From: IAETF Update May-June 1995 (Pages 5-9)
Selling Death and Dignity
Advocates use case descriptions to show that
euthanasia or assisted suicide is sometimes justifiable.
Yet even the seemingly clearest cases can prove deeply troubling.
Dying is hard to market. Voters, many repelled by the image of doctors giving their patients lethal injections, rejected euthanasia initiatives in Washington and California. Learning from these defeats, Oregon sponsors of a similar measure limited it to assisted suicide, while still casting the patient in the role familiar from euthanasia advertising: the noble individualist fighting to exercise the right to die.
Although both assisted suicide and euthanasia have been presented as empowering patients by giving them control over their death, assisted suicide has been seen as protecting against potential medical abuse since the final act is in the patient’s hands. Yet opponents see little protection in assisted suicide: people who are helpless or seriously ill are vulnerable to influence or coercion by physicians or relatives who can achieve the same ends with or without direct action. (1) How could advocates counteract not only images of lethal physicians but images of grasping relatives, eager to be rid of a burden or to gain an inheritance by coercing death?
Supporters of assisted suicide and euthanasia have found the ultimate marketing technique to promote the normalization of assisted suicide and euthanasia: the presentation of a case history designed to show how necessary assisted suicide or euthanasia was in that particular instance. Such cases may rely either on nightmarish images of unnecessarily prolonged dying or on predictions of severe disability. The instance in which it is felt that most would agree it was desirable to end life is represented as typical. Those who participate in the death (the relatives, the euthanasia advocates, the physician) are celebrated as enhancing the dignity of the patient, who is usually presented as a heroic, fully independent figure.
How much truth is there in this advertising? Does this accurately describe what happens? Even in cases advocates believe best illustrate the desirability of legalizing assisted suicide or euthanasia, there is ample room to question whether the death administered in fact realizes the patient’s wishes and meets his or her needs. Advocates’ desire to dramatize these model cases, moreover, requires that they be presented in some detail — and this creates the opportunity to see the discrepancy between theory and practice with regard to assisted suicide and euthanasia.
Death on Request
The ultimate attempt to normalize euthanasia in the Netherlands and make it seem an ordinary part of everyday life was the showing in the fall of 1994 on Dutch television of Death on Request, (2) a film of a patient being put to death by euthanasia. Maarten Nederhurst, who created the film, found an agreeable patient and doctor by contacting the Dutch Voluntary Euthanasia Society.
The patient, Cees van Wendel, had been diagnosed as having amyotrophic lateral sclerosis in June 1993; he expressed his wish for euthanasia a month later. Severe muscular weakness confined him to a wheel chair; his speech was barely audible.
Almost 700,000 people saw the first showing of the film in the Netherlands. Subsequently, the right to show the film has been acquired by countries throughout the world. Prime Time Live excerpted and showed a representative segment to American viewers with a voiceover in English. Sam Donaldson introduced the program saying that it took no sides on the issue but added, “It is a story of courage and love.” (3) Only for the most gullible viewer.
In point of fact, the doctor, Wilfred van Oijen, is the film’s most significant person. He is the manager who can make “everything” — even death — happen. He is presented as someone who has accepted the burden of all phases of experience. The patient is nearly invisible.
The film opens with a chilly scene in winter — trees are bare of leaves, it is cold, wet, inhospitable — not a bad time to die. In an undershirt in his bathroom, the doctor combs his hair getting ready for just another day. His encounters will include treating a child of about ten months, a pregnant woman and a baby, and bringing death to Cees. The purpose of the film is to include euthanasia both as part of his daily burden as a doctor and as the natural course of events.
In the two house calls van Oijen makes to Cees, of most interest is the tension between the film’s professed message — that all want release from illness, the patient most of all –and the message conveyed by what is actually filmed. The relationship depicted is between van Oijen and Antoinette, who has called the doctor and clearly wants her husband to die.
The wife appears repulsed by her husband’s illness, never touching him during their conversation and never permitting Cees to answer any questions the doctor asks directly. She “translates” for him, although Cees is at this point in his illness intelligible, able to communicate verbally, but slowly, and able to type out messages on his computer. The doctor asks him if he wants euthanasia, but his wife replies. When Cees begins to cry, the doctor moves sympathetically toward him to touch his arm, but his wife tells the doctor to move away and says it is better to let him cry alone. During his weeping she continues to talk to the doctor. The doctor at no time asks to speak to Cees alone; neither does he ask if anything would make it easier for him to communicate or if additional help in his care would make him want to live.
