Medical Humanities Blog

Medical Humanities Lexicon: Theodicy

Today's entry in the Medical Humanities Lexicon is "theodicy."

I believe in the sun even when it is not shining.

I believe in love even when feeling it not.

I believe in God even when he was silent.

This refrain was inscribed on the wall of a cellar in Cologne, Germany where Jews hid from the Nazis.  It was found by Allied troops in 1945.  Aside from its stark beauty, it neatly encapsulates the problem of theodicy, which is roughly defined as the question of how God can be perceived as good, right, or just, given the existence of suffering and evil in the world.

The problem arises as a dilemma in the technical sense.  Given the phenomena of evil, there are apparently two possibilities: either God is incapable of preventing the evil in question, or God is capable of preventing that evil but chooses not to do so.  The first option seems unsatisfying because it denies omnipotence to God, which is deeply problematic at least for many who ascribe Judeo-Christian beliefs.  The second option is arguably worse because it problematizes the notion of a just, benevolent God; how could such a God choose to permit such evil to occur? How could God be silent in the face of such suffering?

The problem of theodicy, which is sometimes referred to as the ontological problem of evil, is at least as old in Judeo-Christian traditions as the Book of Job itself, which is a marvelous albeit deeply troubling work.  To provide a basic narrative, Job is a righteous person who has generally enjoyed good health and prosperity.  Suddenly, and for no apparent reason, a number of horrific calamities befall him.  He loses all of his money, his children die one by one, he becomes afflicted with a number of gruesome illnesses, etc.  He naturally begins to wonder why his life has taken such a sharp turn, especially given that he has generally lived a life of piety.  This last point is important, for it is no answer to Job's problems to assert that his current misfortunes are his just desert, for there is no suggestion anywhere in the text that Job has perpetrated any works that would merit such punishment.

Job's problem, of course, is the problem of theodicy: the innocent suffer.  How can God justify it? How can God be both all-powerful and benevolent if the innocent suffer? The remainder of the text consists generally of a dialogue between Job and his peers, who assert the point I have already suggested is unpersuasive: Job's misfortunes must be linked to his own sins.  The idea that suffering is linked to personal sin is pervasive, especially in Judeo-Christian morality, and, in On the Geneology of Morals, Nietzsche provides the most eloquent explanation for why this idea maintains such currency: “[t]he meaninglessness of suffering, not suffering itself, was the curse that lay over mankind so far . . . .” (162) The sin-suffering narrative is so powerful precisely because it engenders meaning in the face of suffering, which may be more tolerable than the idea that suffering is entirely arbitrary:

suffering was interpreted; the tremendous void seemed to have been filled; the door was closed to any kind of suicidal nihilism . . . it placed all suffering in the perspective of guilt.  But all this notwithstanding -- man was saved thereby, he possessed a meaning; he was henceforth no longer like a leaf in the wind.

Ibid.

Job, however, rejects this narrative.  He insists that he is blameless, though his peers repeatedly return to the sin-suffering link both to explain Job's misfortunes and to preserve the notions of an omnipotent benevolent God.  In chapter 21 of the Book, Job moves to preseve the notion of a just God at the expense of the notion of an omnipotent God.  He argues not that God rules the world unjustly, but that he does not "rule" it all.  In a conception that presages the Deist ethos, the world just runs on without divine control.

God eventually appears, but one of the most fascinating puzzles of the entire Book is that God never answers the problem of theodicy.  Rather, God points out the immense chasm separating human and divine knowledge, and implies that he is uniquely concerned with the plight of humanity.  But he never provides a resolution to the dilemma.  Interestingly, Job is utterly satisfied with this response.  Some exegetes have interpreted this climax as signfying Job's relief at the presence of God.  God is no longer silent, to return to our original quotation.  His presence alone soothes Job, even if he supplies no answer to the problem that has been causing Job such anguish.

The paradox here is rather profound.  While Job may be soothed by being close to God, he could not be farther from divine understanding, as God himself reminds Job.  Many Jewish thinkers have attempted to resolve this paradox in one of two principal ways: (1) tracking Job's reaction, some commentators, most notably Maimonides have accepted the epistemic gap between human and divine comprehension, but have argued that suffering may be transcended through closer relation to the divine presence itself; or (2) some commentators, especially 20th century thinkers, have adopted Job's earlier tack, and begun to reject the notion of an omnipotent deity.

