In his Nov. 15th post, Joe Gibes warned of how pay-for-performance—the coming standard for paying doctors and hospitals—creates an incentive for doctors unethically to refuse to treat the sickest patients. The week before, he rightly challenged my Nov. 8th post about futile care, warning that being too strict about a patient’s autonomy to dictate his end-of-life care could easily create a situation whereby his physicians could be considered obligated to provide ineffective treatments, essentially reducing the physician to the role of technician. I think Joe is right on both counts. But a bit more to say about this…
A neighbor of mine just lost his uncle to a long illness. I am told there was some tension among family members, because one in particular “wanted everything done” and had resorted to diagnosing the gravely ill uncle’s medical problems by applying her native intelligence to what she could find on the Internet. A debate about hospice referral was brewing, but the patient foreclosed the debate by passing from this life to the next.
Clearly, patients or surrogates acting as amateur physicians is uncalled for, and the physician’s calling requires affirming his knowledge and judgment, and educating patients and surrogates about proper medical standards. But these cases should not distract us from the possibility that pay-for-performance or some other construal of physician authority and/or resource constraints would create the sort of unethical incentive Joe worried about, when it comes to end-of-life decisions. This is what Wesley Smith has been writing about for years—“futile care theory” masquerading as cover for a “culture of death” in which patients’ ends are hastened by willful denial of indicated care. That denial can come in the form of a physician’s refusal to honor a patient’s wishes, or the fiat of a hospital ethics committee, or the insistence that the patient’s surrogates, not the physician or hospital, bear the burden of seeking a relevant court order. Smith writes, for example, about cases in which life support is removed against the wishes of a patient with capacity, in the name of “futility” and legal protocols that call for a patient desiring continued care, when physicians disagree, to seek transfer to another facility willing to provide the treatment, and possibly sticking the patient with the bill for the transfer.
Of course, such a scenario could arise under “pay for performance,” or other circumstances. Smith at times writes as if he thinks that any criteria of medical futility necessarily create this problem, and I’ve seen writings on the internet that seem to paint Dr. Pellegrino, of all people, with a similar brush. That, it seems to me, would be taking it too far. Some treatments are indeed ineffective. Even then, cost-effectiveness analysis will tend to broaden the definition of ineffective treatment. Against that, it seems to me the physician must start with a bias toward defending not only the patient’s best interests, but also the patient’s perspective. And the decisions whether a treatment is non-beneficial or disproportionately burdensome to the patient are made by the patient or his surrogate, from the patient’s perspective—not the doctor’s or the hospital’s or the “provider’s” or the health care budget invoked in the name of “society.” These matters call not just for wisdom, sensitivity, and communication, but also for vigilance, I think. We don’t want “autonomy gone wild,” but neither should we welcome “paternalism gone wild.”
[Note to readers: I will take next Thursday, Thanksgiving Day, off. Thank you for reading this blog, including my posts. I hope you will participate actively, by commenting (with civility, of course) as you see fit.]