Dying without dignity? Americans get treatments they don't want, study finds

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.

Though 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 life-saving treatment because they worry about liability.

"It's not an intentional thing. It's a systemic problem," said David Walker, the former U.S. comptroller general, who co-chaired the committee that issued the report.

Advance directives including living wills have been unpopular and ineffective, the report said. It urged 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 Dr. Philip Pizzo, a co-chair with Walker.

The report praised programs in palliative care, which focuses on treating pain, minimizing side effects, coordinating care among doctors and ensuring 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 said many physicians have no training in it.

In many ways, the report is a repudiation of the controversy created by the term "death panel" in response to the President Barack Obama's health care law. The claim centered on the government saving money by deciding who would live and who would die.

In fact, the 500-page report authored by 21 experts said 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-Oregon, 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, 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 U.S. since the case of Terri Schiavo. She was a brain-damaged Florida woman who became the center of a protracted court fight over having her feeding tube removed.