Introduction Chapter 1: In Praise of Maria: a memoir

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There is a need for strict safeguards that protect the patient’s consent if physician-assisted suicide is widely accepted. The assistance that the physician provides should probably be limited to information, which might include a prescription, but not include that the physician administer the means of death.

The extremes in carrying out physician-assisted suicide are illustrated in two cases, one reported in the Journal of the American Medical Association, the other in The New England Journal of Medicine. The first article was a mere seven paragraphs long but it caused a firestorm of criticism directed at the journal’s editor and became the subject of dispute with prosecutors in Chicago. The essay entitled “It’s Over Debbie,” was published anonymously. It is so extreme that one might suspect it is fiction done for the express purpose of stirring up controversy.lxvi

The article’s brevity is inherent to its intended point. A gynecology resident is awakened in the middle of the night and directed to a unit unfamiliar to him. “Bumping sleepily against walls and corners...I grabbed the chart from the nurse’s station on my way to the patient’s room, and the nurse gave me some hurried details.” What he found was a twenty-year old girl, Debbie, who was dying with ovarian cancer. “The room seemed filled with the patient’s desperate effort to survive....It was a gallows scene, a cruel mockery of her youth and unfulfilled potential. Her only words to me were, ‘Let’s get this over with.’” The resident concluded that “the patient was tired and needed rest...I could give her rest.” He does so by injecting her with 20 cc. of morphine sulphate. Within four minutes her breathing stopped.

In this description, one detail after another violates the standards that most advocates of physician-assisted suicide would maintain. The description seemed designed to mock any standards. A half-awake resident in unfamiliar surroundings hears a young woman speak five ambiguous words. He tells a nurse to prepare a lethal injection and immediately kills the patient. It is difficult to believe that a resident would so cavalierly risk his career, not to mention arrest, even if he was totally convinced of the value of physician-assisted suicide.

The contrasting case of a patient named Diane was recounted by Dr. Timothy Quill.lxvii He had worked with the patient for three and a half years when she was diagnosed with leukemia. Although intervention with this disease had a twenty-five percent success rate, the patient had no desire to undergo chemotherapy and bone marrow transplant. “All she wanted to do was go home and be with her family. She had no further questions about treatment and in fact had decided that she wanted none.” Quill talked to her several times and at length to be certain that she understood what she was doing. “We arranged for home hospice care....left the door open for her to change her mind, and tried to anticipate how to keep her comfortable in the time she had left.”

The patient, Diane, went a step further. “When the time came, she wanted to take her life in the least painful way possible.” The physician told her where to get information and he prescribed the barbiturates in the amount necessary for suicide. Several months later she said her final goodbyes to her husband and son and asked to be left alone. After an hour they found her dead. Quill told the medical examiner she had died of acute leukemia which, he later said, was the truth but not the whole story.

Timothy Quill clearly believed that Diane’s suicide is a model case that would persuade almost anyone that a physician should sometimes offer careful and indirect help to the commission of suicide. His empathy, care and candor were widely admired as he continued to champion the cause of physician-assisted suicide. The patient, Diane, also exemplified carefulness and courage.

There are two sentences in the essay, however, that raise a concern. Quill writes that “It was extremely important to Diane to maintain control of herself and her own dignity during the time remaining to her.” As the description of her indicates, “dignity” was equated with control. Quill assumes the same meaning in saying “I was setting her free to get the most out of the time she had left, and to maintain dignity and control on her own terms until her death.” Although one should not belittle the value which is put on being in control, it is sad that “dignity” is thought to depend solely on retaining control. The vast majority of the world will never die with the rational control that is put forward in the article as the only way to die a dignified death. In many other cultures and in many homes, hospices, and communities of this culture, people are treated with dignity despite their lack of rational control.

This concern that suicide is seen as a necessary protection of “dignified dying” is at issue in the Dutch experiment. The Netherlands has been engaged for several decades in the world’s most extensive experiment of assisted suicide. The guidelines, which were given final approval in 2002, stipulate that the patient must face a future of unbearable and interminable suffering, and he or she must make a voluntary, well-considered request to die. The physician, along with the patient, must be convinced that there is no other solution, and must consult with another physician. Finally, life must be ended in a medically appropriate way.

