AMA Journal of Ethics^®

Case

Dr. Rossi, an orthopedic surgeon, was recently selected to be a voting member of one of the FutuRx Health Maintenance Organization’s (HMO) committees, which is solely responsible for determining covered and excluded services for the various FutuRx HMO plans.

The focus of one of the committee meetings was exclusionary criteria for coverage of replacement arthroplasty. During this meeting, a committee member proposed an absolute cutoff age of 90 for the surgery, according to the rationale that, given the median lifespan of the US adult population, a 90-year old person would not live long enough after the surgery to justify the expense. Proponents of the proposal argued that the cost savings from this exclusion could be shifted towards lower premiums and more comprehensive coverage for others. This particular proposal resulted in a lively discussion among the committee members. There were many valid points raised for and against this proposal, but all Dr. Rossi could think of was his patient, Mr. Turner.

Mr. Turner is 91 years old and a former Olympic marathon runner. He has been seeing Dr. Rossi for his severe right-knee osteoarthritis but is otherwise in excellent health. Even though Mr. Turner continues to enjoy an active life, over the past 6-9 months, the knee pain has limited his ability to do what he loves most, run. Mr. Turner ran his last full marathon 1 year ago and, even with his severe osteoarthritis and advanced age, was able to complete it in less than 4 hours and 45 minutes. Since then, due to his knee pain, Mr. Turner has had to decrease the frequency and the intensity of his runs and more recently has been unable to run at all. Dr. Rossi remembers his multiple conversations with Mr. Turner about how much running means to him and how much enjoyment he gains from this particular activity. Dr. Rossi was considering a knee replacement for Mr. Turner and, even though proposed changes will not affect Mr. Turner directly (he is not part of FutuRx HMO) Dr. Rossi feels uneasy voting for a change that would restrict patients like Mr. Turner from getting a procedure that, in some circumstances, has a high potential for increasing quality of life. On the other hand, Dr. Rossi appreciates the value of limited health care dollars, the larger impact of such cost-saving approaches, and the biological limit on the years of benefit patients like Mr. Turner would gain from undergoing joint replacement.

Commentary 2

Given the strain that health care costs have placed on the US economy, there has been renewed attention on exclusionary criteria for coverage of various procedures and services. Age is an obvious, albeit controversial, independent exclusionary criterion to explore. This case poses the question of a knee replacement for a 91-year-old marathon runner. This is not a common occurrence; the majority of health care spending is for patients who are in their final year of life, and often in their last couple of months. For example, one of us took care of John, a 91-year-old man with a massive ruptured abdominal aortic aneurysm and multiple comorbidities who was rushed by ambulance to the hospital. At his family’s request, John underwent surgical repair and was subsequently transferred to the ICU where he remained persistently unconscious on a ventilator with an abdomen full of blood, only to die two weeks later despite continued rescue efforts costing tens of thousands of dollars.

John’s familiar story illustrates how health care resources are consumed by intensive rescue efforts at the end of life. From 1960 to 2000, the individual rate of health care spending on those aged 65 and older increased over twice as much as spending on the general population, yet the incremental cost per year of life gained at 65 was four times greater than the incremental cost per year of life gained at birth [1]. In other words, in the last 40 years the United States has spent proportionately more money per capita on the elderly with proportionately less return for that investment. Indeed, the financial solvency of the United States (and other developed nations) requires that we identify and confront the source of these problems [2, 3].

One source is the expectation that science and technology will eventually triumph over sickness and death. Since at least the time of Francis Bacon (1561-1626), medical practitioners and patients have acted on the hope that, if given enough time, science could one day eliminate disease and suffering [4]. The fabulous success of this “Baconian project” is undeniable. Medical technology has increased the number and quality of the years we live. Patient and practitioner alike have become more resolute that the powers of medical science and technology have no limit, and some scientists reinforce this expectation by arguing that it is only a matter of time before death becomes optional.

This prediction of a technological utopia is often dismissed as science fiction, but the fiction is compelling nonetheless. We struggle to know when or how to limit technology as death approaches because the fiction of an optional death lulls us into believing that we can delay the inevitable. Yet death remains an absolute and unavoidable limit. As Atul Gawande notes, “Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop” [5].

