to construct effective strategies for care, and to communicate sensitively with patients and those close to them. This CME learning activity summarizes the major dimensions of end-of-life (EOL) care that clinicians are likely to encounter as they care for, and comfort, patients in their final phase of life. Patient preferences for EOL care Predicting what treatments patients will want at the end of life is complicated by factors such as the patient’s age, the nature of the illness, the ability of medicine to sustain life, and the emotions families endure when a loved one is sick or dying. When seriously ill patients are nearing the end of life, they and their families sometimes find it difficult to decide whether to continue medical treatment and, if so, how much treatment and for how long. In these instances, patients rely on their physicians or other trusted health professionals for guidance. In the best circumstances, the patient, the family, and the physician have discussed treatment options, including the length and invasiveness of treatment, chances of success, overall prognosis, and the patient’s quality of life during and after the treatment. Ideally, these conversations would continue as the patient’s condition changes. Frequently, however, such discussions are not held. If the patient becomes incapacitated due to illness, the patient’s family and physician must make decisions based on what they think the patient would want. While no one can predict exactly what patients will want or need when they are sick or dying, current research can help providers offer end- of-life care based on preferences (both real and hypothetical) held by the majority of patients under similar circumstances. 3 Research indicates that most patients have not participated in advance care planning, yet many are willing to discuss end-of-life care. One way to determine patients’ preferences for end-of-life care is to discuss hypothetical situations and find out their opinions on certain treatment patterns. These opinions can help clarify and predict the preferences they would be likely to have it if they should become incapacitated and unable to make their own decisions. The Patient Self-Determination Act guarantees patients the right to accept or refuse treatment and to complete advance medical directives. 4 However, despite patients’ rights to determine their future care, research reveals that: 3,5 • Only one in three American adults have created an advance directive expressing their wishes for end-of-life care. • 28% of home healthcare patients, 65% of nursing home residents, and 88% of hospice care patients have created advance directives. • Only 12 percent of patients with an advance directive received input from their physician in its development. • As many as three-quarters of physicians whose patients had an advance directive were not aware that it existed.
• Having an advance directive did not increase documentation in the medical chart regarding patient preferences. • Advance directives helped make end-of-life decisions in less than half of the cases where a directive existed. • Advance directives usually were not applicable until the patient became incapacitated and “absolutely, hopelessly ill.” • Providers and patient surrogates had difficulty knowing when to stop treatment and often waited until the patient was actively dying before the advance directive was invoked. • Language in advance directives was usually too vague and general to provide clear instruction. • Surrogates named in the advance directive often were not present to make decisions or were too emotionally distraught to offer guidance. • Physicians were only about 65 percent accurate in predicting patient preferences and tended to make errors of under-treatment, even after reviewing the patient’s advance directive. • Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development. Research also shows that care at the end of life is sometimes inconsistent with the patients’ preferences to forgo life-sustaining treatment, and that patients may receive care they do not want. For example, one study found that patient preferences to decline cardiopulmonary resuscitation (CPR) were not translated into do-not-resuscitate (DNR) orders. 6 Another study found that patients received life-sustaining treatment at the same rate regardless of their desire to limit treatment. 7 Because physicians are in the best position to know when to bring up the subject of end-of-life care, they are the ones who need to initiate and guide advance care planning discussions. Such discussions are usually reserved for people who are terminally ill or whose death is imminent, yet research indicates that people suffering from chronic illness also need advance care planning. Most people who die in the United States (80 to 85 percent) are Medicare beneficiaries age 65 and over, and most die from chronic conditions such as heart disease, cancer, chronic lower respiratory diseases, stroke, diabetes, Alzheimer’s disease, and renal failure. 8 Only about 22 percent of deaths in people age 65+ are from cancer, which generally follows an expected course, or “trajectory,” leading to death. 8 Many maintain their activities of daily living until about 2 months prior to death, after which most functional disability occurs. In contrast, people with chronic diseases such as heart disease or COPD go through periods of slowly declining health marked by sudden severe episodes of illness requiring hospitalization, from which the patient recovers.
Introduction to Palliative/End-of-Life Care In the United States, dying at home in the care of family—the norm for centuries—has been largely replaced by death in hospitals, nursing homes, and other institutions, often with highly technological care delivered by specialist health providers. Although not without benefits, this process of dying can result in isolation of the patient from their loved ones, as well as isolation from familiar and comforting surroundings. Because Americans, on average, live much longer now than they did in the past, a much larger proportion of the population dies at an advanced age. More than 70 percent of those who die each year are age 65 or over, and those who die in old age tend to die of different causes than those who die young. 1 The dying process today tends to be more extended, in part because medical treatments can manage pneumonia, infections, kidney failure, and other immediate causes of death that come in the wake of cancer or chronic disease. The field of palliative care is one response to the changing profile of death in the 21 st century. It focuses on the prevention and relief of suffering by carefully managing symptoms and by paying close attention to the emotional, spiritual, and practical needs of patients and those close to them. Other community and professional responses include the development of hospice programs, bereavement support groups, and policies and programs that encourage communication about people’s goals and preferences as they approach death. Palliative care is both a general approach to patient care (integrated with disease-modifying therapies) as well as a growing practice specialty. Primary care physicians are often expected to provide basic elements of palliative care (e.g., pain and symptom assessment and management, advance care planning), but complex cases may be best handled by palliative care specialists. Decisions about the use of life-sustaining treatment when a person is seriously ill or near death have profound consequences for that person, for his or her family and loved ones, and, often, for health care providers. Such decisions may determine the time and circumstances of the person’s death and may shape the person’s experience of remaining life—where it is lived, with whom, and with what degree of comfort or suffering. Physicians thus have a compelling responsibility to be as compassionate and competent in their care of dying patients as with patients at any other phase of their lives. Unfortunately, the education and training of physicians and other health care professionals often fail to provide them the attitudes, knowledge, and skills required to care well for the dying patient. 2 Many deficiencies in practice stem from fundamental insufficiencies in professional education. Undergraduate, graduate, and continuing education programs often do not sufficiently prepare health professionals to recognize the final phases of illnesses, to understand and manage their own emotional reactions to death and dying,
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