Bio(un)ethical

#11 Richard Leiter: Is a better death possible?

• with Leah Pierson and Sophie Gibert • Season 2 • Episode 11

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In this episode, we speak with Dr. Richard Leiter, senior palliative care physician at Dana-Farber Cancer Institute and Brigham and Women’s Hospital and assistant professor of medicine at Harvard Medical School. We discuss the state of end-of-life care in the US today, why patients often receive care that doesn’t align with their values, whether some of the care that doesn’t seem to promote the things patients’ care about actually is aligned with their values, and whether doctors put too much pressure on patients to make end-of-life decisions autonomously.

(00:00) Our introduction
(08:46) Interview begins
(13:47) Do early conversations make a difference?
(20:46) Challenges in doctor-patient communication
(35:47) Advice for listeners on being a healthcare proxy
(41:47) What if the care people receive is value-concordant? Hindsight is 20/20
(47:40) Trade-offs between living long and living well
(52:04) Trade-offs between living well and dying well
(54:12) Value-change over time and advance care directives
(1:01:03) Can doctors better respect autonomy by limiting options?
(1:08:49) Code status, CPR, and framing patients’ options
(1:20:16) Supporting family members’ decision-making and narratives

Mentioned or Referenced:

Bio(un)ethical is a bioethics podcast written and edited by Leah Pierson and Sophie Gibert, with production support by Audiolift.co. Our music is written by Nina Khoury and performed by Social Skills. We are supported by a grant from Amplify Creative Grants.

Note: All transcripts are automatically generated using Descript and edited with Claude. They likely contain some errors.

Sophie: Hi, and welcome to season two of Bio(un)ethical, the podcast where we question existing norms in medicine, science, and public health. I'm Sophie Gibert, a Bursoff fellow in the philosophy department at NYU, and soon to be an assistant professor at the University of Pennsylvania.

Leah: And I'm Leah Pierson, a final year MD PhD candidate at Harvard Medical School and the Harvard T. H. Chan School of Public Health.

Sophie: The U.S. healthcare system has been criticized for devoting significant resources to providing end of life care that does not meaningfully extend patients' lives or improve the quality of their lives, and therefore does not seem to reflect what most patients want the end of their lives to look like.

Leah: We'll call care that doesn't promote the things patients care about, value discordant care. Value discordant care isn't just bad because it fails to align with patients' values. It often comes with significant costs, like prolonged suffering for patients, arduous decision making processes for their loved ones, and large medical bills.

Sophie: There are many reasons why patients receive value discordant care at the end of life. Some of these have to do with our society and our culture broadly. For example, in our modern world, as mortality has fallen, life expectancy has increased and scientific breakthroughs have transformed once lethal conditions into manageable chronic illnesses, we are less willing to accept death. At least right now. That isn't unreasonable. While most of us accept that death will eventually win the war, modern medicine has made it such that disease no longer wins every battle. Historically, one in two babies died before reaching their 15th birthday. So a few hundred years ago, death was ubiquitous and adults would have been well acquainted with it. But today we have much less exposure to death, and this lack of familiarity leads to an often appropriate lack of acceptance. We don't treat the deaths of kids or young adults as normal because they aren't and shouldn't be. But our lack of exposure to death has also left us with fewer opportunities to witness death and to grapple with mortality, leaving us ill equipped to recognize what dying looks like, figure out what we want at the end of life, and make end of life decisions.

Leah: The media doesn't help. We are also frequently exposed to stories depicting miraculous recoveries, which may leave us with unrealistic expectations regarding the efficacy of medical interventions. For instance, researchers reviewed the success rates of CPR on two popular medical TV shows, Grey's Anatomy and House, and found that fictional patients survived their cardiac arrests 70 percent of the time.

It's perhaps unsurprising then that, when surveyed, hospitalized patients predicted that 60 percent of those who receive resuscitation for in-hospital cardiac arrest survived to discharge. In reality, only about 15 percent do.

Sophie: Other contributors to value discordant end of life care are built into the culture of medicine and the healthcare system itself. A basic point is that societies have decided they're willing to pay for this care. In high income countries, medical spending in the last 12 months of life accounts for 8-11 percent of total medical spending. In the last three years of life, medical spending accounts for 14 to 35 percent of total medical spending. It's also worth noting that the U.S. is not an outlier. Although we spend much more on health care overall, we don't devote disproportionate resources to end of life care relative to other high income countries. Which makes it hard to pin the blame for high health care spending at the end of life on things specific to American culture or American medicine.

