for clinical ethics in the Department of Medicine and The Law
School, all at The University of Chicago; and attorney Joseph A. Camarra, for reviewing
my manuscript. Each of them made valuable and helpful comments.

I appreciate very much my wife Lyra, and Katharine Lion, my research specialist, for
frequent reviews of the book and for their thoughtful suggestions.

I feel indebted to Dr. Mark Siegler, the director of The MacLean Center for Clinical Medical
Ethics, for having established a unique center for clinical ethics and fellowship at The
University of Chicago. I feel grateful and honored to have been a fellow and now a
member of the faculty there.
This book is dedicated to my wife, Lyra,
And
To the memory of my mother
For
Their boundless compassion
 Table of contents

Introduction

Chapter 1: Doctor–patient Communication and the Law

Communication and the right to know
Autonomy
Consumer bill of rights and responsibilities
Paternalism

Chapter 2: Law Is Not Enough

What is “ethical”?
Key ethical principles
° Autonomy
° Beneficence
° Nonmaleficence
° Justice
Ethical standards in medicine
What is a profession?
Professionalism
“Truth”
Compassion
Sincere attitude
Professional standards

Chapter 3: Stages of Communication

Stage I - Communication and making an appointment
Stage II - Communication during the first visit
° First comment
° First question
° Timing of the questions
° Listening
° Communication during the visit
° Effective communication
° Words
° Confidentiality
° Withholding information by patient
° What do patients want to know?
° What do doctors want to know?
° Options
° Decisions and recommendations
° Communication and computer
Stage III - Acceptance to treat
° Inside the hospital
° Want to know and do not want to know
° Fear of knowing
° Timing of communication
° Communication after operation
° Expecting the patient to communicate

Chapter 4: Consent
Informed consent
Hidden fears
Experience versus knowledge
Autonomy versus paternalism
Compassion and sincerity versus paternalism
Unintended request
Autonomy and risk-taking
Communication with a doctor as patient

Chapter 5: Communicating Bad News

Patient’s response to bad news
Denial
Communication with a patient in denial
Communication with an angry patient
Communication and naked truth
Communicating life expectancy
Preparing the patient for a potentially serious or a malignant disease
Communication by the leader of the team
Deserting the patient with bad news
Communicating errors

Chapter 6: Communication with Family on Behalf of the Patient

Communication with the family about the patient’s operation
Communication with parents of sick children
° During infancy and early childhood
° During pre-adolescence
° During adolescence
Parents suspected of negligence or abuse of children
° Communication with governmental authorities
° Communication as a witness in the court for child abuse
Communicating with family of patient with serious illness
ICU mortality
Predicting the outcome
 Conflict among the staff
Finding the right person to communicate with
Next of kin and surrogate
Preparing the family for patient’s discharge or for terminal event
Communication with nurses
Communication with colleagues to seek medical consultation or to make referral

Chapter 7: Communication with Lawyers about Patients

Fact witness
Expert witness
Doctor as defendant
Discovery deposition
Torts
Crimes
Reasonable medical certainty
Beyond reasonable doubt
Truth, the whole truth, and nothing but the truth
Lawyers’ responsibility
Winning, losing, and words
What does the lawyer want to know?
Does a physician have to communicate with lawyers as expert witness?

Chapter 8: Difficult Communication

Health-care difficulties
“Difficult” doctor
“Difficult” patients
Malingering
Factitious disorder
Feigning
Injury exaggeration
° Period I
° Period II
° Period III
Multiple organ symptoms
Unreasonable expectations

Chapter 9: Communication and Cultural Differences

Bias and prejudice
Cultural views and family participation
Disturbing thoughts
Family participation and cultural differences

Chapter 10: Communication with Patients Seeking Alternative and Complementary

Treatments
What are alternative treatments?
Complementary and alternative medicine (CAM)
The National Center for Complementary and Alternative Medicine (NCCAM)
Physicians’ responsibility and alternative treatments

Conclusion

Bibliography
 INTRODUCTION

When we become ill, especially with a disease that threatens our ability to function or our
lives, we become dependent on others, become vulnerable to suggestions, and become
sensitive to comments. Health professionals, family, friends, members of the clergy,
and/or lawyers could easily influence our decisions. Hope, encouragement, or support
gives us comfort and consoles our minds. But we need information, the appropriate
information that helps us make decisions that are right for us as individuals and correct
for our illness. We need information about the illness we have, about the treatment
needed, and about the outcome. To avoid confusion and obstacles in making decisions,
we do not need information about every condition that a disease can cause or every
treatment available that would not apply to us.

Today, many individuals participate directly or indirectly in giving medical information

that can affect the outcome of the illness. Some are trained in a specific medical
profession; others are members of support groups, administrations, insurance companies,
the legal profession, pharmaceutical companies, and/or the government. Furthermore,
many patients seek information through the Internet or via the news. As it is for the
physician, anyone whose word can influence a patient’s decision has the moral obligation
to make statements or give advice that is based on knowledge believed to be true.

Some may underestimate the influence their words could have on a patient. A person
threatened by harm may not be able to discriminate between varied information
received, or may not be in a position to think clearly to choose an appropriate option.
One may take anyone’s soothing suggestion instead of an appropriate one and take any
path to escape the threat. On one occasion, a patient of mine with back pain, who was in
the process of evaluation for cancer, suddenly insisted on being discharged from the
hospital, requiring some convincing to stay. The housekeeper had brought him some
cocoa butter that he applied to his back and he had felt better; he thought it was all that
was needed. Unfortunately, further studies did not support his belief.

With constant advances in medicine, new treatment options develop that change our
health and our longevity. Despite being based on the reasonable scientific knowledge of
the time, some treatments are associated with complications that were not apparent or
foreseen at the time. What we hear or learn today may not be valid for tomorrow.
Furthermore, based on our ages, our attitudes, and our outlooks on life, we may or may
not desire certain options. While we have the autonomy to choose, to refuse, or to share
making decisions with our caregivers, we need appropriate and up-to-date information
based on facts.
Yet factual medical information is hard to assess. To establish a medical fact, one needs
to search a good deal and have an appropriate medical or scientific background. Never
before did patients have so much access to information through the Internet and through
general news. Patients need information that is true and suits their illness; for them to
search and to evaluate facts is not an easy task. That is why the conveyance of medical
news contains the obligation of having enough knowledge to assess what may or may not
be a fact. If a doctor’s information were erroneous, one patient would suffer; that is bad
enough. If the error is conveyed through general news, many patients may suffer.

Advances in technology have considerably improved diagnosis. A condition that took days
to diagnose can now often be done within hours, enabling the doctor to know most of
what is needed to recommend treatment. That, in an unwitting way, has shortened the
period needed for a relationship to develop. The very duration and process of taking the
history, physically examining the patient, and obtaining data for diagnosis create
interpersonal rapport and enhance doctor–patient relationships and mutual
communication. Today, it is not unusual that a patient visits a specialist with MRI and
diagnosis in hand creating a desire to discuss what is to be done before an amicable
doctor–patient relationship can be developed.

This book was written in an attempt to emphasize that communication is an essential

part, not an adjunct to treatment in the doctor–patient relationship. For the doctor–
patient relationship to work, communication needs to be based on ethical standards,
truth, compassion, and a sincere attitude by both the doctor and the patient. Within ten
chapters, the book deals with the fundamentals of what the patient needs to know to
reasonably be able to participate in making decisions autonomously and of what the
doctor needs to communicate with and on behalf of the patient.

The term “doctor” in this book may include all those who on his behalf manage or treat
the patient’s illness. Similarly, the term “patient” may include all those who interact on
behalf of the patient. A good part of the doctor–patient relationship is to communicate
with others on behalf of the patient, e.g., with the family, other professionals, lawyers,
and with some official members in the government. These are all demanding and time-
consuming yet are needed as parts of management of patients. There is also the need
and likely the responsibility for doctors to participate in and to communicate about issues
related to public health that can benefit patients in general. There are issues like
protecting children from abuse, communicating for those who cannot communicate on
their own behalf, being a witness in court, or to discuss unnecessary treatments that take
away resources from those who need that most. In a concise way, but with adequate
details, these issues are discussed in related chapters.

The book is based on over forty years of experience in diagnosis, treatment, operations,
and management of adults and children in neurosurgery, neuropsychiatry, trauma, and
cancer. It is also based on the review of over five hundred articles and related subjects in
books and on the Internet. Of them, over one hundred references are included for those
who may wish to have broader information on a specific subject. My hope is that this
book is of help to members of the medical profession: medical students, residents,
nurses, and those in allied medical professions who provide care to patients.
Furthermore, communication with patients is not limited to the domain of the medical
profession alone. For others who are not in the medical profession, the task can be
harder, especially when the illness is serious. For them, too, I trust this book makes the
task easier.

Treatments that require surgery naturally cause patients to have varied degrees of fear,
trepidation, dilemma, and dealing with the unknown. Such emotional feelings are at
times more stressful than the operation itself. Pointless details and enumeration of every
possible rare complication can frighten the patient; thereby, the patient may refuse an
appropriate operation. The same can occur in patients who have cancer, terminal
disease, or a life-threatening condition requiring chemotherapy, radiation therapy, and/or
other invasive treatments. Frequent observations indicate that so often ethical or legal
issues stem not so much from the doctor’s lack of communication but from inadequate,
poor, or erroneous communication.

On the other hand, social and legal expectations today have also created concern or
trepidation in many physicians to the extent that it hinders their desire to communicate
openly and in a compassionate way, which most physicians would prefer. Instead, the
communication may sound dispassionate or legalistic. Or a physician may enumerate
everything at once, even complications that seldom occur. As a surgeon with interest in
such issues, this author attempts to put the doctor and the patient in each other’s shoes,
hoping to diminish the trepidation. Despite all good intentions and even with appropriate
communication, conflicts can still develop between the doctor and the patient and/or the
family. When that occurs, one needs to consult with related experts in medical ethics and
in law.
The doctor–patient relationship is an essential part of patient care. To be satisfactory, the
relationship has to be based on appropriate professional conduct, mutual trust, and
effective communication. Effective communication is a two-way street and is one that is
appropriate for the patient’s condition. Furthermore, communication is one of the main
responsibilities of professionals to patients, and it is a part of the Consumer Bill of Rights.
Communication is the central part of the doctor–patient relationship by enabling the
physician to come up with a correct diagnosis and treatment options, and enabling the
patient to have a choice in options. It facilitates the process of giving and receiving
medical care.

Today, diagnosis and treatments are often rendered or made possible by a number of
physicians and non-physicians; each has a specific responsibility—some are
administrators of various health-related organizations. In this presentation, the term
doctor may include those who, under his or her direction, participate in communication
and/or in the treatment. It may include interns, residents, nurses, or office staff. The term
patient may include those who, on the patient’s behalf, participate and communicate with
the doctor or seek information. It may include the family, referring physician, person with
power of attorney, Social Security, lawyer, insurance company, or worker-compensation
staff.

Communication and the Right to Know

In January 1908, Mary Schloendorff [1] was admitted to the New York Hospital for some
disorder of the stomach. She had agreed to have an examination under anesthesia with
ether to help identify a lump that had been detected. While she was under anesthesia,
the surgeon removed a fibroid tumor, discovered during the examination. Later, she
developed an infection and gangrene of several fingers that needed amputation.
Believing that that resulted from the operation on the lump, she sued the hospital,
alleging that she had not consented to removal of the lump. After some court battle, in
1914, Justice Benjamin Cardozo wrote, in the Court’s opinion, “Every human being of
adult years and sound mind has a right to determine what shall be done with his own
body.” That established the principle of informed consent.

To give informed consent for treatment, the patient needs information and
communication about the nature of the illness and its outcome with or without treatment.
The patient needs to know about the options, if any, with their potential benefits and
harm. Should the patient consent to the treatment, there still is the need for
communicating during the progress and the outcome of the treatment. The patient may
wish to involve, in various degrees, different members of the family and others in giving
or receiving information; thus, they, too, need appropriate communication.

Autonomy
Autonomy is the freedom to act on one’s own behalf without external force or coercion.
The concept of autonomy is the centerpiece for the rights and dignity of the individual(s).
Immanuel Kant [2] believed it to be “the sole principle of morals.” The rights may be that
of one individual, having personal autonomy, or that of a group or a country. Individuals
may forego or delegate certain rights or personal desires by electing one to act on their
behalf. Today, many patients like to take charge in accepting or refusing medical care
and share the decision-making process with the doctor. We also leave certain decisions to
our representatives or government, such as making decisions for public health in areas
like drugs, water, or food safety.

In certain countries such as the United States, the choice for treatment is considered to
be the patient’s legal right. Unless harmful to others, as in a public health emergency [3],
an adult individual, mentally competent and informed, can refuse a treatment and forgo
its benefit. History indicates what could happen if respect for autonomy is diminished or
neglected. Through greed, paternalism, or even through sincere belief for public good,
abuse and coercion can and will take place in open or in secret.

The patient’s right to choose does not mean that the doctor could give anything that the
patient wants. A part of the doctor’s duty is to offer consultation about what treatment is
potentially beneficial and what is harmful. Despite a clear statement by the Court (Justice
Benjamin Cardozo, 1914), some physicians and researchers ignored the concept of
autonomy for a long time. Up to around four decades ago, certain treatments and
experiments took place that were, morally and legally, unacceptable. Without consent,
some did highly invasive experiments on patients, prisoners, and the disabled.

In a paper published in June 1966, Henry Beecher [4] indicated that in fifty examples of
projects, consent had been mentioned in only two. He cited twenty-two projects in which
there were various ethical problems. For example, definitive treatment was withheld in
109 service men with streptococcal respiratory infection. Instead, a placebo was given,
while benzathine penicillin G was given to others. In the “small group of patients studied,
two cases of acute rheumatic fever and one of acute nephritis developed in the control
patients whereas these complications did not occur among those who received
benzathine penicillin G.” In another experiment, to determine the minimum cerebral
blood flow requirement, in 37 subjects the mean arterial blood pressure was brought
down from 109 to 48 millimeters causing signs of cerebral ischemia. Beecher wrote:

Evidence is at hand that many of the patients…never had the risk satisfactorily
explained to them, and it seems obvious that further, hundreds have not known that
they were the subject of an experiment although grave consequences have been
suffered as a direct result of experiments described here. [4]

David Rothman [5], in his book Strangers at the Bedside, wrote:

The twenty years between the close of World War II and the appearance of Henry
Beecher’s exposé witnessed an extraordinary expansion of human experimentation in
medical research. Long after peace returned, many of the investigators continued to
follow wartime rules. Utilitarian justifications that had flourished under conditions of
combat and conscription persisted, and principles of consent and voluntary participation
were often disregarded.

According to Fred D. Gray, in 1932, the US Public Health Service recruited 623 African-
American men from Macon County, Alabama, to study the effect of untreated syphilis,
The Tuskegee Syphilis Study [6]. The study lasted forty years, and few knew about it.
The patients were told that they had “bad blood,” and even when the treatment with
penicillin was established, the treatment was denied to them. In 1972, the study was
exposed; in 1975, a suit against the government was settled, and, in 1997, President Bill
Clinton welcomed five of the survivors to the White House and, on behalf of the nation,
officially apologized for the experiment.

During the past four decades, the concept of autonomy in patient care has gradually
improved, been respected, and has become mandatory. The Beecher efforts, public
awareness of its rights, general familiarity with illnesses through the news, better
treatments for diseases, and increased litigation each had its influence. Today, for every
treatment, the patient’s agreement is required. Furthermore, the patient needs to
understand, as much as possible, to what he or she agrees.

Consumer Bill of Rights and Responsibilities

On March 26, 1997, President Bill Clinton appointed an Advisory Commission on
Consumer Protection and Quality in the Health Care Industry [7], co-chaired by Donna
Shalala, secretary of the Department of Health and Human Services, and Alexis Herman,
secretary of the Department of Labor. The commission issued its final report in March
1998:
 Consumers have the right to receive accurate, easily understood information and some
require assistance in making informed health care decisions about their health plans,
professionals and facilities.

The Bill of Rights regarding health professionals indicates that:

Consumers should receive upon request the following information on health professionals:

Education, board certification, and recertification status

Names of hospitals where physicians have admitting privileges
Years of practice as a physician and as a specialist if so identified
Experience with performing certain medical or surgical procedures (e.g., volume of
care/services delivered), adjusted for case mix and severity
Consumer satisfaction measures
Clinical quality performance measures
Service performance measures
Accreditation status (if applicable)
Corporate form of the practice (i.e., public or private, gateway.html or for-profit,
ownership and management, sole proprietorship or group practice)
The availability of translation or interpretation services for non-English speakers
and people with communication disabilities
Any cancellation, suspension, or exclusion from participation in federal programs or
sanctions from federal agencies; any suspension or revocation of medical licensure,
federal-controlled substance license, or hospital privileges

Paternalism
In the past, withholding information about a patient’s illness or treatment was not always
disingenuous. As it is still practiced today among certain families, cultures, or groups in
many countries, withholding information, especially about life-threatening conditions, was
based on genuine compassionate feelings. The concept was to protect the patient from
emotional harm, not to benefit others. Today, with a more informed public, the feeling of
the right to know, and the patient’s desire to have a choice and options in treatment,
there is a much more extensive demand for doctor–patient communication. The report by
D. H. Novack and coworkers [8] clearly indicates such a change in attitude. They found
that in 1961, 90 percent of responding physicians indicated a preference for not telling a
cancer patient the diagnosis. In 1997, however, 97 percent of physicians surveyed
indicated a preference for telling a cancer patient his or her diagnosis.

If doctor–patient communication were simply to be based on following the laws, the task
would have been very easy; the doctor explains and enumerates the details of the issues,
respects the patient’s autonomy, and continues with the treatment when consent is
obtained. That kind of communication takes place often between individuals in many
dealings in human relations, such as buying and selling. The transaction is considered to
have been taken between two consenting adults and is likely appropriate. That, however,
is not enough for medicine because when we become ill, we become vulnerable, not only
physically but also emotionally. We do have autonomy but we may not be able to use it
in our best interest or in a way that is compatible with our desire to get better. We do
give consent but we seldom are fully informed, despite a full exposure to the issues. The
doctor is to abstain from paternalism, but to recommend a better choice of treatment is
not necessarily paternalism when the patient’s choice is not medically desirable. These
issues will be discussed in more detail in some of the following chapters.
The law is an important requirement to establish the patient’s right to autonomy, to have
a choice in treatment, and to be able to have shared decision-making ability. Yet the law
is just the minimum requirement. For the doctor–patient relationship to work,
communication needs to be based on an ethical standard, truth, compassion, and a
sincere attitude by both the doctor and the patient. In most failed doctor–patient
relationships, one likely can find a certain degree of shortcoming in one or more of the
above requirements. In addition, it is trust that glues the relationship and makes
communication amicable and workable. Despite all good intentions in communication, it
still is hard for the patients to fully understand what they may have to go through,
especially when medical or surgical issues are complicated and there are multiple options
with different outcomes. The impact of conditions such as cancer and treatment
protocols; back pain and approaches for its management; and disabilities and their
effects are hard to comprehend before experiencing them.

What is “ethical”?
As was indicated earlier, for doctor–patient relationships to work, communication has to
be based on an ethical standard, combined with truth, compassion, and a sincere attitude
by the doctor and the patient. However, what do these terms mean, especially in
communication and medicine? Ethics is the philosophical consideration and discussion of
the morality of actions and behaviors, such as dealing with concepts of good or bad, right
or wrong, morality or immorality, virtue, and altruism. Sometimes the term “ethical” is
used as an abstract term that is admired, desired, and prescribed yet applied loosely with
varied meanings for different peoples, for different reasons, and in different eras. Some
may argue, fight, and even go to war for issues they believe to be ethical.

Let us, for instance, consider a simple term, “good,” probably the most common word we
use in our daily lives. We still need to interpret and define what is meant when something
is called good. Some may even cause much harm, suffering, or hurt to each other mostly
in pursuit of what they call “good.” The bad is often done in the name of good, to
accomplish what is perceived to be “good.”

The notion of good originates not only from intention but also from perception, judgment,
and the source of our belief. We learn what is good or bad, right or wrong (normative
ethics) at our homes first then from our schools, our religious affiliations, and from our
culture. However, we seldom discuss why, for whom, for what reason, and for how long
something is good. The concept becomes a part of our make-up, real or imagined.
Aristotle’s definition of good is that which results in happiness:

…the Good has been rightly defined as ‘that at which all things aim’ [1].

In his book called Ethics [2], Dietrich Bonhoeffer (a religious theologian) saw good
through its relation with God:

The Christian ethics speaks in a quite different sense of the reality which is the origin of
good, for it speaks of the reality of God as the ultimate reality without and within
everything that is.

While Bertrand Russell, a British philosopher, logician, essayist, and social critic, best
known for his work on mathematical logic and analytic philosophy (who received the
Nobel Prize for literature in 1950) saw good in its proportion to evil; he was an atheist.

The good once defined, the rest of ethics follows: we ought to act in the way we
believe most likely to create as much good as possible, and as little as possible
correlative evil [3].

All three philosophers were ethical thinkers with a different concept of good. Thus, in
medicine, if our goal is to pursue and do “good,” we need to define what we mean by
good. As social, political, and technological changes take place, we need to discuss and to
establish codes and standards of conduct to guide us, individually or as groups, to behave
in an ethical way that creates an environment in which conditions like fairness, honesty,
harmony, and justice are maintained. As in medicine, most institutions such as law,
government, and industry establish and declare ethical standards for their conduct. Such
standards require revision or change as circumstances change or new issues arise.
Ultimately an ethical approach is one that is universally considered good by rational,
unbiased, and independent observers.

Broadly speaking, there is a reasonably universal agreement and understanding as to

what “good” is in medicine; we’d all like to live long, remain healthy, avoid pain, and
eliminate suffering. Any deed that contributes to these is considered good and any deed
that limits or prevents them is considered bad. However, medicine is rapidly changing;
new knowledge, new techniques, high cost, limited resources, and high public expectation
bring about individual or group conditions and issues that require specific ethical
considerations. Examples include issues such as abortion, blood transfusion, end-of-life
matters, individual wishes, autonomy, organ transplant, disparities, and religious beliefs.
Such matters are under the umbrella of applied ethics, which includes medical ethics,
bioethics, and neuroethics. They increasingly are becoming a part of medicine. Such
issues need to be discussed and communicated, and agreements sought. There are
numerous journal articles, writings on the web, and books on such subjects. For example,
books like Clinical Ethics by Jonsen et al and Principles of Biomedical Ethics by
Beauchamp and Childress (see bibliography) should be a good place to start for a reader
wishing broader views.

Key Ethical Principles

Because individual perceptions of what is ethical vary, the ethical standard of one
individual may not be acceptable to another. Thus, key ethical principles such as
autonomy, beneficence, nonmaleficence, and justice are important ethical foundations
through which one can find direction toward ethical approaches, to develop individual or
group ethical standards, and to evaluate others’ level of attachment to them. The
following is a short description of such principles that need to be followed in
communication.

Autonomy
As mentioned earlier, autonomy is the freedom to act on one’s own behalf without
external force or coercion. The concept is the centerpiece for an individual’s rights and
dignity; it is a concept that declares and considers every human as an end, not as a
means. Autonomy in the doctor–patient relationship is often discussed in relation to the
patient’s choice in accepting or refusing treatments, if the patient is an adult and has a
sound mind. The philosophical concept of autonomy is profound and not easy to put in
words; its limits and boundaries are not always clear in practice. The more one can
understand and accept the concept of human rights and respect for an individual, the
more one can realize its value not only for an individual but also for society as a whole
and for peaceful coexistence.

In medicine, while there can be a general agreement about who is an adult, at least
based on age, it is not always clear where the boundary of a sound mind rests and
exactly when it begins to become unsound. The term reasonable is often applicable. For
example, it is reasonable to assume that generally we desire and strive for survival and
want to be free of illness and pain. It is generally assumed that unless there is
reasonable medical and/or legal evidence to the contrary, an adult is free to choose or to
refuse treatment. For a patient to participate in making decisions for treatments,
communication should be to a reasonable extent so that an average person can
understand it. Autonomy will be discussed further in relation to other issues in future
chapters.
Beneficence
Beneficence refers to an act or behavior that does good and benefits individuals or
groups. It is a part of morality and duty that an individual owes to society. A group or a
society with weak attachment to the concept of beneficence, in which everyone attempts
to do good only to himself, is injudiciously competitive and mutually destructive.
Practically everyone with the belief and intention for being beneficent can in some way
contribute to the wellbeing of an individual or society. One can try to promote education,
health, peace, prosperity, security, and many other socially acceptable deeds. People
assume varied levels of obligation to promote the welfares of others. Some find their
obligation to their close family; others participate in acts called supererogation that are
far beyond the call of duty. In medicine, promotion of the patient’s health, and, to the
degree of the individual’s ability, the promotion of the health of the society, is a duty for
physicians and for allied health providers; it is a duty that society expects.

In communication, beneficence applies to information a patient needs to understand the

nature of the illness involved, the process of evaluation, and the best treatment
available. Information needs to be conveyed with sufficient clarity and details to enable
the patient to reasonably understand the potential benefits, complications, or harm of
each option. Information must be conveyed in a manner that the patient’s acceptance or
refusal is based on appropriate reasons, not out of unwarranted fear. Unreasonable
downplay or exaggerated information about the benefit or complication, given mainly to
benefit or to protect the caregiver, is not helpful, not beneficence, and is unfair. For
example, a physician once told me that when he wants a patient to refuse a test or an
operation, he would exaggerate the complication. That is wrong because the patient’s
choice would be based on inaccurate information.

Nonmaleficence
Nonmaleficence is the duty of not doing harm to others; it is the ethical obligation of
everyone and is to be universal. In medicine the concept of primum non nocere, or first
do no harm, is historically recognized to be the physician’s duty. It is uncommon to find a
caregiver, unless mentally deranged, who intends to harm patients. But unintentional
harm in pursuit of helping is not uncommon. Most treatments are associated with certain
degrees of side effects or harms; thus, the concept of least harm is more applicable in
medicine. In communication, the task is to estimate and predict the benefit against the
harm that a treatment can cause and to inform the patient.

Justice
Justice is an essential ethical principle. No individual, group, or establishment can have a
healthy or lasting relationship if there is no justice. “When people speak of justice we see
that they all mean that kind of state of character that disposes them to perform just acts,
and behave in just manner, and wish for what is just,” wrote Aristotle [1]. There is an
abundant amount of literature on philosophical discussions regarding justice in relation to
social and legal matters. A detailed summary and discussion of varied concepts of justice
can be found in the Stanford Encyclopedia of Philosophy. In communication, the concept
of justice is to give what is due. While many questions may be raised as to what fairness
is, John Rawls’s concept of justice as fairness [4] is a concept that may apply to
communication with patients.

In addition to the physical stress, a disease can also cause mental stress that might
hinder a patient’s ability to choose an option that may yield a better outcome. Justice
then dictates that a caregiver become familiar with the patient’s views to understand
what the patient means by what he or she says. Prior to a treatment, the patient needs
to know the potential outcome and the probability of the desired response to the
treatment. Perhaps one aspect of the art of medicine and fairness is how to give each
piece of information at the time the patient needs it and in a manner least emotionally
disturbing. Some of these issues will be discussed in coming chapters.

Ethical Standards in Medicine

The code of ethics by various medical organizations may basically be similar, yet different
individuals or groups among the public may have different ethical views on abortion,
transfusion, quality of life, withdrawing treatments, and others. The ethical standard of a
physician thus may not be similar to that of a patient. That is why the ethical standard of
a physician or a group in the profession needs to be declared clearly and publicly.

The code of ethics by The American Medical Association (AMA) in Principles of Medical
Ethics [5] states:

-as a member of this profession, a physician must recognize responsibility to patients

first and foremost, as well as to society, to other health professionals, and to self.
-they are not laws, but standards of conduct which define the essentials of honorable
behavior for the physician.

In addition, there are numerous specialty branches in medicine; each adds or declares its
ethical standards based on the specifics related to the organization. Because
circumstances change, new ethical issues come up. In medicine, the Oath of Hippocrates
has been revised many times. The word Apollo was changed by some to “by whatever he
or she holds sacred”; the word abortion was eliminated by some others. Certain medical
schools require the oath; others do not [6].

What Is a Profession?
In general, a profession such as medicine or law is obtained through specific
requirements and agreements. It takes a period of education and training, usually in
years, that is taught in an academic atmosphere by qualified teachers. It is usually run by
a recognized body or a society. It requires qualification and examinations and often
requires a license. For a profession such as music or surgery, one develops skills through
years of practice. Usually one chooses a profession voluntarily and frequently practices
that throughout his or her career.

A job is usually done to make money to live. Professionals usually determine their own
hours of work and determine or negotiate their own salaries or hourly pay. Professionals
often have sufficient income to live reasonably well. Except for certain professions, such
as in sports, one seldom becomes very rich. However, one enjoys a certain respect in
society. People seek advice of a professional person because they do not have the
expertise they need for a certain issue at hand; in a sense, they are purchasing the
knowhow they do not have. Thus, there comes the need for professionalism with the
required moral responsibility on the part of the one who knows, advises or directs the
person who does not know.

Professionalism
The Hippocratic Oath may be considered a version of what today is called professionalism
[7]. The American Board of Internal Medicine (ABIM) Foundation [8], in conjunction with
a number of other foundations, medical organizations, and physicians, developed a
charter describing professionalism. It was published in the February 2002 issue of Annals
of Internal Medicine. It states that professionalism “is the basis of medicine’s contract
with society.” The charter describes three fundamental principles and a set of
professional responsibilities consisting of ten commitments on the part of physicians.

