Abstract
Ever wished for a comprehensive end-of-life resource worth recommending to your patients, friends, or family? Ever hoped for a more palatable summary that sheds light on the life lessons you have learned while working with the seriously ill?
Katy Butler's newest book, The Art of Dying Well, feels like a compilation of the pearls I have learned professionally and personally. It is a well-researched tapestry of true patient stories woven seamlessly with the advice of palliative care thought leaders. Inspired by her experience as a caregiver for her elderly father, Butler set out to create a modern version of the Ars Moriendi (Art of Dying), a popular death manual written in the mid-1400s that circulated worldwide for nearly four centuries. In the midst of modern life-prolonging technology, Butler reminds us that death was once “domestic and communal, as sacred and as familiar as a baptism or wedding.” Her book is a collective cry of honest voices, encouraging us to think about and prepare for death, so we can live fully until our final breath.
The Art of Dying Well chronicles the facets of aging faced by an older adult: Resilience, Slowing Down, Adaptation, Awareness of Mortality, House of Cards, Preparing for a Good Death, and Active Dying. It is written so that anyone, at any age or stage, could pick up the book and easily find the section that resonates with them. Each chapter opens with a poem followed by the statement: “You may find this chapter useful if you recognize yourself (or someone you care for) in some of the following statements.” Each chapter ends with recommendations on “ways to prepare.” The book finishes with a glossary of common medical jargon, a list of helpful online and community resources, and an index to locate specific topics of interest.
Butler hopes The Art of Dying Well will serve as “a compass and the beginnings of a map” knowing that everyone has a different definition of a “good end of life.” She reviews advance care planning documents and describes the process as an “act of spiritual maturity.” She advises on recruiting medical allies (i.e., geriatricians, physical therapists, palliative care, and house call programs), asking important questions, and identifying local support services.
Butler empowers her readers to find their voices and take control of their lives. She shares the story of Amy, a 51-year-old woman diagnosed with metastatic inflammatory breast cancer. Amy meets with an expert academic oncologist who prescribes a treatment without Amy's input. Instead of accepting this plan as patients are often expected to do, Amy pursues treatment with local providers who put her values and personhood first. She ends up living many quality years. Through Amy's story, and many others, Butler highlights the need for patients and providers to explore and identify what is most important and then rally around a personalized treatment plan.
Butler exposes the fragmentation and inequities of the American health care system as barriers to a good end of life. She acknowledges that patients may not be able to access specialist or caregiver support due to finances, insurance, or location. Even when appropriate resources are available, it may be an “imperfect and impermanent arrangement.” In the face of these challenges, she encourages persistence and creativity. If someone loses a partner, she recommends line dancing. If someone can no longer drive, she recommends GoGoGrandparent, an intermediary to Uber or Lyft that can be requested without an app. Butler introduces a new national movement known as the Villages, which helps older adults age in place through extensive volunteer networks. When a home death is not possible, she suggests ways to make a hospital death more sacred and beautiful. Butler acknowledges many barriers to a “good enough death” but preserves contagious hope that it can still be achieved.
Butler's guide is not perfect. She includes several statements about advance care planning and hospice that may not be true across state lines. Although she does feature many expert clinician voices, her own voice—and bias—echoes. The book is likely to resonate most with the aging Caucasian American adult, with or without chronic illness, who is health literate or has strong family support. Butler's recommendations to limit unnecessary tests, risky treatments, and frequent hospitalizations for the frail elderly are understandable, although they may not apply to each person's unique situation and preferences. The values of younger patients, and those with diverse ethnicities and backgrounds, may not align with these care options. Although bias is certainly present, I do not believe it limits the book's generalizability or importance.
For many who are unfamiliar with or afraid of death, The Art of Dying Well may be an ideal introduction. As a home hospice nurse and inpatient palliative care nurse practitioner, my life's passion is difficult to share with those outside of our field. Regardless of how privileged I feel to be a part of this work and how much insight I have gained, sharing my experiences is often the ultimate conversation stopper. I have a growing stack of devourable “death books” written by our most brilliant and courageous colleagues, but for many reasons, I have never recommended them to my loved ones. The Art of Dying Well reads as if you are sitting on the couch, sipping tea, and listening to the wise words of a trusted friend. Every page is filled with easy practical steps to empower patients and families. With 4.8 stars on Amazon after >120 reviews, I believe that I have found a book worth gifting.