Death and Dying, Advance Directive, Euthanasia

and Physician Assisted Suicide

In Partial Fulfillment of Requirements

In Nursing Ethics

Submitted to the Faculty of

Graduate School and
School of Nursing

Dennis N. Muñoz, RN, RM, LPT

June 09, 2021

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 Table of Content

Introduction 3
Living with Dying 3
Suffering in Dying 4
Use of Medications 5
Psychological Aspects of Dying 7
Physiological Aspects of Dying 10
Stages of Grief 11
Hospice 14
Physician-Assisted Death 16
The Role of Health Professionals 18
Living Wills and Advance Directives 21
Power of attorney 21
Living will 22
Do not resuscitate and do not intubate orders 24
Creating advance directives 24
Reviewing and changing advance directives 26
Physician orders for life-sustaining treatment (POLST) 26
Euthanasia 28
Assisted suicide 30
Terminal sedation and palliative sedation 31
Our key assumptions 33
Basic concepts related to euthanasia and Physician Assisted Suicide (PAS) 34
The right to die 34
Autonomy 37
Individual autonomy and perspectives from the individual’s family 38
Respect for human life 42 42
Obfuscations and the main arguments of proponents and opponents 43
The role of the physician: “doctor as healer” 48
Alternatives to euthanasia 51
Consequences 52
References 57

Introduction

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 Death is the final stage of life. Dying is a process or a preparation for the final

conclusion—death. For some, dead is a four-letter word not to be discussed; to others,

the word represents an unpleasant reality difficult to think about or plan for. Some

handle the concept realistically and well. In many respects, the way people face their

dying or their death may be determined by how they live. Most health professionals

will work with clients who die and will respond to their surviving loved ones. How

health professionals face this process may also be determined, in part, by how they

face their own life and their own death. Caring, understanding, and compassion are

essential ingredients in dealing with death and dying.

Living with Dying

Dying is a personal event. No two people die alike. Some die very quickly

whereas others have time to plan for their deaths. Most hope for an easy death. To

attempt to identify particular models for the “best” way to die is fruitless. None exists.

Each person is unique, and the life experiences brought to the situation are varied.

However, some helpful generalizations can be made.

1. The way people live is often mirrored in the way they die, 2. People with useful

support systems, such as friends, family, and faith in life, may find this support

helpful in dying, 3. Experiencing the death of someone close brings the reality of

dying more into focus, 4. Intellectual preparation for dying, such as writing a will, an

obituary, or planning a funeral may ease the fear of death, 5. Relationships with

families and friends change, 6. Basic personalities usually remain unchanged, but

moods may vary radically, 7. Personal goals are reevaluated, 8. Pain, suffering, and

dependence are feared most by the dying, 9. Dying is not a casual experience, 10. The

age of dying persons in part determines their reaction to death, 11. Persons who

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experience chronic disease or disability face their immortality more acutely than

others, and 12. Cultural mores influence attitudes toward deat.

Suffering in Dying

Generally, everyone says they would prefer dying peacefully in their sleep or

dying suddenly without warning or pain. In truth, most of us will lose our lives more

gradually. Old age, debility, even senility may creep in before we realize that we have

lost much of what we valued in our faculties. We may be diagnosed with a life-

threatening illness that we believe will cause our death. Some will suffer in pain and

agony. Some will be the object of medical experimentation and technology. It is this

fear of suffering, the fear of dependence, the fear of loss of control, the fear of leaving

loved ones, and the fear of pain that scares us most about death. Short-term suffering

presents a set of problems different from those of long-term suffering. This can best

be seen in the following situations:

Example 1

A 45-year-old teacher learned in June that chronic myelocytic leukemia accompanied

by blastic transformation was destroying his body. The prognosis was poor.

Hospitalization and chemotherapy followed, with severe side effects and pain. He

died 2 months later, never returning home.

Example 2

A 50-year-old electrician was diagnosed as having cancer of the colon. Surgery

followed, and a permanent colostomy was established. Postoperatively, the client did

well and later returned to work part-time. Within a year, cancer metastasized and

complications resulted. Consultation with specialists recommended only symptomatic

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treatment. Her pain required massive doses of analgesics to keep her comfortable for

the remaining 6 months. The electrician was unable to return to work but remained

home until about 6 weeks before death, when she was again hospitalized.

ln a comparison of these two examples, time, costs, and dependency are three

variables to consider. Obviously, the time of pain and suffering was longer for the

electrician than for the teacher. The severity, however, cannot be compared. Overall

costs are far greater for the electrician than the teacher, but nothing is known of

insurance coverage or family resources. Either situation could be a financial burden

on survivors. Dependency of these clients on their friends and family is somewhat

different. The teacher had to depend on someone to take care of any personal matters,

which might include job, children, and finances, for approximately 2 months. The

electrician, however, was dependent on family for physical and nursing care in the

home. She also needed someone to take care of personal matters from diagnosis to

death, approximately 18 months. Even the length of time is difficult to establish. Time

is relative; that is, 2 months and 18 months may both be considered short term when

compared with an individual in a state of semi-consciousness for 4 or 5 years.

Use of Medications

Medications are used by the suffering when dying in both the hospital and at

home. The greatest difficulty with medications arises in long-term suffering.

Medications are given for many reasons, including analgesics for pain, sedatives for

sleep, and specific medications for the particular disease condition. Antidepressants

and tranquilizers also may be prescribed. Medications are to be respected for their

intended action and the client’s needs. Problems arise when family members, friends,

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and even health professionals circumvent or question the physician’s orders for

medications. This is often disastrous for the client. All persons close to the client

ought to understand the physician’s orders and the use of the prescribed medications.

Family members should know the reasoning of the physician so that any

questions arising are not misunderstood. For example, imagine the fear a loved one

feels when the pharmacist says, “Do you know this is a near-lethal dose?” Unless the

loved one knows that this amount is needed to keep the pain level of the client

bearable, the loved one may withhold the medication and even begin to distrust the

physician. Family members need to understand that medications may be given in

different dosages, frequencies, and combinations for one dying client than for another.

Age, weight, illness (whether chronic or acute), and the client’s threshold for pain all

influence a physician’s choice of analgesics.

Sometimes physicians and health professionals are reluctant to prescribe or

administer

medications even though they are within the approved dosage range. In fact, in some

cases health professionals will administer less than the prescribed dose because they

believe what was prescribed was too much. Some may fear the client will become

addicted. Physicians may see opioid orders or prescriptions as crimes, not as treatment

issues. They fear investigation. The client or family may want to use less than the

amount prescribed because they believe it is too much. Clients may wait too long to

ask for pain medication, thinking they “can handle it.” All have the potential of

working against the clients’ comfort.

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Psychological Aspects of Dying

Dying clients differ in their psychological experiences. Although basic

personalities remain the same, changes occur. A person normally calm and loving

may have periods of violence and hostility. A happy person may become severely

depressed. In fact, a person who is nearly comatose or close to death may be unaware

of his or her responses to questions or be unable to make any decisions. An individual

who usually is able to accept medical facts may totally deny a life-threatening illness.

Relationships may change. Some individuals are incapable of continuing a close

relationship with a person who is dying. Closest friends may become aloof and

distant. Some may fear touching or caressing the dying person. The dying person may

reject any close contact or relationships. The following quotation, words from a dying

person, illustrates this controversy: “I am not sure why, but I want to accept, and end

up rejecting; I am willing to surrender, but more often seek to control.”1 The opposite

may also be true. A stronger bond of friendship can develop, and new friendships will

be made, possibly from individuals in similar circumstances. Broken relationships

may be healed.

Relationships are important and should be encouraged. They provide strength

and support that may not be available through any other source. The depth of

relationships during this time and the degree of acceptance by dying clients may

depend on their self-image. When a person is ill, is in pain, lives in a deteriorating

body, and possibly is unable to perform the activities of daily living, self-image is

fragile. When self-image is lacking, hope is lost; dying clients feel useless, may think

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they are burdens, and will have difficulties accepting help. The psychological effect of

a poor self-image may even hasten death.

Dying clients may not be physically able to continue working. If they are sole

wage earners, this may present a financial crisis, especially if the unemployed period

extends for a long time. Unemployed clients may be bored, feel useless, and worry,

and their self-image suffers. For example, dying clients may worry that they are not

fulfilling their usual role in the family and worry about their lack of control.