In Atul Gawande's book, Being Mortal, he argues that a substantial portion of the end of life care patients receive doesn't do much for them, and that our medical systems are often designed to achieve a slim chance of a miraculous outcome. He writes about terminal illness, quote, "There's almost always a long tail of possibility, however thin.

What's wrong with looking for it? Nothing, it seems to me, unless it means that we have failed to prepare for the outcome that's vastly more probable. The trouble is that we've built our medical system and culture around the long tail.

We've created a multi-trillion dollar edifice for dispensing the medical equivalent of lottery tickets and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win. Hope is not a plan, but hope is our plan."

Leah: There's a feedback loop between our willingness to play and pay for this lottery and what care clinicians offer patients. We'll get into this more in the interview. But clinicians may offer care they think has only a remote chance of benefiting patients for a few reasons. First and foremost, clinicians may feel compelled to put options on the table because of the centrality of patient autonomy in healthcare. Medicine was historically much more paternalistic than it is today, and there has rightly been a shift towards promoting patients' ability to make decisions for themselves, especially in high stakes situations. But there are costs, too. Sometimes patients are left with too little support when making complicated medical decisions at the end of life. Decisions that patients and their families may not always be well equipped to make. Second, clinicians, knowing full well that many families want to do everything, may believe that they can only maintain a therapeutic alliance with patients by offering aggressive interventions. Third, clinicians may worry about the legal implications of not offering care, hospitals have, for instance, been sued for failing to resuscitate patients against their family's wishes. Fourth, clinicians may struggle to communicate with patients or their families, for instance, regarding a patient's prognosis, their values, the risks and benefits of a potential treatment course, and so on. When patients are not armed with good information, they cannot make informed decisions.

Sophie: Lastly, there are patient level factors that contribute to the prevalence of value discordant end of life care. To return to the communication point, while clinicians have an obligation to communicate openly and honestly with patients, their ability to do this hinges on patients and their families' willingness to engage in these conversations and absorb the information that is relayed. Absorbing this information is hard given how technical and emotionally charged medical and prognostic information can be.

Leah: Patients' medical literacy, their level of trust in the healthcare providers and the medical system, and the extent to which they've grappled with their own mortality may all affect their ability to understand and reason using the information clinicians give them. Many patients also feel a sense of obligation to their loved ones to stay alive as long as they can and correspondingly choose to pursue aggressive interventions that doctors offer them. Relatedly, family members tasked with making decisions for their loved ones who are too ill to make decisions for themselves may feel an immense amount of guilt or distress associated with making decisions that hasten their loved one's death. These feelings can be exacerbated by not knowing what their loved ones would have wanted. And while having discussions about someone's goals at the end of life can often help clarify their wishes, it's hard to predict the future. Meaning surrogate decision makers often face situations that were never anticipated or discussed. Medicine is also just really complicated. And a lot of patients have limited exposure to what chronic illness and dying look like. As a result, patients or their families may make value discordant decisions, not because they don't understand their own values or goals, but instead because it's really hard to figure out how those values and goals map onto the available treatment options. This can pair badly with clinicians' aforementioned tendency to put more options on the table.

Leah: Our guest today is Dr. Richard Leiter. Dr. Leiter is a senior physician in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Brigham and Women's Hospital, as well as an assistant professor of medicine at Harvard Medical School, where he works on issues at the intersection of palliative care and medical ethics.

We're going to talk with him about what end of life care looks like in America today, why patients receive value discordant care, and why some of the care that doesn't seem to be in their interests may actually be value concordant. At the end of the interview, we'll spend some time discussing whether doctors are putting too much pressure on patients, who often have limited experience making end of life decisions to make these decisions autonomously without sufficient support from their doctors.

Sophie: As always, you can access everything we reference at our website, biounethical.com, and you can submit feedback there or email us at biounethical@gmail.com.

Sophie: Welcome to the podcast. Thanks so much for being here.

Richard Leiter: Thanks for having me.

