Mammoth report outlines obstacles to EOL care
Mammoth report outlines obstacles to EOL care
Institute of Medicine panel recommends changes
Like other reports that came before it, a one-year review of how people die in the United States concludes that much improvement is needed. However, the exhaustive two-volume report by a 12-member Institute of Medicine (IOM) panel details some significant changes not only in public policy and education, but also in bioethics practices. The Washington, DC-based health policy organization released the report in June.
"Up to now, the cultural assumptions underlying existing practices have not been scrutinized," says Barbara A. Koenig, PhD, senior research scholar and executive director of the Center for Biomedical Ethics at Stanford University in Palo Alto, CA. In providing information for the IOM report, Koenig emphasized the importance of understanding the different cultural perspectives that patients, loved ones, and staff bring to the dying experience.
"It would be inappropriate to structure the debate [on end-of-life care] as if providers uniformly express white middle-class culture in opposition to the ethnic otherness’ of patients," she says.
"The diversity of [health care] professionals and staff workers is adding a major area of complexity to decision making about tubefeeding, treatment of acute illness, and withdrawal of therapeutic intervention."
Koening recommends research into how cultural issues shape end-of-life care and decision making and says changes in bioethics practice should be based on this research. Studies should explore:
• the implications of respecting cultural or ethnic perspectives in bioethics;
• the potential clash between diversity and justice;
• differences between the cultures of patients/families and medical staff and how those differences influence views and assessments of patient outcomes.
Based on research conclusions, Koenig says the functioning, makeup, and structure of the institutional ethics committee will be modified, and family members will become more involved in ethics committee deliberations.
Broad-based changes needed
Koening and others involved in the IOM study call for several broad-based initiatives to improve end-of-life care, including further research in other areas. Suggested improvements include the following:
• Research on symptom relief and the end stages of life must be undertaken immediately.
"We know far too little about how people die, how they prefer to live while dying, and how different kinds of physical, emotional, and spiritual caring might better serve the dying and those close to them," says Christine Cassel, MD, chair of the department of geriatrics and adult development at Mt. Sinai Medical Center in New York City and chairwoman of the IOM committee.
"Priorities need to be established and implemented in biomedical, clinical, psychological, and health services research to fill these major gaps in scientific knowledge," she says.
• The IOM committee asked that the federal government through the National Institutes of Health, the Health Care Financing Administration, and the Agency for Health Care Policy Research sponsor consensus conferences and demonstration projects on end-of-life care and follow up with recommendations for research.
• Legal, organizational, and economic obstacles to excellent care at the end of life must be shattered.
"Federal and state laws, regulations, and policies that prohibit or discourage the appropriate use of pain-relieving drugs should be reformed," Cassel says.
Controls on narcotic drugs are much more stringent than they need to be, and laws regulating prescription of these medications must be changed, the panel members say. Legitimate concerns about drug trafficking are stymieing good pain management, says panel member Robert Burt, MD, a professor of law at Yale Law School in New Haven, CT.
Systems don’t always mean quality care
Health care organizations create system structures that get in the way of good care, the report cites. Problem areas include insufficient numbers and types of properly trained personnel, nonexistent or inadequate protocols for symptom assessment and management, and poor procedures for evaluating the need for patient transfers or referrals and for carrying out such transfers without harm to patients.
• New financing structures must be developed. Demonstration projects should be initiated to test new methods of financing end-of-life care.
"We do not know if improving care of the dying will change overall costs, but we do know that some current funding structures are barriers to good care.
• Medical education goals must include attention to palliative medicine skills.
The committee recommends that the IOM organize a symposium on end-of-life issues for the education of health professionals. The meeting would asses progress in the area of palliative education and identify where further efforts are needed.
[Editor’s note: A copy of the report, Approaching Death: Improving Care at the End of Life, Volumes I and II, is available from the National Academy Press for $45. Telephone: (800) 624-6242.]
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