These regulations seem reasonable and well-designed to protect the patient’s interests. However, the legalizing of suicide seems to create an atmosphere that is lax in the observance of the guidelines. For example, two government studies in 1990 and 1995 found that more than half of Dutch physicians felt that it was appropriate to suggest euthanasia to patients. Since “voluntary” may not be so clear-cut as it is often assumed to be, it is not surprising that the studies found many “non-voluntary” cases, or cases where there was no “explicit consent.”lxviii Consultation with another physician is often perfunctory. Areport in 2000 found that seven percent of assisted suicide cases had complications associated with the methods used to achieve a speedy death.lxix In many of these cases, the physician administered the lethal medication after the patient’s failed attempt at suicide.

Supporters of physician-assisted suicide say that these problems with the application of the law can and will be solved. The more important question, however, is whether Dutch (as well as U.S.) physicians are adequately trained for and properly sensitive to managing pain and relieving suffering. Suicide can become a routine way to deal with intense suffering. Some of the problems lie in the medical school’s preparation of physicians to provide palliative care. Another aspect of the problem is an overly restrictive policy on narcotic drugs for the dying. A survey of 1400 physicians and nurses in five major U.S. hospitals found that eighty-one percent of respondents agreed that “the most common form of narcotic abuse in caring for dying patients is under treatment of pain.”lxx

It is somewhat paradoxical that the demand for physician-assisted suicide has arisen just when great progress has been made in the control of pain. Although suicide is being urged in the name of patient “autonomy,” the physician and the health care system still set the options within which choice is made. The only choice offered to many people may be between inadequate care and suicide. “One might ask,” writes Carol Tauer, “whether a medical system that is the subject of so many complaints and so much wariness is a system that ought to be entrusted with additional power, the power to kill.”lxxi

Allowing to Die

What historically has been distinguished from killing – either by one’s own hand or by another’s – is a tradition of allowing death to occur. The argument now is that there is no “bright line” that separates killing and allowing to die. Before we overturn a long tradition here, the distinction deserves careful consideration. It is important to attend to the precise formulation of the distinction.

Before the advent of modern medicine the discussion of allowing to die used the language of ordinary and extraordinary means. A physician or a patient was required to use all ordinary means to sustain life. In recent times, this distinction has become unclear. The distinction implies that some things are simple and ordinary while other things are complex and extraordinary. Focusing on the things used in the treatment misses the point. The main issue is the kind of treatment that makes sense for the patient’s overall situation.lxxii

The Vatican Declaration on Euthanasia in 1980 proposed a distinction between proportionate and disproportionate means.lxxiii This recognition is significant because the Catholic Church had much to do with shaping the language of ordinary and extraordinary means. The test for treatment should be the burden laid upon the patient. If the treatment simply prolongs a person’s dying of a painful disease, there is no proportional benefit for the dying patient. Thus, an IV line to provide nutrition and hydration cannot be called either an ordinary or an extraordinary means in today’s medical practice. While a feeding tube makes eminent sense for someone recovering from surgery, the same instrument makes no sense for someone who has suffered irreversible damage to the neocortex and has no prospect for regaining consciousness.lxxiv

Pope Pius XII was prescient in addressing this question in 1958. Hardly a liberal reformer, Pius XII was simply applying a centuries-old tradition. He wrote that “it is unnatural to prevent death in instances where there is no hope of recovery. When nature is calling for death, there is no question that one can remove the life-support system.”lxxv The Pope did not merely say that disconnecting life support was allowed; he called the indefinite continuance of such instruments “unnatural.” People often refer to not using “artificial means“ for extending life. But most of medicine and much else in human life is “artifice” that protects and extends life. The artificiality of the means is not the problem; the “unnaturalness” is the problem, that is, the kind of artifice that goes directly counter to the organism preparing to die. Pius XII referred to extraordinary or heroic means but he pointed to the burden on the patient and the survivors. The whole situation, including economic concerns, has to be considered in judging whether the application of the means is proportionate.

