Medical Humanities Book Recommendations from a Seriously Ill Philosopher
Adam Hayden
I am thrilled to reflect on a few books falling within the remit of medical humanities. In this post, I share thoughts on books from my area of interest: the philosophy of medicine. The following books have helped my attitude toward accepting a serious illness and informed my own research.
Havi Carel, a professor of philosophy, co-principle investigator for the Wellcome Trust funded research project, Life of Breath, and person living with chronic illness observes in her excellent book, Illness: The Cry of the Flesh (2008), that “when I began to give talks on illness, my position was never quite clear to the participants. Is she a patient or an academic?” Carel continues, “It somehow seemed to make a difference” (51). Shortly after being diagnosed with brain cancer (glioblastoma) in June 2016, I struggled with a similar tension framed by “standpoint” or “positionality” that Carel raises in her seminal work. I completed requirements to earn my master’s degree in philosophy while undergoing active cancer treatment. I continue to give talks at conferences and in medical education settings, negotiating the space between academia and patient advocacy.
In Illness and later, The Phenomenology of Illness (2016), Carel carefully narrates her illness experience equipped with a theoretical framework offered by a method of philosophical inquiry called phenomenology. A foil to the reductionist-leanings of biomedical research and clinical care, Carel does the heavy lifting to show why phenomenology and its commitment to subjective experience is a complement—if not a challenge—to the value-neutrality that is often prized by clinicians for biomedicine’s commitment to objective lab values and biomarkers. Palliative medicine physicians and practitioners should find Carel’s work especially powerful for its tacit endorsement of biopsychosocial models of care.
Continuing the philosophical analysis of medicine, I enjoyed Jacob Stegenga’s recent introductory text, Care and Cure: An Introduction to Philosophy of Medicine (2018a). Stegenga organizes his text for use in undergraduate classrooms, graduate-level seminars, and for medical educators, his text could be incorporated into medical school curriculum to introduce philosophical considerations underpinning the contemporary practice of medicine. Stegenga analyzes important concepts like health and disease, and he describes medical inference and reasoning.
Stegenga is known in philosophy of medicine circles for his work on ‘medical nihilism,’ which he treats in a book of the same title (Stegenga 2018b). Medical nihilism is a cluster of skeptical views that challenge medical practice, summarized in this Scientific American discussion of Stegenga’s book. Medical nihilism challenges medical interventions finding their benefit may not exceed risks and many have otherwise small effect sizes. Medical nihilists implicate general screening protocols for their role in overdiagnosis and overtreatment. Medical nihilists also worry about two related phenomena: first, that some diseases may not be “genuine,” in the sense that normal aspects of human life are “medicalized,” and second, that diagnostic criteria are weakened over time to allow risk factors to be treated as the disease itself, called ‘disease creep.’
When I read a BMJ op-ed discussing Medical Nihilism, I immediately called to mind The House of God (1978). Not only did the central thesis of this residency cult classic age well, do as much nothing as possible, the visceral language and oppressive environment reminds me, a patient of the system, that an adversarial, us-vs-them, physician-patient dynamic is wrongheaded. Patients and clinicians should instead lock arms and raise shared concerns against the healthcare system.
My strong support for this idea of patient-clinician solidarity is influenced by medical doctor Victor Montori’s Why We Revolt (2017). I attended Montori’s masterclass at Stanford University’s Medicine X, where we took a deep-dive into a critique of industrialized healthcare, to borrow Montori’s phrase. Why We Revolt is a pocket-sized page turner that seamlessly blends quips, essays, one-liners, and biographies, each presenting a new insight that Montori has learned from his experience caring for chronically ill patients in his practice as an endocrinologist.
Clinician narratives stand to teach us all something about healthcare, and I found many lessons in neurosurgeon Henry Marsh’s memoir Do No Harm (2015). Marsh expands on themes with greater detail in his subsequent book, Admissions (2018), but it was the former book that offered the greatest insight into my own experience with brain cancer. After surgery, I was struck by the juxtaposition that my awake craniotomy and surgical resection of my 71mm right parietal lobe brain tumor was a single event to dramatically alter my life trajectory, yet this case was one of hundreds my neurosurgeon performs annually. Marsh provided me with the clinical perspective to view my case from the other side of the blade. Do No Harm is an episodic walk through disease-specific cases, with a range of clinical outcomes. Marsh pulls no punches in discussing his own surgical errors and complications. His is an honest look at this impossibly complicated specialty.
My list of influential books would be egregiously incomplete without discussion of chief neurosurgical resident Paul Kalanathi’s When Breath Becomes Air (2016). Equal credit is due to his spouse, Lucy Kalanathi, herself an influential medical doctor, speaker, and educator. In her TED Talk, Lucy shares that clinicians must understand the experience of illness, not only the technicalities. I quote this poignant line from Lucy to open many of my invited talks.
Writing in the Foreword to When Breath Becomes Air, Abraham Verghese remarks, “see how brave it is to reveal yourself in this way” (xix). I approach my own writing with the brave vulnerability modeled by Paul. After my diagnosis I recommended to friends and family that we each read Paul’s important book, and through shared vocabulary and experiences gleaned through reading, Paul posthumously guided our family’s coming to grips with advanced cancer. More than advanced disease, Paul’s book reminds readers that medical intervention must align with patient values: “Before operating on a patient’s brain,” Paul writes, “I must first understand his mind: his identity, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end” (58). Fellow patients take heed: medical intervention must always be weighed against values: to what extent will a treatment enhance or extend our lives, and at what cost to our quality of life?
Tilted against the bookends on the bookcase in our bedroom are many other influential titles but discussing these will have to wait!
Adam Hayden (@adamhayden) is a philosopher, writer, advocate, and organizer for the brain tumor community. Diagnosed with glioblastoma in 2016, Adam has published on issues germane to medical education, cancer survivorship, and the philosophy of illness, in both popular and academic press. His personal blog, Glioblastology, is a popular peer-to-peer resource and is in syndication with Cancer Health magazine. Adam co-moderates a monthly brain tumor social media Twitter chat, and he co-facilitates a monthly virtual support group for the brain tumor community. He is a co-investigator for the Brain Cancer Quality of Life Collaborative to investigate palliative care intervention for people diagnosed with brain cancer. Adam is an American Association for Cancer Research scientist-survivor program participant, a Stanford Medicine X ePatient scholar, and he is a speaker for the 2019 End Well Symposium. Adam offers a unique perspective on the end of life, as a young dad and husband, facing a life-limiting illness. He and his wife, Whitney, post about their experiences across social media using the tag #AandWTumorTakedown.