Psychosomatics 40:1-4, February 1999
© 1999 The Academy of Psychosomatic Medine
Psychiatric Aspects of Excellent End-of-Life Care
John L. Shuster, Jr., M.D.,
William Breitbart, M.D., and
Harvey M. Chochinov, M.D., Ph.D., for the Ad Hoc Committee on End-of-Life Care The Academy of Psychosomatic Medicine
Received March 13, 1998; revised March 17, 1998; accepted August 28, 1998. From the Ad Hoc Committee on End-of-Life Care, The Academy of Psychosomatic Medicine, Chicago, Illinois. Address correspondence and reprint requests to Dr. Shuster, Smolian 227, Department of Psychiatry, University of Alabama at Birmingham, 1700 7th Avenue, South, Birmingham, AL 35294–0018. E-mail: shuster{at}uab.edu
Key Words: Case Report • End-of-Life Care • Death and Dying • Terminal Illness
The Academy of Psychosomatic Medicine's (APM) Executive Council approved a position statement on psychiatric aspects of care provided to patients nearing the end of life at the APM's 1997 annual meeting. The following is an adaptation of that position statement, which can be found in its original form on the Academy's website.1 Other medical societies have also published end-of-life care position statements.2–6
Psychiatric morbidity at the end of life is significant and causes substantial, potentially remediable pain and suffering to dying patients and their families. Despite the fact that quality care for the psychiatric complications of terminal illness is and should be an integral component of excellent, comprehensive end-of-life care, few hospice and palliative care services have access to personnel with the experience or expertise to address psychiatric morbidity in the terminally ill patient. Mental pain and emotional suffering, especially that stemming from depression, appear to play a major role in patient requests for assisted dying. For these reasons, psychiatric aspects of excellent end-of-life care deserve the attention of consultation-liaison (C-L) psychiatrists.
The most basic challenge at the end of life that stresses patients and families is loss, which is related to both the disabilities of the illness (that threaten self-esteem) and the patient's death (that ruptures the direct relationship with the family). Other psychiatric problems and issues commonly seen at the end of life include anxiety symptoms and anxiety disorders, depressive symptoms and depressive disorders, delirium and other cognitive disorders, suicidal ideation, consequences of low perceived family and other social support, personality disorders or personality traits that cause problems in the setting of extreme stress, questions of capacity to make informed decisions, grief and bereavement, and general and health-related quality of life. Spiritual and religious issues, including both personal faith and relationship to a community of believers, are important for most people. Good end-of-life care requires explicit attention to these matters.
Studies show that psychiatric morbidity in the setting of terminal illness is exceptionally high. The reported prevalence rates of delirium in terminal cancer and AIDS (acquired immunodeficiency syndrome) patients range from 25% to 85%,7–11 and the prevalence rates of clinically significant depression range from about 20% to 50%.7–9,12–15 The prevalence of depression among terminally ill patients with a desire for death is eight times higher than in those without a significant desire for death.14 Depression is the strongest determinant of suicidal ideation and desire for death in those with serious or terminal illness.12–15
Psychiatric complications at the end of life are treatable but often go unrecognized and untreated. Several factors or barriers contribute to the underrecognition and undertreatment of psychiatric problems at the end of life. Psychiatric disorders (e.g., anxiety, delirium, depression) are difficult to diagnose with confidence in the setting of significant physical illness, owing to the overlap in the symptoms caused by the psychiatric disorder and the comorbid physical problems. Many patients, family members, physicians, and hospice and palliative care providers hold beliefs in which psychiatric symptoms, especially depression, are viewed as normal parts of the dying process. Many patients and physicians do not understand that patients who have mental disorders at the end of life can respond to treatment. This therapeutic nihilism prevents the search for treatable mental disorders at the end of life.
Structural barriers also contribute to poorly coordinated care for dying patients. Psychiatrists may not be readily available to care for terminally ill patients and to consult with physicians providing end-of-life care for a variety of reasons. Among these are limited geographic access (most consultation-liaison psychiatrists are affiliated with academic medical centers in urban areas), psychiatrists who feel inadequately prepared to assess and treat dying patients, health care insurance "carveouts" (which may limit or exclude access to and coverage for psychiatric care), and logistical obstacles to formal addition of a psychiatrist to a hospice-care team.
The public stigma experienced by patients and families from psychiatric evaluations, and the recognition of this by physicians and other caregivers, may make the assignment of a psychiatric diagnosis less likely when appropriate. Countertransference hopelessness in families and health care providers may discourage them from trying to assess mental illness as a cause of emotional/physical pain and suffering in dying patients and weaken caregiver commitment to helping maintain positive patient morale at the end of life. In addition, treatment based on formal diagnosis (as opposed to symptomatic treatment) is not sufficiently emphasized in palliative care.
We believe that the current enthusiasm for legalized assisted suicide and euthanasia at least partly reflects public concern that mental pain and suffering (including suffering attributable to psychiatric causes) and distress at the end of life may elude or exceed our best current treatment efforts, making death seem preferable. Appropriately aggressive treatment for psychiatric complications of terminal illness is the best way to address this fear, and should reduce requests for assisted suicide and euthanasia.
