Prolonged Dying

Dying has changed drastically over the last century. In 1900 the life expectancy in the U.S. was 47 years; by the mid 1990s it had risen to 77. Whereas, in earlier times, people typically died quickly from infectious disease or infections following injury, now most Americans are living long enough to develop degenerative diseases: heart disease, diabetes, stroke, cancer. Now, 70-80 percent of us will die of something we have for months or even years.

Four out of five Americans now die in an institution: hospital, nursing home, or other extended-care facility in which, typically, patients forfeit control over what to wear, when to eat, and when to take medicines, for example. Furthermore, they almost inevitably lose substantial privacy, intimate body parts are examined, highly personal facts are written down, and someone they have never seen before may occupy the next bed.

Finally, trust must be placed in strangers selected by the institution: care is given by professional experts who might well be, and who frequently are, substituted freely for one another to accommodate work schedules and institutional needs. All of these factors serve to isolate patients, rob them of their individuality, foster dependence, and diminish self-respect and self confidence, even when illness, medication, and surgery have not already had these effects.

In addition, the infrequency of home deaths has drawn a curtain of ignorance around dying, which make it easier to misunderstand and, up to the point of personal involvement, neglect the process.

Medical ability to maintain hopeless life has increased tremendously. Social critic Ivan Illich calls this "managed maintenance of life on high levels of sublethal illness" the "ultimate evil" of medical progress. We're still sorting out the individual, social, and medical consequences of the widespread shift from acute to chronic disease; from dying at home to dying in a hospital, from dying quickly to dying slowly. Illness-driven suicide and euthanasia are two of these consequences.

Five hundred nineteen cases of mercy killing were recorded in the U.S. between 1920 and 1993. Ninety two percent of these have occurred since 1973, suggesting one response to prolonged, high-tech dying, or fear of it.

The frequency of suicide among the terminally ill is in dispute. Studies of cancer patients have found suicide rates ranging from the same as, to ten times, the rate of the general population. The reported rates are probably substantial underestimates, however, since families are relatively unlikely to confess to a suicide and physicians or medical examiners unlikely to investigate deaths under these circumstances.

In addition, dying patients may be unwilling to admit to suicidal thoughts or plans for fear of being classified as "depressed" and being deprived of pain-relieving drugs.

Assisted Suicide And Euthanasia

Much has recently been written on the topic of assisted suicide and euthanasia, and I will add only a few passing observations:

First, there is a good deal of confusion about language, particularly concerning "assisted suicide" and "euthanasia". Though the terms are often used interchangeably, in this book the distinction is that in assisted suicide, while someone else provides the lethal agent, the person who is dying administers it; in euthanasia, someone else does the administration.

Assisted suicide is probably easier on the assistant's conscience than euthanasia, and does decrease the possibility of misunderstanding or abuses; however it also substantially increases the chance of other errors, such as the patient falling asleep before swallowing a lethal dose, or vomiting it up. On the other hand, where a dying patient has made the request for such help clear, but has lapsed into physical or mental inability to act, assisted suicide would no longer be an option.

Euthanasia may be "voluntary", where the person dying has made a request for it. It may be "non-voluntary", where a person who has not made her wishes on this matter known, is put to death; such people are often in a coma. "Involuntary euthanasia" might be the oxymoronic term if the person dying had expressed opposition to such a procedure. The more common word for this is murder.

Assistance may be "active", for example, administering a lethal injection; or "passive", such as disconnecting someone from life-support apparatus. Thus, Dr. Jack Kevorkian has carried out, exclusively, passive assisted-suicides. He has, in most cases, set up a carbon monoxide apparatus that requires the patient to open a valve to start the gas flow. (His first three suicides used intravenous potassium as the lethal agent. However, starting an i.v. line is not always easy, which may be why he switched to carbon monoxide.)

Some people believe there is an ethical or moral difference between active and passive euthanasia. However, as Lonny Shavelson notes, "...the major difference today between passive and active euthanasia is that people who believe in passive euthanasia are allowed to have it; for those who would choose active euthanasia, it is forbidden." Or, in the words of Dr. Pieter Admiraal, "the only thing passive about passive euthanasia, is the physician."

While there is an obvious difference between "killing" and "allowing to die", those who feel that there is a clear moral distinction between the two seem to be saying that we may allow an evil, choosing to die, by acts of omission, but may not commit the identical evil by acts of commission.

