Part 2 Euthanasia


Chapter 8  Euthanasia: Common Arguments For and Against


Whether or not to legalize euthanasia is, I believe, the wrong question. As I stated in the Introduction to this book, I believe that concentration on the narrow euthanasia debate detracts energy, resources and funding from developing and enhancing hospice care. In my opinion, a request for euthanasia is primarily a response to health care and social service systems that do not meet the needs of most people who are dying. At the same time I believe people do need an overview of the euthanasia debate to help them clarify their own thoughts.


When Choices was published in 1986 I received many comments about the book and its objective presentation on the choices available to people who had a terminal or life-threatening illness. One of the most encouraging comments was about the chapter on euthanasia and its unemotional presentation of both sides of the debate. Most of that chapter appears below as an overview of the euthanasia debate.


Euthanasia, like abortion, capital punishment, war, suicide, and medical experimentation, is a very contentious and emotional issue. People who hold strong feelings either for or against euthanasia will not change their opinions based on anything in this chapter. If, however, people with strong views for or against euthanasia can read this chapter and find arguments to support their beliefs, then I have succeeded in presenting the issues fairly. If people who are undecided can find this information useful in helping them make up their mind than my purpose will be achieved.


Euthanasia stems from the Greek words eu (well) and thanatos (death). It refers to a painless and happy death. In modern usage it generally refers to the deliberate ending of someone else's life for compassionate reasons, when people are terminally ill or their suffering has become unbearable. Proponents of euthanasia argue that because of modern medical technology, it has become very difficult to die a natural death. The majority of North Americans die in hospitals where it is increasingly difficult to die as a direct result of a disease. Medical intervention, it is argued, prolongs death unnecessarily.


Euthanasia has often been broken up into two main divisions:


1. Active euthanasia involves someone, other than the persons who have a terminal, chronic or life-threatening illness, deliberately killing those persons (with or without their voluntary request) by giving them a lethal dose of drugs, or ending their perceived suffering in any other direct way. Euthanasia by such violent acts as shooting or strangulation are considered "mercy killing" and are not seen as appropriate forms of killing by most people who approve of active euthanasia.


2. The right to refuse treatments (also called passive euthanasia by some) is legal in Canada in many situations. It involves someone, other than the person dying, allowing that person, with or without their voluntary consent, not to begin or continue life-sustaining treatment. These life-sustaining treatments may include life-support machines, artificial feedings or hydration, or active treatments aimed at curing a disease. For example Jehovah Witnesses have the legal right in Canada to refuse blood transfusions that may save their lives.


The right to refuse treatment has been referred to as euthanasia by omission while active euthanasia is euthanasia by commission of a direct action. Often, the right to refuse treatment is requested directly by the person dying, either verbally or through a written document such as a Living Will.


The right to refuse treatment, when voluntarily requested by a patient, grants patients legal autonomy over medical decisions related to their care. The patient's legal rights blur, however, when health caregivers, family members or community members question a  patient's mental competence to make these decisions. The legal questions become even more difficult when a patient is in some form of a coma, in a permanent vegetative state or experiencing dementia.


The argument against the distinction between right to refuse treatment and active euthanasia is that, whether you directly or indirectly cause someone's death, your intention and the resulting death are the same. Some argue that a doctor who allows a patient to refuse intravenous feedings, medications, surgery or a resuscitator, gets the same result as a doctor who gives a lethal dose of medication. This ethical and legal debate about whether or not active and passive euthanasia are morally indistinguishable will not be resolved quickly.


Reasons Some People Want Euthanasia


Euthanasia on the grounds of intractable or unbearable pain is becoming less of an issue. Pain control techniques are so effective that over 90 percent of people can be pain free and mentally alert until shortly before their death. However, many patients still suffer needless pain because of inadequate pain management by their doctors. The more pain control techniques are understood by doctors, the less the cry for euthanasia. For people who still have unbearable pain, medications can be given to put the person in a drug-induced coma to relieve physical suffering. If the person remains alive for some time they are brought out of the coma every few days to see if the pain is better controlled and they can return to being more alert.


The early 20th century American feminist Carrie Chapman Catt wrote that "no grief, pain, misfortune or `broken heart' is an excuse for cutting off one's life while any power of service remains." She committed suicide during the terminal stages of her cancer after she decided she could no longer serve.


The argument for a quality of life is very important to those who support euthanasia. The basis of this argument is that individuals have the right to decide when their lives no longer have a quality that they want to live with. Defining "quality of life" is very difficult and it is unique to each individual. One person who is terminally ill, bedridden, and dependent on others will choose to live as fully as possible while someone else may ask to die.


Examining someone's quality of life can serve another purpose, however. If we know that some people are uncomfortable with their quality of life we can determine in what areas their lives can be improved or supported through such services as hospice care, increased visits by family and friends, and a continuing environment of support that shows the person they are valued members of their community.


A last consideration for people who may choose euthanasia is financial. People who are dying worry a great deal about their families. They do not want to be an emotional burden, nor a financial one. The cost of dying in North America can be very high indeed. Studies have concluded that up to 80 percent of an American's medical costs are spent in the last year of their life. Canadians face different costs especially if they wish to live at home until they die. Provincial medical plans do not cover all expenses, e.g. round the clock home nursing care. Some people do not have drug plans nor do they have the resources to permit family members to take a leave of absence from work to care for them. Some people argue that euthanasia would allow someone to die before the horrendous costs of prolonging life bankrupts them or emotionally exhausts them and their families. This argument is an indictment of our society's inability to deal with this very real problem, and as such, it is one of the saddest arguments for euthanasia.


The Right to Die


There is a whole field of study called Bio-ethics that began around 1970. This scientific and philosophically-based field examines issues in medicine that are ethically, legally and/or morally contentious.


The right to die has legal foundation. A person in North America can legally commit suicide. This was not always true and at one time if someone failed a suicide attempt he or she was charged with an offense. It is illegal, however, to help someone commit suicide, and that being the case, euthanasia is illegal in North America. Instances of active euthanasia have led to jail terms but the majority of recorded cases have led to probation or dismissals.


The question of the right to die becomes dangerously complicated when the person dying is unable to express her or his own wishes: a person in an irreversible coma, a child severely handicapped at birth, a person who is senile.


A Handicapped Child at Birth


Often, when the ethics and morals of euthanasia are argued, the case of a child born with Down's Syndrome or another genetic disability is raised. I separate this issue completely from the euthanasia debate because people with handicaps are generally not terminally ill as a result of their handicaps.


For example, Down's Syndrome or Spina Bifida are not terminal illnesses nor are many of the other disabilities that children can be born with. We cannot realistically evaluate children's lives twenty years from now so the best guideline seems to be; if "normal" children receive special care or corrective surgery for a congested heart, then disabled children should receive the same consideration, as if their handicap did not exist. If the condition is such that treatment would prolong a painful existence then decisions about treatment can be made on those grounds, not on the issue of the children's disability. People live very productive and happy lives with handicaps, and, therefore should not be denied other treatments because of their disability.


In cases where the disabilities are extensive, consideration must first be given to the family. If they wish their child to be treated then their wishes should be accepted. If they wish their child not to be treated then the decisions should include the advice of an impartial committee of medical and social service personnel so that the child is given every benefit of the doubt.


An issue that must be faced is the financial, emotional and physical toll that having a disabled child may have on a family. It is an indictment of our society if disabled children are permitted to die because there are insufficient financial and emotional support systems available to assist families. The issue is not the right to die for disabled children, but the need for sufficient resources to assist the millions of North Americans who have a disability.


Committing Suicide


Many people who argue in favour of euthanasia believe that if competent adults with a terminal illness wish to end their lives they should have the right to commit suicide (which is legal in Canada) or seek the help of someone who would not be liable for such assistance (illegal at present).


Some people actually plan for this event by saving prescription drugs. They save medications which they believe they can take when they no longer want to live with a terminal illness. This practice gives them confidence in their ability to maintain control over their own lives and control over the timing of their deaths. They worry about a painful or long-suffering death or an undignified old age.


The danger in using drugs and other methods to commit suicide is that many people fail in their suicide attempts and may end up worse off. The book Final Exit was published to help minimize the dangers of unsuccessful suicides but controversies continue about the various medications, dosages and the use of plastic bags recommended in the book. People may use out-of-date drugs or panic if their attempt does not go as they expect.


Arguments For and Against Euthanasia

Pain


1. Against: Euthanasia, on grounds of overwhelming pain, is no longer necessary because of modern day pain and symptom control. The arrival of palliative care programs, which give people physical, emotional, spiritual and informational support when they are dying, negates the need for euthanasia.


