This essay is an application of a method of inquiry described in Nathan Carlin’s 2019 book Pastoral Aesthetics. In Pastoral Aesthetics, Carlin correlates four principles of bioethics with four images of pastoral care to provide new perspectives on these principles by offering inquiry that is theologically informed, psychologically sophisticated, therapeutically oriented, and experientially grounded. In the epilogue of the book, Carlin notes that other correlations are both possible and desirable. In this essay, another correlation is presented. Specifically, the author positions the bioethics principle of nonmaleficence with Donald Capps’s pastoral image of the agent of hope by exploring Jean-Dominique Bauby’s The Diving Bell and the Butterfly (1998), a memoir about locked-in syndrome.
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For a brief description of my method, see my blog in the American Journal of Bioethics, titled “A New Role for Religion in Bioethics?” The link can be found here: http://www.bioethics.net/2019/05/a-new-role-for-religion-in-bioethics/. In justifying my method, I realize that some may feel that I have created a straw man depiction of principlism only to knock it down. However, this would be a misunderstanding of my position in that I am critiquing the critics of principlism as well.
Also see Jessica Carle’s (2019) dissertation on pastoral theology and bioethics for a critique of principlism.
In Pastoral Aesthetics, I discuss Paul Tillich’s (1947) method of correlation and, in doing so, I mention in the footnotes that others have critiqued and modified Tillich’s method. Because I wrote the book for two audiences—bioethicists and pastoral theologians—I did not want to overly conceptualize the book, turning off either audience with jargon or fine points. But here, because this article is written for pastoral theologians, I would like to mention two influential commentators on Tillich: David Tracy and Rebecca Chopp. Tracy (1987) offered “a revised correlational model” in response to Tillich’s (1947) model to make the point that the correlation of theology and culture needs to go both ways. In other words, just as culture can and should be used to inform theology, theology can and should be used to critique culture. In effect, this puts theology and culture on equal footing. In the 1980s and 1990s, some theologians worried that Tillich’s model gave up too much ground to culture, perhaps relegating theology to be the handmaiden to existentialism or other forms of secular/modern thought (cf. Hunsinger 1995; Powlison 2010). Chopp (1987) critiqued Tracy’s (1987) model on the grounds that, on her reading, his method seems to essentialize “common human experience.” So, she advanced, as an alternative, “a critical praxis correlation.” Commenting on Chopp’s model, Nancy Eiesland (1994) notes that the aim of a critical praxis correlation is to transform “the social-symbolic order,” including “the dominant practices and principles of language, subjectivity, and politics” (p. 22). Of note, Eiesland (1994) uses Chopp’s (1987) model to offer a liberation theology of disability. I will conclude with some of Eiesland’s insights to provide a final illustration of the implications of the correlation in this article. By using Eiesland’s (1994) appropriation of Chopp’s (1987) correlational method, I intimate that I am not committed to any one way of doing correlation. Indeed, I affirm a spirit of pluralism in terms of potential principles and images to be correlated, as well as understandings of correlation, so as to stimulate creativity and promote freedom.
However, antibiotics will not undo the damage already done to the body.
This is an example of institutional/scientific/medical racism. In other words, racist ideas were built into the assumptions of the research itself, in addition to any personal prejudice a White doctor or researcher may or may not have had. Relatedly, Ryan LaMothe pointed out to me that one could convincingly argue that the healthcare system in the United States is classist because it drives persons and families into bankruptcy due to medical bills. He added that care given to the poor and/or uninsured is often inadequate (e.g., diabetes is not infrequently treated so late in county hospitals that the only remaining option, other than death, is amputation). Like institutional/scientific/medical racism, classism is structural. Thus, the whole healthcare system could be seen to be violating nonmaleficence in a systemic way.
