Physician-assisted suicide: progress or peril? Christine k. Cassel editors’ summary

CHRISTINE K. CASSEL

argues that physician aid in hastening death does not necessarily

violate professional standards, and sometimes enhances patient care

during the dying process. The centerpiece of her argument is that

the procedures for helping dying patients during pain and suffering

are sometimes indistinguishable from assisted suicide and euthanasia.

Arguments against these actions look duplicitious and self-serving

when faced with clinical activities such as giving high doses of morphine

to make the dying unconscious or to relieve their suffering while

hastening their death. Cassel suggests that some moral reasoning about

caring for the dying actually disguises a - reluctance to face death, and

helps to hide from public accountability some of the actions physicians

take at the bedside.
The ethical and legal issues of physician-assisted dying are much in need of discussion among the professions and the public. The debate about physician-assisted suicide (PAS) is a perfect example of the tension between what one might call the rule-based or principle-based approach to medical ethics and newer ways of thinking about medical ethics or questions of values in health care. These ways are more experimental, grounded in narrative and in case-based analysis, more inductive than deductive, and, to use an older term, “situational.” A lively discussion has already occurred about the conflict between these two approaches to solving problems in ethics and doing research in ethics. The problem of the physician’s role at the end of life and in particular the question of the active role of the physician in assisting with dying is one that really forces us to examine these theoretical questions. There is some clarity to be gained by understanding the differences between these approaches and the contribution of both to resolution of a complex and contentious question.
Some critical questions
To begin, I pose some questions. What does it mean when ethicists claim that there is a strict proscription against physicians helping people to die; that is to say, assisting in suicide or active euthanasia? I know many excellent clinicians – eminent, highly respected leaders of medicine – who have assisted in dying and who will say, usually quietly, when you talk with them, “Well, of course there was that one patient or those two patients, and that was a special circumstance.” We have a firm rule that says we do not do this, and yet almost everyone can think of exceptions that they might find morally acceptable on one term or another. So these are the main questions: “Are these doctors murderers?”, or “Is the rule wrong?”, or “Are we somehow wrong in thinking about the way we use or apply rules in medical ethics?” The arguments, pro and con, have been fairly well aired and codified by now.

The arguments in favor of allowing physician assistance in dying in some circumstances appeal to the right of the patient to decide about care at the end of life, claims to dying with dignity, and arguments from ethicists that allowing to die is morally the same as causing to die if one’s intention is benevolent. The arguments against allowing physicians ever to hasten death intentionally are either Hippocratic and fundamental (“We don’t do this; doctors don’t kill”) or pragmatic (worries about the slippery slope and what will happen to vulnerable patients where these practices might be abused). Interestingly, both of these arguments – pro and con – are concerned about better care of dying patients. This commonality needs greater emphasis because it affects the number of patients who are not receiving adequate comfort care in their last days, potentially far greater than those asking for euthanasia. The widespread lack of competent palliative care is related to a problem that rule-based ethics presents: what happens to decisions and clinical care when you come close to the live, close to the bright line of actively assisting

in dying?

The doctrine of “double effect” emphasizes the difference between what we intend or expect (to relieve pain) and what happens (death is hastened) when we give morphine to a patient in great pain. But what is the result of having a clear and precise bright line that says “We give morphine to treat pain but not to hasten death?” Does the bright line guard against abuses, or on the contrary, does it create a barrier to the effective care of patients who are dying? I believe that the bright line is less effective as a barrier against abuse of the vulnerable than it is as a barrier to physicians’ intense caring for their dying patients.

To some degree, standards of comfort care have also improved. The hospice movement has made enormous progress since the 1970s, when it began, in promoting the idea that it is not always the prolongation of life that is the most important goal of treatment and that in certain situations comfort care is a much more important goal. Although we need more progress in this area, we have less worry about the addictive characteristics of narcotic analgesics and other pain-killing medications. We have a little less worry about the double effect; that is to say, “If I give this patient adequate pain control might it depress respiration and hasten death?” In the case of a patient with a terminal illness, we have been taught that it is acceptable not to worry about hastening death if comfort is the primary goal. However, the recent debate about physician-assisted suicide has made people more, not less, nervous about that issue.

In spite of all this progress, hospice still remains a sort of “ghetto” in medicine. We transfer our patients to hospice programs and often never see them again. We turn to specialists who care for dying patients rather than accept that this ought to be part of what every physician does when his or her patient becomes terminally ill. In most academic centers, we make palliative care rather invisible. Community hospitals have actually done a much better job than most of our teaching hospitals at establishing hospice programs within the hospital setting. But even there, often house staff are transferred off the case when the patient has gone into hospice, as if there is nothing left to learn from or give to that patient. We thus make it invisible to the people who are the most important for the future – the trainees who are learning to become physicians.

