Improving Palliative Care for Cancer Summary and Recommendations (2001) / Chapter Skim
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Pages 1-42
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Recognition of the importance of symptom control and other aspects of palliative care from diagnosis through the dying process has been growing, however, and has reached the national health care agenda through the efforts of prominent bodies such as the President's Cancer Panel, the Medicare Payment Advisory Commission, the Institute of Medicine (IOM) , and major health care foundations.
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Dying patients are sick, dependent, changing, and needy. Most likely, high costs would be acceptable if patients and families were satisfied with the care provided for those with advanced disease, but few can count on being satisfied.
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The need for symptom control unrelated to treatment generally increases as a person approaches death, but at least for some patients, it begins much earlier. Symptom control is never, however, a substitute for primary cancer care that is desired by a patient.
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In its report Ensuring Quality Cancer Care (IOM, 1999) one of the Board's recommendations was: "Ensure quality of care at the end of life, in particular, the management of cancer-related pain and timely referral to palliative and hospice care." The current report delves into and expands on that mandate, addressing not only what can be done for people now nearing the end of life, but also setting a course for the development of better treatments and better ways of delivering and paying for them.
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Hospice care also developed around the needs of advanced cancer patients in close association with the cancer establishment. With that head start, cancer professionals are poised to take the lead in other areas of symptom control and the organization and delivery of excellent palliative care.
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Separation of Palliative and Hospice Care Within the Health Care System A major barrier to adequate palliative care has been the institutionalization of a system that focuses on either active therapy or palliative or hospice care and does not allow the appropriate interface between these two approaches. In Part II of the full report, Lynn and O'Mara (Chapter 2)
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have increased the chances that these patients, who are chronically ill and have benefited from hospice care, are likely to be dischargecI. A number of other issues that affect access to and use of hospice services cause concern for patients and hospice providers.
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Inadequate Training of Health Care Personnel Most U.S. physicians oncologists, other specialists, and generalists alike are not prepared by education or experience to satisfy the palliative care needs of dying cancer patients or even to help them get needed services from other providers (Emanuel, 2000~.
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With their focus on the psychosocial aspects of the dying process, they work not only with patients but with those around them in making decisions about treatment options, marshaling resources, helping families cope with terminal illness and death of a relative, and generally encouraging the best quality of life for all concerned. lust as nursing and medicine have begun to do, the social work profession has been examining its education process for preparing practitioners to care for dying patients and their families.
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What is important is that dying patients, in the variety of health care settings in which they receive care, actually get the best treatments. The NCPB report Ensuring Quality Cancer Care (IOM, 1999)
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Delirium APA Practice Guidelines: physically healthy (APA, 2000) NCCN Practice Guidelines: ambulatory care (NCCN, 1999)
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combination NCCN Practice Evidence, Guidelines: ambulatory care (NCCN, 1999) Social problems: NCCN Guidelines practical or for Social Work psychosocial Services: Ambulatory (NCCN, 1999)
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At this early stage in development, there is a strong evidence base to support the use of quality indicators for pain management for the purpose of accountability, and in fact, a standard (not specific to end-of-life care or cancer) has just taken effect through the Joint Commission on Accreditation of Healthcare Organizations (TCAHO)
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Additional questions are specific for cancer (e.g., whether patients are informed of recommended treatments, access to highquality clinical trials)
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Nursing homes increasingly are providing end-of-life care for frail and older Americans. In 1998, an estimated 10 percent of cancer patients died in a nursing home.
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African Americans are also underrepresented in the use of hospice care. In recent years, only 5-7 percent of hospice patients have been African Americans, even though they make up about 14 percent of the total population.
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NCI produces one publication, Advanced Cancer: Living Each Day (1998) , aimed at dying patients and booklets for some specific end-of-life concerns: Eating Hints for Cancer Patients ( 1998 )
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Pharmaceutical companies have begun producing information about symptom control that, not surprisingly, concentrates on their own products. A pharmaceutical firm that produces an antiemetic has little reason to alert people to competing products or approaches, much less treatments for other symptoms.
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Physicians and other health care providers, even at major cancer centers, may not have access to information resources that would facilitate informing their patients. Another illustration relates to advance directives, mandated by law in some states and by hospital policy in some institutions.
