Ethical Issues

Two main categories of ethical issues pertain to disability: issues concerning the value of the lives of disabled people and issues that concern the rights disabled people have and the grounds on which they claim those rights.

THE VALUE OF THE LIVES OF DISABLED PEOPLE. The ethical issues in this category are those related to the withholding of life-prolonging medical treatment, euthanasia, physician-assisted suicide, prenatal screening and abortion of fetuses with likely birth defects, and genetic engineering to prevent impairments in future offspring. Of course, these are areas of great general ethical controversy that raise many other issues.

When nondisabled people hear descriptions of a person's impairments, especially ones that result from sudden trauma to a previously unimpaired individual, they often react by thinking, "I would not want to live like that." That is sometimes the reaction of a disabled individual to his or her own losses. Robert B. White (1975) reports that at one point after his disabling accident Dax Cowart summarized his attitude by saying, "I do not want to go on as a blind and crippled person." That type of reaction helps explain why many regard the lives of people with disabilities as not worth living. However, those who have had time to adjust to their disabilities or have always lived with them are usually very glad to be alive. Although some disabilities may deprive a person's life of value, this cannot be assumed, and such an assumption, which may be unconscious, could lead to grave wrongdoing by caregivers and the legal system.

Euthanasia, withholding of life-prolonging treatment, and physician-assisted suicide. The question whether an individual should be kept alive by medical means (for example, cardiopulmonary resuscitation) or allowed to die as the result of a disease or injury and the question whether a person's death should be brought about by his or her own agency or that of others often arise when a person is terminally ill. However, they also may arise when a person has an incurable disease or another medical condition but can be expected to live for a considerable amount of time if given fairly standard medical treatments and food and water. Justifications for withholding a standard form of life-prolonging treatment from such a person or for taking steps to bring about that person's death usually appeal to the fact that as a result of the person's wretched medical condition, life is not a good to him or her. This may be the case if the person is mentally competent and requests death (usually because the medical condition causes unbearable suffering) or if the person is in a persistent vegetative state and is unable to have experiences of any kind or is an infant too young to make decisions who faces a very bleak future.

The appeal to autonomy. The refusal of life-prolonging treatment by a mentally competent patient is justified by an appeal to individual autonomy. A patient has a moral right to refuse treatment; this is an aspect of the fundamental moral right to autonomy, including decision-making control over what happens to one's body. Some people doubt whether it is ever morally permissible for a person to exercise the right to refuse treatment for the sole purpose of hastening his or her own death. However, there is wide agreement that if a patient does refuse treatment for any reason, provided that that person is mentally competent and well informed about her or his condition and prospects, it is wrong for anyone else to force the treatment on that person against her or his will. To do so would be an act of assault.

It is far more controversial whether the right to autonomy includes the right to commit suicide (rather than only to refuse treatment), and whether once a competent patient has decided to end his or her life a physician or another person may rightly assist him or her in doing that or may deliberately end that person's life at his or her request. Some defend the legitimacy of suicide as a rational and autonomous act, at least in the face of great and irremediable suffering that deprives life of its value. Others object to it even in such cases on the grounds that suicide is incompatible with respect for life. Physicians sometimes are asked to provide help in dying, for example, by giving lethal doses of drugs. Some argue that in cases in which the patient's life is not a good to the patient assistance with suicide is legitimate and indeed is a compassionate act. Others condemn this practice either because they condemn all suicide and judge it wrong to assist in a wrongful act or because they deem assisting with suicide incompatible with the role of a physician. Finally, some regard active euthanasia as incompatible with respect for life, indeed as murder, even when the killing is requested by the person who is to be killed. Others argue that euthanasia is morally justified when it is fully voluntary and the person's life is not worth living.