We have learned this from hospice experts about most patients: thoughtful and competent comfort care can make the dying process gentle and free from suffering – certainly free from pain, but nevertheless perhaps not always free from suffering. In fact, there is no evidence that even all physical suffering associated with the terminal illness can be relieved. All too often we focus only on pain as if it were the only symptom that accompanies death, when in fact there are many other symptoms afflicting dying patients that are much more difficult to treat than pain. These sometimes are protean, and can be difficult to diagnose and to understand, but often are unremitting and terrible for the patient experiencing them: symptoms such as nausea, vomiting, shortness of breath, inability to handle secretions, and nightmares and episodic, terrifying delirium, sometimes caused by the very medications doctors give to treat the pain. Also, patients have incontinence, immobility, weeping sores that will not heal – all these require specific forms of treatment and surely contribute to the suffering of the person who is dying. They certainly contribute to the fears people have about the end of life. These symptoms as a source of suffering cannot always be abolished by medical treatments, unless we include medically induced coma as a therapy. Some people argue “Well, if we just treated pain well enough, then there would be no demand for assisted suicide or active euthanasia.” I believe that is not true; there are things besides pain that are much more difficult to treat adequately.

Even if we could treat these symptoms adequately, and there are ways of doing so, there are some experts in palliative care who oppose the idea of active assistance in dying. They argue a principle of “Let them sleep, before they die,” – a heavy sedation so that patients become unconscious and die of dehydration in that state. This is not considered active euthanasia. By some people it is considered, for physicians, to be more humane and more ethical than euthanasia.
Death with dignity
But even if we accept that idea, from the patient’s perspective there is still one very important consideration that is not addressed by any of these medical approaches. That is the problem of dignity. This is what the public talks about: death with dignity. It is an old idea. Nonetheless it is something that we all need to understand about the public debate. If we understand it, physicians will become better and get greater rewards in the practice of medicine. But dignity is much harder to achieve than relief of pain, especially in our modern hospitals, where in the USA 80% of people still go to die.

People are afraid of the symptoms that threaten personhood, not so much the pain or fen physical suffering, but the loss of dignity and selfhood. The classic example here is a patient with acquired immunodeficiency syndrome (AIDS) anticipating AIDS dementia, having seen friends who have gone through this losing their very sense of self and dignity, a descent into a kind of absurdity or degradation, not being able to say goodbye on your own terms but totally dependent on others, without awareness or control. Whether one sees this in a religious or a secular context, it is important somehow to derive some kind of meaning from this most profound moment in life-death itself. We often erase that meaning with modern medical technology. Unfortunately, all too effectively we obliterate it. Death ought to be one of the most profound and meaningful experiences in human life. To be with someone who is dying and to be witness and companion I consider to be one of the most privileged moments of being a physician, comparable only to being present at a birth. And yet, how few times in modern medicine do physicians allow themselves to take part in the personal significance of death.

What the patients are asking is that physicians give this meaning back to them. In fact, modern ways of dying have made it harder to recognize and capture that meaning. This is described brilliantly by historian Philip Aries in his book Western Attitudes to Death. He describes how difficult it is in modern medicine to pinpoint the moment at which a patient dies. There are many “little” deaths along the way. So even if you wanted to have a ceremony or say something meaningful about a person’s death it is hard to know at what point to do it. Indeed, Dr Lewis Thomas, who had a way of always capturing in a very clear and profound way what people are thinking, has said this too: “And so we have come to view death as a failure, as opposed to an inevitable and meaningful part of life, and because of this we have lost the old feeling, the feeling of respect for dying and all of the awe.” He uses the term “awe,” a word rarely heard in modern medicine. I wonder how often physicians feel that sense of awe in the presence of the end of the life of a human being.

Dignity is an important need and not something we can diminish by categorizing it as just a popular political slogan. People are asking for something concrete when they are asking for death with dignity. They are not necessarily asking for suicide or euthanasia, but in some way see these as the only dignified alternatives, since they fear medicine will take over their death. Addressing this need for dignity might be more profoundly significantly human than all the other caring that physicians do. Many patients are more willing to put up with pain if they can just have dignity. Thus, I think that we need to include that in our goals in the treatment of patients at the end of life.