Personal goals for the dying person are altered or may even become

nonexistent. Goals such as seeing a child graduate or a grandchild born may be seen

as unrealistic to the dying because of limited time. The dying person either gives up or

strives to live until a certain event takes place. The total loss of personal goals, no

matter how insignificant they may appear, can be devastating to the dying and to

persons caring for them. Goals may be different for the dying than for family

members. Indecision is often a psychological dilemma accompanying the lack of

personal goals. People close to the dying commonly recommend goals and help in the

decision-making process. This must be done sensitively and realistically.

Communication may become difficult. Aside from any physiological problems

precluding speech or communication, what dying clients are unable to understand or

hear may depend on what they choose to hear or are ready to understand.

Communication may be complicated further if the client’s condition has not been

honestly addressed. Of course, the opposite may be true. Some dying clients express

the ability to communicate with greater depth because of the urgency of their

circumstances.

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 Many communication difficulties center on the question of whether dying

clients should be told of their terminal condition. How much information should they

be given? Some people believe that all clients need to be told the medical facts by

physicians and treated openly and honestly by all health professionals. They believe

informed clients are better able to face death and are less afraid of the truth than are

many health professionals. Other people believe no clients should be told they are

dying, or that only those clients who give some verbal or nonverbal indication that

they want to know should be told.

In some cultures, only family members and not the client are told of

impending death. Only clients who can handle the truth should be told. Some clients

may refuse to set goals, give up hope, and wait impatiently for death.

Fear is often a traumatic psychological aspect of dying. There is fear of pain, fear of

long suffering, fear of losing independence, fear of financial ruin, and fear of death

itself. The client’s fears ought to be recognized and alleviated, if possible. To

recognize these fears requires active and passive listening on the part of all people

close to the dying individual and a willingness on the part of this individual to express

those fears.

Much fear can be lessened if people close to the dying anticipate the fear and

provide possible solutions and appropriate resources. Outside help may be sought, if

necessary. Social workers, public health nurses, home health aides, clergy, and other

health professionals can be valuable resources. Clients’ fear should be taken seriously,

and reference to their supposed unimportance should be avoided. The psychological

aspects of death are difficult for family, physicians, and health professionals because

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they may not be tangible. They generally are less understood than the physiological

aspects of death and are often left to laypersons rather than professionals. To care

for the physical and ignore the psychological is to treat only half the client.

Physiological Aspects of Dying

Medicine has numerous treatments for some of the physiological problems of

suffering and pain experienced in the dying process. Sometimes the treatments are

sufficient; at other times, they barely address the problem. Untreated or undiagnosed

physiological problems may cause or enhance psychological difficulties for dying

clients. Separating the psychological from the physiological is difficult. For example,

pain and suffering, if untreated by therapy or medicinal means, may prove to be a

psychological barrier for clients, their families, and health professionals.

Loss of communication skills, such as in the aphasic client or in the comatose

client, may be frustrating and unbearable. If clients are indecisive or suffer from

dementia because of physiological changes, they may not be able to participate in the

decision-making process of their life-threatening illness. Family members may need

to assume greater roles in talking for clients and making decisions.

Other common physiological problems encountered include loss of bodily

functions; inability to move or ambulate; inability to eat or drink; and inability to

tolerate medications, treatments, light, or sound. In the hospital setting, these

symptoms may be treated without much difficulty. However, if clients choose to die

at home, professional help or training may prove valuable. If clients become severely

disabled physically, they may be reluctant to go anywhere, even to the ambulatory

health care setting. Family members may become exhausted caring for their loved

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ones or be unable to administer some of their treatments. The more severe these

physiological problems, the more difficult daily existence becomes.

Physiological difficulties may hinder sexual identity and involvement. The

expression of sexuality may be altered. The physiological and psychological aspects

of sexuality are so intertwined that cause and effect are difficult to determine. It may

be difficult or impossible to have sexual intercourse; however, there are many other

ways to express love and caring or to relieve sexual tension. A discussion of the

expression of sexuality and related client problems needs to be initiated with the client

and partner.

Physiological and psychological problems are to be anticipated, diagnosed,

and treated as much as possible. Treating the physiological and psychological aspects

of clients enables total client care.

Stages of Grief

Elisabeth Kübler-Ross defines five stages of grief or responses to dying as

follows. There is no set period for any one stage, nor will every dying person go

through every stage. Some believe that no real grief work begins until you have been

through all five stages. Some may stay in denial until death; others may manage

denial and bargaining and stumble in depression. Still others may move back and

forth from one stage to another. Some may move through some or all of the stages

several times. There is no set or acceptable pattern. Each dying client is an individual,

as are family members. However, the stages do offer information on how to relate to

clients and their families, who will experience similar stages. Elisabeth Kübler-Ross

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defines five stages of dying and death:

1. Denial

2. Anger

3. Bargaining

4. Depression

5. Acceptance

Denial

Clients may deny their life-threatening or terminal illness or go through

periods of disbelief. Sometimes it is a result of shock when they are first told. Clients

commonly say, “This is not happening to me” or “I’ll go to another physician to see

what’s wrong.” Denial generally is a temporary defense and offers therapeutic

meaning to clients. Health professionals should listen to clients during this stage.

Trying to contradict clients or force them to believe what is happening to them will be

to no avail. Encourage clients to talk about death. Listen, listen, and listen.

Anger

Clients suddenly realize “It is me. This is happening to me. Why me?” They

may become “problem clients” and are envious and resentful. Anger may be dispersed

in all directions, at people and toward the environment. Rage and temper tantrums can

occur. Professionals and family members need to be understanding no matter how

angry the client becomes. Listening to clients is important to allow them to vent their

own feelings.

Bargaining

During this stage, clients try to make deals with physicians, God or higher

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being, or family, usually for more time or for a period of comfort without pain.

Clients tend to be more cooperative and congenial. Common responses include the

following: “Please let me see my homeland again.” “I’ll be so good, if I can just have

3 pain-free hours.” “Dear God, I’ll never … if you make me well.” Health

professionals can listen to dying clients’ requests but not become a party to the

bargain. Some bargaining may be associated with guilt, and any indication of this

should be mentioned to the physician. Bargaining can have a positive effect. It may

give

the client the hope and stamina to reach a desired goal. It is OK to mourn and cry.

Allow for silences.

Depression

The dying client’s body is deteriorating, sometimes rapidly; financial burdens

are likely increasing; pain is unbearable; and relationships are severed. All can lead to

depression. The dying are losing everything and everyone they love. Dying may be a

time of tears, and crying may allow relief. Professionals who are happy, loud, and

reassuring will not provide much help to depressed clients. Clients may need to

express their sorrow to someone or merely have someone close. They may have little

need for words at this stage. Simple tasks may be impossible. Helplessness is real.

Acceptance

The final but perhaps not lasting stage is when clients are accepting of their

fate. They usually are tired, weak, and able to sleep. They are not necessarily happy,

but rather at peace. Professionals will be aware that clients may prefer to be left alone

and not bothered with world events or family problems. Family members usually

require more help, understanding, and support than clients in this stage. Touching and

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the use of silence may prove helpful. Throughout the experience of loss, there will

come a time when friends and neighbors stop calling, “closure” has occurred by the

dying person and everything is slowly getting back to normal. Some say this is when

the real grief work begins. A common definition of grief work is summarized by the

acronym TEAR.

Stages of Grief

T To accept the reality of the loss

E Experience the pain of the loss

A Adjust to the environment of what was lost

R Reinvest in the new reality

Hospice

Dictionaries define the term hospice as “lodging for travelers or young

persons,

especially when maintained by a religious order.” The term later was used to

describe lodging for dying clients. The first such hospice, Saint Christopher’s, was

formed by Cecily Saunders in London in 1965. Since then, the hospice concept has

expanded throughout the United States.

Hospice provides care for the terminally ill at home, in a hospital, in a skilled

nursing home, or in a special hospice facility. The main objective of care is to make

clients comfortable, “at home,” and close to family. Treatments such as

cardiopulmonary resuscitation, intravenous therapy, nasogastric tubes, and antibiotics

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are discouraged. Treatments are given in light of the client’s personal and social

circumstances.

The hospice staff attempts to create a positive atmosphere. Death is seen as

“all right.” A balance is kept between human needs and medical needs. Children are

encouraged to be in the hospice as a reminder that life is an ongoing process. Clients

might share a cup of tea with staff and each other rather than receiving an intravenous

solution during their last hours.

An advantage hospice offers is staff members who are experienced and want

to care for the dying. Its services are provided only to the dying, and death is managed

with dignity.