Virtually the entire film is set up to avoid confronting any of the patient’s feelings or how the relationship with his wife affects his agreeing to die. Cees is never seen alone. Van Oijen is obliged to obtain a second opinion from a consultant. The consultant, who appears well known to the doctor, also makes no attempt to communicate with Cees alone, and he too permits the wife to answer all the questions put to Cees. When the consultant asks the pro forma question if Cees is sure he wants to go ahead, Antoinette answers for him. The consultant seems uncomfortable, asks a few more questions, and leaves. The consultation takes practically no time at all. The pharmacist who supplies the lethal medication — one shot to put Cees to sleep and another to help him die — seems only another player in this carefully orchestrated event.
Antoinette visits the doctor to ask where “we stand.” She wants the euthanasia over with. Cees has set several dates, but keeps moving them back. Now he has settled on his birthday, and they arrange for van Oijen to do it at eight o’clock after Cees celebrates by drinking a glass of port. Cees makes a joke that sleeping is a little death but this time his sleep will be a lot of death. Van Oijen tries to laugh warmly. Antoinette keeps her distance from the two and remarks that the day has gone slowly and it seemed eight o’clock would never come.
Antoinette helps Cees into bed in preparation for van Oijen to administer the first shot. Van Oijen smiles, gives the injection, and explains the medication will take a while to put Cees into a deep sleep. No one says goodbye. Only after the shot has put Cees to sleep does Antoinette murmur something to her husband. She then moves into the other room with the doctor to permit Cees to sink into a deeper sleep. After a few minutes, they return. When the doctor wants to place Cees in a more comfortable position, she withdraws again. After the second shot is administered, Antoinette and van Oijen sit next to the bed, both holding the arm that has received the injections. Antoinette asks if this was good, presumably wanting to know if it was “good” to kill Cees. Van Oijen reassures her. They leave Cees alone very quickly. On the way into the next room, Antoinette takes a note Cees wrote to her about their relationship and what it meant to him and reads it to the doctor. She seems to want to convey to him that they in fact once had a relationship.
From the beginning, the loneliness and isolation of the husband haunts the film. Only because he is treated from the start as an object does his death seem inevitable. One leaves the film feeling that death with dignity requires more than effective management; it requires being accorded personhood even though one’s speech is slurred or one needs to point to letters on a board or communicate through writing on one’s computer. Throughout the film, Cees’s wife denies him such personhood, as does the doctor, who never questions her control over all of the patient’s communications and even the doctor’s communication with Cees. The doctor and wife took away Cees’s personhood before ALS had claimed it.
A Good Death for Louise
An article featured on the cover of the New York Times Magazine in the fall of 1993 also used a case description to try to prove the value of assisted suicide to an American audience. (4) The article described the assisted suicide of Louise, a Seattle woman whose death was arranged by her doctor and the Reverend Ralph Mero, head of Compassion in Dying, a group that champions legalizing assisted suicide. Members of the group counsel the terminally ill, offer advice on lethal doses, convince cautious doctors to become involved, and are present during the death. Mero and his followers do not provide the means for suicide (the patients obtain such help from their doctors) and claim not to encourage the patients to seek suicide.
Mero arranged for a Times reporter to interview Louise in the last weeks of her life, offering Louise’s death as an illustration of the beneficial effects of the organization’s work. Yet the account serves equally to illustrate how assisted suicide made both life and death miserable for Louise.
Louise, who was referred to Mero by her doctor, had been ill with an unnamed, degenerative neurological disease. The reporter tells us that “Louise had mentioned suicide periodically during her six years of illness, but the subject came into sudden focus in May during a somber visit to her doctor’s office.” As Louise recounted it, “I really wasn’t having any different symptom; I just knew something had changed. I looked the doctor right in the eye and said, ‘I’m starting to die.’ And she said, ‘I’ve had the same impression for a couple of days.’” An MRI scan confirmed that the frontal lobes of Louise’s brain had begun to deteriorate, a sign that led her doctor to warn Louise that her life would most likely be measured in months, perhaps weeks. Louise said her doctor explained that “she didn’t want to scare me… she just wanted to be honest. She told me that once the disease becomes active, it progresses very fast, that I would become mentally incapacitated and wouldn’t be myself, couldn’t care for myself anymore. She would have to look into hospice care, or the hospital, or some other facility where I would stay until I died.”