It was Kevorkian and his initial activities in 1990 that prompted many scholars to begin thinking seriously about this issue. The first patient he assisted in suicide, Janet Adkins, was a 53-year-old woman with a rather mild case of early Alzheimer’s disease. When she died, most experts in medical ethics immediately stood up and said “We don’t do this; this is not acceptable physician behavior.” I could not help but think, “It’s more complicated than that.” To believe it is more complicated is not to approve of Kevorkian or what he is doing. Some ethicists, including Diane Meier, agreed that there needed to be some medical voice saying, “This issue deserves deep consideration and discussion within the profession.” She and I wrote an article published as a “Sounding board” in the New England Journal of Medicine. We called for a more thoroughgoing discussion among physicians and ethicists, going beyond reliance on a simple rule.

In response to that publication we received dozens of letters from physicians ─ not sent to the Journal ─ but to us personally. These letters thanked us for raising the issue, and many of them related personal experiences. One after another these stories began to unfold, either about physicians who had helped a patient to die and wanted to talk about it, or about a physician who had refused and now regretted it. It was a fascinating tapestry of medical stories. One of the stories that came out of this interchange was the eloquent account of “Diane” by Timothy Quill that was published the following year in the New England Journal of Medicine (1991) and that led to his summons to appear before a Grand Jury in Rochester, New York. He had to face possible indictment for actively assisting in the suicide of his patient, Diane, suffering from leukemia, who took an overdose of barbiturates that he had prescribed for her.

These events suggested something about the power of the individual case, the “story” or the narrative analysis of the situation in exploring the boundaries of right and wrong. If you listen to informal conversations, even in the elevators at major university medical centers, the power of the story emerges. When Quill’s article came out many people commented that even though they disagreed with his action, they would like to have that man for their own doctor! So even if one is opposed in principle to physician assistance in dying, there is a quality about the sympathy, compassion, and the relationship that makes people think “Well, if it were me, I would want to have that option for myself.” This observation could be seen as a kind of hypocrisy, if we say that we do not condone the practice, that it is not consistent with medical ethics. Yet many physicians feel that when the time comes they will have a little stash of morphine or barbiturate and they will be able to take control of the end of their own lives. We are not willing to offer to our patients an option that we feel that we might want to make use of

ourselves.

More candour and more acknowledgment of uncertainty in this area is important. Many ethicists point to the Hippocratic tradition, arguing an ancient proscription against a physician’s actions causing death. It is true that the Hippocratic oath says this, “I will neither give a deadly drug to anyone if asked for it nor will I make a suggestion to that effect.” Very clear and unambiguous. This statement was especially important in Hippocrates’ time as he distinguished his “scientific” creed of medicine from other more magical systems prevailing then. The historical context is very important. Physicians now often turn to Hippocrates to support something that they believe. Yet there are also many things in the Hippocratic oath that physicians reject these days. For example, there is the proscription against doing surgery, a proscription against abortion, even a proscription against taking “fees” for teaching medicine! We have chosen to leave these Hippocratic rules behind in the name of medical progress and social change. It is important not to undermine the fundamental importance of this life-and-death issue, but one should be clear that, just because a statement is in the Hippocratic oath, it is not automatically a rule that we always have to follow. We should look instead to the basis of this rule.

If one looks to the next line, in fact, one learns more about the underlying reasons. It says “In purity and holiness, I will guard my life and my art.” This section does not say anything about patients and what patients need. It emphasizes guarding of professional integrity, as important to the public respect of the guild of practitioners, then as now. The ethical analysis now about why doctors should or should not assist in dying has to do with the same concern that, if doctors begin to allow themselves to actively assist patients to die, this will erode the integrity of the profession. We have to “guard our life and our art.” I certainly have enormous respect and love for the profession and would not want its integrity to be eroded, but we should at least realize that this claim is not based on patient care values. It is a claim based on a very strict and ancient notion about the profession and about what its first principles ought to be. In some ways it is more concerned with the purity of the profession than it is with the needs of the patient. This need for purity and unwillingness to engage in complex or ambiguous situations could be seen as “excessive scrupulosity.” Hippocrates’ writing, especially the rule-based approach, is deeply rooted of course. But it is not always reflective of the real and lived values of our contemporary society, our individual relation- ships, or even our commitments to healing and solace.

