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
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
Palliative Care vs Hospice Care
According to the World Health Organization, palliative care
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
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.
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2. Committee on Care at the End of Life, Institute of Medicine,
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3. von Gunten C, Sloan P, Portenoy R, et al: Physician board
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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
9. Casarett DJ, Karlawish JH: Are special ethical guidelines
needed for palliative care research? J Pain Symptom Manage 20:130-139, 2000.