The principles are as follows:

(1) Primacy of patient welfare

(2) Patient autonomy
(3) Social justice

The commitments are as follows:

(1) Professional competence

(2) Honesty with patients
(3) Patient confidentiality
(4) Maintaining appropriate relations with patients
(5) Improving quality of care
(6) Improving access to care
(7) A just distribution of finite resources
(8) Scientific knowledge
(9) Maintaining trust by managing conflict of interest
 (10) Professional responsibilities

To define “professionalism” becomes more and more difficult as one tries to describe or
especially to practice its elements. Each element requires a broad discussion of what is
meant by the term used and what is needed to make its application possible—for
example, how and on what basis one adjusts the “distribution of finite resources” and
who decides; the term “just” means different things to different individuals. While a
physician can certainly participate in varied ways to improve the “access” and the
“quality” of care, in practice these require national involvement and national policies.
Today, it is popular to discuss the need of professionalism in medicine and surely it is
imperative. However, professionalism should be for everyone: in medicine, for anyone
who supplies a product, gives a service, conveys information, or makes policies that affect
the health and lives of the public. Nevertheless, it is not too difficult to understand the
basic concept of professionalism, once the key ethical principles are understood.

“Truth”
Like “ethical” and “professionalism,” truth is another term we often use. But, when we
begin to define or to discuss it, we may find it difficult. Over the centuries, numerous
philosophers have described, theorized, and written about it. According to Bradley
Dowden and Norman Swartz [9], the most important theories of truth are the
Correspondence Theory, the Semantic Theory, the Deflationary Theory, the Coherence
Theory, and the Pragmatic Theory. Now, avoiding the details, let us just choose a
common definition of truth: conformity with fact and reality. It still depends on who
determines the fact and the reality. To do so, one needs to have related knowledge and
appropriate expertise about the subject. “Fact” in general is something that has occurred;
it is verifiable, and evidence supports it. It is neither a theory, nor an idea, nor an
opinion.

Communication with a patient is satisfactory when we convey information that is true and
is based on fact. But whose fact, and how do we know that what we believe is true? We
want to be truthful, but we do not have every expertise to determine every fact, and life
has to go on. What we now know is based on the experience and tools used by those
before us; with better tools and experience, the facts become clearer. Thus, the truth of
what we know is tentative: it could be true, partially true, or even false. However, we still
can still communicate so long as what we convey is as truthful as we know it to be.
William Osler [10] said it best:

At the outset do not be worried about this big subject—Truth. It is a very simple matter
if each one of you starts with the desire to get as much as possible. No human being is
constituted to know the truth, the whole truth, and nothing but the truth; and even the
best of men must be content with fragments, with partial glimpses, never the full
fruition. In this unsatisfied quest the attitude of mind, the desire, the thirst (a thirst
 that from the soul must rise!), the fervent longing are the be-all and the end-all.

The search for truth is probably the most important task in any human endeavor and an
ideal or perhaps an obligation if we are to differentiate ourselves from other species. If
everyone were to be genuinely interested and committed to this concept, we would have
a different world; we would accept the truth when it is reasonably proven to be. We
would have more peace, more happiness, and more cooperation.

Compassion
Compassion is one of the basic moral values. It relates to our deep understanding and
empathy for another being suffering from an unhappy condition such as pain, illness,
poverty, loss of love, and/or loneliness. In practice, however, each person has a different
level of compassion and for different reasons. Most of us have compassion for issues to
which we relate. We tend to feel more compassionate for those closer to us: family,
friends, and compatriots. We also feel compassionate for those who are innocent victims,
the children, and the sick. As we advance intellectually, the circle of our compassion
widens and expands to the people everywhere in the world, to animals, to the
environment, and to those yet to come. We do not approve nor do we excuse, yet we feel
compassionate for those who have become the victim of their own deeds or misdeeds.
Whether based on identification, certain values, or beliefs, compassion is a virtue, yet
more so if the attitude is applied universally.

For the doctor compassion is a duty, an expectation, and a need for patient care; that is
because it is a part of the therapy. Patients cannot feel comfortable or even trust a doctor
in whom they find no evidence of compassion. In general, doctors and nurses are
compassionate. In part, that is why they choose such professions. However, compassion
may be hidden, hard to measure, or difficult to judge unless one knows the
circumstances. For example, it may be hard to measure or to appreciate compassion in a
surgeon who gets up in the middle of the night, who needs to move fast, struggles to
save a life, but appears brusque because of having no time for long discussions or
pleasantries. On the other hand, certain behavior or approaches may appear
compassionate but not sincere. Ultimately, compassion in medicine is about giving that
which eliminates or reduces physical or mental suffering.

Sincere Attitude
Sincere attitude is the commitment to the truthfulness of what we convey and is the
earnestness of the compassion we express. It is also a commitment to the care we give
to be in the best interest of the patient. Misplaced or unrelated truth would not help a
patient in a dilemma of which options to take. Unnecessary or unwanted compassion is
just pity; it may be something to make ourselves feel better. Playing with truth and with
compassion is just a game, and playing games with a patient’s emotions is unfair and not
 honest. Sincerity brings the order, the timing, and the content of what is communicated in
ways and manners that could help the patient participate in decisions and ease the
impact of the illness.

Professional Standards
One cannot depend solely on the doctor’s personal ethical standards or values for
treatment. Patient care requires certain standards and professionally acceptable
measures, declared and communicated in advance, so the public knows what to expect.
In addition, a doctor’s obligation is not limited to the patient and to the family alone;
there is an obligation to society, to law, and to the profession. Each profession then
needs to declare its standard of professionalism.

On December 4, 2004, the House of Delegates of the American Medical Association [5]
adopted the following “Professional Responsibility” and “Social Contract” with Humanity:

We, the members of the world community of physicians, solemnly commit ourselves to:

Respect human life and the dignity of every individual.

Refrain from supporting or committing crimes against humanity and condemn all such
acts.
Treat the sick and injured with competence and compassion and without prejudice.
Apply our knowledge and skills when needed, though doing so may put us at risk.
V. Protect the privacy and confidentiality of those for whom we care and breach that
confidence only when keeping it would seriously threaten their health and safety or that
of others.
I. Work freely with colleagues to discover, develop, and promote advances in medicine
and public health that ameliorate suffering and contribute to human well-being.
VII. Educate the public and polity about present and future threats to the health of
humanity.
VIII. Advocate for social, economic, educational, and political changes that ameliorate
suffering, and contribute to human well-being.
Teach and mentor those who follow us for they are the future of our caring profession.

We make these promises solemnly, freely, and upon our personal and professional honor.

The American College of Surgeons considers the following four issues to be highlighted
[11]:

1) A good surgeon is more than a technician, and reliance on technical expertise alone as
the basis of professionalism might weaken our claim to public legitimacy. The trust and
cooperation needed to advance patient welfare and the importance of the professional
voice in public debate require that technical expertise be infused with the moral
understanding of the role of professionals.
 2) Ethical practice and professionalism are closely related, but not synonymous. Extending
beyond traditional medical ethics, professionalism has a public orientation that reaches
beyond the consulting room and operating theatre. It incorporates surgeons’ relationships
with patients and society.
(3) Although professional status inherently enjoys material rewards, prestige, and relative
autonomy, there must be consequences for unprofessional behavior. Any abuse of patient
or public trust necessarily results in a diminution in status of the entire profession and the
inherent associated privileges. In this manner, the behavior of each member of the
profession affects the whole.
(4) Professional organizations have fundamental responsibilities to specify, teach,
encourage, and ensure the professional behavior of their members.

Varied organizations include certain codes of ethics that relate to their profession in their
statement of professionalism. While many organizations include and declare
professionalism as part of their values and commitment to society, professionalism should
be for everyone, not just for those who declare their occupation a profession, especially
for those whose interaction with the public involves trust.
Throughout doctor–patient relationship, varied information needs to be communicated
between the doctor and the patient. To be effective, the information needs to be
accurate, useful, and conveyed when needed most. The relationship can be divided in
three stages, each of which requires specific types of information:

Stage I—The moment an appointment is being made until the first visit

Stage II—The moment the doctor sees the patient until a recommendation is made
for the management

Stage III—When treatment(s) begin until the relationship terminates

Stage I

Communication and Making an Appointment

From the moment a patient calls for an appointment, impressions develop by the patient,
the doctor, and the staff. Rapid response versus lack of response; taking time to listen
versus a hasty disinterested response; and the way the staff speaks with the patient
would influence the relationship. While the following suggestions appear obvious, they
are important issues and they require attention to initiate an appropriate relationship
and/or to prevent delay in care.

The appointment is to be for conditions within the expertise of the doctor.

The waiting duration is to be appropriate for the illness or the gravity of the
symptoms.
Any previous records needed for evaluation or treatments are to become available
at the first visit.
The patient or the family needs to know information regarding the phone number
 of the person to call to obtain any additional information or to report any change in
condition.
The location of the office, parking, and the likely duration of waiting should be
mentioned
When a doctor refers a patient to a colleague, it is important, helpful, and
courteous to send a letter of referral together with appropriate records, or at least
a call explaining the reason for referral.
One may need to mention the likely cost for the visit.

Stage II

Communication During the First Visit

Trust is a major issue in interpersonal relations. A patient must have had a certain degree
of trust in the doctor before attempting to make the appointment. No matter how
competent a physician may be, the doctor–patient relationship would not work if the
patient cannot continue to trust the doctor and the system. Before entering the room, the
doctor needs to have some knowledge about the first stage. The first visit is an important
stage in a doctor–patient relationship, and the goal is to establish the following to:

Reinforce the patient’s trust,

Correct any potential misunderstanding or shortcoming that may have occurred
during the first stage,
Review the pertinent records, examine the patient, evaluate the patient’s
condition,
Arrive at a diagnosis for the patient’s condition,
Determine the disposition of the patient or to make a recommendation,
Decide if, for any medical or other reason, the doctor is unable to manage the
patient,
Decide if, for any reason, the patient is unable to work with the doctor.

The interview requires a certain structure; some question or comments are best dealt
with in the beginning, others later. One needs to know the patient before asking certain
questions or making certain comments. The following process may be helpful.

First Comment
Some circumstances necessitate a comment before asking any questions. For example:

To a patient who has been waiting long: “I am sorry you have been waiting so
long.”
To introduce those who may accompany the doctor, e.g., “This is our student
(nurse or resident). I hope you don’t mind. Let me know if at any time you want a
 more private discussion.”
To a patient who feels that everything was already said to the nurse or others: “I
know you have just been asked a lot of questions, but I’d like to hear from you the
reason why you are here.”

First Question
Except for infants, it is best to direct the first question to the patient, even with children
or with adults who have cognitive or communication problems. This way one respects the
individuality of the patient and draws direct information from the actual source regarding
the:

Patient’s ability to verbalize the condition, convey the feeling, and to communicate
Patient’s complaint, perception, understanding, and the expectation for the visit
Patient’s education, cognition, mood, and personality
Manner of interruption, participation, and interaction made by the family

In addition to respecting individuality, directing the first question to the patient conveys
the doctor’s interest in knowing the patient’s personal feelings and helps to decide how
and to whom to direct the next question.

Timing of the Questions

At this stage, one needs to ask only questions that are pertinent for diagnosis, to avoid
those that may give unrelated responses, or those that may disturb the patient. For each
question, there is an appropriate timing, where before or later could be inappropriate or
can cause misunderstanding. In the beginning, it is unwise to ask personal questions that
have no relevance, such as a person’s income, religious belief, or place of origin. While it
is pertinent to ask questions regarding the patient’s type of work to see if it may cause
certain physical, mental, or chemical effects, one does not need to delve into details of
someone’s work or other personal matters that would not help the diagnosis.

At times, a question may be pertinent but ill timed. On one occasion during the interview,
a resident asked a young patient about her relationship with her husband. She became
extremely upset and reported him to his superior. Later, it became clear that the patient
did in fact have a problem with her husband and such a question could have been
appropriate, but not when asked.

To avoid responses that are neither related nor helpful for diagnosis, it is best to
communicate in terms that are simple and unambiguous, like:

I would like to know the reason you are here.

I reviewed your records but I’d like to hear from you what brought you here.
Our nurse (or others) told me about the pain you have, but I’d like to hear from
 you about the onset, duration, and the intensity.
I know you are here for a consultation (or second opinion, worker compensation,
etc.), but I’d like to know if there is a specific issue that is of concern to you.
Our nurse (or others) tells me that you were just treated (operated, etc.)
elsewhere and you are not happy. I’d like to know what it is that you are not
happy about.

First questions like “How are you?” or “Can I help you?” are general, nonspecific, and may
provoke unrelated response for the illness.

Listening
Patients often find it difficult or feel uncomfortable to talk to a doctor who is standing or
appears hurried, especially when they want to discuss something important to them.

It is essential that the doctor:

Be seated in a chair, not on a bed, examining table, or desk

Not appear hurried, annoyed, distracted
Listen without interruption until the patient finishes talking. Short responses may
need encouragement by saying: tell me more about it, give me the background, or
tell me why
Look directly without staring at the patient or the family when they speak, with
periodic short glances elsewhere
Avoid looking at notes, X-rays, records, the computer, or taking notes, especially
during the response to the first question
Discourage interruption by others accompanying the doctor

One must understand what the patient means by using certain words. For example, here
are some actual terms that patients may use:

For weakness of the leg or the foot, the patient may say: I wobble, I can’t walk,
my knee buckles, my balance is not good, I can’t walk downstairs, or I easily fall.
In the case of weakness in children, a mother may say: he does not want to play
or run anymore; in relation to ataxia, she may say: he is clumsy; or in relation to
pain, she may say: he cries all the time.
A patient with focal seizure may say: I get a spasm in my hand or I get nervous
and shake.
At times, patients may use diagnostic terms thought of by themselves or used by
other caregivers, such as: I have migraine headaches, fibromyalgia, or
maladjusted spine.
Patients often correlate the onset of their symptoms with a certain occasion or
incident that may or may not be related, such as: since Thanksgiving, the birth of
the child, came back from the trip, the accident, or since the operation.
Similar terms are likely used in every branch of medicine. We learn most medical terms in
Latin; patients use ordinary terms they believe express their conditions. Their use of
terms may or may not be accurate and may help or dissuade us from ordering
appropriate tests or making an appropriate diagnosis. One often needs to ask: What do
you mean? or Can you explain why you think this way? or Who made that diagnosis? In
certain conditions such as tremor or spasm, one may have to ask the patient to imitate it.

It is after the initial interaction with the patient that one may direct questions to
appropriate individuals who may have accompanied the patient. Then one can begin
taking notes, or look at the records if needed.

Communication during the Visit

Communication includes everything conveyed intentionally or unintentionally through
words, facial expressions, body position, writing, drawing, giving handouts, listening, not
responding, or by not saying anything. Communication is not always received as meant.
Patients may interpret certain actions, gestures, single words, or exclamations correctly
or incorrectly. The more subtle the communication, the more likely it is to be
misconstrued. At times, a doctor may enter the room with casual clothes, appear overly
friendly or bubbly, might call the patient by his or her first name, or may sit any place;
occasionally, I have noted one even sitting on the floor. Those may be appropriate for
children. One does not have to be extremely formal, appear rigid, or ask questions as a
prosecutor may do. Adults expect a certain demeanor appropriate for each profession.

Wall posters, photos, diplomas, and anatomical objects mounted on the walls to convey
certain messages may or may not receive the same communication by everyone as
intended. A patient once asked me if a colleague was “arrogant.” He had posted a
number of his accolades on the office wall. It is likely that the doctor wanted to convey
his expertise and experience, certainly not to convey arrogance, yet it appeared to the
patient that way. Some may find certain anatomical structures, tissues, or blood
unpleasant to look at.

Once a secretary of mine could not tolerate hearing the term blood or she felt sick if
she saw a picture of it or of the body tissues. Similarly during a dinner arranged to seek
financial support from the participants for research, several persons felt sick and
annoyed when the speaker presented slides that were photos of an operation. It may
take some time before one feels comfortable seeing photos of anatomical structures. It
is astonishing that after a while my secretary became so adapted that she could even
tolerate looking at the actual anatomical parts and bodies fixed and shown in a
museum.

In communication with patients, if it is needed, it is better for some to show them

diagrams rather than photos of body parts.
During the examination, the doctor’s behavior, the so-called “bedside manner” ways of
questioning, would also communicate a good deal of intended or unintended signals.
There is no reason to ask any question based on curiosity that does not help evaluation.
If the examination requires the patient to undress, it is important to give instructions for
the extent of removal and for it to be done in the privacy of the room, unless help from
the family or appropriate personnel is needed. If, during the examination, certain clothing
such as hat, shoes, or socks would need removal, it is polite and wise to ask the patient
to remove them, or to ask permission for removal if the patient needs help. Through
misunderstanding or occasionally by being inappropriate, a patient may undress more
than the amount instructed. It is best to cover the areas not intended to be examined,
especially for the breasts in women and for genitalia in both men and women.

As one examines various parts of the body, new questions may come up that help
evaluation and are appropriate. But the question is best to be related to the area being
examined. It may cause concern, misunderstanding, or confusion if, during examination of
one organ or a part of the body, one suddenly asks about another part without explaining
the relation or the reason for the question. It is unwise to make a comment that could be
insulting, rude, out of sequence, or gives a wrong signal. A patient may call himself fat,
skinny, old, or dumb, yet can easily feel insulted if the doctor refers to him as such. It is
unwise to mumble, say unintelligible words, or use expressions such as ah, wow,
interesting, or to show something to students or nurses without explaining to the patient
what was meant. Patients in general do not mind if the doctor shows some finding to
students for teaching. However, they may mind or become alarmed if they do not know
its significance or do not know what the issue is about.

A colleague once told me about his experience with a patient who became upset and
almost passed out during an eye examination. The doctor had had trouble with
adjusting the ophthalmoscope and had uttered “impossible”; the patient took it as if it
would be impossible for him to recover.

When others whose relationship with the patient is not known have accompanied the
patient, it is better to ask about the nature of the relationship rather than making
statements such as: “Is she your mother (sister, wife, etc.)?” Except for the presence of
the nurse or parents of children, one may have to ask if the patient feels comfortable for
examination in front of those who accompanied the patient or those accompanying the
doctor. At times, a patient may become curious and ask the doctor personal questions
about his or her family, children, place of birth, religious beliefs, or political views. A short
response to an appropriate question should be proper to avoid having the patient feel
ignored or feel uncomfortable, but it is unwise to respond in detail to unrelated personal
questions. However, it is a prerogative of the patient if he or she wants to know about
the doctor’s level of experience or expertise about the condition.

Effective Communication
Effective communication results when the patient receives and understands enough
information to be able to participate in making treatment decisions. Some physicians use
prepared written materials, articles, or multimedia to explain the illness, procedures, or
operations. This way one can demonstrate anatomical structure better than it can be
drawn, the patient can review the material repeatedly with better understanding of the
details, and the presentation can be used to document communication if needed later. On
the other hand, it may not produce the intended result if it shortens the personal
communication each person may need. There are variations in conditions having the
same diagnosis; the patient needs to know which one applies to him or to her. The
patient may take the condition to be more serious or less than what it is or miss the
opportunity to ask questions. The doctor may miss the opportunity to find out if the
patient understands everything needed.

Words
Words and timing for their usage are the essence of communication. Based on their
previous experience, common words like “cancer,” “stroke,” and “paralysis” convey
different messages and meanings to varied patients. Even for patients with somewhat
similar previous experiences or for those with certain medical knowledge, such terms
could be misinterpreted or be disturbing. Each patient needs to know not only the
diagnosis, but also its significance. As Harry Stack Sullivan [1] puts it:

…an enormous amount of difficulty all through life arises from fact that communicative
behavior miscarries because words do not carry meaning, but evoke meaning. And if a
word evokes in the hearer something quite different from that which it was expected to
evoke, communication is not a success.

Sullivan (1892–1949) was the professor and the head of the Department of Psychiatry at
Georgetown University Medical School. He believed psychiatry is the study of what goes
on between people.

Confidentiality
The privacy of the patient’s medical information has always been one of the duties and
obligations of the caregivers. The Oath of Hippocrates [2] includes the statement:

Whatever I see or hear in the lives of my patients, whether in connection with my

professional practice or not, which ought not to be spoken of outside, I will keep secret,
as considering all such things to be private.

The American Medical Association (AMA) code of ethics indicates [3]:

A physician may not disclose any medical information revealed by a patient or

discovered by a physician in connection with the treatment of a patient.
“The federal Health Insurance Portability and Accountability Act (HIPAA) sets a national
standard for privacy of health information. It was implemented in 2003. But HIPAA only
applies to medical records maintained by healthcare providers, health plans, and health
clearinghouses—and only if the facility maintains and transmits records in electronic
form.” [4] Various states may have additional standards. The right for confidentiality is
not limited to the records alone; except for those allowed by law, it is for any method of
exposure of a patient’s health information that can identify the patient.

Some patients may want to keep certain issues confidential even from certain close
members of their family. To facilitate the interview, the patient needs to trust and may
need to be told that the record remains confidential, revealed to those approved by the
patient and to those approved by law. The doctor may also indicate that he feels obliged
to inform appropriate officials about conditions that may significantly harm others..
Furthermore, a patient may wish not to talk about an issue that comes up in discussion. If
it is not related to the illness or does not help diagnosis, there is no reason to pursue it; if
related, the potential risk may need to be communicated.

Withholding Information by Patient

Doctor–patient relationships and medical care work best when the patient’s
communication is also based on honesty and sincerity. A doctor should be entitled to ask
any question deemed important for diagnosis and treatment. However, the patient is
entitled to avoid answering any question that he or she does not want to answer.
Patients usually are anxious to give information to the doctor, although the information
may be inadequate and at times erroneous. However, for varied reasons, at times a
patient may hold back certain information such as records, studies of previous
operation(s), trauma, or presence of litigation. The patient may intentionally avoid
indicating a previous evaluation or consultation to test the doctor. Once these occur, one
can gently convey the potential unanticipated consequences.

A pregnant woman entered the hospital shortly after she began having pain. She
denied having any previous pregnancy and childbirth. Thinking that it would take some
time before she delivers, the staff admitted her for preparation and administered an
enema. Then, within minutes, the cervix dilation was complete and she almost
delivered in the bathroom. Soon it became clear that she kept the staff in the dark to
avoid having her new husband become aware of the previous childbirth.

What Do Patients Want to Know?

Asked or not, patients usually want to know the nature of the illness they have and its
consequences as well as if it would get better on its own or needs treatment. They want
to know if it requires medication, surgery, or any other treatment. They like to know the
options and the potential outcome for each and what happens if they do not have any
treatment. Patients would also like to know if the doctor is the right person for the
condition; if yes, who else is involved? What would the cost be and who pays? In case of
the need to go to another physician, to whom and where should they go? A survey by
Consumer Reports [5] indicates the issues upon which patients rate their doctors as
excellent.

Treats me with respect 77%

Listens to me with patience & understanding 67%
Seems to care about my emotional well-being 64%
Has encouraged me to ask questions 57%
Has made an effort to get to know me as a person 42%

What Do Doctors Want to Know?

For the most part, doctors want to know exactly what patients want to know. However,
they need to have adequate information before they give it to the patient. Correct
information is the essential part of communication and treatment. To obtain it, the
patient’s cooperation and collaboration are needed. A patient needs to know that certain
information is not always easily available. To obtain all the information needed requires a
certain amount of time. Certain tests are invasive or cause undue risk to the patient. For
some tests, the benefit of knowing the results would not be worth the risk. Inaccurate or
wrong information may have adverse effect(s) on treatment and may jeopardize the
doctor–patient relationship.

Options
In medicine, treatment options are varied choices, each with certain degrees of favorable
or unfavorable outcomes. The choice is not among options that work and those that
would not; it is among those that work but suits the patient best. A choice that
proportionally brings more harm or undesirable results than benefits is not an option,
despite being appropriate for other patients. The desirability of an option is based on the
degree and duration of the help, minus the degree of the stress and harm that it can
cause. For example, a patient with cancer of the spine who has just a few months of life
expectancy would not benefit from a major operation to maintain solid fusion if a simpler
treatment would equally help for the duration. Conversely, it makes no sense to continue
repeated epidural injections and/or physiotherapy, with short durations of help, in a
patient with severe spinal stenosis that requires operation.

Based on their previous experience and knowledge, patients usually have varied views of
diseases, treatments, and outcomes. To communicate a series of options and simply
leave the decision entirely up to them is not sincere, nor is it a genuine respect for
autonomy. The purpose of the communication is to enable one to choose an option that
not only is acceptable and favorable to the patient, but one that also works toward the
intended improvement. In the end, it is a doctor–patient shared decision. After a sincere
and reasonable amount of information and communication, a patient may still desire a
treatment not to his or her intended health benefit; then there is no rational reason for
the doctor to comply. In the case of surgery, the position of the American College of
Surgeons is: “When patients agree to an operation conditionally or make demands that
are unacceptable to the surgeon, the surgeon may elect to withdraw from the case” [6].

Decisions and Recommendations

Having diagnosed the illness, there comes the time for presenting options for treatment
and coming up with a recommendation. Patients do not necessarily come to us only to
receive a certain treatment or operation; they frequently want consultation, advice, or
recommendation.

We need to consider and inform them of the potential proportional health benefits and
harms of a certain treatment and to offer a recommendation we think most appropriate
for the patient. A good treatment is not just one that is available to the doctor but one
that, based on reliable medical knowledge and good reason, is appropriate for the
patient’s condition. The patient needs to know that there may be better options rendered
by other physicians or institutions. When such an option is available to the patient, it is
fair to facilitate the referral. However, such an option may not be appropriate or possible
because of the urgency of the condition or the patient may want to forego that treatment
because of personal reasons such as distance, cost, or other issues that limit the patient’s
choice.

Recommendation is not paternalism as long as it is sincere, is based on reasonable

knowledge, and is in the best health benefit of the patient; it is a part of a doctor–patient
relationship. The patient, of course, has the right to accept or decline the
recommendation. Just presenting a series of options without indicating which (in the
doctor’s opinion) might be the best for the patient’s condition is to evade professional
responsibility. Medical options are not food menus to select from what we like. In
medicine, there is hardly any treatment option that we like; we may even choose one
that we like the least because we find it is to our health benefit. Based on concern for
litigation or misplaced concept of autonomy, a physician may leave the choice of the
option entirely to the patient; that is not appropriate.

A patient diagnosed with a small cervical disc was very apprehensive, anxious, and
upset; he did not know what to do. He said that his doctor gave him three options: do
nothing and face the potential risk for paralysis in case of an accident; have an
operation through the “throat” to remove the disc with insertion of a plate and a few
screws; or have the operation from the back of the neck. He was to go home, think
about it, and let the doctor know about his decision. While the statement by the doctor
may have not been exactly the same, it was what the patient understood to have been
the recommendation.
No matter how astute they are, patients usually have difficulty choosing an option, unless
they at least have a reasonable understanding of the process and its potential outcome.
A good option is one that is based on a joint decision made by the doctor and the patient
and that which gives the best therapeutic result with least harm. The physician may have
to decline considering an option unilaterally made by the patient if there is no evidence
for a favorable therapeutic result. In communicating or recommending options, it is
important to keep in mind that the patient is not a medical student to be educated in
detail about diseases, differential diagnoses, and treatments that are not related to the
patient’s case. The need is simply to give sufficient information about the illness to
enable the patient to understand the help and the harm each option can cause.

At the end of stage II, the following three issues are important to have been
accomplished.

1. Every question the doctor and the patient want to know has been discussed or is
answered.
2. The need if any for further information, treatment, or hospitalization is discussed
and clarified.
3. If further testing, treatment, or hospitalization is required, the patient knows who
is going to be the doctor responsible for it, in what location, and who makes the
arrangements.

At the end of this stage, the patient needs to be comfortable and satisfied with the
consultation. If the doctor and patient both feel comfortable and willing to have a doctor–
patient relationship for further treatment, it is important that the patient understands the
potential limitation of therapeutic results and the essential limitation of the system under
which the doctor works. The doctor also needs to know, to the extent possible, the
personality and the expectation the patient may have.

When we become ill, we become dependent on our doctor. We want the doctor to treat
not only our illness but to treat us fairly and as an individual. We would like to trust our
doctor and use similar clues we use with others to see if they care about us. We want the
doctor to be aware also of our emotional needs and respond to them. In a survey of
patients by Consumer Reports, the patients indicate the following as to what “bugs” them
[5] about their doctor:

• Kept me waiting for 30 minutes or longer 24%

• Could not schedule an appointment within
19%
a week
• Spent too little time with me 9%
• Didn’t get me test results promptly 7%
• Didn’t respond to my phone calls promptly 6%
Communication and Computer
As in other endeavors, computer and digital techniques have enormously advanced and
facilitated diagnoses and treatment in medicine. They also have equally advanced and
facilitated gathering data and communicating scientific, clinical, and educational material.
Because face-to-face discussion is important, the computer should not become an
obstacle or act as an invisible wall between the doctor and the patient. Face to-face
discussion still coveys far more than words, diagrams, or photos alone can do. No one
likes to talk to someone who is looking elsewhere. Imagine what we feel if a patient talks
or listens to us while surfing a computer.

The computer, however, can enhance communication greatly when used at a time that is
most effective—for example, to use it when one needs to show material that educates
and enables the patent to understand the condition better and to make a more informed
decision. For each physician, the computer can help in a different way or at a different
stage of communication. For my work, what I find most effective and valued by patients
is to listen to them as long as each needs; then I write down dates or events important
for diagnosis and treatment briefly enough to remember to dictate or to enter them in the
computer later. At the end of the visit, I use the computer to review, to educate, and to
show the patient his or her MRI scans or other tests that require attention or discussion.

Stage III

Acceptance to Treat
In words or in writing, accepting to treat and being treated is the beginning of the main
doctor–patient relationship. As information is gathered and the plan for treatment is
made, members of the team need to communicate with each other. Some patients or
families are anxious and may start asking questions of anyone who appears to be
connected with the team or wears a white coat. In a training program, a problem may
arise when different members of the team communicate with the patient or the family,
expressing their own opinions, or may convey issues not yet ready to be communicated.
Patients often become confused, get disturbed, or lose trust if they hear or find
discrepancy in information or opinions conveyed to them.

