Glossary

Advance care directives (or simply advance directives) are written documents meant to make explicit the conditions under which individuals expect to wish to receive certain treatment or to refuse or discontinue life-sustaining treatment, in the event that they are no longer legally competent to make their own decisions.

A durable power of attorney (sometimes referred to as a health-care proxy) is a form of advance directive that designates an individual who can make decisions if the dying person is no longer competent to do so.

A living will is a form of advance directive that specifies in writing what kinds of treatment are and are not wanted.

Aggressive pain management is an essential component of palliative care intended to provide relief from physical suffering at the end of life.

The double effect is a term given to the practice of providing large doses of medication to relieve pain even if the unintended effect of such medication may be to hasten death.

Terminal sedation is the term given to the practice of administering sufficient pain medication to render a dying person who is suffering severe, intractable pain unconscious (i.e. to induce an artificial coma). Generally, artificial nutrition and hydration are also withheld or withdrawn, and the state of unconsciousness is maintained until death occurs.

Assisted suicide refers to the situation in which persons request the help of others, in the form of access to information or means, the means, and/or actual assistance, in order to end their own lives.

Physician-assisted suicide refers to cases in which a physician deliberately and knowingly helps an individual to die (American Association of Suicidology, 1996).

Euthanasia generally refers to situations whereby someone intentionally takes a person's life with stated intent to alleviate or prevent perceived suffering (American Association of Suicidology, 1996).

Active euthanasia is the practice of shortening an individual's life by taking a lethal action such as administering a lethal dose of medication with the intent to hasten death. It is illegal in the United States.

Passive euthanasia is an older name given to withholding or withdrawing life-sustaining treatment that could otherwise prolong life. The term is no longer in wide use in the United States.

Voluntary euthanasia occurs when a competent dying individual has given voluntary, informed consent to actions that will result in death.

Nonvoluntary euthanasia occurs when a person, who is not currently capable of giving consent to actions that will result in death, receives such actions. It applies to situations when death by euthanasia is believed to be consistent with the person's prior wishes.

Involuntary euthanasia occurs in situations in which the euthanasia is carried out without consent or against the will of the recipient. Active euthanasia of all kinds is illegal in the United States, and all involuntary euthanasia, whether passive or active, could lead to charges of homicide.

Hastened death is an inconsistently defined term meaning to end one's life earlier than would have happened without intervention. Some use it to refer to assisted suicide and euthanasia only. Others, however, include in this category withholding and withdrawing treatment, death caused by aggressive pain management, and voluntary cessation of eating and drinking.

Hospice refers to programs that focus on quality of life for dying persons. The first modern hospice, St. Christopher's Hospice in London, was founded by Dr. Cicely Saunders in 1967. The defining components of the hospice approach are as follows (Lattanzi-Licht & Connor, 1995, p. 145):

• The patients and family are the unit of care.
• A comprehensive, holistic approach is taken to meet the patient's physical, emotional, social, and spiritual needs, including major attention to effective symptom control and pain management.
• Care is provided by an interdisciplinary team, which includes medical supervision and use of volunteers.
• The patient is kept at home or in an inpatient setting with a homelike environment where there is coordination and continuity of care.
• In addition to regularly scheduled home care visits, services are available on a 24-hour, 7 day-a-week, on-call basis.
• The focus of care is on improving the quality of remaining life; that is, on palliative, not curative, measures.
• Bereavement follow-up services are offered to family members in the year after the death of their loved one.

Palliative care refers to the type of care an individual may receive at the end of life after it becomes obvious that no cure is possible. The World Health Organization (1990) stated that good palliative care:

• Affirms life and views dying as a normal process;
• Neither hastens nor postpones death;
• Provides relief from pain and other distressing symptoms;
• Integrates the psychological and spiritual aspects of patient care;
• Offers a support system to help patients live as actively as possible until death;Offers a support system to help family members cope during a patient's illness and during their own bereavement.

The Patient Self-Determination Act (Omnibus Budget Reconciliation Act, 1990) is a bill passed by Congress that requires all hospitals, HMO's, hospice, and extended care nursing homes participating in Medicare or Medicaid to ask all adult inpatients if they have advance directives, to document their answers, and to provide information on related state laws and hospital policies.

Withholding or withdrawing life-sustaining treatment is an ethically and legally accepted practice that may be specified in advance care directives. It permits patients to forego or terminate life-sustaining equipment such as ventilators, dialysis machines, feeding tubes for artificial nutrition and intravenous fluids for hydration, and the sophisticated technology of the intensive care unit. In addition, it allows for aggressive treatments to be foregone or terminated (e.g. chemotherapy or radiation therapy except for comfort care, antibiotics, certain anti-seizure medications, or anti-inflammatory agents that control brain swelling).

The Do Not Resuscitate request is a form of withholding life-sustaining treatment that requires that no attempt be made to revive a person who has died.

Voluntary cessation of eating and drinking, sometimes referred to as voluntary stopping of eating and drinking, is a form of withholding or withdrawing life-sustaining treatment. Some individuals near the end of life who wish to die several days to a few weeks sooner than would happen naturally may choose it. During this time palliative care may be provided to keep the person comfortable during the time it takes for death to occur from the underlying disease (Miller & Meier, 1998).

Introduction
Section 1 | Section 2 | Section 3 | Section 4
References
Appendix A | Appendix B | Appendix C
Appendix D | Appendix E | Appendix F
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