Text: Health Care Ethics USA

Literature Review - "It's Time: Narratives of Illness, Aging, and Death" by Dolores L. Christie

Summer 2021
By:

Reviewed by Tobias Winright, Ph.D.

For my undergraduate course on Catholic bioethics and health care ethics, in addition to the Ethical and Religious Directives for Catholic Health Care Services1 and the popular textbook Health Care Ethics: Theological Foundations, Contemporary Issues, and Controversial Cases2, I assign books for students to read providing narrative accounts of patients who are ill or dying as well as their family and friends who are at their bedside and having to make decisions on their loved one's behalf. Over the years these memoirs have included Marilyn Martone's Over the Waterfall, Victor Lee Austin's Losing Susan: Brain Disease, the Priest's Wife, and the God Who Gives and Takes Away, and Kate Bowler's Everything Happens for a Reason: And Other Lies I've Loved.3 I believe such experiential stories matter for my students, both because many of them intend to pursue careers as health care professionals and because all of them will, if they have not done so already, find themselves and their own loved ones facing such life and death events and the questions that arise, ranging from decisions about forgoing extraordinary treatment to heartfelt cries about the meaning of suffering. Simply put, such personal accounts serve to remind my students and me that health care ethics involves not only applying principles but also accompanying persons — and that all of this is not always (although sometimes it is) as clear-cut as perhaps we may suppose.

Recently I added Dolores L. Christie's It's Time: Narratives of Illness, Aging, and Death to our assigned reading list. A Catholic theologian and bioethicist, Christie possesses many decades of experience teaching in the college classroom and serving as a clinical ethicist. Before retiring from John Carroll University, she was also executive director of the Catholic Theological Society of America. A gregarious presence at that Society's annual convention (as well as at the annual meeting of the Society of Christian Ethics), Christie's warm and occasionally humorous prose is engaging and evocative.

As its subtitle indicates, the book contains narratives. In my own nearly quarter-century of teaching experience, undergraduates mistakenly tend to assume that narratives, or stories (and they often refer to any book, whether non-fiction or fiction, as a "novel"), are fictional and, therefore, non-factual and untrue. Anticipating such an objection, Christie emphasizes that It's Time is comprised of "true" stories, both fictional and from "real situations," including her own.4 For Christie, such narratives "captivate our imagination," but rather than replace or substitute for principles, these stories instead "embed in us values and norms," and "tend to determine and limit how we think about and prioritize values."5 Accordingly, and in sync with my own aforementioned objectives for students, Christie hopes: "Professionals in training might learn something that will allow them to see their patients more as people with value and values, rather than medical problems to be solved."6 In my view, as such, Christie's book contributes to the ongoing trajectory initiated by Paul Ramsey in his 1970 benchmark book, The Patient as Person, which was aimed "to patients as persons, to physicians of patients who are persons — in short, to everyone who has had or will have to do with disease or death."7 And that's all of us persons, from patients and prospective patients to professionals and practitioners who are prospective patients, as well as to the coterie of loved ones and other health care providers. So, Christie's book is not limited in scope only to principles and physicians — a welcome addition to my syllabus, I think (as do my students, judging by their own assigned reviews of it).

Divided into three sections containing chapters that focus respectively and respectfully on the human experiences of illness, aging, and death, the book also includes two appendices: Appendix A delineates "A Process for Making Decisions," which is an abbreviated and more health care version of her chapter "The Process: Steps for Moral Decision Making" from her 2013 Moral Choice: A Christian View of Ethics8, and Appendix B provides helpful "Questions for Discussion" for each section's chapters.

Section One has six stories about persons — some young, some not — facing chronic and terminal illnesses. Whether diagnosed with anorexia, ALS, cancer, or early-onset dementia, these persons and those accompanying them attempt to navigate their way through dealing "with reality." Christie excels in considering multiple facets within each story and each medical condition, as well as raising possible conflicts of goods and goals among all involved. Lengthier and more fine-grained in detail than typical textbook case studies, these stories bring to the fore some "hard choices" that may have to be made. For example, "Impotence" is not about what a reader might expect. Instead, it is about a man with ALS who, after getting seriously injured in a car accident, is placed on a respirator and finds himself unable to communicate to his wife Mary: "No, no. This is not what I wanted! The progression of the ALS and now the breathing apparatus make it impossible to speak. How could I tell them? Clearly Mary was reluctant to own the decision to remove the respirator … My advanced directive — the doctor had suggested that I sign one early in the disease — said only that I did not want ‘extraordinary measures' taken, but the standard form added the words, ‘if I were near death.'"9

