I feel like everything I’m really interested in is fairly taboo. I love talking about (and spent years studying) childbirth, breastfeeding and sex ed…pretty much all topics that most people are afraid to touch. So to be honest, this felt almost like a natural extension of those interests. I’m really glad that I spotted this audiobook on the shelf the last time I was at the library because it was a captivating look at a topic that is completely under-talked about.
“Our ultimate goal, after all, is not a good death but a good life to the very end.”
This book is an exploration of the way both doctors and ourselves deal with the deterioration of health, and eventual death, that we all must face. Whether it be from an unexpected terminal illness at a young age to the expected decline we all see as we reach old age, Gawande talks about how the priorities of medicine may not be in line with the priorities of humanity. And he explores how our collective inability to face the idea of death prevents the majority of us from ending our lives in control, the way we want to. Through stories, examples, and experiments both personal and otherwise, Gawande shows us how the end of life for the infirm usually looks, as well as how it could look. He talks about studies done to improve quality of life in nursing homes, the advent of the concept of assisted living, the current and potential uses of hospice care, and personal stories of friends, family members (his grandfather, his wife’s grandmother, his own father) and patients, among other examples, to illustrate his points and theories. He comments on our own discomfort in thinking or talking about “the end,” and how that leaves us completely unprepared to face it when it comes. And he talks about the failure of medical education to prepare doctors to help us face the inevitable and make the best decisions for ourselves and our loved ones when the time comes. In fact, he uses himself as examples in both cases, which is both commendable and fascinating.
I really enjoyed some of the smaller points discussed within the larger framework. For example, we all want to believe the fantasy that we are ageless and that doctors can fix everything, which, along with doctors’ training being primarily in exactly that, we are now facing a dearth of physicians capable of helping the elderly effectively “manage” the unavoidable decline…there is no cure for old age. I loved the discussion of dependency that is included. Gawande really shows us that as we age, it is not the loss of our own functions, of death, that scares us the most (usually), but the loss of our ability to make our own decisions. The loss of independency, of a reason to live, of autonomy; when safety and the prolongation of life become more important than the quality of that life – that is the real fear. The plagues of old age (as identified in this book: loneliness, boredom, helplessness) lead to the loss of a reason greater/beyond oneself for living. Relatedly, the look at perspective, that the amount of time you have left in your life really changes what is important to you, is so interesting and really further emphasizes how important it is to let people make those decisions for themselves when they reach those different stages of life. Each person knows best what matters to them, but these wants/goals of the patient are rarely ever discussed or spelled out. I was also really absorbed by the point that we, and our care providers, always seem very concerned about the dangers of doing “too little,” but almost never concerned by the possibilities of equal or greater harm from doing “too much.” Is it better to potentially shorten a life or decrease quality of life by trying too much treatment? Or is it better to look past simply elongating life and look the quality of the remaining time as a more primary motivator? The exploration here of what hospice care can do to that end, and what it currently looks like in practice, was one of my favorite parts.
Honestly, this book is one I really recommend. Having worked both in an assisted living facility and on an ICU unit in a major hospital, something I have really seen a lot is people who are unable to face the thought of death. The repercussions of this, on the physical and emotional well-being of everyone involved, can be devastating and long lasting. And though it’ll never be easy, it is something we can make less horrible. It’s something we need to brace ourselves for and think about because it’s literally unavoidable. Gawande does a great job talking about so many aspects of the journey towards our own mortality, from multiple perspectives, and we all (personal, patient, doctor, and loved ones alike) would benefit from considering the questions he poses. When we eventually face the situations he is presenting here, what will be important to us? And how can we first respect, and then help those around us find and achieve what is important to them?