Maimonides, roughly contemporary of Aquinas, was arguably just as enamored with the concept of right reason as was the latter.  He suggested that through our intellect we could transcend our material existence and the suffering that accompanied it and move closer to God.  Though I admit to finding the transcendentalist response deeply unsatisfying, one arguably redeeming feature of the Maimonidean version is that it places the onus on humans to work out the problem of theodicy.  According to Maimonides, we cannot expect God to solve this problem for us.  It is humans who must grapple with it.  This response to me sounds remarkably familiar to one of my favorite essays ever, one which holds great personal significance for me, Camus' Myth of Sisyphus.  It is Sisyphus who choose his own fate by pushing the boulder up the hill.  Il faut imaginer Sisyphe heureux.

While transcendentalism maintained a powerful hold in Judeo-Christian thought for centuries following Maimonides, it became increasingly difficult to stomach after the Shoah.  Richard Rubenstein argues that "[t]he fact of Auschwitz rules out such ideas forever" (Leaman 187).  Moreover, the notion of a God who is utterly detached from the suffering of his children is deeply problematic for a tradition built upon the negation of that notion.  Harold Kushner, in his well-known account of his attempts to make meaning of the death of his son, escapes the theodic dilemma by rejecting God's omnipotence.  He observes that he can worship a benevolent but not all-powerful God, but that he cannot worship an omnipotent being who allows the innocent to suffer so.  Elie Wiesel adopts an entirely pragmatic approach: to abandon God would be to grant success to the hopes of the Nazis in seeking to exterminate a Jewish way of living and thinking.  Thus, belief in God is a pragmatic course, though he does not offer any resolution to the problem of theodicy itself.

Finally, Leibniz proposed that this world, even with its significant evils, is the best of all possible worlds.  Under this analysis, all actual evils are essential ingredients in the divine plan in which this world remains the best of all possible worlds.  To omit these evils would wreck the entire design itself.  Numerous commentators have criticized this proposal on many different grounds, the most obvious of which is that it seems to rely on a brazenly consequentialist ethic.

It should take no great exercise of moral imagination to see the connection of the problem of theodicy to the medical humanities.  The question of how an omnipotent, benevolent God can permit the innocent to suffer remains a profound problem for many, both for providers and health care professionals, and for patients and caregivers (each of whom may well take on both kinds of roles in their lives on multiple occasions).  Of course, the problem of theodicy is no problem at all for atheists, and there are certainly non-Western belief systems which are untroubled by the problem because the relevant deity or deities is not deemed omnipotent to begin with.

Nevertheless, I submit it is safe to suggest that there are many participants in medical practice for whom the problem of theodicy is profound and agonizing.  Even outside of a Western religious paradigm, Eric Cassell, one of the chief authorities on suffering, states that "[t]ranscendence is probably the most powerful way in which one is restored to wholeness after an injury to personhood" (45).

And even for those untroubled by the problem of theodicy, the sin-suffering narrative has demonstable clinical effects.  Some patients, for example, do not request adequate pain management because they feel that the pain is their just desert for the sins they have committed.  Through their suffering, they hope to expiate their sins.  Susan Sontag's Illness as Metaphor highlights some of the ways in which the suffering of cancer patients is linked to sin.  Saul Brody's seminal work on the history of leprosy shows an even closer link between illness, suffering, and sin.  Arguably, part of the impetus for such a narrative is that it resolves the problem of theodicy.  If suffering is linked to merit, or lack thereof, the notion of an omnipotent, benevolent God is left untroubled.

Thoughts?

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Bibliography

Mitchell, Stephen, trans. The Book of Job.  New York: HarperPerennial Press, 1987.

The Cambridge Dictionary of Philosophy, 2d ed., s.v., "Theodicy."

Leaman, Oliver.  Evil and Suffering in Jewish Philosophy.  Cambridge: Cambridge University Press, 1997.

Freeman, David L., Abrams, Judith Z., eds.  Illness and Health in the Jewish Tradition.  Philadelphia: The Jewish Publication Society, 1999.

Kinzbrunner, Barry.  "Jewish Medical Ethics and End-of-Life Care."  Journal of Palliative Medicine 7, no. 4 (2004): 567.

Barilan, Y. Michael.  "Revisiting the Problem of Jewish Bioethics: The Case of Terminal Care." Journal of the Kennedy Institute of Ethics 13, no. 2 (2003): 147.

Cassell, Eric J.  The Nature of Suffering and the Goals of Medicine.  Oxford: Oxford University Press, 1991.

Kushner, Harold.  When Bad Things Happen to Good People.  New York: Avon Press, 1981.

Nietzsche, Friedrich.  On the Geneology of Morals.  Translated by Walter Kauffman & RJ Hollingdale.  New York: Random House, 1989.