For: Hospice care is not available to most Canadians at present. Even if it was universally available, hospice care is not an alternative for everyone. Some people may choose to die earlier even when their pain is controlled. They may prefer not to become dependent on others or want to avoid the further deterioration of their physical and mental abilities.


Religious Grounds


2. Against: Euthanasia allows people to play God. It goes against our religious beliefs. Human life is sacred. Euthanasia is, therefore, murder.


For: The religious argument holds true for all those who strongly believe in it. Supporters of euthanasia argue that some opposed to euthanasia are inconsistent in their religious views on the sanctity of life as they support capital punishment or waging wars (as in the Persian Gulf War of 1991). This inconsistency allows some forms of `murder' but not others. Different religions have different views. For example, Pope Pius XII (1939-1958) distinguished between ordinary and extraordinary measures in prolonging life. Ordinary means whatever patients can obtain and undergo without imposing an excessive burden on themselves or others. So in some circumstances, passive euthanasia through omission of treatment is theologically acceptable in the Roman Catholic Church.


The religious argument is also not acceptable to people who do not believe in a traditional theology, whether or not they personally believe in God.


Nazi Germany Genocide


3. Against: If euthanasia were allowed on some grounds it will expand to other areas, e.g., legal euthanasia would eventually lead to recommendations to kill old people who are no longer competent or productive. Legal euthanasia would permit genocide like that in Nazi Germany.


Wolf Wolfensberger in his 1981 article describes this more fully. "The euthanasia program originated in Germany within the culture of medicine, modern intellectualism, academicism, and scientism. The program began not because it was German, or even Nazi, but because it was a phenomenon of western science in general. The explicit basis for euthanasia in Germany was described in Binding and Hoche's original work (1920, 1975), almost certainly before they were aware of Hitler. This was 13 years before Hitler came to power and twenty years before the Nazi euthanasia programs actually began....Initially selected for extermination were people in various institutions who had more severe physical or mental handicaps, e.g., those with severe handicaps in: mental retardation, mental disorders, tuberculosis, chronic illness, cerebral palsy, and epilepsy. However, with the quick and easy success of the early phase of the program, and the fact that a death-making apparatus had been structured, the criteria for inclusion broadened rapidly in four directions. These directions included individuals such as: (a) the less severely afflicted; (b) those who were physically atypical but not necessarily impaired (e.g., dwarfs); (c) those suspected of genetic and racial taints; and, (d) those who were devalued entirely for their social identities, e.g. gypsies. In time, people were categorized into these groups if they had behaviour problems or enuresis, odd-shaped ears, or, very dark eyes, hair or complexion. In fact, the authorities on the Nazi genocide emphasize repeatedly that the killing of the Jews evolved out of the desensitization, legitimization, personnel preparation and equipment development associated with the killing of handicapped people." (p. 1-2)


This German genocide might take several generations to occur in Canada if euthanasia was legalized or it might occur more quickly than we would like to admit. Our society already devalues the lives of people with disabilities, poor people, old people, and other people often discriminated against in our health care system. Legalized euthanasia would be just an extension of how we devalue people now. The answer is to change our values, not kill the victims of our societal values.


For: Such concerns are real and important and need to be considered when examining any possible legislative changes. There are important differences between Nazi Germany in the 1930s and North America in the 1990s:


(a) Nazi Germany was a homogeneous society; North America is not. Any move to legalize the active killing of incompetent people would be politically unacceptable. Lobbying groups from across economic, cultural and religious lines would rise as one voice against such a horrendous policy.


(b) The Nazis' genocide program, based on racial, economic and cultural bias, permitted the society to judge the value of someone's life. Euthanasia supporters believe in individuals deciding for themselves what is best. They encourage people to write down their wishes before a time when they may be unable to communicate (i.e. in an irreversible coma). Individuals, not society, determine the value of their own lives.


(c) A person who is dying is not indifferent to life, but rather, can be respectful of life and respectful of a humane death. For those who believe in an afterlife, death does not terminate life; it allows a person to move on to another level of living.


Depression/Burden


4. Against: Those who choose euthanasia may do so while depressed, in despair or in pain. Family members who do not love the person, or who wish to inherit may encourage someone to decide upon euthanasia "for the good of the family." We are socialized to want certain things. Can you imagine 50 years ago anyone saying they wanted to go to a nursing home? Many people say it now because they do not want to be a burden to their family. "Being a burden" is a modern concept that encourages premature death, and if euthanasia was legal premature death would be further encouraged.


For: We do not need euthanasia laws to encourage unscrupulous behaviour by someone's family. It is unfortunately happening today outside the euthanasia debate. Proponents of euthanasia agree that:


(a) the decision to end life must be the person's own and in his own hands (preferably written) and expressed over a period of time.


(b) the decision should never be carried out during a time of depression or despair.


(c) pain and symptom control, or the lack of it, should be double checked to make sure it is not the reason someone wants to end their life.


(d) a person's social role and relationships should be taken into account so that survivors understand the person's wishes.


Incorrect Prognosis


5. Against: Euthanasia may end a life prematurely if the doctors are incorrect in their prognosis. There is always the hope that a cure may be found for someone with a terminal illness.


For: Any decision that someone has a terminal illness should be verified by a second or third opinion. Mistakes may be made but we make many more deadly mistakes at present through over-medication of patients and unnecessary surgery.


For a cure to be used by a patient it must go through years of tests, analysis, government approval and acceptance by the medical establishment. Information from the doctor and various support associations will indicate the likelihood of a cure being available in the patient's lifetime.


Legality


6. Against: Euthanasia is illegal and therefore the debate has no merit; as a result, the law discourages individuals from taking matters into their own hands.


For: Passive euthanasia is legal under certain circumstances and may depend upon the patient's and family's expressed wishes. Laws do change, so what is illegal one day becomes legal by the vote of our representatives the next day. In Canada, capital punishment was legal for a time, then became illegal. Now we have periodic debates to change it back again. Laws only reflect what we want them to.


Over 40 American states have living will legislation that permits passive euthanasia under very specific circumstances. In March, 1986, the American Medical Association's Judicial Council issued a major opinion stating that it is ethically permissable for physicians to withhold all life-promoting treatment, including artificial nutrition and hydration, from patients who are in irreversible comas or who have terminal illnesses. In Canada, do-not-resuscitate orders were agreed upon by the Canadian Medical Association, the Canadian Nurses Association, the Canadian Hospital Association, the Canadian Bar Association, the Catholic Health Association of Canada, and the Law Reform Commission of Canada. They agreed upon a joint statement on terminal illness and a protocol for health professionals regarding resuscitative intervention.


The Hippocratic Oath


7. Against: Euthanasia goes against the Hippocratic Oath which clearly states: "I will never give a deadly drug to anyone, if asked for, nor will I make a suggestion to this effect."


For: The Hippocratic Oath was modified in 1948 by the General Assembly of the World Medical Associations and in 1949 in the International Code of Medical Ethics. It appeared that most doctors did not support euthanasia but more emphasis was put on permitting doctors to choose between relieving suffering over the prolonging and protecting of life in cases of terminal illness (as described in the Hippocratic Oath). If giving effective pain control may shorten a life of someone with a terminal illness it is considered ethical to do so. [Death as a result of medication to manage pain is sometimes referred to as passive euthanasia.]


Suffering


8. Against: People in pain may still offer us much through their ideas, perspectives, and personal histories. How much have we learned as a society from people with terminal illnesses?  At some point people who are dying accept their fate and give us their insights into life and dying. Much valuable family history and caring go on during this time. Effective pain and symptom control can make this special time productive and will give many memories to help the survivors with their grieving. We cannot end all suffering in the world. People have suffered through wars, the depression, the death of loved ones and faced the loss of some of their dreams. This form of suffering (grief if you like) should not be stopped during any part of our lifetime otherwise we lose the wisdom that such suffering gives us and others. People do not need to suffer unbearable physical pain but we should not end their emotional and spiritual suffering through euthanasia; we must support, love and be with them through their suffering as we do for any of our family and friends who are growing through grief and sorrow earlier in their lives.


For: Proponents of euthanasia often argue that a society will end a sick animal's life but will force humans to suffer needlessly. Their central argument is that individuals must decide for themselves if they wish to prolong their life. People have suffered and learned a great deal in their lives. Perhaps they would now prefer to avoid that last period of suffering and waiting for their deaths. We should provide them with the support they need to make that decision for themselves.


Age and Disability


9. Against: It is wrong to allow death by euthanasia, especially for elderly people and those with disabilities. They have so much to offer us. We have not treated enough of them with the respect and dignity they deserve nor have we learned enough from them. Their desire to die prematurely is an indictment of us, not a reason for euthanasia.


