Commentary on Excerpts From <i>Never Let Me Go</i>

I work out of an academic tertiary care hospital in Canada as a clinician–educator in obstetrics–gynecology—the so-called “happy speciality,” where death and disease aren’t supposed to happen, but do, irreconcilably. I read Kazuo Ishiguro’s novel Never Let Me Go while completing a master’s in narrative medicine and was struck then, as I am now, at how clearly the novelist articulates basic realities for those involved in medical care. Kathy introduces herself on page one as a model—even enviable—caregiver: She is experienced, skilled, actively engaged with her patients, and adept at responding appropriately to their needs. Her patients have good outcomes, relative to her field, and tend to do “better than expected.” All of this “means a lot” to her. She goes on to say that caregiving has “brought out the best” in her; however, she contrasts her position with the many carers she knows for whom “the whole thing becomes a real struggle” such that they are now “just going through the motions.” She provides a number of reasons why caregivers become demoralized, all of which fit within our existing knowledge of burnout and compassion fatigue. Carers experience long hours, social isolation, sleep deprivation and exhaustion, chronic intimate exposure to the pain and worry of those who are ill, and feelings of personal failure when their patients die or have unanticipated complications.1,2 Kathy notes that she has not been “immune” to any of these issues herself; rather, she says she “learnt to live with” the very real, personal cost of providing care to others. What did Kathy learn, and what can she teach us about sustainable, effective, satisfying careers in caregiving? In the select passages, Kathy illuminates the following five points: (1) It is possible for caregiving to bring out the best in you and your patients, but demoralization is a natural consequence of caregiving because providing care to others comes at significant cost, and caregivers aren’t machines; (2) it is necessary and possible for caregivers to both acknowledge and learn “how to deal with” demoralization and the cost of caring for others; (3) those who do not learn “how to deal with it” become ineffective; (4) feeling for and connecting with those for whom we care is integral to remaining satisfied, sustained, and effective as caregivers; and (5) receiving good care changes the illness experience of the patient. Health care professionals are not educated in the principles of caregiving that Ishiguro lays out in Never Let Me Go. And we should be. We are socialized to see demoralization not as a natural eventuality of caring for others, but as a personal failure. We are not taught to anticipate it, so we are surprised when we or our colleagues battle it. And because we are not instructed in skills to manage caring fatigue or burnout, we struggle more when it happens. In this culture that lacks the language, the means, and the necessary acceptance of an inevitable process, is it any surprise that we keep our distance, remain objective, and struggle to engage with the humanity of our patients or, even, ourselves? Is it any surprise that the current socialization of health professionals is one which trains us to care for our patients rather than care about our patients? In The Wounded Storyteller, Arthur Frank3 writes that “sooner or later, everyone is a wounded storyteller.” Ishiguro’s Kathy knows that she will eventually become a donor, and this changes her approach to caregiving. Our approach could change too, perhaps, if physicians were made to understand the illness experience as well as the disease process, if there could evolve a cultural impetus and an educational process to support physicians engaging with, rather than distancing themselves from, patients. Incorporating narrative medicine into medical education may be one means for advancing such change.4–6 The example Kathy gives us, to keep “feeling for [her] donors every step of the way” as a means of preventing and dealing with demoralization, is particularly paradoxical for those socialized by medicine, which teaches objectivity and distance. Narrative medicine, however, teaches what Kathy knows: that engaging deeply and thoughtfully in the experiences and stories of others can be what sustains us, satisfies us, and enables us to keep on caring. Earning my master’s helped me realize, fundamentally, that caring for others and caring for self are yoked tasks—that they occur through the same processes. This revelation provided both permission and mandate to come back to where I always knew the meaning was for me in medicine: in the relationship. The challenges we face as caregivers, spending so very much time “so close to the pain and the worry,” must be anticipated, acknowledged, and navigated. For helping me understand that I must operate through the lens of my own humanity, that I must engage deeply with those for whom I care, and that caring for others and caring for myself are linked tasks, my thanks go out to Kazuo Ishiguro, Kathy H., Dr. Rita Charon and all my mentors, and to all the patients who have shared their stories with me. Shannon Arntfield, MSc, MD, FRCSC S. Arntfield is assistant professor, Department of Obstetrics and Gynecology, Western University, London, Ontario, Canada; e-mail: [email protected]

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