Palliative Care Education Program- Primary Care

Notes for Module 3

Module 3.1
Ethical and Legal Issues
A broad consensus has developed around issues of end-of-life care. The clear and consistent principles directing treatment limitation,
decision making for patients who lack capacity, the use of opioids, physician-assisted suicide, and futility are discussed. This session is
intended to present the broad ethical and legal consensus in end-of-life care. It is not intended to render specific ethical and legal advice to
physicians. It is the individual physician’s responsibility to be familiar with current laws governing his or her practice and to seek legal
counsel if a specific situation requires it.

Objectives
The objectives of this module are to:
describe the broad legal consensus that has developed around issues of end-of-life care
list the common legal myths and pitfalls that can interfere with quality care

Introduction
Traditionally, questions of end-of-life care were resolved through decision making by physicians in conjunction with patients and families. If
the dying patient was a child, such questions were resolved with parents. However, as scientific breakthroughs advanced medical
interventions, new questions arose concerning the appropriate use or discontinuation of these interventions. Generally, legal precedent
follows medical ethical principles in end-of-life care. For instance, physicians are not required to provide treatment that would be ineffective.
Nor are physicians required to provide treatment when a patient with the capacity to make health care decisions (or an authorized health care
agent) has refused such treatment. In fact, it may be more legally problematic for a physician to continue to treat against patient or family’s
wishes.

Law and Ethics

In many countries, law is made by judges (common law), legislatures (statutory law), and executive agencies (regulatory law). Enforcement
is either through the administrative system (licensure suspension or revocation), the civil system (most commonly, monetary judgments, but
in the medical context, often an order to take an action or to stop treatment or the criminal system (fines and/or prison).
End-of-life issues are generally addressed through civil common law or statutory law. Although many important legal principles in end-of-
life decision making are widely accepted, it is important for physicians to become familiar with existing laws in their place of practice.

Resolving difficult cases: role of law and ethics

In any discussion of ethical issues in medicine, legal issues may arise. Both ethics and the law set standards for conduct. The law often
expresses a kind of ethical societal consensus—one that society is willing to enforce through civil judgments or criminal sanctions. However,
there are areas of conduct that the law does not and cannot address. Moreover, going to court as a means of dispute resolution is often a slow
and expensive process; and these are rarely necessary in end-of-life cases. Clinicians facing difficult decisions concerning patients near the
end of life may be aided by consultation with palliative care or ethics consultants and ethics committees. These consultants or committees
usually have developed processes to allow clinicians, patients, and families a forum for the discussion of end-of-life decision making and a
mechanism to provide recommendations regarding ethically appropriate choices in a given situation.

Informed consent
Informed consent is a basic legal and ethical requirement for all medical interventions. Many patients and families (or parents if the patient is
a child) may not have been fully informed of the risks and benefits of the therapy at the time it was begun, nor, often, were they told that
treatment would be withdrawn if the treatment was no longer effective. Knowing the burdens of continued treatment, the fully informed
patient or surrogate may not elect further treatment. Patients and families who refuse further treatment should be told about the consequences
of the discontinuation of treatment, just as they are told the benefits and risks of other interventions.

Information-giving standards: Reasonable information giving is judged partly by the standards of what any good professional would give and
what any reasonable person would want in the same circumstances. Though not legally required, an important ethical goal would go beyond
this to a standard that takes into account what this particular patient would want under the circumstances.
Elements of information: Information must include the nature of the procedure, the risks, the benefits, and the alternatives to it. In deciding
which of the many risks of any intervention to identify in particular, choose the common ones and the serious ones even if rare.
Consent: Consent is as important as information giving, or more so. It must involve proper understanding (for instance, does the patient
understand that the consequence of declining life prolonging intervention is probably an earlier death?). Consent must also be voluntary and
free of coercion.

Procedures of informed consent

Informed consent may be documented. Usually, health care facilities have a predrafted form that can be used. However, documentation is of
no risk management benefit if the process was absent or ineffective. The informed consent process is one of discussion and shared decision
making. Ideally it is woven into regular clinical interaction and reflects a deliberative relationship in which the physician fosters and
advocates for the well-being of the patient, the health care values, and the goals and specific wishes, as reflected in the shared decisions. The
physician should bring news and information to the patient (or parents if the dying patient is a child) about his or her disease and its
management in as timely and sensitive a fashion as possible, bringing it all into focus before settling on a specific decision together.

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Treatment limitation at the end of life
There is a developing consensus of important ethical and legal principles in end-of-life care. Though these principles have not been
unanimously adopted in all countries, the consensus that has emerged has been broadly accepted:
1. Patients may refuse unwanted treatment: The most important of these principles is that patients with decision-making capacity may
refuse unwanted medical treatment, even if this may result in their death. This is based on both the respect for bodily integrity and the
personal liberty interest articulated in the Constitution. The patient has a constitutional right to refuse treatment.
2. Surrogate decision making: Patients who lack capacity to make the decisions at hand have the same rights as those who have capacity.
However, the manner in which these rights are exercised is different. Authorized surrogate decision makers may make decisions to limit
treatment for patients who lack decision-making capacity.
3. Withholding treatment: Withholding life-sustaining medical treatment (such as CPR, intubation, mechanical ventilation, etc) is
considered neither homicide nor suicide. Ethical and legal scholars have drawn a distinction between intentionally causing a patient’s death
and allowing a patient to die by withholding life-sustaining treatment. In addition, there is a growing consensus that both withdrawing and
withholding treatment, if not wanted by the patient or ineffective, can be justifiable.
Courts have also upheld the validity of DNR (do-not-resuscitate) and other treatment limitation orders. Thus, withholding ventilator
assistance that may result in death may be permissible in certain situations, and even parenteral nutrition and hydration may be withheld or
withdrawn under certain conditions as any other form of medical treatment. Physicians should provide the patient (or parents if the patient is
a child) with information about his or her situation, offer choices about all treatments, assist with decision making, and not automatically
assume that ventilators, feeding tubes, or other life-prolonging treatments are required.
There are few situations that cannot be resolved by the physician in collaboration with the patient and family. Only rarely does limitation of
life-prolonging treatment at the end of life require court intervention.

Deciding for the patient without decision-making capacity

Some patients with life-threatening illnesses lose decision-making capacity near the end of life. Many patients become incapacitated at some
period of incapacity at the end of their lives. Limitation of life-sustaining treatment is possible for patients who lack capacity to make medical
decisions. However, it is necessary to first determine incapacity and have arrangements for proxy decision making.

Determining and declaring decision-making incapacity

In assessing a patient’s ability to make a decision regarding health care, one must evaluate 3 elements of the capacity to make health care
decisions.

First, the patient must possess the ability to comprehend the information about the medical problem as well as to appreciate the impact of the
disease and the consequences of various options for treatment, including forgoing treatment.
Second, the patient must possess the ability to evaluate the options by comparing risks and benefits of each option, to deliberate in accord
with the patient’s own values, and to make choices that are not irrational. The patient should also be able to maintain a consistent choice over
time.
Third, the patient should be able to communicate his or her choice.

Generally, determination of the capacity to decide on a course of treatment must relate to the individual abilities of the patient, the
requirements of the task at hand, and the consequences likely to flow from the decision. Thus, when the consequences for well-being are
substantial, there is a greater need to be certain that the patient possesses the necessary level of capacity.
A lack of decision-making capacity may be caused by any break in the chain of decision making: the ability to understand, to reason and
evaluate, and to communicate a decision. Obviously, patients in a coma, infants, young children, and the profoundly mentally disabled lack
decision-making capacity for all medical decisions. Some other patients, such as those at the end of life with significant metabolic
abnormalities, some disorientation, or early dementia, may retain some degree of decision-making capacity. Physicians taking care of patients
at the end of life should make a determination of the patient’s decision-making capacity before each significant health care decision.

Evaluating decision-making capacity can be summarized as follows:

Ability to understand:
- Does the patient have the ability to understand the basic information needed to make a decision?
Ability to evaluate:
- Can the patient reason and weigh the consequences of the decision?
- Does the patient make a decision?
- Is the decision reasonably consistent over time?
Ability to communicate:
- Can the patient communicate the decision?

Declarations of incapacity can be done by a formal, legal statement, but more usually are done by simply recording the evaluation of the
primary physician or a psychiatrist in the medical record. The recorded evaluation should document the basis for declaring the patient
incapacitated. A record of the patient’s lack of decision-making capacity as determined by 2 physicians may be required before a power of
attorney for health care can be activated. Most declarations of incapacity should be for the limited scope of the decision at hand, and the
record should so indicate. Subsequent decisions will require reevaluation.

Decisions for the incapacitated

Once incapacity is determined, physicians should use 1 of 2 criteria or tests that courts have generally used to decide life-sustaining medical
treatment. The first test requires determination that treatment would not be in the best interests of the patient. For example, one court

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applying the test determined that for a patient in a persistent vegetative state, it is not in the patient’s best interest to continue treatment.15
The second test applies the proxy’s substituted judgment to determine whether the patient would have wanted treatment withheld if he or she
had been competent. This test takes into account the patient’s subjective wishes. Decision making that involves the application of advance
directives uses the substituted judgment criterion.

Guardianship
Traditionally, if the patient has made no other provisions, the mechanism for making both medical and non medical decisions for
incapacitated patients has been to establish a legal guardian, that is, a person with legal guardianship. End-of-life decision making for patients
who have never had decision-making capacity (eg, infants and young children, or developmentally disabled adults) generally requires an
individual who is legally able to act in the patient’s best interest, such as a parent or guardian. Additionally, federal regulations (so-called
Baby Doe regulations) apply to end-of-life decisions made for infants and newborns.17 But this mechanism has a number of disadvantages
for the average life threateningly ill patient. The guardianship process is often slow and costly for the patient or family. Moreover, the
guardian is normally expected to make decisions using the traditional best interest standard, which does not always rely on the patient’s
previously expressed preferences. For the parent/guardian of a mature adolescent patient, the conversations eliciting the patient’s wishes are
difficult. Consequently, they may not have taken place. For most adult patients at the end of life, legal guardianship is an option of last resort
for making health care decisions. It may, for instance, be used if the proxy is clearly acting against the patient’s interests and needs to be
replaced.

Terminology of advance directives

Advance directives serve as indicators of patients’ previously expressed desires. The process of discussion, documentation, and
implementation of wishes is termed advance care planning. The most common of the advance directives are the living will (a form of
instructional directive to limit life sustaining medical treatment in the face of a life-threatening illness) and the power of attorney for health
care (an appointment of a health care agent or proxy to make decisions according to the incapacitated patient’s preference). Other types of
instructional directive include personal letters, a values history, and a medical directive.
Advance directives can serve as protection for physicians who, in good faith, follow the directive. Advance directives act as evidence of
patient wishes.

Surrogate decision maker

Patients without advance directives who become incapacitated may have a decision maker appointed from a list of eligible individuals,
including a spouse, family member, or others as prescribed by law. The hierarchy of the individual’s eligibility may vary from country to
country. Surrogacy laws give legal recognition to a process that many physicians used in the past when no one had been appointed as
guardian—namely, turning to the person most likely to be recognized as the appropriate representative of the patient. In countries that do not
have surrogacy laws, physicians often continue to rely informally on the next-of-kin hierarchy from which the surrogacy statutes are adapted
(spouse> children > parents > siblings).

Surrogate decision making

Once a surrogate is identified, he or she must determine the patient’s wishes regarding end-of-life treatment. Where the patient has an
advance directive specifying treatment choices, this may only entail interpreting the directive. Most countries require that a surrogate
determine that it is more likely than not that the patient would have made a particular health care decision (this standard is known as the
preponderance of evidence standard, expressed as “more probable than not”). Some countries require a higher degree of certainty (clear and
convincing evidence, a higher standard than preponderance of the evidence) that the patient would have chosen a particular course of action.
The difficulty in determining whether verbal expressions of health care preferences meet these standards reinforces the importance of written
advance directives. For example, a general comment made by the patient that he or she “would never want to live as a vegetable” does not
give a great deal of guidance as to whether to discontinue life support after an accident that leaves the individual with significant brain
damage, but not in a persistent vegetative state.