For: Senior citizens and people with disabilities ought to have earned our respect and be permitted to die when they choose. They have made thousands of decisions and many have lived through wars, hunger, great losses and hardships. They, better than anyone, should know when and how they wish to die.


Complexity


10. Against: The risks of legalizing euthanasia are too great to the overall population. The issue is extremely complex and the situations under which decisions may be made are too varied to write a practical law that will protect people under all situations.


For: Some people argue that individuals have the right to decide when and how they will die. If they can find someone (preferably a doctor) who will help them, that person should not be prosecuted. Laws are made everyday around very complex issues. In the Netherlands, effective legislation has been drafted to ensure that individuals have the right to choose, or not to choose, euthanasia with the assistance of a doctor under very strict guidelines established by the Dutch Medical Association and the Dutch Pharmacists' Association.


Passive Euthanasia


11. Against: Some people agree with passive euthanasia but they remain opposed to active euthanasia since the latter involves people in the direct killing of others with a terminal illness, even if these dying people have requested the help of someone to end their lives.


For: Once the decision to end life is made, there is no moral difference between withholding treatment and giving a lethal dose of medication.


Refusing Treatment


12. Against: Since we have the right to refuse treatment, legalizing euthanasia is unnecessary. People can just die by refusing life-saving treatments.


For: People can refuse treatment or commit suicide but refusing treatment can be very difficult when they, alone, are challenging the medical staff of a hospital. Refusing treatment is very difficult: in emergency situations, in situations involving children or incompetent adults, if the patients are unable to communicate, or once they are on life-support systems. Suicide is difficult to do successfully without expert advice and assistance.



[Report of the Special Senate Committee on Euthanasia and Assisted Suicide


In June 1995, The Special Senate Committee released its report after over a year of hearings with people and organizations both in favor of, and opposed to, euthanasia and assisted suicide.  This most exhaustive study of the issue heard almost every conceivable argument on both sides of the issue and the briefs presented to the committee are well worth reading for people who truly want to get an overall picture of this life-and-death debate.


The committee's recommendations do not meet all the needs of either those in favor of euthanasia and assisted suicide or those opposed.  The senators aim of compromise resulted in recommendations that are logically inconsistent and incoherent.  Throughout their deliberations, however, they became increasing aware of the need for more informal and formal palliative care and their recommendations will, hopefully, result in some political action.


I have reproduced the committee's complete set of recommendations in the order they were published (pages ix-xi) to further the discussion about palliative care, euthanasia and assisted suicide in Canada.  The government of Canada has said that it would bring the issue before the House of Commons during its first term of office so the debate will continue and decisions that will literally affect the lives and deaths of over 100,000 Canadians a year will be made shortly.


Palliative CareThe Committee recommends:


governments make palliative care programs a top priority in the restructuring of the health care system.

the development and implementation of national guidelines and standards be continued.

the training of health care professionals in all aspects of palliative care be increased.

there be an integrated approach to palliative care.  The delivery of care, whether in the home, in hospices or in institutions, with the support of volunteers, must be coordinated to maximize effectiveness.  The provision of respite services is an essential component.

research into palliative care, especially pain control and symptom relief, be expanded and improved.



Pain Control and Sedation PracticesThe Committee recommends:


the Criminal Code be amended to clarify the practice of providing treatment for the purpose of alleviating suffering that may shorten life.

the division of Health Canada responsible for health protection and promotion, in cooperation with the provinces, territories and the national associations of health care professionals, develop guidelines and standards for the provision of treatment for the purpose of alleviating suffering where that may shorten life.

education and training with respect to pain control be expanded and improved for all health care professionals.

the division of Health Canada responsible for health protection and promotion, in cooperation with the provinces, territories and national associations of health care professionals, develop guidelines and standards for the practice of the total sedation of patients.

the federal government, in cooperation with the provinces and territories, undertake a study in order to determine the frequency and conditions under which total sedation is practised.


Withholding and Withdrawal of Life-sustaining Treatment    The Committee recommends:


the Criminal Code be amended and necessary legislation be enacted in order to explicitly recognize and to clarify the circumstances in which the withholding and withdrawal of life-sustaining treatment is legally acceptable.  The criteria enunciated in this chapter under "Committee Deliberations" (endnote 1) should be considered.

the division of Health Canada responsible for health protection and promotion, in consultation with the provinces and territories and the relevant professional associations, establish guidelines to govern the withholding and withdrawal of life-sustaining treatment.

professional guidelines be amended so that they are consistent with these recommendations, the amended Criminal Code, and the national guidelines.

the Federal Ministry of Health, in cooperation with the provinces and territories, sponsor a national campaign designed to inform the public as to their rights with respect to the refusal of life-sustaining treatment.

research be conducted in order to determine the frequency with which and conditions under which life-sustaining treatment is withheld or withdrawn under the recommended legislation and guidelines.


Advance DirectivesThe Committee recommends:

those provinces and territories that do not have advance directive legislation adopt such legislation.

the provinces and territories establish a protocol to recognize advance directives executed in other provinces and territories.



Assisted Suicide                        


The committee recommends no amendments be made to the offence of counselling suicide under subsection 241 (a) of the Criminal Code.

The majority recommends subsection 241 (b) of the Code also remain intact [i.e. remain illegal to aid or abet a person to commit suicide].

The majority recommends research be undertaken into how many are requesting assisted suicide, why it is being requested, and whether there are any alternatives that might be acceptable to those who are making the requests.

A minority recommends an exemption to subsection 241 (b) of the Criminal Code be added, under clearly defined safeguards, to protect individuals who assist in another person's suicide.  These safeguards should include, at a minimum, the elements listed in this chapter under "Committee Deliberations" (endnote 2).  They further recommend, that in order to avoid abuse, procedural safeguards must provide for review both prior to and after the act of assisted suicide.



Nonvoluntary Euthanasia (Done without the knowledge of the wishes of a competent individual or of an incompetent individual)

The Committee recommends:


nonvoluntary euthanasia remain a criminal offence.

the Criminal Code be amended to provide for a less severe penalty in cases where there is the essential element of compassion or mercy.  Parliament should consider the following options:

- A third category of murder could be created that would not carry a mandatory life sentence but rather would carry a less severe penalty; or


- A separate offence of compassionate homicide could be established that would carry a less severe penalty.

The essential elements of compassion and mercy must be clearly and narrowly defined in order to limit the cases in which a less stringent sentence would be available.


Parliament should determine the appropriate penalty.


Voluntary Euthanasia


The majority recommends voluntary euthanasia remain a criminal offence.  The Criminal Code, however, should be amended to allow for a less severe penalty similar to that provided for nonvoluntary euthanasia in cases where there is the essential element of compassion or murder.

A minority recommends the Criminal Code be amended to permit voluntary euthanasia for competent individuals who are physically incapable of committing assisted suicide. This amendment would be subject to the same or similar minimal safeguards as outlined in the [recommendations] on assisted suicide.

A minority further recommends, that if voluntary euthanasia remains a criminal offence, the Criminal Code be amended to provide for a less severe penalty similar to the penalty for nonvoluntary euthanasia.

The committee recommends research be undertaken into how may are requesting euthanasia, why it is being requested, and whether there are any alternatives that might be acceptable to those who are making the requests.


Involuntary Euthanasia (done against the wishes of a competent individual or a valid advance directive)



The Committee recommends the prohibition against involuntary euthanasia continue under the present murder provisions in the Criminal Code.]


Endnote of Senate Committee Report


1 When a patient refuses life-sustaining treatment, the health care team should assess the patient's competence.  If the patient is incompetent, the health care team should ensure that the patient is making a free and informed choice, in which case the patient's refusal should be respected.  When the patient is incompetent but has completed a valid advance directive while competent, the wishes expressed therein should be respected.  In the absence of a valid advance directive, the health care team should turn to the surrogate decision-maker.  That person should make a substituted judgment if he or she knows what the patient would have decided were he or she competent.  A best interests judgment should be respected where his or her wishes are not know.  Life-sustaining treatment should not be withheld or withdrawn against the wishes of a competent individual or his or her surrogate unless the treatment is 'futile', as defined by the Committee.  Futility must be understood very narrowly as treatment that will, in the opinion of the health care team, be completely ineffective.  The Committee considers artificial hydration and nutrition as treatment; thus, the withholding and withdrawal of it is as acceptable in some circumstances as is the withholding and withdrawal of artificial respiration, blood transfusions and CPR.


