Guest Editorial
Palliative Care: An Opportunity for Mental Health Professionals
Harvey Max Chochinov, MD, PhD, FRCPC1
The World Health Organization defines 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 psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families (1).
It is noteworthy that embedded within the definition of active total care is attention to patients’ psychological concerns and the needs of their families. My last article in The Canadian Journal of Psychiatry concluded by saying “within the domains of relief and comfort, where palliative care essentially resides, psychiatry has an expanded and vital role to play” (2). As in all areas of medicine, a solid base of empirical research will inform and enhance that role and the appropriate standards to be adhered to within it. In this issue, I am honoured and humbled to present the research of 3 individuals whose work and guidance have profoundly influenced my academic life.
The work these 3 investigators have ushered me into, inspired, or otherwise supported has grappled with the questions of how to achieve a good quality of life nearing death, how to understand the psychological and psychosocial dimensions of individuals facing death, and most recently, how to understand and put into practice the notion of dying with dignity. What remains consistent throughout these studies is how prominently matters of the head and heart figure in those caring for someone who is terminally ill. Our own research, along with the work of many other palliative care investigators, points out that issues such as depression, feeling a burden to others, and loss of hope, meaning, or dignity are as notable and, in many instances, even more notable than physical considerations in determining a patient’s self-rated quality of life or wish to carry on living in the face of approaching death (3–9).
While dying is part of the human condition, dying poorly ought not to be. Investigators have begun to look at the various domains that describe a “good death.” For example, Singer and others determined from qualitative studies that patients’ primary concerns regarding their impending death included receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones (10). Stewart and colleagues developed a conceptual framework based on a review of the literature; it outlines, in the context of health care, various domains that influence the quality of life for dying persons (11). This framework was meant to guide the development of a comprehensive set of outcome measures and to evaluate the quality of life and care that dying persons require. In this issue, Dr Keith Wilson and colleagues introduce a novel approach to measuring symptoms and concerns of dying patients: the Structured Interview for Symptoms and Concerns (SISC) (12). There is no one I thank or blame more (depending on how I am feeling toward my work at any given time) than Keith Wilson for ushering me into the fascinating world of clinical research. His guidance and mentorship saw me through our first series of studies on end-of-life care (3–5). Although he has long since left Winnipeg to relocate in Ottawa at the Rehabilitation Centre–Royal Ottawa Hospital Consortium, his work and standards of excellence continue to inspire me and everyone he collaborates with.
Outcome measures are important in medicine, and this is no less true in palliative care, especially considering that pain and suffering, depression, loneliness, and fear all too often go unattended or are even dismissed as acceptable within the process of dying. Quantifying these experiences where possible provides an informed position from which to initiate appropriate therapeutic responses. The SISC will help measure and track various facets of patients’ experience toward the end of life and will likely find applications within both the research and the clinical arena. As an aside, it is worth mentioning Canada’s distinguished contributions to palliative care outcome measures—in particular, the McGill Quality of Life Questionnaire developed by Dr Robin Cohen, Dr Balfour Mount, and colleagues (13,14) and the Edmonton Symptom Assessment Scale (ESAS) developed by Dr Eduardo Bruera and colleagues (15). These instruments have become part of the palliative care lexicon; no doubt, the SISC will be similarly embraced as a viable and useful way of monitoring the experiences of patients advancing toward death.
I am pleased to introduce readers to the work of Dr Linda Kristjanson, professor of Nursing and Public Health and associate dean of Research and Higher Degrees at Edith Cowan University in Western Australia. She also holds the Cancer Foundation of Western Australia Chair of Palliative Care. Dr Kristjanson is the director of the research division for the Silver Chain Hospice Service and the Charles Gairdner Hospital Cancer Nursing Research Network. I began collaborating with Dr Kristjanson in the early 1990s, when she was with the Faculty of Nursing at the University of Manitoba (and if there appears to be a pattern in my close collaborators’ leaving Winnipeg, it is one I have chosen not to take at all personally). Dr Kristjanson is a preeminent palliative care researcher; her mentorship and example—like Dr Wilson’s—have been inspirational. Dr Kristjanson was part of my research team that examined the issue of dying with dignity. Among her various skills is that of a highly capable qualitative methodologist, which has helped guide this facet of our team’s research.
