Living Will


A living will is a written document that declares what life-sustaining medical interventions a person wants if she becomes terminally ill with little or no hope of recovery and is unable to communicate her wishes. It was created in response to the increasing ability of medical technology to prolong dying, frequently in a painful and undignified way. Often at the time life supports are needed patients are unable to communicate their wishes. A patient's autonomy and right to privacy may be violated in such circumstances when it is medical personnel or others, and not the patient, who make crucial decisions regarding life supports. Living wills are designed to permit patients to "speak" when they are unable to by providing directions in advance. It is also a way of giving meaning to the doctrine of informed consent, which requires physicians to obtain the consent of their patients before beginning any medical treatment.

The first living will was conceived in 1967 by Luis Kutner, a human-rights lawyer in Chicago and cofounder of Amnesty International, in conjunction with the Euthanasia Society of America (now called Partnership for Caring). The living wills were distributed by the Euthanasia Society, and in addition to their practical use, they served as a way of promoting education and dialogue about endof-life issues.

The use of living wills was further popularized by the Karen Ann Quinlan case in 1976. Quinlan was twenty-one years old when she was placed on a respirator after she stopped breathing for unexplained reasons and entered a chronic persistent vegetative state. Her parents were forced to turn to a court to have her respirator removed so she could die naturally, thus bringing attention to the fact that few if any mechanisms existed for making these crucial decisions. The case acted as a catalyst for state legislatures throughout the 1970s and mid-1980s to pass living will laws.

Living wills are narrowly tailored documents that generally apply only when a person has a terminal illness, although some states allow living wills to be used when a person is in an "irreversible coma" or "persistent vegetative state." Living wills do not apply to all types of medical treatment but are limited to life-sustaining treatment or to maintenance medical care. State living will laws differ in their definitions of what constitutes life-sustaining treatment. Generally it includes artificial technology that postpones death, but not care that eases pain. In over half of the states in the United States nutrition and hydration are not considered life-sustaining treatment (although these types of provisions may conflict with court decisions that have held otherwise). In some states, persons must specifically state in their living will whether or not they want nutrition and hydration withdrawn.

Under most state laws, living wills never expire, although some states require them to be renewed periodically. Living wills can be revoked or changed at any time. Living wills must be signed by witnesses, usually two, who cannot be family members or health care workers. Some states provide mandatory living will forms; other states are more flexible. It is not clear that a living will executed in one state will be effective in another state. Only a handful of states have laws that expressly provide that another state's living will be accepted, although this does not mean that a state without such a law will not honor a living will executed in another state.

Even a properly executed living will poses obstacles to compliance. Many living wills consist of a one- to two-page form that contains standardized and broad language that is too vague to provide enough guidance to physicians. For example, one state's statutory living will form provides, in part, that if the person has "an incurable and irreversible injury, disease, or illness judged to be a terminal condition by my attending physician . . . such procedures that will only prolong the dying process [are to] be withheld or withdrawn." Such language leaves open to interpretation what is meant by a terminal condition. For some it means imminent death and for others it means an irreversible condition that will ultimately result in death. It also provides only vague guidance as to what procedures shall not be used. A feeding tube may be considered a comfort measure to some and a life support to others.

Even those forms that permit people to insert their own language often suffer from similar deficiencies, with people often using the same broad language to record their wishes. On the other hand, using more specific language can also have its pitfalls. It may make the living will difficult to apply if it does not fit the situation exactly. And even if the directions are clearly understood, when treatment should be stopped may also not be clearly spelled out in the living will. Finally, for many people, it is difficult to predict in advance what one would want in the event of a life-threatening or terminal illness. Not all possible scenarios can be anticipated.

For these and other reasons, many health care providers and advocacy groups suggest that living wills may provide a false sense of security. Physicians may not comply with them for a variety of reasons, including that they are often not available when needed (many people keep their only copy locked away in a security box) or because they do not provide specific enough instructions. To overcome these deficiencies, advocacy groups and legal organizations suggest that in addition to a living will, a person should execute a health care proxy, which appoints a person to make medical decisions when the patient can no longer do so. Several states are now combining health care proxies and living wills into one document. This permits a person who knows the patient, including his values, lifestyle, and religious beliefs, to provide guidance in making a decision that will best reflect the patient's wishes. It is also suggested that people complete a values history to aid the health care proxy in making decisions. A values history includes a description of the person's overall attitude toward life and health, dependency, his personal relationships, religious background and beliefs, finances, and other issues that may affect what type of medical intervention he wants at the end of life.

Living wills have served as an important educational tool in educating the public about end-of-life issues. They have been criticized as ineffective, however, because they are often too vague to provide guidance. Increasingly, other forms of advance directives that more clearly set out a patient's preferences and designate a person to make decisions when the patient cannot are being recommended.

See also: Advance Directives ; Cruzan, Nancy ; End of-Life Issues ; Euthanasia ; Informed Consent ; Life Support System ; Natural Death Acts ; Persistent Vegetative State ; Quinlan, Karen Ann

Bibliography

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Emanuel, Linda L., Michael J. Barry, John D. Stoeckle, Lucy M. Ettelson, and Ezekiel J. Emanuel. "Advance Directives for Medical Care: A Case for Greater Use." New England Journal of Medicine 324 (1991):889–895.

Furrow, Barry R., Thomas L. Greaney, Sandra H. Johnson, Timothy Stoltzfus Jost, and Robert L. Schwartz. Health Law. St. Paul, MN: West Publishing, 1995.

Koch, Tom. "Life Quality vs. the Quality of Life: Assumptions Underlying Prospective Quality of Life Instruments in Health Care Planning." Social Sciences and Medicine 51 (2000):419–427.

LoBuono, Charlotte. "A Detailed Examination of Advance Directives." Patient Care 34, no. 21 (2000):92–108.

Rich, Ben A. "Advance Directives: The Next Generation." Journal of Legal Medicine 19 (1998):1–31.

Teno, Joan, et al. "Advance Directives for Seriously Ill

Hospitalized Patients: Effectiveness with the Patient Self-Determination Act and the Support Intervention." Journal of the American Geriatrics Society 45 (1995):500–507.

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