THE MERCK MANUAL HOME HEALTH HANDBOOK
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Treatment Options at the End of Life

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Quantity Versus Quality: Often, the available choices involve a decision whether to accept the likelihood of dying sooner but to be more comfortable or attempt to live slightly longer by receiving aggressive therapy that may increase discomfort and dependence. For example, a person dying of severe lung disease may live longer if placed on a mechanical ventilator (a machine that helps people breathe). However, most people find being on a ventilator very unpleasant and often require heavy sedation.

Some dying people and their families feel that they must try any treatment that might prolong survival, even when hope for gaining more than a little time is unrealistic. Such treatment often sacrifices the person's last few days to side effects without gaining quality time. In many cases, as a person nears death, the focus of care should shift entirely to providing comfort measures to ensure that the dying person does not suffer and has every opportunity to experience the closure that honors the life lived. Personal philosophy, values, and religious beliefs become more important when such decisions are made by and for a dying person.

People usually do best when they discuss their wishes for end-of-life care well in advance of a crisis that makes their decisions urgent. Such early discussions are very important because, later on, illness often prevents people from explaining their wishes. Family members are often reluctant to decline life-prolonging treatment without clear prior direction from the ill person. This process is called advance care planning, and it can result in legally enforceable advance directives (see Legal and Ethical Issues: Overview of Legal and Ethical Issues in Health Care). Advance directives should be in writing and comply with legal requirements whenever possible. However, even a conversation among the patient, family, and health care practitioners about the best course of care creates an advance care plan that is usually sufficient to guide care decisions later, when the patient is unable to make such decisions.

Feeding Tubes: Food and water given through tubes (artificial nutrition and hydration) do not usually make a dying person feel better (see Death and Dying: Loss of Appetite) or live significantly longer, though some people do benefit. If undesired, these measures can be prohibited by advance directives or by decisions at the time when tube feeding might otherwise be used.

Resuscitation: The act of trying to revive a person who has died (resuscitation) includes measures such as chest compressions, rescue breathing, drugs, and electrical shocks applied to someone whose heart has stopped beating. It is the only treatment provided automatically in the hospital unless specifically decided otherwise in advance (called a do-not-resuscitate [DNR] order—see Legal and Ethical Issues: Do-Not-Resuscitate (DNR) Orders). Resuscitation efforts can be prohibited by advance care planning, whether a formal advance directive (see Legal and Ethical Issues: Advance Directives) or an agreement between the patient (or proxy if the patient is unable to make decisions) and the doctor. Once decided, the doctor writes the needed order in the patient's medical record.

Because resuscitation at best returns people to the state they were in before their heart stopped, it is not beneficial for people who are coming close to death, for whom the stopping of their heart is simply the final event. Such people are overwhelmingly unlikely to respond to resuscitation. The very few who do respond survive only briefly and often without return of full consciousness.

The decision to forgo resuscitation makes sense for most people expected to die soon, and such a decision need not weigh heavily on the family.

Location: Sometimes dying people and their family members may prefer to have the final days at home—a familiar, supportive setting—and not in a hospital. For people who are at home, this usually requires a reminder to all caregivers not to call an ambulance when symptoms indicate the approach of death (see Death and Dying: When Death Is Near). For people who are in the hospital, staff can help families arrange for the person to go home with all necessary treatments for comfort, such as medications and a hospital bed. If hospitalization is preferred, or is unavoidable, it is especially important to have the person's decisions regarding undesired interventions documented.

Services to Know About
  • Home care is medically supervised care in a person's home by professional caregivers, who may help give drugs, assess the person's condition, and provide baths and other personal services.
  • Hospice care is care at the end of life that emphasizes relief of symptoms and provides emotional, spiritual, and social support for a dying person and family members. The setting may be the person's home, a hospice facility, or another institution, such as a nursing home. Hospice-type care is provided in some hospitals. To obtain hospice care, a person usually has to be expected to live less than 6 months.
  • Nursing home care is residential care in a licensed facility with nurses and support workers.
  • Respite care is temporary care at home, in a nursing home, or in a hospice facility that enables family members or other caregivers to travel, rest, or attend to other matters. It may last days or weeks, depending on the care delivery system and funding.
  • Voluntary organizations provide a variety of financial and support services to people who are ill and their families. Such organizations usually focus on people who have a certain disease.

Last full review/revision October 2007 by Joanne Lynn, MD, MA, MS

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