Leah: So we want to start by talking about what end of life care looks like in the U.S. Our health care system has a reputation for devoting significant resources to care at the end of life and to care that doesn't substantially prolong or improve the quality of patients' lives. How deserved is this reputation?

Richard Leiter: Fairly well deserved. And I think it's complicated. We certainly devote many resources to people at the end of life, but we're not necessarily devoting them in the right places. So a lot of people at the end of their life get care that isn't necessarily concordant with their values, or as you said, not necessarily going to either prolong their lives or improve its quality.

That said, I think end of life care is under-resourced in the U.S. So even for people who have said, life prolongation is not within my goals and values at this point, we struggle to get them the resources that they need. There are many people and families who like to go home or home doesn't work and then they're stuck and they don't have the resources to care for their dying loved one. So I think, yes, we're devoting a lot of resources at the end of life, but actually we need to be devoting more resources, but in different places.

Sophie: As you mentioned, some of the care that's provided at the end of life is value discordant in the sense that it may not be what a patient would actually want if they were fully informed and reasoning well about their options. Some of this discordance may be possible to anticipate and avoid and so we wanted to discuss some of the factors that might contribute to patients receiving value discordant care at the end of life and how we might address those.

One first hypothesis as to why patients might receive value discordant care is what we might call the "head in the sand" hypothesis. In Being Mortal, Atul Gawande suggests that it is our failure to "honestly examine the experience of dying" that contributes to our having suboptimal deaths.

I'll read his full quote: "You don't have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver's chance of benefit.

They are spent in institutions, nursing homes, and intensive care units where regimented anonymous routines cut us off from the things that matter to us in life. A reluctance to honestly examine the experience of aging and dying has increased the harm that we inflict on people and denied them the basic comforts that they most need."

End quote. Gawande doesn't say this exactly, but I take it that some of the subtext here is that many of us bury our heads in the sand with respect to our own mortality for most of our lives. And this causes us to make worse decisions at the end of life. For most of human history, people have had to confront mortality on a routine basis, but a lot of modern people don't have to do this.

To what extent do you think that this kind of thing contributes to worse decision making at the end of life?

Richard Leiter: Yeah, it's a really good question, and I actually think it's a pretty complicated answer. One, because there is this narrative and far be it for me to disagree with Atul Gawande who's written so beautifully about care and end of life care and the experience of aging and dying in the American healthcare system.

And I think in a lot of ways he's right. However, there's this narrative like you read Elizabeth Kubler Ross on Death and Dying and she talks about this sort of archetypal death of this farmer who is in Europe and he's dying and he's laid out in the kitchen and everyone is visiting and paying tribute to him from his town and she talks about how far we've come from that where the whole community was involved in death and dying. That's true. And also that's not necessarily a bad thing, right? I mean, people were dying of now treatable illnesses and communicable diseases and medicine has advanced. So I don't think we want to return to those days.

And I think maybe we bury our heads in the sand a little bit, and most people, it's fine, right? Like you go about your lives and you're not thinking about it and that's okay. It's in a lot of ways, it's protective. You think about the existential angst that would come from every day saying, I am going to die, right? Like some people do really well with that and others, it would be crippling. And so I think that it's okay that we're not necessarily thinking about it all the time, but we need systems and processes and mechanisms within the health care system that when it comes time to think about it and talk about it, we cannot only do that and have people and clinicians who can guide us in those conversations, but then also when we make difficult decisions the systems are in place to support us, and we don't have that right now.

And I think that's where Atul Gawande is spot on, that the system does not help us in this regard.

Leah: Yeah, let's talk about those systems more. My sense is that a different reason that a patient may not receive value concordant care is just that people don't know what they want because no one has ever asked them about their values and goals. And a decade ago, when Being Mortal came out, everyone seemed very excited about reducing the utilization of value discordant care by engaging more patients in conversations about their goals at the end of life. For example, Medicare began to reimburse primary care doctors for having advanced care planning conversations with their patients. Similarly, my sense is that there's been a widespread push to involve palliative care when patients are diagnosed with a life limiting condition like metastatic cancer, rather than waiting until they become critically ill before initiating these conversations. Have these pushes led to more patients thinking about discussing and documenting their goals at the end of life?

And if so, to what extent do you think that these discussions have led patients to receive more value concordant care?