It is a good practice to encourage the patient or the family to report to the staff should
they know or find something that may help treatment that has not been discussed.
Communication with the nursing staff and their involvement in discussion about the
treatment plan is essential. Diagnosis and treatment are progressive processes; the
patient’s condition can change, and plans may have to be adjusted. Writing orders and
giving instructions are not enough; to leave a major segment of caregivers unaware of
the processes can cause confusion and shortcomings in treatment. It is not appropriate
for one without specific authority to discuss the care or the plan with the patient. If the
patient asks for information, it is a wrong choice of words to say, I cannot tell you or I am
not authorized to tell you; the patient may feel that something is wrong. It is better to
tell something that is true but not disturbing, such as, I trust your doctor will talk to you
when he or she has the information, or I will let your doctor know that you were
interested in knowing about that issue.

Inside the Hospital

Despite freedom of choice, regulations, and communication, when we are admitted to the
hospital, we no longer feel free or in charge. Our clothing is replaced by gowns, our
rooms can be entered by many, and we are waiting for things to happen about which we
have limited understanding. At times it seems as if we have returned to our childhood,
looking for kindness, getting hurt easily, and feeling vulnerable. A bit of recognition by
the staff, a touch of comfort by the nurse, a smile by anyone, and an extra visit by the
doctor (especially on holidays) all go very far. Any unknown event can make us worried,
suspicious, or simply paranoid. Once, a physician colleague told me about the time he
was admitted to the hospital with chest pain and was on the monitor; anytime he heard
on the loud speaker, “Paging the emergency resuscitation team,” he looked at the
monitor and wondered if the call was for him.

Want to Know and Do Not Want to Know

Patients usually look forward to the doctor’s daily visit to hear about the status of their
illness; some get used to the time and wait for that. If the visit is going to be at an
irregular time, it is of comfort for them to know that the doctor is accessible if a problem
develops. To hear about their illness, tests, and operations can be threatening and often
frightening. Some want to know the whole truth but cannot take it; some want to know
the good news only; others hear the truth but don’t believe it or deny it. Some don’t want
to know anything and say, “Doctor, I know you do your best. You don’t have to tell me,”
or they say, “I know you would call me if I need to know.”

It is not enough to know about the patient’s illness; one also needs to know the person,
to have an assessment of the personality and beliefs, before embarking on giving news.
To avoid stressful communication, it is best to ask the patients in advance about the
extent of the family involvement and about the kind of information that is important for
them to know. Some prefer the discussion with them alone; others prefer the presence of
a family member or a friend. Some may want to know everything despite it being
stressful for them. While stressful, once they like to hear it, one ought to tell them the
truth. Because it still is not easy to hear bad news, a compassionate and empathetic way
is needed to soften the blow.

Based on our philosophical views, we think differently about life, illness, and death.
Unless one asks, it is not proper to guess the patient’s view. A patient with a malignant
tumor said to me, “Doctor, I am a professor of history; I know about the coming and the
going. I had a good life and I have no fear of death; I just want to know what I have to
go through.” The main concern in another with cancer of the breast was future pain; she
wanted to learn “hypnosis” to help her, should she develop bone metastasis. Another
young patient, with a severe physical disability, welcomed death, for she believed that in
her next life she would get a new body.

Fear of Knowing
Most patients want to know about their illnesses and the plans for treatment. Yet
practically all have a certain degree of concern or fear to hear it, especially if there is a
possibility of bad news. Dr. Edward E. Rosenbaum [7], a nationally known rheumatologist
who, in World War II, was decorated for use of penicillin on the wounded on the
battlefield, was diagnosed with cancer of the vocal cords in 1958. On being admitted to
the hospital where he had been chief of staff and the president, he had to sit like an
“ordinary person” in the admissions office for one hour. He indicates that this was a
hospital where, “On fifteen thousand previous occasions I had entered through a private
door like a king.” He wrote:

I am terrified at the thought of examining my own chart for fear that someone has
recorded in it a poor prognosis. I know that’s illogical and that I should look to see if
there’s an error that could be corrected. But I am no longer able to function as my own
doctor.

Despite what we say, we do not always know how we will feel or how we will behave
until we get there. It may be easy to discuss death when we are not facing it, but when
we do, it may be something else. When Dr. Elizabeth Kübler-Ross was studying death and
dying, two very compassionate persons on her team used to come to our service to
interview some patients regarding their feelings about death. The work was published in
an informative and useful book, On Death and Dying [8], to which I will refer later. As it
happened, one of those two persons later became my patient. Any time I entered his
room, he became frightened, sweaty, and pale. Once I asked him about the reason, he
told me that he was afraid that I was going to talk to him about death. I did not have the
opportunity to ask the other person how he himself felt about death; but I asked his wife
some time later after he had suddenly died. She told me that her husband was always
fearful of death.

Timing of Communication
Communication is useful and effective when one does it at the time most needed. An ill-
timed communication can be ineffective, frightening, misunderstood, or even harmful.
Unless it is an urgent situation when one needs to communicate within a short time,
talking about serious complications or death just before an operation is disturbing and
frightening. This is the time for pleasantry and an appropriate atmosphere of calm and
confidence; the discussion about complications and risk to life should have taken place
before. The comforting effect on the patient by the presence of the surgeon in the
operating room prior to the onset of anesthesia is tremendous; the same is true for after
the operation, in the recovery room. It is interesting to note that at times, after the
operation and in the recovery room, the patient appears groggy, squeezing his or her
eyes, believing that the operation is still going on. But just hearing the surgeon’s voice
telling him that the operation is through and went well is so comforting; the patient
opens his eyes and is back to reality. While a few comments may be needed to comfort
the patient, a detailed discussion of the outcome shortly after an operation when the
patient is not quite awake is premature.

To convey malignancy before confirmation by biopsy, erroneous prediction of the

outcome, or incorrect bad news are all wrong and cause unnecessary stress for the
patient and the family. Later, even when the error is corrected and the patient is
comforted, the mistake would still create a source of mistrust in a doctor–patient
relationship.

A patient of mine told me about a frightening experience she and her family had. Her
son had had an accident and was suffering hip pain. X-rays had ruled out fracture, but
because of continuous pain, another X-ray taken later showed a mass over the pelvic
bone. His doctor told him that it must have been his thumb under his body when he
took the X-ray and he should not worry. Later, the patient became more worried when
he remembered that he had held his hands over his head during the test. Another X-
ray, a few months later, revealed that the mass had become larger and the doctor
apologized for having missed a cancer, suggesting the need for referral to an
oncologist; they were to choose one. In addition to the stress of deciding which
oncologist and which hospital might be the best, they had to decide who in the family
should donate bone marrow for a transplant, an impression that somehow they had
from a previous experience. After a good deal of discussion, the mother had insisted
that she would give the bone marrow, despite her own back pain, since the father had
a cardiac problem. Finally, after a good deal of worries and frustration, they found an
oncologist; a biopsy was done and the mass was found to be only a calcified
hematoma, not cancer.

Sometimes a patient may refuse or may seek second opinions for tests or operations that
are appropriate but recommended without sufficient explanation. Or a patient may
receive an explanation too early during the visit before a trusting relationship has
developed. Patients usually want to know if the diagnosis is correct, if the treatment
recommended is appropriate, and if the doctor is the right one for them.

A patient with a tumor in the lung and with metastasis to the spine was upset with her
doctor and reluctant to have a biopsy recommended for the lung tumor. She left her
doctor for seeking a second opinion: “Perhaps they do not know what is going on,” she
 said. “They tell me that I have cancer! How do they know, if they still want me to have
a biopsy?” The reason for the biopsy was not only for the confirmation; her physician
wanted to know the type of the tumor to plan for appropriate treatment, but this was
not explained to her.

Conversely, waiting too long, until every bit of information is available or confirmed,
before informing the patient causes worry and anxiety. The patient needs to be in touch
with the process for what we know, what we are waiting to find out, and for what specific
reason we cannot know. Patients do not usually know the time each step takes; a delay
in communication can be perceived negatively or taken as bad news. To inform the
patients of the approximate duration of the processes will be helpful to them.

Communication after Operation

After the operation, communication is effective when the patient is in a condition to
understand it and to be able to follow it correctly. For certain circumstances, it is best to
instruct the patient prior to the operation and to repeat it after. For example, frequently
after operations, patients are instructed to control their pain themselves by the patient-
controlled analgesic (PCA). It is an infusion-device with an injection pump button that
usually contains a specific quantity of morphine to be used over a certain period. Such a
device could have various performances [9], and a patient may be incapable of using it
appropriately, or may use it more often than needed. This can cause airway obstruction,
especially after operation around the tracheal area, in those with muscular weakness, or
in those with pulmonary problems. A person’s ability to understand instructions or to
follow may change even for a short time as the circumstances evolve. For instance, after
a relatively simple operation, a patient was found difficult to wake up. She was told to
push the pump button “any time” she felt pain; she kept pushing it until she had fallen
into a deep sleep.

Expecting the Patient to Communicate

As was mentioned in the beginning, an effective communication is a two-way street.
Today, the diagnosis of diseases is much easier and faster than ever before. Digital
technology and technical advancements like MRI have facilitated diagnosis such that even
a medical student today can in some instances arrive at a diagnosis much better and
faster than a professor of several decades ago. The key for an appropriate treatment is
first to have adequate information about the circumstances of the illness and to suspect
the likely illness causing the symptoms, and, second, to advise the most appropriate test
that arrives at diagnosis. For the first, it is the patient who collaborates and facilitates by
giving accurate information; for the second, it is the knowledge and experience of the
physician and allied medical professions that enable making a diagnosis. Such
cooperation and alliance is required for an appropriate doctor–patient relationship.
One cannot expect that only the doctor’s communication be based on ethical standards,
truth, compassion, and sincere attitude; the same is to be expected from the patient and
those who contribute information on the patient’s behalf. Anytime there is a shortcoming,
either through a patient’s lack of ability or lack of desire to cooperate, diagnosis and
treatment can suffer. In general, most patients who have communicating ability
cooperate and collaborate. Yet at times, for various reasons, a patient might not. When
there is evidence for such failure on the part of the patient or the family, it is wise for the
doctor to indicate the need for cooperation. In a survey, Consumer Reports [5] found
“What bugs doctors about patients” as follows:

• Don’t follow their prescribed treatment 59%

• Wait too long before making an appointment 41%
• Are reluctant to discuss their symptoms 32%
• Request unnecessary tests 31%
• Request unnecessary prescriptions 28%

Some patients may feel intimidated or reluctant to “bother” their doctors. They need to
be encouraged to communicate. It is probably best to instruct them about the
condition(s) or circumstance(s) that one wants to hear about from them.
Informed Consent
While, in simple language, consent means a voluntary agreement to a process, in
medicine, the legal elements are information, voluntariness, and the patient being
competent [1]. According to the American Medical Association (AMA) [2], informed
consent is a process of communication between a patient and physician that results in the
patient’s authorization or agreement to undergo a specific medical intervention. Further,
the AMA indicates that in such a process the following should be discussed:

The patient’s diagnosis, if known

The nature and purpose of a proposed treatment or procedure
The risks and benefits of a proposed treatment or procedure
Alternatives (regardless of their cost or the extent to which the treatment options
are covered by health insurance)
The risks and benefits of the alternative treatment or procedure
The risks and benefits of not receiving or undergoing a treatment or procedure

Essentially the same applies for surgical treatment. The position of the American College
of Surgeons is that the informed consent discussion conducted by the surgeon should
include:

1. The nature of the illness and the natural consequences of no treatment

2. The nature of the proposed operation, including the estimated risks of mortality
and morbidity
3. The more common known complications, which should be described and discussed.
The patient should understand the risks as well as the benefits of the proposed
operation. The discussion should include a description of what to expect during the
hospitalization and post hospital convalescence.
4. Alternative forms of treatment, including non-operative techniques [3]
Getting the patient’s consent does not necessarily satisfy the obligation of the physician
to have secured agreement for certain treatment; the patient needs to be informed. That
is because the agreement is between two individuals, one with knowledge that requires
years of medical training and the other without such knowledge. Ethical and legal views
have considerably larger expectations and demands from the doctor. The doctor is often
expected to be a teacher, educating the patient sufficiently to be able to understand the
terms of agreement. That is an awesome responsibility and practically impossible even
when the patient is familiar with medicine and with medical terms. Understanding the
terms is different from experiencing the condition. That is why in the legal parlance the
expectation for communication and explanation is said to be to the extent that a
“reasonable person” would understand.

Each patient has a different degree of interest in knowing the details. Some want to know
every detail of the treatment, operation, and even how it is done. Others may want to
know less than what they should know. It is important that each patient, or, if
appropriate, the family, know the essential benefits and risks of the treatment. Aside
from ethical or legal obligations, the more the patient knows about the treatment and the
process, the better the result in satisfaction and doctor–patient relationship.

The survival instinct is strong. One cannot and should not underestimate another’s desire
to live, no matter how futile or difficult the condition appears. This is a very important
issue to pay attention to in dealing with consent. Not infrequently, patients with
depression, frustration, and misunderstanding of the outcome may refuse or deny
themselves the potential benefit of a treatment only to change their minds later. In an
attempt to understand the patient’s position, one needs to give a clear explanation and
adequate time to enable the patient to clarify his intention. The issue is of paramount
importance when the patient is conscious but for varied reasons is unable to talk or to
express his or her thoughts.

A seventy-four-year-old female, a member of my family, with progressive supranuclear

palsy, was completely paralyzed in arms and legs, was fed through a tube, and was
unable to talk. The only way that she could communicate was by blinking her eye lids:
up meant no and down meant yes. Most close members of her family with a
compassionate attitude preferred that she would die and no longer suffer. Her sister
felt sick for a few days any time she visited her in the nursing home and felt that she
herself would prefer to die if she were in her place. Upon my suggestion, she asked the
patient if she still would want to continue to live; she responded yes by blinking her
eyelids down.

While some may want to have any additional days if they can, despite the suffering,
others may give up sooner and for varied reasons.

A sixty-five-year-old man with cancer of the larynx decided to forgo the chance for
potentially years of survival by having his larynx removed. He preferred radiation
 treatment to surgery; “I love to talk, read poetry, and enjoy conversation,” he said. “I
would not like to talk through a voice box; life would have no meaning for me that
way.”

Another patient did not think that an operation with a potential increase in life
expectancy of about six months was that desirable for him: “I lived for seventy years
without that disease; with it, that additional life is worth little to me,” he said.

A young man, who had become impotent because of cauda equina compression,
committed suicide; the alleviation of severe pain and regaining strength in his leg were
not enough for him.

The value of life is a personal matter; though the legal system may determine certain
monetary value for one’s life after it is lost, no one ought to determine the value of
another’s life so long as the person is alive.

The sacrifices of certain body organs or their function may appear trivial to some, as
compared with gaining a major potential recovery or gaining survival. To others, that
would be hard to take and may not be acceptable.

On one occasion, I explained the details of the operation for a large benign frontal lobe
brain tumor (meningioma) to a man about forty years of age. I explained the potential
good outcome and the benefit of the operation with 1 percent potential risks for
infection, paralysis, and for death. I also indicated that he might suffer unilateral
blindness after the operation because the tumor had compressed the optic nerve and
entered the orbit. He understood all of that and consented to the operation. As I was
about to leave, he asked where I was going to make the cut. I indicated that it would
be behind the forehead after the front part of his head is shaved. “No,” he said, “I do
not want to have the operation if my head is to be shaved.” Every potential
complication mentioned above was acceptable to him except partial shaving of the
head, despite knowing that the hair would grow back. After considerable additional
explanation, he finally agreed. Fortunately, there were no complications after the
operation. However, he decided to shave his entire head from there on; instead, he
grew a beard.

The fear of a change in looks or appearance cannot be taken lightly. Despite clear
explanation of the risk or benefit, a patient may injudiciously prefer a less effective
treatment or refuse an operation; the motive may not be apparent. When such issues
come up, it is important to ask the patient the reason for the choice. For what the patient
is afraid of may not happen.

Our body and self-image are important parts of our psyche; they influence our self-
esteem. We become adapted to our image and develop a style in presenting ourselves to
others. We gain real or perceived benefit from our looks, our clothing, and our
appearance. Because our looks influence others, it opens paths to friendship, jobs, and
marriage. A change in our physical appearance can have an adverse effect on all of them,
lower our self-esteem, and we may become depressed. A scar on the forehead or on the
head can become a stigma, and the person might be unfairly turned down for a job
despite being qualified. In addition, a scar on the face could become a source of
psychological disturbance and anxiety [4]. Abdulah and coworkers [5] studied children
with facial burns and found that the number of scars correlated with the degree of their
unhappiness; with more scars, there was less happiness and satisfaction. The authors
indicate that “survivors of burns may appear superficially to be adjusting well, while
harboring grave self-deprecating feelings.”

Hidden Fears
A patient may have an unwarranted view or perception and avoid the benefit of a
treatment or operation. For example:

Fear of becoming like a person known or heard about who had had similar
treatment, while the condition or circumstance is different
Hearsay or clichés like “My father told me, ‘Don’t you let anybody touch your
spine’” or “He is a surgeon; he just wants to operate”
Fear of having a tube in the throat or being on a respirator, while the use is
temporary
Fear of becoming disfigured, unattractive, dependent, sexually impotent; or fear of
losing the job, or disturbing marital relations. Although all these could occur in
certain cases, they may not apply for the patient’s planned treatment.
Lack of trust or belief bias toward the physician or the institution

Conversely, a patient may want to have an operation not yet needed or suited for the
condition, such as:

Better to have it before getting older, often in relation to joint and spine, while the
operation can be done when necessary
Prefer an operation to waiting, despite potential for spontaneous improvement
Looking for an operation for certain financial gain, just to prove the illness is not on
a psychological basis
A patient may suffer from Münchausen Syndrome

Communication would not be successful by a one-way explanation and giving

information; it is a mutual exchange, interaction, and understanding of the process of
giving and receiving. While one cannot clearly predict how a fearful patient would
respond or cope with the explanation of potential complications, it is still wise to have a
discussion and exploration of the patient’s feelings. Often the fear diminishes by being
involved in the process.
Experience versus Knowledge
Experiencing an illness is entirely different from knowing about it. The experience varies
in different people for the same illness; it varies even for the same person at different
ages. Except for conditions like the common cold and moderate trauma, few could know
ahead of time how they will experience an illness or an invasive treatment until they go
through it.

Once while running I twisted my ankle, tearing a tendon. I even did a long operation
the next day while standing several hours, despite the pain. After I finished the
operation, I mentioned that to an orthopedist colleague in the operating room. As he
saw my swollen ankle, he scolded me for having walked and stood on it, for he felt
more tendon fibers would be torn. He ordered me a wheelchair and to the cast room.

From the moment in the wheelchair until six months later when there was near
complete recovery, the experience was entirely different from what I had perceived one
goes through with discomfort and disabilities. Pain was only a limited part; the burden
of walking up and down the stairs, managing personal hygiene, and daily activities was
not easy. The thought of being dependent on others for rides, or even explaining
repeatedly to well-wishing friends who were asking about it, was disturbing.

On one occasion, I was not allowed to enter the airplane until either the cast was
removed or I got a confirmation letter from my physician that nothing was hidden in
the cast. Fortunately, I had my prescription book with me and they accepted my own
confirmation.

The burden of a torn tendon is not comparable with the severity of what one goes
through when needing a major operation, intensive care management, or chemotherapy.
Nor is it the same as the burden of permanent disability. Consenting to a treatment is
very difficult when the outcome is not clear. It is easier when there is hope for a
reasonable recovery as compared with that of a dubious future. In the end, it is still the
patient, when an adult and competent, who has the final word in accepting or not
accepting the treatment; others are advisers and consultants. Autonomy comes with the
burden of making decisions for oneself and choosing between options; often that is not
easy. The compassionate and the thoughtful communication of the doctor can make the
task less difficult.

Autonomy versus Paternalism

Little argument is required to justify the importance of respect for autonomy and to
denounce paternalism. Without autonomy, human dignity and individuality are in
jeopardy; with paternalism, exploitation and maltreatment never ends. Philosophers,
ethicists, and judges have eloquently explained their views in favor of autonomy and their
disapproval of paternalism. Without such rules, the social order would be in peril and
atrocities would undoubtedly take place under the guise of being good for some cause.
The experiments and research done on humans without their consent, pointed out earlier,
are examples of paternalism with disregard for autonomy of individuals.

As mentioned earlier, some experiments in the past were done not with the intention of
inflicting harm, but likely with the intention to do good for all. Nevertheless, the
autonomy of the individuals was ignored or not respected. Others were just cruel and
inhuman, going far beyond paternalism. In the Tuskegee study, the individuals, all
African-American, were denied their rights to be informed of what their disease was. Not
only, were they told that they had “bad blood,” they were led to believe that they were
being treated for their disease while they were not.[6] For whatever reason, the patients
were used as means toward certain ends, and that was unjust. Beecher put it best when
he wrote, “There is no ethical distinction between ends and means.”[7]

A certain degree of paternalism is still practiced in many cultures; though wrong, it is

mostly for the good of the patient to avoid emotional harm. That is different from that of
Tuskegee, where the good was for others, not the patients. Various matters such as fear,
denial, faith, and lack of education prevent some from paying attention to what is
explained to them; others may avoid asking questions. As an example, Marc D. Basson
and coworkers [8] studied 59 consecutive male patients for screening sigmoidoscopy,
before and after the procedure. They found only 5 percent of the patients knew any
alternative test to the procedure, only 19 percent mentioned possible complications of
bleeding or perforation of the bowels, and 93 percent recalled an opportunity for asking
questions. They further found that 22 percent actually asked questions, 60 percent read
none of the forms, 14 percent read all of the forms, and 39 percent could describe no
indication other than the doctor’s recommendation for the procedure.

Compassion and Sincerity versus Paternalism

Medical treatment is not a product to be purchased as one does with other goods; it is
prescribed with the intention to maintain or to improve patients’ health. It is, of course,
true that the patients have the autonomy to choose what is good for them. But there may
be a vast discrepancy between the doctor and the patient in knowing what is good for
treating the illness. Problems arise when a patient’s intention is to get better but he
refuses the only treatment that is appropriate for the illness or chooses one that is not.
There is no rational reason then for the doctor to participate. In addition, to participate in
certain treatments may be considered negligence or unlawful if the treatment is outside
the standard of care.

When the patient’s choice is significantly incongruous with his or her stated desire for
recovery, or the choice has nothing to do with recovery, there comes a definite need for
compassion and sincerity. To stand by and see a patient taking a choice that fails or one
that is contrary to the patient’s goal for recovery is neither sincere nor is it respect for
autonomy. Because patients come to us in part for advice and for guidance, we also play
the role of a teacher; it is our obligation to alert them if they make a poor choice. Due to
inadequate knowledge or educational background, a patient or a family member may
simply not understand the issue at hand.

After a detailed explanation to a mother about the benefit and potential complications
of an operation on her child for brain tumor, I indicated that the operation had a 2
percent risk of death. To make sure she understood it, I asked her to repeat what I
explained to her. She said she understood it: “You said the chance of making it was
fifty-fifty.”

Treatments and experiments done decades ago, based on paternalism and disregard for
autonomy, have justly created a well-deserved respect for autonomy and skepticism for
paternalism; that is admirable and important for patient care. Yet an inflexible
interpretation of autonomy and paternalism can sometimes cause harm to a patient who
appears competent but under stress is unable to make appropriate decisions. The
problem can be heightened if the doctor is concerned about litigation. Then by thinking
that he is respecting autonomy or is avoiding paternalism he may leave the patient with
a poor choice for therapy.

Several decades ago, a colleague of mine was extremely frustrated by a patient’s

constant refusal for an operation, the only treatment that could have salvaged his
deteriorating vision. This was despite the fact that the patient was seeking help for
recovery and the operation was associated with a small risk. Suddenly the doctor
screamed at the patient, stamping his feet on the ground, and said, “I have never met
such a stupid person who allows becoming blind.” Thereupon the patient accepted the
operation and afterward was extremely grateful to the doctor for saving his vision.

The issue here is that at times a pertinent philosophical view, good for all, does not apply
to an individual. In medicine, a person with a reasonably sound mind may suddenly and
injudiciously choose an option that causes disability or death without desiring that. The
task here is far from being paternalistic. The essence of the discussion here is about
compassion and sincerity to make sure we understand the patient’s real desires. One, of
course, does not have to go so far as to scream or to insult the patient. But one needs to
spend time and effort to come up with a shared choice that is entirely for the patient’s
benefit and for the doctor to avoid participating in a wrong choice.

One may still argue that to nudge a patient to make appropriate decisions for himself can
lead toward a slippery slope; nudge can lead to coercion, and coercion to harm. That is
obviously correct. But an ethically oriented person can see the difference. Time and
again, not only in illness, but also in other endeavors in life, we become grateful to those
who took time and stood by us, giving us advice, informing us, and helping us avoid
taking a wrong path.
Unintended Request
Once in the operating room, a professor of mine, working under the stress of an urgent
task, threw an instrument handed to him by the nurse and raised his voice: “Do not just
give me what I ask for! Give me what I need.” There are times in life that we know
exactly what we want but we ask for the wrong thing. That happens in circumstances
such as stress, anger, depression, having limited knowledge, or having a language deficit.
Patients may ask for treatment they heard about on the news, make decisions not
appropriate for their desired health, or refuse a measure best for their condition.

Recently I received a call from a “patient manager” representing the doctor. She
indicated that they are planning to discharge an elderly patient, a close relative of
mine. She was operated for a hip fracture the day before; the hope was for the patient
to be able to walk soon and the reason for operation was to make that possible. She
had requested to be discharged because her bed was uncomfortable, the hospital was
too noisy, and she thought she could rest better at home. The manager said they
“were just respecting her wishes.” However, the patient was still under the effect of
anesthesia and the narcotic medication she received for pain; her request was certainly
unreasonable. It did not take more than a minute to convince her that going home was
inappropriate for her. In fact her condition was so serious that, she died in the hospital
about a week later.

Unaware that it would be temporary, a patient may refuse to have certain treatments like
tracheal intubation, to be on a respirator, or to have chemotherapy. An important
element of the principle of autonomy is for the patient to have a “sound mind.” A request
or a decision is neither sound nor rational when the likely result is contrary to that which
the patient desires. That is different from when a patient fully understands the
consequences, yet refuses certain measures. An appropriate treatment is not necessarily
what the patient wants; it is that which is commensurate with what eliminates the
disease and suffering. Autonomy is the exercise of our real intention and real desire.
However, for varied reasons, a patient may be unable to see or to convey that desire.

Autonomy and Risk-Taking

At times, a patient may clearly understand the higher risk and wishes to undergo a
treatment that offers a reasonable chance for recovery. Yet, concerned about a high risk,
or perhaps for other reasons, the doctor may not recommend or undertake the needed
therapy.

Once, years ago, I was reluctant to operate on an over eighty-year-old man who was
suffering from back pain who also had a certain degree of cardiac condition. Some
months later, he was brought to the hospital in coma after having taken a large dose of
sleeping medication. A few days after successful resuscitation, he asked me why I had
 brought him back. When I mentioned that he had apparently taken too much sleeping
medicine, he said he knew; “You are not operating on me and I was trying to commit
suicide.” When I reminded him of my earlier explanation that the operation would have
had a high risk of around five percent for death, he chuckled. “I was trying to take a
hundred percent risk and end my life; the five percent risk is almost nothing.” He
continued, “I have pain, the medication upsets my stomach, makes me groggy, and I
do not enjoy life.” Fortunately after the operation he had no complication and lived
around eight years more without back pain.

It is good practice to prepare the patient’s condition both physically and mentally before a
major treatment or an operation, e.g., to adjust cardiac condition, blood pressure,
diabetes, weight reduction, smoking cessation, or waiting until the patient is mentally
prepared. However, there usually is a limit to the level a patient can be prepared, yet the
patient is in a real need of the operation or the treatment, and waiting too long can make
the condition worse.

A patient with severe back pain in a wheelchair and with difficulty in walking was
disappointed for being turned down for operation unless she lost fifty pounds. “I would
like to lose more than my doctor wants me to, but I tried and I simply can’t,” she said.
After a successful operation, she was extremely happy. It was interesting to see her
some months later, not only happy but having then lost more than fifty pounds.

It is hard to understand the suffering of a patient with pain, who is also afflicted with
another chronic and debilitating disease. Such patients may be depressed and unable to
lose weight or stop smoking, but they may be able to do so when the pain is diminished.
If the complication of an operation is higher than usual because of an underlying disease,
once the patient fully understands and is willing, taking a higher risk may be reasonable
in order to alleviate the suffering.

With continuous progress in medicine, the presence of advanced age and/or the presence
of another underlying condition may not necessarily be an obstacle for an operation. Not
infrequently a condition believed to be “inoperable” by one surgeon could have a
successful result by another one. In communication, a caregiver should never feel that he
or she is the judge with the last word. Unless there is a reasonable certainty for no
chance of improvement, there may be other physicians who could be of more help.

