Palliative medicine is the study and management of patients with
active, progressive, far-advanced disease for whom the prognosis is limited
and the focus of care is quality of life. This discipline recognizes the multidimensional
nature of suffering and responds with care that addresses all aspects of suffering.
Palliative care originally referred to the care of patients with terminal illnesses,
but now it refers to the care of patients with life-limiting illnesses, whether
or not they are imminently dying. Philosophically, the relief of suffering and
the enhancement of a patient’s quality of life are primary objectives of both
hospice and palliative care. Although general hospice and palliative care approaches
are similar and may be provided along the illness trajectory for patients with
advanced noncurable diseases, hospice care is generally provided during the
latter segments of the continuum due to the current reimbursement system in
the United States.
Despite increased societal concern about end-of-life care issues,
there is no clear indication that care for most patients with advanced life-limiting
illnesses has recently improved. Increased attention has been given to hospice
and palliative medical education; however, in practice, the majority of physicians,
residents, and medical students have received sporadic and nonstandardized training
in the principles and practice of caring for patients with advanced life-limiting
illnesses.
As our population continues to age, we will be faced with greater
numbers of patients with advanced life-limiting illnesses. Health care professionals
will see an increasing need to provide optimal care for these patients. The
Institute of Medicine recently provided several recommendations regarding end-of-life
care.1 Some of these recommendations include the following: (1) People
with advanced potentially fatal illnesses and those close to them should be
able to expect and receive reliable, skillful, and supportive care. (2) Health
professionals must commit themselves to improving care for dying patients and
to use existing knowledge effectively to prevent and relieve pain and other
symptoms. (3) Educators and other health professionals should initiate changes
in undergraduate, graduate, and continuing education to ensure that practitioners
have relevant attitudes, knowledge, and skills to provide appropriate care for
dying patients. (4) Palliative care should become, if not a medical specialty,
at least a defined area of expertise, education, and research.
To begin or advance the education for those involved in or interested
in end-of-life and palliative care, the University of South Florida College
of Medicine, LifePath Hospice, and the H. Lee Moffitt Cancer Center & Research
Institute sponsored a major palliative care conference in Tampa, Florida, on
November 20, 1998. The success of this conference clearly demonstrated health
professionals’ interest and the need for ongoing education in this very important
yet young field. The conference was endorsed by the Florida Chapter of the American
Academy of Hospice & Palliative Medicine, Florida Hospice, Inc, and the
Florida Cancer Pain Initiative.
This issue of Cancer Control contains some of the proceedings
from this palliative care conference. Highlights from the conference have been
selected that are thought to be of interest to the readers of this journal.
Joanne Lynn, MD, MA, MS, reviews the current state of death and dying and end-of-life
care in the United States from a societal and research perspective, including
highlights from the Study to Understand Prognoses and Preferences for Outcomes
and Risks of Treatments (SUPPORT).2 The challenges presented by our
current health care system and the methods of addressing reform for this system
to provide the highest quality palliative and end-of-life care are discussed.
We are now beginning to see major efforts to improve the care of patients with
advanced chronic diseases near the end of life.
Unrelieved pain is a common cause of suffering. Control of pain
and other physical symptoms is one of the major goals of palliative care. Significant
pain may be reported by 70% to 90% of cancer patients with advanced disease.3
Many patients experience severe pain because they do not receive adequate therapy.
Pauline Lesage, MD, and Russell Portenoy, MD, present specific recommendations
for the assessment and management of pain in patients with cancer. They emphasize
that successful treatment of cancer pain requires therapies that address the
etiology of pain, the patient’s medical status, and the goals of care. Utilization
of pharmacologic and nonpharmacologic approaches, as well as disease-oriented
interventions, are discussed as important parts of overall pain management.
This issue includes two additional articles on the physical aspects
of palliative care. Sebastiano Mercadante, MD, reviews the efficacy of the World
Health Organization’s analgesic ladder approach to cancer pain management. Although
there may be some limitations in the clinical application of this approach in
a small number of patients, the importance of utilizing this tool educationally
in an attempt to raise the overall standard of cancer pain management cannot
be overestimated. The use of opiate analgesics is associated with several potential
side effects, one of which is constipation. This subject is addressed by Susan
McMillan, PhD, RN, who reviews the prevalence, etiology, assessment, and management
of constipation. If not well managed, constipation can negatively affect the
quality of life of many patients.
