‘Dying in America’ report calls for overhaul of end-of-life care

The U.S. needs to overhaul a system of end-of-life care, which rewards doctors for delaying hospice admissions and performing unnecessary procedures, according to a committee of medical and bioethics experts, who say that conversations about death should start as early as the age of 18.

“As a nation, we are really quite poorly equipped to address the quality of both life and end of life,” said Dr. Philip Pizzo, a microbiology and immunology professor at the Stanford University School of Medicine who co-chaired the committee, which was convened by the influential Institute of Medicine (IOM), an independent health research organization at the National Academies.

The IOM committee spent two years examining end-of-life care in the U.S., and released its recommendations last week in a 500-page document, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” which serves as an update to a 1997 report on the subject, largely credited with bringing hospice care into the mainstream.

Among the recommendations are that patients should be encouraged to make their wishes known to their primary care doctors and that end-of-life treatment should be focused less on hospitals and more on hospice or home-based care, which is what most patients say they want.

The committee also recommends that all patients with public or private health insurance should have access to palliative care, a relatively new, interdisciplinary approach to treating serious illnesses that centers on managing symptoms and focusing on quality of life, based on a patient’s values and wishes, the IOM said.

That runs in opposition to the way American medicine works, with its fee-per-service payment system that creates incentives for doctors to offer too many treatments, even if the patient doesn’t benefit from or want them, Pizzo said.

“There needs to be a lot more discussion about end of life, along with overall quality of life as well as quality of death,” said Pizzo, who, as a pediatric oncologist has treated many young people who are facing death. “This is a discussion that should happen as part of a life cycle, and the beginnings of those conversations should occur at important milestones of life,” such as when a person gets married, has children, gets a driver’s license or forges a new career path.

The IOM’s new report was largely inspired by the “death panels” conversation that arose in 2009 when a provision of an early version of the Affordable Care Act called for doctors to be reimbursed when they talked about end-of-life care with their Medicare patients.

That provision was eventually withdrawn because of the misconception that it would somehow result in euthanasia, or doctors making end-of-life decisions on behalf of their patients.

But as the IOM committee pointed out in the report, the issue of needing to deal with death did not go away. “At a time when public leaders hesitate to speak on a subject that is profoundly consequential for the health and well-being of all Americans, it is incumbent on others to examine the facts dispassionately, assess what can be done to make those final days better and promote a reasoned and respectful public discourse on the subject,” the authors wrote.

Palliative care, a central tenet of the IOM’s report, grew out of the hospice care movement of the 1960s and 1970s, which centered on treating terminally ill patients according to their wishes, often in their homes, with their families present.

This philosophy can mean avoiding expensive treatments or time in intensive care units when patients don’t want it and won’t benefit from it.

A 2010 study in New England Journal of Medicine study showed that, among people being treated for incurable lung cancer at Massachusetts General Hospital, those who received palliative care lived for two and a half months longer than those who didn’t and reported less nausea, pain and symptoms of depression.

And a 2011 study from the Mount Sinai School of Medicine and the University of Rochester found that Medicaid patients who received palliative care at New York state hospitals racked up, on average, $6,900 less in hospital costs than a group of similar patients who didn’t.

“It would really behoove us to sit up and pay attention to how palliative care could really make a lot of difference for a lot of people,” said Dr. Kathy Neely, a professor at Northwestern Memorial Hospital in Chicago and chair of the medical ethics committee there.

As such, the IOM report recommends changing the payment systems that reward doctors for performing more procedures, delaying patients from getting into hospice care and diminishing quality of life.

While Medicaid now covers hospice care for patients in the last six months of life, it doesn’t reimburse doctors for having conversations about end-of-life care.

The report also recommends integrating palliative care into medical and nursing curriculums. Learning how to have those difficult conversations is something that is sorely lacking in the medical field, according to Dr. Steven Pantilat, a professor at the UCSF School of Medicine and the founding director of the UCSF palliative care program.

Doctors, he said, are uncomfortable having to telling patients that they have incurable cancer, for example, and don't want to have to say, “I wish we could make the cancer go away, but we can’t,” he said. “But we can do something to make the pain go away and make you feel better.”

Palliative care, he says, focuses on treating the whole person rather than simply the illness alone — and those are skills that every primary caregiver should have.

“It’s not just a tumor. It’s not just a heart that’s failing. It’s a person who’s experiencing the illness,” Pantilat said. “It’s recognition that there can be healing even when there’s not a cure.”