If you were diagnosed with a terminal illness, how would you want to die? Do you know? Does your doctor?
These questions are at the heart of a new plan announced by Medicare on Wednesday to reimburse doctors for the conversations they have with patients about end-of-life choices. The plan, which is open to the public for comment for 60 days, is expected to take effect in January.
The proposed reimbursement for advance care planning is part of a suite of changes to the physician payment schedule proposed by the Centers for Medicare and Medicaid Services, or CMS, which, according to CMS administrator Andy Slavitt, is “building on the important work of Congress to shift the Medicare program toward a system that rewards physicians for providing high-quality care.”
“This is fantastic news,” said Dr. Tony Back, a clinical researcher at Fred Hutchinson Cancer Research Center and an oncologist who practices via the Hutch's patient-care arm, Seattle Cancer Care Alliance, who is considered a national expert on doctor-patient communication. “And it’s way overdue. What this means is that we are having a real dialogue about end-of-life care that goes beyond political hot buttons. Americans now have enough experience with the Affordable Care Act to realize that this particular issue is not about denying care to them or forcing them to have some kind of crazy treatment that they never asked for.
“This is about getting the kind of medical care you want at a pivotal time in your life,” he said.
Currently, most insurance companies do not cover discussions between terminal patients and doctors about end-of-life care, so these discussions often don’t happen.
As a result, dying patients may be subjected to a number of interventions that are not only painful, invasive and costly — think ventilators, feeding tubes, aggressive chemotherapy and an overwhelming financial burden for those left behind — but may not be in line with their wishes.
“Probably fewer than 30 percent of Americans are having these conversations with doctors,” said Back. Studies show that for many cancer patients, the subject doesn’t even come up until their health fails and they’re admitted to the hospital, he added.
“Most of the time, cancer patients have these discussions after they’re admitted for a complication they weren’t prepared for and they’re talking to a stranger,” he said. “The health care system has not created a way for them to have this discussion earlier.”
The new Medicare plan would allow for reimbursement for any and all face-to-face discussions regarding end-of-life care between doctors (or other qualified professionals) and patients and their caregivers. Patients will have an opportunity to weigh options before they become too sick to speak for themselves, deciding if they want to try to extend their life at all costs until the very end or receive only palliative treatment and die at home or in hospice care.
The need for advance care planning and end-of-life discussions between cancer patients and their doctors has long been a goal of the Hutchinson Institute for Cancer Outcomes Research, or HICOR, which aims to reduce the human and economic burden of cancer and improve outcomes for cancer patients.
Dr. Scott Ramsey, HICOR’s director, spoke last year on the need for a cultural shift away from the notion that pursuing aggressive chemotherapy at end of life — which can often cause suffering without prolonging life — is somehow admitting defeat.
“I think one of the biggest barriers is the sense among patients and the advocate community that palliative care is giving up,” he said. “They need to hear that this is not giving up. It’s focusing on quality of life and a better experience in this journey that they’re taking through cancer.”
Medicare’s decision paves the way for frequent nuanced discussions about end-of-life care and end-of-life choices. And since the federal program currently insures about 55 million older and disabled Americans, this decision should prompt private insurers to follow suit.
“If Medicare is saying to doctors, ‘We value your time talking to people about choices at end of life,’ other payers are going to say the same thing,” Back said.
Back added that he has already heard from a handful of patient advocate groups who are “thrilled” about the Medicare decision.
“This is absolutely a signal to patients and families that having a visit to the doctor to talk about these things so they can understand what they’re dealing with and voice their preferences is important,” he said. “It’s a symbolic gesture that Medicare thinks it’s a worthwhile discussion and that it’s an important part of your health care.”
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Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at firstname.lastname@example.org.