In my junior year at the University of North Carolina at Chapel Hill, a team of four Health Policy and Management classmates and I set out to understand one statistic: 70 percent of Americans want to die at home, but only 25 percent actually do so.
Instead, many patients undergo repeated, minimally life-extending treatments that are personally dissatisfying, physically invasive, and mentally exhausting both for themselves and their family members. Patients often would rather be in the comfort of their homes and surrounded by loved ones in a peaceful atmosphere.
Why -- with a rapidly aging population and increased media attention on ethical and practical issues surrounding end of life care -- are we not taking a closer look at this disconnect? And what can be done to solve it? We interviewed physicians, hospice care providers, experts in aging and long-term care, and even organizers of "Death Cafes" (group-directed discussions about death hosted at cafes and coffee shops) to find answers.
We found that barriers to meeting patient preferences at the end of life are not limited to just doctors' education about how to have these conversations or patients not knowing what options are available to them. There are intense barriers in all spheres of patient care -- among patients, their families, and their physicians -- and larger structural issues in our health care system that crosscut all of these groups.
When asked, most patients say they will not ask about hospice or palliative care as options if the physician does not suggest them first. Many patients, family members, and doctors feel that asking about or recommending hospice, palliative, or supportive home care represents giving up hope. Some doctors have trouble timing referrals to hospice care, which require patients to be given a diagnosis of six months or less to live in order to receive insurance coverage for care. Conversations about end of life care are supposed to be added to already very short appointment times, and doctors do not get paid to have these conversations.
Leading up to passage of the Affordable Care Act (ACA) in 2010, a proposal was included that would have helped to make sure that patients' wishes were followed at the end of life. This included paying doctors for optional end-of-life planning conversations with patients and their families. It certainly would have helped to change the startling statistic above.
Unfortunately, this became severely misconstrued as government-sponsored "death panels" to convince Medicare beneficiaries to end their lives sooner. Some legislative leaders even asserted that the proposal created government-sponsored euthanasia. This incorrect information led to major public concern over the proposal, and it was not included in the ACA.
Recently, however, Dr. Patrick Conway, chief medical officer for Centers for Medicare and Medicaid Services (CMS), announced that the department is reconsidering paying doctors to have end-of-life planning conversations. In the last congressional session, Mark Warner (D-VA) introduced a bill to create a benefit for end of life planning for Medicare and Medicaid patients that will likely be reintroduced in the current session.
This is important not only for Medicare and Medicaid patients and their families who could benefit from advanced planning. It's important for all patients, regardless of insurance coverage, to have these options. Private plans that do not offer this benefit will almost surely do so if it is pursued by CMS (historically, private plans have mimicked the benefits provided by Medicare). Additionally, if providers are reimbursed, the subject is more likely to be added to medical education curricula to better prepare providers to have these conversations. Eventually it will become an expected part of a regular appointment for chronically or terminally ill patients, limiting the fear that patients and their families have about making their preferred care trajectories known.
We need to pay doctors to talk to us about how we want to die. With smart end of life care policies, it is not a stretch to imagine all 70 percent of Americans who want to die at home actually doing so. Chronically and terminally ill patients deserve the best care at the end of life, and at a minimum this means understanding their preferences.
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Cori Floyd, Jordan Hughes, Matthew Lee, and Shivani Garg of the University of North Carolina at Chapel Hill contributed research used in this piece.
For in-depth discussions of the issue, we suggest reading "Letting Go" by Atul Gawande and "How Not to Die" by Jonathan Rauch.