Choices for end-of-life care often involve deciding 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 may choose to try any treatment that might extend survival, even if such treatment causes discomfort or entails substantial costs. Instead of pursuing treatments, some people decide to 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.
Feeding tubes
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. Depending on the type of feeding tube, side effects of feeding tubes include aspiration pneumonia and sometimes pain from the tube itself. If undesired, these measures can be prohibited by advance directives or by decisions at the time when tube feeding might otherwise be used (see also Nutritional Support for People Who Are Dying).
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.
Resuscitation
The act of trying to revive a person whose heart and breathing have stopped (cardiopulmonary resuscitation [CPR]) includes measures such as chest compressions, rescue breathing, medications, and electrical shocks. CPR 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 DNR order in the patient’s medical record.
Because CPR 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 CPR. The very few who do respond survive only briefly and often without return of full consciousness.
The decision to forgo an attempt at CPR makes sense for most people expected to die soon.
Location
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 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.
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 clearly explaining their wishes. Family members are often reluctant to decline life-extending 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 CPR for people with advanced illness. In the United States, portable medical order programs are implemented at the state level and are commonly called Provider Orders for Life-Sustaining Treatment (POLST) (see www.polst.org), Such medical orders 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 professionals 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.
