This is a guest post by Anne Studholme, Manewitz & Studholme, LLC, Princeton, NJ
As a lawyer representing amici in the Betancourt case, I was interested to read Jacob Appel's comments in the June 23rd Huffington Post. I have the following reply:
1. Appel characterizes the pro-Betancourt amici as "fringe." That's a slur. I represent the following groups who submitted a joint brief and oral argument as amici curiae in Betancourt: Not Dead Yet, ADAPT, the Center for Self-Determination, the National Spinal Cord Injury Association, the National Council on Independent Living, the American Association of People with Disabilities, and Disability Rights New Jersey. This is a broad-based coalition operating well within the dominant polity. (Agudath Israel of America and the Rabbinical Council of America, the other two family-side amicus groups, are hardly "fringe" either. The RCA, for example, represents over 1,000 Orthodox rabbis in this country, and AIA represents the yeshivas.)
2. The diagnosis of Persistent Vegetative State was based on two cursory, ten-minute examinations. Contrast this with the extensive examinations, including second opinions, which Appel supports and which New Jersey law already requires in these cases. Further, Mr. Betancourt's attending physician argued that life-support should be terminated because he was certain that Mr. Betancourt was suffering pain. This would be inconsistent with a PVS diagnosis as traditionally understood. Under New Jersey law, we have one set of procedures for addressing the case of a person who has been confirmed to be incapable of experiencing sensations (e.g., Karen Ann Quinlan), and another for someone who may well be suffering pain (e.g., Claire Conroy.) On the record made this case, the outcome would have been the same either way, but policy prescriptions based on claims that this is a "PVS" case may miss the mark.
3. Appel seems to share widespread unfamiliarity with the constraints on surrogate decisionmakers in New Jersey. Upon an appropriate showing (not made in this case), doctors may be appointed guardians. Upon a showing which meets an "objective" standard, life support may in certain cases be terminated in order to end very severe, intractable agony. In all events, the surrogate is bound to make decisions based upon what he or she best perceives would be the decisions of the person at issue were that person able to communicate. That's not to say this is always what happens, but it is the legal requirement. A showing that the surrogacy is being abused can result in a replacement surrogate or guardian being appointed. That showing was not made by the Trinitas doctors when they had the opportunity to do so in court.
4. Appel also touched on the question as to how many people now are living with a well-founded PVS diagnosis and concomitant old age or very poor health. Other than vague references in the medical providers' briefs to potentially thousands of cases, there has been no evidence introduced on this point. Since those briefs seem to include people who are very old, OR very sick, OR in PVS, it is hard to tell what actual population is being described. Until, if ever, we reach the point where our society truly confronts unsupportable costs for sustaining these lives, a prudent Court would not base sweeping changes in life-or-death and bedrock civil-rights law on a hypothetical future.
5. Appel forthrightly admits that he would have the Court uproot the restraints on taking away life support and move them from actual brain death to unconsciousness with no likely hope of recovery-- a momentous step. Until now, the legal foundation upon which another person could disconnect someone's life support was the principle of self-determiantion-- that the act was in accordance with the person's will, not in some paternalistic view of what was "best" for the person, or self-centered view of what was cheapest for society. Appel refuses to couch the "termination" in "dignity" cant, but may misunderstand that the action taken by Trinitas here was removal of the port by which Mr. Betnacourt had received dialysis, not a refusal to provide him with dialysis in the future-- an important legal distinction. The court directed that the port be reinstated to preserve the status quo. It did not order additional treatments.
6. In this case, at least, "so-called 'pro-life'" organizations, as Appel puts it, did not support the family. Perhaps most notably, the Catholic Healthcare Partnership of New Jersey instead supported Trinitas' claim that doctors should have the last say in all situations as to when to terminate life-sustaining care.
7. As Professor Pope has noted, the Trinitas doctors claimed it would be unethical to keep Mr. Betancourt alive. It was the existence of this putative standard upon which they, and presumably anyone who would entrust doctors with unilateral decisions in these cases, would rest. But Pope has shown that there is so much disagreement within the medical community on these questions that a general standard cannot be elucidated, at least not now, and not in New Jersey. Appel's suggestion that if a doctor could be found to keep Betancourt alive, he would be welcome to do so, goes against the Trinitas position that keeping Betancourt alive is unethical.
8. Finally, in my view, this case did turn on money, though Trinitas' CEO claims not. But I wonder why it is that, when discussing the costs of keeping someone in Mr. Betancourt's situation alive-- costs that are primarily for nursing and attendant labor, not for the relatively simple dialysis, feeding tube, and respirator machines-- commentators seem always to pit the costs of care dollar-for-dollar against MEDICAL expenditures in other areas. In part, this is due to the way in which Medicaid dollars are allocated. But that is essentially circular. WHY is is that long-term care dollars are seen as competing with acute-treatment dollars (or, as Appel would have it, basic R&D)? Appel has remarked on this category confusion elsewhere: how do we decide what is and what is not to count as a medical service?