(Cross-posted from Hands and Cities)
(Content warning: discussion of death and intense pain)
This post is an amalgam of thoughts about death, prompted centrally by Atul Gawande’s book Being Mortal.
Gawande’s book describes a lot of different people who are dying, at different speeds, with different kinds of suffering and support. I often found it piercingly sad, in a particular way I associate with death, and with people saying final goodbyes to life and to each other.
But for all the pain and degeneration in the book, the tone still feels somehow “smooth.” Gawande imbues the suffering of his subjects with a lot of dignity; he focuses, often, on what they can still do, and what they love. Most of the doctors and nurses he portrays are competent and well-intentioned.
Beneath this, though, one senses a roiling ocean of pain, confusion, fear, despair, and loss. Here I am reminded of Scott Alexander’s post on death in hospitals, which emphasizes, much more than Gawande, patients who are screaming, attacking doctors, trying to pull out their tubes, being restrained, going actively insane. See also Samuel Shem’s House of God, for a portrayal modern medicine much more macabre and ridiculous and horrifying than Gawande’s (I’ve only read the beginning, but it felt like the first few chapters were enough to get the gist). Anne Boyer’s The Undying — an account of her experience with breast cancer and its treatment — is also more relentless than Gawande in her focus on the pure pain — examining it from a huge variety of angles, searching for some sort of linguistic adequacy. She opens with words from the Iliad: “Not even if I had ten tongues and ten mouths.”
Sometimes, on the comparatively rare occasions when I experience even-somewhat-intense sickness or pain, I think back to descriptions like this, and am brought more directly into the huge number of subjective worlds filled with relentless, inescapable pain. These glimpses often feel like a sudden shaking off of a certain kind of fuzziness; a clarifying of something central to what’s really going on in the world; and it also comes with fear of just how helpless we can become.
(Boyer and Shem are also much more interested than Gawande in the corruptions of the medical system, but these won't be my focus here.)
I don’t fault Gawande the book’s smoothness: the topic is hard enough as it is, and his tasteful writing makes it bearable. And relative to many depictions of human life, this one certainly isn’t short on raw horror. See, for example, his descriptions of the poor-houses to which many elderly people in the early 1900s were confined, and of comparable institutions in India today, which Gawande describes as “as close to a vision of hell as I’ve ever experienced.”
Nor is it short on grisly detail. See, for example, Gawande’s lengthy description of what happens to the body during aging: the loss of tooth enamel, muscle mass, strength, lung capacity, brain size; calcium deposits building in blood vessels, joints, and heart valves; arthritis, osteoporosis, tremors, strokes, dementia; clouded and yellowing eyes, thinning hands, the death of pigment cells in the hair, the breakdown of sweat glands.
Here I’m reminded of Buddhist “Patikulamanasikara” meditation — “reflections on repulsiveness” — in which one enumerates the parts that make up the body (head hairs, body hairs, bile, phlegm, skin oil) in an attempt to overcome lust and attachment. But reading Gawande’s description of aging, I don’t feel repulsed. Rather, I feel a certain kind of tenderness, warmth, and fear for my body and its trillions of cells; this incredible concert of tiny, rapid processes, being born and dying, frantic and earnest and determined, sustaining for years a cloud of something like Joe, moving through the world; warding off pathogens, digesting food, pumping blood; billions of nerves cells firing, the energy burned in taking a walk or lifting a hand or remembering; all of it in a certain sense blind, but still purposeful, still in some sense trying. And eventually, more and more, maybe slowly, maybe fast: failing.
The basic thesis of Gawande’s book is that the modern medical system often makes the end of life worse for the dying than necessary. For Gawande, this happens, broadly, because the system focuses unduly on safety and on prolonging a patient’s life at all costs, rather than on the patient’s actual priorities for the end of their life. As a result, you end up with nursing homes that deny the elderly all autonomy, and treatment recommendations that pursue increasingly small chances of increasingly small amounts of additional life, at extreme costs to a patient’s ability to make the most of what time is left. (Note that this isn’t a story about the financial costs of end-of-life treatment, which are extreme — rather, it’s about whether this treatment even helps the patients whose welfare supposedly justifies it).
Gawande discusses institutions, practices, and evidence that points to an alternative vision — of nursing homes that provide more autonomy; of hospice care that does not prolong life at extreme costs to its quality; and of doctors and families who learn to have hard and honest conversations about what sorts of trade-offs the dying are willing to make as death approaches, and who shape treatment and care to serve that vision.
(One other recurring motif in the book, echoed in articles like “How Doctors Die,” is that the type of treatment involved in attempting to prolong life often makes life not just worse, but shorter as well.)