We are told that Louise did not hesitate with her answer. “I can’t do that… I don’t want that.” The reporter continues, “Her doctor, Louise thought, looked both sad and relieved. ‘I know, I know,’ the doctor said. ‘But it has to come from you.’” Louise makes sure that they are both talking about suicide and says, “That’s what I’d like to do, go for as long as I can and then end it.”
What has happened between Louise and her doctor? The doctor’s quick affirmation that Louise is starting to die, even before the MRI scan confirms her decline, is disturbing. She prefaces a grim description of Louise’s prognosis with assurance that she does not want to scare her. The doctor’s relief when Louise indicates that she is choosing suicide gives us some feeling about her attitudes toward patients in Louise’s condition.
As the account continues, the doctor indicates that she would be willing to help, had recently helped another patient whom Louise knew, and said she would prescribe enough barbiturates to kill Louise. To avoid legal trouble, she would not be there when Louise committed suicide. They exchanged several hugs and Louise went home. The doctor called Compassion in Dying for advice. The reporter quotes the doctor as saying about contacting Mero, “I was ecstatic to find someone who’s doing what he’s doing…. I loved the fact that there were guidelines.”
On the phone, Mero advises the doctor on the medication to prescribe and then visits Louise, suggesting that he is prepared to help Louise die before knowing or even meeting her or in any way determining whether she meets any guidelines. When he does meet Louise, she asks him at once if he will help her with her suicide and be there when she does it and she is almost tearfully grateful when he says yes. He repeats many times that it has to be her choice. Louise affirms that it is, saying that all she wants “these next few weeks is to live as peacefully as possible.” Louise seems concerned with being close to others during her final time and with spending what is left of her life in an environment of loving leave-taking.
The doctor is concerned that Louise’s judgment might soon become impaired: “The question is, at what point is her will going to be affected, and, if suicide is what she wants, does she have the right to do it when she still has the will?” The doctor, like Mero, says she does not want to influence the patient, but worries that Louise might not act in time. “If she loses her mind and doesn’t do this, she’s going into the hospital. But the last thing I want to do is pressure her to do this.”
Yet the closeness before dying that Louise seemed to want is lost in the flurry of activity and planning for her death as each of those involved with her dying pursues his or her own requirements. At a subsequent meeting of Mero and Louise, with Louise’s mother and her doctor also present, Mero gives Louise a checklist in which he reviews steps to be taken during the suicide from the food to be eaten to how the doctor would call the medical examiner.
The doctor indicates she will be out of town for the next week, but that she has told her partner of Louise’s plans. “You don’t have to wait for me to get back,” she tells Louise, hinting, the reporter tells us, that it might be a good idea not to wait. The doctor was more direct when alone with Louise’s mother, telling her that she was afraid Louise might not be coherent enough to act if she waited past the coming weekend.
The doctor and Mero discuss how pointed they can be with Louise, wanting her to make an informed decision without frightening her into acting sooner than she was ready. They hoped, “she would read between the lines.” Mero assures the reporter that he always wants to err on the side of caution. Nonetheless, a few days after the meeting, Mero called the reporter in New York, asking her to come to Seattle as soon as possible. He knew she was planning to come the following week, but he warned her not to wait that long.
The reporter leaves immediately for Seattle and finds Louise in a debilitated condition. She is in pain, getting weaker, and speaks of wanting to end her life while she can still be in control. She says she is almost ready, but not quite. She needs about a week, mainly to relax and be with her mother.
The reporter blurted out, “Your doctor feels that if you don’t act by this weekend you may not be able to.” Her words are met with a “wrenching silence” and Louise, looking sharply at her mother, indicates that she hadn’t been told that. Her mother says gently that is what the doctor had told her. Louise looks terrified and her mother tells her its OK to be afraid. “I’m not afraid. I just feel as if everyone is ganging up on me, pressuring me,” Louise said, “I just want some time.”
Louise’s mother was growing less certain that Louise would actually take her own life. When she tried to ask her directly, Louise replied, “I feel like it’s all we ever talk about.” A friend who had agreed to be with Louise during the suicide is also uncomfortable with Louise’s ambivalence but is inclined to attribute her irritability and uncertainty to her mental decline. When Louise indicates that she would wait for Mero to return from a trip and ask his opinion on her holding on for a few days, the friend indicates that this was a bad idea since the change in her mood might be missed by someone like Mero who did not know her well.
