This post is a part of our Bioethics in the News series. For more information, click here.
By Leonard Fleck, PhD
In an essay in the New York Times (12/9/15) titled “Imagine a Medicare ‘Part Q’ for Quality at the End of Life,” Katy Butler tells the story of her father who suffered a devastating stroke at the age of 79. That was followed by additional strokes and vascular dementia that culminated in his death six and a half years later. She writes: “Ours is a story familiar to many families: shuttling my aged father to specialist after specialist, each focused on a single crumbling organ—his brain, his heart, his bladder, his colon, his eyes.” She goes on to write: “My father, and others like him, suffered because, at the tail end of life, Medicare continues to pay well for fix-it treatments focused unrealistically on cure and underpays for care and desperately needed home support.” Butler’s goal in writing this commentary is to advocate for a reversal of Medicare’s priorities: more emphasis on funding quality home care, quality primary care, and quality palliative care at the end of life rather than hospital-based or emergency room expensive, marginally effective life-prolonging but quality-of-life-diminishing curative efforts.
A similar story is told in another New York Times essay by Nina Bernstein (2014). She tells us about Mr. Joseph Andrey, 91 years old, beset with multiple chronic degenerative conditions, whose one wish was that he be allowed to die at home. The problem, however, was that multiple home care agencies refused to take him on as a home care patient because he was too complex a patient requiring too much care relative to the reimbursement they would receive from Medicare. Consequently, in the last two years of his life he endured multiple hospitalizations and nursing home placements that left him with a hospital-acquired sepsis and nursing home-acquired pressure sores. His daughter, who fought heroically to honor her father’s wishes, calculated that Medicare paid over a million dollars for “care” in the last two years of his life.
The story of Mr. Andrey is both sad and tragic. From a policy perspective we might think of him as an outlier, one of those rare anomalous cases that policies cannot accommodate. However, that would be a mistake. More than half of Medicare patients over age 85 have four or more incurable conditions, including what are described as “slowly fatal” conditions such as heart failure, emphysema, kidney failure, various advanced incurable cancers, and dementia. In 2014 roughly 6 million Medicare patients were over age 85. It strains the bounds of linguistic and ethical propriety to think of 3 million of these individuals as “outliers.”
I remind the reader that the major problem of health policy today is cost containment. Medicare is an inescapable focal point for that concern. In 2014 Medicare expenditures were about $640 billion. Over the ten-year period 2015-2024 projected Medicare expenditures are estimated to be $8.3 trillion. It is not as if all Medicare patients have extraordinary health needs. Rather, 5% of all Medicare patients account for 38% of total Medicare expenditures, roughly $256 billion in 2014 (National Institute for Health Care Management, 2012). If all those dollars were needed to address serious health needs, effectively restoring high quality life-years, a just society would have a presumptive ethical obligation to address those needs. But the stories of Mr. Andrey and Katy Butler’s father suggest that this is not often the case. Dr. Joanne Lynn, a veteran hospice physician, asks (no doubt in a frustrated tone of voice): “How can I get a $100,000 drug [for a terminal cancer patient] but I can’t get supper [for that same patient]?” She said that in the context of a federal budget sequestration that slashed spending on meals for seniors (Bernstein, 2014).
To return to Katy Butler, she is advocating for what she calls Medicare “Part Q” (for quality of life). Part Q would pay for a coordinated primary care team that would provide care in a patient’s home, what might be described as intense palliative and supportive care until that patient died. Such care would be provided for as long as two years prior to the death of a patient, most often with multiple slowly fatal medical conditions. To qualify for Medicare Part Q Butler says, “I would promise, upfront, to forgo medical treatments that evidence shows are outrageously expensive, not cost-effective, painful to endure, and likely to extend my life, if at all, by only months.” Medicare Part Q would be an option that patients would have to freely embrace. In spite of that qualification, it is easy to imagine death panel rhetoric being readily resurrected with the intent of scotching that option.
What we should note, however, is that under the Affordable Care Act the Obama Administration put in place three years ago a demonstration project under Medicare titled “Independent at Home.” About 8400 frail seniors with multiple chronic conditions are receiving customized home-based primary care, similar to what Katy Butler had in mind, except there is no requirement to forgo expensive and aggressive end of life care. Still, the goal of the program is to minimize use of emergency room and hospital services, thereby saving Medicare dollars. After one year the program has saved about $3100 per beneficiary.
I want to conclude with a provocative endorsement of Katy Butler’s Medicare Part Q. But I find it difficult to imagine what would motivate a substantial majority of Americans, likely within two years of dying, to forgo aggressive costly life-prolonging care (otherwise paid for by Medicare). Ms. Butler believes patients would vividly imagine the pain and suffering they could avoid for the sake of a dignified and peaceful death. But the sad reality is that most patients can imagine that pain and suffering but see it as something that can be endured for the sake of an indefinite gain in life expectancy, which is why so many cancer patients spend only the last week or two of their lives in hospice.
To correct for that distorted judgment I would offer a provocative addendum to Part Q, namely, that patients would receive 25% of whatever they saved the Medicare program. If they gave up a $100,000 cancer drug for their metastatic cancer, they would receive $25,000. Presumably another $25,000 or more of that savings would pay for intensive in-home palliative care and supportive social care. Physicians would have to be entrusted with responsibility for protecting the best medical interests of those patients, i.e., dissuading patients from inappropriately foregoing a necessary hospitalization that was congruent with a dignified dying process. Still, my critics might see this proposal as fundamentally ethically flawed, manipulating patients with a monetary offering so that they would give up some portion of their remaining life. But if medical research shows in some range of definable terminal circumstances that higher costs are associated with a worse quality of death, then that is ethically significant. Some research shows just that (See Zhang et al., 2009; De Jonge et al., 2014; Boling and Leff, 2014; Meier, 2015). If such economic incentives serve to nudge patients to make choices that are more congruent with their objective best interests near the end of life, and if those savings can be reallocated to higher priority (more just and more cost-effective) health care needs of the elderly, then this proposal deserves thoughtful consideration rather than rhetorical savaging.
For my physician readers I will conclude with this question: Would you be comfortable counseling patients likely in the last year of life regarding this option, i.e., being a bit more directive?
Leonard Fleck, PhD, is a Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Philosophy at Michigan State University. Dr. Fleck is the author of Just Caring: Health Care Rationing and Democratic Deliberation (Oxford University Press; 2009).
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