Laws and regulations must allow physicians to provide appropriately aggressive care for psychiatric complications of terminal illness and must provide protection for qualified physicians who provide this care. For example, excellent treatment of depression at the end of life often requires the use of psychostimulants, most of which are Schedule II controlled substances in the United States. Appropriate use of these agents to control/relieve depression at the end of life should be viewed as analogous to the use of opiate analgesics to treat physical pain in this setting. Similarly, appropriate treatment of agitated and delirious patients who are dying may require sufficient sedation to relieve the emotional suffering of the patient and family. When clinically indicated and acceptable to the patient or surrogate, such sedation is the standard of care and should be used, even if it hastens death. Such treatment is ethically sound and is not an act of assisted suicide or euthanasia.
In response to the aforementioned, remedial efforts must be encouraged. Educational efforts should emphasize the prevalence and morbidity of psychiatric complications in terminal illness. Target audiences should include the general public; students and trainees in all health care professions; and health care providers in hospice and palliative care, primary care, and medical specialties (including psychiatry). Educational and other efforts should be designed to reduce or remove barriers to excellent psychiatric end-of-life care. Educational and advocacy efforts should aim to ensure that legal or regulatory barriers do not hinder or prevent excellent psychiatric care at the end of life.
Finally, a greater focus is needed on clinical (and, where appropriate, basic science) research on the psychiatric complications of terminal illness; their effects on pain and suffering and quality of life in dying patients and their families; interactions with other comorbid conditions such as pain, fatigue, shortness of breath, anorexia, and nausea; and reliable, more effective treatment strategies used at the end of life. Collaboration with governmental funding agencies and private foundations should be encouraged to develop research in these areas. Particular attention should be paid to training young investigators in research related to the psychiatric complications of terminal illness.
FOOTNOTES
The authors thank the members of the Academy of Psychosomatic Medicine (APM) Executive Council for critical manuscript reviews and suggestions that helped clarify the APM's Position Statement on the Psychiatric Aspects of Excellent End-of-Life Care; Drs. Ned Cassem, Charles Ford, Jimmie Holland, Roger Kathol, Stephen Saravay, and Ted Stern of the APM; and Dr. Susan Block of the Project on Death in America, who provided helpful guidance and suggestions. Development of this position statement was stimulated through participation in the Best Practices at the End-of-Life Program sponsored by the Milbank Memorial Fund. The authors are supported by grants from the Faculty Scholars Program of the Open Society Institute's Project on Death in America.
REFERENCES
-
Shuster JL, Breitbart W, Chochinov HM: Psychiatric aspects of excellent end-of-life care: a position statement of the Academy of Psychosomatic Medicine. APM Newsletter, January 1998, website: http://www.apm.org.
-
American Academy of Pediatrics Committee on Bioethics: Guidelines on forgoing life-sustaining medical treatment. Pediatrics 1994; 93:532–536[Abstract/Free Full Text]
-
American Geriatric Society Ethics Committee: The care of dying patients: a position statement from the American Geriatric Society. J Am Geriatr Soc 1995; 43:577–578[Medline]
-
Max M, Cleary J, Ferrell B, et al. for the American Pain Society Task Forceon Pain, Symptoms, and End of Life Care: Treatment of pain at the end of life: a position statement of the American Pain Society. website: http://www.ampainsoc.org/bulletin/apslead.htm
-
American Pain Society Quality of Care Committee: Quality improvement guidelines for the treatment of acute pain and cancer pain. JAMA 1995; 274:1874–1880[Abstract]
-
Field MJ, Cassel CK (eds): Approaching Death: Improving Care at the End of Life. Washington, DC, National Academy Press, Institute of Medicine Committee on Care at the End of Life, 1997
-
Breitbart W, Chochinov HM, Passik S: Psychiatric aspects of palliative care, in Oxford Textbook of Palliative Medicine, 2nd Edition, edited by Doyle D, Hanks GWC, MacDonald N. Oxford, UK, Oxford University Press, 1998, pp. 933–954
-
Shuster JL, Jones GR: Approach to the patient receiving palliative care, in The MGH Guide to Psychiatry in Primary Care, edited by Stern TA, Herman JB, Slavin PL. New York, McGraw-Hill, 1998, pp. 147–165
-
Breitbart W, Bruera E, Chochinov H, et al: Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer. J Pain Symptom Manage 1995; 10:131–141[Medline]
-
Bruera E, Miller MJ, McCallion J, et al: Cognitive failure in patients with terminal cancer: a prospective study. J Pain Symptom Manage 1992; 7:192–195[Medline]
-
Massie MJ, Holland JC, Glass E: Delirium in terminally ill cancer patients. Am J Psychiatry 1983; 140:1048–1050[Abstract/Free Full Text]
-
Chochinov HM, Wilson KG, Enns M, et al: The prevalence of depression in the terminally ill: effects of diagnostic criteria and symptom threshold judgments. Am J Psychiatry 1994; 151:537–540[Abstract]
-
Grassi L, Indelli M, Marzola M, et al: Depressive symptoms and quality of life in home–care-assisted cancer patients. J Pain Symptom Manage 1996; 12:300–307[Medline]
-
Chochinov HM, Wilson KG, Enns M, et al: Desire for death in the terminally ill. Am J Psychiatry 1995; 152:1185–1191[Abstract/Free Full Text]
-
Brown JH, Henteleff P, Barakat S, et al: Is it normal for terminally ill patients to desire death? Am J Psychiatry 1986; 143:208–211[Abstract/Free Full Text]
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