Richard: It's the million dollar question in palliative care, and it's one that has sparked a lot of rigorous and healthy discussion in the field about where are the data pointing us with regard to things like advanced care planning. So to answer the first part of your question, yes, I do think that advanced care planning and there are data to support this has increased since Being Mortal, since Medicare has been reimbursing more for it. I think it's more of a cultural shift than it is the billing. My understanding of the data, I'm not an expert in it, but I think the data are somewhat mixed about that piece of it. But as a whole, we're having more conversations with people, and that's a good thing. One of the largest trials that was done out of Ariadne Labs,

They did a randomized controlled trial looking at the implementation of the serious illness care program in patients who have cancer and their primary outcome was peacefulness at death, and there was no difference there.

Their secondary outcome were the timing, the quantity, and the quality of the conversations and all of those improved. So they would say like more, earlier, better. Secondary outcomes. So more hypothesis generating. But still, I think that signal is real, right? We're having more conversations. How does that translate to care at the bedside? It's really complicated. Because I think even when we have these good conversations, there are a lot of things that get in the way of implementing that type of care in real time. So one of the things I do is kidney palliative care.

I take care of patients with any stage of kidney disease and a lot of my patients are on dialysis and they're in and out of the hospital. They're having complications and we're talking to them and saying, like, is this going for you? What feels most important? And a lot of patients will say, I want to be at home as much as I can. Thank you. Okay, but I would come in for things that are reversible. I'm not ready to stop dialysis. Because if they stop dialysis, their life expectancy would be on the order of a week or two for most people. So they're not ready to stop. They want to be at home. Many of them will end up dying in the hospital, not all because we don't know.

And for an illness like end stage renal disease, it can be really hard to tell when we've passed that point of no return where they're not going to get better. So even though we've had all of the good conversations they're able to say what's most important to them. Sometimes we can only see it in real time to say, you know what that time is now, and they're already in the hospital.

So that's just one example. There are many, and I think it applies differently across different disease groups, but it's really hard to implement this stuff, because we don't always know. The other thing I will say, is that one of the big questions is like, how do we measure this?

Like there is no metric of goal concordant care right now that is the primary outcome that we look at across all care and end of life care studies. People look at very different things, and that makes it hard because we don't know what we're looking at, and there isn't an agreed upon outcome.

It's not like you're doing a study on interventions for MI. You look at cardiovascular mortality. Very clear outcome. Everyone knows what we're talking about. This is much more nuanced, and I think we struggle to figure out what the outcome should be.

Sophie: Are there existing measures for value concordant care? Like, what do those look like?

Richard: There are many different ones. So you know, in the serious illness care program study, they looked at peacefulness at death. That's hard. You can do retrospective studies of caregivers and surrogates to say, did the care that people received at the end of life, did that care align with their goals and preferences. But as you can imagine, there are all sorts of cognitive and emotional biases that play into that when you're looking at those outcomes, so there isn't really one standard way of looking at it. There are people who are looking at it actually right now, trying to figure it out. It's a really robust discussion in the field.

Leah: It seems like in cases where someone's goals are documented, you could just do a retrospective review. Like, did that thing happen? If the patient said my goal is to die at home, and then you can just see, did they die at home? And I get that getting that kind of data might be hard, but is that a thing people are trying to do?

Richard: You can. I think the hard part, though, is that people have multiple goals. So their goals may be they want to die at home, and they want to be comfortable, and they want their family to be supported. And they want to minimize caregiver burden and distress. Right. And the way things play out clinically, those aren't always possible.

So I was just taking care of someone who was in the ICU and fine. And the family said what he wants is to be at home. He really wants to be at home. Okay, let's think about that. What else is important? Being comfortable and making sure that we're supported. He was really symptomatic, was on vasopressors to keep his blood pressure up. We knew that once we weaned those, time would be pretty short and he was getting all kinds of IV medicines to keep him comfortable. So going home wasn't really a possibility for him, even though we had those conversations, we elicited the goals and values.

It was no fault of the system. It was that the disease sort of boxed us in. And in aligning those values that it was like being at home, but also being comfortable, how do we balance those trade offs? And that's what makes it really hard to measure. Because if you look only at did he die at home, he wanted to die at home, he didn't die at home, then you'd say that's value discordant care.