Kapeli, Silvia.  "Between Suffering and Redemption: Religious Motives in Jewish and Christian Cancer Patients' Coping."  Scandinavian Journal of Caring Sciences 14, no. 2 (2000): 85.

Gunderman, Richard B.  "Medicine and the Question of Suffering."  Second Opinion 14, no. 1 (1990): 16.

Rahula, Walpola.  What the Buddha Taught.  New York: Grove Press, 1974.

Sontag, Susan.  Illness as Metaphor and AIDS and its Metaphors.  New York: Picador Press, 1989.

Brody, Saul.  The Disease of the Soul: Leprosy in Medieval Literature.  Ithaca, NY: Cornell University Press, 1974.   

Hegelian Dialectic

Today's entry in the Lexicon is "Hegelian dialectic."  Perhaps I am mistaken about this, but it seems to me like Hegel is somewhat less fashionable these days than he might have once been (perhaps this is because phenomenology is somewhat less dominant in Western philosophy than it was fifty years ago).  Regardless, I think his notion of dialectic is extremely important to any kind of basic understanding of history, and I also think it coheres very nicely with some scholars' insistence on historicizing culture and discourse (Taylor and Toulmin immediately leap to mind, see below).

What is the Hegelian dialectic? As I understand it, it describes a certain model of history, a way of thinking about cultural, intellectual, economic, and social history.  It can be described quite succintly.  In any given society, there are sets of ideas, conditions, and values that enjoy a kind of establishment; they are more or less accepted.  This is called the "thesis."  Eventually, these accepted ideas, conditions, and values are challenged by an opposing set of ideas, conditions, and values, called the "antithesis."  From the clash of these forces and influences, an amalgam is formed, called the "synthesis."  Thus, the Hegelian dialectic is "thesis" + "antithesis" yields "synthesis."

It is crucial to note that the dialectic (being a dialectic) is iterative.  The process continues to repeat itself, with new syntheses eventually concreting and becoming established theses.  In addition, one need not oversimplify -- at any one time, there can be (and likely are) multiple theses interacting with multiple antithesis which informs and constructs multiple syntheses.  Part of the reason the Hegelian dialectic is important is its dynamism, IMO. 

Finally, a caveat: Hegel linked his model of history to his belief in the inevitable progress of man, that through iterations of the dialectic humanity would continue to reach higher achievements.  I think it is important to observe that the significance of his dialectic is not contingent on the merits of the belief in the inevitable progress of man.  That is, it is entirely possible to see the dialectic as a useful prism for perceiving all manner of aspects about history without maintaining that iterations of the dialectic will necessarily lead to human or social progress.

Why should the Hegelian dialectic matter to the medical humanist? For one, it implies a point articulated by many contemporary scholars, that intellectual movements and traditions must be historicized -- they must be understood in context of the ideas and conditions out of which they arose (and, pace Hegel, against which such ideas and conditions were opposed or were used to challenge).  In his classic essay "Two Theories of Modernity," Taylor warns against viewing cultural and intellectual conceptual schemes as acultural and ahistorical.  A peculiarly modern consciousness was not simply an inevitable result of progress and natural science -- it must be seen in light of the particular ideas and material conditions out of which it arose.  It must be contextualized and historicized.

Contextualizing and historicizing modernity is Toulmin's project in Cosmopolis, as he explains some of the material conditions of the 17th century that resulted in thinkers like Montaigne and Erasmus on the one hand, and Descartes, Galileo, and Bacon on the other, adopting wildly divergent ways of conceiving the world.

The point, as I see it, is that understanding the modern intellectual tradition in the West seems to require an understanding of past theses, antitheses, and syntheses that inform and construct that tradition.  Thus contextualized, some important pieces of the intellectual and cultural histories of modernity fall into place.  The metaphor I like to use to describe this phenomenon is that of flour and eggs in finished cake -- you may not see them, but they surely construct the perceptible product.  They are in every bite, and understanding the cake isn't really possible without understanding the dynamic interactions by which the flour and eggs are baked into the cake.

Thus, understanding the physician-patient relationship requires an understanding of the dialectical roots of the relationship -- where it come from, how it evolved, etc. -- in other words, an understanding of some of the theses, antitheses, and syntheses that inform and construct the current tradition(s).  Understanding, to use Shai Lavi's recent book, current attitudes and practices towards euthanasia and dying in the U.S. requires analysis or at least cognizance of some of the dialectical attitudes and practices out of which our current practices and attitudes arise.  It is no accident, then, that Lavi begins his analysis of modern attitudes in the 19th century.  To understand the Hegelian dialectic is, IMO, to understand the importance of contextualizing and historicizing practices.