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this report but are not within the scope of work. Low Level of Public Investment in Palliative and End-of-Life Care Research Despite billions of dollars spent on research in cancer biology and cancer therapeutics, there has been little investment in research that might significantly alleviate the physical and psychological distress of patients at the end of life.
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Subjective reports of patients about quality of life and symptoms are increasingly accepted as reasonable measures for clinical and laboratory research. Quality-of-life outcomes including aspects of symptom control have become more accepted as clinical trial end points.
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Malignancies were identified only when large or in a critical location, and most often, no treatments were available that substantially altered the course. The fact that cancer patients often lingered a few months, often with disturbing appearance, odors, and suffering, undoubtedly contributed to cancer's special position of abhorrence in the popular mythology.
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. impairment - Conduct clinical trials of - Drugs used empirically for delirium (haloperidol)
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· Develop animal models · Explore common pathways for fatigue and other symptoms · Study relationship of terminal nausea to other symptoms of advanced disease · Determine mechanisms of terminal and treatmentinduced nausea · Develop animal model for cancer-related affective disturbances · Study mechanisms of c epresslon unique to cancer and its treatment and current treatment · Conduct clinical trials of opioids by different routes of at ministration · Conduct clinical trials of other agents (e.g., corticosteroids ) Conduct clinical trials of · Stimulant therapies · Current anticytokines · Selective serotonin receptor uptake inhibitors (SSRIs)
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Even thoroughly tested, effective measures to improve the quality of life of dying patients through symptom control have not been widely adopted; in contrast, the most marginal improvements in chemotherapy to extend life often at reduced quality diffuse remarkably quickly. Our desire to evade and avoid the events associated with death pervades society.
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VA developed a faculty scholars program in palliative care, the requirement that pain be recorded as a "fifth vital sign" for all patients, and hospice programs at all its major hospitals. Other early government steps include the Medicare hospice benefit and the efforts of the Health Resources and Services Administration (HRSA)
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. SUPPORT and HELP were funded solely by the Robert Wood Johnson Foundation at more than $29 million, the largest project ever funded by RWJF (Phillips et al., 2000~.
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SUMMAR Y 3 on care of the dying stories about the project made front-page news in the national press in a way that nothing else had. SUPPORT also catalyzed new thinking about the nature of the problems underlying care at the end of life and about what changes would be needed to fix them.
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The Nathan Cummings Foundation, together with the Commonwealth Fund, supported a major study of nearly 1,000 dying patients (most with cancer, heart disease, or chronic lung disease) and their caregivers.
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The PCP developed its report after a series of meetings around the country, at which a wide range of individuals from the medical treatment and research communities, industry, the advocacy community, and the public at large presented testimony about the quality of cancer care in the United States. Those who spoke about palliative and end-of-life care reinforced earlier findings (PCP, 1998~: Speakers emphasized the need for a compassionate and humane system of care for cancer patients at the end of life, including improved financing of hospice care, expanding the availability of palliative care approaches from hospice programs to cancer centers (including offering palliative care as an option in all clinical trials)
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. .: Acknowledge that death and end of life issues are a part of the cancer experience for some patients, and provide more comprehensive and compassionate care to dying patients and their families.
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. For the long term, ASCO has placed high priority on developing its program called "Optimizing Cancer Care: The Importance of Symptom Management." The curriculum consists of 32 modules covering specific symptoms and symptom control issues (e.g., ascites, breaking bad news, depression, lymphedema)
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report and to the widely publicized SUPPORT findings with an initiative in symptom control and palliative care at a meeting in November 1997. This was by no means NIH's first recognition of research needs in palliative care.
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. , , , ~ tress, and end-of-life issues has been associated administratively with cancer control or cancer prevention, which may be limiting the opportunities for broader research.
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The designation of "comprehensive" is awarded based on a strong and diverse research program, but current requirements do not include a program in palliative care research. Researchers are not prohibited from applying to divisions other than the Division of Cancer Prevention for symptom control or end-of-life research (e.g., DCTD)
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In addition to the research grants, $1.7 million was spent in 1999 on training grants related to end-of-life or palliative care (Beg", 2000~. Altogether, the 1999 NCI expenditure on palliative and hospice care was just over $26 million, or about 0.9 percent of the total 1999 budget of $2.9 billion I
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