2 The individual must be competent and must be suffering from an irreversible illness that has reached an intolerable stage, as certified by a medical practitioner. The individual must make a free and informed request for assistance, without coercive pressures. The individual must be informed of and fully understand his or her condition, prognosis and the alternative comfort care arrangements, such as palliative care, which are available. The individual must have been informed of and must fully understand that he or she has a continuing right to change his or her mind about committing assisted suicide. A health care professional must assess and certify that all of the above conditions have been met. No person should be obligated to provide assistance with suicide. These [Committee] members believe that regulations must be established in order to deal with the monitoring and enforcement of the safeguards by the appropriate level of government and that records must be maintained of all applications for and instances of assisted suicide.]



Conclusion


Euthanasia can never receive unanimous support. At present, people who wish to legalize euthanasia are, on the whole, as respectful of life as those who oppose it. The philosophies on both sides of the debate are very different but there is a common ground; most people involved in this debate want to improve the lives of people who have a terminal illness. The debate is helping us to examine our own beliefs but may be taking away valuable resources and time from expanding present services to people who have a terminal illness.


Chapter 9  Euthanasia: Voices from the Front Line


The issue of euthanasia brings out strong emotions and value judgements. There are firmly held beliefs and opinions by people in favour of euthanasia and by those who oppose it.


The palliative care experts who have been willing to share their thoughts and beliefs about euthanasia provide us with information that is rarely available to the general public. Their passion and their compassion are real. Please read their basically unedited views in the spirit of learning and sharing of opinions. There is a necessary and healthy struggle within the palliative care movement about the issue of euthanasia. Some of the people within the movement have strong feelings for and against. Others have doubts. Some of the authors' comments below will have significant impact on that debate. I am grateful for their help in educating all of us. Their opinions are their own and do not necessarily represent the views of the organizations they work for.


The Existence of Euthanasia Now


When you speak to some medical professionals, off the record, they will tell you that euthanasia already exists. Well-meaning doctors and nurses have given extra medication to patients in the last hours of their lives to end their perceived suffering. They have done this, often after the family has talked about their wish that the suffering end. The doctors or nurses gave the lethal medication without recording their actions or discussing it with other caregivers. The fear of criminal prosecution is real and therefore the practice is done quietly and secretly.


A different modern dilemma is described by a caregiver in a critical care area, who wishes to remain anonymous. Some would not call what this person describes as euthanasia, but it needs discussion not only because it points up differences of definition but also because it is a frequent occurrence in our health care institutions.


"We do it (euthanasia) already in our critical care units -- it's certainly not a natural death!


"The scene is this: Someone suffers cardiac or respiratory arrest, is resuscitated and brought to a critical care area. Or the person may simply have had enough medical problems that technology is needed to sustain life. In both cases no one has addressed with the patient or family the question: `Do you want to be revived if your heart or breathing stop, or if you deteriorate past point X?' Make no mistake. Terminal cancer patients as well as 80-year-olds with heart failure, are resuscitated when the answer to this question is not recorded on their chart and signed by a doctor.


"Ventilated, with tubes, lines, IVs [intravenous] inserted -- to keep their blood pressure up, infections down, breathing happening and their bodily chemistry balanced, the medical team tries to reverse whatever has caused the arrest or poor condition. Often two or three body systems are in difficulty.


"The hope in this scenario, often accomplished it is true, is to return the person to previous quality of life. BUT too often, the patient continues to fail and previous quality of life is not retrievable. Eventually a point comes when doctors speak to the family `We're sorry, there's nothing more we can do. We'll have to let him/her go.'


"Now, if the ventilator is simply turned off, the person will gasp and suffocate their way to death -- truly inhumane and untenable for any caregiver. So the ventilator is slowed, and sedatives and morphine are given to keep them comfortable and free of pain. It is recorded on the patient chart.


"Slowing ventilators and administering narcotics hastens the death process. Is this euthanasia, active or passive? Is it negotiated death? In such a situation the freedom from physical distress is good palliative care. But can death be called comfortable when the patient is prevented and has been for some time, from speaking because of tubes? To say that palliative care is not needed in our critical care areas is nonsense. The stress on staff and families is horrendous.


"Such termination of treatment and life is assisted euthanasia and in such circumstances, a humane death cannot be accomplished in any other way. It is certainly ethical. Is it legal? Doctors and nurses have responded with a firm `yes' and `no' to this question.


"The fact remains that technological interventions that prolong death instead of supporting life are easy today. They are too often used in place of the difficult conversations around patients' wishes as they approach the end of life. And in a society that is stressed for every health care dollar, a society where homelessness increases in our cities, they are expensive. A bed alone in a critical care area is upwards of $2,000 per day.


"It is time for open discussion about what can occur and for public education about the issues of not only palliative care as opposed to euthanasia, but also natural versus contrived death. Difficult conversations need to be had with family members, family physicians and the doctors who admit us to our hospitals.


"And let us acknowledge that we do euthanasia, or something very close to it. Let us make sure that good palliative care and comfort management are available to all (even in critical care units). Then let us see if nurse and physician-assisted euthanasia still needs to be discussed."


Palliative Care Experts in Favour of Limited Euthanasia


There are many people in Canada who believe in euthanasia. In a 1991 Gallup Canada (reported in Toronto Star, November 7, 1991) poll 75% of people of the 1,022 interviewed favoured euthanasia. The question asked them was "When a person has an incurable disease that causes great suffering, do you think that competent doctors should be allowed by law to end the patient's life through mercy killing, if the patient has made a formal request in writing?" Some people would argue that the question is misleading because good palliative care would mean that the vast majority of people will not have "great suffering." The fact remains, however, that in 1968 only 45% of Canadians favoured euthanasia under these conditions and now it is 75%.


Most of the experts quoted below who believe in euthanasia are clear that their support is only for the very few who might request it. Their daily work with patients and families in hospice care speaks to their commitment to helping people live a full life until death. Their support for euthanasia presumes that the person first received the physical, emotional, spiritual and informational supports they needed before making a request for euthanasia.


Cheryl Chapman, a Community Outreach Coordinator summarized her beliefs as follows. "I shudder to think individuals made a decision for euthanasia without considering good palliative care as a viable alternative. I have witnessed years of special moments, sharing, family closeness, life learning, and many other positive outcomes of such a sad time as death of a loved one -- euthanasia obliterates such opportunities. On the other hand, for those individuals who truly want to end life -- and turn away from the option -- then I support euthanasia in such cases. (In my years of experience I have only wished euthanasia was legal for two cases)."


Shirley Cooper, a Bereavement Coordinator believes there must be palliative care involvement before a decision for euthanasia is made. "I believe physician-assisted euthanasia should be legalized, BUT WITH STRICT GUIDELINES, e.g. patient should have been associated with approved palliative care service for `x' number of days before an application can be made for euthanasia."


Gertrude Paul, Palliative Care Consult Nurse, agrees with Cooper. "I feel euthanasia should be legalized. However, these terminally-ill patients should be enroled in a palliative care program, and made aware of the options available to them, so that they may die with dignity. An individual with a terminal illness should have the right to choose when their life will end without life-supporting measures if he/she chooses."


Larry Grossman, a Physician Manager of a Palliative Care Unit wrote that he was "strongly in favour [of euthanasia], with appropriate controls. Euthanasia should be an option available to patients as part of their continuum of care. Would need mechanisms in place to ensure freedom of choice, FULL disclosure of health care information (e.g. prognosis, treatment options), time to reconsider, second opinions regarding outcomes of primary diagnosis, etc."



The British Columbia Royal Commission on Health Care and Costs took a strong view on the euthanasia issue and recommended the following:


"Request that the Criminal Code be: amended so that a competent adult patient, or the duly appointed proxy of a patient who is not competent has the absolute right to refuse medical treatment or demand it cease; amended so that if a terminally ill patient's suffering cannot be otherwise relieved, a physician may prescribe, and a health care worker may administer, any therapeutically necessary pain relief medication to that patient in a dose which may be fatal; amended so that section 241(b) does not apply where the person who commits or attempts to commit suicide is terminally ill, and the health care worker who helps that person commit or attempt to commit suicide does so in accordance with the ethical standards of his or her profession; amended so that physicians may withdraw or withhold treatment if: a patient is terminally ill or exists in a persistent vegetative state, no longer able to enjoy any quality of life and cannot give or withhold consent; and the physician is of the opinion that the treatment is therapeutically useless."


Steven Waring, a hospice care volunteer, believes that "Euthanasia should be available for those who choose to end their life in a distressing terminal situation." He suggests an alternative for patients which is the voluntary withdrawal from feeding in the end stages of illness which "needs no medical assistance" and leads to death.


