Changing Perspectives on Palliative Care
Changing Perspectives on Palliative Care
In their article, Drs. Choi and Billings address a number of strategic areas in palliative care. These topics include the definition and scope of the evolving field, the complexities involved in the use of modalities that carry burden or risk (such as artificial nutrition and bowel decompression), and the underappreciated importance of communication skills and a capacity for ethical reasoning.
The Definition Problem
Palliative care is rapidly evolving in the United States, and its integration into standard cancer care is a major goal. Progress in realizing this goal has been impeded by a variety of factors, including uncertainty about the definition of the term and the manner in which it is implemented in the clinical setting.
Oncologists recognize the obligation to provide comprehensive care to patients with cancer. It is a daunting task, given the variability and severity of the problems encountered by these patients. Early in the disease, efforts to address the psychosocial implications of a life-threatening diagnosis may dominate. With aggressive antineoplastic therapies, the major focus may shift to management of adverse treatment effects, such as nausea and fatigue. If cure is achieved, the concerns may involve late effects of treatment and the complex issues of survivorship.
When cancer becomes a chronic progressive illness, however, problems in multiple categories must be addressed, including symptom distress, progressive physical impairment, psychosocial disturbances, and spiritual concerns. These issues may evolve over a prolonged period that continues for months or years. Finally, when the disease becomes advanced, quality-of-life concerns become linked with challenging end-of-life issues, including the overriding need to provide comfort and prepare both the patient and the family for the process of dying.
The definition of palliative care described by Choi and Billings may help oncologists understand some of the therapeutic implications of these diverse concerns. Palliative care must be distinguished from both supportive care, which most aptly applies to the specific interventions intended to manage the adverse effects of antineoplastic therapies, and comfort care (or end-of-life care). Palliative care refers to the broad range of interventions that address the multidimensional concerns of the patients and families who live with a chronic progressive illness and face the likelihood of death in the foreseeable future.
Palliative Care vs Hospice Care
According to the World Health Organization, palliative care is
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 the achievement of the best possible quality of life for patients and their families.
A committee of the Institute of Medicine notes that
palliative care seeks to prevent, relieve, reduce, or soothe the symptoms of disease or disorder without effecting a cure… Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs…
Although, historically, the goals of palliative care have been strongly expressed through the hospice movement, hospice in the United States is a capitated health-care system focused on end-of-life care and cannot fulfill the larger need for palliative care among cancer patients. Oncologists can use hospice programs to improve care for selected patients who are expected to live less than 6 months and are not candidates for aggressive life-prolonging therapy. However, access to these programs does not obviate either the need for the integration of palliative care with disease-modifying therapies throughout the course of the illness, or the potential need for specialized palliative-care services when hospice is not an option. In reality, most cancer patients receive hospice care for a brief period prior to death.
An Interdisciplinary Approach
Choi and Billings encourage oncologists to accept palliative care as an interdisciplinary therapeutic approach that focuses on comprehensive management of the physical, psychological, social, and spiritual needs of patients with progressive incurable illnesses and their families. It is a model that applies throughout the course of the illness, includes interventions intended primarily to maintain quality of life or attenuate suffering, and is a fundamental aspect of good cancer care.
As death approaches, palliative care must intensify and address specific end-of-life concerns. Communication, continuing assessment of the goals of care, and an understanding of the applicable ethics become important obligations of professional caregivers. At this point, patients and their families must be reassured that their values and decisions will be respected, comfort will become the major priority, practical needs at home will be addressed, and psychosocial and spiritual distress will be managed.
Good palliative care at the end of life may enhance the opportunity for the patient and family to achieve a sense of growth, resolve differences, and find a comfortable closure. It can reduce the suffering and fear associated with dying and prepare the family for bereavement.
Institutionalizing Palliative Care
From this perspective, palliative care is both an approach to patient care that should be routinely integrated with life-prolonging therapies and a model of specialty practice. Palliative-care specialists typically work in teams and usually are needed when the disease is advanced, life expectancy is short, and problems become complex and more urgent. In practice, these problems most often relate to uncontrolled symptoms, conflicting or unclear goals of care, distress related to the process of dying, and increasing family burden.
