West Palm Beach, Fla. — Americans suffer needless discomfort and undergo unwanted and costly care as they die, in part because of a medical system ruled by “perverse incentives” for aggressive care and not enough conversation about what people want, according to a report released Wednesday.
Although people repeatedly stress a desire to die at home, free from pain, the opposite often happens, the Institute of Medicine found in its “Dying in America” report. Most people do not document their wishes on end-of-life care and even those who do face a medical system poorly suited to give them the death they want, the authors found.
The result is breathing and feeding tubes, powerful drugs and other treatment that often fails to extend life and can make the final days more unpleasant. The report blamed a fee-for-service medical system in which “perverse incentives” exist for doctors and hospitals to choose the most aggressive care, inadequate training for those caring for the dying, and physicians who default to lifesaving treatment because they worry about liability.
Recommendations of the institute, a private nonprofit arm of the National Academy of Sciences, often make their way into U.S. laws and federal agency policies.
Advance directives including living wills have been unpopular and ineffective, the report says. It urges repeated conversations about patients’ wishes beginning far earlier than many would think — perhaps as teenagers — and continuing the talks throughout life.
“The fee-for-service model, the lack of coordination between medical and social services, the challenges that individuals face in finding a provider who’s willing and knowledgeable to speak with them about death and dying all conspire against them coming up with the right individual plan,” said Philip Pizzo, a doctor who was co-chair with Walker.
Pizzo wrote: “Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background. It is our hope that this report will lead to improvements in end-of-life care and the experience of dying for all.”
Palliative care praised
The report praised programs in palliative care, which focuses on treating pain, minimizing side effects, coordinating care among doctors and ensuring that concerns of patients and their families are addressed. This type of care has expanded rapidly in the past several decades and is now found in a majority of U.S. hospitals, but the report says many physicians have no training in it.
“This report is relevant to persons who are seriously ill, their parents, children, extended families which essentially means every American,” said VJ Periyakoil, director of Palliative Care Education and Training at Stanford University’s School of Medicine, who was not involved in the report.
In many ways, the report is a repudiation of the controversy created by the term “death panel” in response to President Barack Obama’s health care law. The claim centered on the government saving money by deciding who would live and who would die. The controversial proposal never found its way into the law, the 2010 Affordable Care Act.
In fact, the report says the very type of end-of-life care Americans say they want would shrink medical bills and reduce the governmental burden.
“They will have a higher quality of life, and it’s very likely to be less expensive,” said Rep. Earl Blumenauer (D-Ore.), a frequent voice on end-of-life issues who reviewed the report. “But the main key here is that we should be giving people what they want.”
Blumenauer has sponsored a bill to allow Medicare to pay doctors for having end-of-life conversations with patients. That is the very idea that set off the “death panel” fury, which generated the most widespread and high-profile conversations on end-of-life care in the United States since the case of Terri Schiavo, a brain-damaged Florida woman who became the center of a protracted court fight over having her feeding tube removed.
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