The appropriate use of opioids in end-of-life care

The concepts of hospice and palliative care have developed in response to the ethical mandate that patients and families should receive care
that relieves suffering and improves the quality of their lives. Both depend on the appropriate use of opioids to relieve pain, shortness of
breath, and other symptoms. The drug enforcement agency, professional licensure and drug regulation agencies are charged with enforcing
the laws concerning controlled medical substances, such as opioids. Traditionally, these agencies have monitored physicians’ prescriptions
for opioid use. There still is a concern about the problems associated with substance abuse and addiction. However, there is a growing
awareness by physicians and regulatory bodies of the important role of opioids in medical practice.

The principle of double effect recognizes the difference between the provision of adequate treatment that unintentionally hastens death, and
the provision of medication that intentionally causes a patient’s death. Physicians have a responsibility to be aware of the realistic risks
associated with the treatments they offer (eg, the minimal risk of death associated with opioids when prescribed appropriately for pain relief).
Physicians should feel comfortable providing medication, including opioids, using accepted dosing guidelines to alleviate a patient’s pain and
suffering, even if an unintended secondary effect might risk hastening the patient’s death.

Physician-assisted suicide
Perhaps no other end-of-life ethical issue has generated as much controversy as that of physician-assisted suicide. Although there is an ethical
and legal consensus that patient refusal of life-sustaining medical treatment is not suicide, provision of medication with the intent to produce
death is considered to be assisting suicide. Except for some places (eg Oregon), most places have laws that make assisting a suicide by
anyone (including physicians) a criminal offense.

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Futility
Another controversial issue in end-of-life care is the process for determining when medical interventions are no longer effective, especially
when medical personnel and the patient or surrogate disagree about the decision. To guide the process, some general principles can be drawn
from medical practice and case law:
1. Physicians should be careful when thinking that a treatment may be “futile.” In medical decision making when a treatment under
consideration may seem to be futile, the physician should ask, “futile for what goal?” That goal should be defined by the patient or surrogate
(or parents if the patient is a child) in conjunction with the physician.
2. Physicians’ recommendations for limiting treatment should be based as much as possible on objective determination of ineffectiveness, for
the accepted goal rather than subjective opinions about the worth of the intervention or of the patient’s continued life. Where there is concern
or question, a second clinical opinion about the potential effectiveness of treatment may be both beneficial and necessary.
3. Where the patient or family disagrees with the physician’s judgment, ethics consultation or committee review may be advisable.
4. If there is continued disagreement, facilitate transfer of the patient when feasible to another health care practitioner or health care facility
willing to continue or cease treatment.
5. If transfer to another physician or institution is not possible, the intervention need not be offered.
In cases where futility comes up, there is very commonly a major component of unsuccessful communication and strained relationships. Try
to keep communication good, listen well, convey information effectively, and keep an empathic approach. In several studies a correlation
exists between quality relationships and reduced malpractice rates, not only in futility cases but in general.

Confidentiality
Confidentiality concerns are not usually different for patients facing the end of life. There are no major legal differences. In general,
confidentiality should be broken if the absence of information puts an identifiable third party at risk of major damage. Reporting
requirements demand that certain infectious disease diagnoses be reported to public health authorities.

Legal counsel and risk

Physicians have a responsibility to make ethical decisions in the care of patients at the end of life within the law that governs their medical
practice. While ethics committees and consultation may consider legal aspects, they do not act as a legal advisor to the physician and should
not be mistaken as such.
Though there is broad legal consensus on much of end-of-life treatment, some variations in opinion remain and some difficult ethical and
legal issues remain unresolved.
In addition, if the physician works in a managed care organization that has set limits on care that the patient or family disagrees with, the
physician may have to choose to advocate for one party over the other. The physician may also face incentives and disincentives to make
decisions that run counter to the patient’s wishes. But, although there is a duty to the institution, including possibly a contractual one, the
physician carries the direct responsibility for patient care and may have more legal risk than the institution if the patient’s care is
compromised.
When physicians are uncertain as to the approaches to resolving a given case, legal counsel may be sought. However, it is important for the
physician to recognize that hospital counsel represents the health care institution, and may not focus on the needs of the individual physician.
In addition, legal counsel’s primary duty is to protect the client from legal liability, not necessarily to facilitate ethical practice.

Summary
For physicians, the management of patients at the end of their lives may give rise to ethical and legal considerations. However, many of these
issues have been resolved and a broad legal consensus of the appropriate treatment and limitation of treatment in end-of-life care has
emerged. It is important for physicians who are caring for patients at the end of life to understand the ethical and legal consensus, noting
where their jurisdiction’s laws may differ. Most importantly, physicians should remember that the best risk-reduction strategy, from both an
ethical and a legal perspective, is effective communication with the patient and family.

Module 3.2
FUTILITY
Clear and unequivocal situations of medical futility are rare. More often than not the issue is conflict resolution. The physician may be
pursuing unrealistic or unwanted plans.
There may be difficulty for the proxy to perform his or her role. There may be misunderstandings over prognosis. There may be personal
factors such as distrust or guilt, or there may be differences in values. Understanding the nature of the conflict may allow ready resolution.
For intractable difficulties, a fair process for conflict resolution is recommended.

Objectives
The objectives of this module are to be able to:
list factors that might lead to futility situations
understand how to identify common factors
understand how to communicate and negotiate to resolve conflict directly
understand the steps involved in fair processes to resolve intractable conflict

There may be times in each physician’s career when a patient or surrogate decision maker asks for therapy that the physician does not think is
beneficial, or vice versa. Imagine a case involving a patient in a vegetative state, whose life is being supported mechanically, and whose
family insists that “everything be done.” How should physicians approach this type of situation? How might the physician better understand
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the reasons for the family’s seemingly irrational request? Are there techniques that are useful for ensuring that both parties feel they have
been supported and understood? In those rare instances where a mutually acceptable resolution is not possible, how should the physician
balance his or her own concerns with those of the patient and family, and those of the health care system? Ultimately, what is the physician’s
responsibility in providing futile care?

These cases tend to be frustrating and distressing. The health care team may feel that the family is being unreasonable, wasting scarce
economic resources, and causing the patient to undergo increased pain and suffering prior to his/her ultimate demise. Physicians may at times
respond by distancing themselves from the family, accusing family members of ulterior motives, or arguing that nonprofessionals should not
be allowed to make “medical decisions.” Meanwhile, the patient and/or family, already stressed by the realities of life-threatening illness,
may feel isolated, misunderstood, or abandoned. Family members may react by suggesting that the health care team does not “care” about
their loved one, or even by imputing financial, racial, or other prejudices to the team.

This module offers practical suggestions for preventing, minimizing, and resolving conflicts between patients and physicians before
relationships deteriorate to the point of irreparable damage. The module will not attempt to solve the debate about what constitutes medical
futility. However, it will provide a rational framework to use when there is conflict about medical decisions.

Physicians and Futility

This module will focus principally on the issues that arise when families want care that the physician and other professionals feel is futile.
Less commonly acknowledged, but of equal importance, are those situations where the physician or other professional persists in
recommending therapy that the patient or family does not think is beneficial, or where evidence dose not support any benefit to the patient.
This inclination to intervene may be out of a sense of needing to maintain hope, a personal belief that it is the professional’s job to maintain
life at all costs, or a need to avoid feeling failure or shame for not helping the patient. Physicians and caregivers, as well as patients and
families, may need to feel that “everything possible” was done so that, after the death, they will feel no regret or guilt.
A fundamental question to ask is “Who are we doing this for?” The physician should be particularly careful to center care around the
patient’s values. After all, the patient’s life and body are in question. Differences should be resolved in a manner that avoids showing
disrespect for the professionals’ expertise and knowledge yet fully respects the centrality of the patient.

Definitions of Futility
Many definitions of medical futility have been proposed, based on a range of possible approaches. One definition proposes that futility exists
when the treatment won’t achieve the patient’s intended goal. Others have defined a futile treatment as one that does not serve a legitimate
goal of medical practice. Some have advocated for a precise definition, suggesting that a treatment is futile when it is ineffective more than
99% of the time. Still others have indicated that treatment outside accepted community standards could be construed as futile.
In the majority of situations in which death is imminent, consensus is reached and life-sustaining interventions are not provided. Investigators
in one large study found that less than 1% of patients whose prognosis for survival was less than 1% on their third hospital day who did not
have a do-not-resuscitate (DNR) order in the medical record.
Most situations that arise are not straightforward issues of futility. Rather, they represent conflict about the relative value of treatments.
Examples of medical interventions in which questions of relative value may be raised include:
life-sustaining interventions for patients in a persistent vegetative state
resuscitation efforts for the life-threateningly ill
use of chemotherapy in patients with far advanced cancer
use of antibiotics or artificial hydration for patients who are in advanced stages of the illness

Is this really a futility case?

Unequivocal cases of truly futile interventions are rare. A clear example would be an attempt to resuscitate a patient who is decapitated. In
this situation, CPR would be futile according to all conceivable definitions.
More commonly, the concept of medical futility is invoked when there is a conflict over treatment and it is not clear how to reach resolution.
In order to avoid conflict, some have argued that physicians should neither offer nor provide therapy that is unlikely to work, or will only
result in a poor quality of life. To do otherwise, they believe, would be to violate professional integrity, offer false hope to patients and
families, and inflict harm on patients without the possibility of benefit. Others would disagree, wondering why, in cases of disagreement, the
physician’s values should override patient and family values, especially when those values are religiously based. Many would point out the
difficulty in differentiating “futile” therapy from “low-yield” therapy. Consequently, an increasing number of groups recommend defining
futility on a case-by-case basis. Approaches are based on the need to find a fair process of resolution rather than a final definition of what is
futile.

Conflict over treatment

Unresolved conflicts about treatment goals and specific therapies lead to increased misery for the patient, family, and health care
professional. Yet, most conflicts about care can be resolved through a process of effective communication and discussion. It is part of the
physician’s role to try to understand and resolve any differences in perception about treatment. This responsibility can be challenging because
it calls on important skills involving communication, compassion, and empathy. In negotiating issues of perceived futility, it remains the
physician’s obligation to support the patient and family and try to relieve their suffering. The physician can use the principles for decision
making based on informed consent, as well as prior advance care planning and the identified goals of care, to help achieve resolution.
Most disagreements about futile care are actually the result of misunderstandings or lack of attention to the family’s or care team’s emotional
reaction to the patient’s dying. Thus, the critical issue is to understand why there is disagreement. Typically, the conflict can be resolved in a
manner that is respectful of the point of view of both the physician and the patient/family. Moreover, by concentrating on understanding
points of view, one often can initiate interventions that help with bereavement.

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Differential diagnosis of futility situations
Approaching issues of futility from the point of view of resolving conflict will likely lead to resolution in the majority of cases. Among cases
in which futility is claimed, most can be attributed to a problem in surrogate authority, a misunderstanding, or personal factors.
Occasionally, there is a genuine value conflict, over either goals or the worth of a treatment.

Surrogate Selection
If the patient lacks capacity, the physician must rely on a surrogate. The surrogate should be the person whom the patient prefers. Look for
documentation of advance directives— either statutory or advisory. In the absence of an advance directive, some states have legislation
laying out a hierarchy for surrogate decision makers. In cases of conflict, one may need to have a guardian named. It is useful to know the
statutes under which you work. Blood relationship does not necessarily ensure the best surrogate. The following questions may help in
finding who is the right surrogate: Has the patient stated a preference for the person he or she would want as a surrogate if the patient should
become incompetent? Who is most likely to know what the patient would have wanted? Who is most likely to try to make a decision that
reflects the patient’s best interest? Does the surrogate have the cognitive ability to make decisions?
A rare but sometimes necessary question is, “Is the surrogate acting appropriately in the patient’s interests?” If the physician believes that the
surrogate is not doing so, it may be necessary to secure a different proxy. This usually involves going to court to appoint a guardian.