Would it then be morally acceptable to stay aboard a sinking ship to make room for someone else in a lifeboat, but not to jump out of a lifeboat for the same purpose? Why is it legal and ethical to act on a terminally ill patient's request to turn off her ventilator, but illegal and unethical to carry out the same patient's request for an overdose of morphine?

Is it not as much a choice to die from asphyxia or cancer as from an overdose? In the ethical triad of intent, method, and result, when the intents and results of passive (e.g. removing life support) and active (e.g. administering a lethal overdose) euthanasia are the same, it seems obtuse to ignore those similarities and focus on differences of method.

I would suggest that to turn off life support and let the patient die "naturally" hours or days later is often the immoral act. If a dying person's condition is so hopeless or painful that withdrawal of life-support is appropriate, then the most merciful action is that which brings this life to an immediate end.

In Margaret Battin's words, "To impose `mercy' on someone who insists that despite his or her suffering life is still valuable to him or her would hardly be mercy; to withhold mercy from someone who pleads for it, on the basis that his or her life could still be worthwhile for him or her, is insensitive and cruel."

"Active" Vs "Passive" Methods Of Dying

While the ethical arguments when someone in a coma has not made their desire for (or disapproval of) an expedited death known are more complex than in assisted suicide, the distinctions between "active" and "passive" are solely differences of method rather than intent, result, or consent, and of little independent ethical interest.

Except that method matters. When a physician removes food and water i.v.'s from a terminal patient, fully expecting and intending that the patient will die within a few hours or days as a result of this action, why does he or she not administer a lethal drug and put an end to the suffering? What is the lofty ethical principle being preserved here? Keeping one's hands clean? The dog pound treats injured strays better.

In fairness to physicians, a major reason for their aversion to "actively" hasten death is, I think, that it remains illegal to do so. As a result, a tormented patient is at the mercy of the doctor's willingness to take risks, put his/her own career on the line, and perhaps go to jail. In 1991 Dr. Timothy Quill [professor of medicine and psychiatry at the University of Rochester Medical School] gave a dying patient a prescription for a lethal quantity of barbiturates knowing that she intended to kill herself with them.

After Quill bravely (or foolishly) wrote about it in a letter to the New England Journal of Medicine, Rochester, New York prosecutor Howard Relin ("The People") tried to get a grand jury indictment on a charge of assisting a suicide, which carries a 5-to-15 year prison sentence. The grand jury (the people) refused.

Eleven physicians since 1935 have been charged with murder in mercy-killings (eight of these since 1980); most were acquitted, one committed suicide, none served prison time. Still, such legal sanctions discourage physicians from both assisted suicide and euthanasia even when all parties involved agree that it would be the right, as well as the best, thing to do.

And while individual doctors may carry out assisted suicide or euthanasia, as Anthony Flew notes, "...it is entirely wrong to expect the members of one profession as a regular matter of course to jeopardize their whole careers by breaking the criminal law in order to save the rest of us the labour...of changing that law."

Flew makes a valid point. Nevertheless, I find the withdrawal of food and water inexcusably cruel: the socially-acceptable torture of the helpless due to the moral cowardice of legislators, physicians, and the public.

Right To Refuse Medical Treatment

Oddly, in the midst of the heated assisted-suicide debate, there is little discussion of the generally-accepted, and legally undisputed, right to refuse medical treatment, even when the refusal will directly lead to death.

For example, about one of five kidney dialysis ("artificial kidney") patients' deaths is due to quitting dialysis, knowing that they will die within two weeks as a result of their decision. The average survival time is a little over a week.

There are also large numbers who refuse blood transfusions, chemotherapy or surgery for a variety of personal or religious reasons. The ethical distinction between refusing treatment in order to die, and suicide (assisted or not) for the same purpose, is not apparent.

Nevertheless, treatment-refusal often does not lead to a "good" death: one that is painless, dignified, conscious, and leaves time to review one's life and say good byes. Moreover, the definition of a "good" death varies from one person to the next.

For some people it is the least painful, for some it is the fastest, for some it is the most-delayed, for some it is the least disfiguring, for some it is that which best allows final conscious time with family and friends. Thus, all the more reason to respect the autonomy and choices of each individual.

In the United States treatment-refusal is the only legally-protected method for choosing death. It is available to (legally) competent and (indirectly, through proxy) non-competent individuals. It was asserted by courts at least as early as 1914: "Every human being of adult years and sound mind has a right to determine what shall be done with his own body." More recently, in Griswold v. Connecticut and Roe v. Wade, the U.S. Supreme Court reached similar conclusions, based on a constitutional right to privacy.