Like many people in extreme situations, Louise has expressed two conflicting wishes — to live and to die — and found support only for the latter. The anxiety of her doctor, Mero, her mother, and her friend that Louise might change her mind or lose her “will” may originate in their desire to honor Louise’s wishes, or even in their own view of what kind of life is worth living, but eventually overrides the emotions Louise is clearly feeling and comes to affect what happens more than Louise’s will. Although those around her act in the name of supporting Louise’s autonomy, Louise begins to lose her own death.
Despite predictions, Louise makes it through the weekend. Over the next days she speaks with Mero by phone, but he tells the reporter he kept the conversations short because he was uncomfortable with her growing dependence on his opinion. Nevertheless, after a few such conversations, the contents of which are not revealed, Louise indicated she was ready; that evening Mero came and the assisted suicide was performed. A detailed description of the death scene provides the beginning, the end, and the drama of the published story. Louise did not die immediately but lingered for seven hours. Had she not died from the pills, Mero subsequently implied to the reporter, he would have used a plastic bag to suffocate her, although this violates the Compassion in Dying guidelines.
Everyone — Mero, the friend, the mother, the doctor, and the reporter — all became part of a network pressuring Louise to stick to her decision and to do so in a timely manner. The death was virtually clocked by their anxiety that she might want to live. Mero and the doctor influence the feelings of the mother and the friend so that the issue is not their warm leave-taking and the affection they have had for Louise, but whether they can get her to die according to the time requirements of Mero, the doctor (who probably cannot stay away indefinitely), the reporter (who has her own deadlines), and the disease, which turns out to be on a more flexible schedule than previously thought. Louise is explicit that the doctor, mother, friend, and reporter have become instruments of pressure in moving her along. Mero appears to act more subtly and indirectly through his effect on the others involved with Louise.
Without a death there is, of course, no story, and Mero and the reporter have a stake in the story, although Mero has criticized Jack Kevorkian to the reporter for wanting publicity. The doctor develops a time frame for Louise; her own past troubling experiences with a patient who was a friend seems to color the doctor’s need to have things over with quickly and in her absence if possible. Louise is clearly frustrated by not having someone to talk to who has no stake in persuading her.
Individually and collectively those involved engender a terror in Louise with which she must struggle alone, while they reassure each other that they are gratifying her last wishes. The end of her life does not seem like death with dignity; nor is there much compassion conveyed in the way Louise was helped to die. Compassion is not any easy emotion to express in the context of an imminent loss. It requires that we look beyond our own pain to convey the power and meaning of all that has gone before in our life with another. Although the mother, friend, and physician may have acted out of good intentions in assisting the suicide, none appears to have honored Louise’s need for a “peaceful” parting. None seems to have been able to accept the difficult emotions involved in loving someone who is dying and knowing there is little one can do but convey love and respect for the life that has been lived. The effort to deal with the discomfort of Louise’s situation seems to drive the others to “do something” to eliminate the situation.
Watching someone die can be intolerably painful for those who care for the patient. Their wish to have it over with quickly is understandable. Their feeling can become a form of pressure on the patient and must be separated from what the patient actually wants. The patient who wants to live until the end but senses his family cannot tolerate watching him die is familiar to those who care for the terminally ill. Once those close to the patient decide to assist in the suicide, their desire to have it over with can make the pressure put on the patient many times greater. The mood of those assisting is reflected in Macbeth’s famous line, “If it were done when ‘tis done, then ‘twere well it were done quickly.”
Certainly assisted suicide — the fact that she took the lethal medication herself — offered no protection to Louise. Short of actually murdering her, it is hard to see how her doctor, Mero, her mother, her friend, and the reporter could have done more to rush her toward death. Case vignettes limited to one or two paragraphs describing the patient’s medical symptoms, and leaving out the social context in which euthanasia is being considered, obscure such complex — and often subtle — pressures on patients’ “autonomous” decisions to seek death.
Empowerment for Whom?