Communication with a Doctor as Patient

It is true that a physician knows medicine better than a layperson does. However, the
profession is too broad for any doctor to know everything. When we become ill, we may
become a different person. Not infrequently, a physician colleague or his close family
member consults us as patients. The physician may have a more optimistic or a more
pessimistic view of the illness, may have more fear or is in more denial, may have more
expectations, or may need more explanation than a non-physician. He may need every
bit of communication a layperson needs and possibly more. What I found helpful is to say,
“You may know everything I am about to tell you, but let me tell it anyway” and, “Please
ask me any question as if you were not a doctor and tell me what you think as a doctor.”
Good news is always welcomed and rather easy to convey. Even when delivered in a bad
manner, patients often excuse or forgive the shortcomings if they hear good news; to
convey bad news is entirely different. Bad news is still bad despite having been
anticipated; it is far worse when unanticipated. In either case, it needs to be
communicated or disclosed to the patient, to the family, and/or to those who represent
the patient. When something bad happens, it is not only the patient and the family who
feel bad, sad, and disappointed; we, as doctors, feel the same way. Even when
everything done was appropriate, almost everyone feels perhaps someone or something
could have done more or better. This is a natural and healthy feeling after any loss.

Despite every appropriate treatment, it is not unusual that when something bad happens,
one easily would blame others. Some blame themselves; others may relate it to a
supernatural cause. While the reason for the mishap(s) may at times be clear, often the
reason may be hidden somewhere in the past or is caused by an accumulation of varied
occurrences. Here is the time when experience, compassion, truth, and fairness in
communication count. One injudicious or inaccurate word can cause misunderstanding or
mistrust. An unfair or wrong allegation about a person, a system, or even an instrument
can cause unwarranted harm to those who are innocent.

Some may not understand the intensity of the stress or the anguish a doctor feels when
something bad happens. It can rob the confidence one needs to pursue work. In an
adversarial or competitive atmosphere, a person with few scruples might unfairly take
advantage of another person’s mishap or make an unwarranted complaint against him or
her. Technical performance like playing a musical instrument, acrobatic sports, or surgery
requires self-confidence; to undermine that person is unfair. At times, I encouraged my
junior colleagues to get back to the operating room as soon as they could when they felt
anguished by one bad result that was not necessarily their fault.

When I was an intern, I once observed a tragic event. A young child walked into the
operating room for a tonsillectomy. During the operation, he had cardiac arrest and
 died on the operating table. I noticed the surgeon pale, unable to stand, sitting on the
ground in a corner of the operating room. He was too shaken to be able to go to talk to
the family, and someone else had to do that. Years later, something somewhat similar
happened to a patient of mine. In my case, however, the child had a serious
neurological disease; without the operation, she would have died, and with it, she
would have remained seriously disabled. Perhaps it was a different case, but I think the
feeling was the same; I felt what the doctor must have felt then. Luckily, I could gather
my strength and went to communicate the news to the family.

Today, patients are often treated by multiple physicians and by ancillary caregivers; that
trend is likely to increase. Interns, residents, nurses, and chaplains can communicate
certain news very well; but in communicating bad news, especially when something
unexpected occurs, no one can replace the physician in charge. While it is stressful to
communicate a bad outcome and is convenient to have someone else accomplish this
unpleasant necessity, it is the responsibility of the doctor in charge to communicate with
the patient and/or with the family; it is also wise to do so. When the possibility of a
complication is predicted and conveyed in advance, and when there is a good doctor–
patient relationship, the task is much easier. In my case above, a detailed preoperative
communication with the family was extremely helpful. After a short period of silence, I
found the family very kind; they even tried to comfort me.

The discussion is best to take place in a calm, quiet ambiance where the patient, family,
or both can show or express their emotions freely. One needs to convey the issue
truthfully and compassionately, to explain exactly what took place if one knows it with
reasonable certainty, to avoid ambiguity, and to respond to every question asked.
Responding to a question is different from answering it; the patient or the family needs to
understand what has happened. When there is no known cause, or the cause might be
known later, it is best to give assurance for a follow-up response. However, when the
cause is known, to dodge, evade, or circumvent responding to a question is unfair and
may cause problems later. There are times when the expected response is a simple yes
or no, if one knows it; anything beyond that can create lack of satisfaction and/or trust.
For example, if asked, “Were you there when that happened?” the answer can be nothing
but yes or no. To intentionally describe the incident in complicated medical or Latin terms
is deceptive and can cause mistrust.

Despite being personal and confidential at the time, what is communicated must be the
same as what might have to be told later. In conveying bad news, one also needs to
explain the potential outcome, remedy, hope, and measures that will be taken to improve
the condition. In case of death, it is best to ask if there is the desire to be with or to see
anyone else, e.g., a chaplain. It is wise to stay off a subject not related to the case.
Philosophizing or rationalizing comments like He is now better off where he is, He is not
going to suffer anymore, or He was going to die soon anyway may not give comfort to
the family. If there is need for a post-mortem examination, it is appropriate to ask for it
at the end, not at the beginning or in the middle of the discussion. When there is a case
of brain death, one would best declare that unambiguously. Then, in appropriate cases,
someone could ask for organ donation.

Patient’s Response to Bad News

Elizabeth Kübler-Ross [1] divided the process of grief and dealing with death into five
stages. They are denial, anger, bargaining, depression, and acceptance. While her
research was for the most part related to patients in grief and dying, I believe such
behaviors can take place after receiving bad news. The intensity and the duration of each
stage varies based on individual age, personality, outlook on life, gravity, and the degree
of the hope one may have for recovery. In fact, we all are eventually dying persons and
can in degrees go through similar stages as we lose our various functions throughout our
lives. The difference is that the loss is gradual and we accept the defeat by adjusting to
the thought. The effect of any loss ultimately correlates with what it means to us, what
our expectation is, and the time or ability we have to replace, substitute, or deal with it.

Denial
Denial is a common behavior in our lives. The news may be so unbearable that, based on
an unconscious defense mechanism, denial takes place; we need to deny it to hold on to
our sanity. Denial is not always complete or permanent; it appears in different forms and
durations. We may hear the bad news but behave as if we did not, only to become
agitated when the news sinks in.

A woman, upon hearing the unexpected news of suicide by her husband, could not
accept his death. He had just recovered from an operation and was about to be
discharged from the hospital. She could not bear the thought of going in the room to
see him for herself. Instead, she kept asking if everyone was sure that he was dead.
Following several affirmative responses that he indeed did die, she became agitated;
“Why do you keep answering yes when I ask?” she shouted. “I know he is dead; don’t
keep answering yes.” Finally, when she brought herself to go into his room, she kept
pounding on his chest. “Why, why, why did you do it?” she asked. “You went through
all those miseries in your life. You didn’t do it then, but why did you do it now?”

A patient’s denial can give a false impression that the person is stoic and is able to
handle the news, yet shortly afterwards the person may go into a deep depression.
Denial may manifest itself as lack of trust or confidence in the source of the bad news.
Such patients may go around consulting various physicians at different institutions,
looking for better news. Denial may appear to be the reflection of mistrust or lack of
knowledge about the reputation of the institution or the physician. Denial may also occur
when a patient has a certain bias against the culture, ethnicity, or age of the physician.

Communication with a Patient in Denial

When the acceptance of the truth is intolerable, with denial as a defense mechanism, the
patient may gain a temporary emotional comfort. Unless one needs to make an urgent
decision, so long as the patient clearly hears the bad news, it makes no sense to break
such a defense early before the person is ready. Each person needs certain duration of
time to accept reality. I heard of a professor of pathology who had had difficulty to
confirm the diagnosis of cancer in the biopsy of his prostate, while the diagnosis was
obvious to his residents. A problem arises, however, when an urgent or serious medical or
surgical treatment needs to take place and the patient denies the need. That may occur
when there is misunderstanding, fear, lack of trust, or the influence of faith. By
understanding the source of denial, one may be able to rectify the problem.

A patient with osteomyelitis of the skull, with a large fistula draining malodorous pus
from the forehead, was refusing an operation for many months; various antibiotic
treatments had failed. Despite detailed explanation and encouragement by multiple
physicians and by her husband, she did not accept an operation, believing that the
wound would get better by itself. Finally, after several inquiries as to the reason, she
expressed her belief that it was with God: if God wanted, her wound would heal. After
explaining to her that, presuming God wants her wound to heal, the healing must come
through the surgeon’s hands—God would not come down to do that—she then accepted
the operation. The outcome was excellent, making her and everyone else happy.

Communication with an Angry Patient

It is important to determine, as soon as possible, the intensity of the anger, the way it is
expressed, and the patient’s or the family’s level of attachment to reality. It is equally
important to stay calm under all circumstances; one angry person is enough. When there
is no evidence of threat or violent behavior, nor is there a known history of it, it is wise to
stay with the patient and/or the family. In fact, leaving or ignoring the issue can then
make the patient angrier. If there is evidence of violent behavior, physical threat, or any
psychiatric problems, it is best to leave and seek appropriate support. Such circumstances
may require expert psychiatric evaluation, possibly accompanied by persons physically
able to control the person.

When I was a resident in psychiatry, one night a patient opened my office door while I
was on the phone and politely asked if he could come in. Within seconds of my
affirmative response, he slapped me in the face so violently that I was dizzy for hours. I
then asked the aids to restrain him, gave him tranquilizer injections, and in the
morning asked the professor if we could transfer the patient to a mental hospital more
appropriate for violent patients. “You can do that if you wish,” the professor said, “but
you have punished him enough, despite the fact that it was your fault.” “It was my
fault? I didn’t even touch him; he slapped me,” I replied. “I know,” he continued, “but
you retaliated by tying him to his bed and gave him all those injections. It was your
fault; you should always keep an arm’s length away from anyone until you know whom
 you are dealing with.”

Once the issue of violence is ruled out, one needs to listen attentively and
compassionately to the patient to determine the source, the extent, and the direction of
the anger. It is not fair, nor is it wise, to use excuses, to rationalize, or to support
individuals if the patient is right and has reason for being angry. Verbal or other means of
apology are in order, the sooner the better. No matter how real it may be, it is unwise to
resort to or appeal to comments like “I was very busy; we have a lot of sick patients,” “It
is our policy,” or “You are lucky; it could have been worse.” The apology has to be
sincere, and the patient needs to understand it as such. A glib apology or a statement
like “I just apologized; what else do you want me to do?” may make the person more
irritable.

At times, a patient may mistakenly feel ignored, disrespected, or treated in a differential

way. For instance, in a waiting room for multiple physicians, a patient may not realize
that a person called in sooner was to see another physician and may feel preference was
involved. Or a patient may not realize that the one seen sooner was urgent or in need of
certain medical attention. It would be unwise for the doctor or the staff to ignore such
issues. Usually the patient would easily become content with a reasonable explanation.

On the other hand, a patient may be angry or even act angry to manipulate the system,
requesting a certain unwarranted certificate or inappropriate medication.

A patient was very angry because her doctor did not think that she was qualified for a
permanent handicap-parking license plate, while a temporary one was sufficient; “I
gave all that money to the hospital and you can’t even spend a second to sign a paper
for a permanent parking for me,” she said. Another undeserving person put on an act of
anger and implied lawsuit: “I need to have a permanent disability certificate, or I have
to see my lawyer to find how I can get money to live.”

Despite the possibility that such a person may try to retaliate or unjustly attempt to
embarrass the caregiver in surveys or through writing letters, if a polite explanation is not
sufficient, to feel intimidated or yield to such requests is unwise or unethical. Nor is there
need for an apology. In some businesses, they teach their employees to apologize to
customers for almost anything. Such an apology often appears bogus, simply offered to
comfort or to quiet down the customer. An apology is an expression of remorse for
something done wrong, a failure, a mistake, an insult, or something that should not have
occurred. In medicine, one does not offer an apology glibly or undeserved; it can be
misinterpreted.

Sometimes it is hard to know where the patient’s anger is coming from. It may be of help
to say, “Please tell me what made you angry” or, “I am not sure I can be of help if I do
not know what made you angry.” Certain conditions like the followings give a false
appearance of anger or appear to be lack of cooperation by patients:
 Patients with certain speech or motor deficits
Patients who are confused or somnolent and have pain, feel uncomfortable, have a
distended bladder, or are unable to express themselves
Patients who are restrained and are uncomfortable in one position
Patients who are uncomfortable and cannot talk for varied reasons such as having
a tube in the mouth or having facial injuries

Before prescribing any tranquilizing or sedative medication for a patient who suddenly
seems angry or uncooperative, one needs to know the prior events, the condition for
which the patient is in the hospital, the medication, or the treatments received.

A patient was reported to be “angry and uncooperative” and wanted to sign himself
out. Shortly afterwards, it was realized that he was confused and had elevated carbon
dioxide retention caused by pulmonary embolism. For another patient, his doctor
prescribed valium through a phone order, simply based on the nurse’s suggestion that
the patient was “restless and uncooperative.” Before carrying out the order, further
evaluation by others indicated that the patient had a mucus plug in his trachea, making
him unable to talk. The valium could have suppressed the respiration further, with
disastrous results.

Communication and Naked Truth

Telling the truth is the essential duty in communication, but naked truth can hurt; one
needs to think of timing when communicating bad news. One of the most disturbing and
ill-timed communication I ever witnessed was the case of a young man with a brain
tumor. The case indicates why even minutes can count for a communication to go wrong:

The patient was the only one in his family with a college degree and was the center of
attention and pride of his family. Shortly after he got his first job, he had a seizure and,
at operation, we found a malignant tumor, a glioblastoma. His mother could never
accept her son’s illness, let alone his death. A year and a half later, when he went into
a terminal coma, his mother, with a large family that came from abroad, would not
leave the hospital; they all slept in a family room at night.

The night that seemed to be his last, I decided to stay in my office at the hospital,
although they were well prepared and expecting the inevitable. I instructed the nurse
to call me first should it happen so that I could talk to the family. Somehow, the
instruction was not communicated to the next shift and the nurse called the resident
first. As I was walking fast behind the resident before he could get to the family room,
he got there first and without even turning the light on, he announced the patient’s
death. Imagine a dark room, full of people shrieking, crying, and falling over each other
as they tried to wake up and get up when they heard the sad news.

Even a person expecting bad news may become upset and more saddened when hearing
the news, for there is always a shred of hope or denial. An important part of the interview
prior to evaluation is to get to know the patient and the family to decide how to
communicate with them, should an unfavorable diagnosis, incident, or complication take
place. A patient may want to be with a member of the family or a friend; others may like
more privacy for the discussion. Occasionally a family requests that they not be called in
the middle of the night if a person is expected to die; for various reasons they may not be
able to handle the news.

Communicating Life Expectancy

We all expect to live certain years based on family or regional life expectancy, or a
duration based on an optimistic or pessimistic view. We seldom become alarmed or
become afraid when we are not ill. However, when we become ill, especially when the
illness appears serious, life expectancy becomes a matter of concern, often associated
with fear. The patient or the family may even ask that question directly without being
ready to hear the answer. The patient is entitled to the truth; especially when such a
question is raised, the doctor is obligated to respond. Yet one has to have the truth
before giving it.

The closest estimate about life expectancy of a disease can be done based on its median
survival. We cannot determine the time of death of a patient unless the condition is so
terminal that we can estimate it in days or in hours. The patient needs to understand the
terms used; some may take the median survival as the amount of time they can expect
to live. A patient once told me that his doctor gave him one year to live; “It is now two
years later,” he said. “Every morning when I get up and look into the mirror, I wonder if
that is me.” To discuss life expectancy based on median survival for a disease is more
truthful than that of a specific person. The patient, however, needs to understand what it
means and what effect variables can have on survival. To discuss median survival can
also give hope to those who think optimistically to be among those who live longer.

Preparing the Patient for a Potentially Serious or a Malignant

Disease
Facing a disease may actually be more frightening than going through it. By participating
in making appropriate shared decisions with the doctor, the patient may find his fears
reduced. With technological advances, we now can diagnose most diseases. We also
often have the statistical figures to estimate the average outcome, complications, or
duration for recovery for most of them. But we cannot estimate well the emotional effect
of a disease on an individual, the stress of which can surpass the physical effects. It is
wise to discuss first a general outline of the essentials as we know them, and give further
explanations as evaluation and treatment continue. Often it is not necessary to give a
detailed itinerary as if one were going to go on a trip. That is especially true in
circumstances where one cannot be certain of the outcome, the response to the
treatment, or the likely need for course corrections.

An increasing number of patients get information from the Internet or from television,
newspapers, or magazines. This can improve public health by awareness, involvement,
and a search for early evaluation. But, some patients may erroneously assume that the
information applies to their condition. Furthermore, the scientific authenticity of some of
the medical information on the Web may be partial, inadequate, or inaccurate. It may be
difficult for a patient to sort that out. In addition, some anxious patients may seek
opinions from others who may not have professional expertise about the condition. When
there is evidence for this, it would be of great help if the doctor in charge would discuss
what is applicable to the patient’s condition.

Communication by the Leader of the Team

Patients may receive evaluation and treatment by various physicians and staff. Although
appropriate members (residents, nurses, etc.) can communicate many issues, it is best,
appropriate, and wise that the physician in charge or the leader of the team communicate
the following:

Recommendations and discussions for intensive and risky treatments, operations,

invasive tests, and consultation
Sudden or unexpected events, the need for transfer elsewhere, or discharge
The outcome of an operation, favorable or unfavorable findings, complications, and
expectations
The report of a test that is disturbing, unexpected, misread, or mistaken
Future goals, the need for follow-up, referral, or termination of relationship
The news of sudden change in plan, cessation of care, or death

Deserting the Patient with Bad News

No matter how appropriate a treatment may be, if an unexpected or unfavorable result
occurs, an unhappy patient or the family can develop doubts, express displeasure, or
even make unfair allegations. The doctor may feel insulted or disappointed and take a
distant approach. Indeed, this is an important time to try to stay with the patient or with
the family to respond to their concerns. When there is anger and mixed emotions, a true
and courteous explanation may not be acceptable in the beginning. After a while, reality
may sink in and they may even apologize.

Deserting or avoiding the patient at such a time is not professional behavior. This is the
time when the patient and/or the family need support, compassion, and understanding. If
the doctor feels too insulted to be able to handle the situation, it is best to give a specific
time to the patient for coming back to discuss it further. To leave the patient and/or the
family with a false impression may imply guilt and may even cause unwarranted
litigation. In a study of settled malpractice suits filed against a large metropolitan medical
center, Beckman [2] and coworkers found that in lawsuits by forty-five plaintiffs, 32
percent were caused by deserting the patient, 29 percent for devaluing patient’s and/or
family’s views, 26 percent for delivering information poorly, and 13 percent for failing to
understand the patient’s and/or family’s perspective.

In the end, few of us can know how we take the bad news that removes our hopes. In
communicating bad news, we cannot take comfort in having simply told the truth; the
comfort may come from having helped a hopeless patient who has heard the truth.

Communicating Errors
Error is defined as “failure of a planned action to be completed as intended (error of
execution) or the use of a wrong plan to achieve an aim (error of planning). An error may
be an act of commission or an act of omission” [3] (p. 4). An error may or may not cause
harm, may or may not be detected, and its cause may not be known. As in the game of
chess, the error may not be in the last move or even in the one prior to the last; it could
be in any move, even in the first move. Furthermore, the error could be or could have
been corrected in later moves, with or without its occurrence being recognized. In
medicine, errors do happen and can cause the patients harm. While an error may cause
harm, it may not necessarily be related to negligence. Negligence, according to the
Oxford Dictionary, is failure to use reasonable care, resulting in damage or injury to
another.

In 1991, Brennan and coworkers [4] reported the review of 30,121 records, from 1984 of
51 randomly selected acute-care, non-psychiatric hospitals in New York State. They
reported a 3.7 percent occurrence of adverse events in hospitalized patients, of which
27.6 percent were due to negligence. They indicate that 70.5 percent of the adverse
events caused disabilities that lasted less than six months, 2.6 percent caused permanent
disabling injuries, and 13.6 percent led to death.

As a result of this and other studies, Congress apportioned $50 million in fiscal year 2001
for a major federal initiative to improve patient safety research and directed the Agency
for Healthcare Research and Quality (AHRQ) to establish a Center for Quality
Improvement and Patient Safety [3] (p. 25).

During the past two decades, various attempts, such as establishing quality assurance,
morbidity and mortality conferences, education, patient safety committees, and use of
technology, have been made by medical institutions to diminish the frequency of errors.
Yet, “there is much more work to do,” as noted by Woo, e.g., indicating that fewer than 3
percent of hospitals have implemented computerized drug ordering systems, which one
study found to reduce medication errors by 86 percent [5]. In a review of 212 adverse
events and 130 close calls in and outside the operating room, Neily and coworkers found
“the most common root cause of events was communication (21.0 percent)” [6].
When an error takes place that causes a patient harm, the first important task is, of
course, to correct it, if the need for correction is immediate and possible. The second
important task, as it is for bad news, is to communicate the error to the patient/and or
the family, especially if the error did cause harm or could create future harm. The third
important task is to communicate the cause of the error if it is clearly and positively
known. However, if the cause is unknown, one simply can say that the cause is not yet
known; it will be investigated and will be explained as it becomes known.

When an error is in progress, it is important to stop it as soon as that can be done. For
any illogical reason to continue is a bigger error. For example, just prior to a procedure or
an operation, or even during one, a doctor may realize that to pursue it is wrong. It is
prudent to stop and terminate it appropriately. That is despite any perceived
embarrassment or any potential disciplinary action the doctor may have to face.
Otherwise, in addition to further harm, one may turn an error into negligence. An error
may not cause any significant bodily or emotional harm but may cause a certain degree
of expenditures, delays, or inconvenience, such as having ordered a noninvasive wrong
test, mix-up in scheduling, or an unreasonable delay in performing certain tasks. These
are still errors; it is only fair that the patient hears about them and receives an
appropriate apology.

In medicine, there is continuous new acquisition of knowledge and technologies that

improve diagnoses and treatments; new people and new machines arrive on the scene.
Despite every effort, there will still be errors. Errors are made by humans and can occur
in every human endeavor. It is said that errare humanum est. While to err is human, the
suffering that so many go through calls for a duty for every human to attempt to reduce
it, not only in medicine but in every endeavor. For, about error, it is also said,
“Perseverare diabolicum,” to repeat that is the act of the devil.
Patients may wish to involve close family or sometimes others in receiving information
about their illness and treatment. With adults, it is the patient, however, who is entitled
to know every detail about the condition; others are limited by the amount the patient
allows. Some patients may wish to make certain restrictions. Except for the restrictions,
any information others receive is to be the same as what the patient receives or would
have. The degree of the family involvement in giving or receiving information varies in
different cultures; it is usually based on custom, geography, ethnicity, and law. While a
certain attitude may be common in a certain geographic region or culture, one cannot
assume that it would apply to every patient and every family in that culture. Furthermore,
the desire for participation or for restriction may in part be related to interpersonal
relations. In general, in most cultures, there is more family involvement when the illness
is serious and requires hospitalization or operation.

Once the degree of the involvement is decided, communication with the family is
important. The family usually takes some responsibility and burden of care for the
patient, makes proxy decisions when the patient is unable to make his or her own, and
often advises the patient on the choice and direction of the treatment. The family then
needs to know a reasonable amount of information to accomplish the tasks or make
decisions. Traditionally, parents, spouses, and children are recognized as next of kin; the
law recognizes them for involvement in certain issues and arrangements. Adults may
have additional or individual arrangements for their health information with whomever
they prefer. A patient may come with a member of the family and/or a friend for
consultation or treatment but may or may not want their presence during conversation or
treatment. One then cannot assume the patient would want the person’s participation in
follow-up information. Recently, a patient became very upset when she heard that the
results of her simple blood tests were first given to her husband on the phone.

From the very start in a doctor–patient relationship, it is important to ask the patient’s
desire about relatives or friends who can receive information or could as a proxy make
decisions, should the patient under the effect of anesthesia, medication, or other
circumstances be unable to do that. It is also best to make a note of it in the patient’s
record, especially if the patient does not have or did not bring documents regarding
power of attorney and/or living will. It is preferable to ask about these documents when
taking the history rather than when one explains potential complications or during the
process of obtaining consent for treatments. An abrupt question about them at a wrong
time may make the patient uncomfortable and unwarrantedly think that the condition is
serious.

On one occasion a patient became alarmed and frightened when, during an intravenous
injection prior to a small operation, she was asked if she had a living will.

Based on curiosity, concern, or good intentions, a person or a friend may seek information
about a patient in person or by phone. One needs to make sure that the person is
authorized by the patient or by law to receive it. Because the identity of the person on
the phone is hard to confirm, it is best to avoid phone communication unless appropriate
identification and authority is assured, likely through a password or another identification
method. Confidentiality of patients’ medical information and records is essential; it is a
part of a person’s autonomy. In recent years, confidentiality has become so restricted
that occasionally it is even beyond a patient’s desire, for it may slow down or delay
transferring information needed.

Communication with the Family about the Patient’s Operation

Once an adult patient decides to involve the family in receiving information, it is best to
discuss the details about the operation with the patient while the family is present. The
discussion with the family is essentially the same or would be the same as with the
patient. Any discrepancy in communication could create confusion or misunderstanding
among them. The family needs to know approximately the duration of the operation, the
duration it takes to prepare the patient just prior to the operation, and the time after the
operation when the family can see the patient. It is important that the family know in
what shape or appearance the patient would be when they first see the patient after the
operation. For example, it is best if they know if the patient would still be asleep,
intubated, connected to any machine, or has an unusual dressing.

It is amazing how appreciative the families are when they receive some information
about the patient during the operation, such as a phone message from the surgeon that
“everything is going well and the operation should be finished in a certain duration” or
“the operation is about to be finished and the doctor will come to talk to you when the
patient is out of the operating room.” If there were a certain unexpected delay in the
start or duration of the operation, a simple message about it would comfort the family. If
there is any serious complication, unexpected event, or the need for a significant change
in the type of operation, it is important that the surgeon discuss that via the phone and, if
possible, preferably in person with the family. After the operation, it is the personal
meeting of the surgeon with the family that gives them the greatest comfort and
confidence, rather than communication by phone.

Communication with Parents of Sick Children

Children receive medical care believed to be in their best interest. Unlike a competent
adult who can decline an appropriate treatment, a child, though informed, may not.
Based on religious views, parents may refuse certain lifesaving treatment for themselves,
but the law may not allow that for their children. According to the United Nations
definition [1], a child means “every human being below the age of eighteen years unless,
under the law applicable to the child, majority is attained earlier.” Because a child needs
certain duration to develop experience sufficient to deal with or respond to intricate social
issues, parents or guardians, biologically or socially, have become charged to protect the
children until they become competent adults. To have order and legal status, the duration
is legally considered to be eighteen years in most cultures. With legal emancipation, the
age could be less for certain issues.

In general, when children become ill, they have the same concerns, worries, and
anxieties that adults have, and they need communication appropriate for their age.
Except for certain specific issues with teenagers, communication with children often works
best when done simultaneously with their parents, unless the child is seriously ill and
cannot participate. Despite considerable variations in children’s background, knowledge,
and experience, we can roughly divide the communication approach into three age
groups:

Infancy and early childhood prior to language development

Pre-adolescence
Adolescence

During Infancy and Early Childhood

Even in late infancy, the child likely receives certain indirect cues during discussion with
parents. The stress in parents’ voices, the presence of strangers, previous experience
with healthcare personnel, and silence or crying of children around have a lot to do with
how the child perceives his or her environment. Usually children are not comfortable with
strangers and with clinical examinations. In addition, the child does not usually
understand the significance of pain. No matter how slight the pain, the child may take it
as a threat. Even a gentle touch in the process of an examination can cause stress. Later,
when they trust the examiner, they begin to relax until some unexpected event occurs.
When protected in parents’ arms or comforted by the parents’ presence during a
discussion, the child would gradually become familiar with faces and the presence of the
doctor, staff, surroundings, and equipment.
Examination conveys a form of communication and rapport with infants. So much of the
examination, especially neurological, can take place by observing an infant when in the
parents’ arms or when the child plays or crawls. One can easily evaluate movements,
coordination, weakness, and eye movements without getting too close to the child.
Touching or palpating is best to be done at the end. Unless there is concern for spinal or
peripheral nerve involvement, sensory examination with pinpricks can hardly help
diagnose any illness of this age group. Today, there is seldom the need to hold the infant
and small child forcefully to look at the fundi of the eyes. When there is a bulging
fontanel or suspicion for an intracranial lesion, the infant most likely requires a CT or MRI
scan under sedation. Then, when the infant is drowsy, one can evaluate the presence of
papilledema or retinal hemorrhage. That would eliminate high venous pressure and
further rise of intracranial pressure when holding the head or the body forcefully, which
limits expansion of the chest.

As for any age, the child needs to trust the doctor before an amicable and appropriate
doctor–patient relationship can develop. For example, avoid tasks that cause even slight
pain such as injections, removal of tape, and change of bandages. It is better to leave
such tasks to others on the team.

During Pre-Adolescence
Once the child is able to talk, one can direct some of the questions and explanations to
the child in front of the parents. That would make the rapport with the child easier and
facilitate future discussion, explanations, examinations, tests, and procedures. Because of
varied prior experience with doctors and nurses, each child may have a different comfort
level before opening up to a new nurse or doctor. If one begins to examine them right
away without any rapport, they may withdraw and make the examination difficult. By
directing questions or explanation to them before examination, one may learn how to
deal with them. By encouraging questions, one can learn about their concerns and learn
how to respond. Communication often is more comforting and effective when the child
receives it together with the parents. This also helps to avoid hearing it as second-hand
and may help parents not to have the burden of explaining it to them.

This age group may not have much concept or fear of the distant future. Their concern is
basically about what they perceive is about to happen. While parents need to know the
details, children mostly need to know the immediate plan, particularly if the future is not
known or clear. It would comfort them to discuss the experience they may have during
and after a procedure or an operation. As it is with adults, they certainly have a good
deal of fear of pain or fear of the unknown. Prior to a procedure or an operation, they
need to get some idea about the potential degree of pain they may have and the way it
is prevented or relieved. It is amazing how some children take the process as well or
better than adults do.
During Adolescence
Communication with this age group is often easier, but can at times be more difficult and
require more experience. Despite the need to respect children’s feelings and views, their
parents are still in charge and need to give consent. It is best that parents and the
patient hear options, potential benefits, and side effects together but to direct
communication to the patient. At this age, interpersonal relations vary a great deal in
families. Some teenagers have no problem discussing the issues and making decisions
together with parents. Others may feel more independent. The best choice for treatment
is one that is medically sound and rational while equally acceptable to the parents and to
the child.