Misunderstanding of diagnosis or prognosis

Misunderstandings have a number of common causes. The physician should know how to assess and respond to misunderstandings.
Conflict may arise primarily because of misunderstanding on the part of the patient, the patient’s parents, or surrogate about diagnosis or
prognosis. There are many sources of misunderstanding. For example, no one may have actually informed the parents or surrogate of the
diagnosis or prognosis. Alternatively, the language used to inform the surrogate may not have been understandable. Including too much
jargon and using a vocabulary that only has meaning to other health care professionals is common. Other health care professionals may have
given the surrogate different or conflicting information.
Health care professionals may have “hedged” regarding the patient’s prognosis in the interests of not wanting to sound too pessimistic. In
addition, the stressful environment, sleep deprivation, and emotional distress surrounding the situation may lead to a decrease in
understanding. Finally, the patient, family, or surrogate may not be psychologically prepared to hear the bad news (“denial”) or may lack the
cognitive ability to understand the information. This is especially true when the dying patient is a child.

Misunderstanding: underlying causes

A frequent source of misunderstanding is the interpretation of the phrase “do everything.”
In medical jargon, it is frequently used to connote maximal medical attempts to save or prolong life, whether or not it is expected to be of
benefit. Mistaken notions of legal requirements sometimes propel such use. In contrast, families may use the same phrase to communicate
that they don’t want their loved one to be abandoned or to die.

Misunderstanding: how to assess

In order to assess misunderstanding, the physician must carefully listen to the patient’s and family’s or surrogate’s view of things. Use good
communication skills. Get the setting right in order to have the discussion with the surrogate. Ask open-ended questions like:
What do you understand about what is going on?
Tell me what you know so far about the situation for your child.
What’s your understanding of your mother’s condition?
What do you have in mind when you think about ‘doing everything’?
What do you expect to happen if we ‘do everything’?
Be sure to have a clear idea of what the surrogate (or patient, if competent) thinks of the situation before you begin to give information.

Misunderstanding: how to respond

Try to minimize the chaos caused by multiple caregivers and too much information.
Choose one health care professional to serve as primary communicator. Give information in small pieces and check for understanding
frequently. Information can be given in multiple formats, both written and verbal. Be sure to use language that is appropriate to the
educational level. You will need to provide adequate time for the discussions, knowing that frequent repetition may be required. Avoid the
tendency to “hedge,” rationalizing that it may preserve hope. Unclear and vague communication only promotes misunderstanding.
Encourage the decision maker to write down questions. Provide support. Above all, attend to the surrogate’s (or parents’) emotional state.
Remember that denial is a normal psychological defense mechanism. It may be very helpful to involve other health care professionals. In the
case of a dying child, it is imperative to also care for the patient’s siblings.

Personal factors
There are multiple ways in which interpersonal issues can manifest themselves as a conflict over futility.

Distrust
Patients and families may make comments that suggest they do not trust the information they are being given. Because they may be trying to
be polite and respectful, the clues may be subtle rather than overt. Comments about how other physicians were wrong, the previous hospital
wasn’t very good, the patient’s previous physician was only interested in money, the nurses never answered the call lights or administered the
wrong treatments, racial or ethnic prejudice was suspected, etc, should trigger the question: “Do they distrust us?”
It is often helpful to address this gently, but directly. Questions like the following might be helpful:
What you’ve been through makes me wonder if it is hard for you to trust medical people now.
From what you’ve said, I can imagine it might be difficult for you to trust us.

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Once established, it is then useful to explore the dimensions of the distrust. Ask patients and families to describe their issues fully. The
process of active listening and eliciting concerns may go a long way to establishing trust. Give the clear message that the physician and team
are interested and willing to hear about negative feelings, in order to facilitate repair of any problem and the building of trust.
After establishing that distrust is an issue, and after learning about its dimensions, the physician may pursue other avenues to strengthen trust.
Emphasize what is being done for the patient. Offer to facilitate a second opinion or find other individuals whom the patient and family are
more likely to trust. Make it clear that everyone wants the best care for the patient, and you want to work together with them to achieve that.
Affirm that you want to share accurate and complete information based on mutual trust and respect.

Grief
Grief is a natural human response to loss. Conflict with the physician and the health care team over issues of futility may be an extension of
anticipatory grief that is overwhelming.
Comments like, “I can’t live without him,” or “What will I do when she dies?” are markers of overwhelming grief.
The physician and other members of the health care team can help the patient with grief.
Social work, chaplaincy, nursing, and other disciplines can help the physician offer support.
In making decisions, help the family distinguish between what the patient would want and what the family wants in response to their grief.

Guilt
A powerful motivator for human behavior is guilt. Guilt over relationship issues with the dying patient is often subtly present in decision-
making discussions between physicians and patients/families. The archetypal, not-so-subtle situation is the arrival of the long estranged or
distanced relative at the bedside saying, “You must do everything; you can’t let her die.”
Eliciting this dimension requires skillful interviewing and the willingness to assess the situation using a broad perspective. It may help to
include in this assessment the contributions and information gathered by other members of the team, such as nurses, social workers, and
chaplains. Because guilt is sometimes associated with a sense of shame, families may not readily reveal this dimension to the physician
whom they do not know well, may respect, and may fear. Consequently, the guilt may provoke conflicts about futility determination.
Active listening may help modify the situation. Involvement of multiple team members over time is usually essential. Asking the family to
come to internal resolution and work through 1 spokesperson can sometimes contain the effects of guilt within the family, protecting
decisions for the patient. Negotiated time-limited trials may be helpful. Conflicted relationships are rarely resolved and resultant guilt is
rarely eliminated. However, it remains the task of the physician and health care team to develop an understanding of their dimension. That
understanding alone may illuminate behavior that previously seemed inexplicable.

Intrafamily issues
Health care decisions about a patient may be influenced by family dynamics. These conflicts may not be initially apparent to the physician,
particularly if the physician does not see the entire family as a group. Evidence of disagreement within the family, in the context of conflicts
over futility, may indicate intrafamily issues.
Social workers, who are trained in interviewing and in family systems, can be exceedingly helpful in both elucidating and managing
intrafamily issues. A family meeting, where all parties get together to hear information and make decisions, can be an excellent way in which
to both acknowledge intrafamily issues and come to a decision with which all can live.

Secondary gain
Occasionally, discussions regarding futility may be influenced by other implications of a patient’s death. For example, income to the family
or surrogate decision maker may be lost when the patient dies. The patient’s death may also influence where the family member may live, or
whether he/she will have access to savings or social status. Conversely, the decision maker may stand to benefit with the patient’s death.
Physicians may be unaware of this dimension. Assessment by social workers may be very helpful in figuring out the social framework in
which decisions are being made. Most often, resolution can be reached though sensitive discussions. However, ethics or legal consultation
may be needed, particularly if it is apparent that the decision maker is not acting in the best interests of the patient.

Physician/nurse
Physicians and nurses bring their own personal feelings about dying and about the benefits and burdens of specific interventions to the case.
Some push for interventions because of their belief that death is worse than any other state. Others push because they feel it is a failure in
their care if they were to do otherwise. Still others have strong personal desires to avoid aggressive intervention and project this on the patient
and family.

People may differ over values in health care. What is futile to one may be worthwhile to another. Genuine value conflicts, ie, not based on
misunderstandings, are typically of 2 types:
1. Parties differ over goals. For example, one party wishes to preserve life “at all costs” while the other party concludes that preserving life
is not a worthwhile goal.
2. Parties differ over benefit. For example, one party wishes to pursue a therapy that is highly unlikely to achieve the agreed upon goal (ie, a
“miracle”) while the other party does not believe the chances of success are high enough to continue treatment.
Whichever the type of conflict, it may be important to explore the root of the value difference.

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Difference in values
Some requests for therapies that others characterize as ineffective or futile are genuinely a reflection of differing values between the
physician or system and the patient/family.

Religious beliefs
Many people have a firm religious foundation for their lives and the decisions they make.
This may extend to decisions about medical treatments and life-sustaining therapies.
Families may make religious references in relating their point of view.
It is useful to explore the religious dimension that patients or families use in decision making. Physicians may need to overcome the social
convention of avoiding religious topics in order to have this discussion. Relying on chaplains, perhaps the family’s own, to help discuss and
elucidate the patient’s or family’s religious framework can be helpful.
An indication that the patient and family may rely on religious fatalism in facing serious illness is the phrase, “It’s in the Lord’s hands,” in
response to questions about preference and decision making. In such circumstances you may need more information on preferences.
It is sometimes helpful to say something like, “What you say is important, and it helps me to understand how you feel about things. Can you
help me to further understand what decisions would respect your belief about being in the Lord’s hands? For instance, if you were to be in ...
[describe situation] would you feel I had decided right if I were to
... [describe situation]?”
Physicians need to know their own disposition and must work to avoid imposing their views on the patient and family. Decisions that go
against a physician’s values should be avoided whenever possible by arranging for transfer ahead of time.

Miracles
Patients and families may express a belief in miracles. This may have a formal religious connotation or it may be less formalized. It is an
expression of hope that a supernatural or paranormal force will intervene to change the course of events. Comments like, “Only
God determines when someone dies,” may be a clue.
Attending to concomitant emotion and grief is important. It may be helpful to discuss the situation in terms of what is in the physician’s
power to influence and what is not. Miracles are, by definition, rare and unpredictable. It may be helpful to express the same hope for a
miracle that the family has, but introduce the concept of planning for what should be done if there isn’t a miracle, so helping them hope for
the best but plan for the worst. It may also be appropriate to ask the patient or family if they have also considered that,
“God might be calling him/her and we are preventing that from occurring.” Such conversations need to be scrupulously attentive to accuracy
and appropriateness. The inclusion of a chaplain or religious counselor may be essential.

Value of life
When this type of conflict occurs, it may be expressed by comments such as “life is worth preserving at all costs,” or “physicians shouldn’t
play God.” This issue may or may not be religiously based. Some physicians have used this justification for continuing therapies that conflict
with patient and family wishes.
To help resolve this conflict, it may be helpful to focus on the patient’s point of view and the patient’s expression of prior wishes in advance
directives, either formally or informally.

Due process approach to futility situations

The foregoing discussion was meant to help the physician understand the nature of situations that may lead to conflict over medical treatment
between the physician and patient/family. It is also a framework for preventing and resolving conflict. This process often leads to obvious
and acceptable solutions. But this is not always so.

If conflict persists we suggest a process whereby that conflict might be resolved. Many institutions and communities have policies related to
the provision of futile care that employ a step-by-step process of communication and problem solving to help resolve differences between the
physician and the patient/family. This type of due process approach may include the following steps:
1. Attempt to negotiate an understanding between patient, surrogate, and physician about what constitutes futile care in advance of actual
conflict. This step can preempt conflict.
2. To the maximum extent possible, joint decision making should occur between the patient or surrogate and physician. Negotiate solutions to
disagreements, if they arise, in order to reach a resolution satisfactory to all parties.
3. If disagreements persist, suggest the participation of other consultants, colleagues, and/or a group, such as an institutional ethics
committee. These additional resources may provide a reasoned impartial assessment and evaluation of the conflict. The value of ethics
committees has been well described in the medical literature.
4. If the institutional review supports the patient’s position and the physician remains unpersuaded, transfer of care to another physician
within the institution may be arranged.
5. If the review supports the physician’s position and the patient/surrogate remains unpersuaded, transfer to another institution can be carried
out if both the transferring and receiving institutions agree. If transfer to a physician in another institution is not possible, the intervention
need not be offered. However, there needs to be a diligent search for this option.
6. This process does not solve the problem when no receiving institution can be found.
The issue of cost of medical care, both to patients and families as well as to the institution and the health care system, is implicit in many of
these steps.

