WASHINGTONThe nation needs to greatly improve the palliative
and supportive care provided to cancer patients from diagnosis through death,
according to a new report by the National Cancer Policy Board (NCPB), part of
the National Academy of Sciences’ Institute of Medicine. The report made a
series of recommendations intended to break down or lower the barriers to
excellent care for people with cancer.
"In the pursuit of a cure, the nation has almost ignored
the need to reduce the suffering caused by the physical and emotional symptoms
of cancer and the side effects of cancer treatment," Kathleen M. Foley,
MD, who headed the study, said at a press conference. "Nothing would have
a greater impact on the daily lives of cancer patients and their families than
good symptom control and supportive therapy."
Dr. Foley, a neurologist and pain specialist at Memorial
Sloan-Kettering Cancer Center, said that the National Cancer Institute (NCI)
spent less than 1% of its budget in fiscal year 1999 on any aspect of research
or training in palliative and supportive care. "The group that has made
the most important advances in palliative care is the US Department of Veterans
Affairs," she said. "It is now time for the federal government to
develop broader solutions to the barriers that limit advances in palliative
According to the NCPB report, half of all cancer patients
diagnosed today will die of their disease within a few years. For at least half
of these, a spectrum of symptoms will accompany their deaths, including pain,
labored breathing, distress, nausea, confusion, and other physical and
psychological conditions that will go untreated or be undertreated.
"A major problem in palliative care is the
under-recognition, underdiagnosis, and, thus, undertreatment of patients with
significant distress, ranging from existential anguish to anxiety and
depression," the report said.
The report noted that dying patients, when asked about their
concerns about their care, listed psychosocial issues as three of their five
major worries. These concerns were "no prolongation of dying; maintaining
a sense of control; and relieving burdens (conflicts) and strengthening
ties" with their families.
Patients are not the only ones who suffer during the dying
process, the report stated. "The impact on families and caregivers is
still poorly documented, but evidence has begun to be collected demonstrating a
heavy and mostly unrelieved emotional and financial burden."
Problems in palliative care persist despite the fact that one
quarter of Medicare dollars are spent in the last year of life, and half of
that is spent in the last month of life, the report stated.
No single factor accounts for the inadequate palliative and
end-of-life care provided cancers patients, the report said. Rather, the fault
lies in institutional and economic barriers, inadequate availability of
information about what can be achieved, lack of training and education for
health professionals, and "minuscule public sector investments in research
to improve the situation."
The recommendations by the NCPB to address the problem include:
• NCI should designate certain of the cancer centers it
helps to support to play a central role in advancing symptom control and
palliative care for both children and adults. "This would involve, among
other things, carrying out research, delivering excellent palliative care to
all segments of the population treated, training professionals to provide
palliative care, and providing accurate and complete information to the
public," Dr. Foley said.
• NCI should add the requirement of research in
palliative care and symptom control for recognition as a comprehensive cancer
• The Centers for Medicare and Medicaid Services
(formerly the Health Care Financing Administration) (see
article) should fund demonstration projects for service delivery and
reimbursement that integrate palliative care and potentially life-prolonging
treatments throughout the course of the disease.
• Private insurers should provide adequate compensation
for end-of-life care. "In constructing benefit packages, private insurers
should also recognize the special needs of younger people and children with
cancer," Dr. Foley said.
• Organizations that provide information about cancerincluding
NCI, the American Cancer Society, and patient advocacy groupsshould revise
their materials, where appropriate, to include comprehensive and accurate
information about palliative and end-of-life care. "This type of
information is simply absent from most of the materials about cancer
treatment," Dr. Foley noted.
• The best available practice guidelines should dictate
the standard of care for both physical and psychosocial symptoms.
"Practice guidelines are in widespread use for treating cancer and other
diseases, but for palliative care and end-of-life issues, they are in
comparatively early stages of development," Dr. Foley said.
"Professional societies, funding bodies, and payers of care should all act
to completely develop these tools and require that they be used."
• NCI should convene a state-of-the-science meeting to
provide a high profile strategic research agenda that can be pursued by NCI and
its research partners over the short and long terms.
• NCI should establish the most appropriate in-house
locus (or more than one) for palliative care, symptom control, and other
end-of-life research. The report suggested that the site might be the Division
of Cancer Treatment and Diagnosis.
• NCI should review the membership of its advisory
bodies to ensure representation of experts in cancer pain, symptom management,
and palliative care.