Football and chocolate ice cream are the two somewhat unlikely images that stuck with me after reading Being Mortal: Medicine and What Matters in the End, Atul Gawande’s powerful new book on aging, death, and end-of-life care. Because Gawande, the surgeon, Harvard Medical School professor, and New Yorker staff writer, poses this as the central question of the book: If your time becomes short, what is most important to you? What, in other words, is your definition of a happy, purposeful life?
For one man featured in Gawande’s new book, the answer is simple. As long as he’s alert enough to watch a football game, and as long as he has the ability to eat chocolate ice cream, that’s enough. He’s happy. Everyone’s answer to this question will be a little different, and Gawande’s point is that every answer matters. It’s the radical idea that everyone, even the ailing and the aged, deserves to lead a meaningful life, a notion that runs contrary to the way many old-age homes are conceptualized.
Gawande recently talked to Science of Us about his new book, and how to keep life worth living, even for those who, through sickness or old age, are mostly dependent on others.
Your book is about mortality. But, as you’ve said yourself, it’s less about what makes for a good death than what makes for a good life, all the way up to the final days. So what do we get wrong about the way we currently view illness and aging, especially in those final years when independent living becomes less possible?
I think what we’ve really lost sight of, both in medicine and society, is that we don’t recognize that people have priorities besides just living longer. We all have things we care about; we all have reasons we want to be alive. And preserving those reasons is fundamentally important.
What I mean is — we have no imagination. We have no actual picture of what a good life might be when you are dependent. The assumption is, Well, jeez, if I’m in a wheelchair, if I have to be helped going to the bathroom and getting dressed, then I can’t have a purpose in living, or, I can’t add meaning to the world. And so that’s what’s so incredibly depressing about the possibility of the end of life, and what’s going to happen to you when you move into an old-age home.
On the subject of nursing homes — one incredibly memorable person in your book is Bill Thomas, who, you write, really helped to change the thinking behind a lot of these institutions. Can you talk about how his vision helped introduce a new way of thinking about life at this stage?
So, Bill Thomas came in as the new medical director of a nursing home in upstate New York. It was a progressive nursing home, and they had lots of things they were doing that were really great. But the elderly there — he said it brought him down to be around them. He described the people as suffering from the three plagues: boredom, loneliness, and helplessness. You know, a life of television, bingo, and group scheduled activities is not one that anybody looks forward to.
And so he started thinking, What’s missing here is life. You know, think of in your own home, there’s spontaneity; there are things that you have responsibility for.
The other thing to know about Bill is that he ran his own farm there in upstate New York. So he connected those two parts of his life, and said, Why don’t I give these people pets? And not just a pet here and there. We’re talking two dogs, four cats, a hundred parakeets, laying hens, rabbits — I mean, it was a menagerie. And he had to go up against the New York State regulators, but it was eventually approved.
And an incredible thing started to happen. Someone would have a pair of parakeets in their room, and this would be someone who had been more or less mute for weeks — you know, just, flat, depressed. Maybe they’d hardly left their bed for a long time. And these birds would get put in their room. And for the first week, they’d just watch the birds. And then the next week, they would speak, for maybe the first time in a long time — they’d tell the nurse, You’re not feeding the birds properly. And then, the week after, they’d get out of bed, and say, Goddamn it, I’m just going to feed the bird myself.
I love that story. So what did this mean to the residents of this nursing home?
You’re giving people a chance to have responsibility for the care of, not only themselves, but of a household, and others in the household. And this turned out to be this critical turn of the key for many of them. The amount of medication required fell, and survival went up. And people took notice.
But I have to stop here and say that this is part of the thing that drives me crazy. When we look at these kinds of stories, we say, And it helped them live longer! It’s like, no, that’s not the point. The point is that it let them live better. It’s the idea that you could provide an intervention that could provide people a reason to be alive. That’s the amazing and most important thing.
And it didn’t boil down to how the animals saved them. It boiled down the idea that people need to have purposes in their lives, and that you could offer ways that they could connect to them. That they could live for something larger than just being alive.
You write that it’s not just that this experiment gave the residents a purpose. The significance was that many of us assume it’s not even possible for life to have a purpose at that stage — when you’re old, dependent, and in a home. Can you talk about what you mean by that? Why do we assume this of the elderly?
To answer that question, I’m going to borrow something one of the innovators in this area, Keren Brown Wilson, told me. She said that we want safety for those we love and we want autonomy for ourselves. When we’re looking at the adult children working with our parents, these places figure out that it’s the children making the decisions, and so the first thing they tell you is how safe they are. But they don’t tell you how — or if — they go about keeping people connected to the things that they most care about in life.
So I visited a place up in Massachusetts that took this very different philosophy. Instead of putting a dozen rooms around a nursing station, for example, they put them around a kitchen. And the elderly could go into the kitchen, and they could open the refrigerator, and they could get whatever they wanted. That kind of unstructured spontaneity — do you know how controversial that is? A diabetic might go into the refrigerator and take a soda. Someone might even grab a beer, horror of horrors. And, according to our rules, that would be unsafe.
