Advocacy

Treatment of Pain at the End of Life

A Position Statement from the American Pain Society

1. We recognize that the current debate over physician-assisted suicide and euthanasia reflects a broad public concern that terminal illness is often accompanied by severe pain and other symptoms that make death seem preferable.

2. Pain and other symptoms at the end of life can usually be relieved if clinicians have the training and resources to focus on this goal, but current treatment often falls short. Well-trained clinicians can provide adequate pain relief for more than 90% of dying cancer patients. Patients can be reassured that in the occasional case where the best treatments cannot allow the patient to be alert and relatively comfortable, intravenous sedatives can relieve all symptoms in the last days of life. However, a substantial proportion of patients, particularly those in minority groups, receive inadequate analgesic treatment (Cleeland et al., 1994). Suicidal wishes in patients with advanced disease are closely linked to unrelieved pain and to mood alterations such as depression and anxiety, which like pain, frequently respond to clinician treatment if the clinician identifies and addresses them (Foley, 1995).

3. Despite the best intentions of clinicians, pain and symptom control is often suboptimal because the entire healthcare system has been designed around cure of disease rather than palliation (Max, 1990). There have been many demonstrations of major improvements in pain treatment within a healthcare organization, but programs that do this must redesign many aspects of the way care is delivered (Jacox et al., 1994; American Pain Society Quality of Care Committee, 1995). Essential ingredients in such programs include the following:

  • Physicians, nurses, patients, and families must be educated about pain treatment, and materials to guide treatment must be readily available to assist clinicians in writing orders.
  • The organization and all of its professionals must make themselves accountable to all of their patients—ranging from newborns to the elderly—for attentive treatment of pain.
  • Pain must be made “visible” in the organization— routinely charted as a “fifth vital sign" so that unrelieved pain triggers a prompt response.
  • Quality improvement activities may be used to encourage steady improvement in the treatment of pain in the organization.
  • Expert consultants and “high technology" pain treatment interventions such as patient-controlled analgesia and epidural catheters must be available (either within the healthcare organization or by referral) for the minority of cases in which simpler measures do not suffice.
  • Policies on reimbursement for health professionals, medications, and other palliative treatments (e.g., counseling, cognitive treatment for symptoms, and other supportive care), and controlled substance regulations must be designed so that they do not create barriers to symptom treatment.
  • Patients' and families' values and preferences regarding end-of-life care must be respected.

4. Policies to ensure adequate treatment of symptoms should take precedence over legalization of physician-assisted suicide and euthanasia. This position statement seeks to improve symptom relief for all dying patients within the next 5-10 years, not just for the few patients who may request assisted suicide. As discussed in the preceding point, this is a challenging task, requiring considerable effort throughout the healthcare system. Experience in The Netherlands, where there has been relatively little effort to improve pain and symptom treatment, suggests that legalization of physician-assisted suicide might weaken society's resolve to expand services and resources aimed at caring for the dying patient (Foley, 1995; Hendin, 1994). For this reason, the American Pain Society opposes the legalization of physician-assisted suicide and euthanasia at this time.

5. Laws and regulations must provide protection for health professionals to aggressively treat pain with analgesic drugs, and when needed, with terminal sedation, even if these treatments hasten death. At present, physicians and nurses are often reluctant to give large doses of analgesics to dying patients, fearing that they will be subject to prosecution if the drugs contribute to a respiratory arrest. Regulations must specify that an intent to relieve pain, supported by documentation of the patient's report of pain or behaviors that suggest pain (e.g., grimacing or moaning), can justify the use of high doses of analgesics or sedatives, even if these treatments also depress respiration or hasten death in some other way. Such treatment is based on ethical principles that are widely accepted by health professionals and ethicists (Emanuel, 1988) and should not be considered an act of assisted suicide or euthanasia.

6. We must encourage basic and applied research related to the mechanisms and treatment of symptoms of disease. Medical research has traditionally focused on curing disease, with relatively few resources devoted to improving symptomatic treatment. Over the past 20 years, a small group of basic neuroscientists and clinical researchers have focused on the study of pain. The achievements of this research, including the development of spinal opioid treatment, patient-controlled analgesia, sustained-release opioid compounds, and effective new treatments for pain related to nerve injury and migraine, illustrate the dramatic results that biomedical research can produce when applied to symptom research. Now that treatments exist for many types of pain, a crucial research question is how to ensure their broad application. Many other symptoms of advanced illness have had relatively little basic or clinical research, including poor appetite, fatigue, shortness of breath, constipation, and pain related to the heart, gastrointestinal tract, urinary tract, and female reproductive organs. Governmental and private foundations should encourage the development of research in these areas, with particular attention to training young investigators in specialty areas where there is currently little symptom research.

References

American Pain Society Quality of Care Committee. (1995).

Quality improvement guidelines for the treatment of acute pain and cancer pain. Journal of the American Medical Association, 274, 1874-1880. Cleeland, C.S., Gonin, R., Hatfield, A.K., Edmondson J.H., Blum, R.H., Stewart, J.A., et al. (1994).

Pain and its treatment in outpatients with metastatic cancer. New England Journal of Medicine, 330, 592-596. Emanuel E.J. (1988).

A review of ethical and legal aspects of terminating medical care. American Journal of Medicine, 84, 291-301. Foley, K.M. (1995).

Pain, physician-assisted suicide, and euthanasia. Pain Forum, 4, 163-178. Hendin H. (1994).

Seduced by death: Doctors, patients, and the Dutch cure. Issues in Law Medicine, 10, 123-168. Jacox, A., Carr, D.B., Payne, R., Berde, C.B., Brietbart, W., & Cain, J., et al. (1994).

Management of cancer pain. Clinical practice guideline No. 9. Rockville, MD: U.S. Public Health Service, Agency for Health Care Policy and Research. (AHCPR No. 94-0592.) Max, M.B. (1990).

Improving outcomes of analgesic treatment: Is education enough? Annals of Internal Medicine, 113, 885-889

APS Task Force on Pain, Symptoms, and End of Life Care: Mitchell Max, MD, Chair; James Cleary, MD; Betty Ferrell, PhD FAAN; Kathleen Foley, MD; Richard Payne, MD; Barbara Shapiro, MD

The American Pain Society is the U.S. chapter of the International Association for the Study of Pain. Its 3,000 members include many of the leading basic and clinical researchers in the epidemiology, mechanisms, and treatment of acute and chronic pain caused by the range of human diseases. The following position statement has been prepared by the society's Task Force on Pain, Symptoms, and End of Life Care and has been approved by the board of directors.