Often, the available choices for end-of-life care 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, causes discomfort, entails substantial costs, and burdens family members. 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 who are dying often stop eating and drinking as they near death. Food and water given through tubes (artificial nutrition and hydration) do not usually make a dying person feel better (see Loss of appetite) or live significantly longer. Feeding tubes may cause discomfort and even make death occur sooner. Side effects of feeding tubes include pneumonia, swelling caused by an accumulation of fluid (edema), and pain. If undesired, these measures can be prohibited by advance directives or by decisions at the time when tube feeding might otherwise be used.
People who are debilitated or who have severely wasted away may live for several weeks with no food and minimal hydration. Family members should understand that stopping fluids does not result in the person’s immediate death and ordinarily does not hasten death when the person simply is uninterested in taking or unable to take fluids by mouth.
The act of trying to revive a person whose heart and breathing have stopped (resuscitation) includes measures such as chest compressions, rescue breathing, drugs, and electrical shocks. Resuscitation is the only treatment provided automatically in the hospital unless specifically decided otherwise in advance (called a do-not-resuscitate [DNR] order). Resuscitation efforts can be prohibited by advance care planning, whether a formal advance directive or an agreement between the patient (or a person designated by the patient to make health care decisions 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.
Often, 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 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 drugs 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.
Making choices known
People usually do best when they discuss their wishes for end-of-life care well in advance of a crisis that makes such 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 of making decisions in advance for end-of-life care is called advance care planning, and it can result in legally enforceable advance directives.
Additionally, a growing number of state and local programs address a range of emergency life-sustaining treatments in addition to cardiopulmonary resuscitation (CPR—an emergency procedure that seeks to restore heart and lung function) for people with advanced illness. These programs are most commonly called Physician Orders for Life-Sustaining Treatment or POLST. They are usually recommended because they can help emergency personnel know what to do in an urgent situation.
However, even without written documents, a conversation between the patient, family, and health care practitioners about the best course of care gives substantial guidance for care decisions later, when the patient is unable to make such decisions, and is much better than not discussing the issues at all.