The six stories of Section Two are about aging. One of the things that stands out is that healthy aging and increased longevity may actually involve more experiences with death. That is, along the way many friends, coworkers, and relatives about whom we care succumb to accidents, illnesses, or old age. Something Christie brings to light is the loneliness and deep loss felt by the elderly. A particularly difficult story for me to read is about an unmarried professor who has just retired, who already misses his students and colleagues, and who in the emptiness of his apartment goes to the medicine cabinet and decides "It's time."10 In some stories, Christie shifts attention to the children of aging parents and the difficult decisions they must undertake about assisted living facilities ("A Visit to Sunny Hill") or hospices. "It is hard — sometimes heroic — to care for the elderly. But then the understudy takes on the role herself: she is the elderly. Pogo had it right!"11

In Section Three's five moving stories, Christie invites readers to ponder the universal, inevitable reality of death. From 103-year-old Emma who is shown exquisite love and care by her family and who dies peacefully at home ("The Birthday Party") to Mary Ellen who is actively dying, "weary of the battle," and hopes "never to be a burden," so she invokes her advanced directive ("Last Rites). The stories compel us to ask ourselves about how we have lived our lives and how we will ultimately say goodbye. In her final chapter, now that she is in her eighties, Christie reflects on "Saying Goodbye" and offers her own advice to readers about preparing for the end, whether "death may surprise us and come without warning" or we "move gradually ‘into that good night' preceded by months or … years of erosion from disease."12 It's a bucket list, of sorts, closing with her sage counsel to say "unspoken things" such as "I'm sorry" and "I love you," as well as "goodbye" to the "body in which we live," which no matter what we try to do (exercise, vitamins, medical procedures) "has its way."13

As a student of Protestant ethicist Stanley Hauerwas, who is associated with narrative theological ethics14, I appreciate Christie's creative effort inviting readers to find themselves both engrossed by and, in many respects, embedded within these stories. I also commend her emphasis throughout on what Hauerwas referred to as being a "suffering presence" with the sick and dying.15 Of course, other Catholic ethicists besides Christie acknowledge the importance of narratives. Joseph A. Selling, for example, admits, "Narrative should be an integral part of any ethical discourse."16 Yet, as Richard A. McCormick, S.J., who was one of my other teachers, has noted, while narrative ethics makes a much needed contribution in broadening our vision and shifting our attention to being and character, it falls short with regard to problem-solving and deciding what ought to be done.17

Christie herself has devoted attention elsewhere to the incompleteness, limits, and problematic biases of narrative, and she uses double effect reasoning and other principles in that work, too.18 Indeed, even throughout It's Time, bioethical terms and principles surface, such as "advanced directives" and "extraordinary measures," "suicide" and "letting die," "hospice" and "palliative care," "terminal sedation" and "appointed durable power for health care." But Christie leaves it to her readers to try to figure out how to apply these concepts immersed within the context of these stories.

One story, though, differed from these others. In "This is My Body," which is truly a fine piece of creative writing, Christie expresses a more negative impression of moral principles and bioethics. The story is about a "dying priest [who] lingers in an irreversible coma" and the withdrawal of his ventilator. Christie writes: "The experience of a month's vigil showed me this truth. It no longer seems fitting to address the moral rightness of such an action without emotion, to speak in theories and with academic weight, to write reality into careful casuistry. Rather, it is much more appropriate to recount what was seen and heard at the bedside of this dying priest, and to tell the deeper story of a final Eucharist."19 Her point is well taken; yet, I wish she had made it in a less either/or (either utilizing moral principles such as ordinary/extraordinary treatment or being present and telling a deeper narrative) way. Aren't both appropriate so long as they are done together? In short, narratives are necessary but insufficient, just as much as principles are necessary but insufficient.

In the end, Christie's book of narratives interfaced nicely with Panicola et al.'s textbook Health Care Ethics, which similarly, even while utilizing principles, seeks to facilitate the consideration of "what right relationships require and what leads ultimately to human flourishing."20 This normative basis "does not function like a mathematical formula" or "always get a single, definitive answer."21 But their focus on the subject, the person who is not reduced to merely an individual, does not necessarily entail subjectivism and relativism either. Indeed, the norm of the flourishing human person is foundational for Christie, too.

After all, nestled within one of the book's narratives, Christie inserts a brief critique of the illusory "American paradigm" of the "rugged individual" (which I would note is a problematic limited, biased narrative22), and she mentions the twentieth-century moral theologian Louis Janssens who emphasized that "we are inexorably connected to one another, agreeing with John Donne that no man [or woman] is an island."23 Janssens is credited with being behind Vatican II's emphasis on the dignity of the human person in Gaudium et spes.24 Indeed, the official commentary unpacked this norm using Janssens' exact wording, the "human person integrally and adequately considered."25 In my view, Christie honors Janssens with her eloquent and effective use of narratives for readers to better attend to persons, more integrally and adequately, as they become ill, age, and die.

