What is a Good Death — and Why Do So Few of Us Get One?

There are certain figures that just … stick out in our minds. Like: “Nine out of ten people live in the Northern Hemisphere.” Or: “Nearly half of all marriages end in divorce.” Well, as a physician and an economist, I’m fascinated by this one — you may have heard it: Up to 25 percent of annual Medicare spending goes to patients in their final year of life. Of course, the exact size of the figure depends on how you calculate it. But, either way, that’s a lot of money — over $150 billion — on healthcare for people with less than 12 months to live. There have been politically charged arguments for years about this issue.

TX Rep. John ZERWAS: Uh, Mr. Cain, you made a passing comment at the end of your layout to something regarding a “death panel.” Did I hear you say that correctly?

TX Rep. Cain BRISCOE: Absolutely, sir.

ZERWAS: So, would you please describe for me what a death panel is?

No matter how much doctors try to predict it, death is largely unpredictable, even among the very sick. One study from the University of Chicago found that doctors overestimated how long hospice patients with cancer had to live — by a factor of five. As in, they might suggest you have 10 weeks, when it turns out you only have two.

From the Freakonomics Radio Network, this is Freakonomics, M.D.

I’m Bapu Jena. I’m an economist and I’m also a medical doctor. Each episode, I dissect an interesting question at the sweet spot between health and economics. Today: how much should have we be spending on end-of-life care? Is more care always better? And how can people near the end of life better spend their time, their energy, and their hope?

BURSTEIN: My mom was diagnosed in the summer of 2020, and they kind of said, “Even with treatment, we expect like six months to a year.”

And how can we change the way we think about care during this really uncertain period — when we know a person will die soon, but we just don’t know how soon?

BARNATO: You only know it’s the last six months after the fact. There’s this huge variation and you could be someone who lives less, or you could live a little more.

BURSTEIN: So, my mom, originally — this is going back six years now — came down with a fever that they couldn’t quite figure out what was going on.

Julie Burstein is a longtime radio producer who lives in Northern New Jersey. Her mom, now in her late 80s, was eventually diagnosed with a type of cancer called lymphoma.

BURSTEIN: And I remember that meeting because the doctor said to her, “I am going to treat you and you are going to be well.” My mom was so sick, and we just couldn’t believe it.

Over the next few years, Julie’s mom was diagnosed with three separate cancers. She recovered from her lymphoma, as the doctor predicted. About a year later, a spot in her lung also turned out to be cancer, but she was successfully treated for that too.

BURSTEIN: And then, in the summer of 2020, she went in for a CAT scan and they saw something in her abdomen. And I can still remember the look on her doctor’s face when she told us, because this was a doctor who’d known my mom for five years and had basically cured her of lymphoma. And she started to cry, and she said, “I’m really sorry, but it’s ovarian cancer.” You know, ovarian cancer, especially when you’re that old, is a terrible diagnosis. And I wanted a palliative physician on her team just in case things didn’t work.

Julie’s instincts were good. And my next guest can help us understand why. She and I go way back.

JACKSON: My name is Dr. Vicki Jackson. I’m the chief of palliative care and geriatric medicine at Massachusetts General Hospital. I also co-direct the Harvard Medical School’s Center for Palliative Care. My job is to help patients with serious illness live as well as they can for as long as they can.

Vicki’s job is to manage and mitigate her patients’ discomforts. That can mean pain, nausea, shortness of breath, anxiety, depression. It also means, though, helping patients understand their options. Lots of people conflate palliative care with end-of-life care. They think doctors like Vicki are called in when the only focus is on keeping patients comfortable, not on treatments that can extend life. That’s a misconception. Palliative care physicians don’t just care for patients with a few months to live.

JACKSON: Referring clinicians will conflate hospice and palliative care and say, “Well, they’re not ready for that yet.” And in my mind, I’m always thinking, “Not ready to feel better and to try to get extra support?” No one has to be dying to receive palliative care. Currently in the world of especially oncology right now, I graduate patients from my clinic, which I love! Because we’re getting better treatments that help patients live longer or be cured from these serious illnesses.

JENA: And just to clarify, you’re not — some patients are graduating to — to heaven, but not all of them, as they’re graduating somewhere else?

JACKSON: Oh no. I mean, they’re GRADUATED. They don’t need to come see me! They feel fine! Yeah, exactly. Exactly.

