The Elephant in the Room: Incentivizing Discussions About Death and Dying

Towards the end of his life, my grandfather mused openly about his death. His brilliant mind and quick wit had mercifully stayed sharp as he aged, but as his physical health steadily deteriorated, he was haunted by the specter of his mother’s struggle with Alzheimer’s. After contracting the disease in her early 80s, she died an agonizingly slow death, clinging to life until she was past 100. For the last decade, when my grandfather made the twelve-hour trek to Montreal to visit her, she could do little more than lie in bed and stare past him without even a fleeting hint of recognition.

My grandfather feared beyond all else this gradual, numbing descent that afflicts those with neurodegenerative disease, and gave my family strict orders not to allow medical interventions that would prolong his life without preserving his cognitive capacity. When the time came, there was to be no doubt or dissent. He wanted to pass on with his mind and legacy intact.

We were lucky to have these conversations with my grandfather before he passed away, but many families are not so fortunate. Recent research by the Kaiser Family Foundation found that although nine in ten American adults believe that doctors should have end-of-life conversations with their patients, only 17 percent of them have actually had such a conversation with a medical provider. At a stage of life that requires clarity, foresight, and compassionate care, patients and their families are often left to make snap decisions about issues of life and death without the benefit of prior planning.

Congress and the Centers for Medicaid and Medicare Service (CMS) took steps to rectify this problem earlier this year. Neatly sidestepping the political maelstrom that engulfed the issue in 2009 when Sarah Palin derided similar legislation as containing “death panels,” Congress passed the Care Planning Act of 2015, a bipartisan bill that was enacted with little fanfare.

The new provisions authorized under the bill allow physicians to bill Medicare for “advanced care planning services,” which include helping patients complete advanced directives and conversing with them about end-of-life care. For the one in ten who would rather not have these conversations with a physician, the bill explicitly enumerates the patient’s right to refuse the service. By carving out a space in between libertarianism and mandatory intervention, the bill preserves patient sovereignty over a deeply personal choice while providing financial incentive for physicians to move in the direction that most patients prefer.

While this measure is a step in the right direction, it doesn’t go far enough.

Although physicians and nonphysician providers (NPPs) can now bill repeatedly for these services, the compensation Medicare is offering may not be sufficient to really get the ball rolling. Money talks, and the financial reality is that the $85 physicians are now being offered for these ninety-minute consultations still pales in comparison to the numerous more lucrative procedures they could be performing in that time. If it really wants to incentivize these valuable discussions, CMS must consider dramatically upping the rate at which it compensates physicians for them.

For better or for worse, Medicare has an inextricable relationship to the administrative oversight of death in this country. Eighty percent of people who die in any given year are on Medicare at the time of their death, and 25 percent of all Medicare spending nationwide goes towards patients in their final year of life. Failure to adequately plan in advance for end-of-life care can result in tens of thousands of dollars spent on therapies that a patient may never have authorized if consulted in advance. Multiply that out over the entire expanse of the medical bureaucracy and you’re left with tens of millions of dollars that can be saved if Medicare is willing to invest up-front to forestall life-prolonging procedures that go against the articulated wishes of its beneficiaries.

These savings could be critical to pitching the expansion of this program to the incoming Trump administration. Although president-elect Trump’s fiery rhetoric on government involvement in healthcare has health officials fearing the worst, the expansion’s potential savings could allow the administration to stake out a position that pleases both medical ethicists and congressional budget hawks.

If enacted hand in hand with both more clearly defined guidelines for what should be discussed during these sessions and an increased focus on training medical students and doctors to have these discussions, expansions to the Care Planning Act of 2015 have the potential to further change for the better the way we deal with death in this country. While the ethical imperative to respect the fundamental dignity and rights of all patients should unquestionably undergird any just medical decision making process, such actions may also provide a financial benefit, and a bipartisan olive branch, for a payment system that could desperately use it.

—Derek Fine