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Bibliography

Charles Taylor, "Two Theories of Modernity," 25, no. 2, Hastings Center Report (1995): 24-33.

Stephen Toulmin, Cosmopolis: The Hidden Agenda of Modernity (New York: University of Chicago Press, 1990).

J.M.E. McTaggart, Studies in the Hegelian Dialectic (1896).

Charles Taylor, Hegel (Cambridge: Cambridge University Press, 1977).

Charles Taylor, Hegel and Modern Society (Cambridge: Cambridge University Press, 1979).

Hans-Georg Gadamer, Hegel's Dialectic: Five Hermeneutical Studies, trans. P. Christopher Smith, (New Haven: Yale University Press, 1982).

The Hegel Society of America.

Medical Humanities Lexicon: Palliative Sedation

Today's entry in the Lexicon is palliative sedation.  I've been interested in the concept for some time, and "aeb" over at Women's Bioethics Blog put up an interesting post on the subject.

aeb writes at least in part from a nursing perspective, and she observes:

Nurses can struggle with palliative sedation because it can hasten death. The reason palliative sedation is ethically ok is due to the intent one has while administering it. The nurse must remember their intension is to promote comfort, but with that death may occur.

Erin Brender recently defined palliative sedation as "the use of sedative medications to relieve extreme suffering by making the patient unaware and unconscious (as in a deep sleep) while the disease takes its course, eventually leading to death. The sedative medication is gradually increased until the patient is comfortable and able to relax. Palliative sedation is not intended to cause death or shorten life."  294 JAMA 1850 (2005). 

An older common term for the same phenomenon is "terminal sedation," but a hospice physician informed me some time ago that the generally preferred current term, at least in my locale, is palliative sedation. 

I've mentioned on this blog before that one of my own academic interests is pain & pain management, and PS is obviously intricately connected to issues of pain management.

Here is the remainder of my comment in response to aeb's post, which will hopefully serve to explain briefly some of the important aspects of palliative sedation:

I think that a much better job needs to be done -- by the media, bioethicists, nurses, physicians, etc. -- of carefully disentangling notions of euthanasia from palliative sedation. The formal philosophical doctrine on which the distinction is based is, of course, the principle of double effect, and understanding it has helped me to gain some insight on the distinction.

The reason I think this is so important is because if one is able to explain why palliative sedation is utterly conventional (in terms of clinical practice, not conventional for the patients and families, of course!), one might be able to get somewhere in terms of pain management without invoking all of the understandable concerns about euthanasia (not saying these concerns aren't relevant, only that they are not equivalent to palliative sedation).

My understanding is that palliative sedation goes on every day in clinical settings all over the country, and I think the reason this is generally accepted, if not widely discussed, is because there is something of the principle of double effect that is kind of present in Western cultural heritage. That's not the only reason, but I find that most people I speak with about the principle seem to grasp it pretty quickly, and say that it tends to confirm their prior intuitions.

The principle of double effect in its modern sense is generally attributed to Aquinas.  Though the literature on the principle is explosive, the SCP explains:

"The conditions provided by Joseph Mangan include the explicit requirement that the bad effect not be intended:

A person may licitly perform an action that he foresees will produce a good effect and a bad effect provided that four conditions are verified at one and the same time:

1. that the action in itself from its very object be good or at least indifferent;
2. that the good effect and not the evil effect be intended;
3. that the good effect be not produced by means of the evil effect;
4. that there be a proportionately grave reason for permitting the evil effect” (1949, p. 43)."

Thus, in the context of opioid analgesia, a provider who administers high doses of a strong opioid with the intent of hastening the death of the patient cannot seek ethical sheter under the doctrine of double effect (because the "bad" effect is intended).  The provider who adminsters high doses of a strong opioid with the intent of ameliorating pain knowing that such high doses may hasten death, and who follows the other requirements and safeguards built into the doctrine of double effect, has acted (supposedly) in an ethically sound manner.  Under the latter, the death of the patient is literally the second (or double) effect.  See id.

Though I have no evidence for this claim, it is not inconceivable (especially insofar as the principle of double effect has deep roots in Western culture -- one ought not neglect the dialectical aspects of history, especially High Medieval history, where many aspects of the modern world can be traced, IMO) that there is some morally intuitionist appeal to the principle of double effect.  There may be some aspect of it that simply "feels" right to many Westerners.  I must hasten to add here that I am not advancing an entirely intuitionist platform for the principle, as that was most certainly not what Aquinas intended, nor am I prepared to commit to a wholly intuitionist approach (on the difficulties with moral intuitionism, see Levy, S.S., "A Limit on Intuitionistic Methods of Moral Reasoning," The Journal of Value Inquiry, Vol. 32, no. 4 (2006): 463-470).

