Title: Being Mortal
Author: Atul Gawande
Publisher: Penguin Random House Canada
My rating: ⭐⭐⭐⭐⭐
Who will like it? I found this to be an emotionally heavy book, but that doesn’t diminish its value in any way. Gawande guides us through the realities of confronting the end of life, which I think everyone, young or ageing or in between, should consider.
This book will resonate with me for a long time. I don’t like to think about death on a daily basis, even while listening to the death toll of the pandemic on the radio, without meaning to I distance and shelter myself from it. But Atul Gawande doesn’t shy away from these questions about approaching the end of life. How can ordinary people choose to age without having to choose between neglect and institutionalization? What matters to us most when we reach this stage in life? What are our fears and our hopes, and what tradeoffs maximize our lives? How can our society, loved ones, and healthcare workers support each other as we die? Should physicians come from a position of authority and choose what they believe is right for vulnerable patients — the frail, poor, and elderly — in a paternalistic relationship, or should they dump all the possibilities and information on the patients, for them to make an autonomous decision?
The COVID-19 pandemic only reminded us of problems in how our society deals with our elderly population. It unveiled existing problems, like how our nursing homes are chronically overpopulated and understaffed, where nurses work multiple shifts in various locations, who often are individuals without access to flexible sick leave. We can deal with the ageing as if they are out of sight and out of mind, often compromising human dignity and respect with basic safety. Geriatrics might not be as lucrative as the pace of emergency medicine or the precision of surgery, because old people accumulate a brittle mound of problems that oftentimes do not have a definite solution.
It’s embarrassing that I naively thought retirement homes were kind of a relaxing vacation resort, and walking into the halls of the building that smelled like soap and where light bounced off polished floors wouldn’t be anything like crossing into an alien border where you might never be allowed to leave again, where you only were reminded of old faces and began to wait in boredom. Gawande put it so aptly, “The border guards were friendly and cheerful enough. They promised her a nice place to live where she’d be well taken care of. But she didn’t really want anyone to take care of her; she just wanted to live a life of her own. And those cheerful border guards had taken her keys and her passport.” The need for a meaningful life where we have a degree of autonomy over our decisions is something we all wish for, and we don’t want to be herded like old sheep. We need the dignity of a human being, balancing privacy with community, and daily rhythms and patterns with freedom and flexibility. When debility and dependence arise, society starts ruling out those needs by default. As perfect as the concept of “assisted living” can be marketed, it is difficult to prioritize self-actualization and happiness over safety and security, and it is unmanageable to measure the real quality of life with any validity. It can feel as if nursing homes are designed to be clean and safe but void of anything meaningful we care about, so we just go on surviving in it. As the younger generation, we would much rather know that our parents are in a safe place than be burdened with worry and guilt. In some cultures, the concept of dropping parents off at nursing homes is almost unfathomable, but it is inevitable that at a certain point, old age can crumble our existence, and caring for an older adult can quickly propel into a full-time job of chauffeuring, washing, cooking, cleaning, tracking medications, and helping someone with their most basic needs like using the toilet and getting dressed.
The heaviness of this book cannot be swept under a rug. It was just ink on crisp paper, but I grimaced, worried, and felt my heart speed up and felt scared of not knowing what death meant, and how we could deal with it. There are two kinds of courage, Gawande mentions. The first is to confront the reality of mortality; the second to act on it. Atul Gawande guides me through his experiences gently, with clarity. Initially, I thought about “being mortal” just as the fact that we will die, but we humans are such complex creatures, and as strange as it first sounds, modern medicine has revolutionized the way we die. We have come to a place where we have so much prowess in treating illnesses, that we identify and treat problems one by one, and offer brief and temporary rescue from one thing before the next one emerges, prolonging life. We have choices to make, because defaulting to the most aggressive treatments can mean taking on risks and also carrying a burden of hosts of side effects, and we need to decide how we want to reach our endings. And more, we need to think about how far we go, how much quality of life we’d be willing to sacrifice in treatment, and at what point do we surrender peacefully. Literature has frequently exposed me to themes of mortality, and when I read this part of the book, I thought immediately “Do not go gentle into that good night”. Endings matter, and perhaps more for the people left behind. Do we “rage, rage, against the dying of the light”, or is that naive and selfish blame of a young man watching his father confront death? Is the young man even selfish to think that, or is he human?
Hospice is tough to talk about and it felt like a rock in my stomach when I first read about it. But not accepting the end does not delay it. It instead speeds it up and comes as an unwelcome surprise. That’s why knowing with clarity and confronting these difficult subjects through conversation is important. There’s an art to it, because doctors are not supposed to put on a cape and a hat, painting mirages of the future and calling themselves magicians. Doctors are also not just unloading a truck full of facts and leaving all the emotional work to the patients. They are not curing a conceptual illness and sending someone home, checking them off on a list, but they’re considering the patient as a person. As I kept reading, hospice seemed less like a thud and more like a graceful acceptance of how we can choose to live, instead of just the intruding thought of inevitable death. Even as “death with dignity” — or assisted suicide — becomes popularized, Gawande makes an notable point: “We damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.” We choose how we face death, and we choose how to live when we are still alive, not just on suffering now for some miraculous possibility of permanent recovery. Just reading this book reminds me of how temporary we all are, and how silly sometimes I spend my precious time stuck on meaningless worries instead of meaningful things, for me, or my family, or for the world around me.