Medical Humanities Blog

Medical Humanities in the ICU

Carey Cuprisin, an ER resident (who also happens to be an attorney) has a fascinating post on the differences in end-of-life care in the ICU compared to the end-of-life care provided to his brother's cat.

Excerpt:

The medical ICU is a joyless place. It's a place where very sick people stay, usually at the end of their lives, to absorb all the high-tech medicine that we can possibly throw at them, in order to live a few more weeks than they would have otherwise.

[ . . . ]

My brother just lost his cat, Huckleberry. He was the greatest cat. Friendly, intelligent, and always hungry! He had some klnd of cancer that deformed his jaw, and he had to have it taken off. For a cat who loved to eat, that must have been a particularly large loss. My brother, because he loved this cat, did the best thing for him in the end, and had him "put down" by the vet. Huck, RIP.

If Huckleberry had been a person, he would almost surely have been laid up in the ICU for the last few weeks of his life. He'd have been unconscious, with a feeding tube down his throat to substitute for the eating he'd loved before the cancer . . .

The entire post is worth reading.  Moreover, Cuprisin cites to a poem which he finds meaningful to his practices in the ICU, which itself speaks to the significance of the medical humanities.  No?

Literature Review

I apologize for falling behind a bit with the Literature Reviews.  Formatting problems in attempting to cut and paste abstracts has proven to be more difficult and more time-consuming than I had anticipated. 

Today's Review will collate articles from:

Journal of Law, Medicine, & Ethics

Medical Anthropology Quarterly

Journal of Medical Humanities

ASBH 2006

I am back from the ASBH Annual Meeting.  It was an interesting and worthwhile experience, and I will try to present some of my impressions of the conference in some posts over the next week.  I printed up some flyers advertising the existence and aims of this blog, and was happy to see that all copies were gone by the end of the conference today.

Accordingly, I want to extend a hearty welcome to any new readers; I am sorry to be so repetitive on this point, but the quality of this blog is really a function of the quality of the interaction and conversation that it promotes and reflects.

Aside from any posts related to ASBH, this week will feature a Literature Review, (which I have fallen behind on; my apologies for that), and a particularly important entry in the Who's Who series.

Onward and upward!

New Book on History of Pain

Perhaps my primary area of interest in bioethics and the medical humanities is pain and pain management.  Thus, I was pleased to learn of the recent release of Thomas Dormandy's The Worst of Evils: The Fight Against Pain:

This riveting book takes the reader around the globe and through the centuries to discover how different cultures have sought to combat and treat physical pain. With colorful stories and sometimes frightening anecdotes, Dr. Thomas Dormandy describes a checkered progression of breakthroughs, haphazard experiments, ignorant attitudes, and surprising developments in human efforts to control pain. Attitudes toward pain and its perception have changed, as have the means of pain relief and scientific understanding. Dr. Dormandy offers a thoroughly fascinating, multi-cultural history that culminates with a discussion of today’s successes—and failures—in the struggle against pain.

The book’s exploration is fused with accounts of the development of specific methods of pain relief, including the use of alcohol, plants, hypnosis, religious faith, stoic attitudes, local anesthesia, general anesthesia, and modern analgesics. Dr. Dormandy also looks at the most recent advances in pain clinics and palliative care for patients with terminal disease as well as the prospects for loosening pain’s grip in the future.

The author is a retired chemical pathologist.

The book is reviewed favorably in the Guardian, and in the New England Journal of Medicine (the latter review is authored by Martha Stoddard Holmes).

(H/t to Tim McIndoo)

Futility

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.

________________________________

Some useful Internet Resources on Futility:

University of Pittsburgh

Northwestern University's Resource for End-of-Life Care Education

American Medical Association

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.

ASBH Conference

The Annual Conference for the American Society of Bioethics & Humanities ("ASBH") takes place this Thursday-Sunday in Denver, CO.  I had given some brief thought to live-blogging parts of the conference, but, for a variety of reasons, I doubt that will happen at this point.

Nevertheless, look for a wrap-up post sometime next week.  There should be at least one substantive post this week prior to the conference, either an entry in the Lexicon or in Who's Who in the Medical Humanities.

On the Relationship between Bioethics and the Medical Humanities

Perhaps I have been remiss in not posting on this topic sooner, as one could plausibly maintain that it is an elephant in the living room of this blog.  That is, what is the relationship between bioethics and the medical humanities? After all, I am a research professor in health law and policy, with a decided interest in bioethics and clinical ethics, yet I am training in a medical humanities program, rather than a straight analytic philosophy program.

How can bioethics contribute to the medical humanities, and vice-versa?