Evelyn MacKay, a former nurse and now a therapeutic touch practitioner and a palliative care volunteer and teacher, examines a patient's rights to make decisions and why they would make those decisions. Not necessarily in favour of euthanasia but in favour of patient choice she writes "I guess if you cannot trust society to care for you well, you'll pay someone to extend trust to you. I consider that to be the basis for any thoughts toward physician-assisted euthanasia. The question of euthanasia is so threatening, we must each of us deal with it however we can. Who has the skill to deal with it perfectly?


"Dr. Bernard Lown of the International Physicians for the Prevention of Nuclear War [he was co-chair when it received 1985 Nobel Peace Prize] was asked how he had been able to work so closely with the Soviets [the other co-chair] when their ideology was so different from his. He replied, `I decided I could be self-righteous or effective'. I keep this in mind with each dying person I attend. It is important to set aside my own beliefs to honour theirs. After all, their life is at risk, not mine. Their beliefs will sustain them, not mine. What else will serve them as they lose physical control? What else, through fear and pain and extremity, can comfort? Only their beliefs. And who else speaks to them of acceptance at that moment except the one who is physically at the bedside. If it is me, I don't need to approve. I MUST try to accept. Maybe the issue of euthanasia will be no different. Maybe this tool of Dr. Lown can allow both the client and me some degree of comfort. I would not think of dictating other aspects of a client's life. I cannot dictate his ending of it. The choice must be his. The acceptance of his choice must be mine.


"I don't know what the answer SHOULD be -- I am not so good at `shoulds'. The person who decides after careful consideration, to end their life likely has more courage than most of us. Given the choice, most of us would muddle through and whine a lot! I guess if Creation gave us a mind, or lent us one, we must be able to think or feel our way through this. But the deliberate act -- not the sudden selfishness of a thoughtless suicide -- deserves some consideration. To throw oneself so dramatically into the unknown and trust the arms of the COSMOS for support! -- what a trust!"


Marilynne Seguin, a former nurse and now Executive Director of Dying With Dignity wrote that there will always be people who will choose to end their life by euthanasia. "Experience emphasizes the fact that while many people wish to explore this option, few find it necessary to exercise it. The truly critical element is that every person has a right and must be fully informed of all aspects of their health condition including a full disclosure of a realistic prognosis, so that they may make a decision in a calm reasoned way. Prolonging death is not the decision that needs to be made, but rather living with some sense of enjoyment, integrity and control. `Life at all costs' is not the choice of many persons, but life yes, as long as there is a reasonable expectation of enjoyable participation in that life. When this option becomes unrealistic or irrational in the mind of the sufferer, there must be an openness on the part of caregivers to discuss euthanasia -- a good death....For the ultimate decision to live or to die is the prerogative of each patient/person. Once this decision is made it is the obligation of the health care worker to support and assist expeditiously and gracefully to the maximum their conscience and society allow.


"Voluntary euthanasia is a debate still in its infancy in Canada but it is a debate that will not be stopped -- nor should it. There cannot be a sense of security and trust between health care practitioners and the patient/consumer unless the latter believes and knows his or her own wishes, values and beliefs are the driving force determining the limits of medical treatment. Dr. Pieter Admiraal of The Netherlands says, `Never euthanasia because of pain, but voluntary euthanasia must be an option if pain cannot be controlled'."



Some Palliative Care Experts Believe Effective Palliative Care Means People Will Not Ask for Euthanasia


Anne Bell, Executive Director of a provincial hospice association, wrote "I think that physicians, the Canadian Cancer Society, palliative care support groups and the media have a moral obligation to inform the public about the resources available so that when an individual is confronting a terminal illness, that person will not experience the hopelessness and fear that leads to a request for euthanasia."


Wilma O'Connell, a Palliative Care Program Director, believes that "if every available resource were utilized to provide quality of life and a pain free state, I do not feel many, if any, terminally ill patients would opt for euthanasia. We need to look at the `Total Pain' of our patients."


Carol Derbyshire, Executive Director of a community hospice, agrees. "I am not an advocate of euthanasia. I feel hospice care came about as an alternative to euthanasia. I would rather work harder at creating new ways of helping patients to address their total pain than to encourage legalizing euthanasia."



Dr. Elizabeth Latimer, Director of a regional palliative care program, asks us to look at who really wants euthanasia. In her article "Euthanasia: A Physician's Reflections" she writes: "It seems that the greatest lobby for euthanasia comes from a group that can best be termed `the worried well'. Sick and dying people rarely request euthanasia, as the experience of those caring for the dying in palliative care or hospice will confirm. This is particularly true when they and their families receive intensive support of a physical, psychological, and spiritual nature.... [A patient's sense of] desirability of an earlier death usually arises out of a need for release from a state of isolation, desperation, and suffering that seems without end. That patients within a caring community of support rarely ask to die earlier should illuminate what is required to help dying people.


"Criteria like intractable suffering, repeated voluntary request, and sustained desire to die are sufficiently general to be totally unsafe in some physicians' hands. Many clinicians do not listen with sufficient care to patients, particularly dying ones, to understand the nuances of what they may say about wishing for death. Indeed, their very cry for death may be the contrary -- a cry for validation that continued life still has value."


Dr. Dorothy Ley, Founder and Past President of the Palliative Care Foundation, believes that society wants instant answers to complex questions like euthanasia. The popularity of Final Exit is one indication of this need for immediate answers. She believes that the general public does not have the knowledge to evaluate what medicine can, or cannot, do for them. Health care professionals have created an impression of invincibility and the public now expects and demands cures for all diseases. When a cure is not possible, many people end up distrusting the medical profession and health care system and want to take back control over their lives, and their deaths.


Dr. Ley believes that the "litmus test of palliative care is love and it doesn't matter where love comes from. Whether it comes from marriage and relationships, good friends, or from one's faith (religious or not). As long as someone feels they are loved and as long as hospice gives that love (even as a surrogate family if necessary) then the requests for euthanasia will decrease even further. It is dangerous to legalize killing people and that is what you would be doing. Negotiating a death with patients and loved ones gives doctors sufficient support to make sure that a patient is comfortable until their death even if that comfort comes from medications that may shorten life."


Palliative Care Experts Opposed to Euthanasia


Dr. Louis Dionne, Director General of a free-standing hospice, states his views concisely. "I am against legalization." Dr. Balfour Mount, a professor of palliative medicine, is equally concise. "[Euthanasia] should NEVER be legalized." Dr. Margaret Scott, also a professor of medicine and a provincial consultant on palliative care, summarized her view with "I am fully against this."


Joan Henderson, President of a community hospice, says "Personally, I am strongly opposed. To me the greatest gift one can give someone who is dying is a journey full of love, care, comfort, hopefully laughter, reminiscences, control, empathy and hopefully free of pain."


Tom Malcomson, a professor at a community college who teaches in the field of dying and death wrote: "I am against euthanasia, assisted or not. Legalization creates a system with rules, regulations and criteria for acceptance of being available for `service'. They ultimately become overloaded and breakdown. The person they were created to serve is lost, with the system itself becoming the foremost important objective to keep alive. To fuel it, people need to die. Doctors and family members and patients themselves will fall prey to the evil of systems where individuals lose out and the social/system order prevail.


"The idea of termination of life becoming a `medicalized treatment' places in the lap of doctor and hospital/institution the power to end life/kill in the name of humane treatment choice. Choice is used to indicate free will, yet I am hesitant to believe that free choice is involved in the decision for most people. We live in a society that demands freedom from pain (emotional and physical), burdens, problems and illness. Yet dying involves, naturally, all these things (as does many forms of chronic illness/problems of living [some would say life involves these naturally]). There is very little tolerance of any delay, or delaying element, in our lives. We want everything yesterday and don't appreciate waiting. Slow people (in movement, thought and response), people who will require repetitive responses (verbal and physical), people who are not clear in their thinking, people in pain are not tolerated and are most often seen as a burden to deal with. (Providing support to others requires us to give of ourselves at some cost; emotional and physical.) Our society clearly tells people we do not want burdens. [Note: a current insurance television commercial has an elderly person saying they got the insurance because they do not want to burden their relatives with the cost of a funeral.] If someone views their dying/illness as being a burden to others they may feel the only option is immediate death, rather than working through the issues and struggles that come with living while dying. Therefore their choice is a false one, the social pressure for them to remove themselves from life is overwhelming.


"The issue of assisted euthanasia will ultimately lead to the quantifying of the value of human life, which is inherently of value. This will happen because doctors will need rules to allow them to decide when someone's request is valid and when it might indicate another issue, i.e. mental disturbance, in which case the assistance will not be given and, indeed, heroic efforts to save the person might be made. Once rules are laid down the possibility of taking them and applying them to groups who may meet them, but are not `dying' is simply to tempting. History shows the slippery slope here to be reality and that is simply unacceptable.