Our culture supports the feelings that we should not tolerate situations we cannot control. “Death,” Arnold Toynbee has said, “is un-American.” The physician who feels a sense of failure and helplessness in the face of incurable disease, or the relative who cannot bear the emotions of loss and separation, finds in assisted suicide and euthanasia an illusion of mastery over the disease and the accompanying feelings of helplessness. Determining when death will occur becomes a way of dealing with frustration.
In the selling of assisted suicide and euthanasia words like “empowerment” and “dignity” are associated only with the choice for dying. But who is being empowered? The more one knows about individual cases, the more apparent it becomes that needs other than those of the patient often prevail. “Empowerment” flows toward the relatives, the doctor who offers a speedy way out if he cannot offer a cure, or the activists who have found in death a cause that gives meaning to their lives. The patient, who may have said she wants to die in the hope of receiving emotional reassurance that all around her want her to live, may find that like Louise she has set in motion a process whose momentum she cannot control. If death with dignity is to be a fact and not a selling slogan, surely what is required is a loving parting that acknowledges the value of the life lived and affirms its continuing meaning.
Euthanasia advocates try to use the individual case to demonstrate that there are some cases of rational or justifiable assisted suicide or euthanasia. If they can demonstrate that there are some such cases, they believe that would justify legalizing euthanasia.
Their argument recalls Abraham’s approach in persuading God not to go ahead with his intention to destroy everyone in Sodom. Abraham asks if it would be right for God to destroy Sodom if there were fifty who were righteous within the city. When God agrees to spare Sodom if there were fifty who were righteous, Abraham asks what about forty-five, gradually reduces the number to ten, and gets God to spare the city for the time being for the sake of ten.
Abraham, however, is arguing in favor of saving life; we want him to succeed and are relieved that he does. Euthanasia advocates are arguing that if there are ten cases where euthanasia might be appropriate, we should legalize a practice that is likely to kill thousands inappropriately.
The appeal of assisted suicide and euthanasia is a symptom of our failure to develop a better response to death and the fear of intolerable pain or artificial prolongation of life. The United States needs a national commission to explore and develop a consensus to explore and develop a consensus on the care and treatment of the seriously or terminally ill — a scientific commission similar to the President’s Commission that in 1983 gave us guidelines about forgoing life-sustaining treatment with dying patients. Work of a wider scope needs to be done now. There is a great deal of evidence that doctors are not sufficiently trained in relieving pain and other symptoms in the terminally ill. Hospice care is in its infancy. We have not yet educated the public as to the choices they have in refusing or terminating treatment nor has the medical profession learned how best to avoid setting in motion the technology that only prolongs a painful process of dying. And we have not devoted enough time in our medical schools or hospitals to educating future physicians about coming to terms with the painful truth that there will be patients they will not be able to save but whose needs they must address.
How we deal with illness, age, and decline says a great deal about who and what we are, both as individuals and as a society. We should not buy into the view of those who are engulfed by fear of death or by suicidal despair that death is the preferred solution to the problems of illness, age, and depression. We would be encouraging the worst tendencies of depressed patients, most of whom can be helped to overcome their condition. By rushing to “normalize” euthanasia as a medical option along with accepting or refusing treatment, we are inevitably laying the groundwork for a culture that will not only turn euthanasia into a “cure” for depression but may prove to exert a coercion to die on patients when they are most vulnerable. Death ought to be hard to sell.
(1) Yale Kamisar, “Physician-Assisted Suicide: The Last Bridge to Active Voluntary Euthanasia,” in Examining Euthanasia, ed. John Keown (Cambridge University Press, in press); Yale Kamisar, “Are Laws against Assisted Suicide Unconstitutional?” Hastings Center Report 23, no. 3 (1993); 33-41; Herbert Hendin, “Seduced by Death: Doctors, Patients and the Dutch Cure,” Issues in Law and Medicine 10, no. 2 (1994); 123-68; Carlos Gomez, Regulating Death: Euthanasia and the Case of the Netherlands (New York: Free Press, 1991)
(2) “Death on Request,” Ikon Television Network, 1994.
(3) “Death on Request,” Prime Time Live, December 8, 1994.
(4) Lisa Belkin, “There’s No Simple Suicide,” New York Times Magazine, November 14, 1993.
Herbert Hendin, M.D., is professor of psychiatry at New York Medical College and the executive director of The American Suicide Foundation, New York, NY. His article originally appeared in the Hastings Center Report, vol. 25, no. 3 (May-June 1995) and is reprinted with permission ã The Hastings Center.