Appropriate Care Committees

In this week's JAMA, Michael Bevins reviews Kenneth Fisher's In Defiance of Death: Exposing the Real Costs of End-of-Life Care.   While Bevins, like me, is sympathetic to the overall thesis, he is quite critical of the execution:

"The crux of this book’s argument is its proposal of a system of “appropriate-care committees” made up of experienced physicians who would review each questionable case on an individual basis. These local, state, and national committees would be organized into a hierarchical structure, with local committees answerable to state committees and so on. Committee members would be paid a stipend, thereby avoiding financial conflicts of interest, and they would have the authority to withhold payment for care deemed inappropriate. Such a system is a facile answer to an exceedingly complicated problem. . . .  Unfortunately, this book makes it difficult to seriously evaluate the idea of appropriate-care committees, because as presented here, the idea is woefully underdeveloped . . . .  as presented here, the idea is too inchoate to get very far."

I have been working to develop the idea of appropriate care committees beyond what Fisher offers in his book.  The working draft of the first article is available here.  Here is the abstract:

2.6 million Americans die each year. A majority of these deaths occur in a healthcare institution as the result of a deliberate decision to stop lifesustaining medical treatment. Unfortunately, these end-of-life decisions are marked with significant conflict between patients’ family members and healthcare providers. Healthcare ethics committees (HECs) have been the dispute resolution forum for many of these conflicts.  

HECs generally have been considered to play a mere advisory, facilitative role. But, in fact, HECs often serve a decision making role. Both in law and practice HECs increasingly have been given significant authority and responsibility to make treatment decisions. Sometimes, HECs make decisions on behalf of incapacitated patients with no friends or family. Other times, HECs adjudicate disputes between providers and the patient or patient’s family.  

Unfortunately, HECs are not up to the task. They lack the necessary independence, diversity, composition, training, or resources. HECs are overwhelmingly intramural bodies, comprised of professionals employed directly or indirectly by the very same institution whose decision the HEC adjudicates. HECs make decisions that are corrupted, biased, careless, and arbitrary. 

To address the problems of intramural HECs, I propose that their adjudicatory authority be relocated to a multi-institutional HEC (MI-HEC). Thereby, no HEC could have a controlling voice in the adjudication of its own dispute. A multi-institutional HEC preserves the best but avoids the worst of intramural HECs. Specifically, the MI-HEC preserves the expertise and extrajudicial nature of the HEC. But in contrast to an intramural HEC, a multi-institutional HEC possesses better resources, a greater diversity of perspectives, and the neutrality and independence required by due process.