Based on background knowledge, religion, or ethical values, at times parents may choose
a treatment that is not in the best interest of the child or they avoid a treatment that is in
the best interest. Sometimes an appropriate choice by parents may not be acceptable to
the child. One may have to allow some time to them, if possible, to come to an
agreement, to try to negotiate for an option, or to elicit reasons for their concerns.
Misunderstanding or miscommunication could be one source of disagreement. But, if the
parents insist or attempt to deny the treatment that best suits the child, the physician
likely needs to seek ethical or legal advice. In the case of Jehovah Witnesses, with
parents attempting to deny their child a needed blood transfusion without which the
child’s life could be at risk, the court will likely give permission for the transfusion.

There are issues like contraceptives, pregnancy, and venereal diseases where the
teenager may not need the consent of the parent. The legal age and the condition for
such issues vary in different states and different countries. Unless a physician is certain of
the local law, it is wise to consult the experts. Vic Larcher [2] indicates that in England,
Wales, and Northern Ireland, adolescents aged sixteen to eighteen can consent to
treatment but cannot necessarily refuse treatment intended to save their lives or prevent
serious harm. Adolescents under sixteen may legally consent if they satisfy certain
criteria.

Parents of Children Suspected of Negligence or Abuse

Child abuse or neglect is a most unfortunate social problem, causing harm and disabilities
in children. Neglect and abuse are serious failures in the duty of those whose
responsibility it is to nurture and protect children. The National Incidence Study (NIS) is a
congressionally mandated, periodic effort of the United States Department of Health and
Human Services. They indicate [3] that during 2005–2006, more than 1.25 million
children experienced maltreatment; 44 percent were abused, of which 58 percent
experienced physical abuse.

The tragedy is not limited to the abuse or crime alone, but that it is often done by
parents who, by instinct, love their children and nurture them. According to the US
Department of Health and Human Services [4], in 2007, one or both parents were
responsible for 69.9 percent of child abuse or neglect fatalities; 27.1 percent of these
fatalities were perpetrated by the mother acting alone. They also indicate that 42.2
percent of fatalities are in children younger than one year and 75.7 percent are in those
younger than four years. Our study [5] of 190 cases of head injury in abused children
revealed that 63 percent were one year or younger and 89 percent were four years or
younger.

The Federal Child Abuse Prevention and Treatment Act (CAPTA), (42 U.S.C.A. §5106g)
[6], as amended by the Keeping Children and Families Safe Act of 2003, defines the term
“child abuse and neglect” to mean, at minimum:

Any recent act or failure to act on the part of a parent or caretaker, which results in
death, serious physical or emotional harm, sexual abuse or exploitation, or an act or
failure to act which presents an imminent risk of serious harm.

The term “child”

Means a person who has not attained the lesser of—

(A) The age of 18; or
(B) Except in the case of sexual abuse, the age specified by the child protection law of
the State in which the child resides.

Communication regarding abused children is a sensitive issue, requiring care and

diligence. It is essential not to mix up issues when one communicates with the following
parties:

Communication with the parents suspected of child abuse

Communication with governmental authorities
Communication as a witness in the court

Despite suspicion for neglect or abuse, parents require the same communication
regarding the child’s illness that parents of other ill children receive. They need to be
treated with understanding and compassion. One needs to listen to them to discover the
history of the events and circumstances they believe caused the illness, their opinion and
explanation, and any information that they can give to help diagnosis, treatment, or
prevention of the condition. At this stage, one has to remain as physician, not being
judgmental, critical, or accusatory. Otherwise, it may discourage parents from giving
information, and they may withdraw. In case they are innocent, it is extremely unfair and
traumatic to burden them with an unjustified accusation at a time when they are facing
the illness of their child.

On one occasion, the parents of a child who suddenly became unconscious were
 accused of abuse. The parents, who had limited understanding of English, were
devastated, not only by the child’s condition but also by the accusation. By the time
that the child was brought to the hospital, the police were already on the scene. Our
study revealed that the child had subarachnoid hemorrhage caused by rupture of an
aneurysm in the brain resulting from bacterial endocarditis. It took several months to
help exonerate the parents of the allegation.

That anecdote, though unusual and rare, indicates the potential harm a person can cause
by a rush to judgment and by making a wrong accusation. This does not mean that one
should avoid reporting the matter to authorities when abuse is suspected.

To suspect child abuse or neglect can be easy in the presence of conditions like burns,
fractures, and ecchymosis in a small child who requires adult’s protection. While there
may be no intention for abuse, failure to protect the vulnerable young child is negligence.
Head injury could at times be difficult to diagnose when there is abuse or neglect. That is
because injuries to the brain in infants can simulate conditions like meningitis,
encephalitis, seizure disorders, malnutrition, or respiratory infections. Unless one has a
high level of suspicion, the diagnosis may be missed or delayed. It may be unimaginable
to think that one, especially a parent, could cause such harm to an infant, but it does
happen.

In 1946, Caffey [7], a pediatric radiologist, reported six children with multiple fractures of
long bones who were suffering from chronic subdural hematoma. Unaware of the real
cause and puzzled by such a combination, Caffey concluded that fractures of the long
bone were “a common complication of subdural hematoma” and felt that the mechanism
was “obscure.” While unaware of the cause, his observation was very important. Kempe
[8] later coined the “Syndrome of Battered Child” and wrote his observations in 1962. His
report together with Caffey’s paper became significant steps toward recognition of the
intentional harm, and gradually the term “child abuse” became popular. Caffey later
contributed to this subject by describing the practice of manual shaking of the child as a
cause for intracranial bleeding [9], 10.

Numerous medical papers, news reports, and laws over the past five decades gradually
increased awareness. The discovery of CT scans contributed immensely to the ease and
early diagnosis of head injuries; later, MRI contributed more, but at present still the CT
remains the easiest and the fastest way to diagnose head injury. Unlike with traumatic
injuries in adults, in which the history of the events is given, in child abuse or neglect the
history of trauma is often held back, deceptive, minimized, or convoluted. The child is
often brought to the doctor or the emergency room with a history that does not make
sense. In our study of abuse and neglect in children [5], we found the following:

A history of sudden apnea, loss of consciousness, or deterioration in an apparently

previously healthy child
Raised intracranial pressure, bulging fontanel, and/or coma without a definite
 known cause or sequence of events
Illogical explanation for the sudden change in the infant’s condition
History of an insignificant trauma that is incongruous with the intensity of
symptoms
Previous repeated visits to emergency rooms or clinics for vague reasons
Injuries to skin, scalp, and extremities without convincing explanation
Evidence of neglect in hygiene or lack of visits for routine childcare and
vaccinations

Often a history of trauma is given, but that does not correlate with the intensity of the
injury. For example, the family may say that the child “fell from the bed,” “was pushed by
another child,” or “suddenly passed out while in my arms.” It is unlikely that trivial
traumas cause severe injury. Through a voluntary survey, Helfer [11] and coworkers
studied falls in 161 children aged five years or younger, none of whom suffered any
serious, life-threatening injuries. He found that in 80 percent of 176 incidences, there
were no observable injuries. The falls were from beds or sofas ninety centimeters or less
in height, five from a height of approximately 120 centimeters (forty-eight inches) and
two from approximately 150 centimeters (sixty inches). In thirty-seven cases (17 percent)
in which there were injuries, the injuries were “non-serious” and consisted of conditions
like bumps, lumps, bruises, scratches. In six (3 percent), the injuries were more serious:
they consisted of three fractures of clavicle, two fractures of skull, and one of the
humerus bone. Two had fracture of the skull with no serious brain injuries. The author
also studied eighty-five children of the same age group falling to the floor while they
were in the hospital from heights of approximately ninety centimeters. They found no
apparent injury in fifty-seven cases; there was one skull fracture in a child falling from an
emergency room’s cart with no serious or apparent sequelae, and others with small cuts,
scratches, and/or bloody noses.

Communication with Governmental Authorities

Once there is a reasonable suspicion of child abuse or neglect, one needs to report the
incident to the appropriate authorities. Reporting of child abuse and neglect is mandatory
[12]. Many states impose a penalty for failing to report, often in the form of a fine or
imprisonment. They also impose penalties against any person who files a report known to
be false. They indicate that each state has laws requiring certain people to report
concerns of child abuse and neglect. While some states require all people to report their
concerns, many states identify specific professionals as mandated reporters; these often
include social workers, medical and mental health professionals, teachers, and childcare
providers. Most states have hotlines to call for reporting child abuse or neglect. Each
institution likely has a certain office, committee, or social service department that can
help reporting to appropriate Child Protective Services.

The investigator is to determine if the report for child abuse is “indicated” or “unfounded”
with eventual decision if there should be an indictment against the person(s) believed to
be the perpetrator(s). In addition, the social worker would want to find out the conditions
and circumstances of the home, such as (but not limited to): presence of sibling(s) and
their health status, the presence or periodic visits of relatives or friends, the social or
physical issues that can promote abuse or neglect, the urgency of the need to help a
family in stress. While such evaluation or investigation is in process, it is wise for the
physician to be in communication with the Child Protective Service worker about the
child’s disposition and location for discharge after treatment.

Communication as a Witness in the Court for Child Abuse

If indictment occurs, the treating physician may be subpoenaed usually as fact witness to
testify before the judge and/or the jury about the facts he or she knows about the case.
It is essential to remember that we, as physicians, are not prosecutors, defense lawyers,
or judges. The main purpose for our presence there is to respond truthfully and
dispassionately to questions asked about what we know about the case. To accuse an
innocent person of a crime he or she did not do is a major offense.

Communicating with Family of Patients with Serious Illness

With digital technology, better diagnostic techniques, and high cost, admission of patients
to the hospital becomes limited to those requiring intensive care unit (ICU), major
operations, or treatments that cannot be done on an outpatient basis. Often the doctor
meets the patient and/or the family for the first time. The needed bond and trust may be
curtailed at a time when a major medical or surgical decision is to be made. At times, this
can become a problem if the patient’s condition is serious or is deteriorating. Or, because
of rotation or duty hours, other doctors or nurses may have to take over the care. Then
despite an appropriate therapy and management by other caregivers, it may not be easy
for the patient or the family to adjust to such changes, especially if they receive
unexpected or contradictory information. Thus it is wise to inform the family in advance
that despite the change in the staff, the goal for treatment remains the same.

ICU Mortality
The ICU mix of patients differs based on geography and institutions. Some are designated
as surgical, medical, burn, obstetric, children, or newborn units; others are mixed. Based
on the mix, mortality varies in ICUs. Most patients are discharged to a regular or to
intermediate-care units before being discharged from the hospital; some may never make
it from either. The average mortality rate in ICUs is reported to be between 12 to 17
percent [13]. In 10,737 patients with different conditions admitted in ICUs in Germany,
94.5 percent were discharged from the ICU and 91.9 percent were discharged from the
hospital. For those requiring more than a thirty-day stay, 75 percent could be discharged
from the ICU and, overall, there was a 71.3 percent survival rate from the hospital [14].
In a somewhat similar ICU admission case, in Rochester, Minnesota, in the United States,
hospital mortality rates were 8.2 percent; 76.7 percent were discharged home, and 15.1
percent were discharged to other facilities. The authors also report no significant
differences in the discharge location of patients between July and any one of the other
months [15].

The purpose here is not to compare the mortality of ICUs in various countries, for the
criteria of admission may vary in different places. Rather, it is to give a rough idea that
one can communicate to the family. In more serious cases, one may also need to
communicate the predicted outcome. When there is a short stay in the ICU, as for post-
operative cases or when the patient’s condition continually improves, seldom does any
doctor–family conflict develop. However, if the patient is deteriorating even with
appropriate treatment, misunderstanding can take place.

Predicting the Outcome

Today, a physician with appropriate experience can with a reasonable degree of certainty
predict the outcome in a life-threatening condition admitted to the ICU. In addition to
experience, based on thousands of patients’ medical records nationally and
internationally, predictive scoring systems have developed that enhance the accuracy of
prediction, such as: the Acute Physiologic and Chronic Health Evaluation (APACHE) II
[16], the Simplified Acute Physiologic Score (SAPS) [17], the Mortality Prediction Model II
(MPM II) [18], and the Sequential Organ Failure Assessment (SOFA) [19]. The scoring
formats use a number of variables from the patient’s clinical and/or laboratory data, so
that one can come up with a numerical value and probability score to predict the
outcome, often within twenty-four hours of the patient’s admission. As treatment
modalities change, new revisions are made and the models are compared [20].

In certain conditions such as head injury or cardiac arrest, a few symptoms such as the
status of the pupils, together with the depth of coma and the response to treatment, can
offer a reliable predictive value. For example, patients with bilateral fixed-dilated pupils,
caused by cerebral compression or general cerebral ischemia, have a very poor outcome
and seldom survive. If they do, the survival is associated with severe disabilities. In a
consecutive series of patients, H. Clusmann [21] and coworkers found no survival “better
than a vegetative state” if bilateral fixed and dilated pupils did not become reactive
shortly after therapy; the chance of survival in unilateral fixed and dilated pupil was 46
percent. The authors indicate that the results were the same for those with trauma,
stroke, and those with similar conditions after elective intracranial surgery. Edgren and
coworkers [22] studied the results of resuscitation in patients with cardiac arrest and
found, of the eighty-nine patients who lacked pupil response to light, 80 percent had a
poor outcome. And, on day three, of 109 patients who were unresponsive to verbal
stimuli, eighty-one (74 percent) remained vegetative until death.
In the cases of severe head injury and cardiac arrest, one often can have enough
information within a day or two to predict the outcome with a reasonable degree of
certainty, to indicate that to the family. However, in the case of life and death,
reasonable certainty may not be enough; a period of treatments is needed until there is a
high degree of medical certainty. Because during this period the family is under stress,
appropriate updates are needed. They may feel an impending loss, a feeling of early
grief, warranted or unwarranted guilt, and/or anger. The physician therefore has the task
of treating or managing not only the patient but also the family.

Inadequate or discrepancies in communication by the staff, or lack of understanding of

the severity of the condition or a language barrier by the family, can translate into lack of
care and mistrust. The problem becomes compounded when a sudden and serious life-
threatening condition occurs when the family is not prepared, has supernatural faith, or
believes that against all odds the patient will recover. As a result, the family members
may become upset, remain in denial, or become unreasonable.

In an ICU-related interview of the family members of elderly patients who died from
chronic illnesses, Hanson and coworkers [23] found 23 percent of the family members
could not recall a discussion of the treatment. In another study, Azoulay and coworkers
[24] found that in 54 percent of cases, the representative of the patient in the ICU (of
whom 33 percent were of foreign descent) failed to comprehend the diagnosis, prognosis,
or treatment. Thus, communication about daily progress of the patient, plan for
treatment, and an outline of potential outcome is of great importance.

Conflict among the Staff

The occurrence of a serious illness, fear of the unknown, and fear of death are all sad and
stressful events for families. Few, however, realize that the doctor and other caregivers
may have similar feelings. Despite giving appropriate treatment and biological
inevitability, caregivers often feel a sense of failure if the patient does not recover.
Furthermore, caregivers, too, come from different backgrounds and may differ in their
philosophical or ethical outlooks. In an interview of 460 physicians and nurses taking care
of 102 patients, for whom withdrawal or withholding of treatment was considered, Breen
et al [25] found disagreements during life-sustaining treatment decision-making. Conflict
occurred between the staff and family members in 48 percent of the cases, among staff
members in 48 percent and among family members in 24 percent. In 63 percent of the
cases, conflict arose over the decision about life-sustaining treatment itself. In 45 percent
of the cases, conflict occurred over other tasks such as communication and pain control.
Social issues caused conflict in 19 percent of the cases.

Communicating with the family of a seriously ill patient or one with a deteriorating
condition may not only be difficult, it is not for everyone. To be clinically knowledgeable
about the patient’s condition, to have compassion and empathy, and to tell the truth are
essential, yet not enough. In addition, the task requires sensitivity and attention to the
family’s emotional needs. The process of grief in death and dying in patients described by
Dr. Elizabeth Kübler-Ross [26] can apply to the families. Their denial or anger can
manifest itself as difficulty to accept or lack of cooperation; depression may manifest
itself as irritability, and guilt may turn into unreasonable requests for treatments and
extension of life when the condition is no longer reversible.

While interaction with the family of a dying patient can be stressful, it is required. It is a
compassionate act and is a part of the duty for the doctor-in-charge. Some physicians
don’t mind inserting a tracheal tube in a terminal patient, but they express discomfort
and avoid removing it even after the patient is declared brain-dead. The feeling of
discomfort is understandable and is universal, but the reason for avoidance is obscure. If
a doctor finds it difficult to face the task, it would be wise and fair to avoid being in
charge of such patients to begin with.

At times when the family has realized that the treatments are futile, they may become
sensitive to measures that cause pain, such as insertion of an intra-tracheal tube, and
they want to know the reason for it. They may say, “I never want to be kept alive with a
breathing tube.” But if the dying patient is partially conscious and has difficulty in
breathing, a temporary tube to keep the airway open, together with sedation, would
make breathing more comfortable without causing pain. They need to hear that the
measure is quite appropriate and humane.

Finding the Right Person to Communicate With

Once the decisional capacity of the patient has failed, the family or a proxy replaces the
patient in making decisions. Each patient’s condition and each family’s circumstances are
different; one cannot follow the same format or routine for everyone. If there is an
advance directive, or an amicable previous doctor–patient relationship, the task of
collaboration and decision-making is easier. Otherwise, one needs to know more about
the family structure and their role, their understanding of the illness, and their
expectations before embarking on giving them a detailed status of the patient.

Once, after I had just finished an emergency operation in the middle of the night on a
patient with a bullet injury to the brain, the hospital chaplain called me while I was in
the operating room to say that the “family” wanted to talk to me. I always talked
personally to the family after the operation and I was particularly happy to do so since
there was no previous family acquaintance. As I stepped out of the elevator, in a large
entrance hall of the hospital, without exaggeration, I faced over several hundred
people. This was around 1970, when there was very little security and anyone could
get in and out of the hospital anytime during the day or night. The face of the well-
meaning chaplain could hardly be seen, way back against the wall.

As I was walking toward the center, a person with dark glasses held the collar of my
 white coat and harshly asked, “Is he gonna live?” I must say that it reminded me of the
comedian Jack Benny, who once in a show was pretending to be held up and was
similarly threatened by someone who said, “Your money or your life.” After his
characteristic pause, Benny responded, “I am thinking it over.” But this was not a
show; it was a serious threat and a tragic condition with a bizarre so-called “family”
circumstance. It was hard to think of the right response. I said the truth I knew, “I do
not know yet, but I have to get back to attend to another patient with a bullet injury to
the spine.” Fortunately, one presumably with a higher rank in the gang shouted at him,
“Cool it, man, cool it,” whereupon he immediately let my collar go. As I went back to
the elevator, two others followed me in; luckily, I still had the state of mind to get out
and take another route. Who knows? Perhaps I would have had to face a different
destiny.

That certainly is an unusual anecdote and seldom happens. But circumstances with a
smaller crowd and with a less strenuous condition are not rare. At times, a large number
of individuals follow a patient into the hospital following an accident or other emergency
conditions. It is not clear who is the family, who is the friend, and who is just a spectator.
Everything the doctor tells must be true, but timing is very important. In emergency
conditions, gathering information, evaluation, and certain treatment usually take place
concurrently. For certain tests or diagnoses, one may have to wait one or two days before
receiving the results. Yet the family usually is anxious to hear some information. It is
essential to see them soon after the examination, despite limited knowledge about the
outcome, to give information about the present condition and plans for evaluation and
further treatment.

In the meeting, one needs to identify the close family. Then gently excuse the rest unless
the family would like someone to stay. If there is a life-threatening condition, one may
begin by saying, “As you know, the condition appears serious” then explaining the plan
for treatment. For example:

Our goal is to do everything appropriate to see if the patient can recover.

Enumerate the treatment measures so far undertaken, e.g., intravenous fluids,
insertion of catheters, intubation, and respiratory support.
Explain the tests that have been requested and the expected time that the results
will be available.
Indicate the potential need for other tests and treatments, e.g., scans, blood
transfusion, or operation.

If the patient is unable to make a personal decision, one needs to identify the next of kin
or to see if there is an advance directive, health agent, or friend who is legally allowed to
cooperate to carry out the patient’s wishes.

Next of Kin and Surrogate

The term next of kin, applies to the nearest blood-related family member including the
spouse; the term surrogate, applies to a person having decision-making responsibility.
They are to carry out the patient’s wishes when the patient is mentally incapacitated or in
case of death. While legally some interpretation or explanation of the terms may become
necessary, the terms will convey the kind of responsibility expected. Furthermore,
because each state may have different laws, rules, and regulations, the physician may
also need to review or to consult a legal expert for the interpretation of such terms. As
examples, the following are a few excerpts and definitions from the Illinois Guardianship
& Advocacy Health Care Surrogate Act [27]:

Surrogate Order of Priority, the State Of Illinois

(1) The patient’s guardian of the person

(2) The patient’s spouse
(3) Any adult son or daughter of the patient
(4) Either parent of the patient
(5) Any adult brother or sister of the patient
(6) Any adult grandchild of the patient
(7) A close friend of the patient
(8) The patient’s guardian of the estate

The surrogate decision maker shall have the same right as the patient to receive medical
information and medical records and to consent to disclosure.

To have a proper and amicable doctor–family relationship, one needs to communicate

with the family as much as they need. From the beginning, it would be of help to explain
to the family the approximate duration of the stay in the ICU and have daily visit with
them at a certain time that they could count on. In a study to find the value of family
rounds to improve family–physician relationship in the intensive care unit (ICU), 86.5
percent of families had responded their experience as good or excellent and had “looked
forward to having a specific time of day to meet with the trauma team, and 90 percent
liked having rounds in the ICU room with the patient.”[28] It is also important to explain
that the patients’ conditions do not usually improve continuously but often fluctuate
during hours or days.

To secure agreement and consent, it is not practical to seek consent separately for each
item, e.g., for blood transfusions, scans, and antibiotics. It is preferable to seek their
consent in the form of a package appropriate for the disease. However, for a major
treatment, unexpected tests, and treatments like chemotherapy or operations, one needs
specific discussion and consent.

Preparing the Family for Patient’s Discharge or for Terminal Event

If the patient is gradually improving and recovers, everyone will be happy. But if, after
certain duration, the prediction strongly suggests that the patient is no longer benefitting
from the ICU treatments, or likely will die, the time has come to prepare the family. Some
patients may need to be transferred to a long-term care facility, nursing home, or
hospice. Timing is important; a premature attempt to prepare the family for bad news
can have an adverse effect. It may prove later to have been a wrong prediction.
Pressuring the family to make decisions too soon can backfire or make them refuse a
perfectly rational measure or recommendation when needed.

The prediction is more reliable when several organs begin to fail. With multiple organ
dysfunction syndrome (MODS), mortality increases 20 to 30 percent with failure of each
organ [29]. To feel comfortable making decisions about terminal issues, the doctor and
surrogate need to know the nature of their responsibility, certain definitions, and local
rules. For that the physician may need to consult a professional ethicist or legal expert.
As examples, the following are some excerpts and definitions from the Illinois
Guardianship & Advocacy Health Care Surrogate Act [27]; the review of the document in
its entirety is recommended. The readers may need those of their own state and future
updates.

“Imminent” (as in “death is imminent”) means a determination made by the attending

physician according to accepted medical standards that death will occur in a relatively
short period of time, even if life-sustaining treatment is initiated or continued.

“Death” means when, according to accepted medical standards, there is (i) an

irreversible cessation of circulatory and respiratory functions or (ii) an irreversible
cessation of all functions of the entire brain, including the brain stem.

“Life-sustaining treatment” means any medical treatment, procedure, or intervention

that, in the judgment of the attending physician, when applied to a patient with a
qualifying condition, would not be effective to remove the qualifying condition or would
serve only to prolong the dying process. Those procedures can include, but are not
limited to, assisted ventilation, renal dialysis, surgical procedures, blood transfusions,
and the administration of drugs, antibiotics, and artificial nutrition and hydration.

“Qualifying condition” means the existence of one or more of the following conditions in
a patient certified in writing in the patient’s medical record by the attending physician
and by at least one other qualified physician:

(1) “Terminal condition” means an illness or injury for which there is no reasonable
prospect of cure or recovery, death is imminent, and the application of life-sustaining
treatment would only prolong the dying process.
(2) “Permanent unconsciousness” means a condition that, to a high degree of medical
certainty, (i) will last permanently, without improvement, (ii) in which thought,
sensation, purposeful action, social interaction, and awareness of self and environment
are absent, and (iii) for which initiating or continuing life-sustaining treatment, in light
of the patient’s medical condition, provides only minimal medical benefit.
(3) “Incurable or irreversible condition” means an illness or injury (i) for which there is
no reasonable prospect of cure or recovery, (ii) that ultimately will cause the patient’s
death even if life-sustaining treatment is initiated or continued, (iii) that imposes
severe pain or otherwise imposes an inhumane burden on the patient, and (iv) for
which initiating or continuing life-sustaining treatment, in light of the patient’s medical
condition, provides only minimal medical benefit.

“The determination that a patient has a qualifying condition creates no presumption

regarding the application or non-application of life-sustaining treatment. It is only after
a determination by the attending physician that the patient has a qualifying condition
that the surrogate decision maker may consider whether or not to forgo life-sustaining
treatment. In making this decision, the surrogate shall weigh the burdens on the
patient of initiating or continuing life-sustaining treatment against the benefits of that
treatment.”

“Forgo life-sustaining treatment” means to withhold, withdraw, or terminate all or any

portion of life-sustaining treatment with knowledge that the patient’s death is likely to
result.

“Surrogate decision maker” means an adult individual or individuals who (i) have
decisional capacity, (ii) are available upon reasonable inquiry, (iii) are willing to make
medical treatment decisions on behalf of a patient who lacks decisional capacity, and
(iv) are identified by the attending physician in accordance with the provisions of this
Act as the person or persons who are to make those decisions in accordance with the
provisions of this Act.

“…A surrogate decision maker shall make decisions for the adult patient conforming as
closely as possible to what the patient would have done or intended under the
circumstances, taking into account evidence that includes, but is not limited to, the
patient’s personal, philosophical, religious and moral beliefs and ethical values relative
to the purpose of life, sickness, medical procedures, suffering, and death…”

“…A surrogate who acts or fails to act with due care and in accordance with the
provisions of this Act shall not be subject to criminal prosecution or any claim based
upon lack of surrogate authority or failure to act. The surrogate shall not be liable
merely because the surrogate may benefit from the act, has individual or conflicting
interests in relation to the care and affairs of the patient, or acts in a different manner
with respect to the patient and the surrogate’s own care or interests.”

“…Before implementation of a decision by a surrogate decision maker to forgo life-

sustaining treatment, at least one other qualified physician must concur in the
determination that an adult patient lacks decisional capacity. The concurring
determination shall be made in writing in the patient’s medical record after personal
 examination of the patient…”

“In the event of a patient’s death as determined by a physician, all life-sustaining

treatment and other medical care is to be terminated, unless the patient is an organ
donor, in which case appropriate organ donation treatment may be continued
temporarily.”

The decision for cessation or continued treatment is a part of management and standard
medical practice. Each state or country has local rules and regulations, and each person
may have specific ethical views – those are beyond the scope and purpose of this book. It
is important that the family understand that while a doctor has a fiduciary responsibility
to the patient, he is also responsible to follow the laws of the jurisdiction. When the
family is convinced that every medically appropriate measure has been done and the
patient’s pain was relieved, rarely does any conflict or disagreement develop. Though it is
always difficult to accept brain death, the family often realizes that the issue is no longer
about saving life; it is about dignity and rational management of one for whom there is
no reasonable prospect of cure or one whose heart is still beating but has irreversible
cessation of all functions of the brain.

In the end, most families usually come to terms with the inevitable biological and medical
limitation, and they frequently express their thanks and appreciation for the medical
team’s efforts. Yet occasionally, despite all efforts, there comes an obstacle that causes
an impasse in the progress of treatment or management of a patient whose condition is
incurable or irreversible.. In that case, the involvement of other physicians, a new ICU
team, family members, related religious counselor, ethicists, lawyer, or even intervention
by the court may become necessary. The solution could still become easier if the obstacle
is predicted or identified. The following potential obstacles are worth keeping in mind:

If the doctor–patient relationship has failed or the doctor is uncomfortable or

unable to deal with terminal issues, it is best to arrange for transfer of care to
another doctor; simple replacements may solve the problem.
It is possible that the family or the surrogate lacks knowledge of its responsibility,
lacks the trust needed in the doctor or in the system, remains in denial, still has
hope for recovery, or is afraid to make decisions.
There may be a religious issue not previously realized or discussed that underlies
the difficulty in deciding what is right or wrong.
On rare occasions, the family may not be sincere; and financial interests or
presence of crime is influencing their decision.
Ethics or legal consultation may be needed to decide if the surrogate is capable of
making decisions or is conforming as closely as possible to what the patient’s
intention would have been.
At times, consciously or unconsciously, the doctor may play games. Instead of
declaring his concern, he postpones decisions, does not make recommendations,
continues unnecessary treatments, waits until the disease declares itself, or may
 wait until another rotating doctor takes over. Such behaviors are neither
professional nor fair, nor are they appropriate ways to communicate. They
jeopardize the dignity and the honesty that are the essential requirements for the
practice of medicine.

