OWN YOUR CARE

Lee’s primer coaches people with serious ailments (and their families) to be their own medical advocates.

The author, a palliative care physician, addresses patients with severe health problems, advising them on dealing with doctors who may not always be forthcoming with information or cognizant of a patient’s individual needs, urging them to take the lead in making decisions and plans about their health care. She gives readers advice on determining treatment goals, including extending life and staying active versus alleviating suffering; talking about care and end-of-life issues with family members; setting up advanced directives and medical power of attorney; and handling symptoms like the constipation caused by opioid pain relievers (try laxatives) or debilitating fatigue (plan tasks with intermittent breaks). Lee also weighs in on the pros and cons of cardiopulmonary resuscitation when life may no longer be worth enduring the bruising measures necessary to preserve it for a little while longer; coping with burnout among caregivers; and crafting a deathbed legacy, such as a scrapbook or a recorded testament. The book is laid out in lucid, easy-to-read chapters and bullet-pointed sections and presents wide-ranging discussions of every aspect of illness, from the most basic—how debilitated patients “find the bathroom and pull up and down pants and wipe appropriately”—to more philosophical issues, such as how we define a good life. An appendix includes scripted questions for patients and families to ask doctors, covering both nuts-and-bolts questions (“Who can help me obtain handicap accessible modifications?”) and devastating conundrums (“My family cannot agree on what to do next with my loved one. Who can help us?”). Lee’s prose is straightforward, concrete, and easily accessible to laypeople, and she writes with sensitivity about emotional trauma, drawing on her own experiences with the gravely ill (“Without dialysis, she wouldn’t suffer anymore,” agonizes a husband contemplating ending treatment for his pain-ridden wife. “It’s just…we’ve been together fifty-four years, and she’s the love of my life”). Readers will find this a useful, reassuring resource when confronting a sometimes-baffling and intimidating medical establishment.

An informative, empathetic guide to making painful choices.