The expense is generally less than acute care costs, and may be covered by

insurance. In a special hospice facility, the dying client is not isolated behind curtains

but rather is surrounded by others. An empty bed remains empty for at least 24 hours

to allow adjustment by everyone. In addition, survivors are helped to deal with the

death. If the hospice care is at home, clients are in familiar surroundings, may have

their favorite foods, and are close to loved ones.

The hospice does have disadvantages. One problem is whether family

members, with a hospice’s help, can handle the care at home. It may be too much,

physically and emotionally. Also, what about dying clients? Are they comfortable

with the kind of care they receive in the hospice? Do they need or want more? Are

they comfortable dealing with death? We may be conditioned to expect dying clients

to be in hospitals, not homes.

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Physician-Assisted Death

Questions arise about whether physician-assisted death or euthanasia should

be endorsed. Are the two similar, or are they different enough that the arguments for

one do not apply to the other? It is physician-assisted suicide when the physician

provides a client with a lethal dose of medication so that the client can self-administer

the medication; it is active euthanasia when a physician administers a lethal dose to

the client. In case of either physicianassisted death or euthanasia, the physician is

active and involved; however, in both cases the client decides whether to ask for the

medication. The client makes the choices in dying. In physician-assisted death, the

client acts last, whereas in active euthanasia, the physician acts last.

Just as California and Washington were forerunners with their living wills and

natural death laws, they were forerunners in seeking legislation that would give

people the option to seek “aid in dying from physicians to end life in a dignified,

painless and humane manner.” Such proposed laws are much broader in their scope

than any living will or physicians’ directive. To date neither state has passed

physician-assisted suicide laws.

In 1994, Oregon passed the Death with Dignity measure that was later

challenged by the courts. In 1997, the act was reaffirmed by the Oregon voters. The

measure is the nation’s first and, to date, the only state to allow a physician to

prescribe a lethal dose of medication when asked by a terminally ill client. The four

safeguards for this measure are as follows: (1) the attending physician must truly

convey informed consent, which must include all feasible opportunities such as pain

management, hospice, and palliative care. (2) The attending physician’s diagnosis and

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prognosis must be confirmed by a consulting physician. The latter physician must

verify that the client has made a voluntary and informed decision. (3) If either

physician thinks the client might have depression that might impair judgment, a

counseling session must be attended. (4) The client making the request must do so

both orally and in writing.

The law details specific time lines and a waiting period for the client before

receiving the lethal medication. The request must be witnessed by at least two people

who can verify the client’s capacity to make a decision and that the decision is

voluntary. Obviously, the measure poses valid concerns, but it is a testimony to the

growing desire to have increased legal protection for options in dying.

Once the Oregon Death with Dignity Act was reaffirmed in 1997 by Oregon voters,

people were assisted in suicide in 1998. Most recent statistics, available at this

writing, indicate 33 individuals in 2004 and 35 in 2005. The median age of the

individuals was 64 to 70 years. The majority of these individuals had end-stage

cancer. Chronic lung disease was also common. The majority were in hospice before

death.

In fall 2001, U.S. Attorney General Ashcroft determined that the government would

step in to revoke the licenses of any physician who prescribed controlled substances

to clients seeking physician-assisted death in Oregon. By a 6-to-3 vote the U. S.

Supreme Court ruled that Ashcroft exceeded his authority when he tried to block the

Oregon law to help terminally ill clients die. The Supreme Court decision opens the

door for other states to legalize physician-assisted death. Some predict that California

and Vermont will be the next states to pass similar legislation.

In 1997, the U.S. Senate passed a bill barring the federal government from financing

physician-assisted death. The vote was 99 to 0. The same measure previously cleared

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the House of Representatives by a vote of 398 to 16. Medicare and Medicaid are

prohibited from funding physician-assisted death. In June 1997, all nine Supreme

Court justices refused to accept the fact that assisted death was a fundamental

liberty for the terminally ill. Legislation on physician-assisted death continues to be

controversial, contradictory, confusing, and as emotional as legalization of abortion

has been in the United States. Some questions to ponder on the subject include the

following: Will potentially lethal medications be restricted? How accurate can the

prediction of death within 6 months be? Will a working definition of “terminal” be

relaxed? Can physicians recognize depression or the inability of a client to make such

a choice? What happens to the client who asks for a lethal medication but is unable to

administer it? Are that person’s rights less than those of the person who is

able to administer the dose?

The Role of Health Professionals

Clients with life-threatening or terminal illnesses have special needs. Their

reactions in the dying process are expressed in their various stages or responses.

Regardless of how they present themselves, health professionals need to assess where

clients are and react openly to them.

One of the best ways to begin interacting with the dying client is to take a

good, hard look at your own attitudes toward pain, suffering, and dying. How can you

be especially sensitive to these clients without being obvious? Will you be able to

respond to the client’s total needs rather than merely the client’s medical needs? Can

you be comfortable when clients cry, when clients laugh, when they joke about their

condition?

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 Health care professionals need to be able to talk without fear or anxiety as they

provide information, and they must be able to listen to dying clients. For example, a

health care employee may be asked, “Will I get addicted to these pain pills?” If the

employee’s thoughts are, “The doctor never should have given you anything so

powerful,” this attitude will be sensed by the client.

Dying clients may exhibit negative or distasteful behaviors in the health care

setting. How will you handle it? Will you take it personally? React negatively? Ignore

it? Clients may ask questions with hidden meanings or be truly blunt. Are you aware

of nonverbal clues from clients? How will you react? What if you do not know any

answers?

Dying clients may develop gross physical deformities or radically altered

physical appearances. Will you be able to manage? If so, how? Family and friends

also will require your attention. What will you do when you reach the end of your

rope or become too emotionally involved? Client referrals may be made to

counselors, clergy, attorneys, social workers, and hospice organizations. Do not fool

yourself that you can be all things to all people. Health professionals should feel free

to refer.

After the client has died, physicians and employees will turn their focus to the

survivors.

In telling survivors of the death, be honest and caring. It is a sorrowful and

painful time for survivors, and they will need your utmost attention. Try to provide

whatever support they need and remain with them until some family or close friends

can come. During the grieving process, survivors may call or come to the ambulatory

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health care setting for information or assistance. If you are unable to answer their

questions or meet their needs, refer them to someone who can. Funeral directors and

the clergy offer valuable help in planning the funeral or death ritual, answering

questions about the human remains, and helping survivors through the grieving

process. Organizations such as Compassionate Friends (parents and families who

have lost a child) and groups for widows or widowers can be recommended, if

appropriate.

Children and death pose sensitive situations. The death of a child is a profound

emotional experience for everyone, especially family. Explaining death to a child is

also difficult. The age and maturity of children are to be considered. Children deserve

the same honesty as an adult and need to be told that sorrow is acceptable and crying

is okay. Reassure children that death is in no way their fault. Using a phrase such as

“God took your daddy away” may cause the child to blame God. Follow the lead of

children in their questions, and tell children you do not have all the answers.

Memories should be cherished and encouraged. Children require the same ritual and

sorrow that other family members do, but do not force them to attend a funeral if they

do not want to.

Living Wills and Advance Directives

Living wills and other advance directives are written, legal instructions

regarding your preferences for medical care if you are unable to make decisions for

yourself. Advance directives guide choices for doctors and caregivers if you're

terminally ill, seriously injured, in a coma, in the late stages of dementia or near the

end of life.

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 Advance directives aren't just for older adults. Unexpected end-of-life

situations can happen at any age, so it's important for all adults to prepare these

documents.

By planning ahead, you can get the medical care you want, avoid unnecessary

suffering and relieve caregivers of decision-making burdens during moments of crisis

or grief. You also help reduce confusion or disagreement about the choices you would

want people to make on your behalf.

Power of attorney

A medical or health care power of attorney is a type of advance directive in

which you name a person to make decisions for you when you are unable to do so. In

some states this directive may also be called a durable power of attorney for health

care or a health care proxy.

Depending on where you live, the person you choose to make decisions on

your behalf may be called one of the following:

1. Health care agent

2. Health care proxy

3. Health care surrogate

4. Health care representative

5. Health care attorney-in-fact

6. Patient advocate

Choosing a person to act as your health care agent is important. Even if you

have other legal documents regarding your care, not all situations can be anticipated

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and some situations will require someone to make a judgment about your likely care

wishes. You should choose a person who meets the following criteria:

1. Meets your state's requirements for a health care agent

2. Is not your doctor or a part of your medical care team

3. Is willing and able to discuss medical care and end-of-life issues with you

4. Can be trusted to make decisions that adhere to your wishes and values

5. Can be trusted to be your advocate if there are disagreements about your care

The person you name may be a spouse, other family member, friend or

member of a faith community. You may also choose one or more alternates in case

the person you chose is unable to fulfill the role.