The field of palliative care is fraught with challenging moral and ethical questions. How does one conduct thorough research in this area and counterbalance the issue of protocol burden? How does one apply the highest standards of excellence to studying dying patients without losing sight of the needs and vulnerabilities of each individual patient and his or her family? Dr Kristjanson has an intuitive ability to weigh these questions—little wonder that her sage advice and wisdom are sought out by research colleagues around the world. She is also recognized as one of the foremost experts on families in the context of end-of-life care. With regard to the theme of Canadians and end-of-life care measurements, some of the standard measures of family satisfaction were developed by Dr Kristjanson (16–18).
In this issue, Dr Kristjanson reviews the various trials facing family caregivers of dying patients (19). (It is noteworthy that our federal government recently passed compassionate leave and job protection legislation allowing families paid time to attend to a dying spouse, parent, or child.) In her review, Dr Kristjanson outlines the various physical, psychological, and financial challenges family caregivers encounter. She cautions that, without sensitivity and attention to their needs, family caregivers are at risk of becoming our future patients. As Dr Kristjanson indicates, enacting measures to safeguard the well-being of family caregivers is good social policy as well as humane medical practice.
Finally, many readers will already be familiar with the work of Dr William Breitbart. His leadership within the fields of psychooncology and palliative care has been widely acknowledged, and his research contributions are considered seminal. We met in 1986, when I first arrived at Memorial Sloan- Kettering Cancer Center. This marked the beginning of nearly 2 decades of ensuing mentorship, colleagueship, and friendship. Dr Breitbart’s research has largely covered, and in many respects defined, the fields of psychooncology and psychiatric palliative care. To offer but a sampling of his impressive body of work, his eclectic range of research has broached areas in pain and physician-assisted suicide (20,21); in the connections between hopelessness, depression, spirituality, and suicide (9,22,23); and in psychometric studies addressing delirium and desire for hastened death (SDHD) (24–26). Further, he undertook one of the few randomized controlled trials examining the efficacy of various pharmacologic approaches for treating delirium in the cancer setting (27,28), as well as studies addressing treatment approaches for depression in patients with cancer (29).
In the last few years, Dr Breitbart has turned his attention to examining the inner life of patients confronting their own mortality. Dr Breitbart and his colleagues have been developing and testing an existential group psychotherapy intervention based in part on the work of Viktor Frankel (30) and targeting patients living with cancer (31). In this issue, they provide insights into how this therapeutic approach evolved and its connection to issues such as meaning, purpose, and hope for patients living with life-threatening or life-limiting illness (32).
In reading the work of these wonderful researchers, it is my hope that a broader community of mental health professionals will begin to consider the deeply gratifying intellectual and clinical opportunities embedded within palliative care. As mentioned, my last article in the CJP concluded that there is an expanded and vital role for mental health professionals in palliative care. Taking up this invitation will enrich your professional life and the care of patients nearing death.
References
1. WHO. Cancer pain relief and palliative care. Technical Report Series 804. Geneva: WHO; 1990.
2. Chochinov HM. Psychiatry and the terminally ill. Can J Psychiatry 2000;45:143–50.
3. Chochinov HM, Wilson KG, Enns M, Lander S. Prevalence of depression in the terminally ill: effects of diagnostic criteria and symptom threshold judgements. Am J Psychiatry 1994;151:537–40.
4. Chochinov HM, Wilson KG, Enns M, Mowchun N, Lander S, Levitt M, and others. Desire for death in the terminally ill. Am J Psychiatry 1995;152:1185–91.
5. Chochinov HM, Wilson KG, Enns M, Lander S. Depression, hopelessness, and suicidal ideation in the terminally ill. Psychosomatics 1998;39:366–70.
6. Chochinov HM, Tataryn D, Dudgeon D, Clinch J. Will to live in the terminally ill. Lancet 1999;354:816–9.
7. Chochinov HM. Dignity conserving care: a new model for palliative care. JAMA 2002;287:2253–60.
8. Chochinov HM, Hack T, Hassard T, Kristjanson L, McClement S, Harlos M. Dignity in the terminally ill; a cross-sectional cohort study. Lancet 2002;360:2026–30.
9. Breitbart W, Rosenfeld B, Pessin H, Kaim M, Funesti Esch J, Galietta M, and others. Depression, hopelessness, and desire for death in terminally ill cancer patients. JAMA 2000;284:2907–11.
