Hostname: page-component-cd9895bd7-gvvz8 Total loading time: 0 Render date: 2024-12-19T16:45:26.834Z Has data issue: false hasContentIssue false

Clinical practice guidelines for the management of psychosocial distress at the end of life

Published online by Cambridge University Press:  01 March 2004

MAURICIO MURILLO
Affiliation:
Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York 10021
JIMMIE C. HOLLAND
Affiliation:
Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York 10021

Extract

After years of neglect, care at the end of life is receiving increasing attention and concern. It is then that the body is consumed by a progressive and mortal illness, and the person must cope not only with the bodily symptoms, but also with the existential crisis of the end of life and approaching death. As the body suffers, the mind is indeed “commanded … to suffer with the body,” as Shakespeare so well described. Thus, suffering near the end of life encompasses both the mind and the body. Providing optimal symptom relief and alleviation of suffering is the highest priority. However, evidence suggests that we continue to fall far short of this ideal (American Society of Clinical Oncology, 1996; Cassem, 1997; Cassel & Foley, 1999; Carver & Foley, 2000). Although pain management guidelines have been the most widely disseminated, we know that many patients continue to suffer not only from pain, but other troubling physical symptoms in their final days (American Nursing Association, 1991; Carr et al., 1994; American Pain Society, 1995; American Academy of Neurology, 1996; American Board of Internal Medicine, 1996; Ahmedzai, 1998). Despite clear advances in the identification and treatment of psychiatric disorders, we continue to underdiagnose and undertreat the debilitating symptoms of depression, anxiety, and delirium in the final stages of life (Carroll et al., 1993; Hirschfeld et al., 1997; Holland, 1997, 1998, 1999; Breitbart et al., 2000; Chochinov & Breitbart, 2000). And, beyond these physical and psychological symptoms, we fall even shorter of our goals of alleviating the spiritual, psychosocial, and existential suffering of the dying patient and family (Cherny & Portenoy, 1994; Cherny et al., 1996; Fitchett & Handzo, 1998; Karasu, 2000). And this is in spite of the ethical imperative “to comfort always” (Pellegrino, 2000).

