Am Fam Physician. 2000 Feb 1;61(3):636-642.
I will not endure chemotherapy. I will not go through that indignity. If this is the way I am to end my life, that's fine. I don't want to retch and writhe in nausea. I don't want to lose my hair and dignity. I am ready to go if that is what is demanded of me.
—Doris Pareson, 1922–1999
Regardless of the wisdom of the choices Doris made as she faced the diagnosis of metastatic breast cancer, one thing is clear: she was adamant that she would retain her dignity and control of her life. She did not waver from this stand. Several months later, Doris died quietly and free of pain in her own bed, attended by her sister and her niece. The death of this patient is a demonstration of recent advances in end-of-life care.
The World Health Organization has defined end-of-life care, typically referred to as hospice care or palliative care, as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychologic, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families.”1
Terminally ill patients in the United States are increasingly choosing hospices for their end-of-life care. In 1998, 3,100 hospice programs served approximately 540,000 dying patients in this country.2
By virtue of their lifelong relationship with patients, most family physicians practice some form of end-of-life care. It is a fact that many of our patients will die while under our care. Consequently, the sole goal of saving life is unrealistic. When confronted with a patient who is approaching the end of life, we need to change our treatment goal from saving life to ensuring that the patient has the best quality of life for as long as possible. This is the essence of palliative care. By virtue of our training and practice ideals, family physicians are in a unique position to champion this philosophy of terminal care.
Because family physicians provide care throughout life, they become family friends. Thus, they are skilled advocates for patients and their families in all aspects of health care. There have been some studies suggesting that longitudinal care may have some benefit over tertiary care.
A 1995 survey of end-of-life care in five tertiary care centers, conducted as part of the Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment (SUPPORT),3 found that 38 percent of dying patients spent more than 10 days in the intensive care unit and that only 47 percent of the treating physicians knew that their patients preferred to avoid resuscitation.
A similar but smaller study4 of terminally ill patients treated by primary care internists found that these physicians had cared for the patients for an average of over one year and had been the primary medical care providers for the majority of them. In this community care–based model, 78 percent of the patients' families recalled discussing end-of-life preferences with their physician. Furthermore, only 5.5 percent of the patients received ventilatory support and only 2.4 percent received cardiopulmonary resuscitation. The findings of these studies suggest that variations exist in different health care settings regarding degree of technologic intervention at the end of life.
The challenges are to determine the extent to which the primary care physician helped improve end-of-life care and whether the longitudinal relationship with a family physician could improve patients' understanding of and access to palliative care, regardless of the type of facility.
From the inception of their specialty, family physicians have appreciated the role of the health care team. Nowhere is this more important than in the provision of hospice care. The multidisciplinary team that is the core of hospice end-of-life care integrates the disciplines of nursing, social work, counseling, ministry and medicine. Many family physicians have demonstrated their commitment to this concept of care by serving as hospice medical directors.
Several areas of end-of-life care remain of concern in the United States. The most significant of these is the generally accepted definition of terminal illness as one in which a patient has six months or less to live. In particular, this is the definition accepted by Medicare. However, predicting the end of life is extremely difficult, and several studies have demonstrated little predictive value for existing systems of evaluating the possible duration of life.5,6
The six-month criterion also eliminates from hospice care many patients who have terminal diseases but a life expectancy of greater than six months, such as patients with chronic obstructive pulmonary disease or Alzheimer's disease. Uncertainty surrounding the six-month criterion is also a significant barrier to physician referrals of terminally ill patients to hospice care.7 Because life expectancy for many terminal diseases may be longer than six months and determining exactly when life will end is so difficult, many hospice programs are working to develop palliative care services or units to serve patients with these particular needs.
Untreated pain is another significant end-of-life issue that was addressed in the SUPPORT survey.3 In this survey, 50 percent of families reported that their dying family members were in moderate to severe pain at least one half of the time. At the end of life, pain can exact a terrible toll through its direct effect on the patient and the fear it instills in both the patient and the family members. To address the problem of untreated pain, many states have developed cancer pain initiatives to improve the awareness and science of pain management. The prototype program has been the Wisconsin Cancer Pain Initiative, which has an excellent Web site8 that outlines provided services and gives links to programs in other states.
Nonetheless, there is still a crucial need for family physicians to be aware of untreated pain and to be proactive in alleviating it. In “Managing Pain in the Dying Patient,”9 the first article in American Family Physician's “End-of-Life Care” series, Whitecar and colleagues indicate that “following recommended guidelines on the use of analgesics (including narcotics), family physicians can achieve successful pain relief in nearly 90 percent of dying patients.”9
Providing a patient with quality care to the end of life requires a knowledge of new information and techniques for symptom control. Virtually all end-of-life interventions use agents and techniques with which family physicians are familiar, although the dosages and delivery systems are sometimes different. That these skills are obtainable by primary care physicians is shown by a recent study in community-dwelling hospice patients.10 In this study, their levels of pain control were not significantly different from those obtained by oncologists. More importantly, family physicians must be willing to use the new technology.
The articles in the AFP series illustrate much of the science and art of end-of-life care. In addition, the American Academy of Palliative and Hospice Medicine has published an excellent self-study primer on palliative care.11 Several textbooks on the subject are also available. Other powerful and willing resources are the nurses and physicians of local hospice programs.
Good end-of-life care is not assisted suicide. Rather, it is the relentless pursuit of symptoms that compromise quality of life to the moment of death. Hence, end-of-life care is actually a life-giving form of care. I urge all family physicians to become familiar with the science and art of end-of-life care and to use this care aggressively to help patients and their families have the best life possible to the very end.
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1. Cancer pain relief and palliative care. Report of a WHO Expert Committee. World Health Organ Tech Rep Ser. 1990;804:1–75....
2. Hospice fact sheet. Retrieved November 10, 1999, from the World Wide Web: http://www.nho.org./facts.htm.
3. A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). The SUPPORT Principal Investigators. JAMA. 1995;274:1591–8.
4. Hanson LC, Earp JA, Garrett J, Menon M, Danis M. Community physicians who provide terminal care. Arch Intern Med. 1999;159:1133–8.
5. Fox E, Landrum-McNiff K, Zhong Z, Dawson NV, Wu AW, Lynn J. Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. Support Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. JAMA. 1999;282:1638–45.
6. Vigano V, Dorgan M, Bruera E, Suarez-Almazor ME. The relative accuracy of the clinical estimation of the duration of life for patients with end of life cancer. Cancer. 1999;86:170–6.
7. Weggel JM. Barriers to the physician decision to offer hospice as an option for terminal care. WMJ. 1999;98:49–53.
8. Wisconsin Cancer Pain Initiative Web site. Retrieved December 7, 1999, from the World Wide Web: http://www.wisc.edu/wcpi/.
9. Whitecar PS, Jonas AP, Clasesn ME. Managing pain in the dying patient. Am Fam Physician. 2000;61:755–64.
10. Nowels D, Lee J. Cancer pain management in home hospice settings: a comparison of primary care and oncologic physicians. J Palliative Care. 1999;15:35–9.
11. Story P, Knight CF. Hospice/palliative care training for physicians. Gainesville, Fla.: American Academy of Hospice and Palliative Medicine, 1997.
Copyright © 2000 by the American Academy of Family Physicians.
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