The ninth circuit Court of Appeals used this as the basis for overturning the Washington State ban on assisted suicide. A month later, the second circuit Court of Appeals overturned New York's ban on assisted suicide in April, 1996, but used the "equal protection" clause of the 14th amendment as the rationale, noting that terminally ill people who were on life-support could legally "pull the plug" while those not on life support had no similar option.

In June, 1997, the Supreme Court reversed the two Appeals Court decisions and ruled that there is no constitutional right to physician-assisted suicide. They seem to have been unpersuaded by the part of the [New Jersey Supreme Court] Quinlan (1976) decision that stated:

Constitutional protection from criminal prosecution where death is accelerated by termination of medical treatment pursuant to right of privacy extends to third parties whose action is necessary to effectuate the exercise of that right where the patients themselves would not be subject to prosecution or the third parties are charged as accessories to an act which could not be a crime.

Thus it remains legal to pull the plug on a respirator and let a permanently-comatose patient suffocate, but a crime, murder, to end that same life by a deliberate overdose of painkiller.

"Natural" Process Vs "Artificial" Intervention

The assertion has been made that there is a crucial difference between "pulling the plug" and deliberate overdose: one consists of letting a "natural" process continue while the other is an "artificial" interference with that process.

This claim is absurd. Why is it only ethical to die "naturally", after a long illness filled with highly "un-natural" life-extending medical procedures? Why is it unethical to choose to die swiftly and painlessly?

Scottish philosopher David Hume addressed the theological form of this argument around 1750:

"Were the disposal of human life so much reserved as the peculiar province of the Almighty that it were an encroachment on his right, for men to dispose of their own lives; it would be equally criminal to act for the preservation of life as for its destruction.

If I turn aside a stone which is falling upon my head, I disturb the course of nature, and I invade the peculiar province of the Almighty by lengthening out my life beyond the period which by the general laws of matter and motion he had assigned it."

Thus the argument by "natural physical law" fails: if one may intervene in some natural laws, one may intervene in others; and suicide cannot be opposed on these grounds. That is, one must also show that some laws of nature, but not others, should be left alone.

In any case, the "natural law" argument is fundamentally flawed, since it claims the existence of a natural physical law (in this case, that suicide is contrary to the "law of self-preservation") as the justification to enforce obedience to that same law.

However, to the extent that what is called a "natural law" really is one, it doesn't need legislative or moral reinforcement; for example, the "law of gravity" seems to work equally well with or without human approval.

Consequences Of Making Assisted Suicide Illegal

There are numerous cases of desperate, hospitalized people carrying out desperate suicides. In one instance, a man dying of cancer, immobilized in a frame and partly paralyzed, poured lighter fluid on his chest and ignited it.

In another case, "One terminally ill seventy-eight-year old, who was intubated and connected to life-support systems despite repeated requests to be left alone to die, switched off his own ventilator during the night and suffocated. He left a final message for his attending physician: `Death is not the enemy, doctor. Inhumanity is.' "

In Richard Momeyer's words, "A decent society finds ways of caring for those even in the most extreme distress; rarely is it the case that such caring is best done by encouraging death, either through suicide or euthanasia.

Rarely, I said, but not never. For neither is it the case that in a decent society we would burden those for whom death is in their best interest with the sole responsibility for ending their lives, any more than we burden everyone with sole responsibility for sustaining their lives when this is best..."

One of the ironic and presumably unintended results of making assisted suicide illegal is the pressure it puts on the old, infirm, and ill to kill themselves while they are still able to do so, and sooner than they would if they could count on help. Part of author Arthur Koestler's suicide letter addresses this issue:

"After a more or less steady physical decline over the last years, the process has now reached an acute state with added complications which make it advisable to seek self-deliverance now, before I become incapable of making the necessary arrangements."

Nobel physicist Percy Bridgman, dying from cancer, shot himself after his physician refused to help him die. He left the following note: "It isn't decent for society to make a man do this thing himself. Probably this is the last day I will be able to do it myself."

Koestler's and Bridgman's concern was not without foundation. Sometimes people wait too long. AIDS patients are particularly prone to suicide, but doctors who have many AIDS patients say that they have often seen these people prepare to kill themselves, but then become demented from their disease, and become unable to carry out their plans.