I was particularly struck by the discussion of hard conversations. A theme in the book is how often doctors and families will avoid really confronting the fact that death is coming fast, and that remaining treatment options (themselves often quite painful and debilitating) are virtually certain to fail. It’s a fraught topic, and the simplest approach to it is to focus on whatever slivers of hope remain, and to err always on the side of the most aggressive treatments.
This focus often works to preserve optimistic misunderstandings. For example, Gawande quotes one oncologist who reports that he is often thinking ‘can I get a good year or two out of this?’, where his patients are thinking ten or twenty. The book quotes a study showing that the average survival time estimate given by doctors of terminally ill patients was 530% too high; and Gawande finds himself subtly and not-so-subtly accommodating his patients’ desire for optimism. Doing otherwise requires effort, courage, and skill.
To aid in confronting and responding to hard truths, Gawande returns often to questions in the following vein, posed to those nearing the end of their life:
- What is your understanding of what’s happening to you, and of its potential outcomes?
- What are your fears if your condition worsens?
- What are your goals if your condition worsens?
- What trade-offs are you willing to make, and not willing to make, to try to stop what is happening?
The task of the care-givers and the patient together is to plot the course of action that best serves this understanding. What the patient values most as their life ends is key here, and reading their descriptions — a woman with metastatic ovarian cancer who wants to make it to her best friend’s wedding, to put her feet in the sand, to be a wife and mother and friend for a just a bit longer; a piano teacher who wants to keep teaching; everyone who wants to be free from pain, and to have more time with their family — I felt again death’s capacity to bring life into focus.
It’s a familiar motif: the patient emerges from the hospital, newly diagnosed, newly short of time, and with new clarity about what really matters, and about the preciousness of what she’s had all along. As a result, her remaining time is charged with greater meaning and intimacy. I think Tim McGraw’s song “Live Like You Were Dying” is actually a pretty good expression of this: “I loved deeper, I spoke sweeter, I gave forgiveness I’d been denying.”
For a long time, one of my guiding goals in life has to been start early on this. To reach the end of my life, and to have learned already, or as deeply as possible, whatever lessons in preciousness and fleetingness and beauty that death can teach; and to have been doing the whole time what I would’ve wanted myself to do, at least in expectation, with those lessons in mind.
Often this feels easiest when I’m alone. Somehow the social world is harder. It’s one thing to recognize the preciousness of life and of our time together; it’s another to hold onto that recognition, and to infuse our interactions with it, amidst the forceful currents of sociality — the habits and uncertainties, the comfortable defaults, the fears and blocks and distances between us.
And indeed, a more vivid awareness of death is no guarantee of intimacy: if it’s hard in everyday life, or around the dinner table at Christmas, or on intermittent phone calls, deathbeds won’t always make it easy. We can miss each other, we can fail to be truly together in this world, even in our final moments. Here I’m reminded of a funeral I once went to, in which even the remarks from the family of the deceased felt to me formulaic and stilted and distant. Part of this, I expect, was the difficulty of expressing things in that public context; but it was also a reminder to me that certain kinds of closeness can just not happen. Deathbeds are no exception.
Still, reading Gawande’s book, and now writing about it, has left me, for now, with some small measure of the consciousness that I think the approach of death can bring. I feel more aware of my body’s fleeting strength and health; my ability to run and jump and walk up stairs; the softness of the clothes on my skin. And I feel, as well, the urgency of certain projects; the preciousness of certain relationships; the shallowness of certain hesitations and pre-occupations; the costs of wasting time. You can’t keep any of it; there’s nothing to hold back for; your life is always flowing outwards, through you and away from you, into the world; the only thing to do is to give it away on purpose, and the question is where and to what.
Thank you for this. I've been wanting to read this book for quite some time, and you wrote a beautiful meditation on it.
Since I was 13, I can't manage to forget that I'm going to die. This brings clarity and purpose, but also pain and anxiety and more. It also made me focus on my work at the price of spending more and better time with my family and my friends. I'm trying to not make the same mistake these days.
I don’t understand this; my understanding of hospice is that life-prolonging treatment is absolutely not allowed while being in hospice care (you have to exit hospice).
I think this could've been clearer: it's been a bit since I wrote this/read the book, but I don't think I meant to imply that "some forms of hospice do prolong life at extreme costs to its quality" (though the sentence does read that way); more that some forms of medical treatment prolong life at extreme cost to its quality, and Gawande discusses hospice as an alternative.
This makes me wonder why there is no religion that says that God is infinitely evil, but has to allow limited non-evil things to exist to maximize possible tortures in the future.