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, 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.
Book Code: CA23CME
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