Living will

A living will is a written, legal document that spells out medical treatments

you would and would not want to be used to keep you alive, as well as your

preferences for other medical decisions, such as pain management or organ donation.

In determining your wishes, think about your values. Consider how important

it is to you to be independent and self-sufficient, and identify what circumstances

might make you feel like your life is not worth living. Would you want treatment to

extend your life in any situation? All situations? Would you want treatment only if a

cure is possible?

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 You should address a number of possible end-of-life care decisions in your

living will. Talk to your doctor if you have questions about any of the following

medical decisions:

1. Cardiopulmonary resuscitation (CPR) restarts the heart when it has stopped

beating. Determine if and when you would want to be resuscitated by CPR or

by a device that delivers an electric shock to stimulate the heart.

2. Mechanical ventilation takes over your breathing if you're unable to breathe

on your own. Consider if, when and for how long you would want to be

placed on a mechanical ventilator.

3. Tube feeding supplies the body with nutrients and fluids intravenously or via

a tube in the stomach. Decide if, when and for how long you would want to

be fed in this manner.

4. Dialysis removes waste from your blood and manages fluid levels if your

kidneys no longer function. Determine if, when and for how long you would

want to receive this treatment.

5. Antibiotics or antiviral medications can be used to treat many infections. If

you were near the end of life, would you want infections to be treated

aggressively or would you rather let infections run their course?

6. Comfort care (palliative care) includes any number of interventions that may

be used to keep you comfortable and manage pain while abiding by your

other treatment wishes. This may include being allowed to die at home,

getting pain medications, being fed ice chips to soothe mouth dryness, and

avoiding invasive tests or treatments.

7. Organ and tissue donations for transplantation can be specified in your living

will. If your organs are removed for donation, you will be kept on life-

23
 sustaining treatment temporarily until the procedure is complete. To help

your health care agent avoid any confusion, you may want to state in your

living will that you understand the need for this temporary intervention.

8. Donating your body for scientific study also can be specified. Contact a local

medical school, university or donation program for information on how to

register for a planned donation for research.

Do not resuscitate and do not intubate orders

You don't need to have an advance directive or living will to have do not

resuscitate (DNR) and do not intubate (DNI) orders. To establish DNR or DNI orders,

tell your doctor about your preferences. He or she will write the orders and put them

in your medical record.

Even if you already have a living will that includes your preferences regarding

resuscitation and intubation, it is still a good idea to establish DNR or DNI orders

each time you are admitted to a new hospital or health care facility.

Creating advance directives

Advance directives need to be in writing. Each state has different forms and

requirements for creating legal documents. Depending on where you live, a form may

need to be signed by a witness or notarized. You can ask a lawyer to help you with the

process, but it is generally not necessary.

24
 Links to state-specific forms can be found on the websites of various

organizations such as the American Bar Association, AARP and the National Hospice

and Palliative Care Organization.

Review your advance directives with your doctor and your health care agent to

be sure you have filled out forms correctly. When you have completed your

documents, you need to do the following:

1. Keep the originals in a safe but easily accessible place.

2. Give a copy to your doctor.

3. Give a copy to your health care agent and any alternate agents.

4. Keep a record of who has your advance directives.

5. Talk to family members and other important people in your life about your

advance directives and your health care wishes. By having these

conversations now, you help ensure that your family members clearly

understand your wishes. Having a clear understanding of your preferences

can help your family members avoid conflict and feelings of guilt.

6. Carry a wallet-sized card that indicates you have advance directives,

identifies your health care agent and states where a copy of your directives

can be found.

7. Keep a copy with you when you are traveling.

Reviewing and changing advance directives

25
 You can change your directives at any time. If you want to make changes, you

must create a new form, distribute new copies and destroy all old copies. Specific

requirements for changing directives may vary by state.

You should discuss changes with your primary care doctor and make sure a

new directive replaces an old directive in your medical file. New directives must also

be added to medical charts in a hospital or nursing home. Also, talk to your health

care agent, family and friends about changes you have made.

Consider reviewing your directives and creating new ones in the following situations:

 New diagnosis. A diagnosis of a disease that is terminal or that significantly

alters your life may lead you to make changes in your living will. Discuss

with your doctor the kind of treatment and care decisions that might be made

during the expected course of the disease.

 Change of marital status. When you marry, divorce, become separated or are

widowed, you may need to select a new health care agent.

 About every 10 years. Over time your thoughts about end-of-life care may

change. Review your directives from time to time to be sure they reflect your

current values and wishes.

Physician orders for life-sustaining treatment (POLST)

In some states, advance health care planning includes a document called

physician orders for life-sustaining treatment (POLST). The document may also be

26
called provider orders for life-sustaining treatment (POLST) or medical orders for

life-sustaining treatment (MOLST).

A POLST is intended for people who have already been diagnosed with a

serious illness. This form does not replace your other directives. Instead, it serves as

doctor-ordered instructions — not unlike a prescription — to ensure that, in case of an

emergency, you receive the treatment you prefer. Your doctor will fill out the form

based on the contents of your advance directives, the discussions you have with your

doctor about the likely course of your illness and your treatment preferences.

A POLST stays with you. If you are in a hospital or nursing home, the

document is posted near your bed. If you are living at home or in a hospice care

facility, the document is prominently displayed where emergency personnel or other

medical team members can easily find it.

Forms vary by state, but essentially a POLST enables your doctor to include

details about what treatments not to use, under what conditions certain treatments can

be used, how long treatments may be used and when treatments should be withdrawn.

Issues covered in a POLST may include:

1. Resuscitation

2. Mechanical ventilation

3. Tube feeding

4. Use of antibiotics

5. Requests not to transfer to an emergency room

6. Requests not to be admitted to the hospital

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7. Pain management

A POLST also indicates what advance directives you have created and who

serves as your health care agent. Like advance directives, POLSTs can be canceled or

updated.

Euthanasia

Euthanasia is an emotionally charged word, and definitional confusion has

been fermented by characterizations such as passive versus active euthanasia. Some

have suggested avoiding using the word altogether.1,2 We believe it would be a

mistake to abandon the word, but we need to clarify it.

The word’s etymology is straightforward: eu means good and Thanatos means

death. Originally, euthanasia meant the condition of a good, gentle, and easy death.

Later, it took on aspects of performativity; that is, helping someone die gently. An

1826 Latin manuscript referred to medical euthanasia as the “skillful alleviation of

suffering”, in which the physician was expected to provide conditions that would

facilitate a gentle death but “least of all should he be permitted, prompted either by

other people’s request or his own sense of mercy, to end the patient’s pitiful condition

by purposefully and deliberately hastening death”.3 This understanding of euthanasia

is closely mirrored in the philosophy and practice of contemporary palliative care. Its

practitioners have strongly rejected euthanasia.4

Recently, the noun has morphed into the transitive verb “to euthanize”. The

sense in which physicians encounter it today, as a request for the active and

intentional hastening of a patient’s demise, is a modern phenomenon; the first sample

sentence given by the Oxford English Dictionary to illustrate the use of the verb is

28
dated 1975.5 The notion of inducing, causing, or delivering a (good) death, so

thoroughly ensconced in our contemporary, so-called “progressive values” cultural

ethos, is a new reality. That fact should raise the question: “Why now?” The causes

go well beyond responding to the suffering person who seeks euthanasia, are broad

and varied, and result from major institutional and societal changes.6

Physicians need a clear definition of euthanasia. We recommend the one used

by the Canadian Senate in its 1995 report: “The deliberate act undertaken by one

person with the intention of ending the life of another person in order to relieve that

person’s suffering.”7

Terms such as active and passive euthanasia should be banished from our

vocabulary. An action either is or is not euthanasia, and these qualifying adjectives

only serve to confuse. When a patient has given informed consent to a lethal injection,

the term “voluntary euthanasia” is often used; when they have not done so, it is

characterized as “involuntary euthanasia”. As our discussion of “slippery slopes” later

explains, jurisdictions that start by restricting legalized euthanasia to its voluntary

form find that it expands into the involuntary procedure, whether through legalizing

the latter or because of abuse of the permitted procedure.

In the Netherlands, Belgium, and Lichtenstein, physicians are legally

authorized, subject to certain conditions, to administer euthanasia. For the sake of

clarity, we note here that outside those jurisdictions, for a physician to administer

euthanasia would be first-degree murder, whether or not the patient had consented to

it.