Summary
Situations involving true medical futility are rare. More often than not, the question of futility comes up when there is distress with
consequent miscommunication and conflict.

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Sources of conflict may be identified as follows. The proxy may not be performing the role well. There may be misunderstandings over
prognosis. There may be personal factors such as distrust or guilt. Or there may be differences in values. For intractable difficulties a fair
process for conflict resolution is recommended. This process should include, if at all possible, prior discussion as to what constitutes futility,
joint decision making with the patient/proxy and other parties, involvement of a consultant and/or ethics committee, and transfer of care to
another physician or institution if necessary. Rarely, if no physician or institution can be found to provide the intervention, it may be
necessary to withdraw or withhold what the patient/proxy or family has requested.

Module 3.3
Withholding / Withdrawing Therapy
The withholding and withdrawing of life-sustaining therapies is ethical and medically appropriate in some circumstances. Physicians need to
develop facility with general aspects of the subject, as well as specific skills and approaches. In this module, general aspects are discussed
first. Then, 3 areas where this general knowledge frequently needs to be applied are covered: cessation of artificial nutrition/hydration,
ventilator withdrawal, and resuscitation.

Objectives
The objectives of this module are to:
know the principles for withholding or withdrawing therapy
apply these principles to the withholding or withdrawal of:
- artificial feeding, hydration
- ventilation
- cardiopulmonary resuscitation

Introduction
Facilitating decision making and implementing decisions about life-sustaining treatments are essential skills for physicians. Impediments to
good care include misconceptions about legal and ethical issues, as well as unfamiliarity with the practical aspects of implementation.
This module discusses approaches to determine and implement treatment preferences to withhold or withdraw therapy. First, general
principles and approaches are covered as they relate to this subject. Then, 3 specific therapies that many physicians discuss with patients are
covered in more detail: artificial nutrition or hydration, ventilatory withdrawal, and CPR.

Role of the Physician

The physician plays an essential role in defining and implementing the medical care plan, and providing continuity of care as the goals evolve
and change over time. The physician often takes the lead in initiating discussions about life-sustaining treatment, educating patients and
families, helping them deliberate, and making recommendations about the treatment plan. As part of this role, the physician is responsible for
ensuring that the patient’s wishes, and/or the parents’ wishes if the patient is a child, are documented and supported by the appropriate
medical orders. Advance directives may be in place and helpful, but may not necessarily make clear how to translate general goals or
treatment preferences into treatment of the present medical conditions. Consequently, physicians should have the knowledge and skills
necessary for discussions, negotiations, and implementation of decisions related to life-sustaining treatments.
Often, institutional policies are written in response to the general legal imperative to, when in doubt, provide treatment to prolong life. If the
appropriate goals of care are other than “life at all costs,” then the physician needs to write orders that are specific enough to accomplish the
intended goals.
In general emergency medical services are required to provide all resuscitative and life-prolonging treatments unless a physician’s order is in
place to the contrary. The physician should ensure appropriate care, if the goals of care are other than the default mode. It is the physician’s
responsibility to ensure that the patient’s wishes (or parents’ if the patient is a child) are followed across care settings. Many patients undergo
some form of invasive medical treatment against their previously stated wishes.

Common concerns
There are several common concerns that impact decisions about life-sustaining treatments in general and withdrawal of ventilator support in
particular:
Are physicians legally required to provide all life-sustaining measures possible?
No. In contrast, patients have a right to refuse any medical treatment, even life sustaining treatments. There are few exceptions to this rule.
Mechanical ventilation and life-sustaining treatments are not exceptions.
Is withdrawal or withholding of treatment euthanasia?
After decades of discussion in society, there is strong general consensus that withdrawal or withholding of treatment is a decision/action that
allows the disease to progress on its natural course. It is not a decision/action actively to seek death and end life. In contrast to this,
euthanasia actively seeks to end the patient’s life.
Are you killing the patient when you remove the ventilator and treat the pain?
The intent and the sequence of actions are important, as are the means chosen. If the intent is to secure comfort, not death; if the medications
are chosen for (and titrated to) the patient’s symptoms as ventilator weaning proceeds; if the medications are not administered with the
primary intent to cause death, then ventilator withdrawal and pain treatment are not euthanasia. Usually, actions intended to provide comfort
and freedom from unwanted intervention result in a slower progression to death than do actions intended to euthanize.
Can the treatment of symptoms constitute euthanasia?
For patients who have been using opioids for pain, it is in fact very hard to give such high doses of opioids that death is caused (or even
hastened) in the absence of a disease process that is leading to imminent death, particularly if accepted dosing guidelines are adhered to.

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Patients tend to sleep off the effect if they get too much medication. However, for the rare circumstances when opioids might contribute to
death, provided the intent was genuinely to treat the symptoms, then opioid use is not euthanasia. Be careful to avoid the rationale that says,
“death is the treatment!” Symptom treatment alleviates symptoms; it does not intentionally cause death.
Is it illegal to prescribe large doses of opioids to relieve symptoms of pain, breathlessness, or other symptoms?
No. Even very large doses of opioids are both permitted and appropriate, if the intent and doses given are titrated to the patient’s needs.

Life sustaining treatments

There is a wide range of life-sustaining treatments that might be considered by an individual patient and family. These include CPR, elective
intubation and mechanical ventilation, surgery, dialysis, blood transfusions or blood products, artificial nutrition and hydration, diagnostic
tests, antibiotics, other medications and treatments, and future hospital or ICU admissions.
After determining the general goals of care, discuss each specific treatment with your patients and families, as appropriate. At a minimum, try
to discuss an invasive and a noninvasive intervention to get a general idea of a patient’s priorities for treatment.
Decisions about surgery and antibiotics are often strongly predictive of other invasive and noninvasive decisions, respectively.

Protocol to discuss treatment preferences

An 8-step protocol is suggested to guide the discussion of treatment preferences, particularly when considering withholding or withdrawing a
life-sustaining therapy:
1. Be familiar with policies and statutes
2. Appropriate setting for the discussion
3. Ask the patient and family what they understand
4. Discuss the general goals of care
5. Establish context for the discussion
6. Discuss specific treatment preferences
7. Respond to emotions
8. Establish and implement the plan

Reasonable physicians may disagree about the extent to which specific treatment preferences ought to be discussed, if such treatment will not
help achieve the overall goals. As a rule, the discussion of general goals of care should precede the discussion of specific treatment
preferences.
The physician usually conducts discussions of treatment preferences. Other appropriate members of the health care team may enhance the
discussion and prevent subsequent conflict within the team. They will have additional time to carry on the dialogue with the patient and
family. The team will also be able to provide valuable emotional support to the patient, family, and each other.
Even though other members of the health care team participate and/or conduct the discussion, implementation of any decision requires a
physician’s order. The attending physician must sign the documentation and assume full responsibility for its accuracy.

Step 1. Become familiar with pertinent policies and statutes

Physicians must familiarize themselves with the policies of the institution and pertinent laws where they practice. Unfortunately, many
physicians presume that, because their hospital has a specific policy (eg, all patients will have CPR unless otherwise ordered) this practice
reflects the law. Most countries leave specific treatment decisions to be decided between patient and physician. Each institution will have its
own policies, and may have developed standard forms regarding life sustaining treatment.

Step 2 and 3. Establish the appropriate setting. Ask what the patient/ family understands.
Establish the appropriate setting. Ask what the patient, family, or surrogate understands about the current health situation, and would like to
know, before imparting new information.

Step 4. Determine/reconfirm goals of care

Determine or reconfirm the general goals of care. Examples are, “Can we review our overall goals for your care?” or, “Let me tell you what I
understand you want as we plan your care.” Once the general goals of care have been confirmed, specific life-sustaining treatment
preferences can be discussed.

Step 5. Establish the context of the discussion

Be sure to establish the context in which or for which treatment planning is being discussed.
The classic misstatement on the part of well-meaning physicians is, “Do you want us to do everything?” This highly misleading question fails
to acknowledge context. When are we talking about? Today, when the patient is quite healthy, or at the very end of his or her life when
facing death? “Everything” is much too broad and is easily misinterpreted by families, especially when they feel “everything” has not, in fact,
been done.

Step 6. Discuss specific treatment preferences

Discuss specific treatment preferences. Use language that the patient will understand. Use a translator if necessary. Give information in small
pieces. Reinforce the context in which the decisions will apply. Stop frequently to check for reactions, to ask for questions, and to clarify
misunderstandings.

Step 7. Respond to emotions

During these discussions, respond to patient and family anxiety, and acknowledge emotional content. Parents, if the patient is a child, are
likely to be very emotional and need support from the physician and other members of the health care team. Patients, families, and surrogates

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may be profoundly disturbed by the subject matter being discussed. If a physician finds that emotions are too challenging, ask other
colleagues and/or members of the health care team to assist.

Step 8. Establish a plan. Document and disseminate the plan

Establish and implement a plan that is well articulated and understood. This may be as simple as planning to discuss the subject again at the
next visit, or convening a family meeting to further discuss the proposed treatment plan. Or it may be more complex, such as organizing
nursing, social work, and chaplaincy intervention, or notifying a key family member living out of town is notified.
Discuss treatment plans with other health care professionals so that the plans may be carried out in a straightforward and organized fashion.
In health care institutions, this involves discussing the plan with nursing and house staff, at a minimum. Write the appropriate orders,
document the discussion in the medical record, and talk about the plan with other members of the health care team.

Aspects of informed consent

Informed consent is a fundamental ethical principle that underlies contemporary medical care. Patients, and parents if the patient is a child,
deserve a clear, complete understanding of all therapies that are being proposed for them. Some will want to know all the details. Others will
prefer not to know anything.
Be prepared to describe in simple, neutral terms the aspects of each life-sustaining treatment in a manner that conforms to the principles of
informed consent:
the problem that the treatment would address
what is involved in the treatment or procedure
what is likely to happen if the patient decides not to have the treatment
the benefits of the treatment
the burden created by the treatment

Application of the protocol

Three common examples of the application of the protocol to discuss the withholding or withdrawing of therapy follow.

Example 1: Artificial feeding and hydration

Physicians frequently perceive the discussion about whether or not to use or continue artificial feeding and/or hydration to be difficult.
Successful approaches are not customarily taught and demonstrated during medical training. Food and water are widely held symbols of
caring, so withholding of artificial nutrition and hydration may be easily misperceived as neglect by the patient, family, or other professional
and volunteer caregivers. The following are key points, in addition to the general approaches described above:

Review the goals of care

First, establish the overall goals of care. Talk about the general medical condition. Evaluate the ability of artificial hydration and nutrition to
help achieve those goals, before discussing specifics. For example, if the patient has advanced cancer, establish an understanding of the
overall situation. What is the expected course of the cancer? Is anything reversible? Second, how will artificial hydration and nutrition
contribute to the overall goals of care, or improve the situation? If the patient and family hope to see improved energy, weight, and strength,
then artificial fluid and nutrition may not help accomplish those goals in far-advanced cancer. Help the patient and family to understand the
goals for which artificial nutrition and hydration would be appropriate.