But I do think there may be ethical content to intuitionism as a sign or a marker of something important (but obviously not as criterion of the good), and insofar as there is merit to that, the fact that many find the principle of double effect to be intuitivtely appealing may suggest something ethically worthwhile, if not dispositive about the view.  Finally, none of this should be taken as a knock-down, drag-out defense of the principle of double effect.  For an important critique of the doctrine and its application in clinical ethics, see T. Quill, R. Dresser, and D. Brock, "The Rule of Double Effect -- A Critique of Its Role in End-of-Life Decision-Making," N. Engl. J. Med. 337 (1997): 1768-1771.

(Those unaware of the strong historical and conceptual connections between Catholic traditions of medical ethics and early bioethics in the U.S. would be advised to read Al Jonsen's The Birth of Bioethics, and Jonsen & Stephen Toulmin's The Abuse of Casuistry).

The importance of palliative sedation is at least partly that its practice is so conventional, in hospitals all over the U.S. virtually every day.  It has become an accepted part of clinical practice, of end-of-life scenarios, as opposed to passive euthanasia (embodied in Oregon's Death with Dignity Act), and certainly in stark opposition to active euthanasia, the latter of which remains illegal in all fifty states and in most countries aside from the Netherlands.  While there are many difficult legal, ethical, and policy issues that attend inquiries into both passive and active euthanasia, palliative sedation seems easier to grapple with, if only by comparison.  Thus, even though one might well acknowledge the distinctions between palliative sedation, and passive and active euthanasia might, in certain cases, be fine, it does not follow that there exist no substantive differences between them.  The fact that many industrial societies have issued different legal and regulatory responses (i.e., different practices) with regards to each may itself mark the existence of such distinctions, even if teasing them out may be difficult.

Regardless of one's position, thinking through some of these issues is, I submit, an important part of thinking through some of the difficult problems that may arise in end-of-life scenarios.

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Bibliography

Albert R. Jonsen.  the birth of bioethics (Oxford: Oxford University Press, 1998).

Albert R. Jonsen, Mark Siegler, & William J. Winslade.  clinical ethics (6th ed. 2006).

Erin Brender, "Palliative Sedation," JAMA, Vol. 294, no. 14 (2005): 1850.

H. Ten Have, David Clark (eds.).  the ethics of palliative care: european perspectives (Buckingham, UK: Open University Press, 2002).

Joseph Boyle, "Medical Ethics and Double Effect: The Case of Terminal Sedation," Theoretical Medicine & Bioethics, Vol. 25, no. 1 (2004): 51-60.

Robert M. Baird, Stuart E. Rosenbaum (eds.).  caring for the dying: critical issues at the edge of life.  (Amherst, NY: Promethus Books, 2003).

T. Quill, R. Dresser, and D. Brock, "The Rule of Double Effect -- A Critique of Its Role in End-of-Life Decision-Making," N. Engl. J. Med. 337 (1997): 1768-1771.

Levy, S.S., "A Limit on Intuitionistic Methods of Moral Reasoning," The Journal of Value Inquiry, Vol. 32, no. 4 (2006): 463-470.

Shai J. Lavi.  the modern art of dying: a history of euthanasia in the united states.  (2005).  (Princeton: Princeton University Press).

Social Model of Disability

Today's entry in the Lexicon features the social model of disability.  Much of what I have to say here dovetails nicely with the entry on medicalization.

For much of the last two centuries, disability has been understood in social terms according to an allopathic medical model.  By this I mean to say that disabilty has perpetually been defined as a pathology, as a lack, as a dysfunction.  Plato argues in the Republic that one cannot define justice without experiencing injustice, and disability has generally been comprehended in terms of the lack of function that a "normal" person might enjoy.  A person whose foot has been amputated is therefore disabled because they lack the function that a "normal" person with two feet would enjoy in that foot.

Over the last several decades (or even less -- disability studies is quite a young field of inquiry), theorists have begun to challenge this medical model of disability.  They argue, instead, that disability is largely socially constructed, that it is a function of social practices and attitudes rather than actual physical impairment.  What does this mean?

Consider, for example, what the lived experience of disability would be like if every building was accessible to disabled persons, if every bathroom in every building was accessible.  What if every curb had adequate cuts for persons in wheelchairs? What if all public schools provided adequate access to interpreters fluent in sign language? What if all restaurants had menus in Braille?