29
Assisted suicide

Assisted suicide has the same goal as euthanasia: causing the death of a

person. The distinction resides in how that end is achieved. In PAS, a physician, at the

request of a competent patient, prescribes a lethal quantity of medication, intending

that the patient will use the chemicals to commit suicide. In short, in assisted suicide,

the person takes the death-inducing product; in euthanasia, another individual

administers it. Both are self-willed deaths. The former is self-willed and self-inflicted;

the latter is self-willed and other-inflicted. Although the means vary, the intention to

cause death is present in both cases.

Some will argue that agency is different in assisted suicide and euthanasia; in

the former, the physician is somewhat removed from the actual act. To further this

goal, two ethicists from Harvard Medical School in Boston, Massachusetts, USA,

have proposed strategies for limiting physician involvement in an active death-

causing role.8 It is, indeed, the case that patients provided with the necessary

medication have ultimate control over if, when, and how to proceed to use it; they

may change their mind and never resort to employing it. However, in prescribing the

means to commit suicide, the physician’s complicity in causing death is still present.

There are, however, some limits on that complicity, even in the jurisdictions where it

has been legalized. For instance, even supporters of PAS in those jurisdictions agree it

is unethical for physicians to raise the topic with individuals, as that might constitute

subtle coercion or undue influence, whether or not intended.

PAS has been decriminalized in Oregon, Washington State, Montana, and

Vermont, and absent a “selfish motive”, assisted suicide is not a crime in

Switzerland.9 Even in these jurisdictions, however, one cannot legitimately speak of a

“right” to suicide because no person has the obligation to assist in the suicide. Rather,

30
assisting suicide has been decriminalized for physicians in the American states listed

and for any person in Switzerland; that is, it is not a criminal offence for those who

comply with the applicable laws and regulations.

Terminal sedation and palliative sedation

A lethal injection can be classified as “fast euthanasia”. Deeply sedating the

patient and withholding food and fluids, with the primary intention of causing death,

is “slow euthanasia”. The use of “deep sedation” at the end of life has become a more

common practice in the last decade and has been the focus of controversy and

conflict, especially because of its probable abuse.

Certain terminology, such as “palliative terminal sedation”, creates confusion

between sedation that is not euthanasia and sedation that is euthanasia. It was used,

for example, by the Quebec Legislative Assembly in drafting a bill to legalize

euthanasia.10 We note that creating such confusion might constitute an intentional

strategy to promote the legalization of euthanasia. In the amended bill, the term

“palliative terminal sedation” was replaced by “continuous palliative sedation”, which

the patient must be told is irreversible, clearly indicating the legislature’s intention to

authorize “slow euthanasia”, although many people might not understand that is what

it means. The bill died on the order paper when a provincial election was called before

it was passed. Immediately after the election the bill was reintroduced at third reading

stage by unanimous consent of all parties and passed by a large majority. This new

law allowing euthanasia in Quebec, the only jurisdiction in North America to do so,

remains the focus of intense disagreement and is now being challenged as ultra vires

the constitutional jurisdiction of Quebec.

31
 “Palliative sedation”, which is relatively rarely indicated as an appropriate

medical treatment for dying people, is used when it is the only reasonable way to

control pain and suffering and is given with that intention. It is not euthanasia.

“Terminal sedation” refers to a situation in which the patient’s death is not imminent

and the patient is sedated with the primary intention of precipitating their death. This

is euthanasia. The terms palliative terminal sedation and continuous palliative

sedation confound these two ethically and legally different situations.

Euthanasia advocates have been arguing that we cannot distinguish the

intention with which these interventions are undertaken, and therefore, this distinction

is unworkable. But the circumstances in which such an intervention is used and its

precise nature allow us to do so. For instance, if a patient’s symptoms can be

controlled without sedation, yet they are sedated, and especially if the patient is not

otherwise dying and food and fluids are withheld with the intention of causing death,

this is clearly euthanasia. Needing to discern the intention with which an act is carried

out is not unusual. For instance, because intention is central to determining culpability

in criminal law, judges must do so on a daily basis. We note, also, that intention is

often central in determining the ethical and moral acceptability of conduct, in general.

Within the realm of decision-making in a medical context, withdrawal of

artificial hydration and nutrition has continued to be a very contentious issue in

situations in which persons are not competent to decide for themselves about

continuing or withdrawing this treatment. The questions raised include: When does its

withdrawal constitute allowing a person to die as the natural outcome of their disease

(when it is not euthanasia)? And when does its withdrawal constitute starving and

dehydrating a person to death (when it is euthanasia)?

32
Our key assumptions

In discussing an issue as contentious as euthanasia, which has a foundational

base in values as well as facts and knowledge, it is incumbent on us to identify our

underlying philosophical beliefs and assumptions. This will orient the reader to the

line of logic that links the ensuing arguments.

People undertaking an ethical analysis belong in one or other of two main

camps: principle-based (or deontological) ethics or utilitarian ethics. We belong to the

first group. We believe there exists a universal morality and that, at the very least,

there is significant intercultural agreement on core concepts of ethics. It is important

to recognize that agreement when it exists, because we should try to start our ethical

debates from where we agree, not from our disagreements. Doing so allows an

experience of a shared morality, which gives a different tone to both the debate and

our disagreements.

It is beyond the scope of this article to discuss in depth the putative origins of

this human moral sense. For religious people, it is to be found in their religious

beliefs. Perhaps it is a result of Darwinian natural selection and has come to be written

in our genetic code and reflected in our common neurobiological apparatus. Perhaps it

is a product of the powerful reasoning capabilities of Homo sapiens, culminating in a

rationalization process that recognizes the survival and other advantages of cultivating

virtues such as altruism and fairness over greed and injustice. Perhaps its origins will

forever elude us and we must be content with describing it through concepts such as

moral intuition. Perhaps it is some combination of all of these factors and others.

Regardless, it has often been said that even in secular societies, close to 100% of its

citizens adhere to moral codes, whether implicit (eg, the ethical “yuck” factor) or

explicit (eg, the Ten Commandments).

33
 As a consequence, we endorse the view that the practice of medicine is

necessarily constrained by moral absolutes. In other words, we categorically reject

moral relativism, the utilitarian view that what is right or wrong depends just on

weighing whether benefits outweigh risks and harms, and in particular, that this is

only a matter of personal judgment. Some things ought never to be done to patients by

their physicians. In relation to euthanasia, physician–philosopher Edmund Pellegrino

states it well: “Physicians must never kill. Nothing is more fundamental or

uncompromising”.11 We strongly agree, and this central tenet informs our entire line

of argument.

We believe that future generations looking back on the twenty-first century

euthanasia debate (which is taking place in most Western democracies) will see it as

the major values debate of the century and determinative of the most important

foundational values of the world they will have inherited.

Basic concepts related to euthanasia and PAS

The right to die

The “right to die” terminology is used in the euthanasia debate to propose

there is a right to have death inflicted. Death is inherent to the human body,

vulnerable and inexorably aging; death can be accelerated or temporarily delayed, but

never thwarted. The inevitability of death is an explicit, necessary, noncontingent, and

universalizable phenomenon true for all living beings. There is no “right to die”. In

contradistinction, there are fundamental human rights to “life, liberty and security of

the person”.

34
 Where there is a right, there is an obligation; therefore, were a “right to die” to

exist, a logical consequence would be that some other person or agent would have a

duty to inflict death (especially if the requisitioner were physically incapable of

accomplishing the act themselves). Pro-euthanasia advocates rely heavily on this line

of logic and have used it to impose responsibility for carrying out euthanasia onto the

medical profession.

The claim to a right to die must be distinguished from a “right to be allowed to

die”; for instance, by refusing life-support treatment. The right to permit the dying

process to unfold unimpeded flows from and is a consequence of persons’ exercise of

their right to inviolability, the right not to be touched without their informed consent.

It does not establish any right to die in the sense of a “right to be killed”.

A recent case from British Columbia, Carter v. Canada (Attorney

General),12 illustrates the arguments that emerge between those arguing for a right to

die (legalized euthanasia) and those opposing it. Gloria Taylor, a woman with

amyotrophic lateral sclerosis who was one of the plaintiffs, challenged the

constitutional validity of the prohibition on assisted suicide in the Canadian Criminal

Code.13 Suicide and attempted suicide used to be crimes under the code, but these

crimes were repealed by the Canadian Parliament in 1972. However, the crime of

assisting suicide was not repealed. The trial judge in the Carter case, Justice Lynn

Smith, considered the reasons for that repeal. She accepted that it was not done to

give a personal choice to die priority over “the state interest in protecting the lives of

citizens; rather, it was to recognize that attempted suicide did not mandate a legal

remedy”.12 With respect, we propose an alternative explanation: The designation of

those acts as crimes was abolished to try to save the lives of suicidal people. It was

35
hoped that if society removed the threat of possibly being charged with a criminal

offence, they and their families would be more likely to seek medical assistance.