As we look at what actually happens in the care of dying patients, we should consider the possibility that a fundamental construct of medical ethics actually obscures an important reality about the choices that face us. The construct I refer to is the notion of double effect ─ and the related importance of intention or expectation ─ that has been very useful in medical ethics. If one cares for a patient who has cancer that has spread to lung and bone and is suffering from terrible pain, morphine is the drug of choice. The only way to treat that patient’s pain adequately is perhaps to hasten his or her death. Morphine may reduce respiratory drive especially if the lung function is already impaired, but, if this is the patient’s preference, then it is morally accepted. The physician does not intend for the patient to die, but does intend to treat the pain. Hastening death is an unintended side-effect. In fact the double effect doctrine has been very useful in persuading physicians to treat pain adequately in the dying patient.

Yet this doctrine might have outlived its usefulness, or at least has had some unintended side-effects itself. It has created an illusion that we do not intend or expect death in such cases. Because of that, it has allowed us not to confront death, not to take part in it, not to understand the issue of dignity, and finally, not to obtain rewards that we might get from actually participating in helping a patient to die in a meaningful and dignified way. In the double effect doctrine, we must believe that we are not intending death, which can begin to seem like denial at best, or self-delusion at worst. We fool ourselves into thinking that death is an accident, or as Lewis Thomas would have said, “a failure.” We were really just trying to treat the pain and it was a failure of medicine that the patient died in the meantime. The following clinical examples, which are not bizarre or unusual ones, demonstrate this problem.
Case 1
Discontinuing ventilation in a patient who has end-stage lung disease

is a decision that physicians have to make all the time. In a patient who

is conscious, the primary symptom is not pain. Probably the most

frightening symptom of terminal illness is suffocation ─ dyspnea, air

hunger ─ and the best treatment for it is morphine. One of the reasons

for morphine’s effectiveness is that it suppresses the drive for air, so in

fact the patient lives a shorter period of time because he or she is not

struggling to stay alive. In that patient to whom we give morphine

once we discontinue the ventilator, how is it possible to say we are

not intending that person to die? What kind of an illusion is this?

Do we really believe that the patient’s demise is just an unfortunate

side-effect of the treatment of the dyspnea? Using this construct

reinforces our own denial and makes it possible for us to continue to

practice medicine thinking that we are not dealing directly with death,

and confronting this most challenging and sometimes personally

threatening fact of human mortality.

person in a persistent vegetative state. Consider the case of Nancy

Cruzan and the thousands of people like her who did not want to be

kept alive in a persistent vegetative state. The Supreme Court has

supported the concept that nutrition and hydration are medical

treatments that the patient, or family by proxy, can refuse. But there

is no double effect here. When you discontinue nutrition and

hydration in a patient in a continuous vegetative state, how is it possible

that you are not intending that person to die? We usually rationalize

it by saying we are respecting our patient’s right to refuse treatment,

rather than embrace a right to die.

Case 3
Consider the next case from an ethics committee. A competent patient

is dying of widespread swelling ovarian cancer. She had draining, foul

smelling wounds; she could not move because of massive ascites

(swelling), and became delirious and hallucinated with the morphine

they were giving her. She hated it. She requested an overdose saying

she was ready to die. The committee decided they would recommend

sedation so that she would become unconscious, then allow her to die of dehydration. The question here too, is whether death was intended, and

whether it matters morally. Whose needs are being met by this decision?

Is it the patient’s need or is it some need of the committee members to

think that they somehow did not actively create that death. There are

numerous instances of this sort when we make rather bizzare decisions

and we need to ask ourselves are we doing it for our good or the patient’s

good.
Helping patients to die
As a parable, perhaps a little extreme but illustrative nonetheless, I relate a story from anthropology. A pre-literate nomadic people called the Tiwi revered aged people until they physically could no longer keep up with the tribe, in which case it became impossible to keep them around. When the old person became frail or sick, the family performed a ritual called “covering her up.” Her family in loving ceremony -while the rest of the tribe went on ahead ─ stayed behind with the elderly person so they could bury her in the ground up to her neck. Then they would leave. They did not kill her -nobody killed her. She was still alive the last time they saw her. Of course she was too weak to get out by herself and she would inevitably die. I was struck by that story and I wondered how many of end-of-life decisions are rather like that. They usually are not as cruel because the person is not conscious, but in the same way we reassure ourselves that we are not actively causing the patient’s death. Yet our actions are just as directly

related to that outcome as were the families of the Tiwi elders. The strict ethical boundaries we have lived with for the last 20 years, which have helped us to deal with ethical problems at the end of life, may now be more of a barrier to effective care than they are moral guidelines that really help us along the way. Especially now physicians are so worried about the legal ramifications of active euthanasia and assisted suicide, they may back away from the dying patient, fearful that aggressive comfort care may be construed as hastening death. The more and more public this debate becomes, in fact, the less good we are at taking care of the symptoms of dying patients because of the worry about legal ramifications.