"The problem is that we can not come up with an answer because once we do it tends to become institutionalized and the person is once again sacrificed to the system. Perhaps we should then continue forever the struggle of this issue and fail to arrive at a systematic end point, in order to care, filled with hope, for the person we love while they are dying."


David J. Roy, Director of the Center for Bioethics at the Clinical Research Institute of Montreal has written some of the most convincing and extensive arguments on the subject of euthanasia. I am quoting from two of his articles (See References) which give us some of the history around this debate and some consideration that are not as often talked about in the debate for or against euthanasia. Portions of the articles have been deleted or shortened but the quotes are directly from the articles.


"Those who plead for a legalization or decriminalization of euthanasia would justify a doctor's deliberate termination of a suffering dying person's life by appeal to the [ethical] principle of autonomy. That principle means that a patient's informed, stable, and clearly expressed will should be respected.


"The Law Reform Commission of Canada honours that principle when it recommends that the Criminal Code of Canada be amended to prohibit any relevant paragraph of the code from being interpreted as requiring a physician to continue to administer or to undertake medical treatment against the expressed wishes of the person for whom such treatment is intended. Those who favour legalization of voluntary euthanasia emphasize that doctors are not assuming the authority to terminate a patient's life. That authority is rather bestowed upon a doctor by a patient seeking release from intolerable suffering.


"However the principle of autonomy is not absolute. The right to command respect for, and compliance with, one's will ends where community peril begins. And the legalization of physician-administered euthanasia would open the door to peril. If euthanasia were legally and socially acceptable, subtle or not so subtle pressure on people to choose this option would hardly be reprehensible. Some would then be persuaded to die before their time and before they are ready. If voluntary euthanasia were to be legalized, could we really expect that the prohibition of involuntary euthanasia would be maintained? If some harbour that expectation, then we must ask, on the basis of what arguments or reasons that would not in time, mostly likely in all too short a time, come to appear utterly arbitrary and unpersuasive? At a time when universal health insurance is straining everyone's pockets and budgets, would not legally and societally acceptable euthanasia be altogether too convenient?


"...the civilized solution rests with a rapid implementation of programs of palliative medicine and palliative care, not with resignation to pressures for euthanasia....Patients have a right to demand release from pain; and physicians have a responsibility to master the methods of pain control and to administer the analgesic dosages necessary to control pain. There are recent reports that patients still do die in agony. These are the events of suffering that fan the flames of pleas for euthanasia and for help in committing suicide.

"The challenge of civilization to our societies at the end of this decade is to transform our care of the suffering and the dying. The challenge is not to legalize an act that would all too easily substitute for the palliative competence, compassion and community that human beings need during the most difficult moments of their lives.


"Some have proposed that only voluntary euthanasia should be legalized or decriminalized. This position sounds good and reasonable....I believe this position rests on naive and illusory assumptions. It is highly questionable that we would be able to uphold the voluntary character of euthanasia were it to become a legally and socially acceptable option. Voluntary means freedom from coercion, pressure, undue inducement, and psychological and emotional manipulation. There is no law permitting voluntary euthanasia that could, even if implemented via complex procedures, protect vulnerable people against subtle manipulation to request socially acceptable administered death when they would rather live and be cherished. The position in favour of legalizing voluntary euthanasia begs for a world of ideal hospitals, doctors, nurses, and families. But we do not live in an ideal world.


"There are many persons in our hospitals, chronic care wards, and nursing homes across the land whose lives, by standards external to themselves and in the perception of others, are hardly worth living. All that many of these persons have left is the ability to sense and experience biological pain and comfort, gentleness of care, pleasing sound, human presence and warmth. Some cannot experience even that, but their relatively strong bodies cling to life. I foresee that the social barriers against involuntary euthanasia would crumble, maybe rapidly, maybe slowly, but they would crumble. There would then be little to stand in the way of changing the law, already changed to permit voluntary euthanasia, to now permit administration of death to those who no longer have a will of their own in the matter.


"Some want some sort of legislation passed that would protect well-meaning doctors against prosecution when they administer euthanasia to suffering persons who truly request this on their own initiative....It is utterly naive to imagine that a law permitting voluntary euthanasia would reduce the likelihood or frequency of doctors appearing before the courts to defend their administrations of euthanasia. The more frequent these acts of euthanasia would become -- and frequent they would become with such a law -- the more likely it is that this law would be used as a legal arena for the pursuit of doctors by those who do nor morally accept the law; or by those who doubt the law was properly applied in a particular case; or by some grieving family members who believe other family members were all too eager in supporting a loved one's request for release from suffering.


"There is a last illusion I would expose and it is the most dangerous of all. It docks in the bay of well-meaning simplicity, the simplicity that imagines we would remain the caring society we think ourselves to be after we would accept and implement a law permitting voluntary and involuntary euthanasia. The simplicity consists in the narrow focus on the particular situation in which one person, here a physician authorized by a law supporting voluntary euthanasia, wants to do good for another person, a patient requesting release from unbearable suffering. That narrow focus ignores or simply does not see what Loren Graham, in the context of his discussion of eugenics and genetics in Russia and Germany during the 1920s, has called the `second-order' links between science and values. Second-order links are difficult to see. They depend upon existing -- and changing -- political and social situations, and upon the persuasiveness of current -- and emerging -- philosophies and ideologies, however flawed these may be. The uses to which genetics may be harnessed, or the programs which a law permitting euthanasia could come to serve, depend upon these second-order links over which we rarely have comprehensive control when we develop a science or change a law.


"In 1920, Karl Binding, a doctor of jurisprudence and philosophy, and Alfred Hoche, a doctor of medicine, published a book in Germany on euthanasia. They did not intend the Nazi euthanasia programs that were a central focus at the Nuremberg trials. Nor, perhaps, could these two eminent men have foreseen the `second-order' links between their `benevolent' ideas on euthanasia and an emerging Nazi ideology. But those links were eventually forged, and evidence at the Nuremberg trials established the influence this book exerted on those who designed and implemented the Nazi programs.


"The signs in our society of overt discrimination, of latent racism, and of utilitarian insensitivity to the vulnerable are too prominent for me to be insouciant [carefree] about proposals to decriminalize euthanasia. I shall persist in my uncompromising stand against a law that would permit the administration of death. Yet there is no law, not even the law interdicting euthanasia, that can match the infinite variety of human situations. That is, in part, the reason for the difference between statutory law and jurisprudence, between law and ethics.


"What should one do when a husband and adult sons ask, in front of their mother dying from throat cancer, and with her nodding agreement that the doctor put her `to sleep' Saturday or Sunday, the days when everyone expected her to die. Her pain was bearable, but the periodic choking episodes were terrifying to this woman. She wanted to die in peace and tranquillity. She did not want her last moments of consciousness to be the consciousness of panic and terror. The doctor believed that euthanasia was the only route open to him to give this woman and her family what they so deeply and reasonably desired. But the doctor could not walk that route. The woman did die on the Sunday and in a choking episode.


"After the funeral, the husband and sons were crushed with guilt, and so were the staff who had cared for this woman. `What would you have done?' I was asked. I responded that I thought everything necessary should have been done to assure that this woman died, not in choking pain, but in tranquillity. It was wrong to let her die in terror.


"This woman was dying. Her death was inevitable and imminent. Her life was already out of the doctor's hands, and anyone else's hands for that matter. Only the timing of her death was still in the doctor's control and he, upon the woman's silent request and upon the explicit request of her family, would have been utterly justified ethically in timing that death for a moment of tranquillity.

"This is only one story illustrating an ethically justifiable advancing of a death that is both inevitable and imminent. We need not change our laws to guarantee doctors immunity from prosecution in such circumstances. We need rather to perfect communication between patients, families, doctors and clinical staff so that, when such circumstances arise, all together will know and come to agree on the right thing to do. It is not inconsistent to judge certain acts of hastening death to be morally justifiable and yet simultaneously to hold that laws should not be modified to grant to doctors or anyone else legal authorization in advance to carry them out.


"Some will raise the objection: but doctors will be uncertain and concerned that someone could still accuse them of murder. They will then administer ethically justifiable euthanasia, if they do at all, only in fear and trembling of the possible legal consequences they may have to endure....We should all rally to protect those who, in rare circumstances, know how to exercise charismatic authority, the authority that consists in knowing what to do when all established ethical and legal rules fail to apply. We should not, however, give facile credence to those who would want to generalize that exercise of charismatic authority. It is sane, not inhumane, to surround those who would administer beneficent death with spotlights of vigilance. Fear and trembling in this matter is not a bad thing at all."