In the United States the courts have been both the arbiters of the ethics and the judges of the law in the care of the dying. The first benchmark case for the removal of a respirator was that of Karen Ann Quinlan. On one side, Lawrence Casey, a Catholic bishop in New Jersey, testified that extraordinary means to keep her alive were unnecessary. But the court-appointed guardian argued that “one human being, by conduct or lack of conduct, is going to cause the death of another human being.” And the lawyer for the physicians said it was “like turning on the gas chamber.”lxxvi

After the court allowed the respirator to be removed from Karen Ann Quinlan, courts assumed that there is a sharp difference between a respirator and a feeding tube, although ethically there seems little difference. The operative principle in both situations is that removing the technology allows the patient to complete the process of dying. There may be a strong emotional difference if removal of a respirator leads to death in a few minutes, while death occurs after several days when a feeding tube is removed. There is also an emotional difference between not starting a life-support system and discontinuing it. But not to turn off a machine can be as much a decision as turning it on.lxxvii

People who oppose removing a feeding tube usually argue that such a procedure is starving the patient to death. That description is no more accurate than describing the removal of a respirator as smothering someone to death. One of the signs of impending death is an inability to eat; the organism is preparing to shut down. A feeding tube is not the same action as eating and the removal of a feeding tube when the patient is prepared for dying is not starvation.lxxviii Hospices generally recognize the difference and do not introduce the invasive technology of a feeding tube; that is, the patient is allowed to die. In hospitals, respirators and feeding tubes are routinely attached to the dying.

In the case of Nancy Cruzan, the parents asked for the removal of the feeding tube after she had been in a coma for three years. It took them four more years of court battles before the tube was removed; she expired twelve days later.lxxix Her tombstone reads “departed: Jan. 11, 1983; at peace: Dec. 26, 1990.”

Courts look for evidence of what the patient’s own wishes would be. These days, some people have living wills which state a person’s wishes if he or she is unable to make known those wishes. Despite all the talk about living wills, only a small minority of people actually have one. Even when people have living wills, hospitals and physicians often disregard them, sometimes because the living will is too vague.lxxx A living will that simply says “I do not wish to be kept alive artificially” is not precise enough these day.

When the patient is a child or a young person, the parents are usually in the best position to decide but often they are forced into long legal battles with the hospital, the physician, and outside advocacy groups. When the parents of Jamie Butcher, who had been in a coma for seventeen years, tried to remove the feeding tube, they were opposed by an advocacy group for disabled people, Nursing Home Action.

Concern for protecting the rights of disabled people is certainly praiseworthy but the attempt to intervene in the Butcher case made no sense. The parents had done everything possible until they finally decided that Jamie should not be in a coma for a longer time than for the seventeen years he had lived before the accident. The court-appointed referee, James Finley, ruled that the advocacy group had no standing in the case: “We have caring parents who have taken care of their son his whole life. There wasn’t any dispute that they are loving, caring, decision-makers.”lxxxi

People do occasionally recover from long comas so that precipitous action here should be avoided. But today’s technology does make it possible to determine if there is any glimmer of activity in the cerebral cortex. That determination shows whether the patient can ever regain consciousness and participate in a human community. How long one should wait before disconnecting life-support machinery cannot be made into a rule. But surely at some point – after eight years, seventeen years, x years – it makes no sense to continue keeping the body functioning.

In the case of Paul Brophy, his wife, mother, children and parish priest joined in appealing for the discontinuance of life support. “What we have here,” said the Catholic priest, “is an intervention that is not working.” Only the chief physician disagreed. His lawyer said that starving a person to death is not a death with dignity. The physician said that the patient was in good health except for being in a coma. “I am not in the business of killing people,” the physician said. When asked how long he was prepared to keep the patient alive, he referred to a case that went on for more than twenty years.lxxxii