Type
REVIEW ARTICLE
Copyright
© 2004 Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Ahmedzai, S. (1998). Palliation of respiratory symptoms. In Oxford Textbook of Palliative Medicine, 2nd ed., Doyle, D., Hanks, G.W.C. & MacDonald, N. (eds.), pp. 583616. New York: Oxford University Press.
American Academy of Neurology. (1996). Report of the Ethics and Humanities Subcommittee of the American Academy of Neurology: Palliative Care in Neurology. Neurology, 46, 870872.Google Scholar
American Board of Internal Medicine. (1996). Caring for the dying: Identification and promotion of physician competency. Educational Resource Document. Philadelphia: American Board of Internal Medicine.
American Nursing Association. (1991). Position statement on promotion of comfort and relief of pain in dying patients. Kansas City: American Nursing Association.
American Pain Society Quality of Care Committee. (1995). Quality improvement guidelines for the treatment of acute pain and cancer pain. JAMA, 274, 18741880.Google Scholar
American Psychiatric Association. (2000a). APA Clinical Practice Guidelines for Psychiatric Disorders Compendium 2000. Washington, DC: American Psychiatric Association.
American Psychiatric Association. (2000b). Diagnostic and Statistical Manual of Mental Disorders, 4th ed., Text Revision. Washington, DC: American Psychiatric Association.
American Society of Clinical Oncology. (1996). Outcomes of cancer treatment for technology assessment and cancer treatment guidelines. Journal of Clinical Oncology, 14, 671679.Google Scholar
Baile, W.F., Glober, G.A., Lenzi, & R., et al. (1999). Discussing disease progression and end of life decisions. Oncology, 13, 10211028.Google Scholar
Braun, K.L., Pietsch, J.H., & Blanchette, P.L. (eds.). (2000). Cultural Issues in End-of-Life Decision Making. Thousand Oaks, CA: Sage Publications.
Breitbart, W., Rosenfeld, B., Pessin, & H., et al. (2000). Depression, hopelessness and desire for hastened death in terminally ill patients with cancer. JAMA, 284, 29072911.Google Scholar
Buckman, R. (1998). Communication in palliative care: A practical guide. In Oxford Textbook of Palliative Medicine, 2nd ed., Doyle, D., Hanks, G.W.C. & MacDonald, N. (eds.), pp. 141150. New York: Oxford University Press.
Callahan, D. (1993). The Troubled Dream of Life: In Search of a Peaceful Death. New York: Simon and Schuster.
Carroll, B.T., Kathol, R., Noyes, & R., et al. (1993). Screening for depression and anxiety in cancer patients using the hospital anxiety and depression scale. General Hospital Psychiatry, 15, 6974.Google Scholar
Carver, A.C. & Foley, K.M. (2000). Palliative care. In Cancer Medicine, 5th ed., Holland, J.F., Frei, E., III, Bast, R., Jr., et al. (eds.), pp. 9921000. Hamilton, Ontario, Canada: B.C. Decker.
Cassel, C. & Foley, K. (1999). Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine. New York: Milbank Memorial Fund.
Cassem, N. (1997). The dying patient. In Massachusetts General Hospital Handbook of General Hospital Psychiatry, 4th ed., Cassem, N., Stern, T., Rosenbaum, J., et al. (eds.), pp. 605636. St. Louis: Mosby-Year Book.
Chassin, M.R. & Gavin, R.W. (1998). The urgent need to improve health care quality: Institute of Medicine Roundtable on Health Care Quality. JAMA, 280, 10001005.Google Scholar
Cherny, N., Coyle, N., & Foley, K. (1996). Guidelines in the care of the dying cancer patient. In Pain and Palliative Care, Cherny, N. & Foley, K. (eds.), pp. 261286. Philadelphia: Hematology/Oncology Clinics of North America.
Cherny, N. & Portenoy, R. (1994). Sedation in the treatment of refractory symptoms: Guidelines for evaluation and treatment. Journal of Palliative Care, 10, 3138.Google Scholar
Chochinov, H. & Breitbart, W. (eds.). (2000). Handbook of Psychiatry in Palliative Medicine. New York: Oxford University Press.
Chochinov, H., Holland, J.C., & Katz, L. (1998). Bereavement: A special issue in oncology. In Psycho-oncology, Holland, J.C. (ed.). New York: Oxford University Press.
Fallowfield, L., Lipkin, M., & Hall, A. (1998). Teaching senior oncologists communication skills: Results from phase 1 of a comprehensive longitudinal program in the United Kingdom. Journal of Clinical Oncology, 16, 19611968.Google Scholar
Field, M. & Cassel, C. (eds.). (1997). Approaching Death-Improving Care at the End of Life. Washington, DC: National Academy Press.
Field, M. & Lohr, K. (eds.). (1990). Clinical Practice Guidelines: Directions for a New Program. Washington, DC: National Academy Press.
Field, M. & Lohr, K. (eds.). (1992). Guidelines for Clinical Practice: From Development to Use. Washington, DC: National Academy Press.
Fitchett, G. & Handzo, G. (1998). Spiritual assessment, screening, and intervention. In Psycho-oncology, Holland, J.C. (ed.), pp. 790808. New York: Oxford University Press.
Girgis, A. & Sanson-Fisher, R.W. (1995). Breaking bad news: Consensus guidelines for medical practitioners. Journal of Clinical Oncology, 13, 24492456.Google Scholar
Hastings Center. (1987). Guidelines on the Termination Of Life-Sustaining Treatment and the Care of the Dying: A Report. Briarcliff Manor, NY: Hastings Center.
Hirschfeld, R., Keller, M., Panico, & S., et al. (1997). The National Depressive and Manic-Depressive Association consensus statement on the undertreatment of depression. JAMA, 277, 333340.Google Scholar
Holland, J.C. (1997). Preliminary guidelines for the treatment of distress. Oncology, 11A, 109114.Google Scholar
