Where the Law Should Not Tread
PARIS — We know that dying today is not as well done as it used to be, back when the dying person was at home, a doctor gave something to ease the pain, the family was gathered at the bedside, attention was given to the condition of the dying person’s soul, to his or her last wishes, to the goodbyes. One of the Bronte sisters, in 1847, wanted to look at a favorite seaside vista one more time. So the day before her death, her sister, Charlotte, took her on the train to look at the view, and ride in a donkey cart and die in a hotel parlour at tea time, a poignant but dignified end.
Dying now is likely to be preceded by weeks or months of painful and expensive measures, often in an ICU, that, at best, will only add a little life, to the bewilderment and eventual financial ruin of survivors. Expensive and powerful medical technologies sometimes, though rarely, pay off, hence, that glimmer of hope that anxious relatives can’t say “no” when the doctor suggests one more thing to try. Doctors don’t dare refuse to do long-shot procedures, for fear of lawsuits, charges of neglect and personal reluctance to admit failure. All is complicated by technology, by our unrealistic but characteristically American optimism and, above all, by the general litigiousness of our society. The courts have intruded into the dying process, both in defense of a person’s right to die and, sometimes, by prosecuting physicians for defensible medical decisions. Prosecution is often instigated by an ambitious district attorney, or an interfering third party with a religious agenda.
Almost anyone who has recently gone through the death of a loved one following a long illness will agree that too often those left behind are angered or disappointed by hospital rules, insurance demands, a lack of communication with doctors and by their own helplessness. Everyone knows what is wrong, but we seemingly have been powerless to inject some balance and humanity into this last natural event of life.
Patients themselves can refuse heroic measures, but often aren’t in shape to do so--hence, the “living will” signed beforehand. But only 15% of people have them and, anyway, they are often ignored by medical personnel who are unaware there is such a will, or by families who override it, in hope. Pain, helplessness and financial catastrophe are the rule in this vacuum of authority. Nature, which once made the decisions, has been dismissed from the deathbed scene, but no one is willing to take its place. Thus, the proliferation of new laws both allowing and forbidding physician-assisted suicide, with a clear tendency toward the latter.
Oregon and New York now have laws allowing the right to a physician-assisted suicide. Oregon’s law goes beyond the right to refuse care to give the terminally ill the “right” to hasten death, with all suitable precautions by which society can be sure death is really your wish. In reaction, perhaps to the undeniably creepy Dr. Jack Kerkorian, voters in California and Washington both defeated similar initiatives, and Washington went on to ban assisted suicide. Now, a federal appeals court based in San Francisco has invalidated Washington’s ban, similar to California’s, clearing the way for other states to enact laws permitting assisted suicide.
At first glance, this seems humane and rational, and probably it is. But a few cautionary thoughts arise on the personal level from the point of view of physicians, and when it comes to public policy. Most of us would agree that people “ought” to be able to die peacefully, and not to be subjected to suffering when possible. The problems arise with the management of some cases, the unevenness of standards and the inequity of medical care. Some people get a more humane death than others.
The Oregon health-care system, even before its suicide law, had already incorporated some guidelines. When my mother, age 90, was discovered in a hospital to have a terminal condition, the hospital, the doctor, or someone--I never knew who made the decision--decided they would send her home, ordered a hospital bed to be delivered and notified the home-hospice personnel. Nurses and counselors appeared; someone gave me a bottle of morphine syrup to be administered by me if my mother seemed to be in pain (she was not entirely conscious to say so herself), and some medicine for any anxiety (hers, not mine). Was this a tacit permission to take matters into my own hands?
In any case, everything was discreet, tactful and considerate--an old-fashioned death at home that could have easily been a hospital nightmare, if it had not been for informed medical personnel and a rational state policy. Left to myself, I would not have known what to do, nor have had the courage or knowledge to veto further hospital measures.
What role will families play in assisted suicide? Anyone who has ever had an ambivalent thought about an elderly sick relative will immediately understand the problems here. These problems are already showing up in the Netherlands, which reports eager heirs or exhausted caregivers urging suicide, families dividing bitterly on the issue, doctors unhappy. Patients are merely at the mercy of new and different forces, more arbitrary and less inexorable. Where doctors--around 50% of them, in Oregon--doubt their ability to predict whether people have fewer than six months to live, or to recognize depression in their patients, who will judge whether or not someone is terminal and really is competent to decide?
Of course, doctors sometimes help the terminally ill person to die, and they always have (7% in Oregon have done it at least once). More often, they exercise the judgment to withdraw care (say, breathing machines or, more debatable, food and water). The distinction between refusing treatment and actively putting someone to death is a meaningful one for most physicians. In Oregon, the physician is to prescribe a lethal dose of medication to be taken by the patient himself; in the Netherlands, the lethal dose is to be administered by the physician, another moral difference, which most doctors refuse. Doctors have been trained to save, not kill people. Moreover, doctors don’t necessarily know how to administer death. There are no published data on doses or on what drugs to use.
The Oregon assisted-suicide law does not compel a doctor to participate in the law, and Oregon doctors, in fact, are less in favor of the law than the public at large--52% say they won’t participate, though most do not favor a law forbidding it, either. It is not surprising that attitudes toward assisting a suicide relates directly to religion. Many religions and traditions do not regard suicide unfavorably--some respect it. Others, notably Christian, and especially Catholics, consider it a sin. We don’t have to know the religious composition of, for instance, the U.S. 9th Circuit Court of Appeals in San Francisco, which struck down the Washington state ban on assisted suicide, to know how minority religions are influencing public policy, and the private decisions of people of other religions.
The present Oregon law has clauses to cover impasses of legal and medical disagreement and builds in a lot of fail-safe measures--a terminal diagnosis, two oral and a written application, consultation and reporting requirements. That doesn’t seem to be where the problems could lie: Does anyone not believe that in a country where HMO managers and insurance companies pressure new mothers to leave the hospital just hours after giving birth, similar pressure will not be put on the long dying? Pressure will come via families and maybe even physicians, themselves under pressure from the new profit orientation of the insurance and HMO systems, to encourage the terminally ill to take the step: “It’s futile, Mr. Smith, so you’ll save yourself pain and everyone a lot of expense.” Hospital managers will have the same point of view in this era of for-profit hospitals, and pressures will no doubt be applied to public hospitals from the agencies they are responsible to. An Oregon study of physician attitudes about the assisted-suicide law has most Oregon doctors afraid of these forces. The same is true in Michigan, and, reporters say problems in the Netherlands are already appearing.
Altogether, there are too many other questions to make one entirely comfortable about the intrusion of law into this area of private life. Are we the best judge of what we ought to do? Is there not something in the normal dying process by which the body and the spirit prepare, a preparation that cannot take place if life is shortened? Human societies have mostly thought so, though the 9th Circuit Court’s reasoning, intended to give autonomy to the person most involved on analogy with a woman’s right to choose whether or not to bear a child, seems hard to follow, in that, historically, we don’t look at death as a right or a choice but as a fate, and little in our philosophical background has prepared us to think about it otherwise.
The law was brought in because in matters of death, as in so many other matters in our society, consensus has broken down. The medical system is paralyzed by the legal system, on the one hand, driven by financial pressures, on the other, and poor levels of education compromise personal decisions. The legal system might be the place to begin to reintroduce humanity and common sense by curtailing its intrusion into the medical and metaphysical issues of dying, enlarging the roles of the hospital ethics committees already in place and expanding hospice and palliative care services, perhaps on the Oregon model.*