The “slippery slope” argument is a legitimate concern. Ethicists point out the social risks if we were to legalize physician-assisted suicide. What might happen, then, in a country such as the USA where not everyone has health insurance, many people have inadequate insurance, and there is a lot of discrimination against patients with certain kind of disease (for example, AIDS), and patients of certain socioeconomic and other groups. How would we prevent vulnerable people from being victimized by euthanasia? Another social risk that is raised is a concern that people might stop trusting their doctors, if they were worried that “You never know when they might kill you!” On a more fundamental basis, another concern is the possible loss of the reverence for life, which would be a tremendous loss.

There are serious concerns, but they are not inevitable consequences of a more open policy on physician-assisted dying. It is at least possible that, if we were openly to acknowledge that there are some circumstances when it is morally acceptable to assist a person to die, the social forces might work in the other direction. The abuse of this practice with “disvalued” people could be prevented by limiting it to competent patients. In fact, one wonders now that there is a much wider acceptance of foregoing life-sustaining treatment in the first place, whether such practice is in fact being abused already. Especially since we do not talk openly about it, we do not have any sort of accountability in this arena. We often make these decisions informally, and it may be that we are already discriminating against vulnerable populations. If we were to make the practice more open, more accountable, and have to defend it to one another, we might do a better job of preventing abuses. We cannot know which would occur without doing the experiment.

Ethicist Dan Brock argues that the motives are much more important in ethical analysis than the act itself, not whether or not we expect or intend the patient to die, but, much more significantly, whether the motive is benevolent and compassionate or not. If we could really stipulate this factor, it would be the best safeguard against abuses. What about trust of physicians? Perhaps it is true, as Leon Kass and other physicians argue, that we might erode the trust in the profession if we were actively to help patients to die. Nevertheless, it may be that physicians are already losing it, because patients think doctors do not understand the issue of personal dignity. They do not think they can get what they want from the physician at this most important time ─ at the end of life ─ when they are most needy. Janet Adkins might not have chosen to kill herself so early if she had trusted her doctors to do the right thing when her Alzheimer’s disease became so advanced that she would not have wanted to live anymore. The reason she felt she needed to kill herself was that she did not trust her doctors to do what she wanted on her terms.

Finally, let me turn to reverence for life. It is not at all clear to me that by hiding the reality of death from ourselves we are in fact generating greater reverence for life. It may be that, if we allowed ourselves to participate in this most profound moment and to deal with our own mortality in a way that doctors do not do now, it might give a renewed appreciation for the meaning of life as well as for death. I do not believe that continuing to draw a bright line against physician-assisted suicide ensures or even encourages improvement in end-of-life care. I have not seen this improvement yet.

Alongside all the debates, the reality is that hastening of death is already happening. Some physicians are occasionally finding themselves in a situation where assistance in dying seems the right thing to do. Earlier I mentioned my experience in getting all those “confessional” letters from physicians. Quill’s article led to many more letters sent to him that he turned into a book! He relates fascinating accounts of physicians struggling with this issue, many of whom have assisted patients in dying and would do so again.

We have to look at what happens in the real world. Examining the law in this area we find the same double standard. Modern courts seem to enact the same ambivalence that one sees within the medical profession. In every case in the USA when a physician has been indicted or has had to stand trial for causing the death of a patient, the physician has been acquitted. This is true even in cases that involved direct injection. An obvious interpretation of this phenomenon is that k the jury understands the human dimensions of this issue. In every single case when the doctor knew the patient, when the patient was terminally ill, and when this was clearly being done in a merciful way, with what Brock would call the right motive or the right intentions, the people who make up the jury seem to say that the law is wrong. That what this doctor did in this case is not culpable. So we have these laws on the statute books that we do not really respect, but that make the physician nervous about even discussing this issue with a patient. Then we have to ask if respect for the law, too, is at stake here. Are we better off with a covert process, in which we rely on the courage of the physician who might be willing to commit an illegal act for a patient for whom they have a long-standing relationship and continue to maintain the social fiction that “We don’t do this” because it is somehow better for the purity and holiness of the physicians’ art? Would it not be better to make it a more open, strictly limited but more account- able practice ─ risking losing the intimacy of it perhaps, but gaining in disclosure and scrutiny of this most important subject?