"Dying in America is harder than it has to be."
That's the headline of one of the stories published following the release of the Institute of Medicine's 500-page report titled "Dying in America." The report tackles head-on the difficult topic of how to provide individualized, appropriate care for patients with advanced serious illness in a country that is grappling with out-of-control health care costs.
Patients should, and can, take control of the quality of their life through their entire life, choosing how they live and how they die
Its conclusion: The system needs a major overhaul.
"Our current system is broken," said David M. Walker, co-chair of the 21-member committee that authored the report and former U.S. Comptroller General from Bridgeport, Conn. "It does not result in the type of quality of care that people deserve and desire and it's much more costly. Systematic changes are needed for more compassionate, affordable care."
No easy solutions exist, the authors said at an hour-long press conference announcing the release of the report yesterday. Instead, they plan to spend the next year getting their message out to the public with far ranging goals for change: from more comprehensive coverage of palliative care by medical insurance, to more hours of palliative care education in medical and nursing schools, to improved communication between health care providers and their patients about their end-of-life care choices - along with a payer-system that reimburses for those conversations.
It's a controversial topic that broke out into the public debate five years ago during the passage of the Affordable Care Act, when opponents of the bill claimed that a proposal for Medicare to reimburse doctors for counseling patients about living wills and advance directives would lead to bureaucrats setting up "death panels" to determine who deserved care.
But it's also a topic that can no longer be ignored, authors of the report said. Too many Americans are suffering unnecessarily and as the elderly population continues to grow with the aging of the baby boom generation, these problems will continue to multiply.
"For most people, death does not come suddenly," said Philip Pizzo, MD, co-author of the report and former dean of Stanford's medical school, in an email to me discussing the conclusions of the report. "Instead, dying is a result of one or more diseases that must be managed carefully and compassionately over weeks, months, or even years, through many ups and downs."
Physicians and other health care professionals can provide well-rounded care at the end of life to relieve patient pain, maximize functioning, alleviating emotional stress, and ease the burden of loved ones - all in a manner that is consistent with individual choices, he said.
"Patients should, and can, take control of the quality of their life through their entire life, choosing how they live and how they die," Pizzo said.
But it's not happening today.
"Studies show that doctors want to die in comfort at home at the end of life, but subject patients to high-intensity ineffective treatments," he said. "Why?"
Previously: Study: Doctors would choose less aggressive end-of-life care for themselves, Former School of Medicine dean named to expert panel to reform end-of-life care in America, Communicating with terminally ill patients: A physician's perspective and On a mission to transform end-of-life care