On the other hand, he was comfortable with his family surrounding him and his family was well supported. That's value concordant. So it's hard to weigh those two things and that's what makes it so complex to study.

Sophie: Not communicating well about a patient's prognosis, and specifically for framing things too positively leading patients or family members to pursue aggressive interventions that they might not otherwise pursue.

Do you think that communication breakdowns around prognosis primarily result from clinicians struggling with the prognostication piece? So knowing what will happen or more with the communication piece relaying what will happen? How do you think that mix is divided?

Richard: Probably a little bit of both, but more so on the lack of relaying the information than knowing, because what I would say is, even when there's uncertainty, we can relay that uncertainty to patients and their families in an empathic way. And it's actually very helpful when they hear that uncertainty. We can talk through the best case, the worst case.

So I actually think that it's a lack of, and it's not necessarily a lack of desire, right? It's a lack of training. People aren't trained in this. I'm palliative care fellowship trained. I spent a year learning how to have these conversations.

Not to say that you need to be palliative care trained to have these types of conversations and talk about prognosis, far from it. But I don't think that the medical education system does a good job of preparing people to have these conversations. So I do think we tend to shade on the positive side, sometimes actually on the negative side, too.

Sometimes there's a sense of they're not going to survive. And I've seen that a lot where you say, Oh, the doctors told us it would be two days. And then, two months later, the person is still here. And what does that do for the trust people will have in the system, right?

When you're constantly saying they're dying, and then they don't die. So I think it cuts both ways. But I think that overall, it's a lack of communication, training, and people don't feel equipped to have these conversations in a direct and also compassionate way.

Sophie: Yeah. One thing I was really struck by in rereading Being Mortal last week was there was, you know, an example that he talks about where he really tried to communicate maybe like less of the false hope than he would normally do.

And he then reported that later those patients told him that his first impression had been really bad with them because they thought it had been too blunt. And I imagine it's just really tricky to gauge what any individual patient wants in those terms, because some people are going to perceive things as much more blunt than others.

Is that the biggest piece of the training is doing that?

Richard: It's really hard to have these conversations. I think there's so much that goes into it. A lot of the training is on expecting and knowing how to navigate difficult emotions, right? Like these conversations are hard and you're delivering bad news to people, it's gonna be hard for them to hear.

And I think part of it is understanding that, yes, I didn't do anything wrong by delivering hard information. I delivered the information that we need for people to make decisions, and it's going to be upsetting to them. And I need to stick with them through that and help them navigate the emotions there.

So I think that's one piece of it. The other piece of the training is using our communication skills diagnostically to understand what is it that's going to be helpful for this patient. It doesn't mean shying away from hard information, but it's getting a sense of how do they like their information delivered?

How do they want it delivered to them? Reading the room to say, and this just happened to me over the weekend where I was talking with someone and we could tell that the person was totally overwhelmed by the bad news and we weren't going to be able to make decisions. And I was saying, you know what?

Let's pause here. This is really overwhelming. Let's pick up this conversation another time because it's too much for them. So I think that's part of what we learn how to do. But I think the solution, you ask people, and that's a lot of the time, the first time I'm meeting someone like, how do you like to get your medical information? I'm not saying I have any news to share today, but just in general what type of person are you? And some people will say, you know what I want all the nitty gritty, tell me everything and that helps me make decisions and others will say, I want the big picture. And just tell me what you think I should do.

Or some people will say I don't want to know much of anything at all and talk to my spouse or my kids or my parent or whomever it is, right? And their mode of exercising their autonomy is actually to defer decision making. And so that's a lot of the communication that we learn in our training.

Leah: Yeah, that makes sense. One reflection I've had about this as a fourth year medical student, is that it's not just that we're not taught to do the right thing. Sometimes I think we're implicitly taught to do the wrong thing, or maybe a thing that makes sense at a given phase of our training, but then eventually stops making sense. So, for example, I think there's a lot of emphasis in medicine about having the right person relay the right information, which is super reasonable.

Like if the patient asks the first year resident, what their cancer prognosis is, the first year resident should get ahold of the oncologist and say, Hey, this patient really wants to talk to you about their cancer prognosis. It would be inappropriate for the first year resident who's not the person best positioned to answer that question to answer it. And so if a patient asks me, Hey, am I going to die? My reaction is basically that I should find someone else to answer that question.