One of the most common reasons elderly people in nursing homes get written up is for food violations. Oh, and by the way — you’re living in a place where you can get written up! And the kind of food violation you’ll see in 80-year-old patients with Alzheimer’s is, like, hoarding cookies, when they’re supposed to be on a puréed diet.
You’re basically saying that a certain amount of freedom is actually more important, psychologically speaking, than safety?Exactly. With the cookies example — yes, there is the very real possibility that they might choke. But if these cookies are so important and meaningful to them, then, honestly, just let them eat the cookies.
Because if you don’t have that freedom, you feel like you’re in a prison. People have to be allowed to make choices. And you can argue with them about choices — it’s just like in your own home, where you argue with your parents, or they argue with you about what you both think are good choices and bad choices.
But that’s part of being alive. People have priorities besides just surviving and being safe, and we as a society have to recognize that.
So for those of us who aren’t directors of nursing homes — how do we move toward making the end of our lives, and our loved ones’ lives, better, and more filled with meaning and purpose?
We need to learn what people’s priorities are, and the most reliable way to do this is to simply ask them. But we don’t ask.
Less than a third of cancer patients in one study — terminal cancer patients, who lived on just four months after the study started — less than a third had any discussion with their clinicians about what their priorities and goals were for the end of life. And those patients who did have that discussion were more likely to have stopped aggressive therapy sooner. They had less suffering at the end of life. They entered hospice sooner. Their family members had less depression and post-traumatic-stress-disorder symptoms than the others at six months after the patient died. And then the striking thing in multiple studies now is the groups that had those conversations often ended up using less aggressive care to the end; they not only did not shorten their lives, they tended to live longer.
It’s a hard conversation to have. But there’s actually an incredibly simple way to broach the subject. It just needs these simple words: I’m worried. You’re saying, I’m worried about what I’m seeing going on. It doesn’t say, I’m certain you’re going to die next week, because we’re not certain exactly what’s going to happen. But it puts the worry on the table, and then it also says that we can talk about those best cases and worst cases here.
You’ve been talking about the words that a medical professional can use to talk about dying. But do you think those two words — I’m worried — would also help a layperson broach this subject with an aging or ailing loved one?
I think so — in fact, I used them when I was talking to my dad toward the end of his life, when he was diagnosed with a disease that would cause him to gradually become quadriplegic.
We put off that talk for a while, because we didn’t know the end would come so soon — we kept thinking it would be later. But then he began having a series of falls. At one point, he fell in the middle of the night, and my mom couldn’t get him off the ground. And then, with her arthritis, she ended up on the floor next to him, and neither of them could get up! And so they called me up, like, Help. And so we called a friend who helped them get up, and meanwhile I immediately flew out to see them. And by the time I arrived, he was feeling better and he was like, It’s probably all right. It was just this one thing.
And being able to just say those words, I’m worried — I wasn’t saying I know for certain that we’re going to be in trouble here. And maybe this really was just a one-time thing. But I was really worried, and being able to say so let us open the door to the next set of questions — like, What do we do if this happens again? So these words let us walk down that road in the conversation.
And from there, you can start to arrive at answering this question that’s at the heart of your book: What becomes important to you if your time becomes short?
I think my favorite answer to that question was “chocolate ice cream and football.”
Yes! This was an older man who told his daughter, when she asked him this line of questions, As long as I can eat chocolate ice cream and watch football on television, that’ll be good enough for me.
When I had this conversation with my father, I mentioned that, and he said, No way that’s good enough for me. He’s a very social creature, and he wanted to be able to interact with people. So he needed to be able to talk and have his brain together enough to have that kind of interaction. And he also wanted to know that he was going to be able to keep making some kind of contribution to the world. You know, he was a doctor and he liked helping people, and he wanted to know that there was some way for him to keep up doing that right up to the end. And so that’s what we tried to make sure, as treatment went along and as his condition worsened, that we were prioritizing the options that would not sacrifice his ability to see people, connect with them socially. Even on hospice, he continued to have dinner parties.
As I was reading this book, I kept asking myself, how would I answer that question — what would matter to me if my time became short? So I’m curious: Have you answered that for yourself?
Yeah. My wife and I have talked about this, and we have very different opinions. For me, if I’m reduced to a brain in a jar that can still be connected to have some kind of sensory input and I can communicate with others stills — you know, if I’m still able to talk and connect and get a sense of what’s going on in the world — that’s good enough for me. However, if my body is still working, but my brain is not — if I’m not who I am anymore, and I can’t interact that way anymore — then just let me go.
Now my wife’s answer is, Hey, if I look happy, that is good enough for me. She said, If you see me and as long as I look like I’m happy I may not be who, I was I may not even recognize you anymore, but hey, if I look happy, that’s good enough. Keep me going.