The point, which to me seems undeniable as far as it goes, is that some of the lived experiences of disability are constructed by the social realities of living as a disabled person.  If, for example, every building was actually accessible to persons in wheelchairs, the limitations resulting from the person's impairment would be profoundly different.  The accuracy of this perspective is apparent in the divergent experiences of disabled persons touring countries with widely different accessibility profiles.  In Great Britain or the Scandinavian nations, for example, which generally spend much more time, effort, and $$ in enhancing accessibility, the extent of the limitations for a disabled persons is likely to very different than, for example, in the U.S. or Japan.

From this perspective, then, the conclusion is that disability is, to some extent, socially constructed rather than defined by medical assessments of impairment.  The parameters of disability are constructed by social practices, and the attitudes and conceptions that inform those practices, more so than by actual physical impairments.

This is a core aspect of the social model of disability, though there are many more features of the model that are relevant.  I will mention two.  First, one of the core features of a medical model is the "fix-it" mentality.  A person comes down with some kind of illness or injury, and seeks medical care to fix the problem.  This is uncontroversial by itself, of course.  But the fix-it mentality, many disability theorists and advocates point out, has caused a very great deal of harm.  Consider, for a moment, what the social impact could be on a person, who, since their early memories, have constantly been told that they are, in essence, less than what they should be, that they are less than whole, somehow incomplete, inferior to others who do not have the impairment(s) at issue.

I can only begin to imagine the incredible pain and damage that some such persons might experience over a lifetime of constant, often painful attempts to "fix" their problems.  Disability advocates have long referred to the realization of the harm inflicted by the fix-it mentality, and of the fact that the mentality is imposed by others (though too often internalized by the disabled person) as "coming out as disabled."  The language is intentional in its resemblance to the process of coming out for gay, lesbian, bisexual, or transgendered persons.  In both circumstances, the individual decides that they no longer will allow others to define the nature of their own impairment, that they no longer will allow their own lived experiences to be defined in terms of a lack, in terms of what they are not, in terms of "abnormality."

All of this is not to deny the profound good that comes from the fix-it mentality of the medical model in general.  If I break my arm, I seek medical care with the abiding expectation and hope that it will indeed be fixed.  My point here is that the fix-it mentality has a dark side as well, and this darkness has historically been visited most frequently on disabled persons.  The rejection of the fix-it mentality plays a part, for example, in the notorious debates over whether it is ethical to allow Deaf parents of a Deaf infant to refuse a cochlear implant on behalf of their infant.  To many, but by no means all, persons who self-identify as part of Deaf Culture, their deafness is not an impairment at all -- it is, they argue, exactly like living in a country whose language you do not speak (Deaf people obviously do possess a language [sign language]; it is just is not one most people "speak").  Accordingly, some Deaf persons see the effort to fix or correct their child's deafness as a continuation of the same rejection and invalidation of the worthiness of living as a Deaf person that characterizes the fix-it mentality.

(I am not here defending this view, but merely trying to explain my own perspective of how some of the views of parents who oppose such cochlear implants might be related to views on the social model of disability).

Historically, judgments of abnormality, of a life defined only by deficit, have had grave consequences for disabled persons.  The eugenics programs of the late 19th-early 20th century had disastrous consequences for disabled persons (the Nazis murdered an estimated 250,000 disabled persons), and the underlying view of the social worthiness of disabled persons is also evident in the properly infamous decision of Buck v. Bell, which contained Justice Holmes's notorious aphorism, "Three generations of imbeciles are enough."

Second, as mentioned in the Lexicon entry on futility, another problematic regarding the social model of disability is the relatively massive body of evidence suggesting that nondisabled persons consistently underestimate the quality of life of disabled persons.  If this is so, it is unsurprising that some disability rights advocates are most concerned about permitting nondisabled persons to make quality-of-life determinations (of futility) for disabled persons in end-of-life scenarios.  This again shows how significant attitudes towards and conceptions of disability are in constructing the lived experiences of disabled persons.

Finally, it should be apparent that the social model of disability is hardly uncontroversial.  While it seems difficult to deny that much of the lived experience of disability is informed and constructed by social practices and attitudes, more than a few disability scholars and advocates argue that to focus solely on the social aspects of disability is to ignore the physical, material impairments that also produce those lived experiences.  Other concerns include questions about the coherence of the community of disabled persons (given such wide variations in both the nature of the impairment and the attitudes towards disability among different cultures and countries), as well as the role of political activism in raising consciousness of disability and of the socialized aspects of disability.