Where to Go From Here?


Dr. Elizabeth Latimer offers us some advice about where to go with this euthanasia debate. "Society should use the issue of euthanasia as the stimulus to define its true positive responsibilities to its dying members. Energies and resources should first be directed to doing more to help these people to live, rather than debating whether they should be killed.


"The euthanasia debate will not, and indeed should not, be easy....I find the moral `rightness or wrongness' of euthanasia itself unanswerable in the abstract. It does not reduce to a two-dimensional model, a `yes or no', a `black or white', or a `right or wrong'. Some patients are in compelling states. Their individual tragedy is profound. To make the situation even more complex, the most poignant of these may not be patients who are dying, but rather those who will live potentially full lifespans in circumstances that they cannot support. Some can speak for themselves; others cannot. What of them? Are they obliged to go on living? Our present obligation is, I believe, to make a more concerted effort to care for dying people well. Once this is done, and the true need for euthanasia is clearer, we must struggle to find a humane response."


Summary


This chapter is full of information. What is clear is that there is agreement on the need for sufficient palliative care to meet the needs of people who have a terminal or life-threatening illness. Even those experts who favour legalized euthanasia only do so if patients have received palliative care. Marilynne Seguin, Executive Director of Dying with Dignity, pointed out earlier that many people may be interested in euthanasia, but "few find it necessary to exercise it." People want a sense of control over their lives until they die and euthanasia gives people a sense of that control.


The debate on legalizing euthanasia rests on our need for instant answers to difficult questions. There will always be some people who will want to end their lives prematurely. The debate centres around whether or not people can ask for legal help in dying when they choose. This chapter may need to be read several times before any of us can understand the differing view points expressed here. It is worth the effort. These people are involved daily with people who are dying. We do not have enough ideas and thoughts from people who are dying but we do have a collection of palliative care providers who work every day with people who are dying. Their ideas must be understood and listened to before the public debate on euthanasia goes any further.


In brief those in favour of euthanasia believe:


  1. euthanasia is quietly and secretly practised today and must come out of the closet

  2. euthanasia is approved of by 75% of Canadians

  3. few people actually request euthanasia so there is little danger of abuse

  4. palliative care should be provided before assisted-euthanasia can be requested

  5. we must support people's choices even if we disagree with them


Those opposed to euthanasia believe:


  1. palliative care, effectively given, meets the needs of people who have a terminal or life-threatening illness

  2. euthanasia is often promoted by the "worried well" rather than people who are dying

  3. abuse of legalized euthanasia is inevitable.



Chapter 10  Hospice Care and Euthanasia: Personal Reflections


When I began this book I hoped I would have a clearer understanding of hospice care and the euthanasia debate. I am sure there must be immediate expansion and improvement of palliative care services in Canada. I believe that the euthanasia debate will take away time, energy and funds from improving palliative care unless we are careful. Studies have shown us that many people express interest in euthanasia but few actually ask for it near the end of their lives. I believe that a resolution to the euthanasia debate must begin with national agreement and actions that reflect how we value life, how we value self-determination and how we value those of us less likely to speak for themselves and therefore vulnerable to the inherent abuses any legalized system of euthanasia would evolve into.


I wrote a book called Choices for People Who Have a Terminal Illness, Their Family and Their Caregivers. I am often asked if I believe that people should have the choice of euthanasia or assisted suicide if they ask for it. If I believe in choices should I not also believe in people's free choice to end their lives when they choose?


I am strongly in favour of an individual's rights to make decisions as long as those decisions do not harm others. I am also strongly in favour of our country having a national consensus on how we value life before we begin deciding who we can help die or not. I am not convinced that we are ready for such a consensus.


Do I believe that we are ready, capable and sensitive enough to have a euthanasia law that protects the innocent while preventing serious abuse?  I do not think there is a legislated solution to this issue. There is already too much systemic discrimination and abuse within our present laws and I do not believe that legalized euthanasia could avoid these problems.


I believe that people must always have access to information about all choices available to them when they have a terminal or life-threatening illness. I believe that information about euthanasia must be available. I believe people who are dying must feel free to talk about their thoughts on euthanasia. I believe that we have not heard enough from those who are dying and their thoughts about euthanasia. Why do so few people in hospice programs ask for euthanasia? Why do so few people in Holland ask for euthanasia (1.8% of all deaths according to the study by van der Maas, van Delden, Pijnenborg and Looman) if it is not prosecuted there?


I believe in choices. I do not believe or trust in systems however. Until we have national agreement on the value of each of our lives, a consensus on how we learn to treat everyone fairly and justly, we cannot have a system that legalizes the killing of people, whether they ask for it or not. We can never be sure of the real reasons for their requests. We can never be sure we provided all the physical, emotional, spiritual and informational supports they needed.


We live in one of the best countries in the world. We have a health care system that needs changes but still provides basic health care to almost anyone living in Canada. We have a political democracy that is the envy of many other countries. We have a social service system that has helped millions of us since its development after World War II. We have an education system that has produced millions of educated children who are making a difference in the world socially, scientifically, religiously, economically and politically. We are fortunate to live where we live.


The same political, health care, education, justice and social services systems that have done so much for Canada, and for that matter, for the world have also done less admirable things.


Let me describe some of our systems. Our economic and social services systems do not meet the needs of over 3,000,000 in 1989 who were under the poverty line in Canada (Statistics Canada is used for all the following statistics.) The poverty line means any family who must spend more than 58.5% of their gross income on food, clothing and shelter. We have over 300 food banks in Canada because people cannot earn enough money to feed themselves or the one in seven children in Canada who live below the poverty line. Our social services have not been able to find reasonable shelter for the thousands of people who live on our streets or in sub-standard shelters and homes. We have over 800,000 people with some form of disability that significantly affects their daily living yet we still have to make sure they have an equal share of homes, jobs and participation in Canadian life.


We have a health care system that spends most of every person's total life-time health dollars in the last year of their life. We are still unable to let people die naturally without first trying many high-technology interventions to "save them." Death is still seen as a disease requiring treatment rather than the last phase of someone's life requiring care and support. We over prescribe medications, especially for women and older patients, and we over treat others.


Our justice system institutionalizes more people per capita than almost any other country in the world. Our national opinions on the value of life for some criminals changes from voting in favour of capital punishment to voting it illegal again. It has gone back and forth and may never be resolved. Our justice system has yet to remedy racism in its judicial decisions nor has it dealt with spousal abuse, violence against women, child abuse or elder abuse to a significant enough degree.


Our education system is trying many new approaches to reduce the high number of drop-out students in high schools. We have nearly 3,000,000 Canadians who cannot read at a basic level and most of these people were born here and brought up through our education system. We have nearly 2,400,000 Canadians who do not have basic arithmetic skills.


We have a political system that says changes to palliative care take time and we have limited resources to improve home care dramatically. Yet this same system can join 29 other countries within a matter of months and provide money, resources and people to fight World War III in the Persian Gulf. We talk about valuing life and yet we declare the loss of over 100,000 people in that war as just. Within the same year of that war we saw the end of the U.S.S.R. as we knew it. The complete dismantling of a totalitarian government without a major civil war was unbelievable only a few short months ago. The Berlin Wall is down, something we never thought we would see in our lifetimes. Yet we cannot improve the quality of how people live until they die in one of the richest countries in the world.


The emotional trauma of those who chose to live or to die is never discussed enough. Few people choose to die. If you think of all the difficulties faced by Canadians on a day-to-day basis -- for example, loss of jobs, deaths in the family, failed dreams, lack of faith, their own terminal or life-threatening illness -- it is remarkable how many people still choose to live. In 1989 99.9999% of all Canadians chose life over suicide. We tend to concentrate on the negative and miss the depth of commitment to life that most of us have. Concentrating on euthanasia will take away from the support needed by the other 99.9% of people who die each year.


This does not mean we should ignore real suffering. Anyone who has helped someone who is dying understands the real drama, and sometimes, trauma of these situations. Everyone I have met and discussed this issue with is sensitive, caring and sincere. All of them support life and those who approve of euthanasia do so only when all other options have been looked at.


It is not enough to say that we oppose euthanasia even though we sympathize with someone who is suffering physically, emotionally or spiritually. Should we not grant the last wish of the few hundred people per year who really suffer unbearable pain? We must recognize the depth of these peoples' beliefs, needs, and their fears. A high moral stance by individuals, health care institutions and professional associations is little comfort to people in need. There must be a solution acceptable to individuals and society as a whole.