The tension between medicine’s utopian promise and its limited resources is made apparent by the necessity of health care rationing. Ability to pay remains the de facto criteria for rationing in the United States, and such rationing happens every day, though most Americans don’t recognize it as such. Well-intentioned attempts to develop more equitable criteria for rationing typically falter because rationing done by someone to someone else elicits fear of tyranny, such as the false reports of “death panels” in the Affordable Care Act of 2010 [6]. However, ethicist Daniel Callahan points to an alternative approach to rationing that may be more constructive. He exhorts the profession to help people “live out a full and natural life span, not simply more life without discernible end” [7].

Wendell Berry offers a vivid example of what this kind of health care rationing might look like in his novel Hannah Coulter [8]. Hannah’s husband, Nathan, returns from World War II to the township of Port Williams, Kentucky, where he takes up farming just as his father and grandfather did before him. Together, Nathan and Hannah care for the land entrusted to them, and from their faithful stewardship grows a bountiful life that is well-lived, full of hard work, and embedded in a community of friends and family who love their land and each other. But in the end Nathan falls sick, very sick. He isn’t a “doctor-going” type of man, so his family has to beg him to see the specialist in Louisville who diagnoses advanced cancer with poor prognosis. Not knowing what else to say or do, the specialist recommends intensive therapy. “It was a story we all knew,” reflects Hannah, “one that has been lived and told too many times in Port William, a bad story” [9]. But rather than scheduling chemotherapy, Nathan stands up, shakes the doctor’s hand, thanks him for his time, and walks out.

Nathan has known he is dying for quite some time, but Hannah needs time to adjust. “Well, what are you planning to do? Just die? Or what?” cries Hannah. “Dear Hannah,” Nathan replies, “I’m going to live right on. Dying is none of my business. Dying will have to take care of itself” [10]. Over time Hannah begins to understand: “He wanted to die at home. He didn’t want to be going someplace all the time for the sake of a hopeless hope. He wanted to die as himself out of his own life. He didn’t want his death to be the end of a technological process.” So Nathan goes on living at the farm with his family and community around him until the end. “He was not false or greedy. When the time came to go, he went” [10].

Nathan’s approach to health care rationing among the elderly avoids the tyranny of “death panels” because Nathan chooses it for himself, even to the pain of his wife, Hannah. The source of his empowerment is not rooted in “autonomy,” but in a thick understanding of a life well-lived. Nathan has accepted death long before it comes. And when it does come, it is the fitting and proper end to the narrative of his life. He goes on living and leaves death to take care of itself.

Most clinicians probably have experience with patients like Nathan, but the story of John’s death at the beginning of this essay is more typical. Any approach to rationing that addresses the false promises of utopian medicine peaceably will require discourse within medicine and society that produces more Nathans and fewer Johns. How this might transpire is not clear, but at the least it will require scrutiny of the entire system we have created [11]. Rather than running yet another randomized controlled trial to test the incremental increase in effectiveness of the newest lipid-lowering agent or retrospective study to ascertain the maximally cost-efficient mode of health care delivery, we might rather invest in understanding how medicine might support thicker descriptions of what it means to live well. And most importantly, we need an understanding of how a good death fits within the narrative of a life well-lived.

Whether medicine will be able to recover a substantive language for public discourse on what it means to die well remains to be seen. Callahan points out that:

the greatest obstacle may be our almost utter inability to find a meaningful place in public discourse for suffering and decline in life…we have created a way of life that can only leave serious questions of limits, finitude, the proper ends of human life, of evil and suffering, in the realm of the private self or of religion; they are thus treated as incorrigibly subjective or merely pietistic [12].

While it would be great if we could build consensus about the proper ends of human life and the scope of medical technology from universally persuasive principles, that utopian ideal is just as much of a fiction as “optional death.” But the stakes are too high to kick the can called “rationing” down the road for another generation. The available resources for the necessary conversation may be subjective, but they are the only resources at hand [13]. Perhaps our meager subjectivities and pieties may be sufficient to begin the necessary conversations in our homes, communities, schools, hospitals, and businesses—conversations that might lead more people to know themselves and the limits of medicine like Nathan Coulter who rationed his own medicine so that he could keep on living until it was time for him to go.