Tobias Winright, Ph.D.
Associate Professor of Health Care Ethics
Associate Professor of Theology
Albert Gnaegi Center for Health Care Ethics
Saint Louis University

tobias.winright@slu.edu

ENDNOTES

  1. United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services, 5th ed. (Washington, DC: USCCB, 2009), http://www.usccb.org/issues-and-action/human-life-and-dignity/health-care/upload/Ethical-Religious-Directives-Catholic-Health-Care-Services-fifth-edition-2009.pdf.
  2. Michael R. Panicola, David M. Belde, John Paul Slosar, and Mark F. Repenshek, Health Care Ethics: Theological Foundations, Contemporary Issues, and Controversial Cases, rev. ed. (Winona, MN: Anselm Academic, 2011).
  3. Marilyn Martone, Over the Waterfall (Middletown, DE: Marilyn Martone, 2010); Victor Lee Austin, Losing Susan: Brain Disease, the Priest's Wife, and the God Who Gives and Takes Away (Grand Rapids, MI: Brazos Press, 2016); Kate Bowler, Everything Happens for a Reason: And Other Lies I've Loved (New York: Random House, 2018).
  4. Dolores L. Christie, It's Time: Narratives of Illness, Aging, and Death (Eugene, OR: Cascade Books, 2019), xiii.
  5. Ibid., xi, italics original.
  6. Ibid., xv.
  7. Paul Ramsey, The Patient as Person: Explorations in Medical Ethics (New Haven: Yale University Press, 1970), xliv.
  8. Dolores L. Christie, Moral Choice: A Christian View of Ethics (Minneapolis, MN: Fortress Press, 2013).
  9. Christie, It's Time, 6-7.
  10. Ibid., 65.
  11. Ibid., 49.
  12. Ibid., 112.
  13. Ibid., 117.
  14. Stanley Hauerwas, A Community of Character: Toward a Constructive Christian Social Ethic (Notre Dame, IN: University of Notre Dame Press, 1981), 9-10. See also Stanley Hauerwas and L. Gregory Jones, ed., Why Narrative? Readings in Narrative Theology (Grand Rapids, MI: William B. Eerdmans Publishing Co., 1989).
  15. Stanley Hauerwas, Suffering Presence: Theological Reflections on Medicine, the Mentally Handicapped, and the Church (Notre Dame, IN: University of Notre Dame Press, 1986).
  16. Joseph A. Selling, Reframing Catholic Theological Ethics (Oxford: Oxford University Press, 2016), 46.
  17. Richard A. McCormick, S.J., "Moral Reasoning and Storytelling," in Notes on Moral Theology: 1981 through 1984 (Lanham, MD: University Press of America, 1984), 121-128. In addition, James M. Gustafson identified four modes of moral discourse in bioethics: ethical, policy, prophetic, and narrative. See James M. Gustafson, Varieties of Moral Discourse: Prophetic, Narrative, Ethical, and Policy (Grand Rapids, MI: Calvin College, 1988), and Intersections: Science, Theology, and Ethics (Cleveland, OH: Pilgrim Press, 1996). Lisa Sowle Cahill, who like Hauerwas was a student of Gustafson, has added a fifth: participatory discourse. See Lisa Sowle Cahill, Theological Bioethics: Participation, Justice, and Change (Washington, DC: Georgetown University Press, 2005).
  18. Christie, Moral Choice, 35-38.
  19. Christie, It's Time, 108.
  20. Panicola et al., Health Care Ethics, 75.
  21. Ibid., 61.
  22. See Roger G. Betsworth, Social Ethics: An Examination of American Moral Traditions (Louisville, KY: Westminster/John Knox Press, 1990).
  23. Christie, It's Time, 22; she also alludes to a visit with him on 118. Janssens is highlighted, too, in her book Moral Choice, 127. Her dissertation was on Janssens' moral theology; see Dolores L. Christie, Adequately Considered: An American Perspective on Louis Janssens' Personalist Morals, Louvain Theological and Pastoral Monographs 4 (Louvain: Peeters, 1990).
  24. Selling, Reframing Catholic Theological Ethics, 145.
  25. For the commentary, see Schema constitutionis pastoralis de ecclesia in mundo huius temporis: Expensio modorum partis secundae (Vatican City: Vatican Press, 1965), 37-38. For more on it, see Richard A. McCormick, S.J., Corrective Vision: Explorations in Moral Theology (Kansas City, MO: Sheed & Ward, 1994), 14; and Selling Reframing Catholic Theological Ethics, 133. For Janssens' use of the phrase, see Louis Janssens, "Artificial Insemination: Ethical Considerations," Louvain Studies 8 (1980): 3-29; and Louis Janssens, "Particular Goods and Personalist Morals," Perspectives 6, no. 1 (1999): 55-59.