THE SOUL OF CARE
The Moral Education of a Husband and a Doctor
By Arthur Kleinman
262 pp. Viking. $27.
Kleinman, a medical anthropologist and psychiatrist, has crammed two books into one in “The Soul of Care.” You can skip the first one, devoted mostly to his early life and medical training; it’s a bit of a dull ramble. But his writing, clipped and starchy in the opening chapters, comes urgently alive after his wife, Joan, is told in her late 50s that she has early-onset Alzheimer’s. During her decade-long struggle with the disease, Kleinman tends to her while grappling with the moral, social and practical implications of caregiving.
Anyone who has been a caregiver will relate to the unending grind of Joan’s decline, to Kleinman’s exhaustion and to his efforts to keep going. And he’s one of the lucky ones: He has the financial means to hire home health aides and then, when that is no longer possible, he places Joan in a nursing home that’s “well-appointed, in a beautiful wooded setting in hundreds of acres of rolling hills and meadowland. … Her new and last place of residence was a single room with a pleasing view that felt more like a hotel room than a hospital room.”
As he cares for his wife, Kleinman, always devoted to his career, discovers that he must search for meaning and validation in other parts of his life. He learns humility: “Stuff, bad stuff, is going to happen, and often you have no control at all over it.” (His mother says that Joan’s disease has “made him human!”) Along the way, Kleinman becomes increasingly aware of how caregiving has become divorced from medicine; when he tries to tell doctors about the difficulties at home, they ignore him. The profession, he worries, has become so fixated on costs that it has almost forgotten about the patients themselves. In a heartfelt, if slightly portentous, call to action in the final chapter, he writes: “Caring is what is morally and emotionally most at stake in human experience. It is what makes life worth living.”
HOW TO TREAT PEOPLE
A Nurse’s Notes
By Molly Case
277 pp. Norton. $25.95.
If Kleinman’s book leaves you despairing about the quality of care in medicine, Case’s will restore your faith.
Case — a British nurse, spoken-word artist and writer whose poem “Nursing the Nation” went viral several years ago — explains how hospitals assess critically ill patients with the ABCDE technique, checking their airway, breathing, circulation, disability and exposure. She divides “How to Treat People” into the same sections, illustrating what each term means on its most basic human level by dipping in and out of anecdotes from her training and her years on a cardiac unit.
Of breathing, Case writes, “The feel of breath on the fine, peach-skin hairs of my cheek would tell me if this person were still living; sometimes the last breaths come so slow, the only way of catching them is to come in cheek-close and wait for the feel of them.” She spends an entire shift caring for a dying patient, a man with no friends or family, comforting him as his breathing grows shallow and raspy. After he dies, she washes him and gently wraps him in a shroud. Only then does she break, heading for the labor and delivery ward where her sister, Daisy, works: “I fell into her arms, describing in unintelligible gulps how I had just watched a man die.” Daisy comforts her, and as Case is leaving, she “heard the screams of a woman in the final stages of labor in a nearby room,” followed by “the wet cry of her newborn bringing its head to the brim, breaking the surface.”
Threaded through the stories of patients is that of Case’s father, who suffers a stroke, needs emergency heart surgery and ends up on her cardiac ward. His recovery is difficult, and as Case writes about it, she illuminates the fascinating and never-ending loop of care in a hospital: Doctors and nurses tend to their charges for hours, often without a break, then hand them over to the next shift, and on and on and on, shuttling patients as best they can through a balky, imperfect health care system.
SEVEN SIGNS OF LIFE
Unforgettable Stories From an Intensive Care Doctor
By Aoife Abbey
274 pp. Arcade. $24.99.
“I look after people who are at the extreme fringes of existence,” Abbey, an Irish intensive-care doctor, writes. Her patients, if they recover, frequently have no memory of her, even if she has spent weeks or months caring for them: They are critically ill, “temporarily dwelling in another place: sedated and mechanically ventilated.”
Abbey, who wrote the acclaimed “Secret Doctor” blog for the British Medical Association for several years, organizes “Seven Signs of Life” thematically, just as Case does. She names her chapters after human emotions — fear, grief, joy, distraction, anger, disgust and hope — which is fitting, since she is trying to lay bare the complex feelings of people who make life-or-death decisions on a daily basis.
She’s not as adept as Case at stringing together anecdotes, but what Abbey lacks in style, she makes up for in raw power. Sitting next to a dying patient, she writes, “I wondered if he was really looking at me, or just through me. … As I sat there, I went through in my head the only words I have ever known to soothe myself in situations like this. They come from Raymond Carver: ‘And did you get what / you wanted from this life, even so? / I did. / And what did you want? / To call myself beloved, to feel myself / beloved on the earth.’ I say these words in my head like a mantra.”
What Abbey wants us to understand is that doctors too weep and rage, that although they might keep their expressions flat and their voices even, that’s because they’ve been trained to stay cool in high-drama moments, not because they’re cold people. “When you stand beside your relative, with your hand resting on theirs and tell yourself, ‘I hope they pull through — I know they’ll pull through,’ I hope that, too,” Abbey writes. “I am simply hoping that in another room.”