If ever there were a controversial term in bioethics, "futility" would surely qualify. Thus, "futility" is the subject for today's Lexicon. There is much debate about whether futility is even a useful concept, or whether it obfuscates some of the considerations and issues that it is thought to embody. Indeed, there are so many conceptual thorns and problems regarding the concept of futility, that it seems difficult to even attempt to characterize any small piece of it in as compressed a format as a blog post. Thus, this attempt is just that, and serves as nothing more than the thinnest of introductions some of these problems.
(There is a wealth of useful Internet resources on medical futility, and I will provide a short list of some such links at the end of this post.)
Medical futility, at its most basic level, generally (but not uncontroversially) refers to the notion that a given medical intervention or set of interventions will provide no benefit for the patient. One textbook refers to it in the clinical setting as "an effort to provide a benefit to a patient, which reason and experience suggest is highly likely to fail and whose rare exceptions cannot be systematically produced." Albert R. Jonsen, Mark Siegler, & William J. Winslade, Clinical Ethics (6th ed. 2006).
Of course, these assessments obviously leave open some of the profound epistemological, conceptual, and procedural problems with futility. That is, how does one know that a proposed (or continued) intervention will be of no benefit to the patient? Who gets to decide? What happens if there is disagreement over the issue of benefits?
I will take these questions one at a time and attempt to examine some of the issues that underlie them. Again, the intent is most certainly not to provide any answers but simply to introduce some of the features that inform the controversy.
(1) How does one know that a proposed (or continued) intervention will be of no benefit to the patient?
This is obviously a crucial question, and has much to do with the fact that benefits are weighed entirely differently by different people in different circumstances. For example, in the heartbreaking PVS scenario, John may quite reasonably believe that the continuation of organic life, even if supported wholly by artificial means (i.e., a ventilator or artificial nutrition and hydration) is of benefit to the patient. Jane may also quite reasonably maintain that the continuation of organic life with virtually no hope for any kind of recovery of consciousness bestows no benefit at all on the patient. Indeed, Jane may perceive the continued life-support as simply prolonging suffering, if not for the patient, then surely for the patient's friends and family.
I think it is safe to suggest that Jane would be more amenable to the concept that further treatment of the patient in the PVS would be futile, whereas John might be horrified at the notion. Thus, the notion of "benefit" links back to a complicated and intricate network of beliefs, values, and norms about the nature of life in general, and to an almost aretaic question of 'what kind of a person do I want (myself or others) to be?' (Of course, this raises an additional conceptual problem regarding the nature of "personhood," which, as Dworkin addresses in Life's Dominion, is obviously central to the futility debate).
Finally, one should mention that this question of benefit is of particular interest to disability rights' advocates, who point out that disabled people have suffered decades (centuries?) of systematic undervaluation of their own quality of life. If that is so (and it seems almost undeniable that it is), then there is good reason why disabled people in particular might be very suspicious of any attempt by a non-disabled physician to assess the benefit of a life-sustaining treatment. This perspective also explains the fear that some disability rights' advocates have of taking the power to make such decisions out of the hands of the disabled person him or herself, or out of the hands of the disabled person's surrogate.
(2) Who gets to decide?
If there exists some basic dissent on what kinds of treatments produce benefits for certain kinds of patients, then the next question is whose interpretation will be privileged. Some of the most vigorous opponents to statutes that permit providers to deny requested treatment on grounds of medical futility argue that allowing physicians and institutions the final say is nothing other than a return to medical paternalism. It is, they might argue, simply another case where providers and institutions dictate to patients and families to whom treatment will be provided and what form that treatment will take.
On the other hand, always deferring to surrogates' or families' decisions on whether a given treatment ought to be provided (i.e., is futile) seems essentially to co-opt the care team and the instititution, and might well require the care team to provide care that they deem ethically inappropriate. Should a care team be required to provide care that they are ethically opposed to?
Part of the inquiry under this question turns on how clinical judgment is conceived. The assessment that a given treatment is futile can hardly be said to be a value-neutral inquiry. This can be seen in the example enumerated above. I do not believe that an assessment of benefit for the patient in a PVS can be made outside the ambit of the particular provider's values, beliefs, and norms informing and influencing that assessment. This, of course, is not a weakness of clinical judgment; quite the contrary, I would not want to be treated by a physician whose clinical judgment was not informed by his/her subjective values, experiences, and ethical mores (which is obviously not to say that disregarding scientific evidence in favor of those values, experiences, and mores is sound practice). But it does suggest that viewing a conflict between provider and patient as one pitting "objective scientific facts" against "subjective feelings and judgments" is ill-advised.
(3) What happens if there is disagreement over the issue of benefits?
This question seems to belong, at least over the duration, to the realms of law and policy. That is, if there exists such disagreement over the propriety of treatment (or withdrawal of treatment) that compromise seems unlikely, then there seems little option but to turn to legal mechanisms for "resolving" the conflicts (I use the quotes to indicate that the legal response obviously does not resolve the ethical conflict).
My own state of residence, Texas, is the site of one of the most pronounced debates over this third question, prompted by the Texas Advance Directive Act, which has earned both praise and opprobrium for the framework it provides for addressing these conflicts, when they occur. The Texas Legislature is set to review the Act in the upcoming legislative session, and it will be interesting, to say the least, to see what they do.
A full analysis of the issues swirling around the Texas law is well beyond the scope of this blog post, but this short article (PDF) (written by a colleague of mine at the Health Law & Policy Institute) may provide some insight.
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Some useful Internet Resources on Futility:
Northwestern University's Resource for End-of-Life Care Education
University of Washington Ethics in Medicine
Again, these links are nothing more than a dip in the water, so to speak. There are hundreds of web sites that address medical futility; a Medline search alone for "medical futility" produced 1571 citations.
This discussion on futility is very nicely laid out. Missing, however, is a discussion of "speed." ie, a man hit by a train, vrain crushed, and 80% of body burned, not expected to live out the week, vs a man infected with a serious condition expected to result in death, but will take many years. This also raises the question of who's time, as in a person in a como who cannot respond to nor reasure the medical team that "I'm not dead yet." Look at the many stories of folks who awake from coma after decades on "life support." (and many of them having been deemed futile cases)
Posted by: Kathy Podgers | January 28, 2007 at 12:12 PM