The potential sources of suffering experienced by patients with
advanced noncurable diseases are not limited to pain and physical symptoms.
Multiple psychosocial and spiritual issues can affect a patient’s quality of
life near the end of life and need to be appropriately addressed. Our society
is now facing a critical discussion on the application of physician-assisted
suicide. Current research suggests that in addition to addressing physical pain
and symptom control, attending to issues of depression, social support, and
other psychosocial issues can reduce suffering and perhaps requests for assistance
with suicide in patients near the end of life. William Breitbart, MD, and Barry
Rosenfeld, PhD, critically review the area of physician-assisted suicide, particularly
from a psychosocial and psychiatric perspective. Recommendations for clinicians
of patients who express suicidal ideations or a desire for hastened death are
presented.
Robert Walker, MD, presents many ethical issues that surface and
are well intertwined in the care of patients near the end of life. The effect
of advanced technology on the provision of compassionate medical care for these
patients is discussed. Issues of shared decision making, futility, the right
to refuse medical treatment, and the removal of patients from life-sustaining
treatment are also discussed.
The current health care reimbursement system in the United States
generally limits the provision of comprehensive multidisciplinary care for patients
near the end of life to those receiving hospice care who have "a life expectancy
of less than six months, should the disease take its normal course." In
cancer patients, and even more so in noncancer patients, health professionals
poorly assess prognosis by typically underestimating life expectancy, thus limiting
the access to good care for many patients with advanced noncurable diseases.
Brad Stuart, MD, presents guidelines that have been developed to assist health
professionals with assessing prognosis in advanced disease in both cancer and
noncancer patients. Although not yet validated, these guidelines can be a useful
adjunct to reasonable clinical judgment as they have been incorporated into
policy by many of Medicare’s fiscal intermediaries (particularly the noncancer
guidelines) as requirements for reimbursement by Medicare for hospice services.
Therapeutic approaches for patients with advanced noncancer primary illnesses
or noncancer comorbid illnesses are also discussed.
Presenting several important and timely topics in palliative care,
this issue of Cancer Control was developed to enlighten and educate its
readers about this relatively young and exciting field. Major efforts are underway
to provide education and awareness about this expanding field. As our society
continues to age, health professionals will see increasing numbers of patients
with advanced life-limiting illnesses and should be prepared to offer all reasonable
options available to them. Patients should have opportunities to receive high-quality
palliative care throughout their entire illness trajectory. In addition to traditional
treatment goals, relieving patients’ suffering and optimizing their quality
of life should remain high priorities for all health care professionals.
Ronald S. Schonwetter, MD, FACP
1. Approaching Death: Improving Care at the End of Life.
Committee on Care at the End of Life. Division of Health Care Services, Institute
of Medicine. In: Field MJ, Cassel CK, eds. Washington, DC: National Academy
Press; 1997.
2. A controlled trial to improve care for seriously ill hospitalized
patients: the Study to Understand Prognoses and Preferences for Outcomes and
Risks of Treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA.
1995;274:1591-1598.
3. Cleeland CS, Gonin R, Hatfield AK, et al. Pain and its
treatment in outpatients with metastatic cancer. N Engl J Med. 1994;330:
592-596.
The Palliative Care Conference was supported by Anesta, the Purdue
Frederick Co, Roxane Laboratories, the Banyan Foundation, H. Lee Moffitt Cancer
Center & Research Institute, Knoll Pharmaceuticals, Ortho McNeil Pharmaceuticals/Janssen
Pharmaceutica, Faulding Laboratories, St. Joseph’s Hospital, Hospice Pharmacia,
Abbott Laboratories, Eli Lilly, Florida Cancer Pain Initiative, Florida Hospice
Inc, Good Shepherd Hospice, Hospice of the Florida Suncoast, and Roche Pharmaceuticals.