Rational Rationing vs. Irrational Rationing: The Struggle for the Legacy of Ruben Betancourt

Are there circumstances in which patient autonomy, as expressed through surrogates, should be overruled in the name of resource allocation and/or sound medical practice?
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President Obama's nomination of the bold and brilliant pediatrician Donald Berwick, a leading proponent of an "eyes open" approach to the allocation of healthcare resources, to be Administrator of the Centers for Medicare & Medicaid Services, strongly suggests that our medical system may soon welcome a new era of rational healthcare rationing. Although far less attention has been paid to the ongoing New Jersey court case surrounding the death of Ruben Betancourt, an anticipated ruling by that state's Superior Court -- which could come at any moment -- has the potential to apply a similar form of rational rationing to end-of-life decision-making in cases of medical futility.

The facts underlying the case are indisputably tragic. In 2008, Betancourt underwent cancer surgery at Trinitas Regional Medical Center, a Roman Catholic hospital in Elizabeth, and later suffered an irreversible anoxic brain injury when his breathing tube became displaced. By 2009, the seventy-two year old was unconscious, kept alive by a ventilator, artificial kidneys and tube feeds. Infected ulcers covered his body. Unfortunately, the patient left no advance directive stating what he wanted done under such circumstances. The team of physicians treating Betancourt determined that he was in a vegetative state and, reportedly in consultation with the hospital's ethics committee, sought to forgo extraordinary forms of therapy, such as dialysis and cardiopulmonary resuscitation. Betancourt's daughter, Jacqueline, who rejected the medical team's view that providing such treatment to her father was merely prolonging the dying process, then obtained a court order for additional care. While the hospital appealed on the grounds that continued interventions were both medically inappropriate and unethical, Betancourt died. However, as the questions raised by this tragedy are likely to arise again in other end-of-life cases, New Jersey's Superior Court is expected to issue an opinion in Betancourt v. Trinitas that will clarify whether physicians and hospitals may refrain from providing costly care that they believe to be unconscionable.

As a general principle, one of the most widely accepted tenets of medical ethics is that patients may make their own treatment decisions -- including under what circumstances to withdraw life support. In cases where patients have not specified their wishes in advance, every state except Missouri allows surviving family members to serve as surrogates. Most mainstream ethicists, both liberal and conservative, support such patient autonomy. They differ as to what should be done if the patient has left no advance directive or surviving relatives -- in which case many progressive bioethicists, myself included, favor letting physicians make the choice to terminate care on behalf of incompetent or incapacitated individual. Yet this is clearly not such a situation. Here, Betancourt's surviving relatives want care to continue at all costs. In essence, this case is the reverse of battles like those surrounding Karen Ann Quinlan and Terri Schiavo, because here the next of kin favors extraordinary care, while the medical providers oppose it. What this case asks is: Are there circumstances in which patient autonomy, as expressed through surrogates, should be overruled in the name of resource allocation and/or sound medical practice? If such rare circumstances ever exist -- and I believe that they do -- then Betancourt v. Trinitas offers an excellent vehicle for the courts to clarify the circumstances under which hospitals may override patients and families.

Many advocates of futile care theory argue that what should matter, in cases such as this, is whether Betancourt was actually dying. To my thinking, this is a red herring. A better question would be to ask whether a strong medical consensus existed that Betancourt was in a permanent and irreversible vegetative state. If so, in a nation of finite healthcare resources, society would be acting reasonably to limit additional medical expenses on his care, even if he wished otherwise. Of course, if Betancourt's family were willing to pay for his care out of pocket, and could find physicians willing to treat him, I would have no objection to their preserving his body in such a state indefinitely. In fact, as I have written in regard to the Jesse Koochin case in Utah, I would have no problem with the family keeping his corpse in their home forever -- as long as they could do so in a manner that did not create public health risks.

There is a fundamental difference, however, between asking to be permitted to keep a vegetative relative on costly machinery, and asking the taxpayers or society as a whole to pay for such machinery. Money spent on vegetative patients is money not spent on preventive care, such as flu shots and mammograms. Each night in an ICU bed for such patients is a night that another patient with a genuine prognosis for recovery is denied such high-end care. Every dollar exhausted on patients who will never wake up again is a dollar not devoted to finding a cure for cancer. While the visible victims may draw the headlines and attract indignant protests from so-called "pro-life" organizations, the invisible victims are people like you and me who will suffer from diseases that are never cured because funds are being poured down a healthcare sieve in order to maintain permanently-unconscious bodies on complex and costly forms of life support. I suspect that the vast majority of people, not knowing in advance whether they will either end up in a permanently vegetative state or be diagnosed with cancer, would prefer that any resources that would be spent on PVS care be reallocated to cancer research -- or some similar enterprise that has the potential to help human beings who might actually recover.

The stark reality is that modern end-of-life ethics are on a collision course with themselves. As technology enables people to remain "alive" on ever more complex equipment, such as bilateral ventricular assist devices and extra-corporeal membrane oxygenation machines, the line between life and death blurs. Soon enough, a patient may be able to remain on such apparatuses for many months, long after meaningful brain function has ceased, until his skin and tissue begins to putrefy. When does such an existence transcend the barrier between living and dead?

Those who favor funding unlimited care for PVS patients tend to view the difference between these cases and other severe illnesses as a matter of degree. As a result, they worry about a slippery slope that might ultimately result in our pulling the plug on the cognitively intact but disabled. Yet PVS patients should instead be viewed as different in kind from other medical cases. In essence, the Betancourt court can decide that physicians and taxpayers only have a duty to provide unlimited care to patients who have a meaningful chance of returning to consciousness. Let us make no mistake about what this would mean: It would mean declaring that the lives of PVS patients are worth less than those of others. Rather than shying away from this outcome, progressive bioethicists should have the courage to acknowledge and to embrace this proposition.

Of course, I do not believe that we should take life-and-death matters lightly. I relish my life as much as the next person. In an ideal world, Ruben Betancourt never would have become ill in the first place. The good news is that, in our lifetimes, we may be able to vastly expand human life expectancies. And someday in the future, although possibly too late for anybody reading this column, we may be able to breed acephalic "shell" bodies into which to transplant human brains, or we may reprogram the ends of telomeres, or we may master some other transhumanist technology that permanently forestalls natural death and allows for eternal life right here on earth. Alas, immortality remains a distant prospect. In the interim, we have no choice but to allocate scarce healthcare dollars in such a way that some lives will be preserved at the expense of others. Those choices are not easy, but they are unavoidable. Once one accepts that premise, and anyone who claims otherwise does not understand basic economics, then a system that favors research and prevention over life support for patients in long-term vegetative states is not only the most reasonable choice, but also the most ethical one.

The specifics of the Betancourt case are complex and challenging. While the usual fringe groups, such as Not Dead Yet, have advocated for the family's position, so have mainstream scholars like futility law expert Thaddeus Mason Pope of Widener University. The hospital apparently did not involve outside experts to evaluate Mr. Betancourt's medical condition, which would certainly seem indicated when matters of life and death are at stake. But the particular details of this unfortunate patient's impairment are of less concern now that he is dead. Far more important is that the court establish clear guidelines for future cases. A courageous decision would ensure a mechanism for determining a patient's condition and prognosis, including such safeguards as an independent second opinion, and would then rule that hospitals do not owe unlimited care to PVS patients. If that freed up money to help other patients in need, or to cure diseases that threaten future victims, it would be a fitting tribute to the memory of Ruben Betancourt.

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