The incurable conditions that sometimes cause people to refuse life-prolonging treatment or seek physician-assisted suicide (PAS) or euthanasia (or because of which treatment is refused or euthanasia is sought on people's behalf) are often impairments and/or disabilities or are, like pain and nausea, the causes of impairments and/or disabilities. Among them are such conditions as the extensive brain damage suffered by Nancy Cruzan and diseases (and impairments) such as bone cancer, which causes disability by producing such overwhelming pain that the person cannot engage in normal activities. Thinking of a person who wishes to die as being disabled, as nearly always is the case, may change one's thinking about the ethical issues involved.

For those who oppose all euthanasia and PAS no moral conundrum arises with respect to disabilities in these areas: All such acts are wrong. For proponents of euthanasia and PAS, however, disabilities introduce some special dilemmas.

Many advocates of euthanasia and PAS tend to think of the matter as follows: Disabling conditions such as cerebral palsy, paralysis, and the type of permanent respiratory insufficiency that requires daily use of a respirator are incurable and can deprive life of its value for the afflicted person. If that person is mentally competent and refuses a life-prolonging treatment, saying that he or she prefers to die, these conditions are sufficient reason for that person to do so, and of course the request should be honored because it represents an exercise of individual autonomy. Even the opponents of euthanasia and PAS agree that treatment should not be forced on a person who is competent. If a person requests PAS or euthanasia, these are also sufficient reasons for it to be administered by willing parties according to this view. People with disabilities who seek death by starvation or the removal of a respirator have been hailed as champions of individual autonomy who attempt to exercise their rights against the resistance of officious healthcare institutions.

TWO ARGUMENTS AGAINST THE AUTONOMY-BASED APPROACH. There are two important counterarguments to this way of looking at requests to die made by people with disabilities.

The first is Carol Gill's (1992) suicide-prevention argument. Gill notes that when a nondisabled person undergoes a life crisis and subsequently shows certain behavioral signs and expresses a wish to die, that person is diagnosed with depression and is given counseling. He or she is regarded as less than fully competent because of depression and suicidal ideation. Gill observes a widespread assumption among nondisabled people, including healthcare professionals, that life with a disability is not worth living. Because of this, she argues, when someone with a disability expresses a suicidal wish, it is not classified as a symptom of curable, temporary emotional pathology. Instead, healthcare professionals regard the wish to die as rational because of their revulsion at the thought of living with a disability. They overlook standard clinical signs of depression and may disregard the presence of life crises or disappointments that are not related to the disability, such as loss of employment and divorce. Consequently, instead of providing suicide-prevention services, they encourage withdrawal of life-prolonging treatment, euthanasia, or PAS. If suicide-prevention services were provided, the disabled person might see adequate reason to live regardless of the disability, for once the depression was treated, the person would find life worthwhile. Thus, to advocate a right to die for the disabled is, at least in some cases, not to promote individual autonomy in decisions about life and death but instead to deprive the disabled of the suicide-prevention services routinely offered to nondisabled persons, a form of invidious discrimination.

The second, and related, counterargument arises more directly from the minority group model of disability. There is evidence that in some cases disabled persons seek death not because they find their impairments unendurable but because they are trapped in a dehumanizing social setting. Larry McAfee, for example, became so frustrated with his confinement to a nursing facility that he obtained a legal ruling that his ventilator be disconnected. Disabilities activists helped McAfee obtain job training and arrange to live outside the nursing home; he then decided to continue to live. According to this argument, what makes life unbearable to such people is not their impairments but the social world that subjects them to physical confinement and denies them decision-making power over their lives. Many people who are fairly severely disabled can, with assistance, do what McAfee did. However, government aid programs often refuse to provide the needed services outside an institution or the person is stymied by an unresponsive bureaucracy or excluded from jobs or housing by physical barriers or human prejudices. Thus, the disabled person's misery is caused by the choices and policies of other people. The person may seek death as the only alternative to living without basic dignity. In this view the ethical solution is not to allow or assist in the person's death but to free the members of this minority group from the oppressive conditions under which they are forced to live by implementing policies that promote independent living.

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