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Bibliography:

The Disability Studies Reader (ed., Lennard J. Davis)

Claiming Disability: Knowledge & Identity (Simi Linton)

Handbook of Disability Studies (eds., Gary L. Albrecht, Katherine D. Seelman, Michael Bury)

The New Disability History: American Perspectives (eds., Paul Longmore & Lauri Umansky)

Disability & Contemporary Performance: Bodies on Edge (Petra Kuppers)

Stigma: Notes on the Management of Spoiled Identity (Erving Goffman)

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.

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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.

Hermeneutics

Hermeneutics is generally defined as the art or theory of interpretation.  The term has wide usage across a variety of disciplines (film, photography, theater, art history, English and/or literature, analytic philosophy, law, sociology, anthropology, political science etc.)  The fact that the term itself seems to be interdisciplinary (or at least is used "interdisciplinarily") might naturally cause the able reader to suspect that it might be of relevance to the medical humanities, and I will try to tease out just such a connection in this post.

So, hermeneutics refers to interpretation.  So? Why is this of consequence? One way to come at this question is to introduce the notion of the hermeneutic circle, as developed by Hans-Georg Gadamer and Charles Taylor (among many others, of course).  The hermeneutic circle refers to the notion that we are in a sense irreducibly "trapped" in a circle of our own interpretations.  How, for example, can one get outside his/her own subject, and/or step outside of his/her own interpretations?

The Stanford Encyclopedia of Philosophy, which has an extensive entry on hermeneutics, explains that

[a]t the end of the day, Gadamer claims, it is not really we who address the texts of tradition, but the canonic texts that address us. Having traveled through decades and centuries, the classic works of art, literature, science, and philosophy question us and our way of life. Our prejudices, whatever aspects of our cultural horizon that we take for granted, are brought into the open in the encounter with the past. As a part of the tradition in which we stand, historical texts have an authority that precedes our own. Yet this authority is kept alive only to the extent that it is recognized by the present. We recognize the authority of a text (or a work of art) by engaging with it in textual explication and interpretation, by entering into a dialogical relationship with the past . . .

The idea, for Gadamer, is that text and reader are "co-determined," as the Encyclopedia puts it, in a kind of hermeneutic circle.  The act of interpreting the text, if it constitutes a search for an objective, timeless, uniquely correct meaning of the text, is the quintessentially fruitless quest.  Interpretation, under this view, is not the search for any such objective, certain semantics of a text.  There are no meanings to texts that exist wholly outside of the practice of interpreting them (if the able reader is detecting Wittgenstein here, I admit that my Wittgenstein Filter is designed to allow large chunks to pass through).

The Stanford Encyc. of Philosophy entry notes that

[a]s important as the interplay between the parts and the whole of a text is the way in which our reading contributes to its effective history, adding to the complexity and depth of its meaning.  The meaning of the text is not something we can grasp once and for all.  It is something that exists in the historical interplay between past and present. 

Of course, these observations, like Gadamer's thought itself, remain deeply controversial in many fields, and I am most familiar with these controversies in the context of law.  If there are no uniquely objective meanings of, for example, the U.S. Constitution, then one might correctly infer that a veritable host of problems and implications tumble forth (*Shameless plug: yours truly has actually written on this subject -- I shan't post a link as that would be too self-aggrandizing even for me, but I will furnish a copy to anyone who actually wants one).  If all is simply interpretation with no objectively correct meanings, how are we to judge which interpretations are sounder than others? (I think there are many plausible answers to this question, but that is not to deny the importance of the question).

Nevertheless, if we take seriously the notion of the hermeneutic circle, of the importance of interpretation as a practice, then the next question is, 'how/why is this relevant to the medical humanities?'

There are many possible answers to this question.  At the outset, it may be worth pointing out that entering the term "hermeneutics" into a PubMed query produces 238 hits, which may suggest that at least some commentators deem the concept itself to have some relevance to the culture of biomedicine.

Quite simply, if the notion of the hermeneutic circle has some validity, it would seem to follow that those who practice medicine do just that -- they practice medicine.  If medicine is actually practiced, then those who practice it would be epistemic interpreters along with the rest of us.  The practice of medicine would be an ineluctably interpretive endeavor, with the intersubjectivity between provider, patient, care team, and caregivers being largely determinant of the meanings and interpretations that structure the illness experience (and, of course, the treatment experience).

Now, I daresay that almost anyone who has taken a patient history might giggle at all of these high-falutin' terms and concepts, because the notion that that history-taking is -- my word!! -- interpretive would seem obvious and trivial.  However, if the practice of medicine is irreducibly interpretive, if there are no objectively correct meanings and interpretations of any particular patient's illness and experience, I tend to think some of the implications of this premise are neither obvious nor evident.