Address misperceptions
During the discussion, listen for misperceptions expressed by patients and families.
They may believe that lack of appetite and diminished oral intake is the main cause of the patient’s disability and fatigue. They may believe
that if only the patient got more fluids and nutrition, he or she would be stronger. Use clear, simple language to help them focus on the true
causes of the situation: eg, “The cancer is taking all of your strength” or, “The fact that your heart is so weak is what is causing you to lose
your appetite and feel so fatigued.”
If the patient is close to dying, make sure the family knows that a dry mouth may not improve with intravenous fluids. Relief is much more
likely with attention to mouth care and oral lubricants.
In some patients, delirium may be related to dehydration, so a clinical trial of intravenous fluids may be warranted. However, before starting,
ensure that everyone is aware that there are other causes of delirium that may not respond to fluids, and there is a risk that fluids will only
increase other physical symptoms (eg, edema, breathlessness) without relieving the delirium.
Urine output normally declines in the patient who is dying; it is not just an indicator of hydration. Both high-volume infusions and excessive
urination may be a source of discomfort to the patient.

Help family with their need to give care

As part of the discussion, identify the emotional need that providing food and water meets, particularly for families. Don’t just address issues
of artificial hydration and nutrition.
Help the family find ways to redirect their desire to be caring, and teach them the skills they need to be effective.

Normal Dying
Loss of appetite and diminished fluid intake are a part of normal dying. Trying to counteract the natural trends may lead to more discomfort
for the family without affecting the outcome.
Near the end of life, patients usually do not suffer from thirst or hunger if the patient is not taking any fluids or nutrition. Help the patient and
family to understand that dehydration is a natural part of the dying process. It does not affect the dying patient in the same way as a healthy
person who feels thirsty on a hot day or becomes dizzy on standing.

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Let family members know that if the patient is not hungry, artificial fluids and hydration will not help him or her feel better. Forcing the
patient to eat or drink more will only increase tensions and may cause the patient to become angry, depressed, or withdrawn, if he or she
cannot comply.
Let family members know that artificial fluids and nutrition may make edema, ascites, pulmonary and other secretions, and dyspnea worse,
particularly if there is significant hypoalbuminemia.
Ensure that family and caregivers know that a state of dehydration in a patient who is bed-bound and imminently dying may have some
benefits. Pulmonary secretions, vomiting, and urinary incontinence may be less. Dehydration may actually stimulate the production of
endorphins and other anesthetic compounds that help to contribute to a peaceful, comfortable death for many patients.

Example 2: Ventilator Withdrawal

The withdrawal of ventilator support from a patient is one of the most challenging situations for patients, families, and their caregivers, and
members of the health care team.
The purpose of this section is to describe an approach (based on the literature and expert opinion) that can guide the physician through such
an encounter. While there are no tested protocols, if you are uncertain, seek the assistance of experienced colleagues and other health care
professionals to help in the process.
In discussing whether to institute or withdraw artificial ventilation, follow the general outline for discussing life-sustaining treatments that
began this module. Assess whether removal from the ventilator is appropriate and desired (elements of that assessment are described in the
references). First, discuss the overall goals in light of the patient’s medical condition. Then, consider the role that artificial ventilation might
play in achieving those goals.

Techniques for ventilator withdrawal

If ventilator withdrawal seems appropriate to everyone involved, consider which of these two methods might be used:
1. Immediate extubation (removal of the endotracheal tube)
2. Terminal weaning
The clinician’s and patient’s comfort, and the family’s perceptions, should influence the choice of the method to use.

Immediate Extubation
In immediate extubation, the endotracheal tube is removed after appropriate suctioning.
Humidified air or oxygen is given to prevent the airway from drying.
This is an appropruate approach to relieve discomfort if the patient is conscious, the volume of secretions is low, and the airway is unlikely to
be compromised after extubation.
While most authorities regard immediate extubation as ethically sound practice, some may be concerned that it is a form of direct killing of
the patient. In such an action the intent becomes the primary concern. Secondary consequences can be dealt with, if they occur.

Terminal weaning
In terminal weaning, the ventilator rate, positive end-expiratory pressure (PEEP), and oxygen levels are decreased while the endotracheal
tube is left in place. Terminal weaning may be carried out over a period of as little as 30 to 60 minutes or longer. CO2 narcosis may stimulate
endorphin release and further sedate the patient. If the patient survives, a Briggs T-piece may be used in place of the ventilator, if the
endotracheal tube will be left in place. Alternately, patients may then be extubated.

Ensure patient comfort

When removing a patient from the ventilator, it is critical that the patient be comfortable throughout the procedure and afterwards. The most
important and prevalent symptoms are breathlessness and anxiety.

Prevent symptoms
Breathlessness
Opioids (such as morphine) are the most effective medication for relieving the sense of breathlessness. They work through both central and
peripheral mechanisms of action. The principle of intended vs unintended consequences governs their use in this setting.
Concerns about unintended secondary effects, such as shortened life, are exaggerated, particularly if established dosing guidelines are
followed. Titate the dose with the intent to achieve comfort. Increased doses beyond the levels needed to achieve comfort or sedation in order
to hasten death would constitute euthanasia. Oxygen is helpful to correct hypoxemia, but not necessarily breathlessness.

Anxiety
Benzodiazepines such as midazolam, lorazepam, and others are the most effective anxiolytic drugs in this setting. They are usually used in
combination with opioids for severe breathlessness. Opioids only have transient and unreliable anxiolytic effects in opioid naïve patients and
should not be used for this purpose.

Preparing for ventilator withdrawal

If the patient is conscious, determine if he or she would like to remain conscious as the ventilator is withdrawn. This will determine the
endpoints for initial medication and guide the use of additional medication during the procedure. If the patient wishes to remain awake,
institute opioids and benzodiazepines at low doses. Make plans to intervene if severe breathlessness or discomfort ensues after extubation.
Determine, with the patient and family, how and when you would decide to titrate to an endpoint of sedation.
In planning for discontinuation, a skilled clinician must assess and reevaluate the patient’s choice and situation. Anticipate potential
discomfort and institute appropriate medical and nonmedical measures in advance to prevent these symptoms from occurring.
Have medication immediately available at the bedside so that it can be rapidly titrated to the level appropriate to ensure the patient’s comfort.

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Before withdrawing the ventilator, ensure that the patient is comfortable. If the patient is naive to opioids and benzodiazepines, start by
giving the patient a bolus dose of 2 to 5 mg of morphine IV to prevent breathlessness. Follow this initial dose with repeat boluses or a
continuous morphine infusion at 50% of bolus dose/h to maintain the desired effect. Also, bolus with a dose of 1 to 2 mg of midazolam IV
and follow with repeat boluses or begin a midazolam infusion at 1 mg/h. For children, dose the medications based on the child’s weight.
Titrate these medications to minimize anxiety and achieve the desired state of comfort and sedation. Lorazepam may be used as an
alternative. If these medications have been in use routinely and pharmacologic tolerance has developed, higher doses will be required.
There is no need to increase the doses once comfort and the desired level of sedation have been achieved.
If distress ensues once the ventilator is withdrawn, aggressive symptom control is needed. Consider using morphine, 5 mg IV push q 10-15
min, and/or midazolam, 2 mg IV push q 10-15 min, until distress is relieved. Adjust both infusion rates to maintain relief.

Note: The doses recommended here are for patients who were not previously taking anxiolytic medication or opioids.

Prepare the family

Ideally, the family will be involved in the decision to withdraw the ventilator. They will need to understand the procedure and be reassured
about their roles. Since there is uncertainty involved, it is also important for the physician to prepare the family for the range of outcomes that
might occur.
Never make assumptions about what the family understands. Describe the procedure in clear, simple terms and answer any questions. Assure
them that the patient’s comfort is of primary concern. Explain that breathlessness may occur, but that it can be managed. Confirm that you
will have medication available to manage any discomfort. Ensure they know that you may need to put the patient to sleep. Assure them that
involuntary moving or gasping does not reflect suffering if the patient is properly sedated or in a coma.
Explain how the family can show love and support through touch, wiping of the patient’s forehead, holding a hand and talking to him or her.
Ask the family what other concerns they have. Explain that there is always some uncertainty as to what will happen after the ventilator is
withdrawn. (Some patients die within several minutes, whereas others may live for longer periods.) Caution the family that, although death is
expected, it is not certain. Data show that approximately 10% of patients survive and are discharged from the hospital.

A sample protocol for ventilator withdrawal: immediate extubation, unconscious patient

This protocol demonstrates how care and planning can ensure that the process of withdrawing life support maintains the dignity of the
patient, and involves the family appropriately. The protocol presented is for immediate extubation, but it can be adapted for other uses.
Immediate extubation may be best reserved for unconscious patients. Key points are listed below.

Prior to withdrawal
In addition to fulfilling all the requirements of informed consent in a good decision-making process, there should be discussion and
agreement with the family when to proceed with discontinuing life support. In addition, nurses, respiratory therapists and all professional
staff on the unit should understand this development, and have the opportunity to discuss the plan of care. Encourage family to make
arrangements for special rituals that may be important to them. If the patient is a child, ask parents if they would like to hold the child as he
or she dies. Make arrangements for young siblings to have their own support if they are to be present.
Document issues, clinical findings, and care plan on the patient’s chart.

Withdrawal protocol- part 1

The physician should personally supervise that all monitors and alarms when possible in the room are turned off. All restraints should then be
removed. Clear a space for family access to the bedside. Before the family comes into the room, remove NG tube and any other needlessly
disfiguring or unnecessary device that may be crowding the bedside. At this point, invite the family into the room to be with the patient. If the
patient is an infant or young child, offer to have the parent hold the child. Maintain intravenous access for administration of palliative
medications.

Withdrawal protocol–part 2
Establish adequate symptom control prior to extubation as described above. As the family has been told that tachypnea or periodic breathing
can occur, but will be managed, the physician should have a syringe of a sedating medication such as midazolam, lorazepam, or diazepam in
hand, to use in case distressing tachypnea or other symptoms occur.
Once initial symptom control has been established, set the FiO2 on the ventilator to 21%, and observe the patient for signs of respiratory
distress. Adjust opioids and benzodiazepines to relieve distress before proceeding further. If a patient is likely to develop CO2 narcosis with a
decrease in ventilator settings, there may be less need for sedating medications.
If the patient appears comfortable, prepare to remove the endotracheal tube. Try a few moments of “no assist” before the endotracheal tube is
removed.
When ready to proceed, first deflate the endotrachial (ET) tube cuff. If possible, someone should be assigned to silence, turn off the
ventilator, and move it out of the way. Once the cuff is deflated, remove the ET tube under a clean towel which collects most of the
secretions and keep the ET tube covered with the towel. If oropharyngeal secretions are excessive, suction them away.

Withdrawal protocol–part 3
The family can now come forward to a loved one whose face is no longer encumbered by medical devices. A nurse should be stationed at the
opposite side of the bed with a washcloth and oral suction catheter. The family and the nurse should have tissues for extra secretions, and for
tears. The family should be encouraged to hold the patient’s hand and provide assurances to their loved one.
After the patient dies, there is no need to rush anyone. Encourage the family to spend as much time at the bedside as they require. Provide
acute grief support. Offer follow-up and begin bereavement support.

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Example 3: Cardiopulmonary resuscitation
Many physicians perceive the discussion about whether or not to use CPR to be difficult.
This may be due, in part, to the fact that successful approaches are not customarily demonstrated during medical training. Often, the attending
physician conducted such discussions alone, behind closed doors. Sometimes, these discussions were assigned to a lone medical student or
resident to do after rounds.
It is worth reflecting on the language that has developed around CPR and DNR status, particularly in hospitals. Getting the DNR order is an
important goal for physicians. “Is he or she a DNR?” has become shorthand for the more pertinent question, “What are the goals of care?”
Too frequently, a DNR order is interpreted to imply a whole host of other decisions that, in fact, may or may not have been made about an
individual patient.
The focus of this section is to place specific decisions about medical treatment into the context of whole-person care and respect for the
individual. DNR status should never be addressed in isolation. The phrases, “She is a DNR” and, “He is a full code” betray the inappropriate
way in which decisions about resuscitation are sometimes treated in contemporary medical care.
One impetus to the current state of affairs is the emotional subtext related to “doing everything” for someone who is loved. It should be
expected that everyone involved— patient, family, physician, health care team—wants to do everything possible to achieve the health and
well-being of the patient. Cardiopulmonary resuscitation is but one medical treatment that may or may not help to achieve realistic goals
related to the care of the patient.
It is helpful to first identify the goals of care. It is the physician’s role to facilitate the identification of those goals, and then help to determine
the medical care that will best achieve them.
Then, in the setting of advanced progressive illness where the prognosis is limited, consider carefully whether CPR will help achieve the
goals that the patient, the family, and the physician have collectively determined. Using this approach, the discussion of
CPR and DNR status become deemphasized to the point that they almost disappear as important parts of the discussion.