A key term on this topic in research ethics is therapeutic misconception. Therapeutic misconception is when research subjects “fail to understand the purpose and aim of research, thereby misconceiving their participation as therapeutic in nature” (Beauchamp and Childress 2013, p. 133). An example is when a clinical researcher (e.g., an oncologist) presents a patient with an opportunity to enroll in a clinical trial that is testing an experimental drug but in doing so does not clearly explain to the patient that he or she is very unlikely to benefit from the drug, that their participation is intended to help future patients. Of note for readers of this journal, using ideas from Living in Limbo (Capps and Carlin 2010), I coauthored a case report that involved therapeutic misconception in dental research ethics (Flaitz and Carlin 2011).
Lee Butler and Gregory Ellison II pointed out to me that there are limits to, and important critiques of, Capps’s writing on hope. Specifically, Ellison mentioned the insights of Afro-pessimism. While the term may seem defeatist, it is really about struggle, resistance, and resilience and thus is also related to hope, but in a more social and political way than Capps’s writings. However, it is important to note that Capps understood the goals of pastoral care to be congruent with social justice. In seminary, I took a class with Capps titled “Poetry and Care of the Soul” in which he distributed a handout that quoted a line from William Stafford’s poem “Thinking for Berky”: “justice will take us millions of intricate moves.” Capps writes: “Pastoral care seems to me to be an interim sort of enterprise, one that seeks to enhance our sense of freedom from oppression and external control in the here and now as the quest for universal justice takes its agonizingly slow pace. Thus, pastoral care is an ally of social ethics, as the freedom that it seeks to enhance in the here and now is a foretaste of true justice” (these quotations are from an unpublished class handout). Perhaps Afro-pessimism would critique this as a rationalization for not working more directly for social justice. For more on pastoral care and poetry, see The Poet’s Gift (Capps 1993).
In Pastoral Aesthetics (Carlin 2019), I advocate for attention to mundane matters such as these, referring to them, in light of art theory, as “eccentric” considerations. In my usage, “eccentric” does not mean “odd.”
Making a distinction between medical humanities and health humanities, Olivia Banner (2019) suggests that health humanities, in contrast to medical humanities, privileges the perspectives of disability studies.
Others have made this point about idolatry as well (for a recent example, see Duff 2018, p. 13).
Relatedly, I talked with Eugene Boisaubin, an internal medicine physician at McGovern Medical School in Houston, Texas, about what he thinks of the words “hope” and “cure” in a clinical context. Boisaubin, who has written extensively in clinical ethics (and won the lifetime achievement award from Baylor College of Medicine), makes it a point not to hide behind words. He pointed out to me that, in his experience, it would rare for doctors to use the word “cure.” Rather, doctors more often use phrases like “a chance to do better.” He added that in many cases it is not obvious to him what a “cure” would look like in actual practice. Boisaubin also noted that, when he is confident that a patient will do very well after a given intervention—e.g., an intervention to treat a bladder infection, which a patient may have anxiety about if the infection was caused by sexual activity—he will say something like this: “You will get better. This will go away.” Notice that these are very strong and clear words from Boisaubin, intended to inspire hope yet without the language of cure.
In contrast, see Christopher Hitchens’s (2012) Mortality (pp. 15–16).
In “Voyage around my Cell,” Ahmet Atlan (2019) writes about “forgetting” as a great source of freedom, which is an interesting contrast to fantasy. Atlan says that the process of writing helps him to forget; perhaps writing functioned similarly for Bauby. Atlan was arrested in 2016 for alleged participation in an attempted coup d’état in Turkey. He was released on probation in 2019. I’m grateful to Benjamin Saxton for sending this essay to me.
Various happiness studies have found that non-disabled persons consistently undervalue the experiences of persons living with disabilities (cf. Carlin and Capps 2012).
For a congruent pastoral reading of Jesus as embodied, see Finding Ourselves Lost (Dykstra 2018, pp. 116–124).
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I receive royalties from four books cited in this article. These are Living in Limbo, 100 Years of Happiness, Medical Humanities, and Pastoral Aesthetics. Please see the reference list for complete bibliographic details.
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Carlin, N. Nonmaleficence and Hope: a Correlation. Pastoral Psychol (2020). https://doi.org/10.1007/s11089-020-00903-8
- Pastoral aesthetics
- Method of correlation
- The diving bell and the butterfly
- Medical humanities
- Disability studies