Part of the common criticisms of medical experiences (in the West) is that they are remote, with little attention paid to the particular subject being treated.  The practice is objectified and technologized.  Indeed, in some non-trivial sense, the methodology of medical practice is objectification, to discern the "objective" disease or affliction troubling a given patient, and to apply the treatments that have "objectively" been established as most therapeutic.

(Note: this is not to suggest that the objectifying aspects of medical practice should be tossed out; rather, the point is to suggest some of the consequences of relying so heavily on an objectifying methodology, which, quite obviously, has done a world of good).

The notion that medical practice is interpretive, that there is an irreducibly subjective aspect to the practice itself, is, I tend to think, an important premise with far-reaching implications.

Thoughts?

Aesthetic Model of Literature & Medicine

Today's installment of the Lexicon will explore the aesthetic model in literature & medicine ("L&M").  L&M as a formal scholarly pursuit has only existed since the early-mid 1970s at the earliest, but I tend to think it has contributed richly to the analysis of biomedicine from a humanistic perspective.  Dr. Rita Charon, one of the leaders of the L&M movement, maintains an excellent web resource on all matters L&M at the web site for Columbia University's Program in Narrative Medicine.

Medical Humanities Lexicon: Medicalization

Today's entry in the Lexicon will be "medicalization."  Medicalization is, I tend to think, an important concept in the medical humanities, and has particular application in all manner of fields, including anthropology, sociology, bioethics, disability studies, gerontology, etc.  Though I am not aware of the precise origin of the term, it received its most direct expression in Irvin Zola's 1972 seminal article, "Medicine as an Institution of Social Control."  (1972).  Sociology Review, 20(4):487:504.

As I understand it (and, as always, the Lexicon is irreducibly a product of my own understanding), the term "medicalization" generally refers to the encroachment of culturally (Western) biomedical concepts, terms, and values into a discursive space the boundaries of which need not necessarily be defined in biomedical contours.  This excellent web resource on medicalization defines it as an "expansion of the medical institution and reviewing deviance and the processes of human life from a medical perspective. In the process of medicalization the power of medicine extends to areas which were considered non-medical."

In studying the medical humanities, I have been chiefly struck by a sense of how entrenched medicalization is, such that it becomes difficult to even perceive its wide-ranging social effects and influences.  The study of aging, for example, has been dominated by medical views and attitudes towards aging.  Under the medical model of aging, aging is often seen as akin to a kind of deterioration, of a winding down of cellular processes, accompanied by a concomitant increase in disease, dysfunction, and disorder.  Senescence thus becomes something requiring (medical) management, and its associated breakdowns and malfunctions become forces to be resisted and, to the extent possible, overcome (by the formidable armentarium of biomedicine, chiefly).

Naturally, this is both a polemic and an oversimplified formulation, but it is not, I submit, so crude as to be wholly inaccurate.  A medicalized sense of aging is conveyed quite clearly, for example, in Michael Gazzaniga's recent book, The Ethical Brain.  The problem with the medicalization of aging or senescence is that, of course, there are myriad different ways to view aging aside from a condition of deterioriation and disease.  Indeed, one might, as gerontologists have for some time, begin by even questioning whether senescence is something that should be resisted.  Cicero refuted this conception himself in his famous essay, On Old Age.

As another example, the medicalization of old age commonly produces a conception that older persons are more likely to have rigid, ossified, thought, and are less capable of creativity (consistent with the functional deterioration model of aging).  Why? Why should one believe that older persons are generally less able to think creatively, to generate, as younger persons can? Joan Erikson argues for the concept of generativity in senescence in The Life Cycle Completed.

All of this is ripe for debate, of course, and by asking such questions, I do not pretend to answer them here.  The point is simply to offer an example of the ways in which a particular social conception results from viewing it through "medicalized" lenses, and to suggest that there are a number of social phenomena that merit analysis from gazes that are derived from non-medical milieu.  Regardless of the position one takes, awareness of the medicalization of phenomena that could theoretically be explored through values, concepts, and lenses that are not traceable to the culture of biomedicine is itself significant.  For better or worse, the medical paradigm is so conceptually dominant that it is often difficult to see the ways in which phenomena that are arguably not reducible to medical phenomena are characterized, explained, and conceived of largely in medical terms.

Medical Humanities Lexicon: Principalism

For the first installment of the Medical Humanities Lexicon, I'd like to try to illuminate a basic conception of "principalism."  Of course, any entry in the Lexicon will be nothing more than a crude sketch of the concept under examination.  However, offering a brief introduction, as well as some suggestions as to how any such concept might be relevant to the culture of biomedicine will hopefully prove a worthy endeavor.