Discussing DNR status

Establishing DNR status is but one example of advance care planning. When undertaking to establish DNR status, the physician may want to
consider a range of scenarios, not just the one that appears to be the most pressing. This may also give the discussion a greater sense of
proportion.
Start by establishing or reaffirming an understanding about the patient’s values and goals of care.
Before discussing a DNR order, confirm the patient’s (or parents’ if the patient is a young child) understanding about the overall medical
condition, and the context in which you are discussing the use of CPR. Engaging in a discussion that focuses only on CPR and
DNR status may leave the patient and family confused and anxious, imagining the precipice toward which the patient is speeding.
During the discussion, use language that is understandable, such as, “If you should die in spite of our current therapy, do you want us to use
‘heroic measures’? To do CPR? To press on your chest and put a tube in your lungs to try to get your heart and breathing started again?” To a
layman, when the heart and/or lungs stop, the patient dies. It may be helpful to use the word “death” to clarify that CPR is a treatment that
tries to temporarily stop death from occurring. If the patient and family want more information, move to specific descriptions of what is
involved with CPR after the more general question is answered.
The convention of initially discussing CPR as “starting the heart” or “putting on a breathing machine” implies a false sense of reversibility, or
suggests those heart and lung functions are isolated problems. Avoid implying that the impossible is possible. In discussing
DNR status with a patient with a life-threatening illness, avoid introducing CPR as “shocking the heart if it stops, using a breathing machine
if the lungs stop.” This reductionist approach fails to acknowledge the context in which CPR would be administered—to a patient who is
dying of a disease. In the setting of advanced illness, circulation and breathing stop because of the relentless progression of the disease. If
there were something to reverse, the medical team would do so long before the patient stopped breathing.
Further, avoid describing CPR as “doing everything.” It implies that not doing CPR is “doing nothing.” The issue of abandonment is implicit
in discussions of CPR and DNR.
As part of the discussion, ask about other life-prolonging therapies. Put the discussion of resuscitation into the context of the host of life-
prolonging therapies that need to be decided upon, including elective intubation and mechanical ventilation, dialysis, surgery, antibiotics,
artificial fluids, etc. Consider describing various scenarios and eliciting the patient’s preferences. Avoid “getting the DNR” and leaving the
patient.
Before ending the discussion, affirm what you will be doing for the patient. Confirm the active interventions that are or will be done for the
patient. For many patients, full medical interventions to reverse disease and sustain life are appropriate even with a DNR order in place.
However, if the patient dies in spite of all efforts, resuscitation will not be attempted.
So-called “slow codes” or “chemical-only” codes are unacceptable approaches to the issue of whether or not to offer emergency attempts to
restore airway, breathing, and circulation.
Their use promotes cynical approaches to decision making and hypocritical interactions between physicians and patients.

Write appropriate medical orders

DNR order
CPR involves the establishment of a patent airway, effective breathing, and cardiac output through assisted ventilation and external cardiac
massage. If this is not appropriate or desired by the patient, the physician should write a DNR order. A DNR order does not address any
aspect of care other than preventing the use of CPR. Some institutions prefer a do not attempt resuscitation (DNAR) to avoid the implication
of success that DNR connotes.

DNI order
A do not intubate (DNI) order is sometimes used for patients who do not ever want a ventilator used, even if the machine could save their
lives. For example, patients with chronic or progressive lung diseases may choose an isolated DNI order. Patients who choose to have a DNR
order have implied a DNI order, as CPR requires the establishment of airway, breathing, and circulation.

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Do-not-transfer order
Some long-term care institutions may permit a “do-not-transfer” order to indicate preferences not to be transferred to an acute hospital
setting, in the event of clinical decline.

Other orders
Include all positive orders that relate to symptom control and those that guide intensity of care. Some institutions have special forms to
facilitate communication and document orders.

Summary
Withholding and withdrawing therapy challenge physicians to be excellent communicators with patients and families. Working to help
patients and families achieve their goals and understand the limits of modern medical help can be rewarding when information and skills are
learned.

APPENDIX
Cases for role play

Artificial feeding and hydration

D.W. is an 82-year-old widowed retired secretary with advanced dementia. She is cared for in the home of her married daughter, who is her
power of attorney for health affairs. She requires assistance in all her domestic activities of bathing, feeding, toileting, ambulation, etc. She
spends most of the day in bed, or lying on the sofa. She speaks very little, and not very intelligibly. She has recently stopped eating almost
everything. She bites the spoon when it is brought to her mouth and/or pockets food in her cheeks without swallowing.
She was admitted to the hospital several months ago for the treatment of aspiration pneumonia. The possibility of a feeding tube has been
raised. You are discussing this with the daughter.

Resuscitation
K.E. is a 68-year-old truck driver with advanced esophageal cancer. Despite surgical resection and combination chemotherapy and
radiotherapy, the disease has progressed. Although he denies pain or breathlessness, he does indicate overall fatigue. He has lost 10 pounds
over the past month. Recent studies have demonstrated malignant pleural effusion and liver metastases. He knows these results. You are
seeing him in the office to discuss further care.

Information for patients and families

1. Artificial fluids and nutrition
When is artificial feeding and nutrition most appropriate?
if you have a temporary condition that prevents swallowing, artificial fluids and nutrition can be provided until you recover
What is involved in the procedure?
an intravenous catheter may be placed in a vein in the skin for fluids, or sometimes nutrition
alternately, a plastic tube called a nasogastric tube (NG tube) may be placed through the nose, down the throat, and into the stomach. It is
approximately 1/8 inch in diameter.
This can only be left temporarily
if feeding by this route, a more permanent feeding tube may be placed into the wall of the stomach (PEG tube or G tube)
What happens if it is not administered?
if a person is unable to take any food or fluids due to illness, he or she will eventually fall into a state much like a deep sleep. This process
will take 1 to 3 weeks
before entering the deep sleep, he or she will normally not experience any hunger or thirst after the first several days
for a person who has an advanced illness, giving artificial hydration and nutrition may not prolong life
What are the benefits?
a feeding tube may reduce hunger in someone who is hungry, but cannot swallow
intravenous fluids may reduce some symptoms, such as delirium
What are the burdens?
all feeding tubes are associated with significant risk. Around 30% of patients have signs of the liquid entering the lungs. This aspiration of
fluid can cause coughing and pneumonia
feeding tubes may feel uncomfortable. They can block the stomach, causing pain, nausea, and vomiting
tubes for food and fluids may become infected
physical restraints are occasionally needed so the patient won’t remove the tube

2. Artificial ventilation
When is artificial ventilation best used?
if you have a temporary condition that prevents adequate breathing, a breathing machine can be used until you recover
What is involved in the procedure?
a tube is placed through the mouth or nose into the lung and is connected to a breathing machine
What happens if it is not administered?
if a patient is unable to breathe, the patient may die

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What are the benefits?
the breathing machine allows the body time to recover
it prolongs life
What are the burdens?
the breathing tube is uncomfortable. Most patients require medicine to keep them comfortable while they are on the breathing machine
it may prolong a state of dependence in a medical setting that the patient finds not worth the discomfort
it may prolong dying

3. Cardiopulmonary resuscitation (CPR)

When is CPR most important?
when the heart or lungs stop working unexpectedly (eg, after an accident or when you are walking down the street)
when there is a possibility that the underlying problem can be fixed
What is involved in the procedure?
involves vigorous pressing on the chest and electric stimulation to the chest
medications may be administered and a tube to assist breathing may be used
typically lasts for 15 to 30 minutes
What happens if it is not administered?
the loss of consciousness will be followed by death in 5 to 10 minutes
What are the benefits?
for a patient with an advanced life-threatening illness who is dying of the underlying disease, there is no benefit
for patients with good overall health status, younger age, and administered within 5 minutes of cardiac or respiratory arrest, it may permit
prolonged life
What are the burdens?
chest compressions could result in a sore chest, broken ribs, or a collapsed lung
most people who need CPR also need to be on a mechanical ventilator in an intensive care unit to support their breathing for a period of
time
fewer than 10% of all hospitalized patients survive CPR and return to their previous state (most of these people were already in a coronary
care unit when the procedure was done). Most patients live for a short period after CPR, but still die in the hospital
only 1% to 4% of patients with multiple chronic illnesses survive to leave the hospital
almost no one with cancer survives to leave the hospital
of those who survive, many continue to live in a weaker state, or with brain damage.
Half the people who survive are chronically dependent

Module 3.4
Physician Assisted Suicide
Most physicians have received one or more requests to help a patient end his or her life prematurely. This module focuses on the skills that
the physician can use to respond both compassionately and with confidence to a request physician-assisted suicide (PAS) or euthanasia. To
respond effectively, physicians must know the reasons why patients ask for assistance. Depression, psychosocial factors, and anticipated
distress are common reasons, but current physical suffering can also be a factor. Physicians need to be able to assess the root causes of the
specific request, make a commitment to the patient’s care, address each of the patient’s sources of suffering, educate the patient about legal
alternatives, and seek counsel from colleagues. The vast majority of requests for PAS or euthanasia should abate when approached in this
way.

Objectives
The objectives of this module are to:
 define physician-assisted suicide (PAS) and euthanasia
 describe their current status in the law
 identify root causes of suffering that prompt requests
 understand a 6-step protocol for responding to requests
 be able to meet most patients’ needs

Physician assisted suicide / Euthanasia

Suffering has always been a part of human existence. Requests to end suffering by means of death through both physician-assisted suicide
and euthanasia have occurred since the beginning of medicine. Many physicians practicing today have received a request for physician-
assisted suicide in some form or another.
While unrelieved physical suffering may have been greater in the past, modern medicine now has more knowledge and skills to relieve
suffering than ever before. Today, specialists in palliative care believe that if all patients had access to careful assessment and optimal
symptom control and supportive care, the suffering of most patients with life threatening illnesses could be reduced sufficiently to eliminate
their desire for hastened death. Even when the desire persists, avenues other than physician-assisted suicide or euthanasia are available to
remedy suffering and avoid prolonging life against the patient’s wish.

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This module presents an approach for responding to such requests, both compassionately and competently. The focus is not on the debate to
legalize PAS or euthanasia, but rather on the practical steps that a physician can take to assess the patient’s request, address the root causes
of the request, and ensure that the best quality of end-of-life care is practiced.

Why patients ask for physician assisted suicide?

Patients ask physicians about physician-assisted suicide (PAS) for a variety of reasons. It is a rare patient with a life-threatening illness who
doesn’t think about suicide, if only in passing. Some patients may approach the physician about PAS with the intent of “thinking out loud”
about their response to their present and anticipated future. Others may raise the question based on lifelong values. For some, a request for
PAS is sign of patient crisis where unmet needs have built up and result in this plea for help. For all patients, the request for PAS should
prompt the physician to assess the reasons for the request. Patients make requests for many different reasons that usually arise from physical,
psychological, social, or spiritual suffering, or practical concerns. For some patients, the request is the first expression of unrelieved
suffering.
Each person will have a unique set of needs and reasons why he or she would like to hasten death. While more research is needed, available
data support a few generalizations.
In all surveys, unrelieved psychosocial and mental suffering is the most common stimulus for requests. Fear of future suffering, loss of
control, indignity, or being a burden are also prominent reasons for requests.
Physical suffering, including pain, is a less frequent motivator than many think. Pain is one of several motivators in about half of requests,
and in the remaining half of requests pain was not cited as a factor at all . Nonetheless, the contribution of physical suffering is important. Its
anticipation is a common motivator and because it is treatable.

