As we age, most of us will experience a debilitating or life-threatening illness at some point. Two nonfiction books take an unflinching look at this reality while painting a compassionate picture of how we and our health care providers could approach illness and death with more empathy, honesty and courage.
Healing: When a Nurse Becomes a Patient is Theresa Brown’s searingly honest and deeply personal account of her experiences as a breast cancer patient. Brown, a registered nurse with a Ph.D. in English literature, has written and lectured extensively about the American health care system. As a former oncology and hospice nurse, Brown knew that patients often got a raw deal, but only after her own diagnosis did she realize how needlessly cruel that deal could be.
Brown has profound gratitude for her family, friends and medical team, who all supported her as she recovered, but she is also angry. She faced a host of necessary evils during her treatment, including invasive diagnostic procedures, painful surgeries and debilitating side effects from chemotherapy. But in a series of devastating vignettes, Brown also details the many unnecessary evils she endured in a system that favors profit over the needs of the patient: Diagnoses were delayed, questions left unanswered, test results undelivered. She was even forced to negotiate byzantine regulations on her own because her health care providers were stretched too thin to ensure that these basic duties were fulfilled effectively or graciously. Even though Brown was a seasoned health professional with extensive knowledge and professional contacts, she had to fight to be treated humanely. One can only imagine the obstacles less experienced patients must face every day.
Healing is both a moving memoir and a clarion call to action. When health care becomes a profit-making industry, dominated by hedge funds and corporate interests, we all lose. Instead, Brown argues, we must return to a system where meeting the patient’s needs—physical, emotional and social—is the priority.
In The Day I Die: The Untold Story of Assisted Dying in America, anthropologist Anita Hannig takes a different but no less passionate approach to her examination of death and dying in America. After becoming interested in how Oregon’s assisted dying law worked, Hannig embedded herself in a volunteer group that helps terminally ill patients take advantage of the law. She soon realized that the law, with its many hoops and barriers, could be like Henry Wadsworth Longfellow’s girl with the curl on her forehead. When it works, the law is very good. Hannig’s case studies of patients who have enough luck and resources to meet the demands of the statute demonstrate that assisted death can be, paradoxically, life-affirming. Autonomy can be restored to patients who have long been at the mercy of their diseases, and knowing when one will die can be an opportunity for reconciliation, reunion and gratitude.
But when things go bad, the law can be horrid. It is reasonable to have strict conditions surrounding assisted dying to ensure that the decision to end one’s life is freely made. But those conditions can have devastating effects upon patients who desperately want to die but cannot meet the requirements. Patients with ALS, for example, might lose their ability to communicate their assent before the deadline. Advanced Alzheimer’s patients are categorically denied access to assisted dying because they have lost the ability to fully understand their decision. Hannig rigorously details these and other situations in which people’s physical or mental deterioration, lack of resources or sheer bad luck result in a painfully prolonged life and terrifying death.
In her introduction, Hannig acknowledges the anthropologist’s dilemma: The act of observation is an imperfect tool for research, since it can change both the observer and the observed. However, it can also change the reader, since it is impossible to read Hannig’s book without being moved. Regardless of your stance on assisted dying, The Day I Die will make you reconsider how dying could and should be.