Being Mortal — What I Understood After My Mother's Diagnosis

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Oct 25, 2022

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A personal reflection on Atul Gawande's Being Mortal — written from the other side of a cancer diagnosis, a year of chemotherapy, and the invisible cost of being someone's primary caregiver.

The Book I Wasn't Looking For

I didn't pick up Being Mortal because I was interested in medical ethics or end-of-life policy. I picked it up because my mother had just been diagnosed with cancer, and I was looking for something — anything — that would help me understand what was happening and what came next.

Atul Gawande's book had been on my list for a while, one of those titles that feels important in the abstract. Reading it in the weeks after my mother's diagnosis made it something else entirely. It became a mirror for an experience I was already inside, one I hadn't asked to be part of and had no idea how to navigate.

I want to write about this honestly, which means writing about both the book and what the book didn't prepare me for. Gawande is a gifted writer and a careful thinker. Being Mortal is genuinely important. It also, like most books about serious illness, is written primarily from the outside — from the perspective of the doctor, the observer, the thoughtful witness. The person on the inside of it, in my case, was the one sleeping in hospital chairs.

What the Book Is About — And Why It Matters

Being Mortal is structured around a central argument: modern medicine has become so focused on extending life that it has lost the ability to ask whether the life being extended is one the patient actually wants.

Gawande makes this case through a series of stories — his own father's illness, patients he has treated, friends navigating the healthcare system with aging parents. He is especially good on the gap between what doctors are trained to do (identify the problem, treat the problem) and what patients facing serious illness often actually need (to be asked what matters to them, and then to have that answer actually heard).

The parts of this book that are hardest to read are the ones where a patient has a clear sense of what they want — to be home, to avoid aggressive treatment, to be able to eat dinner with their family without being in a hospital — and the medical system simply doesn't have the infrastructure to honour that. Not out of cruelty. Out of the particular kind of institutional blindness that comes from optimising for the wrong thing.

The question Gawande keeps returning to is a simple one: what does this person actually want their life to look like? Not "what is medically possible?" but "what makes this life feel worth living to the person inside it?" These questions are not the same. In most healthcare settings, the first gets asked constantly. The second rarely gets asked at all.

What My Mother's Year Actually Looked Like

My mother's diagnosis came without warning — the way these things tend to come. One day things were normal. Then they weren't.

The surgery was extensive. She was in the ICU for several weeks afterward. I learned what it means to live in a hospital corridor — the specific geography of waiting rooms, the rhythms of shift changes, the language you develop for communicating with nurses when you've been there long enough that they know your name. I learned what it sounds like when someone you love is struggling to breathe after a ventilator comes out, and what it sounds like — the specific quality of the exhale — when they manage it on their own.

After that came a year of chemotherapy.

I want to describe what that year was like without making it sound more coherent than it was. It wasn't a journey, exactly. It was more like a constant low-grade emergency with brief remissions. I would wake up early to read research papers on her specific cancer subtype before her oncology appointments, trying to understand enough to ask useful questions. I would sit in treatment rooms for hours, go home and work until midnight, sleep a few hours, and start again. I missed things — social things, professional things, things that mattered to me — without keeping track of what I was missing, because keeping track would have required attention I didn't have.

Gawande writes about how patients with serious illness need advocates — people who understand both the medical situation and the person inside it, who can translate between the clinical and the human. He's right. What he doesn't write about at the same length is what that advocacy costs the person doing it.

There's a term in the research literature for what happens to family caregivers over time: caregiver burden. Physical depletion, emotional exhaustion, social withdrawal, professional disruption. The medical system sees the patient. The caregiver is largely invisible to it. You are there every day, often making decisions under pressure with incomplete information, and the system treats you as a resource rather than as a person who is also going through something.

I don't say this as a complaint about the doctors or nurses — the people we worked with were skilled and caring. I say it because Gawande's book is very good at making the patient visible in a system that tends to reduce them to a diagnosis. The caregiver needs that same visibility, and it's mostly absent.

The Decisions Nobody Tells You About

The part of Being Mortal that I read most carefully — and returned to most often — is the section on how to have honest conversations about what a patient actually wants when a prognosis is serious.

Gawande argues that these conversations rarely happen well in practice, despite everyone agreeing they should. Doctors default to presenting options rather than asking values questions. Patients default to saying they want whatever the doctor recommends, because that feels like the responsible answer. And somewhere in the middle, the actual human being — with their actual preferences about what their life should feel like — gets bypassed.

We had versions of this problem throughout my mother's treatment. After each scan, there were decision points about whether to continue, modify, or stop. The medical information was presented clearly. The deeper question — what does she want her life to look like while she's going through this? — often had to be asked by us, not by the system.

I became obsessed, during this year, with preserving the small things that made her life hers. When she was too weak to maintain her usual independence, we reorganised the house so she could move through it on her own terms. When the treatment side effects made her familiar foods intolerable, we tested alternatives until we found things that still gave her pleasure. When pain limited what she could do physically, we found other ways to mark the day, other small rituals that gave the hours some shape.

These things mattered enormously to her. They were also invisible to everyone except us.

This is what Gawande means when he writes about what patients actually want near the end of life — not grand things, but ordinary ones. Continuity. Comfort. The ability to be a person rather than a case. The medical system is not well designed to deliver this, and recognising that gap clearly is one of the most useful things his book does.

A Year Later

My mother completed chemotherapy. She came through it.

I find myself returning to Being Mortal now with different eyes than the ones I read it with the first time. The first time, I was reading it in real time, using it as a field guide for an emergency I was inside. Now I can read it more slowly, and what I notice differently is how much the book is about the gap between the stories we tell ourselves about medicine and what medicine actually is.

We tell ourselves that modern medicine can fix things. Sometimes it can. We tell ourselves that more treatment is almost always better than less treatment. Gawande's evidence suggests this is often not true. We tell ourselves that a longer life is by definition a better outcome. His patients consistently suggest otherwise.

What I took from the year of my mother's treatment, and what the book helped me articulate after the fact, is something like this: the most important decisions in a serious illness are not the medical ones. They are the human ones. What does this person want their days to look like? What are they willing to endure, and what aren't they? What would make the time they have feel meaningful rather than just extended?

These questions don't have medical answers. They have personal ones. And the people who love the patient are often the only ones asking them.

Who Should Read This

Being Mortal is not easy to read, but it is important and it is clear. Gawande writes without sentimentality and without evasion, which is harder than it sounds when the subject is death.

If you are currently a caregiver for someone with a serious illness: this book will give you language for things you are already experiencing, and it will help you ask the right questions in medical settings where those questions otherwise don't get asked. Read the sections on goals-of-care conversations carefully.

If you are not currently in that situation: read it anyway. Most of us will be caregivers at some point, and most of us will also eventually be patients. The frameworks Gawande offers are genuinely useful in both roles.

What I would add, as someone who has been inside the experience the book describes: the book is more useful if you read it before you need it. The year I was living in hospital corridors was not the ideal time to be developing new frameworks for thinking about medical decision-making. The book gave me what it could. Some of what I actually needed, nobody had written yet.