Holland, J.C. (ed.). (1998). Psycho-oncology. New York: Oxford University Press.
Holland, J.C. (1999). NCCN practice guidelines for the management of psychosocial distress. Oncology, 13(5A), 113147.Google Scholar
Holland, J.C. & Almanza, J. (1999). Giving bad news: Is there a kinder, gentler way? Cancer, 86, 738740.Google Scholar
Hopwood, P., Howell, A., & Maguire, P. (1991). Screening for psychiatric morbidity in patients with advanced breast cancer: Validation of two self-report questionnaires. British Journal of Cancer, 64, 353356.Google Scholar
Ibbotson, T., Maguire, P., Selby, & P., et al. (1994). Screening for anxiety and depression in cancer patients: The effects of disease and treatments. European Journal of Cancer, 30A, 3740.Google Scholar
Institute of Medicine, Field, M., & Cassel, C. (eds.). (1997). Approaching Death: Improving Care at the End of Life. Washington, DC: National Academies Press.
Jacox, A., Carr, D.B., Payne, & R., et al. (1994). Management of Cancer Pain: Adults Quick Reference Guide. No. 9. Rockville, MD: Agency for Health Care Policy and Research, U.S. Department of Health and Human Services.
Jay, R. & Olson, E. (1974). In living and dying. New York: Praeger.
Johanson, G.A. (1993). Midazolam in terminal care. American Journal of Hospital Palliative Care, 10, 1314.Google Scholar
Journal of the National Comprehensive Cancer Network. Vol. 1, No. 3 pp. 344374, July 2003.
Karasu, B. (2000). Spiritual psychotherapy. American Journal of Psychotherapy, 53, 143162.Google Scholar
Kress, J., Pohlman, A., O'Connor, & M., et al. (2000). Daily interruption of sedative infusion in critically ill patients undergoing mechanical ventilation. New England Journal of Medicine, 342, 14711477.Google Scholar
Maguire, P. (2000). Communication with terminally ill patients and their relatives. In Handbook of Psychiatry in Palliative Medicine, Chochinov, H. & Breitbart, W. (eds.), pp. 291301. New York: Oxford University Press.
Maguire, P. & Faulkner, A. (1988). Communicate with cancer patients: 1. Handling bad news and difficult questions. British Medical Journal, 297, 907909.Google Scholar
Massie, M.J., Holland, J.C., & Glass, E. (1983). Delirium in terminally ill cancer patients. American Journal of Psychiatry, 140, 10481050.Google Scholar
Passik, S., Dugan, W., McDonald, & M., et al. (1998). Oncologists' recognition of depression in patients with cancer. Journal of Clinical Oncology, 16, 15941600.Google Scholar
Pellegrino, E. (2000). Ethical issues in palliative care. In Handbook of Psychiatry in Palliative Medicine, Chochinov, H. & Breitbart, W. (eds.), pp. 337348. New York: Oxford University Press.
Post, S., Puchalski, C., & Larson, D. (2000). Physicians and patient spirituality: Professional boundaries, competency, and ethics. Annals of Internal Medicine, 132, 578583.Google Scholar
Ptacek, J. & Eberhardt, T. (1996). Breaking bad news. A review of the literature. JAMA, 276, 496502.Google Scholar
Puchalski, C. & Romer, A. (2000). Taking a spiritual history allows clinicians to understand patients more fully. Journal of Palliative Medicine, 3, 129137.Google Scholar
Razavi, D., Delvaux, N., Farvacques, & C., et al. (1990). Screening for adjustment disorders and major depressive disorders in cancer patients. British Journal of Psychiatry, 156, 7983.Google Scholar
Rousseau, P. (2000). Spirituality and the dying patient. Journal of Clinical Oncology, 18, 20002002.Google Scholar
Singer, P., Martin, D., & Kelner, M. (1999). Quality end of life care—Patients' perspectives. JAMA, 281, 163168.Google Scholar
Speck, P. (1998). Spiritual issues in palliative care. In Oxford Textbook of Palliative Medicine, 2nd ed., Doyle, D., Hanks, G.W.C. & MacDonald, N. (eds.), pp. 805814. New York: Oxford University Press.
Speice, J., Harkness, J., Laneri, & R., et al. (2000). Involving family members in cancer care: Focus group considerations of patients and oncological providers. Psycho-Oncology, 9, 101112.Google Scholar
Twycross, R. & Lichter, I. (1998). The terminal phase. In Oxford Textbook of Palliative Medicine, 2nd ed., Doyle, D., Hanks, G.W.C. & MacDonald, N. (eds.), pp. 977990. New York: Oxford University Press.
Wanzer, S., Federman, D., Adelstein, & S., et al. (1989). The physician's responsibility toward hopelessly ill patients—A second look. New England Journal of Medicine, 120, 844849.Google Scholar
Wilson, K., Chochinov, H., de Faye, & B., et al. (2000). Diagnosis and management of depression in palliative care. In Handbook of Psychiatry in Palliative Medicine, Chochinov, H. & Breitbart, W. (eds.), pp. 2549. New York: Oxford University Press.
World Health Organization. (1996). Report of the WHO Expert Committee on cancer pain relief and active supportive care: Cancer pain relief with a guide to opioid availability. Technical Report Series 804. 2nd ed. Geneva: World Health Organization.
World Health Organization. (1998). Symptom Relief in Terminal Illness. Geneva: World Health Organization.
Zabora, J., BrintzenhofeSzoc, K., Curbow, & B., et al. (2001). The prevalence of psychological distress by cancer site. Psycho-Oncology, 10, 1928.Google Scholar
Zisook, S. (2000). Understanding and managing bereavement in palliative care. In Handbook of Psychiatry in Palliative Medicine, Chochinov, H. & Breitbart, W. (eds.), pp. 321334. New York: Oxford University Press.