JENA: Let me switch gears a little bit. I want to talk about this study that came out in 2010. I think this was right in the middle of my residency. It was a paper in the New England Journal of Medicine — or as you refer to as the “regional medical journal.”

JACKSON: Just our local paper! Yeah, exactly.

JENA: Just the “local paper,” yeah!

The study we’re joking about is one that Vicki and several others coauthored with Dr. Jennifer Temel from Mass General Hospital. I asked Vicki about it because it was one of the most interesting studies of palliative care that I’ve ever seen. It looked at patients with metastatic non-small-cell lung cancer who were enrolled in a clinical trial to study the effectiveness of palliative care.

JACKSON: We saw them within weeks of being diagnosed. And then we saw them monthly until the end of their life.

The subjects were all given standard medical interventions for their disease, including chemotherapy. Then, they were randomly separated into two groups. The first received systematic palliative care from the start; the other received palliative care only when they requested it.

JACKSON: So, the study showed that patients who saw palliative care early had an improved quality of life — pretty significant improved quality of life.

Specifically, those patients reported feeling more physically comfortable, and had significantly reduced levels of depression and anxiety.

JACKSON: What we’ve really found in additional analyses is that a lot of that difference in quality of life is primarily driven by differences in how patients cope. So, what we find is that patients who see palliative care are more likely to use what we would consider adaptive coping strategies — gratitude, reframing — less likely to use avoidant coping mechanisms like denial or avoidance.

There was another result in that study that really got people’s attention — and it got mine.

JACKSON: When we looked at it, we actually, to our surprise, saw that patients who saw palliative care early in our study lived almost three months longer.

Three months longer. And these folks didn’t get some special cancer treatment — in fact:

JACKSON: They were less likely to get chemotherapy within the last 60 days before their death, which is interesting.

JENA: It suggests that for some patients that additional care perhaps is more harmful, than — than helpful. And the hard thing is for doctors to figure out, okay, what care falls into that bucket.

JACKSON: That’s right. That’s exactly right.

JENA: There’s probably a lot of reasons for why doctors may do this. Part of it could be that they’re just sort of overly optimistic in their prognoses. Or it could also be sort of this drive in medicine to always do something. Like if you haven’t done something, it feels like you’ve dropped the ball on a person.

JACKSON: That’s exactly right. I think it’s both. We are not taught to, you know, “don’t do something, just sit there.”

Just sitting there can be hard for patients too. A survey of cancer patients conducted by researchers at the University of Southern California found that 77 percent of them preferred a hopeful gamble on a treatment with a small chance to cure them — versus a treatment that guaranteed exactly two more years of life. The study suggested that patients’ value of hope — their willingness to take a chance — may be quite large. Now, hope and optimism are terrific to have. But it’s also crucial that patients understand the trade-offs in the process.

BARNATO: If you’re only ever looking at what the win is in that gamble, but you’re not talking about what the loss is, you could actually end up with something really bad. It is a possibility that those hopeful gambles that people are making are causing harm.

That’s coming up after the break, on Freakonomics, MD. I’m Bapu Jena.

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Before the break, we heard from physician Vicki Jackson about the benefits of palliative care. Greater understanding of the of ups and downs of medical interventions? Check. Less pain; less nausea; less depression and anxiety? Check. Possibly more time alive? Big check. And yet, Vicki points out:

JACKSON: The Massachusetts Serious Illness Coalition will say that their research with patients and families — the vast majority don’t know what palliative care is. And when they learn about what it is, really are wondering, “Why was that not offered sooner?”

One reason might be money. Specifically, the way the federal government and insurers reimburse hospitals.

BARNATO: We still have a system of reimbursement which explicitly values surgical procedures more than talking to someone about what matters most to them. Medicare and other payers are paying more money for those things like oncology services and surgical services.

That’s Amber Barnato, Director of The Dartmouth Institute for Health Policy and Clinical Practice. Her research focuses on end-of-life care and decision-making. She, too, finds that sick, elderly patients often don’t know much about the possibility of palliative care.

BARNATO: Oh, yeah. I would say the majority of people are not having those conversations with their clinicians.

Back in 2011, Amber coauthored a study published in The Lancet. It showed that nearly a third of elderly Americans underwent an inpatient surgical intervention during the last year of life, with most of these procedures occurring in the month before death. That wasn’t the only fact that was interesting. The numbers varied a lot between different parts of the country. The authors noticed that areas with more hospital beds per capita performed more inpatient procedures at the end of life — while areas with fewer beds were less aggressive. It’s hard to know what to make of that finding, but one possibility is that the availability of resources, like hospital beds, in certain parts of the country made surgery at the end of life more common there.

