Panel issues end-of-life recommendations
Catholic systems report on terminal care model
The prestigious Institute of Medicine s (IOM) Committee on Care at the End of Life issued in June a massively researched two-volume report, Approaching Death: Improving Care at the End of Life.
The report declares that "a humane care system one that people can trust to serve them well as they die is an achievable goal, but realizing it will require many changes in attitudes, policies, and actions."
Despite signs the health care system is now taking end-of-life issues more seriously, "Americans have come to fear that they will die alone and that they will die in distress or pain," says committee chairwoman Christine Cassel, MD, chairwoman of geriatrics and adult development at The Mount Sinai Medical Center in New York City. "This does not have to be the case."
The 12-member committee reviewed the end-of-life literature, held two public hearings, met with end-of-life professionals, and participated in an outcomes workshop sponsored by the Center to Improve Care of the Dying at George Washington University in Washington, DC. IOM is a branch of the National Academy of Sciences, a quasi- governmental advisory body. Its recommendations should be seen by policy-makers as more impartial and, thus, more persuasive than those from medical trade associations, says Kathleen Foley, MD, director of the Project on Death in America, a major funder of this project.
"Too many people suffer needlessly at the end of life both from errors of omission when caregivers fail to provide palliative and supportive care known to be effective and from errors of commission when caregivers do what is known to be ineffective and even harmful," the report states. Legal, organizational, and economic obstacles also "conspire to obstruct reliably excellent care at the end of life [while] . . . the education and training of physicians and other health care professionals fails to provide them with the knowledge, skills, and attitudes required to care well for the dying patient."
The report emphasizes the importance of treating avoidable pain in dying patients and calls for changes in drug prescription laws and regulations that now impede effective use of opioid pain medications. The culture of medicine also must change to view death more realistically, while public discussion is needed for a better understanding of the modern experience of dying and the community’s obligations to those approaching death.
Among IOM’s other recommendations:
- Health professionals should commit themselves to improving care for dying patients and using existing knowledge more effectively.
- Palliative care should be established as a defined area of medical expertise, education, and research.
- The national research establishment should work to strengthen the end-of-life knowledge base.
- New insurance and other payment options for patients at the end of life should be tested.
- Improved quality-of-life and outcomes measurement methods tools also should be developed.
Hospice care was a significant part of what the committee examined. Only a minority of all deaths in this country now involve care by formal hospice programs, the report notes. "Although all patients can potentially benefit from good palliative care, hospice programs as organized and financed in the United States are most applicable to those with relatively predictable prognoses," primarily cancer. A press release issued with the report notes that hospice "does not match the needs of all patients such as those with heart problems or Alzheimer’s disease. Medicare should test other options."
However, this should not be seen as damning the hospice movement with faint praise, Foley asserts. "The report is very supportive of hospice and the expansion of hospice. It says that without question, nothing would make a greater difference than utilizing what we now know about hospice and palliative care. Why aren’t we making it more available here and now?" she says.
"I read the report as saying that hospice is an important model of end-of-life care that everyone should learn from. Hospice is showing us the way," adds Diane Meier, MD, Cassell’s colleague and director of a new palliative care program at Mount Sinai. "Unfortunately, hospice turns down three out of four of my patients because they’re not dying fast enough, and the hospice fears retroactive denials. We have to increase access to hospice and not be so rigid about the six-month prognosis," Meier says. "We also have to make sure hospice and palliative care as developed by hospice are made available to every dying patient, wherever they may be. The report calls for better funding and broader access. What we need now is integration. In an academic medical center setting like ours, we both need each other."
Coalition also issues end-of-life report
A coalition of Catholic health systems also announced results from its research on end-of-life care in presentations at the Annual Assembly of the Catholic Health Association of the United States in Chicago in June. Supportive Care of the Dying: A Coalition for Compassionate Care is an initiative composed of five large, integrated Catholic health care systems and the Catholic Health Association.
This coalition has been studying end-of-life care and working on its own model of comprehensive community-based care since 1995, building on results from more than 40 consumer focus groups of patients with life-threatening illnesses, family caregivers, the bereaved, health professionals, and the community at large.
Presentations in Chicago included videotapes and actors who portrayed focus group participants, reports the coalition’s national coordinator, Alicia Super, RN. The assistant director for medical education at Providence Health System in Portland, OR, Marion Hodges, MD, spoke on what she has learned for her own medical practice from this project. An executive summary of the coalition’s report, Living and Healing During Life-Threatening Illness, mainly highlighting results from the focus groups, was released at the meeting.
New model to be tested
Based on focus groups, the coalition’s next steps will be testing a new model of community-based care for individuals with life-threatening illnesses and a professional mentoring program that will start with training and confidence-building for physicians. Initial testing will probably be done in two culturally diverse communities: African-American and Hispanic. "Hints from the focus groups suggest that those communities handle death and dying in very different ways, which we want to learn from," Hodges explains.
The coalition’s proposed model of end-of-life care builds on hospice concepts and "affirms the hospice philosophy of integrated care at the end of life." But it also recognizes current barriers to the utilization of hospice and recommends improving "hospice programs through provider training."
Other recommendations for "truly reformed care" at the end of life include building a partnership between the health care system and the community, replacing traditional medical hierarchies with collaborative teams, emphasizing flexible, patient-centered care, and funding "programs that promote community-based spiritual, emotional, and relational healing for the dying and their families," the executive summary states.
[Copies of the IOM report may be purchased from National Academy Press, (800) 624-6242. For more information on the Catholic coalition and its report, contact Alicia Super at (503) 215-5053.]
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