Ethical and Legal Debate

The debate about the legalization of active steps to intentionally end life as a means to end suffering remains controversial. Modern history
suggests that the topic comes up for intense attention periodically. Because of the added risk of misunderstanding or overriding the patient’s
wishes, there is currently less support for euthanasia than for physician assisted suicide. Nonetheless, both requests do occur and physicians
need to know how to respond to either type of request.
In any discussion of physician-assisted suicide or euthanasia, it is important that the terminology be clear. Euthanasia is defined as “the act of
bringing about the death of a hopelessly ill and suffering person in a relatively quick and painless way for reasons of mercy”. Although they
may have similar goals, physician-assisted suicide and euthanasia differ in whether or not the physician participates in the action that finally
ends life:

Physician-assisted suicide: The physician provides the necessary means or information and the patient performs the act.

Euthanasia: The physician performs the intervention.

As the current debate unfolds, there are 2 principles on which virtually all agree. First, physicians have an obligation to relieve pain and
suffering and to promote the dignity of dying patients in their care. Second, the principle of patient bodily integrity requires that physicians
respect patients’ competent decisions to forgo life-sustaining treatment.
In contrast to the PAS debate, the right to palliative care is uniformly acknowledged. Everyone has the right to receive quality palliative care
is a basic human right.

Professional competence
As most physicians are likely to receive a request for hastened death, every physician must be capable of dealing with these difficult requests
in a way that responds to the needs and expectations of the patient and offers the best possible care that is both ethical and legal.
The ability to respond to requests for hastened death with realistic alternatives requires a working knowledge of all aspects of palliative care.
The physician must follow usual standards for information giving, know how to provide aggressive symptom control and supportive care,
and be skilled at approaches to withdraw or withhold life-sustaining interventions
A physician will want to be aware of the ethical and legal issues.
As effective approaches for responding to suffering may be time consuming, physicians will be more effective if they work collaboratively
with other health care disciplines, ideally in an interdisciplinary team. As some requests for PAS or euthanasia can be intense, even for
physicians who are skilled and experienced, access to consultative palliative care expertise, both physicians and programs, as part of the
spectrum of contemporary health care is essential.

Protocol for responding to requests for physician assisted suicide or euthanasia

Any request for PAS should always be taken seriously. Response should be immediate and compassionate. Six steps can be identified for
responding to such requests:
1. Clarify the request
2. Assess the underlying causes of the request
3. Affirm your commitment to care for the patient
4. Address the root causes of the request
5. Educate the patient and discuss legal alternatives
6. Consult with colleagues
While each step will be discussed in this module in sequence, as with other clinical protocols, these steps should integrate smoothly and
flexibly into actual practice as issues arise. Depending on the particular case, while some steps may be implicit or accomplished in a few
words, others may be complex and require considerable time to respond.

Step 1: Clarify the request

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When a request for hastened death is first received, listen carefully to the nature of the request. Ask open-ended questions in a calm and
nonjudgmental manner to elicit specific information about the type of request that is being made and the underlying causes for it.
While some physicians fear that talking about suicide or hastened death will increase the likelihood that the patient will act, this fear has not
been substantiated. An open discussion is more likely to reduce the intensity of the request.
Once the underlying reasons are known, more directed questions can be asked. Several examples, and the common areas to which answers
may point, follow:
MD: “What makes you ask that?”
- desire for a pain-free death
- control over the dying process
MD: “What do you expect will happen without PAS?”
- understanding and expectations of the illness
- expectation of what dying will be like
MD: “What type of assistance do you want?”
- pills, injection
MD: “Who do you want to be involved? Why?”
- self, family member, physician
MD: “When do you think you want to die?”
- now
- at some later point
MD: “What do you hope to accomplish?”
- freedom from pain, disability, bankruptcy, dependency, indignity
- removing burden on others
The answer to the question, “When do you think you want to die?” will provide some indication of acuity. “What do you hope to
accomplish?” will provide some understanding of the patient’s reasoning and what he or she is hoping for. During the course of the
questioning, it is particularly important to learn whether the patient is imagining a future that is either unlikely or easily preventable.
As you listen to the answers, use the therapeutic effect of empathic listening. Avoid endorsing the request for PAS in a way that confirms the
patient’s perception that his or her life is worthless. Remember that empathizing is not the same thing as agreeing. Premature affirmation of
any perspective can propel both parties to stark choices.
Only when the patient’s point of view has been characterized will it be possible to talk about what suffering means to the patient and what
assurances can or cannot be given.

Personal biases
To respond effectively to the needs of the patient, the physician must be aware of his or her own biases and the potential for
countertransference. If the idea of suicide is offensive to the physician, the patient may feel his or her disapprobation and worry about
abandonment.
Conversely, if the physician feels it would be best for everyone if the patient were to die soon then the patient may sense this and become
more concerned about being an unwelcome burden.
Be open to the possibility that your personal reactions to the patient’s suffering may give insight into his or her experience. If the physician
feels weighed down by meeting with the patient, perhaps the patient is depressed.

Step 2: Assess the underlying causes of the request

A request for PAS may indicate a failure to address the full scope of a patient’s needs.
Focus on all 4 dimensions of physical, psychological, social, and spiritual suffering as well as practical concerns.
Among all the psychological and physical possibilities, give particular consideration to the possibility of clinical depression or anxiety, as
research indicates correlation between requests and their presence. When evaluating psychological and social issues, explore the patient’s
fears about his or her future.

Assess for clinical depression

Clinical depression occurs frequently and is both underdiagnosed and undertreated. It can be a source of intense mental suffering and a
barrier to completing life closure and achieving a “good death.”
Diagnosis of depression is more challenging in patients with advanced illness, since the physical symptoms typically associated with
depression (eg, changes in appetite, weight, energy level, libido, or sleeping) frequently occur in these patients as a result of their illness.
Studies have shown that the screening question, “Do you feel depressed most of the time?” is highly sensitive and specific in the medically
ill.
Feelings of pervasive helplessness, hopelessness, and worthlessness are not normal. Do not assume they are situational and leave them
unattended.

Psychosocial suffering and practical concerns

Emotional and coping responses to life-threatening illness may include a strong sense of shame, feelings of not being wanted, and/or inability
to cope. Adjustment to the loss of previous function, independence, control, and/or self-image may be difficult. Each change may lead to
tensions within relationships that further increase isolation and misery.
Worries about practical matters (eg, who the caregivers will be, how domestic chores will be done, who will care for dependents and pets,
etc) can create considerable distress. If support is not forthcoming or is insufficient, suffering may ensue or increase.

Physical suffering

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A host of physical issues may accompany advanced illness. These may include pain, breathlessness, anorexia/cachexia, weakness/fatigue,
nausea/vomiting, constipation, dehydration, edema, incontinence, loss of function, sleep deprivation, etc. Their presence, particularly if they
are unmanaged for long periods, may markedly increase suffering.

Spiritual suffering
The prospect of dying may evoke seemingly unresolvable existential concerns that are then experienced as suffering. As illness advances and
disability increases, the patient’s sense of his or her meaning, value, and purpose in life may all come into question. If there is a sense of
abandonment or punishment by God, faith and religious beliefs may be eroded and anger may ensue.

Common fears
In addition to current concerns, many patients are fearful about what the future will be like. They worry about pain and other symptoms, loss
of control or independence, abandonment, loneliness, indignity, loss of self-image, and being a burden to others. While their thoughts may be
unrealistic in the setting of quality care, many have witnessed suboptimal care in others that fuels their fears and fantasies.
Direct questions may be adequate to assess a patient’s fears. If not, discussing a series of scenarios and preferences, as is done during
advance care planning, may be helpful. When personal values and goals of care are being discussed, clarify the things the person most wants
to avoid. This may help to preempt unrealistic fears (see Module: Advance Care Planning).

Step 3: Affirm your commitment to care for the patient

Patients facing the end of life often have fears of abandonment. Listen to and acknowledge expressed feelings and fears. Make a commitment
to help find solutions to the issues of concern, both current and anticipated. Reinforce that you want to continue to be the patient’s physician
until the last possible moment. Explore options to allay immediate concerns and fears.
As a request for hastened death affects everyone who is close to the patient, a commitment to the patient also affirms a commitment to the
family and those close to the patient, including other caregivers.

Step 4: Address the root causes of the request

This section provides a general framework for addressing some of the potential root causes for a request for hastened death in each dimension
of suffering. Start by discussing the patient’s health care goals and preferences, explaining palliative care approaches and services, and
describing the legal alternatives to PAS. Remember that some patients may not trust either individual health caregivers or the health care
system to meet their needs.
This may relate either to culture or to past experiences. It helps to discuss this lack of trust with the patient at the outset, so that the issues can
be understood, if not dealt with, early.

Address psychological suffering

As psychosocial suffering leads to many of the requests for physician-assisted suicide or euthanasia, its management warrants considerable
attention. Start by assessing and managing any depression, anxiety, or delirium aggressively
As each patient’s emotional response to illness can be profound and coping responses varied, they will require careful exploration in a
positive and understanding way. Supportive counseling, which involves active listening and acknowledgment of the patient’s feelings, may
be woven into general care, or it may be provided more intensively through dedicated individual or group counseling. Social workers and
chaplains trained in supportive counseling can provide considerable assistance. Referral to trained counselors, psychologists, or psychiatrists
may be required if the issues are complex and/or the risks high.

Address social suffering, practical concerns

Stresses and conflicts in the social dimension or practical aspects of a person’s life can have profound effects on his or her will to live.
Express interest and inquire in detail about this aspect of the patient’s life:
What is the patient’s family situation? Does he or she live with someone? Are family members supportive? Are there unresolved issues?
How is the patient’s financial situation? Is health insurance available and sufficient?
Are legal affairs in order? Does the patient have a living will, power of attorney for health care, power of attorney for business affairs,
last will and testament?
Where would the patient like to receive care? Who is there to help? Who will the caregivers be? Is there tension over the caregiving role
for either party?
Who attends to domestic chores such as cooking, cleaning, shopping, banking, bill payments?
Are there any dependents the patient cares for, or pets? Who will care for them if the patient is not able to?
As this dimension often lies outside of the areas most physicians feel confident in addressing, consider requesting assistance from other
members of the health care team (eg, social work, nursing, chaplains, occupational therapy, etc). Additional resources for help and support
may be available in the community, through a health care institution, or from a local hospice or palliative care program.

Address physical suffering

Multiple studies indicate that patients with life-threatening illnesses have many physical issues that are unaddressed. If left unmanaged for
long periods, each can add considerably to a patient’s sense of suffering.
Today, suffering from physical symptoms because of lack of management is inhumane.
Modern medicine has more knowledge and tools to manage them than ever before. Each symptom needs to be pursued aggressively.
Successful management often requires extensive and careful thought and individual clinical trials until symptoms are brought under control.
If a physician is inexperienced, consultation with expert colleagues should not be delayed.
Function is critical to maintain independence. Physiatrists, nurses, and physical and occupational therapists may be helpful and
knowledgeable about the exercises and aids that can be used to optimize and maintain function and to ensure safety.

19
Sexuality and intimacy are integral aspects of each one of us, particularly through touch and the closeness to partners and family members we
cherish. Illness and disfigurement may change the way people are able to interact. To establish individual desires and tensions, facilitate
discussions between partners and key family members. Help them to look for alternatives that may be comforting.