Amber’s work focuses on a range of factors that could cause this phenomenon, including the culture of local medical institutions, and how doctors might absorb and mirror the treatment attitudes around them. For example, her organization is home to the Dartmouth Atlas Project, which for about 20 years has been studying how Medicare and Medicaid resources are used across the country. Their research shows that patients in regions where doctors are more aggressive in the last six months of life do not live longer. So, how and why are doctors and patients blowing through the yellow light — the cautious prompt — that a palliative care doctor might have provided? Amber has tried to answer that question by putting doctors through simulation exercises — basically, staged mockups of a clinical situation.

BARNATO: I have them see a patient who’s actually an actor on a set that looks like a hospital room, and then I see how they behave. And because I hold the actor’s behaviors totally constant, anything that the clinician does is entirely based on what they bring to the room.

The actor plays a patient whose immediate predicament, a lack of oxygen, will kill him unless he is put on life support, in the form of a ventilator. But, his chart also shows a broader terminal illness, which is likely to kill him within the next year. Amber’s subjects play out this scenario on the spot, interacting with the so-called “patient” and then ordering the tests and procedures they think are appropriate.

BARNATO: After, I have the clinician watch the video of them with the patient. And I ask them, “Tell me what you were thinking right here.” And you know, one of the key things I’m looking for is: when do they actually disclose information about prognosis or the fact that the patient’s dying? And doctors have confessed to me that, when they went into the room, they looked at the patient’s chart and they said, “Oh my God, wow, this patient’s not going to do well. This patient’s riddled with cancer. Look at their vital signs — they’re basically dying.” But then when they get in the room, they say things like, “Well, um, because your oxygen is so low, we need to intubate you.” They don’t say, “We’re faced with a choice between palliative care in anticipation of your death and making you as comfortable as possible — or placing you on a breathing machine.”

Doctors know that putting this fragile patient on a breathing machine means they may never recover.

BARNATO: They feel like they’re giving a choice between dying now and dying later. But they forget to mention that if you choose the branch of dying later, you might end up, in this case, dying in an I.C.U. after an operation. Whereas “die now” might not be like right this minute. You might yet have weeks and it might give you the chance to, who knows, call your sister.

It’s not a decision to take lightly, and it’s often made in really painful circumstances.

BARNATO: Like, if I gave you the job of walking into a room and telling someone that it looks like their life is coming to a close, right, it’s not a topic that you want to bring up. And especially if you’ve got something else you can offer, which is entirely, you know, within your rights to offer. It’s plausibly, what your entire hospital is meant to do — it’s meant to stave off death. And so, um, yeah, it’s really just easy to slip down that other pathway, which is like, you know, “Let’s just give this a try.”

And then, everyone is off-to-the-races. An opportunity — for the patient to make an important choice with full information — has been missed.

BARNATO: And it’s really fundamentally the responsibility of the healthcare delivery system and providers to be giving patients the signal. Right? Because that’s kind of how patients operate. They’re — they sort of are waiting for our sign, right?

A lot of this is understandable — it’s human nature to want to act. And doctors may want to feel they can put their training to work and solve the problem at hand. Here’s Vicki Jackson again.

JACKSON: I think it’s really hard to be an oncologist or a cardiologist or a pulmonologist, who’s treating people with serious illness. There are times when the currency of caring becomes that clinical intervention when it may or may not be like within the patient’s goals and values, or even be helpful.

As Vicki explains, palliative care can help raise the right questions, and perhaps free some physicians from feeling like they need to solve every problem with an intervention.

JACKSON: I think this is really a triadic relationship between the palliative care clinician, the patient and family, and the referring clinician. The patient may have felt like, just crummy for weeks. But boy, when they’re coming in to see their doctor, they like buff themselves up. The lipstick comes on, they look good. Then cautiously, “Great, great — let’s give you chemotherapy.” And I’m like, “Seriously? They’ve been in bed for three weeks!” They’re like, “They didn’t tell me that! I asked!” Right? And so, I think it’s helpful to have the patient and family to have another space to talk about it. And the clinician also to have a space to say, “Is this really going to help? Do I really want to do this?” Because I think sometimes, we treat when people are so ill that I think it may make time shorter rather than longer.