Communication with Nurses

Despite a traditional division of responsibilities between physicians and nurses in patients’
care, in communication there is no difference in professionalism and the ethical duties.
Nurses spend much longer hours with patients, develop a closer relationship, and in some
ways are more intimate with patients than physicians are. Patients frequently feel more
comfortable to ask nurses about the status of their illness and plans for their treatments.
Nurses usually feel uncomfortable about giving or stopping treatments without knowing
the reason. For them to be out of the communication loop diminishes their ability to have
an open or truthful relationship with patients. Shortcomings can take place when a
system imposes inadequate time for making joint visits and rounds, imposes territorial
policies, and at times simply fails to make an effort to combine educational activities and
professional development.

Combined daily participation of doctors and nurses in rounds and in educational activities
would not only improve communication and patient care, it would also improve continued
education and research by nurses. Florence Nightingale [30] played an enormous role in
teaching and care of patients; she helped to decrease the general mortality thorough her
scientific approach and research. She emphasized continued education:

The progress you make in your year’s training with us is as nothing to what you must
make every year after your year’s training is over. A woman who thinks in herself:
“Now I am a ‘full’ Nurse, a ‘skilled’ Nurse, I have learnt all that there is to be learnt”:
take my word for it, she does not know what a Nurse is, and she never will know; she
is gone back already.

Doctors, institutions, or medical groups have various ways of involving nurses in the
communication loop. Some have direct personal communication, some simply write
“orders,” others communicate through their own nurse practitioner, nurse associate, or
clinical nurse specialist. Digital technology can greatly facilitate communication among
doctors, nurses, and varied caregivers. However, in my experience, nothing can replace
the value and the impact of direct communication and joint visit of patients; other ways
may have to be done in addition.

We used to make rounds with residents, nurses, physiotherapists, the social worker, and
the chaplain. This method at times was overwhelming for a patient and usually needed a
separate individual visit by members of the team to discuss issues with patients that
could not be done in front of the group. Yet the communication was the best. Everyone
knew what went on and each could benefit from others’ information, knowledge, and
observations.

Communication with Colleagues to Seek Medical Consultation or to

Make Referral
Consultation and referral are integral parts of patient care. The main purpose for
consultation is to obtain information, recommendations, or suggestions. Or it is for
referring a patient to seek diagnosis or treatment not known or available to the referring
physician. To facilitate patient care and avoid delay, to be considerate of the time the
consultant may have to spend, and to reduce waste in resources, professionalism dictates
that we accomplish the following:

To request consultation or to make referral to a physician with expertise related to

the patient’s illness
To call or preferably write the reason for such a request
To submit or to send with the patient all available and pertinent records

The failure to communicate one or more of the above issues can cause varied problems
and frustration. The following story illustrates what I mean.

A young quadriplegic patient, unable to talk, who could only respond by blinking one
eye (locked-in syndrome), was brought by ambulance from a nursing care facility to the
office of a neurosurgeon in a hospital. The accompanying grandmother mentioned that
the doctor at the nursing home wanted the tracheotomy tube removed, so that parents
could take the patient home. No medical records of the patient, no letter of referral, no
name of referring doctor accompanied the patient. All that the grandmother knew was
that the patient had suffered bleeding in the brain, had had an operation in another
state, and was sent to the nursing home for follow-up care.

The cause of the bleeding, the nature of the operation, the frequency and duration of
need for oxygen all were not available. The parents were at work and could not
accompany the patient, and the grandmother was anxious to see the tube removed
soon because the ambulance was to return shortly to take the patient back to the
nursing home. After considerable time and effort, the name of the referring doctor and
the person making the appointment became available, but they couldn’t be reached. To
the chagrin of the patient and the grandmother, and after considerable disturbance and
delays in attending to the needs of other waiting patients, the patient had to return to
the nursing-care center until appropriate physician and facility could be arranged to
evaluate if removal of the tracheotomy tube was safe.

Failure in communication to such a degree is rare, yet various degrees of that are
common. Conversely, a referring physician may send all medical records, tests, and scans
available to accompany a patient, most of which are not needed, without indicating the
purpose of request for consultation.
The purpose of consultation or referral of a patient is to seek diagnosis or treatment not
available to the doctor or to the institution. The request is to be for the good of the
patient; that is a duty and is a common daily occurrence. The request is to be sincere, not
simply to avoid care for an indigent patient, or a patient appearing to be “difficult” or
litigious. Even under such circumstances the request may be reasonable, so long as the
intention is communicated.
Not long after beginning to practice medicine, a doctor is likely to receive a call, a letter,
or a subpoena from an attorney. To say the least, it can be quite disturbing. However,
unless the subpoena is a claim of negligence made against you, the doctor, it should not
be that disturbing. The subpoena is usually issued by the clerk of the court in the name of
the judge or by a lawyer as an officer of the court. In it, one may find words like
command, date for response, appearance, and threat for not responding or not
appearing. It may often end up to be a request to send documents or a need for
discussion by a lawyer representing a client against another individual or establishment.
It may contain a request to contact the lawyer to arrange for a deposition, often with
reasonable convenience to the doctor. Nevertheless, one must respond to the subpoena
personally, through a representative, or through a lawyer.

Before communicating with lawyers about patients, a physician needs to have some
general idea about the law and to be familiar with some terms [1] lawyers use. In the
United States, the United Kingdom, Canada, and several other countries, trials are based
on the adversarial system in which opposing parties are to present arguments based on
facts, the factual value of which is decided by the judge and/or by the jury. If a physician
receives a subpoena alleging negligence in the performance of his or her professional
duties, it is important that the physician immediately get in touch with his or her lawyer
for instruction. For other issues, there may be regional, institutional, or individual policies
to follow. If in doubt, it is best to get in touch with the lawyer assigned or hired to give
advice or to represent the physician. Like physicians, lawyers prefer to be informed
sooner rather than later to be able to prevent unforeseen problems.

In addition to personal lawyers, there are numerous writings and books [2] by experts
advising physicians about dealings with lawyers and the court. That advice is beyond the
expertise of this author. Yet over forty years of practice in neurosurgery necessitated
periodic contact with lawyers, through which I observed and learned certain issues.
Those, together with my studies, are the basis for the following that one likely needs to
know before communicating with lawyers about patients. The professional
communication with lawyers takes place essentially under three circumstances: doctor as
a fact witness, as an expert witness, or as a defendant.

Fact Witness
As fact witness, the doctor may be asked or be subpoenaed by a lawyer representing a
patient (plaintiff) or a defendant to testify before the jury and/or the judge to explain
facts and information about a patient the doctor has treated. The patient may have
alleged to have been injured or harmed by another doctor or an establishment
[defendant(s)]. Here, the doctor is a witness like any other whose presence is required.
When subpoenaed, the doctor must respond. It is the patient’s and the defendant’s right
to have anyone, including the doctor, to help the judge and/or the jury learn about the
facts of the case. While in certain circumstances the opinion of the doctor about the
conditions such as causation or future outcome may be sought, the doctor’s role here is to
testify about the facts of the illness he has observed, diagnosed, or treated. There are
other circumstances where the patient’s or the defendant’s lawyer may need the doctor’s
opinion, as for presentation in front of an arbitrator, Social Security claims, disabilities, or
job-related matters.

Expert Witness
Here, the plaintiff’s or the defendant’s lawyer consults a doctor to get his or her opinion,
to educate, or to testify regarding issues like an alleged injury that is in dispute but not
confirmed. The doctor may or may not have examined the patient. He or she is expected
to have expertise about the condition involved, to have reviewed the records, and to give
an opinion in relation to issues such as the nature, extent, causal relationship, or
outcome of the injury; the participation is voluntary. The plaintiff’s lawyer has the duty to
present opinions believed to confirm that the injury took place, the defendant’s lawyer
has the duty to protect his client from false accusation, and the judge and/or jury have
the duty to evaluate the facts of the opinions and evidence presented to make a
judgment.

Doctor as Defendant
Here, the doctor is alleged to have been negligent and to have caused certain injury or
harm through the management of a patient. A malpractice claim alleges negligence in the
performance of professional duties. In 2004, medical malpractice was 3 percent and
product liability was 4 percent of incoming tort caseloads in six general jurisdiction courts.
Furthermore, the medical malpractice case load varies in different states. For example: in
2004, the case load generated was twenty-three cases per 100,000 residents in New
York, while it was only two cases per 100,000 in Oregon [3].
Discovery Deposition
Prior to testifying in the court, a physician is likely asked or subpoenaed by a lawyer on
either side for a deposition, usually out of court, to discover facts about the case. The
testimony is under oath, and the doctor is sworn to “tell the truth, the whole truth, and
nothing but the truth.” The attorneys on each or various sides representing their client
are present, and the stenographer records the questions, the testimony, and the
discussions. The doctor as defendant does not necessarily have to testify on his or her
own behalf. Such a decision is usually made through evaluation, judgment, or
recommendation by the doctor’s attorney.

Torts
Most professional encounters between doctors and lawyers are related to claims of an
injury or harm said to have arisen from some form of civil wrongdoing, tortious act, by a
person or a group. To receive compensation, the injured person, the plaintiff, may sue
the accused party (tortfeasor), alleging that the harm occurred through “negligence”
stemming from a certain breach of “duty.” Usually the accused (defendant) disputes the
alleged civil wrong (tort) and seeks to prove his innocence. Torts are private civil wrongs;
the injured or harmed plaintiff seeks financial compensation for loss and/or suffering.

Crimes
Crime is an offense against public law. The government seeks justice and punishment. In
tort, the plaintiff could be anyone; in medicine, it is usually a patient. The defendant
could be any one or a group, i.e., an employer, a doctor, or an establishment. A doctor
may be consulted to testify in court to inform or to educate the jury in relation to certain
issues in a crime about which the doctor has medical expertise.

Reasonable Medical Certainty

The trial for a medical malpractice suit is based on tort laws. The plaintiff (the patient)
alleges that through the process of medical care, he or she has suffered a certain specific
injury or harm. The harm is alleged to have stemmed from the defendant’s (doctor,
hospital, others) negligence, not necessarily intentional. The plaintiff through his or her
lawyer has to prove through evidence in court that not only harm or injury did occur, but
also that certain specific negligence took place, for medical complications or even death
can occur in the presence of what is considered to be standard of care without
negligence. The standard of proof used here is called reasonable medical certainty.

Lawyers often ask a physician something like, “Doctor, within a reasonable degree of
certainty as such is defined in your field, do you have an opinion about…?” If the answer
is yes and the doctor expresses an opinion or discusses the issue, it is assumed that the
 doctor understands what reasonable certainty means. The word reasonable may sound
easy but can be difficult to understand or to explain fully, especially if one thinks
scientifically. While the wording may vary somewhat in questions, one needs to keep in
mind the definition expressed in Federal Rule of Evidence 702, Testimony by Experts, as
follows [4]:

Rule 702. Testimony by Experts

If scientific, technical, or other specialized knowledge will assist the trier of fact to
understand the evidence or to determine a fact in issue, a witness qualified as an
expert by knowledge, skill, experience, training, or education, may testify thereto in the
form of an opinion or otherwise, if
(1) the testimony is based upon sufficient facts or data,
(2) the testimony is the product of reliable principles and methods, and
(3) the witness has applied the principles and methods reliably to the facts of the case.

In practice, the level of reasonable degree of certainty is not always easy to determine,
for the term certainty conveys rather a concrete message that the assertion is based on a
high degree of confidence. However, the term reasonable may diminish that certainty to
a vague level. Some say anything from 51 percent upward. Others suggest “more likely
than not,” “likelihood,” or what a “reasonable doctor”—in that specific profession—would
do. Nelson Abbott, an attorney, writes, “Not only doctors struggle in applying the
standard. Attorneys frequently struggle as well” [5].

To convey statements with reasonable certainty can become more difficult when we
assign a numeric value to them arrived at through perception, opinion, or non-numerical
evidence. For example, it is difficult to know the difference in the truth value when one’s
belief is based on 49 percent as opposed to when it is 51 percent As one thinks about,
reads about, or deals with it, however, the concept becomes clearer. As is in life, most
prudent decisions or actions are those based on perceptions or beliefs that are
reasonable and likely correct. A prudent person is one who is reasonable, whose decisions
or actions are based on belief stemming from experience or through facts.

Beyond Reasonable Doubt

The reasonable doubt standard is an important element of criminal trial in the United
States system of justice. The Constitution considers a person accused of a criminal act to
be innocent until proven guilty. The government’s prosecutor has to present evidence in
court to prove beyond a reasonable doubt, and the juror accepts the evidence as such to
conclude that the accused is guilty of the alleged crime.

There is a good deal of discussion in the literature as to what level of certainty one needs
to have to qualify the guilt to be beyond a reasonable doubt: some say very sure; others
say a reasonable person has no reason to have doubt. But even two “reasonable”
individuals may differ in their level of certainty about an issue presented as evidence.
Often, evidence is not in numbers or in a concrete shape so that everyone sees it as the
same. Similarly, medical issues one presents as evidence carry varied levels of certainty.
Be that as it may, resolution of such issues belongs to the law and the court. It is the job
of a prosecutor to prove and the jury to conclude if evidence is a fact. The physicians’
responsibility is to tell the truth, the whole truth, and nothing but the truth.

Truth, the Whole Truth, and Nothing but the Truth

Prior to a deposition or to testifying in court, a witness is sworn to tell the truth, the
whole truth, and nothing but the truth. Much has been written about this statement. The
statement sounds clear until one begins to think about it.

Years ago while testifying in court, I suddenly realized that I had possibly not
understood clearly a question asked earlier during cross-examination and my response
could have been unrelated. I then brought that to the attention of the judge;
paraphrasing myself, I said, “Your Honor, I believe that I had possibly misunderstood a
question earlier and my response could have been incorrect.” Thereupon, the judge
called the lawyers on each side for a private discussion. I was then told that they were
not interested to hear me say what it was. That surprised and puzzled me as to why
they would not like to hear me correct my statement if they were interested in the
truth. When later on I mentioned that to an attorney, he said, “That is simple; they did
not know what you were going to say and likely neither side wanted to risk it.”

It may be hard to see that logic for those trained to seek the truth in empirical, ethical, or
in philosophical pursuits as compared with those trained to seek the truth in an
adversarial system of justice. For some, an article by Peter Henning [6], “Lawyers, Truth,
and Honesty,” may be convincing or can shed some light on the matter. For others, it
may even make it more puzzling. In his article, he talks about the story of how:

…a defense lawyer learned from his client that the client had attacked and robbed a
victim, rendering him unconscious. The victim reported the crime to the police, and the
client was arrested and charged. At a preliminary hearing, the victim, relying on a
police report, gave the time of the crime as occurring about an hour later than it
actually took place. Well, it turns out that the client had a terrific alibi for the time
given by the victim at the hearing because he was with friends at that later time, and
the defense lawyer asked the State Bar whether he could call alibi witnesses to testify
at the client’s trial. The Michigan State Bar said that, not only could the lawyer call the
witnesses, he had an ethical obligation to do so, based on the determination that one
“cannot suborn the truth” by calling witnesses who will testify truthfully. Yet, the
witnesses would help support an alibi defense for a guilty defendant, and the lawyer
would use that evidence to have the jury draw a false inference about the client’s role
in the commission of the crime.
Professor Henning then raises the question, “Can we really say that this is the ‘truth’
when it is not?” After a period of studying the issue, he argues the matter in a “nutshell”
that:

Lawyers have an obligation to be honest, but do not have one to ensure that the truth
be revealed or vindicated. Therefore, the criticism of attorneys that they thwart the
truth is wrong because it misapprehends the lawyers’ responsibilities.

Most lawyers and courts, not necessarily all, seem to support such an argument, believing
that the “truth” in law does not have the same meaning that it has in science. Lawyers
have a fiduciary responsibility to represent and to protect their client. William M. Shields,
JD [7], writes:

Fact finding by the courts is not an attempt to determine “the truth” in some absolute
sense, but to make a finding based on the weight of evidence actually admitted.

The above-mentioned views may be difficult to understand by a physician trained to think

empirically and with a belief in “first do no harm.” Then to hear lawyers have an
obligation to be honest, but do not have one to ensure that the truth be revealed or
vindicated sounds puzzling. For honesty to have value, it should reveal the truth.
Otherwise, honesty loses its value, and if it becomes selective, it may lead to dishonesty
and harm.

The unwarranted judgment against an injured patient or an innocent physician may

appear to be only a monetary loss. Yet the associated emotional torment for each is
unimaginable; it is unfair and morally wrong. However, to explain the morality and ethics
in law, Stephen Dunham [8] writes:

Legal ethics are principles of law, not a set of morality rules. Legal ethics are not
synonymous with human ethics or morals or common decency or other human values.
They are certainly not always obvious or intuitive to a “good” person.

Nevertheless, one cannot deny that unfairness, when it occurs, weakens the confidence in
the justice system and lessens the trust people need to have to work together. A Harris
poll conducted for common good [9] indicates:

…the overwhelming majority of physicians (83%) and hospital administrators (72%) do

not feel that physicians can trust the current system of justice to achieve a reasonable
result if sued.

…half (51%) of all physicians think that their ability to provide quality medical care to
patients has gotten worse in the past five years. Further, more than three-fourths of
physicians feel that concern about malpractice litigation (76%) has hurt their ability to
provide quality care in recent years.
 Just under two-thirds (61%) of physicians have noticed physicians being reluctant to
make what they believe to be humane choices because of concerns that a family
member might bring suit.

Right or wrong, real or perceived, unfair acts lead to unfair responses. In medicine, it has
increased the cost of public health in billions of dollars by physicians practicing defensive
medicine. That, in turn, would lead to laws and regulations likely to result in an
insufficient system of delivery and receiving care.

To be fair, however, discovering the truth in nature is quite different from that of law.
Even when the evidence appears obvious to our senses, arrival at the truth in law can be
far more difficult than it is in science. For in science, nature does not have beliefs, bias, or
prejudice; does not lie, deceive, or cover up; nor does it make judgments based on
sympathy, loyalty, or advocacy; but the human does. We may not be aware of such
behavior within us. Furthermore, in science, one often can test the phenomenon
repeatedly until it is confirmed or nullified; that is not the case in law. Therefore, until
science enables us to discover the truth for law, as close as it does for nature, we need to
communicate with those imprecise terms like reasonable, more likely than not,
preponderance, and beyond a reasonable doubt.

Lawyers’ Responsibility
The American Bar Association(ABA) [10] defines the responsibility of the lawyer to client
as:

A lawyer, as a member of the legal profession, is a representative of clients, an officer

of the legal system and a public citizen having special responsibility for the quality of
justice.

…As advocate, a lawyer zealously asserts the client’s position under the rules of the
adversary system.

To understand the degree of such zealousness the case of O.J. Simpson may be
pertinent...

On June 12, 1994 Nicole Brown Simpson, former wife of O.J. Simpson, and her friend
Ronald Goldman were murdered. O.J. Simpson was charged with their deaths. Simpson
was a famous retired football player; the trial was televised and it was one of the most
watched events, some called it the trial of the century. One important issue for the
prosecutor was to prove the bloody gloves found in the garden outside Simpson’s house
were his, not planted by others. In front of the television Simpson seemed to struggle
to demonstrate how difficult it was to put the wrinkled-appearing leather gloves on. He
was attempting to wear them on the top of plastic gloves that appeared to have
partially produced webs between the fingers. During the closing argument to the jury,
 his lawyer Johnnie Cochran repeatedly used the now famous statement “If it doesn’t fit,
you must acquit.” After several months, on Oct 3, 1995, the jury found Mr. O.J. Simpson
not guilty of two counts of murder. The verdict brought a good deal of undercurrent
racial perception; some were jubilant, others were much disappointed in the system.
Parts of the trial can be seen on YouTube.

Analyzing the trial from jury selection to the verdict, Professor Gerald Uelmen, one of Mr.
Simpson’s attorneys in his book Lessons from the Trial writes, “…the trial is a human
endeavor. It is a ‘search for the truth’ only in the sense that other human endeavors are a
search for the truth.”[11]

In defense of the system and the vigorous attempt by Mr. Cochran for his client and
indicating that what most lawyers support, Uelmen quotes Henry Lord Brougham,
defending the queen of England against King George IV.

An advocate, in the discharge of his duty, knows but one person in all the world, and
that person is his client. To save that client by all means and expedients, and at all
hazards and costs to other persons, and among them, to himself, is his first and only
duty. In performing this duty he must not regard the alarm, the torments, the
destruction which he may bring upon others…

The above case is not brought up here to express any personal view or opinion regarding
the O.J. Simpson verdict. The intention is to indicate that, regardless of individual views,
the outcome of a trial usually is unpredictable, even in criminal cases in which the verdict
is based on beyond a reasonable doubt. At times one hears on the news of a person
apparently innocent of a crime who has wrongly been jailed for years. Yet, in torts, as in
medical negligence suits, where the level of proof is much less and is based on
reasonable degree of certainty or more likely than not, the chance for a wrong verdict can
be higher. No matter how frivolous the litigation may appear, it is far better and often
easier to avoid it than to defend it. Appropriate and thoughtful communication with the
family is commonly considered by many lawyers and others to help reduce the chance of
medical law suits [12].

Winning, Losing, and Words

A trial is a match between the plaintiff and defendant, played or fought by their attorneys
through words and what is presented as evidence. It is refereed by the judge to assure
conformance with the laws. The doctor is likely to find himself caught in the middle of this
dispute. It is said that a lawyer, in addition to being fiducially responsible to his or her
client, may have other motivation including pride for ability to convince, reputation in
winning, financial reward, or promotion in the firm or institution. He or she also has the
responsibility of being truthful to the court and advancing the cause of justice. However,
the lawyer on each side is often more interested in hearing the version of the “truth” that
promotes or does not jeopardize his or her side; the lawyer may even suppress the truth,
as if it is the job of the lawyer on the other side to bring that up. In the end, as in any
disputes and as with other professional members of societies, lawyers can vary in their
level of commitment to the truth and fairness.

A juror is to deduce the “truth” through the uttered words and evidence for determining
guilt or innocence. Words then become the most important elements of the trial. Once a
lawyer told me, “You use tools to operate, I use words; you manipulate tools to produce
certain results, I manipulate words.” The metaphor does covey a message, but not the
term “manipulate.” For when a surgeon manipulates the tools, it is to produce results
through which the patient benefits; no one else suffers. However, in trials, manipulating
the words can change the meaning and outcome, and adversely affect others.

Words such as “pain,” “sensation,” “suffering,” and “certain physical malfunctions” are
examples of those a lawyer may manipulate to exaggerate or to suppress the degree of
disability or suffering. While the suffering is often real, with certain incentive in mind, the
plaintiff may exaggerate the degree of pain, request strong medication, or even undergo
a certain pain-relieving procedure to indicate the extent of the harm received. Believing
in the plaintiff, his or her lawyer may use those as evidence for a high level of suffering.
On the other hand, to refute or to create doubt in the mind of the jury, the opposing
lawyer may attempt to argue that pain is a subjective matter. For example, a lawyer may
say, “Doctor, you really don’t know how much pain the patient has. It is something that
the patient tells you, not something that you see.” The answer is, of course, yes. Yet,
based on experience and knowledge of the patient’s condition or illness, the doctor can
know the likelihood of the presence or absence of the pain and can estimate its degree.

The lawyer’s argument may be sincere, not manipulative, simply wanting to know, but
the intricacy of the process may not be apparent. It is important to realize that it is not
the function of the doctor to participate in the argument; the doctor’s task is to present
evidence and to express opinions that the doctor believes to be true. The doctor usually
is a significant witness in a deposition, testimony, or trial. Misuse of a word by the doctor
or the use of complicated Latin medical terms can be misunderstood and alter the
outcome of a case. Conversely, the doctor may misunderstand certain words or
statements and hastily agree with them. If in doubt, it is best to ask for an explanation,
the meaning of the term, or for the question to be repeated.

What Does the Lawyer Want to Know?

It is wrong to assume that the lawyer is not interested in knowing the truth. The
question, however, is: whose truth? Is it the “truth” that the client believes, the one that
the physician testifies for on behalf of the plaintiff, or the one the physician testifies for
on behalf of the defendant? Granted, everyone sincerely believes in what he or she
testifies is the “truth.” Then, if the statements are contradictory, which one is true?
Regardless of validity or reliability, lawyers on both sides like to hear or know whatever
the doctor believes to be true. They need to explore, question, or to challenge to find on
what basis a witness arrives at his or her belief. Each side needs to develop a strategy to
support or to defend his client, which “truth” to bring up in the court, which to suppress,
or which to challenge in the court. Ultimately, the “truth” is said to be that which the jury
decides it to be.

As in medicine, concepts in law are not stationary. Even a short review of law literature
indicates the vast amount of writings, discussions, and critical evaluations done by legal
scholars to make the legal system fair and ethical. Except for the specifics related to
professions, the code of ethics and professionalism of The American Bar Association
(ABA) [10] is similar to that of The American Medical Association (AMA) [13]. Both
periodically review and update concepts based on ethical views of the era. One can easily
find scholarly discussions of the shortcomings in the adversarial system of justice. Yet the
conclusion remains for the most part that the system is still the best so far devised.

If one watches the news or takes a trip abroad, especially where they do not have laws
like those of the torts, it would not take long to come across many unprotected areas
where a pedestrian can be injured, people disabled by accidents, medical negligence
takes place, or rights can easily be denied by the elite. Then one can soon appreciate the
importance of the existence of tort laws. Unless similar laws and compensatory measures
are present, democracy is meaningless; public safety is compromised, the disabled will
suffer more, and victims will be victimized more. Furthermore, one can soon appreciate
the importance of lawyers. In a sense, lawyers can be considered soldiers and protectors
of justice and democracy. Without them, laws would be lodged simply in books, used at
random, when a privileged minority feels the need.

Be that as it may, when one sees the exorbitant amount of medical malpractice costs, the
enormous cost of defensive medicine, and frivolous lawsuits, it is easy to feel frustrated.
A Harris poll in 2002 [9] indicates nearly unanimous agreement among physicians,
nurses, and hospital administrators that extra tests, referrals, and procedures contribute
in a significant way to healthcare cost issues. Due to fear of higher legal exposure, 29
percent of physicians state that they have been interested in a certain specialty but shied
away from it, and the clear majority of physicians, nurses, and hospital administrators all
feel that malpractice claims occur mainly from adverse results rather than actual error.
The concern in the medical profession seems not about the system; rather, it is about
abuse of it.

Does a Physician Have to Communicate with Lawyers as Expert

Witness?
In general, one may not have to. However, if subpoenaed, the doctor must respond and
communicate with the lawyer and/or court, as to what his or her position is in relation to
the subpoena. Some physicians do everything they can to avoid testifying, others
periodically accept the request to be a witness, and a few make that a major source of
their income. For whatever the reason is, the Report of the Board of Trustees of AMA, B
of T Report 5-A-98 [14], is a helpful and important guide to follow:

* As a citizen and as a professional with special training and experience, the physician has
an ethical obligation to assist with the administration of justice,
* The medical witness must not become an advocate or a partisan in the legal
proceeding,
* The medical witness should be adequately prepared and should testify honestly and
truthfully,
* The attorney for the party who calls the physician as a witness should be informed of all
favorable and unfavorable information developed by the physician’s evaluation of the
case, and
* It is unethical for a physician to accept compensation that is contingent upon the
outcome of the litigation.

Medicine and law are self-regulated professions, each bound by ethical and professional
standards with continuous attempt to bring about rules, regulations, and changes to
serve the public fairly and honestly. The best approach we, as physicians, can take if we
decide to testify is to remain physicians, leaving lawyering to lawyers, judgment to
judges, and verdicts to the judge and/or the jury. Dunham [15] put it:

Legal ethics are ambiguous. Law seldom provides definitive, scientific answers. Law is
what you get in a given situation after a process of analyzing, arguing, persuading,
assimilating, divining and other processes of decision-making.

One often hears that the doctor testifies “on behalf” of the plaintiff or the defendant. The
term “behalf” is to be considered carefully. While the testimony may end up to become
on behalf (or for the benefit) of one side or the other, the doctor’s testimony is on behalf
of the truth. It is the attorney, not the doctor, who is “on behalf.” Each doctor represents
not only his own professional integrity but also that of the profession of medicine. A
doctor is to testify to what he or she believes to be true. For lawyers, Alschuler writes
that truth-telling “is as much about the lawyer’s integrity as it is about the welfare of his
clients and his community.” [16]

It is essential to keep in mind that half-truths may be more hideous or injurious than lies;
they can make the lies more believable. In communication, the truth is not just what is
told but also what is conveyed. In the end it is all about justice, for it is mainly justice
that glues us together, socially and globally. If each of us contributes to it in any way we
can by communicating what we believe to be true, we may even some day bring
understanding and peace to the world.
At times a problem appears in the doctor–patient relationship that is disturbing and its
source seems unclear. As Robinson et al. suggest, such difficulties may stem from the
healthcare system, the doctor, the patient, or the doctor–patient relationship.[1]

HealthCare Difficulties
Communication between a doctor and a patient works best when both are free and
willing to have the relationship. Without such a choice, communication may become
difficult.
This can occur when:

The insurance coverage is limited to certain care providers or a hospital in which

the patient is not comfortable.
The doctor is obliged to see a patient who is difficult to deal with.
The doctor or the hospital is not equipped to manage the patient’s conditions yet
circumstances limit the patient’s choice.
For some reason, either the doctor or the patient is dissatisfied with continuing a
doctor–patient relationship, but geography or distance makes it difficult for the
patient to travel.

The reasons for such obstacles are not always apparent. Individual preference or
underlying bias can be the cause. Regardless of the reason, when we become ill, we
would like to trust our doctor and the hospital. If the patient and the doctor spend
enough time to understand each other, the relationship may improve. Frank and sincere
discussions about issues of concern may reduce or eliminate the obstacle. However, if the
lack of trust remains, it would be better to find an alternative solution. The people’s
desire to have choices for doctors and for hospitals is one form of autonomy.