This physician and protesters in several of these famous cases presumably believe that they are defending the right of individuals not to be killed. Unfortunately, however, their actions have the opposite effect. By equating the removal of the machinery with the act of killing, they have joined the advocates of euthanasia in their claim that there is no ethical difference between killing and letting die. That judgment can be especially cruel on parents who have had to face this decision. Stephen Carter’s opinion on the Cruzan case is both explicit and outrageous: “The thing that is precious in the human, the thing that makes life worth protecting, does not vanish because higher brain function is lost. Consequently, the starvation that occurs when feeding and hydration cease – not the underlying injury that caused the coma – is the cause of the end of that precious human substance. And it is the family, the unit to which the state has delegated the decision, that has made the choice to cease the feeding and, thus, to destroy that precious substance.”lxxxiii

In such statements, thousands of the parents of dying children, and thousands of the children of aged parents, are accused of being state-delegated executioners. In the Cruzan case and in thousands of similar cases, the family members neither wished to kill the patient nor were they the cause of death. They simply recognized that after years of their sorrow and care the disease or injury made recovery impossible. They removed the machinery that was delaying the completion of the dying process. Up to a few decades ago in the United States, the cause of death would be evident, as it still is in much of the world. The temporary intervention of machinery does not change the cause of death.

In these situations “acceptance,” the term made famous by Kübler-Ross, is helpful to recall. Acceptance is an attitude that one comes to after a long struggle of denial and resistance. Human freedom exists on two levels: a fundamental attitude of yes or no, and a range of options to choose from. Even when the options have narrowed down to a single possibility, one still has the freedom to say yes or no. When dying is imminent, life that now includes one’s death is all that is available for choice. Acceptance is a yes to dying, not the desire to kill or to end one’s own or another’s life; it is a recognition that a life has been completed.

Daniel Callahan uses the helpful analogy of a man shoveling snow from his driveway during a storm. If the snow is light, he might be able to keep up with it and keep the driveway clear. As the snow becomes heavier there will come a point when the shoveler recognizes that his efforts are futile and that the driveway will be clogged with snow no matter how hard he works. When he stops shoveling the snow it is not because he wants his driveway covered with snow but because he accepts the fact that the snow storm is in control. The cause of the driveway being covered with snow is the snow storm, not the cessation of shoveling. In this case, the storm eventually ceases and shoveling can begin again. With some diseases and injuries, the storm never ends; acceptance of death is final.

It is best when the dying patient is the one who can express this acceptance, if not verbally then by a prior written directive. The person who refuses a medical treatment does not desire to die but instead accepts the fact that resistance to dying no longer makes sense. The person’s judgment may be distorted. Physician, counselor or family member might sometimes try persuading the patient that the treatment would be worthwhile in a particular situation. In Kübler-Ross=s distinction, the patient may simply be giving up (resignation) rather than having reached acceptance.

Sometimes the decision has to be made by someone acting as a proxy for the dying patient. A family member or close friend will usually be the one who can decide what is best for the patient’s interests. However, there can be conflict of interest when, for example, the heirs to a sizeable estate are involved. Many hospitals now have an ethics committee or a committee of the person to protect the rights of the patient. The courts or the hospital administration are not in the best position to decide when acceptance of death is appropriate. No one is an infallible judge. But if someone has to decide when death is to be accepted, one hopes for a loved one on the scene, who can decide to accept that death should be allowed to happen.

Killing

In recent years it has been claimed that any line separating killing and letting die has been erased. The argument is that what had been called allowing to die amounts to the same thing as killing. The change in the meaning of “euthanasia” has facilitated the shift for advocates of assisted suicide who can now argue that the question is solely and simply about various means of achieving the same result, that is, a good death.



Central to such an argument has been the claim that “active” and “passive” are the two kinds of euthanasia so that the issue turns on whether a positive act is performed. Ronald Dworkin, commenting on a recent court decision, writes that “though the distinction between acts and omissions is often valid...that distinction does not seem important in this context.” He then concludes that “removing life-support systems already in place, which the Cruza
n case said states must allow, is as positive an act as an injection.”lxxxiv He is correct that allowing a patient to die involves positive acts, but the kind of act performed, its meaning and intention, are crucial.




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