Look: getting end-of-life care right is hard. We know that lots of treatments near the end don’t prolong life and may even shorten it. But one of the biggest problems is that doctors just aren’t very good at knowing which treatments will help — and if they do, by how much. It’s why I’ve never liked the statistic that I quoted at the start of today’s episode: that 25 percent of Medicare spending happens in the last year of life. If you think about it, of course it does. Our bodies are, in a way, like machines: it costs way more to fix us when we start breaking down. The problem is, we don’t always know how long we have left and whether the repairs will work. And, whether they work or not, they’re always costly.

Another part of what makes end of life care so challenging is not knowing what to expect, which makes it difficult for all of us to let go. You might think doctors would act differently than the rest of us when it comes to their own end-of-life care. After all, they see firsthand how complicated things can get. And yet, there’s a study in JAMA that showed the opposite — I talked about this in our episode called “Do as Docs Say, Not as They Do.” It showed that doctors at the end of their own lives make the same types of choices as everyone else. What that tells me is: it’s not simply an issue of people not knowing what to expect. It’s about something more. The silver lining is that there’s hope. There are doctors who can help us navigate that journey.

BURSTEIN: My mom — she’s an 88-year-old woman, with several different forms of cancer, who sees a gazillion doctors. “Yet another doctor? I’m not dying right now. Why do I have to see this person?” But we talked through that and, you know, he was really focused not on: “How do we get rid of this cancer?” but “How are you feeling? Are you eating? Can you walk around? What’s happening?” And that was a huge gift.

JACKSON: I remember a patient in our first study. He was like, “Okay, Vicki. So, let me get this straight. You’re going to help me feel as well as I can. And then when it’s my time to worry, you’ll tell me. But other than that, I can just go live my life?” I was like, “Yeah. That sounds about right.” And he’s like, “That’s awesome!”

BARNATO: What makes a good death is recognizing that while you’re dying, you still have to be living.

That was Julie Burstein, Vicki Jackson, and Amber Barnato. I want to thank all three of them for joining us on the show. If you’re interested in hearing more about end-of-life care, check out my buddy Steve Levitt’s discussion with hospice and palliative care physician B.J. Miller on his show, People I (Mostly) Admire. It’s the episode called “Does Death Have to Be a Death Sentence?”

Coming up next week: the first of a two-part series about taxes. It comes just once a year but — does Tax Day have lasting effects on our health?

 REDELMEIER: It’s such a cliche, but it’s so true that there’s no way to avoid stress, but there’s an infinite number of ways of making a stressful day worse.

And how might tax incentives influence the timing of some of life’s biggest events?

LALUMIA: The average person might say, “This is such an important decision. I’m not going to be swayed by taxes here.”

As always, I want to thank you for listening. You can find links to all the studies we mentioned at freakonomics.com. It’d be great if you could give us a review on Apple Podcasts or wherever you’re listening. It helps new people discover the show. If you have thoughts on the show, follow Freakonomics, M.D. on Twitter at DrBapuPod — that’s D-R B-A-P-U P-O-D — and let us know! You can still shoot me an email at bapu@freakonomics.com.

Freakonomics, M.D. is part of the Freakonomics Radio Network, which also includes Freakonomics Radio, No Stupid Questions, and People I (Mostly) Admire. All our shows are produced by Stitcher and Renbud Radio. This episode was produced by Sarah Lilley and mixed by Eleanor Osborne. Our senior producer is Julie Kanfer. Our staff also includes Alison Craiglow, Greg Rippin, Gabriel Roth, Rebecca Lee Douglas, Morgan Levey, Zack Lapinski, Mary Diduch, Ryan Kelley, Jasmin Klinger, Emma Tyrrell, Lyric Bowditch, Jacob Clemente, Alina Kulman, and Stephen Dubner. Our music was composed by Luis Guerra. To find a transcript, links to research, and a newsletter sign-up, go to freakonomics.com. If you like this show, or any other show in the Freakonomics Radio Network, please recommend it to your family and friends. That’s the best way to support the podcasts you love. As always, thanks for listening.

JACKSON: Unless we have funding to be able to increase the workforce it’s going to be hard for us to have enough clinicians to meet that need.

JENA: I would just say that, in my expert health policy opinion, you just have to retire at age 90. I solved the problem! Solved the problem in literally 10 minutes.

JACKSON: Excellent! Perfect! Perfect. Oh, man.