Physicians need to understand what patients do or do not want when they are faced with terminal illness. Recent studies have focused on this issue from the perspective of family members, physicians, and experts in end-of-life care. Although these studies provided insight, other studies found that patients, family members, and physicians interpret the experience of dying differently. Several studies evaluated individual perspectives on death and dying. One of these studies limited the participants to patients with an estimated life expectancy of six months or less, but it focused on relatively young patients with advanced acquired immunodeficiency syndrome (AIDS). Vig and Pearlman studied the perspective of older patients with common terminal illnesses, with the goal of determining what these patients believed would be a good or bad death.
The trial was a qualitative study with one-on-one interviews of men with terminal illnesses. Participants were from various clinics associated with two university-affiliated medical centers. To qualify for the study, participants had to have a life expectancy of six months or less and have terminal cancer or heart disease. Those who met the inclusion criteria had a one-on-one semistructured interview with one of the authors. The first portion of the interview was open-ended questions about how the patients would describe good and bad deaths. This portion was recorded, transcribed, and analyzed using grounded theory methods. The second portion of the interview was closed-ended questions about specific end-of-life scenarios.
There were 26 men who participated in the study. There was heterogeneity in their responses about good deaths, bad deaths, and preferred dying experiences. Some of the more common comments about a good death included, “In my sleep, quick, painless, and without suffering.” Some of the components of a bad death included painful, prolonged suffering, and burdening others. The participants did not have uniform beliefs about the presence of others at the end or the preferred location of death. Seventy-seven percent of the participants rated family as highly important at the current time, but only 45 percent rated presence of family at the time of death as important or highly important. The main comment about this issue was that it would be nice to have family present, but the participant would not want to put them through it.
The authors conclude that when discussing end-of-life care with terminal patients, it is important to identify what patients view as a good or a bad death and what attributes contribute to a good or a bad death. This allows the discussion to concentrate on what might interfere with a good death and helps them achieve a death that is consistent with the patient’s wishes.
editor’s note: Providing care at the end of life is a challenge that requires physicians to understand what patients perceive as a good death. Vig and Pearlman found that what is considered a good or bad death is a matter of individual opinion, and health care providers need to understand what the patient considers important. Using the same research technique, Singer and colleagues1 identified five domains of quality end-of-life care. These domains included receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving the burden, and strengthening relationships with loved ones. These two studies point out that there are many aspects of end-of-life care, and physicians need to understand what patients desire at this time in their lives.—k.e.m.