An interview with the authorsPublished May 2013
Why is Medicare So Expensive: Episode V
The Role of 'Never Say Die'
By Abdul El-Sayed
Published on October 30th, 2012
At $509 billion in 2010, Medicare spending accounted for 12 percent of the federal budget. In episodes 1-4 of this series, The Project explored four trends that are contributing to the unsustainably high costs of Medicare. We considered, first, the influence of the growing, aging population of older adults. We then discussed the growing prevalence of obesity, diabetes, and dementia among today’s elderly and the role of the changing health status of older adults with respect to the cost of Medicare. From there, the conversation turned to the role of medical technologies and the costs they bring to bear on health services for our nation’s elderly.
In this, the fifth and final installment in our five-part series on Medicare costs, we explore the role of the awkward relationship Americans have with death and dying, and how it’s contributing to Medicare’s explosive growth.
First, the facts: In 2009, Medicare spent $50 Billion on patients in their last two months of life for doctors’ fees and hospital bills alone. That’s more than the entire budget of both the Department of Homeland Security and the Department of Education. In fact, 25 percent of Medicare costs are spent on care for beneficiaries in their last year of life—and 40 percent of that is spent caring for those in their last month.
It’s clear that end-of-life costs account for a disproportionate percentage of Medicare costs. But does all of this money improve the quality of care older Americans receive?
It may actually make it worse: A highly-cited study by researchers at Dartmouth demonstrated that while the variation across hospitals in the costs of care at the end of life can be severe—from $53,000 to $94,000 between 2001-2005 at two of the nation’s top hospitals—quality of care across several measures were worse in more expensive hospitals. More expensive hospitals had higher mortality across many of the most important causes of death in the elderly, lower adherence to process guidelines, and poorer physician-patient communication.
So it seems that the most expensive care isn’t necessarily the best care within the U.S.—but how does the American end-of-life experience stack up internationally? To answer this question, investigators at the Economist developed a “Quality of Death Index,” which measures countries on their basic end-of-life healthcare environment, as well as the availability, quality, and cost of end-of-life care. Among 30 high-income countries and 10 middle and low-income countries, the U.S. ranked a measly 9th place. Why? Ours were the highest end-of-life care costs of all high-income countries, ranking 31st out of 40 on that axis overall.
What drives our astoundingly high end-of-life costs? Americans have an uncomfortable relationship with death and dying.
Nearly 70 percent of Americans say they would rather die at home than in a hospital, and more than 80 percent of chronic diseases patients say they’d rather avoid being hospitalized or being admitted to intensive care near death. But the reality is that nearly 50 percent of Americans die in hospitals—the vast majority of them with chronic diseases.
How do we explain the difference between what most Americans want and what they end up getting?
Most experts agree that palliative and hospice care are a key component of easing the burden of end-of-life healthcare costs. As providers focus on comfort and easing symptoms rather than on attempting to cure disease, these services lower the costs of end-of-life care. Perhaps more importantly, palliative approaches improve patient comfort at the end-of-life, often allowing people to die in the comfort of their own homes, rather than in the impersonal hustle and bustle of the hospital. One randomized trial, for example, demonstrated that in-home palliative care services lowered patient costs, improved patient satisfaction, and resulted in fewer in-hospital deaths as compared to standard approaches to end-of-life care.
It seems that given the improvements in comfort and care, most Americans would choose hospice or palliative care to in-hospital death. But many Americans don’t make their own end-of-life decisions—these decisions are often left to their next-of-kin. Herein lies much of the problem: many Americans view placing their loved-ones in palliative or hospice care as “giving up” on them because of the implicit logic that doctors will no longer try to “save” them. Often ignoring the wishes of those whose care decisions they are making, a sense of guilt and shame on the part of children or grandchildren drives a “never say die” attitude—often wracking their dying loved ones through reams of unhelpful, hail Mary treatments, while piling up the costs.
Similarly, this never-say-die non-approach to death and dying can allay meaningful conversations about death between the dying, their loved-ones, and their care providers. This is unfortunate, because end-of-life discussions between patients and their providers can lower healthcare costs by a third, on average, as a recent study of cancer patients demonstrated.
Much of our national uneasiness with death bears out in the public conversation about it, too. For example, the “death panel” moniker slapped on attempts to standardize end-of-life care with the Affordable Care Act reflects that collective discomfort. These types of polarizing labels preclude any productive conversation about death at the national level by turning the issue into a political hot potato. Worse still, they perpetuate the stereotype that making the decision to come to terms with the impending death of a loved one is tantamount to “giving up.”
Addressing this issue is at the heart of our Medicare troubles—in many ways, our national support for the Medicare program hinges on wanting to provide quality care for our elderly as they approach death. At the same time, however, we are unwilling to deal with the reality that the elderly are, by definition, approaching death. This paradox poses a fundamental challenge to the efficiency and sustainability of the program.
Unfortunately, in the end, there is death. We’ll all experience it, as will our loved ones. Our inability to deal with this reality has the potential, by inflating the costs of Medicare to an unsustainable degree, to hasten uncomfortable deaths for many of our elderly in generations to come by destroying Medicare altogether.
And that’s an end-of-life conversation we hope we’ll never be forced to have.