Two Duke faculty members lent their expertise to a 21-member nonpartisan committee that called for an overhaul of the national approach to end-of-life care.
The report, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” was released last week. The committee was appointed by the Institute of Medicine, a branch of the National Academy of Sciences.
Karla FC Holloway, the James B. Duke Professor of English as well as a professor of law and women’s studies, and Dr. James Tulsky, chief of Duke Palliative Care, represented Duke on the panel comprised of doctors, nurses, insurers, clergy and lawyers.
“I'm especially pleased that the report focuses on individuals, reminding us all that our health -- from our birth to our dying -- depends on compassionate, knowledgeable care from physicians who appreciate the individuality of patients at the end of life,” said Holloway who offered the committee input on culture, identity and ethics, as well as the need for communication between physicians, patients and the public.
“Knowing the individual means you will also understand how particular expressions of culture, faith, and identity matter at the end of a person’s life,” she said, adding that the panel “thought it critical for physicians to focus on getting to know a person, rather than allowing presumptions about groups to guide their medical judgments. It’s important that providers have the necessary training and skills to provide informed critical care. Navigating the complex architecture of health care in America still begins with somebody’s body.”
After two years of study, the committee found that improving the quality and availability of medical and social services for patients and their families would not only enhance quality of life until death, but may also contribute to a more sustainable and affordable care system overall. The report stressed that the prevalence of poor quality end-of-life care should make the issue a national priority.
Some of the reports' findings are:
-- More family members would like to provide caregiving at the end of life, including medical and nursing tasks, to ensure continuity of care;
-- Palliative care and hospice patients may live longer when provided with access to home care, emotional and spiritual support, well being and dignity;
-- Advance care planning, before disease impairs cognitive and mental functions, ensures patients receive care that reflects their values, goals and preferences;
-- Frequent conversations with patients, initiated by clinicians, about end of life preferences are necessary to avoid unwanted treatment;
-- Many health care providers have not been educated about or are prepared to deliver palliative care;
-- Programs that integrate health care and social services may reduce hospitalizations and health care costs while improving patients’ quality of life;
-- and the health care community needs to do a better job educating the public about the choices available at the end of life.
Specifically, the report offered suggestions on delivery of care, clinician-patient communication and advance care planning, public education, professional development to educate providers and insurance coverage of end-of-life care.
Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policy makers, health professionals, the private sector and the public.
To hear more details about the report, watch the report's release below.