I was given this best-selling book as a holiday gift last winter. I wanted to read it, but somehow it was easier to deny my fears about aging by ignoring the text. With increasing rapidity, I am losing patients that I have known for decades, and I’m getting used to being asked if I want a senior’s discount at the movies. Last week, sitting with my wife, answering an attorney’s questions about our desires of what we wanted in our living wills, punctuated the reality of life’s finite nature. It was time to read the book.
I have witnessed my father succumb at age 93 to Alzheimer’s disease following a relentless downward spiral over an 8 year time frame, ending quietly in a nursing home. My 29 year-old immunosuppressed brother rapidly deteriorated, expiring from mucormycosis and fulminant hepatitis, while connected to the infinite tubes of the ICU.
Dr. Gawande beautifully details how we have come to care for our elderly, describing the shift in responsibility from the family to the medical establishment. The conceptual and practical development of assisted living facilities is described. I had never realized how these ubiquitous institutions evolved, based on the pioneering work of a few individuals who wanted nothing more than to assure that the elderly have a quality of life beyond “being safe”. He compares and contrasts how death is faced in the ICU versus the home or hospice, and clearly notes how the medical complex may literally rob us of one of life’s most important gifts – how to die on one’s own terms, be it leaving a legacy to one’s family, final wishes, instructions, or just expressing love, gratitude, or faith. He describes his experience with his own father who developed a spinal astrocytoma, and how the senior Dr. Gawande made his choices about when to have his operation, which physician to choose (based on trust, listening to the elder Dr. Gawande’s desires, and working out a mutually agreeable plan) and handling his ashes following cremation.
The essence of the book, however, is in this passage: “The terror of sickness and old age is not merely the terror of the losses one is forced to endure but also the terror of isolation. As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world – to make choices and sustain connections to others according to their own priorities. In modern society, we have come to assume that debility and dependence rule out such autonomy.” He describes several examples of people who show that it is possible to set the agenda for living.
While sitting with my mother-in-law at her facility on Long Island this weekend, I told her about this book. Fortunately, she maintains her independent spirit despite her physical frailties. She is at an institution that is engaging its occupants in a meaningful way (offering religious services, lectures, and such), but the fact remains that it is not her home, where she would love to be. My 95 year-old mother is still living in the house I grew up in, continually climbing up and down the stairs (she says that’s her exercise). I am grateful that my brother lives with her, yet she too feels lonely and confined (we demanded that she handed over the car keys three years ago – maybe we’ll get her a driverless Google Car on her hundredth birthday).
Both mothers have been subject to what Dr. Gawande calls the ODTAA syndrome – One Damn Thing After Another. Indeed, for many, if not most, death comes by “wear and tear” of our organ systems, with its multiplicity of complications, with visits to several specialists as a consequence.
The adage “growing old ain’t for sissies” has been attributed to Bette Davis. It is another way of saying that it takes courage to grow old. Dr. Gawande reminds us that courage must be forthcoming from several directions: the fortitude to let go when medical intervention may be more detrimental than palliation, the strength to allow the soon to be deceased to fulfill the desires of their final days, and the resolve of society to seek innovations improving the quality of life for our most venerable citizens.