On Meaning and Mortality

“You live longer only when you stop trying to live longer,” New America board member Atul Gawande writes in his book Being Mortal: Medicine and What Matters in the End. Coming from a surgeon, it’s a strange pronouncement—but, as Gawande explains, while modern medicine has redefined possibilities for care, it remains restricted by a singular preoccupation with prolonging life. A meaningful life, he says, can be achieved only if we come to terms with our own limits—and reshape our healthcare system to honor patient dignity and agency at the end of life.

Published five years ago, Being Mortal remains a bestseller. We spoke with Gawande about the book’s abiding relevance, developments in healthcare and palliative care, and prioritizing both quality and quantity of life. A lightly edited transcript of our conversation is below.

What problem did you set out to address in Being Mortal, and is it still relevant today?

The problem I set out to address came out of my personal experiences as a clinician and as a son, when my dad developed a tumor in his brain stem and spinal cord. I was a surgeon with a primary practice in cancer surgery. One becomes a surgeon in order to fix things, yet I struggled perennially with what it meant to be competent when faced with an unfixable problem. Surgeons can default to reaching for heroic treatments that often leave people worse off instead of better. Too often there was a failure in planning, and in our ability to transition from heroism to also serving quality of life when needed.

I ended up learning that the problem was much bigger and simpler than I thought. With our average lifespan almost doubled in the last century, what started out as a problem around care at the very end of life became a larger question about how we enable a good life for people—when all of us will spend a significant part of it dealing with loss, chronic illness, and disabilities.

How can we ensure purposeful and meaningful experiences for those facing the end of life?

The key lesson I learned—and I’m embarrassed that it took 200 interviews with patients, families, geriatricians, hospice workers, and nursing home directors—was that people have goals in their life besides just living longer. The most effective way to learn what people’s priorities are is to ask them—but it turns out we don’t ask.

Less than a quarter of the time do clinicians, caregivers, or families ask about priorities ... The result is suffering at a massive scale, higher costs, and care that doesn’t actually succeed in extending life.

People who have been asked those questions and receive care aligned with their answers have been shown to have better quality of life and equal or longer quantity of life—and the costs tend to be lower. It’s a clear triple win.

You mention in the book that there aren’t enough new geriatricians entering the field to handle the rate of growth in our aging population—and, as a result, it’s important that doctors be able to apply a palliative care approach with their patients. Is this still the case?

When I observed geriatric and palliative care physicians, I found that caring for people with serious illness or disabilities—ensuring quality of life—required skill that takes as much practice and attention to detail as surgery. Every clinician—and in fact, every family—should be able to have a basic discussion driven by questions like:

• What is your understanding of where you are with your health?
• What are your fears if your health worsens?
• What are your priorities if time were to become short?
• What are you willing and not willing to go through for the sake of more time?
• What’s the minimum quality of life you find acceptable?

The answers to these questions reveal the real goals we should be pursuing for a person’s life.

Have you seen improvements in palliative care training in the last five years?

When I first started writing about these issues around 2009, the country was in the middle of a death panel political debate. Many worried that paying clinicians to have these conversations would lead to people pulling the plug on patients all over the country; the federal government would reject grants with terms like “palliative” or “end-of-life care” because of how toxic the topic was.

Developing the language—understanding that having these conversations doesn’t take control from people, but allows them to assert their real priorities—has enabled us to progress to a point where we now see not only increased training for caregivers, but families and policymakers recognizing this as a healthy discussion to have.

However, I consider us only halfway there. We have defused the idea that addressing these issues is somehow immoral, but we’re not quite at the point where failure to plan and have these conversations is understood to be a terrible mistake. For instance, there are still many cases where nursing home residents are miserable because they feel like they are in prison. I met a woman with severe Alzheimer’s who would be caught hoarding cookies because she had a medically-ordered liquid-only diet, for fear she would choke on something. The last joy she had was a cookie, and it would be taken from her. We should make space for conversations that allow people, or their proxies, to express the priorities for which they are willing to take risks.

How would you describe an assisted living facility that works well? Have you seen improvements in this field?

At some point, everyone is going to need help—whether in assisted living or in their own home. When it’s done well, it starts from a premise of not just what is safe, but what contributes to a purposeful life— even in the face of disability. It asks “who are you, and how do we help you continue to grow and develop in this phase of your life?”

For my increasingly quadriplegic father, being at home rather than in a hospital was a top priority. If he could get an hour per day around the table with friends and family, that was an incredibly meaningful life where he still felt he had a purpose and could contribute. Enabling that became a goal of our caregiving, and we were able to build solutions around what he really cared about.

How do we help home healthcare and direct-care workers do the best job they can?

We need an economy that serves people across their lifespan, which now exceeds 80 years on average. Human caregiving will be a vital component. Healthcare has been an industry where workers generally have done well—particularly inside hospitals, which offer more job security, better benefits, skills, and a longer span of time in that work. The irony is that, as caregiving moves into the home, it’s entering a sector with few protections, insufficient resources for professional development, and little recognition of this work’s value.

That is beginning to change as we start holding health systems accountable for the total costs they drive and improving the value of care. We’re beginning to recognize that a home-based team enables care that allows one to meet both quality of life and life expectancy goals without nearly as much intensive care unit time—and that we have vastly underpaid and undervalued the workforce that creates this potential.

I think a lot of our employment will move out of large institutional settings and the rote kind of work that automation will replace and become much more relationship-based. We have to value that. That capability generates so much value if you professionalize, reward, and support it.

What’s next in your work?

I’ve had an unusual life in that I’ve been able to write about ideas, test solutions in my academic setting and at our research center, Ariadne Labs, then implement and scale the lessons learned at other organizations around the country—like Haven, where I am now.

I was a part of a trial at the Dana Farber Cancer Institute that saw experienced cancer-care doctors achieve earlier end-of-life conversations with more than 90 percent of patients—resulting in a 50 percent reduction in anxiety or depression in people with an existential threat to their life, no reduction in survival, and evidence of significant reduction in resource costs.

Ariadne Labs is now developing and implementing this model with many systems around the country—including Baylor Scott & White, the largest health system in Texas. With a model developed, some of the new healthcare entities appearing on the landscape can start providing tools to drive it to scale. We are on a path where our policies, tools, system, and training are all beginning to change.

What are your reflections five years later, and why do you think the book has been received as it has?

When we first released the book, we felt it was important but had no idea if it would resonate. I don’t think I appreciated how universal what I’d gone through with my dad was, but about a third of our population have had someone close to them come to the end of their life or need institutional care in the last year. People see how much suffering there can be when it’s not managed with attention to life priorities, and I think a lot of people are looking for stories and ideas that could help them navigate that better.