In coming to her conclusions that PAS can be ethically acceptable and ought

to be legally allowed in certain circumstances, Justice Smith relied heavily on the fact

that it is no longer a crime to commit or attempt to commit suicide and asked, why,

then, is it a crime to assist it? “What is the difference between suicide and assisted

suicide that justifies making the one lawful and the other a crime, that justifies

allowing some this choice, while denying it to others?”12

The answer is that decriminalizing suicide and attempted suicide is intended to protect

life; decriminalizing assisted suicide does the opposite. As explained earlier,

intentions are often central in deciding what is and is not ethical.

Society tries to prevent suicide. Notwithstanding the influence of pro-

euthanasia advocates, the preponderant societal view is that suicide, at least outside

the context of terminal illness, must not be tolerated. Suicide is generally considered a

failure of sorts: the manifestation of inadequately treated depression, a lapse in

community support, a personal shortcoming, societal disgrace, or a combination

thereof. Even if in certain societies in ancient times suicide was not illegal, it was

generally frowned upon.14

Importantly, the decriminalization of suicide does not establish any right to die

by suicide. Furthermore, if there were such a right, we would have a duty not to treat

people who attempt suicide. In other words, if there were a right to choose suicide, it

would mean that we have correlative obligations (perhaps subject to certain

conditions such as ensuring the absence of coercion) not to prevent people from

making that choice. Hospital emergency rooms and health care professionals faced

36
with a patient who has attempted suicide do not, at present, act on that basis.

Psychiatrists who fail to take reasonable care that their patients do not commit suicide,

including by failing to order their involuntary hospitalization to prevent them

committing suicide, when a reasonably careful psychiatrist would not have failed to

do so, can be liable for medical malpractice, unprofessional conduct, and even, in

extreme cases, criminal negligence.

Another distinguishing feature between suicide and assisted suicide must be

underlined. Suicide is a solitary act carried out by an individual (usually in despair).

PAS is a social act in which medical personnel licensed and compensated by society

are involved in the termination of the life of a person. It asks not that we attempt to

preserve life, the normal role of medicine and the state, but that we accept and act

communally on a person’s judgment that his or her life is unworthy of continuance.

(We are indebted to Canadian bioethicist Dr Tom Koch for this particular formulation

of the issue.)

Autonomy

Advocates of euthanasia rely heavily on giving priority to the value of respect

for individuals’ rights to autonomy and self-determination. Respect for autonomy is

the first requirement listed in the principlism approach to biomedical ethics, known as

the “Georgetown mantra”, which strongly influenced the early development of

applied ethics in the 1980s.15 It refers to a person’s right to self-determination, to the

inherent right of individuals to make decisions based on their constructions of what is

good and right for themselves. The autonomous personal self is seen to rule supreme.

It washes over the relational self, the self that is in connection with others in the

37
family and community. Autonomy is often treated as an “uber” right trumping all

other rights. It renders moot many obligations, commitments, and considerations

beyond the risks, harms, and benefits to the individual involved. The inclination to

attribute primary importance to autonomy may be alluring at first glance; clearly, no

physician educated in today’s ethical zeitgeist (patient-centered, partnership-seeking,

and consent-venerating) would want to be seen to be violating someone’s autonomy

by disrespecting their right to make personal choices. That would smack of

paternalism or authoritarianism, which are seen by “progressives” as heinous wrongs.

The way in which respect for autonomy is implemented in practice and in law

is through the doctrine of informed consent. Among many requirements, it demands

that the patient be fully informed of all risks, harms, benefits, and potential benefits of

the proposed procedure and its reasonable alternatives. As a consequence, to obtain

legally valid informed consent to euthanasia, the patient must be offered fully

adequate palliative care. As well, the patient must be legally and factually mentally

competent, and their consent must be voluntary: free of coercion, duress, or undue

influence. We question whether these conditions can be fulfilled, at least with respect

to many terminally ill patients.

Individual autonomy and perspectives from the individual’s family

It is useful to consider the historical roots of individual autonomy and its

possible links to the movement to legalize euthanasia. The belief that one has the right

to die at the time, place, and in the conditions of one’s choosing is based on the

conviction that one owns one’s body and that one can do with it as one pleases. It is

an idea deeply rooted in the humanist worldview.

38
 The notion of a personal self emerged in the Renaissance, where it was

thought that the personal self could be worked on and perfected. It was quite distinct

from more ancient concepts of humans as part of a greater and unified whole. Pica

della Mirandola (quoted in Proctor 1988)16 captures the sentiment: “We have made

thee neither of heaven nor of earth, neither mortal nor immortal, so that with freedom

of choice and with honor, as though the maker and molder of thyself, thou mayest

fashion thyself in whatever shape thou shalt prefer.” It does not require a huge

conceptual leap to appreciate that if the self can be created, the process should be

reversible: self-making balanced with self-annihilation. Self-determinationism is a

type of solipsism discernible at the very core of most philosophical arguments in

favor of euthanasia.

The concept of autonomy can be problematized. It is, as ethicist Alfred Tauber

has suggested, two-faced.17 He describes two conceptions of autonomy: one that is

dependent on radical self-direction and human separateness and another that is other-

entwined and constitutive of social identities. He places interdependence,

interpersonal responsibility, and mutual trust as counterpoints to free choice. He

argues that both are necessary for society to thrive and for medicine to fulfill its moral

imperative. Autonomy is also being rethought by some feminist scholars through a

concept called “relational autonomy”.18 This recognizes that, hermits aside, we do not

live as solitary individuals but, rather, in a web of relationships that influence our

decisions, and that these must be taken into account in assessing whether or not our

decisions are autonomous. The role that respect for autonomy should play in relation

to the decision whether to legalize euthanasia must be examined not only from the

perspective of the patient but also from the perspective of the patient’s relations. In

the current debate, the latter have often been neglected.

39
 It is ethically necessary to consider the effects on a person’s loved ones of that

person’s decision to request euthanasia. We illustrate this by making reference to the

BBC television program “Coronation Street”, the longest-running television soap

opera in history. It recently focused on a character named Hayley Cropper. In a series

of episodes in early 2014, Hayley was diagnosed with pancreatic cancer and

subsequently resorted to suicide in the presence of her husband, Roy Cropper. The

producers of the show succeeded in plucking at heart strings and eliciting empathic

responses from the audience. The character had a complex personal narrative that

permitted one to appreciate why she might have wanted to hasten her own death: she

was a transsexual woman who feared reverting to her previous male identity as her

dying process progressed. The producers, always attuned to contemporary societal

issues, made sure to balance Hayley’s suffering with a reciprocal harm, wrought on

her husband Roy and another character, Fiona (Fiz) Brown. Roy became tormented

with guilt by association, and Fiz was seriously traumatized because she was deprived

of the opportunity to say goodbye to Hayley, her foster mother. The point made was

that self-willed death may be merciful to oneself and simultaneously cruel to others.

There is an essential reciprocity in human life. We are neither islands in the seas nor

autonomous, self-sufficient planets in the skies.

We must also examine the effect of legalizing euthanasia from the perspective

of physicians’ and other health care professionals’ autonomy with respect to freedom

of conscience and belief, and the effect it would have on institutions and society as a

whole. The overwhelming thrust of the euthanasia debate in the public square has

been at the level of individual persons who desire euthanasia. Although that

perspective is an essential consideration, it is not sufficient. Even if euthanasia could

be justified at the level of an individual person who wants it (a stance with which we

40
do not agree), the harm it would do to the institutions of medicine and law and to

important societal values, not just in the present but in the future, when euthanasia

might become the norm, means it cannot be justified.

