ARTICLE IN BRIEF
Neurologists respond to a reversal in the Medicare policy to reimburse physicians' for time spent discussing end-of-life care options with patients.
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At the end of December, a new Medicare policy included a code that would allow doctors to be reimbursed for including end-of-life care discussions in the annual “wellness” office visit. It was supposed to take effect on Jan. 1. Days later, the references to end-of-life care were removed, and health care officials say it will not return to the bargaining table.
In interviews with Neurology Today, neurologists said they were disappointed in the reversal, noting that advance care issues are important albeit difficult points of discussion. Adding the specific code might have encouraged physicians to include advance care planning in their discussions and give patients a chance to discuss their wishes, they said.
“From a medical and ethical perspective this is very simple: Patients benefit when they can talk to their doctors about their wishes for the end of life,” said Michael A. Williams, MD, the medical director of the Berman Brain & Spine Institute at Sinai Hospital in Baltimore, who has written several articles on interdisciplinary training for end-of-life care.
“It doesn't make a difference whether they want to put limits on their care or if they say ‘I want you to do as much as possible.’”
“The conversation is important,” Dr. Williams said. “From the physician side, you can help them understand and clarify misunderstandings. For example, sometimes patients think that once they go on a ventilator or if they go into intensive care, they're stuck there forever and can't stop treatment. And some people think that if they have a living will, it means they won't receive any care. There is lots of confusion.”
The policy change was announced on Jan. 5, by White House Press Secretary Robert J. Gibbs, who said the provision was removed because there had not been open discussion about the section.
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“We did not think that the process in the rulemaking was what we wanted it to be in terms of having and giving the public an adequate space in a public comment period to debate these kind of things,” Gibbs said, in a news briefing. “That does not change, again, our support and others' support for these types of confidential discussions.”
‘DEATH PANELS’ REVISITED
There was some concern, doctors said, about the clause being misinterpreted as creating a “death panel” by some politicians — meaning that physicians would encourage patients to use fewer health care options and therefore die sooner to save money for the health care system.
“Most of us who are knowledgeable about advance directives believe that their criticism was a misrepresentation, and that the abandoned provision was intended to encourage physicians to have these types of conversations,” said James L. Bernat, MD, professor of neurology and medicine at Dartmouth-Hitchcock Medical Center, who studies ethical and philosophical issues in neurology.
“Nevertheless, because the entire health care bill's very existence now is being questioned and Republicans in the House of Representatives are going to try to have it reversed, as a political matter, I suspect that the Obama administration didn't want anything in the bill that could be plausibly attacked as a possible weakness,” said Dr. Bernat, who serves on the editorial advisory board of Neurology Today.
Jessica Santillo, a spokeswoman for the Department of Health and Human Services, said that there is nothing that prohibits doctors from discussing end-of-life care with their patients. It's just not on the menu of coverage services allowed for the annual “wellness” visit that is free for patients under Medicare.
“I don't think there are any plans at this time to amend the content in the near future,” Santillo said.
Howard I. Hurtig, MD, co-director of the Parkinson's Disease and Move-ment Disorders Center and professor ofneurology at the University of Pennsylvania in Philadelphia, said that it seemed foolish to take such a step back in policy.
Encouraging patients to create a living will and dictate their health wants at the end of their life opens the door to have the conversation with family members. It also gives health care providers a clear mandate for treating terminal illness, since many people tend to express the desire to forego aggressive medical interventions if the outcome is likely to be futile, Dr. Hurtig said.
Politicians “didn't have the political will or the backbone to stand up for something that makes perfect sense,” Dr. Hurtig said.
HOW TO HAVE ‘THE DISCUSSION’
All the neurologists interviewed said they already discuss advance care issues with their patients as part of a regular office visit. But they agreed that having the discussion wasn't easy — either for them or for the patients.
Dr. Hurtig said that he initiates a serious discussion on advance care options based on his clinical judgment of the patient's receptiveness of the idea. Asking about a living will is part of the standard intake form and, if not answered, the question gets flagged.
“One advantage we have at Penn is our research on human brain tissue through our Udall Parkinson's Research Center. Since our patients know that research is essential to finding causes of neurologic diseases as the gateway to developing new and innovative treatments, I always find the opportunity to discuss brain donation in the context of end-of-life decisions,” Dr. Hurtig said. “That opens up the discussion and importance of advance directives.”
Dr. Bernat said that even though he has been having these conversations as a doctor for decades, he still finds it uncomfortable. “It's uncomfortable to talk about, particularly if you're seeing a patient on a healthy revisit to say ‘Well, one of these days you're going to die,” he commented. “Patients often also feel uncomfortable discussing it so there are good reasons why neither physicians nor patients wish to have these conversations, and they're easy to put off.”
It's a time-consuming process, if done correctly, he said.
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If someone has a disease with a short-term prognosis, like amyotrophic lateral sclerosis, Dr. Bernat said will discuss end-of-life issues earlier; practice guidelines suggest doing so earlier because it makes it easier for both patients and family members as the disease progresses.
Dr. Williams, in Baltimore, includes a question about living wills and surrogate decision-makers on his standard patient questionnaire, and said he has never heard anyone complain about it. If someone doesn't have a living will, he will take the extra time to explain it.
“Sometimes I'll say to patients, ‘Some doctors are afraid to ask patients these questions,’ and they give me a funny look, as if to say ‘why would that be a problem?’” Dr. Williams said. “My patients say it's nice to have the opportunity to say what treatment they want and who they want to make decisions for them. I can't remember a patient who got upset at the question, regardless of their political views.”