“Difficult” Doctor
Various reasons mentioned above could apply to the doctor and make him or her difficult
to deal with, or circumstances may exist that make the doctor appear “difficult.”

For example:

The doctor consciously or unconsciously is biased against the patient, is uncomfortable

dealing with the patient, or perceives the patient to be litigious and prefers no
relationship.

The illness is obscure and the patient’s condition does not improve, or the illness is not
within the expertise of the doctor, yet the doctor continues to treat the patient.

The doctor lacks experience, has inadequate knowledge of the patient’s personality and
attitude, or lacks understanding of the patient’s rights and autonomy.

The foregoing may be accentuated by a haughty attitude or feeling of self-importance

on the part of the doctor, who has limited tolerance when a patient exhibits lack of
knowledge, is wrong, or expresses doubts about the doctor.

At times a doctor may have done everything correctly but has not communicated enough
to the satisfaction of the patient. That especially becomes a problem if the condition does
not improve or is deteriorating. Despite all the advancements in medicine, there is a limit
for improvement in certain illnesses; there are expected and unexpected complications,
and there are no cures for certain illnesses. Unless a patient and/or the family know
ahead of time about the possibilities for the potential outcome, the lack of improvement
may be interpreted as inadequate or a wrong treatment.

“Difficult” Patients
Not infrequently, the doctor may find a patient who is difficult to work with. The
relationship is stressful and even therapeutically unproductive. Geoffrey Robinson, et al
[1], suggest:

When dealing with a difficult patient, the first thing to do is to identify the source of the
problem. Is it primarily due to the patient, the doctor, the patient–doctor relationship,
or is it due to the health-care system?

Labeling the patient as difficult assumes: an ideal doctor and an ideal doctor–patient
relationship working within an ideal system. This is rarely the case.

They also indicate that a “difficult” patient is not a patient with a difficult disease but
one:

With multiple (unexplained) physical symptoms

With frequent attending
 With somatization disorder
Who breaks doctor–patient boundaries
Who won’t or can’t get better—sick role issues
Shows non-compliance (including treatment)
Who believes doctors are gods
With hostility and signing out
Is litigious
Is manipulative
Has (undiagnosed) personality disorder (borderline or dependent)
May have chronic medical disorders or social disabilities
Has chronic pain syndromes with or without drug addiction

James E. Groves [2] writes about a certain type of patient as a “hateful patient.” He
explains that they “are not those with whom the physician has an occasional personality
clash.” He defines them as “those whom most Physicians dread.” He classifies their
behavior as follows:

Dependent clingers—escalate from mild and appropriate requests for reassurance

to repeated, perfervid, incarcerating cries for explanation, affection, analgesics,
sedatives and all forms of attention imaginable.
Entitled demanders—resemble clingers in the profundity of their neediness, but
they differ in that—rather than flattery and unconscious seduction—they use
intimidation, devaluation and guilt-induction to place the doctor in the role of the
inexhaustible supply depot.
Manipulative help-rejecters—Like clingers and demanders, they appear to have a
quenchless need for emotional supplies… Appearing almost smugly satisfied, they
return again and again to the office or clinic to report that, once again, the
regimen did not work.
Self-destructive deniers—Self-destructive deniers display unconsciously self-
murderous behaviors, such as the continued drinking of a patient with esophageal
varices and hepatic failure.

Malingering
According to the Diagnostic and Statistical Manual of Mental Disorders [3] the essential
feature of malingering is intentional production of false or grossly exaggerated physical or
psychological symptoms, motivated by external incentives such as:

Medico-legal context of presentation (e.g., the person is referred by an attorney to

the clinician for examination)
Marked discrepancy between the person’s claimed stress or disability and the
objective findings
Lack of cooperation during the diagnostic evaluation and in complying with the
 prescribed treatment regimen
The presence of antisocial personality disorder

A certain degree of malingering is common during daily encounters at work, such as

complaining of headaches and not feeling good when one does not want to do certain
work, is not ready to do it, or has failed to do it. Or a person acts sick or takes a sick day
to do something one wants or needs to do. Such actions are mostly at the level of
excuse; perhaps it comes from childhood and occurs when there is a transaction between
two persons having a different level of power or status. In medicine, to be of help, it is
important to explore the underlying reason that the patient behaves in a malingering
manner.

Factitious Disorder
Factitious disorder is the absence of external incentives. The disorder may appear like
malingering, but it is different. In malingering the person fakes or exaggerates a
condition consciously for an external incentive such as gaining certain monetary benefit,
avoiding punishment, avoiding certain duty, or receiving narcotics. In factitious disorder
the incentive is internal; it often is an unconscious behavior. The person may wish to
maintain a so-called “sick role,” receive sympathy, or receive love. A severe form of
factitious disorder is seen in Münchausen syndrome. Such patients usually have numerous
hospital visits with varied complaints where their tests are negative for the presence or
the intensity of the disease

Feigning
Feigning may appear like malingering, but occur under specific circumstances. A soldier
held by the enemy may consciously fake amnesia, or under stress be unable to recall
certain information the enemy is looking for; or a person may claim lack of recall in
having done certain harm.

Such conditions may overlap and manifest themselves with different intensity. They are
of considerable interest among doctors and psychologists interested in forensic medicine
for the cause, interpretation, and nomenclature. The conditions, not infrequently, are
present in various degrees in daily medical practice. The awareness of their presence,
superimposed with or without other organic diseases, is of extreme importance to be able
to help, guide, or refer the patient to appropriate experts.

Injury Exaggeration
Compensation for those injured on the job or those injured by others is fair and humane.
They also may have rights for other benefits. Fear of injury, fear of the future, fear of
going to work, and mild exaggeration in some are natural and common. At times the
concern for future status at work, getting injured again, financial circumstances, and/or
age can cause a patient to grossly exaggerate the symptoms. The management then
becomes difficult, and there is the need for a combination of fair evaluation and
appropriate communication. Exaggeration is a condition to be diagnosed and confirmed
after certain duration, not one to be assumed.

The duration can be divided into three periods as follows.

Period I
The best way to treat patients with work injuries or with injuries caused by others is to
treat them exactly as one treats any patient with a similar physical and emotional
condition. Any other way would be inappropriate or unethical. Yet tests or treatments
such as physical therapy, pain management, or occupational treatments without medical
indication are inappropriate and an unfair use of health resources. The unwarranted
delaying to return to work or needless support by doctors or by lawyers can promote
more fear or can exaggerate the patient’s perception of the extent of the injury.

To ignore or to avoid the patient’s concerns, fears, and needed treatments is

inappropriate, unfair, or unethical. To doubt the veracity of the patient’s complaint by
doctors, employers, or insurance companies is unfair and likely can cause anger in the
patient. Making the patient return to work too early may deny the patient the time
needed to recover, cause additional injury, or create a need for taking time off again.
Such measures are likely to make the patient frustrated and lose the trust needed for the
doctor, employer, or insurance provider. “The greatest indignity of being disabled is not
being believed,” wrote a patient of mine with back pain, whose insurance company
required repeated forms to be filled out before approving every little care she needed.

Period II
Sometimes a patient injured at work or by others begins to show symptoms appearing to
be exaggeration, secondary gain, or malingering. It is important to indicate to the patient
that exaggeration often causes unnecessary injections, treatment, operations, or denial
of reemployment. I find that in this period frank comments or direct questions, such as
the following are helpful to some:

Tell me what you are concerned about or afraid of.

I know you are not a doctor, but tell me what you think is wrong; tell me what you
think your diagnosis is, what should be done, or what kind of treatment is needed.
I know you have pain, but do you think that it is severe enough to require
injection, physiotherapy, operations, or enough to stay off work?
Because your examinations and tests are essentially negative for your symptoms, I
get worried; I don’t know if your condition is caused by exaggeration or I am
missing something related or unrelated to the injury. In that case, we may end up
 having unnecessary tests, treatments, or operations, each having its own side
effect or complications. Can you help clarify the problem?

By asking the patient to participate in figuring out the dilemma, one may understand
better the source of concern, intention, or fear.

Period III
After judicious evaluation, treatment, or consultation, a patient may continue to show
definite evidence for exaggeration or malingering. One then needs to communicate the
impression first to the patient and to indicate that the same impression will be reported
to those allowed by law or to those the patient requests; that the treatment will be
recommended only for the symptoms believed to be real and will be discontinued for
those that appear unreal.

Multiple Organ Symptoms

Diagnosis of malingering, factitious disorder, and feigning is usually not difficult if the
behavior is within the areas of expertise of the doctor. The diagnosis may become
difficult if the manifestation crosses over multiple organs, requiring various specialty
training. The diagnosis can become difficult when there is also objective evidence for
associated organic disorder like trauma, weakness, or disabilities but not adequate to
account for the severity of the symptoms or the extent of the complaint. When there is
reasonable evidence for malingering in one form of manifestation, it may make it easier
to diagnose the others.

Unreasonable Expectations
Basically there are three types of unreasonable expectations, most of which can be
resolved through direct discussion:

1. The patient is unaware that he has unreasonable

expectations or feels entitled to certain services beyond the
norm (for example, expecting to be seen right away without
having an urgent condition, expecting to be seen at off hours
and holidays simply for personal convenience, making
frequent unwarranted calls). A patient said, “We sent a man
to the moon; why can’t we treat this cancer?” Another
person said, “I have the same illness my friend had” and his
 doctor “cured” him. “My grandfather served this country in
the war; he deserves better,” said a person. She did not
want his respirator to be discontinued although he was brain
dead. The doctor may wish to accommodate some
expectations, discuss and explain certain misunderstandings,
and turn down other requests. Such persons are not difficult;
they usually are uninformed. It may take time and effort to
satisfy them, but they need compassion and understanding.
2. The expectation is inappropriate or in part unethical, such as
requesting to certify a document partly false, to prescribe
stronger medication or treatment not needed, or a request
for a permanent disability certificate while a temporary one is
adequate. Here, there is a need to explain what part is
inappropriate or unethical and cannot be done and what part
would be possible to do or can be accommodated. The
patient first needs to understand that the request is
improper, unethical, or unlawful then needs to understand
that it is wrong to expect the doctor to be honest with the
patient but not with others.
3. The expectation is unethical or illegal, such as: an addict
asking for a narcotics prescription, one asking to give or to
sign false documents, or another request for a treatment
inappropriate or contraindicated for the illness. Here one has
to explain unambiguously that such a deed is inappropriate,
unethical, or illegal and it will not be done. If the patient
cannot understand such issues and the requests persist, it is
wise to sever the relationship.
Finally, it may be stressful, discouraging, or frustrating to deal with such issues, especially
in the beginning of the practice. However, these are not unique for caregivers. Practicing
medicine still remains one of the unmatched professions. The satisfaction of relieving
pain and suffering surpasses many other good deeds one can do. It is just the matter of
learning how to solve or to deal with difficulties, as is the case for every profession. Even
when a patient or a family is perceived to be “difficult,” or stressful to deal with, it is
unwise and unprofessional to get angry or to ignore them; in the end, it is difficult to be a
patient.
The cultural, historical, and political events of where we are born and/or grow up
influence our way of thinking. We are “culturally diverse.” Yet, when we get a disease, we
feel the same pain and symptoms, become vulnerable to the same feelings, and have the
same hopes. We all feel the same disability that a disease causes, yet the degree of our
suffering may differ based on culture, custom, expectation, and/or faith. What
physiologically alters the functions of the body may be thought of as disease; what one
suffers from the disease may be thought of as illness. To treat the former, we need
science and medical knowledge; for the latter, we need awareness of the patient’s
background, knowledge, culture, and personality. To treat such a patient one needs to
deal with both the disease and the illness.

Each patient is entitled to be treated as an individual and “all human beings are born free
and equal in dignity and rights” [1]. Certain emotional needs are universal. Every patient
wants to be respected and treated as a person, not as a number, and to be assured that
the doctor is knowledgeable about the disease. The patient wants to be assured that the
doctor is making a serious attempt to treat the disease, relieve the pain, and is
accessible. To convey information or to treat the illness one needs to consider the cultural
and individual views that may have specific significance to the patient.

A patient from a different culture may suffer not only from the disease but also from the
burden of being “different.” The difference stems from beliefs, bias, and attitude by the
patient, by the doctor, and by the system. The stronger the attachment to such views and
beliefs, the harder it is to communicate and to treat. Language barrier is a common
source for patients’ unhappiness, misunderstanding, and lack of follow-up. Immigrants
often can understand more than they can speak, yet it is better to communicate with
them through an interpreter especially through an official one when the patient needs to
know enough to give informed consent.

Many men and women find it uncomfortable to expose parts of their bodies during
examination. Certainly there is no need to expose more than what the evaluation or
examination requires. Some may be uncomfortable to be examined by a doctor of the
opposite sex and need an appropriate examiner. However, to just assume certain
preferences based on hearsay, culture, or religious background may be wrong and could
result in avoiding communication or examination needed by the patient.

On one occasion, we had a patient, a nun, suffering from severe low back pain. Several
previous evaluations, including a myelogram test, failed to come up with a diagnosis,
and her physician had doubted the veracity of her pain. A rectal examination revealed a
large tumor in the lower part of her sacrum. In previous evaluations, this examination
was not done by her physicians out of “respect,” a respect she never asked for, nor did
she appreciate.

Bias and Prejudice

Preconceived ideas or opinions about groups or individuals can influence and hinder
communication. While a person may need a different way of communication, the basic
rights for informed consent are the same for all patients. Individuals of different cultural
appearance or language can be vulnerable to a discriminatory attitude. Bias and
prejudice are major obstacles to harmonious and effective communication, for we lose
our fairness, become self-righteous, and are likely to see the “difference” with a critical
eye, not with needed understanding. Gordon. W. Allport [2], a social psychologist, wrote

Man has a propensity to prejudice… This propensity lies in his normal and natural
tendency to form generalizations, concepts, categories, whose content represents an
oversimplification of his world of experience.

One noxious element of bias and prejudice is that we often are unaware of their presence
within us, especially when we associate mostly with those who have similar views.
Because there may be a certain degree of truth, certain anecdotes, or certain historical–
geographic occurrence, our biased mind may use those issues as evidence to make
generalizations. To get rid of our bias and prejudice is not easy unless we first recognize
and accept their presence within us. We then must be willing to change and make
judgments based on evidence and standards of fairness.

A patient may have a certain bias or prejudice against the doctor or have a strong
attachment to certain beliefs that prevent effective communication or treatments. That
attitude may present itself as being “difficult,” “critical,” or “unwilling” to receive
appropriate care. The person, however, is still a patient, vulnerable and at risk. The goal
is not to prove that the patient is wrong, to correct him, or to take it personally. It is
about helping a patient in need of medical help who, like others, is entitled to his own
view. A kind explanation and a caring approach may bring comfort and cooperation.

It is important not to confuse the patient’s preference with bias. A patient may be more
comfortable with a doctor of a certain age, gender, or language, or even with a certain
 religion; that is the patient’s prerogative. This is different from having bias or prejudice
against people of a certain culture, race, or religion. In the latter cases, the needed trust
may not develop and if the feeling remains strong, it is best to facilitate the patient’s
transfer to a doctor or to a place where the patient feels more comfortable.

Cultural Views and Family Participation

To be considerate and thoughtful of individuals from varied cultures is not the same as
treating them differently. One simply needs to be mindful of issues important to certain
individuals from different cultural backgrounds. The following few examples of surveys
show certain cultural views.

Sam Chan [3] writes that Asian languages employ communication patterns that “promote
harmonious social interaction” like reluctance to criticize or contradict overtly and that a
significant amount of information is conveyed through nonverbal forms of communication.
He indicates that touching the head, including that of a child, is “often considered
threatening or offensive by Cambodians, Lao, and some Buddhists because of the
spiritual belief that the head is the most sacred part of the body.”

Of 241 Caucasian, Pakistani, and Indian patients attending a general practice in Bradford,
England, Ahmad and coworkers [4] examined the relationship between choice of general
practitioner and the patient’s fluency in English and the general practitioner’s ethnicity
and sex. They found linguistic and broad cultural concordance between the patient and
the general practitioner was more important in the choice of doctor than the gender of
the general practitioner. They also found that 62 percent of Pakistani women and 21
percent of Indian women objected to examination by a male doctor.

Ali and coworkers [5] compared the attitude toward cancer and about unmet needs of
sixty-one American and sixty-six Egyptian patients who were receiving chemotherapy or
radiotherapy. They found five categories of attitudes for the American and seven for
Egyptian patients:

ericans:
° Attitudes toward cancer:
(a) fighting spirit and adaptation
(b) fear/anxiety/disbelief
(c) hope
(d) passivity in plan of care
(e) faith
° Unmet needs:
(a) information
(b) needs related to treatment side effects
(c) psychological support
ptians:
° Attitudes toward cancer:
(a) stoicism and fatalism
(b) dependency
(c) compliance with the medical regimen
(d) anxiety/fear/insecurity,
(e) powerlessness
(f) hope and optimism
(g) family support
° Unmet needs:
(a) relief from dependency
(b) relief from physical symptoms
(c) information

Phungrassami and coworkers [6] asked 106 patients receiving radiotherapy for cancer in
Thailand to see what proportion of the Thai patients knew about their diagnosis; only
sixty-seven patients (63.2 percent) knew. A minority of patients wanted to be told their
diagnosis by a relative in order to cope with it better emotionally. Issues like inability to
make up one’s mind, becoming upset, losing hope, and denial were among the
statements by those who did not want to know.

In Japan, the physicians are divided into those who usually tell and those who usually do
not tell the truth to the patients who have cancer [7]. Those who tell assert that the
patients want to be told; telling has the advantage of not telling a lie, and few problems
would result by telling. Those who do not tell assert that most patients themselves do not
want to be told, that family wishes cannot be ignored, family members inhibit the shock
of disclosure, and most Japanese think that cancer is equal to death. They assert that
one is to let the spouse, parent, or children of the cancer patient be told. In general, it
seems that “physicians, as well as families and patients, display an aversion to taking
responsibility for the potential risks of disclosure.”

There are numerous studies and surveys in literature indicating certain specifics in
custom, behavior, and beliefs of countries or cultures. The monograph series by the
Center for International Rehabilitation Research Information & Exchange (CIRRIE) [8]
contains a review of the literature regarding general information about the culture, its
values, and recommended ways to interact with foreign persons in the United States.

Disturbing Thoughts
Feelings of guilt, regret, or blame are common when one becomes ill. Some may feel
they have sinned, others regret having done certain acts, and some blame others. A
mother may feel she has committed a sin that caused her child to be born disabled or
become sick; she may not even know which sin. A person with cancer of the lung may
regret smoking, and a person who has a heart attack may blame another for “upsetting”
him. Regardless of legitimacy of the assumption, the feelings may cause depression or
anger and add to the burden of the disease. The intensity of such feelings varies based
on belief and cultural views.

A part of medical interviews is to become aware of such notions. The doctor, as a

teacher, can help the patient resolve such feelings. In my experience, the mother who
blames herself often does feel comfort by learning the unrelated nature of the disease;
the smoker may feel better by attempting to help others avoid smoking; and the blamer
may feel less angry by learning the unfounded nature of the view and the unfairness of
the allegation.

Family Participation and Cultural Difference

In most cultures, the family frequently accompanies the patient, makes suggestions,
gives support, and participates in the patient’s care. Some patients may not mind family
participation, whereas others do. Some families are actually better informed and are of
significant help to the patient in many ways. The issue is not about interfering with the
patient’s autonomy; it is about helping the patient make decisions.

On one occasion, there was no way that I could discuss, explain, or find the views of an
adult female with a tumor who was alert and appeared reasonably competent. Any
time I tried to discuss the impending operation with her, she said she would do
“anything” her older brother decides. “You need to talk to him,” she said. In her
culture, men make the decisions.

Some patients willingly delegate the decision to the family or to another person. Thus, it
is important that the family or the person know a reasonable amount about the condition
to enable them to make appropriate decisions for the patient. If there is any language
barrier, it is prudent to have an independent interpreter to translate the patient’s concern
and views about evaluation, treatment, and about the patient’s desire as to the extent of
family involvement.

In an interview of 142 patients at the Iranian Institute for Health Sciences Research,
Montazeri and coworkers [9] found that 52 percent of cancer patients did not know their
diagnosis and 48 percent did. They studied the quality of life by using the European
Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC
QLQ-C30) [10] and found those “who did not know their cancer diagnosis had a better
physical, social, and emotional quality of life.” While that may help some patients
emotionally, one cannot assume that the lack of knowledge of the diagnosis is desirable
or acceptable by other patients in the same culture.

A paternalistic attitude is not limited to the family alone; it also occurs among some
physicians. The degree of that is different in various cultures and/or countries. For
example, a survey of twenty internists in China and twenty in the United States [11]
showed nineteen (95 percent) of the US internists indicated that they would inform a
patient with cancer of her diagnosis; none of the Chinese internists would. The one
abstaining US physician had indicated that he would eventually intend to tell the patient
but preferred to break the bad news gradually. In accordance with family wishes, 5
percent of US physicians would continue chemotherapy against the patient’s wishes,
while 65 percent of Chinese would. However, when asked if they would tell a patient with
AIDS not expected to survive for more than six months, eighteen (90 percent) of the
Chinese and all twenty (100 percent) of the US internists responded that they would.

It would be a mistake to assume that each person of the same land, clothing, language,
or cultural background has the same attitude or belief. Most surveys apply to a certain
percentage of the population and can vary in different eras. Individuals may change their
attitude through education, information, and emigration. Nevertheless, knowledge of
customs, attitudes, and beliefs about certain cultures is essential. In general,
assumptions, generalizations, and stereotyping are wrong. It is best that, at a certain
appropriate time, one seek the patients’ views as to the kind of information they want to
know and what to avoid.

It is neither wise nor fair to abandon the responsibly of communication with patients or to
delegate that entirely to others. Even when there is a complete language barrier, just by
observing the doctor’s involvement and discussion with the family would give comfort to
the patient. In the end, we suffer more when we are left in the darkness of not knowing
what is happening to us, or in the loneliness of being left with our own assumptions.
What are alternative treatments?
Frequently, patients seek their physicians’ opinion or advice about alternative medicine.
Alternative medicine is a series of practices like chiropractic, acupuncture, biofeedback,
naturopathic medicine, yoga, traditional Chinese medicine, and homeopathy used to treat
patients with various symptoms and diseases; most of them were initiated centuries ago,
and prior to the advancement of conventional medicine. They are not based on scientific
evidence or scientific experiments; they are based on experience. Alternative medicine is
not an option between two or more conventional treatments that a physician and a
patient may jointly choose, such as surgery versus radiation therapy. It is instead of
conventional medicine. Complementary medicine is combined standard medical care with
alternative medicine, such as the usage of acupuncture combined with conventional
treatment for cancer.

Complementary and Alternative Medicine (CAM)

According to NIH Senior Health, CAM “refers to medical systems, practices, or products
that are not thought of as standard care. Standard medical care is care that is based on
scientific evidence and accepted by conventional medicine.” [1]

Integrative medicine “is a total approach to care that combines standard medical
treatments with CAM practices that have shown the most promise.” [1]

Whole medical systems “refers to complete systems of care that have evolved over time
in different cultures and parts of the world” [1]. Whole medical systems may include
practices from the three categories mentioned above.

The National Center for Complementary and Alternative Medicine

(NCCAM)
NCCAM is one of the twenty-seven centers of the National Institutes of Health (NIH) [2]
that “sponsors and conducts research using scientific methods and advanced
technologies” to study complementary and alternative medicine (CAM). At present, they
are not considered to be part of conventional medicine. They are divided into [3]:

Biologically based practices, like dietary supplements, vitamins

Energy medicine, like effect of magnetic fields on health and healing touch (by passing
hand or gently touching the person’s body to try to identify imbalances in the body’s
energy field)

Manipulative and body-based practices, like spinal manipulation by chiropractors,

massage, and reflexology (pressure points on the feet or hands are used to help other
parts of the body relax and heal)

Mind-body practices, to affect the mind-over-body function, like yoga, meditation, and
imagining arts, like scene, music, dance

While NCCAM provides information, it encourages patients to “discuss any decisions about
treatment or care with their healthcare provider.” NCCAM considers its mission “to
explore complementary and alternative healing practices in the context of rigorous
science, train CAM researchers, and disseminate authoritative information to the public
and professionals” [4]. When a physician advises a patient, makes a referral, or suggests
dos or don’ts, these are all forms of communication. They carry medical and ethical
obligations for being truthful and sincere, and one needs a reasonable amount of
knowledge about the veracity and the effectiveness of the treatment. Recognizing the
autonomy to choose, the patient still is entitled to hear the doctor’s honest opinion. Thus,
to respond to the patient’s questions may become a dilemma for a physician since, as
follows, there are varied opinions.

There are numerous articles in the literature, pro or con, on alternative and
complementary medicine. Some criticize the practice very harshly; others, especially
those who believe in it or had used it, express satisfaction and benefit. Richard Dawkins,
a biologist, [5] defines it as a “set of practices which cannot be tested, refuse to be
tested, or consistently fail tests.” The opinion of physicians is also varied. In a survey [6]
of 276 physicians in Denver, Colorado, 9 percent felt very positive, 35 percent somewhat
positive, 40 percent neutral, 14 percent somewhat negative, and 2 percent very negative
in discussing alternative and complementary medicine with their patients. Furthermore,
48 percent of physicians had recommended CAM to a patient, and 24 percent had
personally used CAM.

Use of complementary and alternative medicine (CAM) has grown rapidly among the US
public during the past three decades. Approximately 38 percent of adults and
approximately 12 percent of children are using some form of CAM [3], with an out-of-
pocket cost of $33.9 billion, 11.2 percent of the total out-of-pocket expenditures on
healthcare. Add to this $11.9 billion on CAM practitioner visits, equivalent to
approximately one-fourth of the total $49.6 billion out-of-pocket cost for physician visits
[7]. CAM is used by people from various backgrounds. In the United States, it is used
more among women, people with higher education, and those with higher incomes [8].
They often use herbal therapy, deep breathing, meditation, massage therapy, and/or
yoga. CAM users often are interested in natural products, fish oil, glucosamine, ginger
supplement and soy supplement, and techniques such as acupuncture and naturopathy.
Many patients, especially with musculoskeletal pain, first seek chiropractic treatment. If
their pain or condition continues, they seek conventional treatment.

Some patients make a serious attempt to receive alternative medicine. Occasionally,

patients with cancer refuse or abandon conventional medical treatment in favor of
alternative medicine. Some may even travel far, occasionally out of the country, to
receive it. They would spend the money they may need most in their terminal stages
without any medical benefit. Others seek alternative medicine “in case it helps” or “to
make sure that they do everything they could.” This usually occurs with patients who are
afraid of operations and chemotherapy or are disappointed with the lack of cure of their
disease through conventional medicine. Some patients are impressed by the time spent
on them and the attention given to them by the practitioners of alternative medicine.
Others’ desires may be based on cultural familiarity with the treatments. To some, terms
used like “natural,” “safe,” “no side effects,” “no drug reaction,” or “encourages the body’s
own physiologic reaction” are appealing.

Based on biology and the body’s defense mechanism, some of the diseases and tissue
injuries recover spontaneously, but a large number do not. That is why treatment through
conventional medicine, based on science, developed. The evidence exists for progress or
cure, in diseases such as bacterial and viral infections, heart and vascular diseases, and
drug treatment for mental diseases. There is also evidence for progress or remission in
certain cancers such as leukemia and cancer of the breast, lung, and prostate. That is not
the case for alternative medicine. One then may ask why so many seek alternative
medicine, so many remain supportive, and why it continues to be practiced even in
countries where science is the main reason for medical progress. While answers may
vary, one answer likely rests in how we define treatment.

Unless there are complications, conditions such as moderate traumatic injuries, cuts,
bruises, and swelling recover spontaneously. The same is true for a large percentage of
back pain and joint pain. Similarly as one ages, joint pain often intensifies and fluctuates
with physical stress and gets better after a certain period; moderate exercise can be
helpful. These are mainly the kinds of conditions that are dealt with in alternative
medicine. Whether one has a conventional approach or an alternative one, the
improvements are spontaneous and the “treatment” is not the main reason for the
recovery, the body itself is. Through scientific experiments, peer review, and demands for
evidence, conventional medicine discards treatments with questionable therapeutic value.
Failure to do that remains the basic criticism in the literature for alternative medicine.

Not all practitioners of alternative medicine agree with every therapy that now is included
under the umbrella of alternative medicine. Nevertheless, there are numerous advertised
measures that are called therapy, without any objective evidence. For example, one
therapist believed that, through massage, she could bring the hair back in bald people.
Some others believe that without touching but by just having their hands hover over a
person, they are able to direct the electricity up and down the body causing recovery. For
such claims at least one needs a randomized trial and objective evidence.

Physicians’ Responsibility and Alternative Treatments

Physicians have different views in responding to questions when asked about alternative
medicine. Some may encourage it, especially when they do not have a good
conventional-based treatment. Some feel obligated to discourage the patient for having
it. Others may find it appropriate to combine it with conventional medicine. NCCAM does
not endorse any product, service, or therapy [9] and indicates that “While scientific
evidence exists regarding the effectiveness and safety of some complementary therapies,
for most there are key questions that are yet to be answered through well-designed
scientific studies—questions such as whether the therapies are safe, whether they work
for the diseases or medical conditions for which they are used, and how those therapies
with health benefits may work.”

Adams and coworkers [10] write, “Although some CAM therapies have been subjected to
randomized, controlled trials, evidence for many types of CAM therapies is quite thin or
simply does not exist… If evidence supports both safety and efficacy, the physician should
recommend the therapy but continue to monitor the patient conventionally.” Others may
consider CAM because it may not “harm” and the cost is born by patients themselves.
Based on “respect” for autonomy, some leave the decision to the patient. Such a
philosophical concept is not limited to alternative medicine. Some may raise the question
as to who is to determine if a treatment is unnecessary so long as the treatment makes
the patient happy. Certain treatments such as life-extending ones in terminal conditions,
tubal ligation, vasectomy, artificial insemination, or certain plastic surgeries are desired
by some because in various ways the treatments contribute to their happiness.