Although, this is starting to change as I get further in my medical training. But I think as a result of this, we spend a lot of our training kind of dodging and it can start to feel really unnatural then to be super candid with people. And so while I have this intuitive reaction that, you know, as a person, that when someone asks me a question, I want to answer as honestly as I can. I think it becomes almost second nature to us to try to answer a different question or be political or find someone else to do the work of answering the question. And so I guess maybe one question is just, is that the right intuition to have about this?

Like in general, when it's within the purview of our role, should we be trying to answer patients' questions as honestly and directly as we can? Or is there more nuance here?

Richard: I think there's more nuance. I think there's more nuance. We should be answering people's questions, and also I totally agree that we need the right people in the room, right? So for someone with cancer, like we do need to know what the oncologist is thinking because cancer care is evolving so quickly that we can't keep track of everything, right? Someone may have a specific mutation. They're actually like, you know what? This person is really sick right now, but I could give them this treatment and their cancer might melt away. It may not, but that's really important information to relay.

So I do totally agree that having the right people in the room is really important. We want to make sure that the questions that people are asking us don't disappear into the ether. And that we're not for lack of a better term, like punting it to someone else, but really engaging in that conversation with them.

So someone says am I dying? I think the question is like, what makes you ask that question? What's behind that question? Because what might be behind it is the patient feeling like, Oh, I'm worried I'm dying. I'm feeling things are changing, right? And that's really important to address and sit with them.

So even though you're not necessarily answering the question, you are being there with them and sitting with the difficult emotions that they're having right now and exploring.

Leah: Wait, so if a patient asks you, Am I dying? Should we not answer that question?

Richard: I think we should, but people mean different things when they ask about prognosis and this is one of the ways that we'll approach it in palliative care is if someone asked about prognosis: ask, ask, ask, ask, tell, ask, meaning "how much time do I have?" And let's say you are the right person to answer that question, right?

"How much time do I have?" "Why do you ask?" I think is one piece of it. The other is like, "is that information that you would really want to know?" Because sometimes people will ask it, but they're actually deeply ambivalent about the answer. And some of them will say, actually, yeah, it's really important for me to know.

And others will say, again, this has happened to me recently, where they say, how much time do I have? And I say, is that information that's important for you? And they say, you know what? Not really. I've made up my mind about my plan. My plan is in place. That information would just make me nervous and upset me, and we actually have a good plan going forward, and they don't necessarily want to know.

Leah: Mm hmm. Okay.

Richard: So that's another piece of it. And then you ask them what type of information they want. Because it may be that they want time. How much time do I have? But it may be what's the time that I have left going to look like? What am I going to be able to do? What's it going to feel like for me? And they're not asking you necessarily about a time based prognosis. So there's all kinds of things that people might be asking and we can explore that with them. So we keep asking them about what they're really getting at and who else they might want with them. Sometimes it's okay, you're here alone in the hospital.

Like, would you want your spouse here? Would you want your kids here to talk about this? And sometimes it's yeah. So we'll say, great, let's put a pause on it. Let's set up a time that we can all talk together. Sometimes they want, and then you answer their questions.

Leah: Yeah, that makes sense. And just on this topic of how to relay prognostic information to patients. One thing I've been most struck by during my medical training is that there often seems to be a difference between how clinicians discuss prognostic information with each other and how they discuss this information with patients. And in particular, I'm often struck by the fact that clinicians seem to use more candid language with each other and more euphemistic language with patients. So, for example, I often hear clinicians say to patients, something like "your dad is very sick." Whereas they might say to another clinician. "I don't think he's going to survive this hospitalization." And my issue with this is that I think the word sick is vague, difficult to interpret, and doesn't actually relay a lot of prognostic information about where you think this patient is ultimately going to end up.

So I'm curious if you think there are particular words or language that clinicians tend to use that can be misconstrued. And if there's language that you wish clinicians would use instead.

Richard: Definitely. I thought you were going to say the crystal ball, which is one that I wish we would retire. You know, people will say, well, how much time do I have? And I'm like, well, we don't have a crystal ball.

Like, of course, we don't have a crystal ball. And yet we can make estimates and we all have a sense of, like, is time short or are they going to get better? And I think we can relay information, even couching it with the appropriate amount of uncertainty that will be helpful to our patients and their families.

