The Soul of Care: The Moral Education of A Husband and a Doctor

Kleinman, Arthur

Primary Category: Literature / Nonfiction

Genre: Memoir

Annotated by:
Carter, III, Albert Howard
  • Date of entry: Feb-09-2020
  • Last revised: Feb-10-2020

Summary

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.  

Commentary

This is a book that is hard to put down: the clear and cogent prose engages, informs, and involves us in Joan’s and Arthur’s experiences. Far more than “a case study,” or an illness narrative, we learn about wider contexts of care and the personal experience of care, especially for a patient with dementia. For years, Kleinman has written about the importance of social, anthropological, and cultural values that surround medical events. As in his widely read Illness Narratives: Suffering, Healing, and the Human Condition (1989), Kleinman weaves several strands of observation, inquiry, and interpretation. We have, of course, the medical details of Joan’s illness and care, but also the deep history of Arthur’s and Joan’s love, marriage, and professional work in China, as well as travels elsewhere. In an entry from his journal, Kleinman expresses his own denial, pain, exhaustion, and how these feelings helped him understand his limits (pp. 160-163). In a more philosophical voice, he writes, “Caregiving is about enduring” (p. 170). Indeed, for him, there is a moral understanding of what care is and should be.

Kleinman writes about current American health care, criticizing the lack of compassion, human relationship, and caring. He sees that evidence-based medicine (with emphasis on numbers) has replaced experience-based medicine. This strand of the book analyzes and criticizes medicine that is high-tech, corporate, reductive, and depersonalizing. He lists four paradoxes in modern medicine: (1) doctors, while under many external pressures, try to do the caregiving that should be central to them, (2) doctors and health policy makers ignore the important contributions to care by nurses, allied health personnel, family, and others, (3) medical education trains care out of doctors, and (4) medical technology (for example, electronic charts), over-use of drugs, business models, etc. separate doctor from patient (pp. 219-224).

Thus, there is the voice of a social critic. In America, many families endure long declines of a family member with little support by medicine, health policies, or communities. We have a stoic sense that self-reliance is the answer to such a burden, without wider social networks, nor has our government been able to provide good care for all its citizens. 

This is an important and valuable book. It should be widely read…and acted upon. Care should be central to our culture and all our relationships, medical and otherwise.    

Publisher

Viking

Place Published

New

Edition

2019

Page Count

262