A report released by the Institute of Medicine's Committee on Care at the End of Life states that individuals often suffer needlessly at the end of life. According to this report, the organization of the health care delivery system in the United States impedes delivery of good end-of-life care, and, in addition, physicians and nurses lack the basic training necessary to provide good end-of-life care. Findings such as this have fueled a variety of efforts to improve care at the end of life. One important step in this effort is to increase public and consumer understanding of palliative care.
The World Health Organization (WHO) defines palliative care as the "combination of active and compassionate therapies to comfort and support individuals and families living with a life-threatening illness. During periods of illness and bereavement, palliative care strives to meet physical, psychological, social, and spiritual needs, while remaining sensitive to personal, cultural, and religious values, beliefs, and practices" (World Health Organization). Ideally, palliative care should begin when one is diagnosed with a life-limiting illness for which there is no known cure, such as congestive heart failure, chronic lung disease, and many forms of cancer. Palliative care may initially be combined with medically aggressive therapies to promote comfort, or it may be the sole focus of care as an individual approaches death. According to the WHO, the philosophy of palliative care encompasses the following tenets:
- Individuals and families have the right to participate in informed decisions and make treatment choices
- Palliative care affirms life and regards dying as a normal process
- Palliative care does not hasten or postpone death
- Care focuses on the total person, including physical, psychological, and spiritual aspects
- Palliative care provides support to the family and other loved ones during a patient's illness
- Palliative care interventions aid the patient in living each day to its fullest possible potential, within an illness context
Most people, including both consumers and health care providers, assume that palliative care is for individuals who are terminally ill. The decision to refocus care from active disease treatment with hopes of a cure to treatment that focuses on comfort and preparation for death occurs when attempts at a cure are no longer beneficial. Unfortunately, the boundaries between disease cure and disease comfort are often blurred and indistinguishable.
Before 1900, individuals often died of infectious and/or very short-term disease processes. Death was expected, familiar, and viewed as a natural process. With improvements in public health (particularly in nutrition and sanitation); the development of antibiotics; the movement of the sick from homes to institutions; and the continuous advancement of life-saving technologies, the nature of illness and dying changed. Most deaths now occur in older adults who have lived with one or more progressive, long-term, debilitating illnesses for months or years. The central difference between dying in 1900 and dying today is the trajectory towards death. In 1900, dying was quick and recognizable, whereas today it is difficult to recognize, and the timing of death is almost impossible to predict. The prolonged nature of illness and dying requires a broader conceptualization of palliative care that combines active disease treatment with aggressive symptom management, emotional and spiritual support, ongoing communication, and preparation for death. This approach acknowledges that dying is an extended process and that death may be months or years away.
The essential components of palliative care include a multidisciplinary team, aggressive symptom management, patient and family support, advance planning of care, and death preparation. The focus is on the whole person and on the person's loved ones. A multidisciplinary team of health care providers, including physicians, nurses, social workers, and clergy, is used to attend to the physical, emotional, and spiritual needs of the person. Hospice is one avenue by which a patient can receive palliative care services. Unfortunately, hospice services only reach about 17 percent of individuals who die each year. Federal guidelines define eligibility for hospice admission as including only persons who have six months or less to live. In light of the difficulty in recognizing when someone is dying, and in predicting the timing of death, this guideline limits the number of people who have access to hospice services. In general, barriers to palliative services also include a lack of education about health care providers, a lack of consumer awareness of palliative care, and a lack of acceptance of death in society at large.
Although there are inadequacies in end-of-life care, advances in palliative care are being made. These advances include the development of educational programs to train specialists in palliative care, the addition of palliative education into medical and nursing schools, and the development of palliative care teams in hospitals. In addition, scientific evidence supports the alleviation of chronic physical pain with common analgesics and adjunct therapies. This is important because 20 to 30 percent of individuals will need to be referred to a palliative care specialist for adequate pain relief. Scientific evidence has also shed light on the role of nutrition and hydration in advancing illness. For many individuals who are approaching death, the use of feeding tubes does not prolong life, nor does it decrease the incidence of aspiration pneumonia. Loss of appetite and weight can be a normal part of the dying process, and, in any case, it is more often a dry and sore mouth, not dehydration, that causes discomfort. Palliative care specialists are especially skilled at helping family members differentiate between abnormal but treatable and normal declines in appetite, and at helping family members relieve common physical discomforts.
Communication between a patient and care provider regarding treatment goals is especially important. There is a need to frame discussions around the burdens and benefits of treatment options within the patient's interpretation of his or her own quality of life.
Palliative care is for all persons who live with a life-limiting illness. As older adults live longer with chronic, debilitating illnesses, the delivery of palliative care from a multidisciplinary team is imperative to maximize the quality of life of these patients on a daily basis.
See also Cancer; Competency; Death and Dying; Euthanasia and Senicide; Hospice.
Billings, J. A. "What is Palliative Care?" Journal of Palliative Medicine 1 (1998): 73–81.
Institute of Medicine, Committee on Care at the End of Life. Approaching Death: Improving Care at the End of Life. Edited by M. J. Field and C. K. Cassel. Washington, D.C.: National Academy Press, 1997.