Illustrating End of Life Care

Wendy MacNaughton, How to Say Goodbye (Bloomsbury Publishing, 2023. ISBN-13: 978-1639730858).
Book Review by Jess Libow

In her 2023 guide to caring for the dying, How to Say Goodbye, illustrator Wendy MacNaughton implores her readers to look closely. As she explains in the introduction, drawing is one way of doing just that. The same might be said of taking in the richly conceived sketches that fill her brief but poignant book. An account of the lessons that MacNaughton learned during a year-long artist’s residency at San Francisco’s Zen Hospice Project’s Guest House (now the Zen Caregiving Project), How to Say Goodbye depicts dying patients surrounded by loved ones, hospice professionals, and cherished animals and objects. MacNaughton’s illustrations model an ethic of attentiveness that loved ones and healthcare providers alike can draw on when treatment is no longer an option. “All anyone wants,” she insists, “is your presence and to feel you’re paying attention.”

Observation is a crucial skill for both humanistic inquiry and medical practice, and medical humanities scholars believe studying visual art can teach healthcare providers to approach observation as a process of both “discovery” and “care.”1 MacNaughton’s portraits demonstrate that tending to the dying is not simply a matter of providing them with a standardized care protocol, but also about approaching them with curiosity. Desiring to learn from and about hospice patients, she suggests, leads to a higher quality of end-of-life care. “Follow their lead,” she advises. We would do well to follow MacNaughton’s lead. Interspersed amidst the dynamic hospice scenes depicted in the book, her portraits of individual patients represent them with both dignity and vulnerability, vividly conveying their individual identities.

Some of the portraits highlight her subjects’ creativity. An older woman wearing a fluffy pink robe hangs her head with her eyes closed. Knitting needles and yarn lay across her lap. She is, we learn, often “knitting, sleeping, [and] requesting borscht for dinner.” Another older woman sits in a wheelchair with two framed paintings hanging behind her. The accompanying text clarifies that these are her own creations: “Sitting close to her artwork, paintings made from thousands and thousands of tiny beads.” MacNaughton’s illustrations of these pursuits allows us to see her subjects not only as individuals, but as fellow creatives.

Many of her subjects appear to thrive on interpersonal connection. A young woman in a wheelchair, her face hidden by the long blond bang falling from her otherwise short hair, glances down at her phone. Her focus on the phone makes her appear disengaged, but the accompanying text reads, “waiting for her dad to arrive.” The device is merely a stopgap until her father is able to be with her. A middle-aged woman with bright red hair that matches both her blouse and the soda can on her desk is posed at the computer, her gaze on the screen. We learn that she is “writing emails to far away friends” and also that she has been teaching MacNaughton how to swear in French. For her, too, technology bridges the distance. MacNaughton’s additional note about their language lessons indicates the necessity of complementing such remote correspondence with physical presence.

How to Say Goodbye’s spare prose and tenderly crafted illustrations are not only a guide to caring for the dying; they are also a testament to the role that the arts can play when healing is no longer medicine’s goal. The act of illustrating models the deliberate attention that all those who care for the dying can bring to the bedside. MacNaughton teaches readers not only to look death directly in the face but also to endeavor to see the individuality of those who have reached the end of life.

 

References

[1] Alexa R. Miller, “Observation,” in Keywords for Health Humanities, eds. Sari Altschuler, Jonathan M. Metzl, and Priscilla Wald (New York: NYU Press, 2023), 151.

 

Jess Libow is Visiting Assistant Professor in the Writing Program at Haverford College, where she teaches courses on health, gender, and activism in U.S. She is currently working on a book on visualizations of health in American culture.

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