What should physicians do under these circumstances? Margaret Battin, a medical ethicist, argues:

"The physician's obligation is not only to respect the patient's choices, but also to make it possible for the patient to act upon those choices.

This means supplying the knowledge and equipment to enable the person to stay alive, if he or she so chooses....But it may also mean providing the knowledge, equipment, and help to enable the patient to die, if that is his or her choice... To restrict the right to die to the mere right to refuse unwanted medical treatment and so be "allowed" to die...is an indefensible truncation of the more basic right to choose one's death in accordance with one's own values."

On the other hand, the capability of committing suicide sometimes decreases the perceived need to do so prematurely. In 1994, George Kingsley was a 48 year-old man with AIDS. He collected the pills he intended to use and gave away many of his possessions.

"[Having the means to kill myself] has made my every day better, much much better," he said. "It has diminished my horror, as though I was facing an enemy on a battlefield stark naked and now I have armor."

Data from the Netherlands are consistent with this idea. Twenty-two percent (29/131) of a group of AIDS patients died by physician-assisted suicide (PAS) or euthanasia, compared to about two percent of all deaths. Based on an examination of each case, "[There was not] any substantial shortening of life by euthanasia/PAS...most of these patients would have died naturally within one month."

When physicians single-mindedly fight against death, it is, too often, at the expense of their equally important obligation to ease suffering.

It is a medical atavism based on an acute-illness model that doesn't apply: "If we can pull them through this crisis, they'll recover sufficiently to have a worthwhile remaining life." In many situations, they won't. The use of so-called "heroic" measures to maintain and resuscitate a terminally ill person who wants to die can better be described as "killing slowly and without mercy".

Physicians' And Nurses' Views

From Australia comes an eloquent Open Letter to the State Premier [Governor] of Victoria:

"...Each of us who has signed this letter has personal experience of treating terminally-ill patients whose condition has moved them to ask for assistance in suicide and each of us has, on occasion, after deep thought and lengthy discussion, helped such a patient to die....We have assisted patients to end their lives and we know others who have. We believe that we have acted in the best tradition of medical ethics, offering our patients relief from pain and suffering in circumstances where it would have been an act of cruelty to deny them.

We respect life. All of our professional training and work deepens that respect. However, the reality is that there are some patients who are beset by physical and mental suffering which is beyond the reach of even our most sophisticated efforts at control. When such patients clearly and repeatedly express a rational plea for help, it is out of respect for them that we have felt compelled to act.

However, as long as the law maintains that our behaviour is criminal, there will be numerous patients who will die in unnecessary misery. There are many who cry out for help and who are denied it by doctors who may sympathize with their plight but who are unwilling to break the law.

There are some who attempt to end their lives unaided and who botch the attempt and survive with their misery redoubled. There are others who may be helped by a doctor but who, for fear of incriminating their friends and family, must choose to die alone without the chance to say farewell."

Increasing numbers of doctors and nurses throughout the world have reached similar conclusions. The Medical Journal of Australia published a 1988 survey that found 60% of physicians in Victoria wanted the law changed to de-criminalize assisted suicide under some circumstances.

Seventy-eight percent of nurses in Victoria agreed. Of those Australian doctors who treated incurably ill adult patients, 29 percent had "actively" hastened the death of some who had asked to die; 80 percent of them had done this more than once.

In another state, New South Wales and the Australian Capital Territory, almost half of 2000 surveyed physicians had been asked to carry out euthanasia; 28 percent had done so.

A survey of California physicians arrived at generally similar numbers, with 23 percent of doctors having quickened a patient's death.Among San Francisco Bay area doctors with substantial AIDS practices, it was 53 percent. A more recent national sampling found 7 percent of U.S. physicians had written lethal prescriptions or given lethal injections. Most had done so infrequently, but one reported assisting 175 deaths.

Nurses act in much the same way. 17 percent (141/852) of American critical-care nurses surveyed had been asked by patients and/or patients' families to carry out euthanasia (which included high doses of pain medication that results in both pain control and life shortening; but excluded withdrawal of life support equipment); 16 percent (129) had done so, and an additional 4% (39) said they had hastened patients' deaths by withholding life-sustaining treatment ordered by a physician. Most said they had done these three or fewer times; however 5% said they had done so 20 or more times.

In Canada, 44% of surveyed physicians said that physician-administered euthanasia was sometimes justified. 51% said that the law should be changed to permit patient-requested active euthanasia.