Address spiritual suffering

The spiritual dimension of human experience is universally challenged in the face of a life threatening illness. Each person has a sense of
meaning and purpose to his or her life, and a sense of where he or she fits into the grand scheme of things. This may have a frankly religious
orientation or they may be expressed through faith or a personal sense of spirituality. Nevertheless, the transcendental dimension is present in
each one of us, and it is critical that this dimension be explored when a patient requests PAS or euthanasia.
Helping patients to establish or reestablish a sense of meaning and purpose is often fundamental to the relief of spiritual suffering.
Encouraging them to reminisce with family and friends; assisting with life closure, gift giving, and creation of legacies may also be helpful.
Some physicians feel comfortable dealing with spiritual suffering. Others feel inexperienced and out of their depth. As these issues are
critical and may be very time consuming, a skilled hospice chaplain who works with a psychiatrist or psychologist skilled in end-of life care
may bring considerable skill and support to both the patient and the physician.
While it would be ideal if the needed skills came from the patient’s own pastor, do not assume that all members of the clergy are equally
comfortable with the care of patients with advanced life-threatening illness. Like physicians, many have not received adequate training in
chaplaincy issues and are ill equipped to deal with the profound conflicts surrounding requests for physician-assisted suicide or euthanasia.

Address Fears
Fear of loss of control
The autonomy and control that each one of us has over our lives and affairs is central to our personhood. While this need for control varies in
some cultures, it is a central feature of Western society. For many, independence is profoundly challenged by illness that is debilitating and
deprives them of mastery or control over their day-to-day activities and their sense of future.
This fear of loss of control may be further heightened by fears that their expectations and needs won’t be addressed, or fears that people will
do things to them that they don’t want (eg, forced feeding, invasive procedures, life-sustaining therapies, etc).
The specific issues that are most important for each person to control are unique to that individual. They may include a whole range of issues,
including the ability to choose day-to-day activities and experiences that are meaningful, choices for therapies, settings of care, caregivers,
etc.
The physician can be instrumental in helping the patient to continue to realize as much control as possible, given the changes in function that
are likely to occur. This may take unusual flexibility on the part of the physician and the health care team. Educate and help the patient plan
for aspects of medical care that are rightfully under his or her control (eg, the ability to accept or refuse any medical intervention, life-
sustaining therapies, etc).
Encourage the patient to select personal advocates and proxy decision makers, prepare advance directives, and plan for death. This planning
can include funeral plans, wills, and disposing of personal belongings after death. Teach family members and caregivers alternate approaches
to caregiving that optimize patient participation in decision making, ie, instead of “doing without asking,” encourage family and caregivers to
“ask before doing.”

Fear of pain and other symptoms

While patients may find current symptoms acceptable, they frequently fear a future where symptoms will be out of control and unbearable,
particularly when they are dying. Reassure the patient that almost all symptoms can be well controlled. As appropriate, discuss alternate
approaches to symptom management, including anesthesia. Ensure that patients and families know that pain does not get suddenly worse as
death approaches. Help them to understand the difference between pain and terminal delirium, particularly if they have known someone else
who had a difficult death. As many patients fear adverse effects of medications, particularly drowsiness and confusion, discuss their
management should they occur.
The possibility of end-of-life sedation, should pain or other symptoms be unbearable for the patient and unmanageable by experts, may be
explored with the patient and family during advance care planning discussions. Some patients and families will find the possibility
reassuring; others will not want to consider it.
Most importantly, during all of these discussions, make a commitment to keep working to manage the symptoms until they are satisfactorily
controlled. Patients fear being told, “I’m sorry, there’s nothing more I can do.”

Fear of being a burden

In several studies, one of the things patients fear most about a life-threatening illness is the prospect of being a burden to others. This is, in
some ways, a corollary of the fear of losing control, particularly as our culture generally does not value being dependent on others.
Try to establish why the patient does not want to be a burden. If there are caregiving issues, facilitate a discussion between the patient and
family. In many cases, families are willing and eager to care for the patient, and their desires simply remain unspoken. If patients and families
are worried that family members will not have enough skill to provide adequate care, suggest home hospice care. This is the fundamental
goal of the home hospice team, to help educate, train, and supplement the family in the care of the patient.
Alternate care settings can be arranged as a backup if care at home does not go as planned. Home hospice agencies must make provisions for
brief periods of respite care if it is needed. If there are financial issues, help the patient find information and resources that will be acceptable
—many people are unaware of the services available. Social workers and nurses, who can help find solutions to issues and provide training
and backup to unskilled family members, can be a significant resource to the physician to help lessen the patient’s fear of being a burden.

Fear of Indignity
Patients may fear the loss of their dignity. As this is a complex concept that may include elements of being dependent, loss of control, being a
burden, being embarrassed, etc, explore what it means to the particular patient.

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Once the issues are clear, explore approaches to caring and resources that can help to maintain dignity. Ensure that the patient, where
possible, participates in decision making.
Ensure that family members and caregivers know how to approach and address these issues.
Ensure that everyone has permission for their roles and each task that they will do.
Reassure the patient that he or she has dignity in your eyes.

Fear of abandonment
For some patients, their worst possible fear is abandonment—by families, their friends, their physicians, or other health care professionals.
This fear can be heightened by the realization that others cannot cope with the illness and the changes it brings, or the role of being a
caregiver. Explore this fear in detail with the patient and family in a family conference. Try to establish how realistic the patient’s concerns
may be. If tensions seem high or there are indications that family and friends are not coping, a meeting with everyone may be helpful to
assess the situation. If caregiving is becoming onerous, offer a respite break or an alternate setting for care. As appropriate, try to connect
families to available supports in the community, particularly those provided by the interdisciplinary teams available through hospice and
palliative care programs.
Above all, when addressing fear of abandonment, the physician must be able to honestly reassure the patient about his or her plans for being
involved in ongoing care.

Step 5: Educate the patient and discuss legal alternatives

Deal with misconceptions

When making a request for PAS, patients may have misconceptions about the benefits of their requested course of action. Some may be
unaware of what emotional effort goes into planning for physician-assisted suicide or euthanasia; others may be unaware of the risk of
emotional consequences to family and friends, and to the personal legacy they hope to protect.

Legal alternatives
Patients may also not be aware of the legal alternatives available to them. This may be particularly true if they have not participated in
discussions to clearly define their goals of care and treatment priorities. As part of the process of discussion, planning, and decision making,
the physician may wish to discuss the 4 following legal alternatives to PAS:

Refusal of intervention
Patients should be clear that they have the right to consent to, or decline, any intervention
(eg, surgery, chemotherapy, pacemakers, ventilators, medications including antibiotics, IV fluids) or settings of care (eg, hospitalization) if
any of them seem too burdensome. They should also be aware that their choices to decline particular therapies will not affect their ability to
receive high-quality end-of-life care.

Withdrawal of treatment
Patients should be clear that they have the right to stop any treatment at any time. This includes the cessation of fluid and nutrition, either
enterally or parenterally. Again, they should know that their choices to withdraw particular therapies will not affect their ability to receive
high-quality end-of-life care.

Decline oral intake

Patients with advanced disease often lose appetite and/or thirst. Just like any other medical decision, a competent individual can determine
what goes into his or her mouth. Based on the principle of bodily integrity, force-feeding is not acceptable.
To assist with decision making, patients will usually benefit from knowledge that they will not suffer from dehydration or starvation. A
detailed discussion of their potentially protective properties and the appropriate management of symptoms should they occur will usually
allay fears and reduce anxiety considerably.
As fluids and food are synonymous with life, and culturally ingrained, family and caregivers will likely need considerable education and
support if the patient decides to cease oral intake. Encourage them to always have food and water accessible so that the patient can change his
or her mind at any time. Discuss the potential for anger and resentment if they persist in badgering or attempting to force things on the
patient. Above all, recognize their desire and need to give care and refocus them on activities that will be beneficial to everyone.

End-of-life sedation
For the rare patient with unbearable and unmanageable pain, or other intractable symptoms, who is approaching the last hours or days of his
or her life, the induction and maintenance of a state of sedation may be the only remaining option. Sedation in the imminently dying is
intended to produce a level of obtundation sufficient to relieve suffering without hastening death. This approach has an ethical basis that
derives from the importance of intended effect over possible secondary and unintended consequences.
Before end-of-life sedation is considered, it should be clear to the attending physician, members of the health care team, and consultants with
expertise in palliative care that all available therapies have been tried to their limits without benefit. Individual physicians should not consider
this issue without consulting others. This is not an alternative to high quality palliative care or limitations in available resources imposed by
institutions or health care funders.
If no other options are apparent, consider how the patient and family might react to this option. Advance care planning discussions and recent
statements they have made may provide guidance. If the team feels that the patient and family will not perceive the discussion as a sign of
abandonment, discuss the option with them and solicit their opinion.
Before making a decision, it should be clear to everyone that the intent in offering sedation is to make the patient comfortable during the last
days of his or her life when all other alternatives have not been successful. If anyone perceives that the intent of sedation is to kill the patient
and not simply relieve suffering, the approach should not be pursued.

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If the patient and family find the option acceptable and the patient chooses to receive sedation, intermittent or continuous intravenous or
subcutaneous infusions of midazolam, lorazepam, propofol, or barbiturates have been used successfully to induce sedation and reduce
awareness. Opioids are not recommended if the primary goal is to induce sedation. However, if the patient has been in pain, opioids will need
to be continued so that the sedated patient will not experience pain. Follow standard opioid dosing guidelines and alter doses if renal
clearance decreases.;
If the patient dies while receiving sedation and appropriate doses of medication were used, the death is attributable to the underlying
illnesses, not the sedation.

Step 6: Consult with colleagues

A request for physician-assisted suicide may be one of the most challenging situations a physician will face in his or her practice of medicine.
Unfortunately, it is in precisely these situations that physicians may hesitate to involve someone else. There may be several reasons for such
reluctance. For some the subject raises personal issues. Others may have the conviction that it is not appropriate to talk about death. A few
may be reluctant to discuss requests for physician-assisted suicide or euthanasia because of the legal implications of the situation.
As requests for hastened death can have considerable personal, ethical, and legal ramifications, they should not be dealt with in isolation, but
rather with the support and input of at least one trusted colleague or advisor. This person may be a mentor, a peer, a religious advisor, or an
ethics consultant. Physicians may also find considerable support from nurses, social workers, chaplains, and other members of the
interdisciplinary team who are involved in the patient’s care.

Response to patient requests

Requests for physician-assisted suicide occur infrequently in most physicians’ careers.
Clinical experience suggests that most requests will resolve if unmet needs are addressed by using the approach offered in this module.
Physician-assisted suicide remains illegal in most countries. When PAS requests are declined, full comfort care should continue and the
professionals should continue to work in partnership with the patient and family.
However, despite doubled and redoubled efforts to assess and address root causes of suffering and provide high-quality palliative care,
requests for physician-assisted suicide and euthanasia may occasionally persist. It is not the purpose of this introductory module to discuss
such rare cases. These are likely to be complex and should be handled in consultation with experts.

Summary
A request for physician-assisted suicide or euthanasia indicates unrelieved suffering. This module has presented a practical approach for
physicians to use to respond to such requests. The physician needs to treat all requests seriously and compassionately, look for the root causes
of the request, and work with the patient and others to relieve those root causes. Palliative care has never been as well developed and
powerful in the history of medicine as it is now. Insisting on its widespread availability without legislative barriers, and making use of its
resources, will relieve most of the suffering that compels requests for PAS or euthanasia. Existing legal options for control and comfort can
provide alternatives for most if not all patients who persist in their request for PAS or euthanasia.

Acknowledgement
Medina MF. The Philippine Palliative Care Education Program. Curriculum for Primary Care. PCEP-PC. 2008; Adapted from Emanuel LL,
von Gunten CF, Ferris FD, eds. The Education in Palliative and End-of-life Care (EPEC) Curriculum. The EPEC Project, 1999, 2003.

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