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Journal of Clinical Oncology, Vol 20, Issue 3 (February), 2002: 624-626
© 2002 American Society for Clinical Oncology


EDITORIALS

Attending to Psychologic Symptoms and Palliative Care

Manish Agrawal, Ezekial J. Emanuel

Center for Clinical Bioethics and Center for Cancer Research, Warren G. Magnuson Clinical Center, National Cancer Institute, National Institutes of Health, Bethesda, MD

IMPROVING THE care of patients at the end of life is no longer the concern of just a few health care professionals, advocating for it to be a focus of clinical research and education. Increasingly it is being recognized as an important goal of medical care.1 Quality end-of-life care is particularly important for oncologists; nearly half of people diagnosed with cancer will die from it. In recent years, there have been important efforts to improve the education and training of physicians in end-of-life care. For instance, the National Cancer Policy Board has just released a report entitled "Improving Palliative Care for Cancer."2 The Education for Physicians on End-of-life Care Project has become a model program for the education of physicians about quality end-of-life care. The American Society of Clinical Oncology (ASCO) has also endeavored to stress palliative care by making it the theme of the Presidential Symposium in 1998 and by creating an Education Committee subcommittee on pain and symptom management. Additionally, ASCO devoted a symposium at the annual meeting to symptom management and recently published a curriculum entitled "Optimizing Cancer Care—The Importance of Symptom Management." The Journal of Clinical Oncology has also launched a column entitled "The Art of Oncology" to further promote quality symptom management. Beyond education, research on end-of-life care is maturing, with increasingly rigorous studies asking more sophisticated questions. Importantly, this discipline has become an international effort, with rigorous landmark research emerging from many countries.3-7

By studying the use of terminal sedation, Morita et al8 address the particularly difficult and frequently neglected issue of psychologic distress in cancer patients at the end-of-life. Their findings demonstrate that up to 50% of Japanese oncologists and palliative care physicians surveyed chose continuous-deep sedation as a possibility or strong possibility for managing cases of depression and delirium. Physicians less confident about proper care for psychologic distress and those with burnout were significantly more likely to use continuous-deep sedation. Morita et al also note that physicians who were less involved in caring for the terminally ill and less likely to specialize in palliative medicine were less likely to use psychiatric treatments in patients with depression and other psychologic problems.

PSYCHOLOGIC SYMPTOMS

Pain and other physical symptoms have been the central focus in end-of-life care. Although these symptoms are important, they do not tell the whole story. As Portenoy et al9 have shown, pain and lack of energy are among the top five symptoms reported by patients with advanced cancer, but so are symptoms of psychologic distress, especially depression and anxiety. More than one third of dying patients may be depressed, and more than one half of patients with advanced cancer feel sad, anxious, and irritable.10-13 Increased psychologic distress contributes to suicide rates that are higher for terminally ill cancer patients than for the population at large.14

Addressing depression and psychologic distress in dying patients is particularly difficult for oncologists. First, symptoms such as disruption of sleeping patterns, changes in appetite, and loss of energy are frequently caused by the underlying cancer and not indicative of psychologic morbidity, making it more difficult to diagnose depression. Second, there is inadequate training in identifying and treating psychologic symptoms in the terminally ill. Oncologists take care of dying patients every day and yet most training programs have not emphasized developing the complex skills needed to manage depression and other psychologic symptoms. The 1998 survey of ASCO members reported at the Presidential Symposium revealed that although more than 90% of oncologists felt competent to manage nausea and vomiting and pain, only 50% felt similarly competent to manage depression. Third, there is a general uneasiness about psychologic distress and discussing end-of-life issues with patients. A common but misplaced view is that it is normal for dying patients to be depressed. Talking to someone about his or her imminent death, limited therapeutic options, and addressing his or her unique psyche can be stressful, time-consuming, and require skills not cultivated in everyday life. Finally, it is simply difficult to address these issues. Even if there is adequate training, general comfort in discussing death and dying, and recognition of psychologic symptoms, its treatment is a complex and time-consuming process. Having to counsel distraught family members as well as the dying patient adds further complexity. Frequently, there is no magic bullet.

POTENTIAL SOLUTIONS

The data presented by Morita et al8 suggest potential solutions. Research specifically directed at psychologic distress in dying patients is needed.1,6 Dying patients are unique, and knowledge of the diagnostic criteria and treatment of psychologic distress in other populations may not apply to them.12 Furthermore, some patients seem to come to terms with their death and experience a good death while others seem to suffer much more. We do not know what makes patients experience distress differently. Consequently, research on predictors of psychologic distress in cancer patients is needed. These predictors could then help the oncologist determine when to refer a dying patient to a psychiatrist and how best to use the psychiatric and palliative care services. We also need better interventions for the terminally ill. Antidepressants that work quickly, anxiolytics that do not cause drowsiness, and better interventions for confusion and delirium are needed.15

Attention to the availability of palliative care services is also important. The 1998 ASCO end-of-life care survey indicated that more than half of United States oncologists did not have ready access to palliative care services. The situation is likely to have improved in the last few years, yet physicians in private practices and at smaller hospitals are still likely to have limited access to such interventions. Whether routine use of such services improves the care of terminally ill cancer patients is controversial,6,7 but having access to such services may be useful in caring for selected, difficult-to-manage patients and is likely to help educate oncologists in symptom management.

Another aspect of enhancing the treatment of psychologically distressed patients requires a focus on their physicians. Increasingly, we are recognizing that physician burnout is an important issue in oncology and needs to be addressed.16-19 Studies of physicians in the United States and Finland suggest the higher burnout specialties are those "dealing with chronically ill, incurable, or dying patients."20 It is therefore, no wonder that 56% of oncologists seem to experience burnout sometime in their professional life.21 Morita et al8 report that higher levels of exhaustion influence physicians’ decisions regarding the care of dying patients. Despite awareness of its high prevalence and importance, there are very little data on what the precise causes of emotional exhaustion are and how to prevent burnout. Interventions that reduce oncologists’ burnout could be expected to help improve care for patients, too.