10. Singer and others. Quality end-of-life care: patients’ perspectives. JAMA 1999;281:163–8.
11. Stewart AL, Teno J, Patrick DL, Lynn J. The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage 1999;17:93–108.
12. Wilson KG, Graham ID, Viola RA, Chater S, de Faye BJ, Weaver LA, and others. Structured interview assessment of symptoms and concerns in palliative care. Can J Psychiatry 2004;49:350–8.
13. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting. A multi-center Canadian study demonstrating the importance of the existential domain. Palliat Med 1997;11:3–20.
14. Cohen SR. Defining and measuring quality of life in palliative care. In: Bruera E, Portenoy RK, editors. Topics in palliative care. Volume 5. New York: Oxford University Press; 2001. p 137–56.
15. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991;7:6–9.
16. Kristjanson LJ. Validity and reliability testing of the FAMCARE Scale: measuring family satisfaction with advanced cancer care. Soc Sci Med 1993;36:693–701.
17. Kristjanson LJ, Leis A, Koop PM, Carriere KC, Mueller B. Family members’ care expectations, care perceptions, and satisfaction with advanced cancer care: results of a multi-site pilot study. J Palliat Care 1997;13:5–13.
18. Kristjanson LJ, Sloan JA, Dudgeon D, Adaskin E. Family members’ perceptions of palliative cancer care: predictors of family functioning and family members’ health. J Palliat Care 1996;12:10–20.
19. Kristjanson LJ. Palliative care for families: remembering the hidden patients. Can J Psychiatry 2004;49:359–65.
20. Breitbart W. Psychiatric complications of cancer pain. Clin J Pain 1990;16:76–8.
21. Breitbart W, Rosenfeld, Passik SD. Interest in physician-assisted suicide in ambulatory HIV-infected patients. Am J Psychiatry 1996;153:238–42.
22. McClain CS, Rosenfeld B, Breitbart W. The influence of spirituality on end-of-life despair among terminally ill cancer patients. Lancet 2003;361:1603–7.
23. Nelson CJ, Rosenfeld B, Breitbart W, Galietta M. Spirituality, religion and depression in the terminally ill. Psychosomatics 2002;43:213–20.
24. Breitbart W, Rosenfeld B, Roth A, Smith MJ, Cohen K, Passik S. The Memorial Delirium Assessment Scale. J Pain Symptom Manage 1997;13:128–37.
25. Rosenfeld B, Breitbart W, Stein K, Funesti-Esch J, Kaim M, Krivo S, and others. Measuring desire for death among the medically ill: the schedule of attitudes towards hastened death. Am J Psychiatry 1999;156:94–100.
26. Breitbart W, Gibson C, Tremblay A. The delirium experience: delirium recall and delirium-related distress in hospitalized cancer patients, their spouses/caregivers, and their nurses. Psychosomatics 2002;43:183–94.
27. Breitbart W, Marotta R, Platt MM, Weisman H, Derevenco M, Grau C, and others. A double-blind comparison trial of haloperidol, chlorpromazine, and lorazepam in the treatment of delirium in hospitalized AIDS patients. Am J Psychiatry 1996;153:231–37.
28. Breitbart W, Tremblay A, Gibson C. An open trial of olanzapine for the treatment of delirium in hospitalized cancer patients. Psychosomatics 2002;43:175–82.
29. Breitbart W, Rosenfeld B, Kaim M, Funesti Esch J. A randomized, double-blind, placebo controlled trial of psychostimulants for the treatment of fatigue in ambulatory patients with HIV disease. Arch Intern Med 2001;161:411–20.
30. Frankl, VF. Man’s search for meaning. 4th ed. Boston: Beacon Press; 1992.
31. Greenstein MG, Breitbart W. Cancer and the experience of meaning: a group psychotherapy program for people with cancer. Am J Psychother 2000;54:486–500.
32. Breitbart W, Gibson C, Poppito SJ, Berg A. Psychotherapeutic interventions at the end of life: a focus on meaning and spirituality. Can J Psychiatry 2004;49:366–72.
Author
1. Canada Research Chair in Palliative Care and Director, Manitoba Palliative Care Research Unit; Professor, Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba.
|