I totally agree with you about the sense of like, "they're very, very sick." If we think someone is dying, or we think they are not going to make it out of the hospital, I think it's important to share that in a compassionate and a direct way. I think we can say, I'm really worried your dad's not going to get better. I'm really worried they're dying. I think it is important to say the D word to say dying if we think that they're dying. But you also want to meet people where they're at. Sometimes there is a massive gap in people's understanding of the prognosis and what we think the prognosis is. And we can do harm by slamming them over the head with difficult information too. So sometimes if they haven't heard any of this before and we've got some time, we titrate that information, to say well, I'm worried - that may be all we get to say. I'm worried about them right now. Of course, if someone is actively dying and we need to make sense, we need to relay that information in a short period of time, but I think oftentimes we have a little bit more time not to evade by any means, not to evade or use euphemisms, but to meet people where they're at and help them get to where they need to be. We call it cultivating prognostic awareness, and that can happen over time.

Sophie: So you were talking a bit earlier about people exercising their autonomy by deferring to other people or by asking that they not receive certain information. And I imagine that for many people, they don't want to hear certain pieces of information because they want to focus on the positives or maintain hope, or they just don't want to spend their short amount of time left thinking about these things and reasonably, clinicians might want to respect this preference. How far does that go? Like, are there people where you do feel a responsibility to communicate that to them and engage them in those conversations to be transparent, even if they really would rather know nothing?

Richard: Yeah, it's a really hard question because ideally, people would be as engaged as they want to be in decision making, but at the same time, if an oncologist is going to be giving someone chemotherapy, like it's important for that person to have a sense of what's going to happen to them. So they're engaged, but also so they can say "Oh, this doesn't feel good. And I'm having these side effects and this is what's going on." So it's a balance, I would say, of respecting autonomy and also helping them participate in their care.

So you want to meet people where they're at. And then if you can slowly titrate the information, so the person who's overwhelmed, you may just share, "we're really worried" or even more gently, "Have you ever thought about what would happen if you don't get better?" So just a thought experiment and you're planting the seeds for them, so that the next time they're a little bit less overwhelmed by the idea of thinking about it and talking about it, and the next time you're like, "I know we talked a little bit last time about what would happen if we're more worried now, and how are you thinking about it?"

So just really gently and asking permission along the way. Is it okay if we talk about this, right? And just getting them there one step at a time. Some people can tolerate that. Some people can't, but most people can if you're aligned with them and listening to their cues.

I will say this also speaks to the importance, you're mentioning earlier about early palliative care involvement or early conversation. This is why it's really important. And I think, my outpatient colleagues can titrate these conversations over months, if not years. And they really help people. And I think that's where the true value of palliative care is, is allowing people to sit with it and cope with it just one step at a time.

Leah: Hmm that makes sense. Yeah, we want to close this section by asking you whether you have any advice for our listeners who may one day be patients or serve as surrogate decision makers for their loved ones about how they can avoid receiving value discordant care.

Richard: Yeah, I think one is that everyone should have a health care proxy, right? So a designated person who is going to make health care decisions for them, and the laws vary from state to state. If you don't have one, what happens? So, in New York, for instance, where I did my residency training, there's a sort of a list of surrogates of higher priority.

So people you can turn to if you don't have a designated healthcare proxy agent. Massachusetts doesn't have that. So it's left up in the air, which can be really difficult and problematic. So everyone should have a healthcare proxy. That's the first thing. The second thing though, is to have the conversations, not necessarily, I would say about exactly what people would want and not want, but more about their goals and values and what is important to them. Is like, what are the abilities that I couldn't see myself living without? How much am I willing to go through for more time? How do I think about time? Am I someone for whom every minute of life is important? Or someone who says, you know what? I would accept not having as long a life if it meant that I could continue playing golf or whatever it might be, right?

And I'm not trying to be trivial about that. Like whatever is important to that person. So those are the things that really matter. So often we present people with binary choices. We're rarely in those clinical situations. There's that great Seinfeld episode where I think Kramer's with his lawyer and going over advanced care planning stuff and they're like "what if you couldn't talk but you could eat cereal" and you could do this and he's "okay, I want that." It just points to how difficult it is to make these decisions because most people are not in the exact situation that they thought about.