One reason I decided to attend a MH grad program as opposed to a straight philosophy program was because of the following thought experiment:

"What happens if I go into an ethics consultation with little appreciation of the ways that humans tend to relate to experiences of health and illness through prisms of religion and spirituality?"

"What happens if I go into an ethics consultation where there is a conflict between the care team and the patient with little appreciation of the history of the doctor-patient relationship -- how it has been theorized and practiced through various periods, and how it has dialectically taken on the modes of practice I see before me?"

"What happens if I go into an ethics consultation with little appreciation for the need many ill persons have to relate their experiences through narrative?"

And so on and so forth.  I believe that exposure to -- not expertise, of course, and certainly not methodological expertise -- the various disciplines of the medical humanities (art, religion, history, narrative studies, etc.) will help make me a better bioethicist than I might otherwise be.  My hope, then, is to use my training in the medical humanities to inform my ethical work (and, more broadly, my life in general).  Of course, this is not to offer necessary conditions for training in bioethics.  Countless bioethicists do their jobs without any formal exposure to the MH, and I am not impugning any particular path to working in bioethics.  I am simply stating what I felt that I needed to do to have a chance at practicing the kind of bioethics I wish to practice.

In addition, I am not remotely suggesting that this is THE proper role for the medical humanities.  As Giskin Day has pointed out in the comments, the medical humanities are worth studying for their own sake, for the insights and ways of thinking and perceiving and making meaning out of the culture of biomedicine.  It should go without saying that one need not have interest in bioethics to have interest in the MH, and that the value of the latter is not remotely contingent on the value of the former.

But I do think that to ignore a conception of the importance of value, of the good, of ethical significance in the medical humanities, would be to do a disservice (I am using purposely broad terms so as to avoid implying that the only way to think about "ethics" is through the actual practice of bioethics; there are many different ways of thinking about value in the context of medicine outside of bioethics).

In an excellent article in 2000, the Journal of Medical Ethics offered three different ways of conceiving of the relationship between bioethics and the MH:

One view envisages medical ethics as just one among a number of subdisciplines, which jointly constitute a wider inquiry, medical humanities. Another sees medical humanities as a larger perspective through which ethical issues emerge as part of an interdisciplinary approach to medical practice and theory. On this view, moral issues are recognised as furnishing one of many pervasive elements of the whole of medical and health care. A third approach is to regard the medical humanities as a sustained exploration of both theory of knowledge (epistemology) and value-inquiry, as these are embodied in clinical medicine. Ethical values are central to, but do not exhaust, value-inquiry in medicine. Indeed, one could argue that a richer understanding of the widest range of human values and goals—as these feature in the lives and perspectives of patients and practitioners alike—is a crucial part of taking moral concerns seriously.

Greaves, D., Evans, M.  "Conceptions of medical humanities."  Journal of Medical Ethics 26 (2000): 65.

I do not think these views are mutually exclusive, though I do not suggest they would all earn equivalent support among scholars.  While I find merit in each view, I am particularly attracted to the second and third conceptions here.  I absolutely agree that MH are a horizon, a way of thinking about "medical practice and theory" "through which ethical issues emerge."  I also agree, as suggested above, that value-inquiry ought not be limited to ethical analysis.  The original purpose of the studia humanitatis was, at least in part, to move the hearts of (wo)men and to facilitate the cultivation of arete.  These purposes are obviously not limited to the domain of ethical inquiry, but, I would argue, are suitable objectives for the entire armamentarium of the humanities.

(Thus, I think the view of bioethics that sees it as "quandary ethics," is reductionist and impoverished.  There is, IMO, so much more to the ethical life in medicine than the managing of ethical dilemmas, as important at the latter is).

In any case, as usual, I am aware that much of these issues remain lively topics of debate, and I obviously am not here trying to flesh out the relationship between bioethics and MH in all of its particulars (nor would I be able to, of course).  But I do think that ethical inquiry into the culture of biomedicine, as practiced by bioethicists, has much to offer the MH, and vice-versa.

Health Law, Policy & Ethics Bibliography

Patrick O'Donnell of the Dept. of Philosophy at Santa Barbara City College was kind enough to email me a copy of his health law bibliography, which has many citations that shade into policy & ethics as well.

You may download a copy here: Download health_law_bibliography.doc

Matt Bodie at Prawfsblawg also posted this bibliography here, in connection with their excellent Research Canons series.

Literature Review

Today's Review will collate articles from:

American Journal of Bioethics (latest issue generally focusing on health disparities, multiculturalism, altruism, and futility)

(I attempted to collate articles from two other journals but struggled for several hours with formatting before giving up.  I will try to correct the formatting issues and post another Lit Review shortly).

Fame!

Thanks to Professor Larry Solum for the kind words.