Attitudes on end-of-life care are naturally deeply personal. But the truth is many people don't have much say in the matter because they don't appropriately plan for it. When the federal Agency for Healthcare Research and Quality studied the issue about a decade ago, it found that medical records for more than half of severely or terminally ill patients didn't include an "advance directive" with instructions for care if they became incapacitated. Strikingly, just 12 percent of patients with an advance directive said they had actually consulted with a doctor when they formed it.
And that's where health-reform legislation being debated by Congress five years ago could have helped filled the gap. The draft of the bill that became the Affordable Care Act included a proposal to reimburse doctors for talking with the Medicare patients about advanced directives and end-of-life care. Then Sarah Palin help torpedo the idea in an infamous Facebook post that dubbed the provision a death panel.
The Palin-perpetuated controversy earned PolitiFact's top lie of 2009, but it was also the kiss of death for the provision, which was stripped from the legislation before its passage. The Medicare agency later tried to quietly enact it through regulation in late 2010, but it reversed course shortly after the plan became public — a recognition that the politics were still too sensitive.
Now in a new 507-page IOM report, medical experts have outlined comprehensive recommendations for tackling an issue that's only getting more pressing as 10,000 baby boomers join Medicare every day.
Recommendations include what the original ACA legislation would have done: pay doctors for speaking with their patients about end-of-life care. The report said reimbursement should be tied to standards for such conversations developed by professional societies.
The IOM panel offers up other recommendations: better training in palliative care for all doctors treating patients with advanced serious illness; comprehensive and coordinated care for patients nearing the end of life; and realigning financial incentives for medical care that decrease the use of expensive and unnecessary medical services that don't actually match up with what the patient wants.
There is also a major financial interest here, as uncomfortable as it is to discuss that part. Of the $554 billion Medicare spent in 2011, about 28 percent of that ($170 billion) was during patients' last six months of life, according to Medicare Newsgroup. Though the IOM report says numbers like these alone don't indicate whether care was excessive or unnecessary, it says there is likely money to be saved from better planning for end-of-life care.
"Because most people who participate in effective advance care planning choose maximizing independence and quality of life over living longer, advance care planning can potentially save health care costs associated with unnecessary and unwanted intervention," the IOM writes.
Talking about end-of-life care in such stark dollars-and-cents terms can be uncomfortable, and it could raise fears of rationed health care. The more important question is whether patients near the end of their lives are getting the care that they actually want, and the evidence suggests otherwise, the report finds.
"[E]vidence suggests a mismatch between the services most readily available to people near the end of life (acute care) and what they most often say they want (supportive services)," the report reads.
The IOM's final recommendation acknowledges the need for better public engagement on this topic, through media, clergy, doctors and others. The IOM said there also needs to be a better understanding of what messages work for different audiences, who will hold deeply different views on end-of-life care.
Adding to the challenge: five years after the death panel talk started, the myth lives on. As the New York Times pointed out last week, about one-third of people still believe the government ultimately will decide who's worthy of living and dying.
The IOM panel nods to the political sensitivity of the issue throughout its report. "The controversy on this topic and the political desire to avoid it do not alter the fact that every person will face the end of life one day, and many have had hard experience with the final days of a parent, a spouse, a child, a sibling, another relative, or a dear friend," the report preface reads. Interestingly, the report itself was supported by a "public-spirited donor" who wanted to remain anonymous.
Perhaps the politics surrounding death five years are changing, though. The ACA itself isn't the political story that it used to be. And Medicare is weighing a proposal from the American Medical Association, the country's largest physician lobby, to create billing codes for holding these end-of-life conversations.
The environment may finally be right for this topic. And the report Wednesday indicates that some people aren't willing to give up on it yet.