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Institutional Futility Policies are Inherently Unfair

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Abstract

For many years a debate has raged over what constitutes futile medical care, if patients have a right to demand what doctors label as futile, and whether physicians should be obliged to provide treatments that they think are inappropriate. More recently, the argument has shifted away from the difficult project of definitions, to outlining institutional policies and procedures that take a measured and patient-by-patient approach to deciding if an existing or desired intervention is futile. The prototype is the Texas Advance Directives Act, but similar procedures have been widely implemented both with and without the protection of the law. While this method has much to recommend it, there are inherent moral flaws that have not received as much discussion as warranted. Because these strategies adopt a semblance of procedural justice, it is assumed that the outcomes of such proceedings will be both correct and fair. In this paper, I argue that there are three main irremediable defects in the policy approach: there is the potential for arbitrary decision-making about futility in specific cases; there are structural, pre-ordained consequences for ethnic minorities who would be disproportionately affected by the use of these procedures; and the use of rationing justifications to support the use of these policies. These flaws detract so much from any benefit that could be derived that they make such strategies more harmful than helpful.

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Notes

  1. For a view from someone who is not a physician, see Katz (2011).

  2. For a discussion of procedural justice, in both its impure and pure forms with its challenges, see Daniels and Sabin (2008, pp. 79–81) and Rawls (1999, pp. 74–78). The point that Rawls makes in his descriptions of perfect and imperfect pure procedural justice are extremely relevant to my criticism in this essay. It is assumed that a carefully considered and crafted procedure, such as TADA, will—if followed studiously—result in a just outcome, irrespective of the specificity of local circumstances of each case. The error in this assumption is that illustrated by Rawls in his example of a trial, in which the result that is hoped for (the truth) is not guaranteed even if all the rules are obeyed in punctilious fashion. One could qualify this wish by stating that so long as we get the truth (the right answer) almost all the time, then that is good enough (of course, this begs the question as where the cutoff should be between an acceptable and unacceptable level of mistakes).

  3. These references give an excellent overview of both the development and some of the challenges in the Texas law [especially Dr. Fine’s (2001) paper on the history of the statute]. See also Heitman and Gremillion (2001) and Fine and Mayo (2003).

  4. This is concisely expressed in “Opinion 2.037—Medical Futility in End-of-Life Care”, available at http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2037.page. Importantly, the last part opines that when all other efforts at dispute resolution have failed (including attempting to transfer the care for the patient to another physician or facility), “the intervention need not be offered”.

  5. The main distinction is that the institution may go to court to attempt to have surrogate decision-makers removed on the grounds of making medically inappropriate decisions on behalf of the patient (Truog 2009a, b; Truog and Mitchell 2006; Brett 2005). For a discussion of some of the unresolved legal issues, see (Bissel 2010; O'Callaghan 2008).

  6. The Johns Hopkins Hospital, Baltimore, MD.

  7. See Smith et al. (2007). In this review of 5 years’ worth of experience with TADA, the overwhelming majority of cases appeared to involve end-of-life decision-making. Also see (Fine and Mayo 2003) for other details of this process.

  8. Ironically, by virtue of their “special” treatment, VIPS may be subjected to substandard care in the misguided idea to provide them with the “very best” bedside management (i.e., the Chief of Medicine instead of the senior resident providing everyday care).

  9. There has not been a detailed analysis of either the ethnicities of patients for whom TADA has been invoked or the possible effects of this law and its implementation on healthcare system trust in minority communities in Texas, mainly because the data does not exist. Interestingly, Dr. Fine, one of the original architects of TADA, has stated that there was concern about collecting demographic data mainly for these reasons, even though such results would not in and of itself be proof of discriminatory application of the law (R. Fine, personal communication).

  10. For instance, this is the case at individual hospitals in North Carolina, Massachusetts and Maryland. I am grateful to Prof. Lance Stell and Drs. R. Truog and M. DeCamp for providing me with their hospital’s policies in this area.

  11. See Callahan (2009). He calls this phenomenon “patient self-definition”.

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  1. Departments of Pediatrics and Medicine, Trent Center for Bioethics, Humanities and History of Medicine, Duke University Medical Center, 108 Seeley G. Mudd Building, Box 3040, Durham, NC, 27710, USA

    Philip M. Rosoff

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Rosoff, P.M. Institutional Futility Policies are Inherently Unfair. HEC Forum 25, 191–209 (2013). https://doi.org/10.1007/s10730-012-9194-9

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