Hospice programs provide specialist-level care at the end of life for selected patients, most of whom have short life expectancies and are at home. Palliative care, as a specialty, is rapidly evolving beyond this model to become a discipline for highly trained physicians, nurses, social workers, chaplains, and others.
Palliative medicine is the medical specialty dedicated to excellence in palliative care. It is recognized as a medical subspecialty in some countries and is evolving in that direction in the United States. At present, more than 20 training programs in palliative medicine exist nationally and more than 900 physicians have passed the certifying examination of the American Board of Hospice and Palliative Medicine. Major medical texts devoted to palliative care have been published.[4,5]
Palliative-care programs are rapidly developing in US hospitals. Some are limited to an interdisciplinary consultation service and others have more comprehensive services that may include an inpatient unit, a home-care linkage, or integration with a local hospice home-care program. Some specialized palliative-care programs focus on expertise in symptom control, whereas others primarily address practical and ethical issues related to the care of the imminently dying. Programs are also developing to assist institutional leaders in creating palliative-care programs.
Complex Issues in Oncology
Choi and Billings illustrate the knowledge and skills necessary to optimize palliative care for cancer patients throughout the course of the disease. Oncologists should have core skills in palliative medicine, and there is a compelling need to improve educational programming by professional societies in this area. The American Medical Association’s program, Education for Physicians in End of Life Care (EPEC), has attempted to address the need for core competencies in palliative care at the end of life.
The importance of specialized knowledge is highlighted in the examples provided by Choi and Billings. The common anorexia/cachexia syndrome often can be managed via both pharmacologic and nonpharmacologic therapies. Enteral feeding usually adds little benefit when metastatic disease is progressive and unresponsive to therapy.
Honest, empathic communication and ethical reasoning are the cornerstones of palliative care. Choi and Billings note that advance directives are helpful but inadequate. A discussion about health-care proxy, living will, and desire for resuscitation is only part of a broader exploration of the values and decisions that become increasingly relevant as disease progresses. The authors appropriately focus on truth-telling as an important element in the communication process. The practicalities and ethics of sedation in the imminently dying have been explored in the context of oncology practice and emphasize the interplay of symptom management, communication, and ethics.
Many other palliative-care issues could be mentioned. Oncologists may encounter substantial challenges in providing palliative care to specific populations, including the very young, the elderly, some cultural and ethnic groups, and the indigent. Caring for caregivers, including professional caregivers, is not often addressed as part of oncology practice, but is an important element of palliative care.
Palliative-care research is slowly evolving and is a prerequisite for maturation of the field. Randomized trials of symptom management approaches, outcome studies, and quality improvement studies are under way and will accelerate progress in mainstreaming palliative care into oncology practice. An important element in this process is a discussion of the research ethics in this vulnerable population with far advanced disease.
1. World Health Organization: Cancer Pain Relief. Geneva, World Health Organization, 1986.
2. Committee on Care at the End of Life, Institute of Medicine, Field MJ, Cassel CK (eds): Approaching Death: Improving Care at the End of Life, p 31. Washington, DC, National Academy Press, 1997.
3. von Gunten C, Sloan P, Portenoy R, et al: Physician board certification in hospice and palliative medicine. J Palliat Med 3:441-448, 2000.
4. Doyle D, Hanks GW, MacDonald N (eds): Oxford Textbook of Palliative Medicine, 2nd ed. Oxford, Oxford University Press, 1998.
5. Berger A, Portenoy RK, Weismann DE (eds): Supportive Oncology. Philadelphia, Lippincott, 1998.
6. Center to Advance Palliative Care. Available at http://www.capcmssm.org. Accessed February 22, 2002.
7. The EPEC Project: Education for physicians on end-of-life care. Available at http://www.epec.net. Accessed February 22, 2002.
8. Wein S: Sedation in the imminently dying patient. Oncology 14:585-592, 2000.
9. Casarett DJ, Karlawish JH: Are special ethical guidelines needed for palliative care research? J Pain Symptom Manage 20:130-139, 2000.