Most importantly, the findings of Morita et al8 also suggest the higher volume/greater experience/better outcomes association is likely to hold in this area, too. Japanese physicians who were more involved in end-of-life care and more likely to have specialized in palliative medicine had greater confidence with symptom management and were more likely to provide appropriate psychiatric treatment. This finding confirms the data found in the ASCO end-of-life care survey of oncologists indicating that oncologists with less training in symptom management and communication about end-of-life care were more likely to opt for chemotherapy for terminally ill patients and were less likely to recommend hospice care. There should be required formal education in symptom management during oncology fellowship training. Furthermore, the examination for accreditation of oncologists should have additional questions testing the diagnosis and treatment of psychologic symptoms in cancer patients, both to acknowledge the importance of this area and to ensure proper attention to these issues by fellowship programs.

Providing optimal care for terminally ill oncology patients is both difficult and important. Psychologic symptoms, especially depression and anxiety, are among the most common symptoms experienced by these patients. Although we have made important strides in addressing physical symptoms, this study suggests there is still much mismanagement regarding patients’ psychologic distress. Indeed, oncologists themselves recognize that they are not nearly as competent in addressing the psychologic symptoms of the dying as they are in addressing pain and other physical symptoms. A growing body of data suggests that specific training and education on end-of-life care can improve care for dying patients. Fortunately, there are excellent educational curricula for these symptoms and end-of-life care in general. The real challenge is to ensure that oncology fellows and practitioners get the appropriate training and access to palliative care services to address appropriately depression and anxiety, so that their response is not to opt for terminal sedation.

REFERENCES

1. Field MJ, Cassel CK: Approaching Death: Improving Care at the End of Life. Washington, DC, National Academy Press, 1997

2. Foley KM, Gelbank H: Improving Palliative Care for Cancer. Washington, DC, National Academy Press, 2001

3. Jordhøy MS, Fayers P, Loge JH, et al: Quality of life in palliative cancer care: Results from a cluster randomized trial. J Clin Oncol 19: 3884-3894, 2001[Abstract/Free Full Text]

4. Chochinov H: Psychiatry and terminal illness. Can J Psych Mar 45: 143-150, 2000

5. Pereira J, Bruera E: Depression with psychomotor retardation: Diagnostic challenges and the use of psychostimulants. J Palliat Med 4: 15-21, 2001[CrossRef][Medline]

6. Higginson IJ, Hearn J, Myers K, et al: Palliative day care: What do services do? Palliative Day Care Project Group. Palliat Med 14: 277-286, 2000[Abstract/Free Full Text]

7. McLachlan S, Allenby A, Matthews J, et al: Randomized trial of coordinated psychosocial interventions based on patient self-assessments versus standard care to improve the psychosocial functioning of patients with cancer. J Clin Oncol 19: 4117-4125, 2001[Abstract/Free Full Text]

8. Morita T, Akechi T, Sugawara Y, et al: Practices and attitudes of Japanese oncologists and palliative care physicians concerning terminal sedation: A nationwide survey. J Clin Oncol 20: 758-764, 2002[Abstract/Free Full Text]

9. Portenoy RK, Thaler HT, Kornlith AB, et al: The memorial symptom assessment scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 30: 1326-1336, 1994

10. Seal C, Cartwright A: The Year Before Death. Brookfield, VT, Avebury, 1994

11. Akechi T, Nakano T, Uchitomi Y, et al: Psychiatric disorders in cancer patients: descriptive analysis of 1721 psychiatric referrals at two Japanese cancer center hospitals. Jpn J Clin Oncol 31: 188-194, 2001[Abstract/Free Full Text]

12. Chochinov HM, Wilson KG, Enns M, et al: Prevalence of depression in the terminally ill: Effects of diagnostic criteria and symptom threshold judgments. Am J Psychiatry 151: 537-540, 1994[Abstract]

13. Donnelly S, Walsh D: The symptoms of advanced cancer. Semin Oncol 22: S67-72, 1995

14. Allebeck P, Bolund C, Ringback G: Increased suicide rate in cancer patients: A cohort study based on the Swedish cancer register. J Clin Epidemiol 42: 611-616, 1989[CrossRef][Medline]

15. Akechi T, Okamura H, Yamawaki S, et al: Why do some cancer patients with depression desire an early death and others do not? Psychosomatics 42: 141-145, 2001[Abstract/Free Full Text]

16. Abeloff MD: Burnout in oncology: Physician heal thyself. J Clin Oncol 9: 1721-1722, 1991[Medline]

17. Penson RT, Seiden MV, Lynch TJ, et al: Caring for colleagues. Oncologist 6: 197-204, 2001[Abstract/Free Full Text]

18. Penson RT, Dignam FL, Lynch TJ, et al: Burnout: caring for the caregivers. Oncologist 5: 425-34, 2000[Abstract/Free Full Text]

19. Felton JS: Burnout as a clinical entity: Its importance in health care workers. Occup Med 48: 237-250, 1998[Abstract/Free Full Text]

20. Olkinuora M, Asp S, Juntunen J, et al: Stress symptoms, burnout and suicidal thoughts in Finnish physicians. Soc Psychiatry Psychiatr Epidemiol 25: 81-86, 1990[Medline]

21. Whippen DA, Canellos GP: Burnout syndrome in the practice of oncology: Results of a random survey of 1,000 oncologists. J Clin Oncol 9: 1916-1920, 1991[Abstract]




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