The issue here, however, is not just limited to “autonomy” and to “no harm.” Nor is it
about happiness the patient receives. Those are important, but it is also about the
physicians’ responsibility. In addition to responsibility to patient care, a physician has a
social responsibly that is well-defined by The American Medical Association to “advocate
for social, economic, educational, and political changes that ameliorate suffering, and
contribute to human well-being.” A physician cannot be indifferent on issues as to how
medicine is practiced personally or in the community, how medical resources are
distributed, and how laws can affect the practice of medicine; each physician can
contribute in different ways. Were it not for research, writing, and education by those
before us, we would not have come this far. Little doubt remains that the progress in
medicine came through science and evidence.

Finally, there is no rational reason to have two kinds of medicine, one conventional and
one alternative, as it is not rational to have two kinds of mathematics, physics, or
chemistry, one conventional and the other alternative. The issue of individual autonomy
aside, eventually science is to determine if the effect of a treatment is based on
evidence, especially if public resources are used for treatments. This does not mean that
no treatment is valid unless proven scientifically; experience does count. Yet it is the
scientific approach that can establish the veracity and validity of the experience or
theories. As for the question of what a physician’s response is to be when a patient seeks
advice about alternative medicine, the answer seems obvious. It is not different from
other questions we may be asked; what one communicates must be based on what one
believes to be true.
A patient is an individual with rights that include respect, autonomy, beneficence,
nonmaleficence, and justice. He or she has the autonomy to accept, to refuse, or to
choose a treatment but may not have adequate knowledge to decide. The physician is in
a better position to communicate the knowledge. That is an essential part of the doctor–
patient relationship.

A disease does not affect only our bodies; it also affects our minds. No matter how
astute, a patient cannot grasp the nuances and effects of a disease that one faces, nor
can one clearly understand the impact of the predicted outcome of a treatment conveyed.
Because experiencing pain, disability, or facing death is different from hearing or reading
about it, we may find ourselves different from what we thought we were and unable to
use our autonomy commensurate with our real wishes: we need information,
communication, and guidance.

There may be no treatment for a disease, but the patient still is a patient suffering from
the effects of the disease. To hear that some symptoms can still be treated would give
hope and would reduce the patient’s suffering. “Some patients, though conscious that
their condition is perilous, recover their health simply through their contentment with the
goodness of the physician,” said Hippocrates.

In the end, patients accept treatments not because they entirely understand what we
communicate to them but because they trust us with our knowledge and with our
conscience—with our knowledge to know and to tell the truth as best we know it, with
our conscience to do what we believe is right. To do so, what we convey needs to be
based on ethical standards, truth, compassion, and a sincere attitude.

Medicine is often said to be combined science and art. In a doctor–patient relationship,

communication is likely what is meant by the art. As with science, communication is valid
if it is true and is practiced truthfully. To do so, knowledge is not enough; one needs to
learn how to practice and when to apply it. A good way for the student to learn is to
observe when mentors communicate with patients, then analyze and adopt that style
that seems to help the patient the most and the style with which one feels most
comfortable.
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Caffey, J., “The whiplash shaken infant syndrome: Manual shaking by the expremities with whiplash induce intracranial and
intraoccular bleeding linked with residual permanent brain damage and mental retardation.” Pediatrics, 1974. 54 (4).

Chan, S. “Understanding Cultural Diversity: Asian American Family Roots.” Available from
http://www.dbpeds.org/articles/detail.cfm?TextID=%20397.

Child Welfare Information Gateway. “Mandated Reporting.” Available from http://www.childwelfare.gov/

responding/mandated.cfm.

CIRRIE (Center for International Rehabilitation Research Information & Exchange), “The Rehabilitation Provider’s Guide to
Cultures of the Foreign-Born.” Available from <http://cirrie.buffalo.edu/monographs/index.php#content>.

Clusmann, H., C. Schaller, and J. Schramm, “Fixed and dilated pupils after trauma, stroke, and previous intracranial
surgery: management and outcome.” Neurol Neurosurg Psychiat Pract Neurol, 2001. 71.

Colon, V.F., “10 ways to reduce medical malpractice exposure.” Physician Executive, 2002. 28 (2).

Common Good. “The Fear of Litigation Study: The Impact on Medicine, Executive Summary,” 2002. Available from
http://regulation2point0.org/wpcontent/uploads/downloads/2010/04/related_02_05.pdf.

Consumer Reports, “Get better care from your doctors,” February 2007. Available from
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Dowden, B. and N. Swartz. “Truth.” Last updated: September 17, 2004; last viewed August 31, 2012. Available from
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Dunham, S. S., “A Two-Part Look at Lawyer Ethics,” 16th Annual Law & Higher Education Conference, 1995. Available from
http://justice.law.stetson.edu/
excellence/Highered/archives/1995/A Two Part Look at Lawyer Ethics.pdf.

Edgren, E., et al., “Assessment of neurological prognosis in comatose survivors of cardiac arrest.” The Lancet, 1994. 343
(8905).

Elwyn, T.S., et al., “Responsibility and cancer disclosure in Japan.” Soc Sci Med, 2002. 54 (2).

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Feldman, M.D., et al., “Chinese and U.S. Internists Adhere to Different Ethical Standards.” J Gen Intern Med, 1999. 14
(8).

Finkielman, J.D., et al., “Mortality rate and length of stay of patients admitted to the intensive care unit in July.” Crit Care
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Gersten, Dennis, “The Modern Oath of Hippocrates,” Available from http://www.imagerynet.com/

hippo.ama.html.

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Groves, J.E., “Taking care of the hateful patient.” N Eng Med J, 1978. 298 (16).

Gruen, R.L., et al., “Professionalism in surgery.” J Am Coll Surg, 2003, 197 (4).

Hanson, L., D. M., and G. J., “What is wrong with end-of-life care? Opinions of bereaved family members.” J Am Geriatr
Soc, Nov. 1997, 45 (11).

Hekmatpanah, J., P. Pannaraj, and L. Callans, “Head Injury in Abused Children (Review of 190 Cases Over 30 years)”. J
Neurosci Nurs, February 2002. 34 (1).

Helfer, R.E., T.L. Slovis, and M. Black, “Injuries Resulting When Small Children Fall Out of Bed.” Pediatrics, 1977. 60 (4).

Henning, P., “Lawyers, Truth, and Honesty in representing Clients,” Notre Dame J. L. Ethics & Pub Pol’y, 2006, 20.

Hippocrates, “The Hippocratic Oath”. Available from http://www.nlm.nih.gov/hmd/greek/greek_oath.html.

Ho, K., et al., “A comparison of admission and worst 24-hour Acute Physiology and Chronic Health Evaluation II scores in
predicting hospital mortality: a retrospective cohort study.” Critical Care, 2006. 10 (1).

Horsley, J.E. and J. Carlova, Testifying in Court: A Guide for Physicians, 1983, New Jersey: Oradell: Medical Economics
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University Press.

Kempe, C., et al., “The battered-child syndrome.” JAMA, 1962. 181.

Knaus, W., et al., “APACHE II: a severity of disease classification system.” Crit Care Med., 1985. 13 (10).

Kübler-Ross, E., On Death and Dying, 1969, New York: The Macmillan Company.

Larcher, V., “ABC of adolescence. Consent, competence, and confidentiality,” BMJ, 2005. 330.

Legal Information Institute and Cornell Law School, Federal Rules of Evidence. Rule 702 (Article 7).

Le Gall, J.R., S. Lemeshow, and F. Saulnier, “A New Simplified Acute Physiology Score (SAPS II) Based on a
European/North American Multicenter Study.” JAMA, 1993, 270 (24), 22 Dec.

Lemeshow, S., et al. “Mortality Probability Models (MPM II) Based on an International Cohort of Intensive Care Unit
Patients.” JAMA, 1993. 270 (20), 24 Nov.

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2005. 71 (10).

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Russell, B., Religion and Science, 1961, New York: Oxford University Press.

Schein J.R., et al., “Patient-controlled analgesia-related medication errors in the postoperative period: causes and
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Shields, W.M.J.D., “Truth in Legal Practice.” J Philos Sci Law, November 2003.

Simon, R.I., Clinical Psychiatry and the Law, 1987, Washington, DC: American Psychiatric Press, Inc.

The Stanford Encyclopedia of Philosophy (Winter 2012 Edition), Edward N. Zalta (ed.), Available from
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Sullivan, H.S., The Inter-personal Theory of Psychiatry, 1953, W. W. Norton & Co: New York.

Tebble, N.J., D.W. Thomas, and P. Price, “Anxiety and self-consciousness in patients with minor facial lacerations.” J Adv
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Uelmen, G., Lessons from the Trial: People v. O.J. Simpson, 1996, Kansas City, MO: Andrews and McMeel.

United Nations. “Convention on the Rights of the Child.” Part 1, Article 1, December 12, 1989. Available from
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United Nations, “The Universal Declaration of Human Rights, Article 1.” December 10, 1948. Available from
http://www.un.org/en/documents/udhr/.

US Courts. “Commonly Used Terms.” Available from http://www.uscourts.gov/library/glossary.html.

US Department of Health and Human Services. Administration for Child and Family. “Definition of Child Abuse and Neglect
in Federal Law,” 2010. Viewed August 22, 2012. Available from http://www.childwelfare.gov/
can/defining/federal.cfm.

US Department of Health and Human Services. Administration for Child and Family. “Fourth National Incidence Study of
Child Abuse and Neglect (NIS-4)” Executive Summary, viewed August 22, 2012. Available from
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research/project/national-incidence-study-of-child-abuse-and-neglect-nis-4-2004-2009.

US Department of Health and Human Services. Administration for Child and Family. “Summary Child Maltreatment 2007,”
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 References

Chapter 1: Doctor–patient Communication and the Law

Schloendorff, M.E. “Appellant, v. The Society of the New York Hospital, Respondent,”
Court of Appeals of New York, 211 N.Y. 125; 105 N.E. 92. Decided April 14, 1914.
Prepared by Tony Szczygiel. Available from
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Kant, I., Groundwork for the Metaphysics of Morals, edited and translated by A. W. Wood,
2002, New Haven: Yale University Press, 58 [AK4:441].

Annas, G.J., “Bioterrorism, Public Health, and Civil Liberties,” N Engl J Med, 2002. 346
(17): p. 1337–42.

Beecher, H.K., “Ethics and Clinical Research,” N Engl J Med, 1966, 8 (24): p. 1354–60.

Rothman, D.J., Strangers at the Bedside: A history of how law and bioethics transformed
medical decision making, 2003, New York: Aldine de Gruyter, p. 51.

Gray, F.D., The Tuskegee Syphilis Study: The real story and beyond, 1998: Montgomery,
AL: Black Belt Press.

President’s Advisory Commission on Consumer Protection and Quality in the Health Care
Industry. “Consumer Bill of Rights and Responsibilities for Health Professional
Information,” 1998. Available from http://archive.ahrq.gov/hcqual/final/append_a.html.

Novack, D.H., et al., “Changes in physicians’ attitudes toward telling the cancer patient,”
JAMA, 1979, 241 (9): p. 897–900.

Chapter 2: Law Is Not Enough

Aristotle, translated by J. A. K. Thomson, The Ethics of Aristotole. The Nicomachean

Ethics, p. 63. Revised ed., 1976, London: Penguin Books.

Bonhoeffer, D., Ethics, 1963, New York: Macmillan Publishing Co., Inc.

Russell, B., Religion and Science, 1961, New York: Oxford University Press.
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University Press.

American Medical Association. “AMA Code of Medical Ethics, Principles of Medical Ethics.”
Available from http://www.ama-assn.org/ama/pub/physician-resources/medical-
ethics/code-medical-ethics/principles-medical-ethics.shtml.

Gersten, Dennis, “The Modern Oath of Hippocrates,” Available from

http://www.imagerynet.com/
hippo.ama.html

Hippocrates, “The Hippocratic Oath”. Available from

http://www.nlm.nih.gov/hmd/greek/greek_oath.html.

American Board of Internal Medicine Foundation, “Medical Professionalism in the new

millenium: A physician’s charter,” Ann Intern Med, 2002. 136 (3): p. 243–46.

Dowden, B. and N. Swartz. “Truth.” Last updated: September 17, 2004; last viewed
August 31, 2012. Available from http://www.iep.utm.edu/truth/.

. Osler, W., Counsels and Ideals & Selected Aphorisms, 1985, Birmingham: The Classics of
Medicine Library, p. 83.

. Gruen, R.L., et al., “Professionalism in surgery.” J Am Coll Surg, 2003, 197 (4): p. 605.

Chapter 3: Stages of Communication

Sullivan, H.S., The Inter-personal Theory of Psychiatry, 1953, W. W. Norton & Co: New
York, p. 184.

Hippocrates, “The Hippocratic Oath”. Available from

http://www.nlm.nih.gov/hmd/greek/greek_oath.html.

American Medical Association. “Patient Physician Relationship Topics: Patient

Confidentiality.” Available from http://www.ama-assn.org/ama/pub/physician-
resources/legal-topics/patient-physician-relationship-topics/patient-confidentiality.shtml.

Privacy Rights Clearinghouse. “Fact Sheet 8: Medical Records Privacy.” Available from
http://www.privacyrights.org/fs/fs8-med.htm.

Consumer Reports, “Get better care from your doctors,” February 2007. Available from
http://www.consumerreports.org/health/doctors-hospitals/choosing-the-right-doctor-
getting-better-care/overview/0207_docs_ov.htm.

American College of Surgeons. “Inspiring qualities: Statements on Principles.” Viewed

August 22, 2012; last revised September 18, 2008. Available from
http://www.facs.org/fellows_info/statements/stonprin.html#anchor171960.

Rosenbaum, E.E., A Taste of My Own Medicine, When the Doctor Is the Patient, 1988,
New York: Random House.

Kübler-Ross, E., On Death and Dying, 1969, New York: The Macmillan Company.

Schein J.R., et al., “Patient-controlled analgesia-related medication errors in the

postoperative period: causes and prevention.” Drug Saftey, 2009. 32 (7): p. 549–59.

Chapter 4: Consent

Simon, R.I., Clinical Psychiatry and the Law, 1987, Washington, DC: American Psychiatric
Press, Inc., p.101.

American Medical Association. “Informed consent.” Viewed August 22, 2012. Available
from http://www.ama-assn.org/ama/pub/category/4608.html.

American College of Surgeons. “Inspiring qualities: Statements on Principles.” Viewed

August 22, 2012; last revised September 18, 2008. Available from
http://www.facs.org/fellows_info/statements/stonprin.html#anchor171960.

Tebble, N.J., D.W. Thomas, and P. Price, “Anxiety and self-consciousness in patients with
minor facial lacerations.” J Adv Nurs, 2004. 47 (4): p. 417–26.

Abdullah, A., et al., “Visible scars and self-esteem in pediatric patients with burns.” J
Burn Care Rehabil, 1994. 15 (2): p. 164–68.

Gray, F.D., The Tuskegee Syphilis Study: The real story and beyond, 1998: Montgomery,
AL: Black Belt Press.

Beecher, H.K., “Ethics and Clinical Research,” N Engl J Med, 1966, 8 (24): p. 1354–60.

Basson, M.D., et al., “Informed Consent for Screening Sigmoidoscopy in a Veterans

Administration Population.” Dis Col Rectum, 2004. 47 (11): p. 1939–46.

Chapter 5: Communicating Bad News

Kübler-Ross, E., On Death and Dying, 1969, New York: The Macmillan Company.

Beckman, H.B., et al., “The doctor–patient relationship and malpractice. Lessons from
plaintiff depositions.” Arch Intern Med, 1994. 154 (12): p. 1365–70.

National Academies Press. “Preventing Medication Errors: Quality Chasm Series.” 2007.
Available from http://www.nap.edu/openbook.php?record_id=11623&page=R1.

Brennan, T.A., et al., “Incidence of adverse events and negligence in hospitalized

patients. Results of the Harvard Medical Practice Study I,” N Engl J Med, 1991. 324(6): p.
370–76.

Woo, A., U. Ranji, and A. Salganicoff. “Reducing Medical Errors,” May 2008. Available
f r o m http://www.kaiseredu.org/Issue-Modules/Reducing-Medical-Errors/Background-
Brief.aspx.

Neily J, M.P.D.E.N., and et al., “Incorrect surgical procedures within and outside of the
operating room.” Arch Surg–Chicago, 2009. 144 (11): p. 1028–34.

Chapter 6: Communication with Family on Behalf of the Patient

United Nations. “Convention on the Rights of the Child.” Part 1, Article 1, December 12,
1989. Available from http://www.cirp.org/library/ethics/
UN-convention/.

Larcher, V., “ABC of adolescence. Consent, competence, and confidentiality,” BMJ, 2005.
330: p. 353–56.

US Department of Health and Human Services. Administration for Child and Family.
“Fourth National Incidence Study of Child Abuse and Neglect (NIS-4)” Executive Summary,
viewed August 22, 2012. Available from http://www.acf.hhs.gov/programs/opre/
research/project/national-incidence-study-of-child-abuse-and-neglect-nis-4-2004-2009

US Department of Health and Human Services. Administration for Child and Family.
“Summary Child Maltreatment 2007,” Available from
http://www.acf.hhs.gov/programs/cb/pubs/cm07/summary.htm.

Hekmatpanah, J., P. Pannaraj, and L. Callans, “Head Injury in Abused Children (Review
of 190 Cases Over 30 years)”. J Neurosci Nurs, February 2002. 34(1): p. 14–19.

US Department of Health and Human Services. Administration for Child and Family.
“Definition of Child Abuse and Neglect in Federal Law,” 2010. Viewed August 22, 2012.
 Available from http://www.childwelfare.gov/can/defining/federal.cfm.

Caffey, J., “Multiple fractures in the long bones of infant suffering from chronic subdural
hematoma.” Am J Roentgenol, 1946. 56 (2): p. 163–73.

Kempe, C., et al., “The battered-child syndrome.” JAMA, 1962. 181: p. 16-26.

Caffey, J., On the theory and practice of shaking infants: Its potential residual effect of
permanent brain damage and mental retardation.” Am J Dis Child, 1972. 124 (2): p. 161–
69.

. Caffey, J., “The whiplash shaken infant syndrome: Manual shaking by the expremities
with whiplash induce intracranial and intraoccular bleeding linked with residual
permanent brain damage and mental retardation.” Pediatrics, 1974. 54 (4): p. 396–403.

. Helfer, R.E., T.L. Slovis, and M. Black, “Injuries Resulting When Small Children Fall Out of
Bed.” Pediatrics, 1977. 60 (4): p. 533–35.

. Child Welfare Information Gateway. “Mandated Reporting.” Available from

http://www.childwelfare.gov
/responding/mandated.cfm.

. Rothschild, J.M., “Chapter 38. ‘Closed’ Intensive Care Units and Other Models of Care for
Critically Ill Patients.” Available from http://ahrq.hhs.gov/clinic/ptsafety/chap38.htm.

. Bickenbach, J., et al., “Outcome and mortality risk factors in long-term treated ICU
patients: a retrospective analysis.” Minerva anestesiologica, 2011. 77 (4): p. 427–38.

. Finkielman, J.D., et al., “Mortality rate and length of stay of patients admitted to the
intensive care unit in July.” Crit Care Med, 2004 May; 32 (5): p. 1161–65.

. Knaus, W., et al., “APACHE II: a severity of disease classification system.” Crit Care Med.,
1985. 13 (10): p. 818–29.

. Le Gall, J.R., S. Lemeshow, and F. Saulnier, “A New Simplified Acute Physiology Score
(SAPS II) Based on a European/North American Multicenter Study.” JAMA, 1993, 270 (24):
p. 2957–63.

. Lemeshow, S., et al. “Mortality Probability Models (MPM II) Based on an International
Cohort of Intensive Care Unit Patients.” JAMA, 1993. 270 (20): p. 2478-86.

. Vincent, J. L., et al., “Use of the SOFA score to assess the incidence of organ
dysfunction/failure in intensive care units: Results of a multicenter, prospective study.”
Crit Care Med, 1998, Nov. 26 (11).

. Ho, K., et al., “A comparison of admission and worst 24-hour Acute Physiology and
Chronic Health Evaluation II scores in predicting hospital mortality: a retrospective cohort
study.” Critical Care, 2006. 10 (1): p. R4.

. Clusmann, H., C. Schaller, and J. Schramm, “Fixed and dilated pupils after trauma,
stroke, and previous intracranial surgery: management and outcome.” Neurol Neurosurg
Psychiat Pract Neurol, 2001. 71: p. 175–81.

. Edgren, E., et al., “Assessment of neurological prognosis in comatose survivors of cardiac

arrest.” The Lancet, 1994. 343 (8905): p. 1055–59.

. Hanson, L., D. M., and G. J., “What is wrong with end-of-life care? Opinions of bereaved
family members.” J Am Geriatr Soc, Nov. 1997, 45 (11): p. 1339–44.

. Azoulay, E., et al., “Half the families of intensive care unit patients experience
inadequate communication with physicians.” Crit Care Med, 2000. 28 (8): p. 3044–49.

. Breen, C.M., et al., “Conflict Associated with Decisions to Limit Life-Sustaining Treatment
in Intensive Care Units.” JGIM, 2001. 16 (5): p. 283–89.

. Kübler-Ross, E., On Death and Dying, 1969, New York: The Macmillan Company.

. Illinois Guardianship & Advocacy Commission. “Health Care Surrogate Act including
amendments” effective January, 1998. Available from http://gac.state.il.us/hcsa.html#6.

. Mangram, A.J., et al., “Families’ perception of the value of timed daily ‘family rounds’ in a
trauma ICU.” Am Surgeon, 2005. 71 (10): p. 886–91.

. Marshall, J.C., “The multiple organ dysfunction syndrome.” Surgical Critical Care Issues
2001. Available from http://www.ncbi.nlm.nih.gov/bookshelf/
br.fcgi?book=surg&part=A5364.

. Nightingale, F., Florence Nightingale to her Nurses, a Selection from Miss Nightingale’s
Addresses to Probationers and Nurses of the Nightingale School at St. Thomas’s Hospital,
ed. R. Nash, 1914, London: Macmillan and Co. Limited. p. 147.

Chapter 7: Communication with Lawyers about Patients

US Courts. “Commonly Used Terms.” Available from

http://www.uscourts.gov/library/glossary.html.

Horsley, J.E. and J. Carlova, Testifying in Court: A Guide for Physicians, 1983, New
Jersey: Oradell: Medical Economics Books.

National Center for State Courts (NCSC), “Examining the work of state courts, 2005: A
national perspective from the court statistics project.” 2006. Available from
http://users.polisci.wisc.edu/kritzer/Teaching/LegalPolicy/NCSC2005.pdf.

Legal Information Institute and Cornell Law School, Federal Rules of Evidence. Rule 702
(Article 7).

Abbott, N. and L. Magnusson, “An Enigmatic Degree of Medical Certainty,” Utah Bar
Journal, 2008.

Henning, P., “Lawyers, Truth, and Honesty in representing Clients,” Notre Dame J. L.
Ethics & Pub Pol’y, 2006, 20: p. 275.

Shields, W.M.J.D., “Truth in Legal Practice.” J Philos Sci Law, November 2003. p. 3.

Dunham, S. S., “A Two-Part Look at Lawyer Ethics,” 16 th Annual Law & Higher Education
Conference, 1995. Available from http://justice.law.stetson.edu/excellence/
Highered/archives/1995/A Two Part Look at Lawyer Ethics.pdf

Common Good. “The Fear of Litigation Study: The Impact on Medicine, Executive
Summary,” 2002. Available from http://regulation2point0.org/wp-
content/uploads/downloads/2010/04/related_02_05.pdf.

. American Bar Association. “Model Rules of Professional Conduct: Preamble & Scope, A
Lawyer’s Responsibilities.” Available from
http://www.americanbar.org/groups/professional_responsibility/publications/model_rules_o

. Uelmen, G., Lessons from the Trial: People v. O.J. Simpson, 1996, Kansas City, MO:
Andrews and McMeel. p. 3, 203.

. Colon, V.F., “10 ways to reduce medical malpractice exposure.” Physician Executive,
2002. 28 (2): p. 16–18.

. American Medical Association. “AMA Code of Medical Ethics, Principles of Medical Ethics.”
Available from http://www.ama-assn.org/ama/pub/physician-resources/medical-
ethics/code-medical-ethics/principles-medical-ethics.shtml
. American Medical Association. “Report of the Board of Trustees, B of T Report 5-A-98
Subject: Expert Witness Testimony,” 1997. Available from
http://www.truthinjustice.org/amareport.htm.

. Dunham, S.S., “A Two-Part Look At Lawyer Ethics.” 16th Annual Law & Higher Education
Conference, 1995. Available from http://justice.law.stetson.edu/excellence/
Highered/archives/1995/A%20Two%20Part%20Look%20at%20Lawyer%20Ethics.pdf.

. Alschuler, A.W., “Lawyers and truth-telling. Roundtable: The Lawyer’s Responsibility to

the Truth, Federalist Society 2002 Symposium on Law and Truth.” Harvard J Law Publ P,
Jan. 1, 2003.

Chapter 8: Difficult Communication

Robinson, G., R. Beasley, and S. Aldington,” From medical student to junior doctor: The
‘difficult patient’,” BMJ, 2006. 14 (7): p. 265–308.

Groves, J.E., “Taking care of the hateful patient.” N Eng Med J, Apr 20, 1978. 298 (16): p.
883-87.

American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders.

4th ed, 1994, Washington, DC: American Psychiatric Association, p. 683.

Chapter 9: Communication and Cultural Differences

United Nations, “The Universal Declaration of Human Rights, Article 1.” December 10,
1948. Available from http://www.un.org/en/documents/udhr/.

Allport, G.W., The Nature of Prejudice, 1979, New York: Perseus Book Group: Basic
Books: p. 27.

Chan, S. “Understanding Cultural Diversity: Asian American Family Roots.” Available from
http://www.dbpeds.org/articles/detail.cfm?TextID=%20397.

Ahmad, W., I. Kernohan, and M.R. Baker, “Patient’s choice of general practitioner:
influence of patients’ fluency in English and the ethnicity and sex of the doctor.” J R Coll
Gen Pract, 1989. 39: p. 153–55.

Ali, N.S., H.Z. Khalil, and W. Yousef, “A comparison of American and Egyptian cancer
patients’ attitudes and unmet needs.” Cancer Nursing, 1993. 16 (3): p. 193–203.

Phungrassami, T., et al., “Disclosure of a cancer diagnosis in Thai patients treated with
radiotherapy.” Soc Sci Med, 2003. 57 (9): p. 1675–82.

Elwyn, T.S., et al., “Responsibility and cancer disclosure in Japan.” Soc Sci Med, 2002. 54
(2): p. 281–93.

CIRRIE (Center for International Rehabilitation Research Information & Exchange), “The
Rehabilitation Provider’s Guide to Cultures of the Foreign-Born.” Available from
<http://cirrie.buffalo.edu/monographs/
index.php#content>.

Montazeri, A., et al., “Disclosure of cancer diagnosis and quality of life in cancer patients:
should it be the same everywhere?” BMC Cancer, 2009. 9 (1): p. 39.

. EORTC QLQ-C30. “A questionnaire developed to assess the quality of life of cancer

patients.” Available from http://groups.eortc.be/qol/questionnaires_qlqc30.htm.

. Feldman, M.D., et al., “Chinese and U.S. Internists Adhere to Different Ethical Standards.”
J Gen Intern Med, 1999. 14 (8): p. 469–73.

Chapter 10: Communication with Patients Seeking Alternative and

Complementary Treatments

NIH Senior Health. “Complementary and Alternative Medicine (CAM).” Viewed Sept. 5,
2012. Available from: http://nihseniorhealth.gov/cam/whatiscam/01.html.

National Center for Complementary and Alternative Medicine (NCCAM). “National Center
for Complementary and Alternative Medicine, NIH Senior health.” Viewed Sept. 5, 2012.
Available from
http://nccam.nih.gov/grants/whatnccamfunds/overviewfunds.htm#wnccam.

National Center for Complementary and Alternative Medicine (NCCAM). “What Is

Complementary and Alternative Medicine?” Created 2008, updated July 2011. Available
from http://nccam.nih.gov/
health/whatiscam/.

National Center for Complementary and Alternative Medicine (NCCAM). “NCCAM Facts-at-
a-Glance and Mission.” February 16, 2009. Available from
http://nccam.nih.gov/about/ataglance.

Dawkins, R., A Devil’s Chaplain, 2003, London: Weidenfeld & Nicolson, p. 180.

Winslow, L.C. and H. Shapiro, “Physicians Want Education About Complementary and
Alternative Medicine to Enhance Communication With Their Patients.” Arch Intern Med,
2002. 162 (10): p. 1176–81.

National Center for Complementary and Alternative Medicine (NCCAM). “Downloadable

Graphics on CAM Costs in the United States,” 2009. Available from
http://nccam.nih.gov/news/camstats/costs/graphics.htm.

National Center for Complementary and Alternative Medicine (NCCAM). “The Use of
Complementary and Alternative Medicine in the United States,” Viewed November 14,
2011. Available from http://nccam.nih.gov/news/camstats/2007/camsurvey_fs1.htm.

National Center for Complementary and Alternative Medicine (NCCAM). “Are you
considering complementary medicine?” Viewed Sept. 5, 2012. Available from
http://nccam.nih.gov/health/
decisions/consideringcam.htm.

. Adams, K.E., et al., “Ethical Considerations of Complementary and Alternative Medical

Therapies in Conventional Medical Settings.” Ann Intern Med, 2002. 137 (8): p. 660–64.