In the past one solution has been what some called a "negotiated death." In this situation those who care most for someone who has unbearable suffering join in discussions with the doctors, nurses, perhaps a social worker or chaplain, to see what the best options are. Sometimes it has meant giving sufficient drugs to relieve suffering even if this meant shortening the person's life. Other times it has meant withdrawing life-support systems (e.g. respirators, artificial feedings). Other times it has meant not resuscitating someone who has a heart attack or respiratory failure. This was never considered euthanasia until the debate heated up. This was considered good medical care with the support of patients' making decisions where possible, or with the support of family members and decisions recorded in the person's medical chart.


A negotiated death, however, does not resolve the issue of those who want to die before their illness causes what they think is unbearable suffering. A negotiated death does not cover situations of chronic illness or when people fear loosing their minds (e.g. in Alzheimer's Disease). What to do in these situations?


The struggle within me between an individual's right to choose and my fear of serious abuses within our already flawed health care and social services systems prevents me from believing that we can legislate compassionate euthanasia. Even if we trusted the professionals and volunteers in palliative care who have struggled with this issue for much of their lives to provide compassionate euthanasia in the 1990s, I would not trust second and third generation caregivers who have been brought up within a system that allows, or even encourages, euthanasia.


When I first began studying euthanasia in the mid-1980s I read the arguments against it based on the abuses of euthanasia in Nazi Germany. I was angry that anyone could believe that we in Canada could abuse voluntary euthanasia in the same ways that happened in war-time Germany. I have since learned that the euthanasia debate in Germany began in the 1920s and 30s by medical and scientific people to improve the natural order of human development and to minimize human suffering.


On January 29, 1992 the CBC program "Fifth Estate" presented films recently found in East German archives. These films in documentary and drama formats were designed to help the general public and health care providers feel comfortable with the thought of euthanasia. The films presented people with physical and mental disabilities, others with mental illness, and those with chronic illness (e.g. multiple sclerosis). The following are some quotes from these films.


About people with physical and mental disabilities: "Every reasonable person would prefer death to such an existence." About people with chronic illness or mental illness: "These people should have deliverance through death." Their lives were considered and labelled "life unworthy of life." "An existence without life." As one scripted observer said "I'd rather be dead then have to live here."


How often have we walked into a chronic care hospital or nursing home and thought similar thoughts about some of the people we saw? How often have we seen someone with a disability and thought, "I couldn't live like that." As Dr. Elizabeth Latimer asked us, "Who is proposing legalized euthanasia?" Are they what she called the "worried well" who believe that in similar circumstances to someone they see they would choose to be dead? How many people who have a life-threatening or terminal illness really do ask to die versus the number of "worried well" who advocate legalizing euthanasia?


One film compared the natural selection of stronger animals over weaker ones to the natural selection that humans should do to strengthen the human race. Lives that were considered unproductive or meaningless would be delivered from the condition to strengthen the majority of the population. In fact animal mothers often destroyed weak babies to preserve the family so why shouldn't humans? At present, Canadian scientists and medical people are examining the ethics of genetic counselling and testing to prevent the births of "imperfect" babies. In Germany between 1933-1939 350,000 people had mandatory sterilization to prevent spread of disability. Since that time Canada has also had large scale sterilization of people with mental disabilities because it was "for their own good."


We no longer have a consensus on the value of life. Life in the Judeo-Christian history was sacred. Medical technologies, such as life-support systems, transplants, and genetic counselling have blurred our sense of when life begins and ends and what value life really has. In this century alone we have killed 65 million people in two world wars (almost three times the Canadian population). About 55,000 Americans died in ten years of unwarranted fighting in Vietnam. Less known is that 43,000 Americans died in only three-days of war at the Battle of Gettysburg (that equalled one out of every four soldiers fighting there) -- American against American. In 1990 there were over 70,000 therapeutic abortions in Canada. People protest this horrendous number of deaths but do not personally, or societally, provide alternatives to the women having abortions. Most women do not treat a decision to abort a baby lightly. It is a struggle between their moral upbringing and societal trends. When choices are not provided these women face a major moral dilemma with little more than rhetoric from some pro-choice and pro-life groups as comfort. We have taken tens of thousands of people from their homes and housed them in health care institutions in Canada, many without family and friends visiting regularly. We prolong the lives of people with high-cost, high-technology interventions with a resultant increase of Canadians (75% according to Gallup) who believe in some form of legalized euthanasia to help people who do want to die.


We must listen more to people who are dying. Do they believe in euthanasia when they have sufficient physical, emotional and spiritual support? We must listen to the people who provide palliative care formally and informally. Do they believe in euthanasia as a part of the continuum of care, and why/why not? We must listen to the people who study higher moral thought because they are our historical memories of what we as a group of people once thought. The concept of personal rights versus personal duties is only one or two generations old. Before that we had traditional customs that over centuries became our morals and laws. We must not lose that history of higher moral thought to modern demand for instant answers and self-centred approach to living. We must not repeat the mistakes of past societies that devalued life to the point of mass murders.


People will continue to resort to suicide when they want to die and when they are able. Some people will find the help of a family member, friend or physician who will help them with an assisted suicide. That happens today and it will continue tomorrow. The fear of legal prosecution forces people, both those requesting help and those who may provide help, to examine their consciences. If they truly believe they are morally correct in their actions they will proceed regardless of the law, taking every precaution to ensure secrecy. These are unsatisfactory answers to legalizing euthanasia but the consequences of legalized euthanasia are too frightening to risk the inherent abuses of any legislated solution.


I have been with people who have begged to die. No other situation can come close in degrees of stress and trauma to those situations. In the few times it has happened to me I know now that palliative care would have satisfied the people who asked me to help them die (I did not know about palliative care at the time).


What would I do in a situation where someone has received all the physical, emotional, and spiritual supports she or he needs and still asks for my help? First of all, palliative care does not exist in Canada for everyone and, therefore, these supports must be available to everyone before we design legal solutions to a social problem. Assuming that an individual person has received effective palliative care support and still asks for my help, what would I do?


The moral answer is to say that I would stand by them, support their decision as best I can, continue to provide loving care to the best of my ability, reinforce for them my hope that they will stay alive because I will miss them when they are gone, and I would refuse to help them actually end their life. The more selfish answer might be that I would help them to end their perceived suffering (and some of my own) with the knowledge and skills I have acquired and never tell anyone of my actions. Which would I do? I don't know. As David Roy wrote "Fear and trembling in this matter is not a bad thing at all." I would be afraid of my actions. I would be afraid of the reasons why the person made the request. Do they want to die because they do not want to wait for death to come to them? Or do they want to die because our society has so little compassion and patience for people who are ill, old or dying. I would have to trust that the two of us would do what we truly thought was best always keeping in mind that any action to end life would be illegal and therefore force us to treat any action we take with the greatest caution, compassion, and clarity of purpose as possible.


I understand our need to spend time deciding what we would do under the extreme situation of someone asking our help to kill them. I have spent many hours in the past 12 years since my mother died trying to answer that question. Before that time, life and death questions were intellectual debates at school. Helping her to live at home without palliative care supports made these issues all too real. Researching and writing this book has helped me get closer to an answer and I hope the struggle for the answer in your minds and hearts have been helped by this book as well.


When I was a political science and history student I thought I had a simple answer to every question. Not having an answer was worse than having an answer I did not like very much. Getting older, helping my parents and grandfather to live at home until they died and researching this book over the past decade has taught me the value of doubt. As Professor Wolf Wolfensberger wrote in one of his papers "Ubi dubium ibi libertas = doubt is freedom." My doubts about hospice care and euthanasia do not feel particularly freeing yet but the doubts do free me from having "to be right." They free me to continue to examine my own morals and how I apply those morals to my actions. My doubts free me to listen to people who disagree with me. My doubts free me to listen to a person who is dying and who asks me for information and help. My doubts force me to examine my fears about dying and sickness. My doubts encourage me to talk to other people about this issue in hopes that together we can struggle toward some answers.


The key, however, remains the desperate needs of people who have a terminal or life-threatening illness. They need the spirit and knowledge of palliative care through informal or formal programs. They need physical, emotional, spiritual and informational supports. Until all of us do something practically to meet these needs I believe it is hypocritical for us to spend our time in the intellectual exercise of a euthanasia debate. We must concentrate on the people who need our care and support. We must help people recognize their value to all of us. Everyone is valuable and everyone has something to contribute to the rest of us. Once that is done we might be able to have a consensus on the value of life and therefore a framework to discuss euthanasia. If we are not willing, personally, to provide the loving support of hospice care to people who are dying then we cannot delegate our human responsibility to these people with a euthanasia law that will allow others to kill them on our behalf.

Dying for Care: Hospice Care or Euthanasia


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Copyright © 1992, 1995 Harry van Bommel

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