The May 2nd issue of the New England Journal of Medicine contains a very timely and well done piece by Dr. Howard Brody entitled “From an Ethics of Rationing to an Ethics of Waste Avoidance”. While the piece is wide-ranging a central premise is, “The two principal ethical arguments for waste avoidance are first, that we should not deprive any patient of useful medical services, even if they're expensive, so long as money is being wasted on useless interventions, and second, that useless tests and treatments cause harm.”
While I can support this conclusion as a matter of policy, as a chaplain who gets involved in the issues of individual patients and not the overall policy, I think the issues are often more complex. Dr. Brody recognizes one of these complexities when he says, “Few tests and treatments are futile across the board; most help a few patients and become wasteful when applied beyond that population. But the boundary between wise and wasteful application will often be fuzzy.” He advocates for an appeal process. However, even in that process, what do we do when the evidence as to whether a certain treatment will help a certain patient is inconclusive- as it often is?
The issue is further complicated by the current emphasis on “patient-centered care” where patient preferences get significant (some would say almost absolute) deference. How does this philosophy of care play out in this decision making process in which some think that patient preference is the trump card?
While I am a firm believer in patient-centered care, at the bedside, I don’t believe that this means “give the patient whatever they want without question”. We each need to think about our own goals for patients and families. As a chaplain, I would argue that my major goal is to help reduce suffering- defined very broadly. Thus it would seem to be my responsibility to let the patient and family know when I think they are going down a road that will lead to more suffering and to at least offer them alternatives that might reduce suffering. To be clear, I mean here suffering as defined by the patient. Thus patients who do not want pain medicine at end of life in order to be able to make the prayers prescribed by their faith should be allowed that option because their overall suffering is reduced. On the other hand, I would be much more aggressive in dissuading a family from continuing attempts to resuscitate a comatose, dying loved one when the major outcomes are suffering for the patient and for the health care providers.
While I accept that the distinction between rationing and waste avoidance is important from academic and policy view points, my sense is it doesn’t make a difference at the bedside. The patient or family who is told they can’t have a treatment they want doesn’t care what we call it. And, as Dr. Brody points out, the treatment that is generally considered wasteful, futile or rationable may be just what a particular patient needs.
I would argue that all of the above points us to a system that values good evidence and transparency but is more importantly a system that values ongoing and in-depth communication in which patients, loved ones and members of an interdisciplinary health care team partner to come to agreement on the “best” care.