Loss of autonomy, experienced or anticipated, is one of the reasons that might prompt

a patient to request death from their physician. Other reasons include pain, but it is not

the most important. Thankfully, modern medicine is, with few exceptions, effective at

relieving physical symptoms, particularly pain. These other sources of suffering are

largely in the psychosocial domain, as the recent annual report by Oregon’s Public

Health Division (released on January 28, 2014) demonstrates. During a 14-year period

(1998–2012), the three most frequently mentioned end-of-life concerns were loss of

autonomy (91.4%), decreasing ability to participate in activities that made life

enjoyable (88.9%), and loss of dignity (80.9%).19 A loss in bodily function is linked to

the fear of becoming a burden on loved ones and is often experienced as an assault on

human dignity. It is important to note that depression can represent either an

indication or a contraindication for euthanasia. A list of end-of-life concerns that can

be linked to requesting euthanasia is presented in Table 1.

41
 We turn now to another critically important value, respect for life, which, in

the context of euthanasia, is in conflict with respect for autonomy. In discussing

euthanasia, the one cannot be properly considered in isolation from the other.

Respect for human life

Respect for human life must be maintained at two levels: respect for each

individual human life and respect for human life in general. Even if it were correct, as

pro-euthanasia advocates argue, that when a competent adult person gives informed

consent to euthanasia there is no breach of respect for human life at the level of the

individual, there is still a breach of respect for human life in general. If euthanasia is

involved, how one person dies affects more than just that person; it affects how we all

will die.

42
 Respect for life is implemented through establishing a right to life. We return

to the trial judgment in the Carter case because it illustrates how such a right can be

distorted and co-opted in the service of legalizing PAS or even euthanasia. In

applying the right to life in section 7 of the Canadian Charter of Rights and

Freedoms20 to Ms Taylor’s situation, Justice Smith says:

[T]he [Criminal Code] legislation [prohibiting assisted suicide] affects

her right to life because it may shorten her life. Ms Taylor’s reduced

lifespan would occur if she concludes that she needs to take her own

life while she is still physically able to do so, at an earlier date than she

would find necessary if she could be assisted.12

What is astonishing is the novel, to say the least, way in which Justice Smith

constructs a breach of Ms Taylor’s Charter right to life. In effect, Justice Smith’s

reasoning converts the right to life to a right to death by PAS or euthanasia. Justice

Smith’s judgment was overturned by a two to one majority in the British Columbia

Court of Appeal, as contrary to a Supreme Court of Canada precedent ruling that the

prohibition of assisted suicide is constitutionally valid.21 It is now on appeal to the

Supreme Court of Canada; we note its liberty to override its previous precedents.

Obfuscations and the main arguments of proponents and opponents

Proponents of euthanasia often use rhetorical devices to foster agreement with

their stance by making it more palatable. One of these is to eliminate the use of words

that have a negative emotional valance. As mentioned previously, “suicide” has been

a taboo for many cultures and across time. Some commentators have described

concepts such as suicide clusters, suicidal contagion, and suicide scripting; none of

these are considered beneficial to society. As a consequence, there have been efforts

43
at replacing the terminology of assisted suicide with assisted dying. A former editor of

the New England Journal of Medicine, Marcia Angell, has stated that the latter

expression is more appropriate because it describes someone “who is near death from

natural causes anyway while the former refers to something occurring in someone

with a normal life expectancy”.22 We doubt that she was actually meaning to imply

that human lives have less intrinsic worth as persons approach death; however, that

interpretation is logical and inevitable.

Another strategy to whitewash “death talk” is to figuratively wrap it within the

white coat of medicine. Cloaking these acts in medical terms softens them and confers

legitimacy. This has spawned a host of euphemisms such as “medically assisted

death”, “medical-aid-in-dying”, and “death with dignity”. After all, we all want good

medical care when we are dying. A strategy that may escape scrutiny is to link

assisted suicide with physicians; that is, PAS. However, assisted suicide and

euthanasia are not necessarily glued to physicians. Nurses could perform these

procedures, although most recoil at the prospect. In theory, almost anyone (ambulance

drivers, veterinarians, pharmacists, lawyers) could be empowered and trained to

euthanize. We have argued elsewhere that if society is going to legalize euthanasia

(which we oppose it doing), it could equip itself with a new occupation of

euthanology,23 thereby relieving physicians of having to contravene their ancient

guiding principle of primum non nocere.

One must also be wary of euphemisms because they dull our moral intuitions

and emotional responses that warn us of unethical conduct. In our world of desktops,

laptops, and smartphones, where one’s existence is proclaimed and validated on

computer screens and intersubjectivity is channelled in cyberspace, we would not be

surprised to see some enterprising euthanologist of the future advertise a gentle

44
“logging-off”. Although fanciful, this prediction is well aligned with a conception of

the world that views persons as reducible to bodies with complex networks of

neurological circuits wherein the entire range of human experiences can be created,

recorded, interpreted, and terminated.

This conception of human existence can also breed rather extreme points of

view, such as the one that considers the failing body as “unwanted life support”.

David Shaw has suggested that, “if a patient is mentally competent and wants to die,

his body itself constitutes unwarranted life support unfairly prolonging his or her

mental life”.24

Many current attitudes and values could affect how terminally ill, dying, and

vulnerable people are treated. For example, if materialism and consumerism are

priority values, euthanasia fits with the idea that, as one pro-euthanasia Australian

politician put it: “When you are past your ‘use by’ or ‘best before’ date, you should be

checked out as quickly, cheaply and efficiently as possible.” But we are not products

to be checked out of the supermarket of life. As this shows, some who advocate in

favor of euthanasia resort to intense reductionism in buttressing their arguments. If

one thinks of a human being as having an essence comprised of more than bodily

tissues, then the intellectual, emotional, and social barriers to euthanasia come to the

fore.

Euphemizing euthanasia through choice of language is not the only “legalizing

euthanasia through confusion” strategy.25 Another is the “no difference” argument.

The reasoning goes as follows: refusals of treatment that result in a shortening of the

patient’s life are ethical and legal; this is tantamount to recognizing a right to die.

Euthanasia is no different from them, and it’s just another way to implement the right

to die. Therefore, if we are to act consistently, that too should be seen as ethical and

45
legal. The further, related, argument is that euthanasia is simply another form of

medical treatment. However, as explained previously, the right to refuse treatment is

not based on a right to die, and both the intention of the physician and the causation of

death are radically different in those cases compared with euthanasia.

The main arguments in favor of and in opposition to euthanasia are presented

in Table 2. Prominent on the yea side are the autonomy principle and the belief that

putting an end to suffering through euthanasia is merciful and justifies euthanasia.

Prominent on the nay side are the corrosive consequences for upholding society’s

respect for life, the risks of abuse of vulnerable people, and the corruption of the

physician’s role in the healing process.

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47
The role of the physician: “doctor as healer”

An absolute barrier to physicians becoming involved with acts that

intentionally inflict death is that doing so would be incompatible with their healer

role. This statement requires unpacking. The concept of “healing” is a challenging

one to define, and it is nearly impossible to explain it in reductionist and objectivist

terms. By its very nature, healing is holistic and intersubjective. Balfour Mount, the

physician who created the first palliative care unit in North America, has defined it as

“a relational process involving movement towards an experience of integrity and

wholeness”.26 Such a description does not entirely clarify the situation; Dr Mount

once admitted: “When I try to explain what is healing I invariably end up invoking

notions such as ‘wholeness’ or ‘soul’ and, in the process, I often lose the attention of

my colleagues who have been enculturated in the positivist paradigm of scientific

methodology.” A formulation that may provide a more robust understanding of

medicine’s healing mandate is the notion that healing amounts to caring for the whole

person.

The historical roots that link medicine to healing run deep. In ancient times, a

physician’s training was represented as an initiation into sacred rites: Asclepius was

the healing god. Healers have existed across time and cultures; this is an important

focus of interest for medical anthropologists. The Old French and Anglo-Norman

word “fisicien” derives from “fisique”, which denoted a practitioner of the art of

healing. Healing is inseparable from the need of humans to cope with the bafflement,

fear, and suffering brought on by sickness. The problems of sickness, accidents,

unjustness, and evil are all central concerns of professions with a pastoral function:

the ministry and medicine.

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 Some physicians may attempt to distance themselves and their clinical method

from any priestly role and religion as a whole. That resistance is understandable to

some extent. However, it has been argued that physicians, by the nature of the clinical

encounter, even if they are not necessarily metaphorical shepherds tending their

sheep, cannot be considered to be morally neutral technicians.27 A fascinating

commentary on this aspect of medicine comes from an unexpected source. The

renowned Canadian novelist Robertson Davies, a self-declared expert on magic, in

describing the characteristics of a physician, once stated to a medical audience at

Johns Hopkins University:

[…] to the wretch who sits in the chair on the other side of your desk.