In the Netherlands, where both have been more-or-less openly practiced since 1973, physician approval is around 80-90 percent.

In the U.S., medical opinion is closely divided. A 1993 survey of 938 doctors in Washington State found that half supported physician-assisted suicide in some cases, while 39 percent said it was never justified. Smaller numbers (42%) felt that it was acceptable for the physician, rather than the patient, to administer the lethal overdose, while 48% said it was not.

Interestingly, psychiatrists were most likely to support physician-assisted suicide; cancer specialists least likely. Female doctors were significantly more favorable toward assisted suicide than were their male colleagues. One wonders if psychiatrists and female physicians might also be higher in measures of empathy and compassion.

A more recent study, published in 1996, found increased physician support. Sixty percent of the Oregon doctors most likely to work with terminally-ill patients (out of 2,761 responses) favoured physician-assisted suicide under some circumstances.

Older doctors were more approving than younger ones; perhaps they are more realistic about the limits of medicine. Catholics, non-denominational Christians, and Mormons were less likely to approve than were other religious affiliations. Twenty-one percent of these doctors had been asked to write a prescription for a lethal drug dose in the previous year; seven percent had done so.

Meanwhile in Michigan, 77% of doctors felt that physician-assisted suicide should either be explicitly legalized (40%) or that there should be no law at all concerning it (37%); only 17% said it should be illegal. Thirty-five percent said that they might carry out such assistance, if legal. Among Michigan cancer specialists, 18 percent admitted to assisting in suicide(s) and 4 percent to carrying out euthanasia.

The American Medical Association's governing body recently reaffirmed its long-standing opposition to physician-assisted suicide, while simultaneously respecting a dying patient's wishes concerning treatment and maintaining the position that a doctor may withdraw all life support treatment, including food and water, from a patient who is in an irreversible coma.

To hold these views simultaneously is an impressive intellectual feat. However there is increasing protest. One delegate argued that the official AMA position "...fails to respond to the crying need of our patients in prolonged agony." Another said he was amazed by the number of fellow doctors he had polled who had admitted assisting suicides.

Significantly, a large majority, almost 90 percent, of doctors and nurses surveyed said that they would not want treatment if they had severe dementia or were in an irreversible coma.

In the case of a possibly-reversible coma, 70 percent of the nurses and half of the physicians said that they would not want treatment. In the words of the study's authors, "...physicians and nurses, who have extensive exposure to hospitals and sick patients, are unlikely to wish aggressive treatment if they become terminally ill, demented, or are in a persistent vegetative state. Many would also decline aggressive care on the basis of age alone..."

Yet they are willing to inflict treatment on patients in comparable circumstances. In the hypothetical case of a demented elderly patient with life-threatening gastro-intestinal bleeding, physicians were more than twice as likely to want only palliative [comfort] care if they were the patient than if the patient were a stranger.

This attitude is also seen in "active life termination" issues. In interviews with 155 cancer patients, 193 members of the public, and 355 oncologists (cancer docs), about two thirds of the patients and public thought doctor-assisted suicide or euthanasia were acceptable for patients in uncontrollable pain. Less than half of the physicians agreed; however, almost one in seven had carried out such acts.

Public Opinion

Non-medical opinion has also moved in the direction of increased acceptance of life termination. Barbara Logue has collected a series of public opinion surveys published between 1937 and 1991. They all show a gradual, but remarkably steady, shift from about 2:1 opposed to euthanasia/assisted-suicide to 2:1 in favor.

What is most striking about these data is that every multi-year poll shows increasing approval for every time interval. This was true irrespective of who (Gallup, Harris, Roper, General Social Surveys) carried it out or how the questions were worded.

A typical survey question, from Harris polls between 1973 and 1985 is: "Do you think the patient who is terminally ill, with no cure in sight, ought to have the right to tell his doctor to put him out of his misery, or do you think this is wrong?"

The response to this particular question went from 37%-right : 53%-wrong to 61%-right : 36% wrong over those 12 years. When these questions were asked only to the elderly, whose interest in such matters is least likely to be abstract or hypothetical, a similar pattern of increasing approval was also seen.

The impetus for this shift has not come from the medical, legal, or political establishment, which has, in typical conservative fashion, generally resisted change. Rather, the pressure for change has been the experiences of millions of the slowly dying, their families, and increasing numbers of their physicians.

from suicide and attempted suicide by geo stone.