You look like a god […] the detection and identification of gods in

modern life is mine, and I assure you that you look like a god.28

We are not trying to suggest that physicians are priests, let alone gods; we are merely

pointing out that, whether or not we are religious, the healing function requires

attention to notions of transcendence, and if they have them, patients’ theistic beliefs

and their spiritual life. Not surprisingly, indeed insightfully, healing has been

described as the relief of “soul sickness”.29 The late Dame Cicely Saunders, founder

of the modern hospice movement, has equated it to recognizing, reaching, and

alleviating “soul pain”. Although it is beyond the scope of this article to consider the

full breadth of healing as a human phenomenon, a few additional points are in order.

Healing is a journey, rather than a destination, and it is a process more than an

epiphany. Recent work by Mount and his collaborators has attempted to characterize

healing by contrasting it with wounding. On a quality-of-life continuum, being in a

healed state is at a pole marked by an experience of wholeness and personal integrity.

Being wounded is situated at the opposite pole and represents an experience of

49
suffering and anguish. Healing is associated with the following perspectives: a sense

of connection to self, others, and a phenomenal world (ie, a world experienced

through the senses); an ability to derive meaning in the context of suffering; a

capacity to find peace in the present moment; a nonadversarial connection to the

disease process; and the ability to relinquish the need for control. Wounding is a

movement in opposite directions. Suffering is fundamentally a sense of one’s own

disintegration, of loss of control to prevent that, and an experience of

meaninglessness.30 By counteracting those perceptions, a person can be helped on a

healing trajectory, even as death approaches. Healing interventions are always

possible. One can die healed. As a consequence, the phrase, “There is nothing more

that I can do for you,” has no place in medicine.

What does healing look like at the bedside? The following characteristics are

frequently emphasized. Healing requires recognizing, listening to, and responding to a

patient’s story, especially listening for trauma, shame, suffering, lament, and listening

in a way that generates “earned trust”: “Trust me because I will show that you can

trust me.” It occurs in the moment, in the present tense, in a series of “nows”. There

needs to be a profound recognition of and an attempt to mitigate the power

differential. There is a duty to nurture hope, a deep sort of hope, and one that is

understood as “having agency to discover meaning”.31 Hope has been described as

“the oxygen of the human spirit. Without it, our spirit dies. With it we can overcome

even seemingly insurmountable obstacles.”32

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Alternatives to euthanasia

There are two great traditions in medicine: the prolongation of life and the

relief of suffering. The concept of suffering, the fact that it is an affliction of whole

persons, rather than bodies only, was explicated several decades ago by the American

physician Eric Cassel in his seminal paper: “The Nature of Suffering and the Goals of

Medicine.”33 This understanding represents one of the central tenets of palliative care

medicine. The provision of high-quality care by individuals who share in this belief

and are able to act to address the full range of human suffering is the most important

goal with respect to terminally ill patients. It also constitutes the obvious and

necessary alternative to euthanasia.

A specific approach to palliative care, with conceptual anchors in the concept

of healing, has recently been described and used by Canadian psychiatrist Harvey

Max Chochinov and colleagues; it is called “dignity therapy”.34 Although we prefer

the original term, “dignity-conserving care”, because it implies somewhat more

modest goals and suggests less of a transfer of agency from patient to physician, this

approach holds great promise for assisting patients at the end of life. It provides an

entry for a deep exploration of dignity: How does the individual patient conceive of

it? How is it threatened? How does it link to vulnerability or a sense of “control”?

Where does one get the idea that we are ever in control? It is focused on issues such

as “intimate dependencies” (eg, eating, bathing, and toileting) and “role preservation”.

Chochinov has described one’s social roles and their associated responsibilities as

“the bricks and mortar” of self.34 The therapeutic approach described aims to preserve

persons’ inherent dignity, in part by helping them to see that their intimate

dependencies can be attended to without their losing self-respect and that they can

continue to play meaningful roles.

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Consequences

A major disagreement between euthanasia advocates and opponents revolves

around the existence of slippery slopes. There are two types: the logical slippery

slope, the extension of the circumstances in which euthanasia may be legally used,

and the practical slippery slope, its abuse (see Table 3). The evidence during the last

decade demonstrates that neither slope can be avoided.35,36 For example, although

access to euthanasia in the Netherlands has never required people to be terminally ill,

since its introduction it has been extended to include people with mental, but not

physical, illness, as well as to newborns with disabilities and older children. In

Belgium, euthanasia has recently been extended to children, it is being considered

whether to do the same for people with dementia, and organs are being taken from

euthanized people for transplantation.37 The logical and practical slippery slopes are

unavoidable because once we cross the clear line that we must not intentionally kill

another human being, there is no logical stopping point.

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 When euthanasia is first legalized, the usual justification for stepping over the

“do not kill” line is a conjunctive one composed of respect for individual autonomy

and the relief of suffering. This justification is taken as both necessary and sufficient

for euthanasia. But as people and physicians become accustomed to euthanasia, the

question arises, “Why not just relief of suffering or respect for autonomy alone?” and

they become alternative justifications.

As a lone justification, relief of suffering allows euthanasia of those unable to

consent for themselves according to this reasoning: If allowing euthanasia is to do

good to those mentally competent people who suffer, denying it to suffering people

unable to consent for themselves is wrong; it is discriminating against them on the

53
basis of mental handicap. So, suffering people with dementia or newborns with

disabilities should have access to euthanasia.

If one owns one’s own life, and no one else has the right to interfere with what

one decides for oneself in that regard (as pro-euthanasia advocates claim), then

respect for the person’s autonomy as a sufficient justification means that the person

need not be suffering to access euthanasia. That approach is manifested in the

proposal in the Netherlands that euthanasia should be available to those “over 70 and

tired of life”.38

Once the initial justification for euthanasia is expanded, the question arises,

“Why not some other justification, for instance, saving on health care costs, especially

with an aging population?” Now, in stark contrast to the past when saving health care

costs through euthanasia was unspeakable, it is a consideration being raised.

Familiarity with inflicting death causes us to lose the awesomeness of what

euthanasia entails; namely, inflicting death. The same is true in making euthanasia a

medical act. And both familiarity with inflicting death and making euthanasia a

medical act make its extension, and probably abuse, much more likely, indeed, we

believe inevitable, were it to be legalized. We need to stay firmly behind the clear line

that establishes that we must not intentionally kill one another.

Those most at risk from the abuse of euthanasia are vulnerable people: those

who are old and frail or people with mental or physical disabilities. We have

obligations to protect them, and euthanasia does the opposite, it places them in

danger. We need, also, to consider the cumulative effect of how we treat vulnerable

people. What would be the effect of that on the shared values that bind us as a society

and in setting its “ethical tone”? As one of us (MAS) has repeatedly pointed out, we

54
should not judge the ethical tone of a society by how it treats its strongest, most

privileged, most powerful members, but rather by how it treats its weakest, most

vulnerable and most in need. Dying people belong to the latter group.

Among the most dangerous aspects of legalizing euthanasia are the unintended

boomerang effects it will have on the medical profession. The concept of

“unanticipated consequences of purposive social action” is a well-described

phenomenon in sociology.39 In his classic paper, American sociologist Robert Merton

distinguishes between the consequences of purposive actions that are exclusively the

result of the action and those, unpredictable and often unintended, that are mediated

by social structures, changing conditions, chance, and error. For example, with respect

to euthanasia, there is really no guarantee that the legal and administrative policies

erected today, even if currently they functioned as intended, which is doubtful, will be

as effective in a different cultural context decades hence.

Then there are the insidious changes induced by the force of habit: the

unexamined and autonomic modes of human behavior. How will the legitimatization

of euthanasia and its insertion in the everyday professional vernacular and practice

alter the ethos of medicine? The risks are of a grave nature and are immeasurable.

How will the involvement of physicians in inflicting death affect their thinking,

decisions, and day-to-day practice? Given that euthanasia may be routinized and

expedient, there is a distinct possibility that death will become trivialized and that

avenues for dignity-preserving care will remain unexplored. What are the potential

corrosive effects on hospitals of accepting the language of euthanasia and in

implementing that mandate? The language we use not only reflects reality but

constructs reality. As German philosopher Martin Heidegger has said, “Language is

the house of Being. In its home man dwells”.40 One can imagine that “H”, currently a

55
symbol of hospice and hope, will become conflated with an “H” that stands for

hollowness and hastened death. We have little doubt that the slippery slopes include a

language of abandonment, generating medical practices that will vitiate hope, and a

profession that will struggle to identify a true north on its moral compass.

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