And it's much more about saying knowing what we know now, and that there's a ton of gray, how can your goals and values guide us into making treatment recommendations for you. So I think that's one piece of it. The other piece is to ask is to be proactive with the doctors. Be like, what are you thinking? What should we be worried about? To ask the hard questions about prognosis too, like, how much time do I have? Or if this doesn't work, what do we go to next? I want a plan, right? And I think that is really important to be engaged in that and be very proactive.

Sophie: I imagine there's also some risk to having these conversations too early in that, when we talk about the things like, if I couldn't play golf, I would not want to live - things like this. I think it's easier when you're not sick and you are far away from these things to imagine that you would want certain abilities and that they would be non-negotiable for you, whereas later on, you might think that those things aren't as important. And so I wonder is there a risk to having these conversations with, say, a healthcare proxy or something too early on and solidifying these ideas that then might later change?

Richard: Yes, absolutely. I think it's a great point and a really important one. I think these aren't one time conversations, they should be iterative and they should be things where you check in every now and then because - so I'll use my own family as an example. And I think my mom would be okay with this, she'll often say to me "if something happens to me, I don't want anything, I don't want anything, just let me go."

And I'm like "mom hold on a sec. Let's back up here. If we could fix something don't you think we should try" and she'll say, "Oh yeah, of course if there's something fixable, then you should try and fix it and do intervention." She's like a very healthy person, really active, right?

And so she'll say, but getting at the values behind it, right? It's really important. And and I think you're right, there can be harm in having the conversations too early because the values and the decisions don't necessarily reflect the medical reality. And also, if we're talking about clinician time, it's a limited resource and I think we really need to be targeted in who we're having these conversations with and where we can make the most different.

Like, when is it most important to have a serious illness conversation? And it's not a small question. It's actually like pretty complicated, but I think we do know that not everyone should have serious illness conversations. That there are a subset of the population who probably doesn't need them. They may at some point, but not everyone all the time.

Leah: Mm hmm. That makes sense. Yeah, I also have kind of an embarrassing confession around this. So I made a goals of care document for myself after an ICU rotation because I was like, this is really important. I need to really be on top of this. And I sent it to my husband and he was like, "Okay, so just so I'm clear, if you can't write an op-ed, you don't want to live anymore?"

And I was like, okay, I guess it can be like a bad op-ed. And then you're like, okay, this is a little bit ridiculous. But I think that like you're saying this is the risk, right?

Richard: Also, societally, I think there is a risk of perpetuating implicit and often explicit ableism. I'm a relatively young, healthy person. I can think about all of these abilities that I wouldn't necessarily want to lose. But I also know most people, when faced with a change in their life circumstances, their health circumstances, adapt. So we don't want to bake in implicit assumptions about quality of life and what we'll be able to do. So I think it's a really tricky balance of like, when do you have these conversations and how do you do it in a way that allows people to grow and adapt while also not forcing them into situations that aren't goal and value concordant.

Sophie: Yeah, this is exactly why I asked. There's data about the quality of life predictions that people make about certain disabled conditions and then compared to the quality of life assessments that people with those conditions give, say, 6 months after.

Leah: Yeah. So far, we've mostly been focusing on reasons why people may not get the care they want at the end of life. But another hypothesis is also possible, which is that even in cases where someone received care that ultimately proved futile, it's possible that the care they received actually was value concordant. We want to now discuss the possibility that a lot of end of life care in the US actually is value concordant in that informed patients and their families are opting into and receiving the care that they want.

After a patient passes, it's easy to criticize the care that they received as not being value concordant or not aligning with what the patient, had they been sufficiently informed and reasoning well about their values and goals, would have wanted. For example, if a patient's fourth line chemotherapy doesn't meaningfully prolong their life, but causes a lot of nausea and fatigue, it's tempting to criticize the process that led to them receiving that chemotherapy.

Sophie: And we talked about this a little bit earlier in terms of how we measure value concordant care. We might be tempted to think that if the patient had been more informed or reasoning better about their options, they might've chosen differently. But it's possible that a lot of this care is value concordant in that patients might reasonably opt for treatments that provide a chance of prolonged survival over certain death.

To what extent do you think that the care patients receive at the end of life does align with their values and that this trade off just looks bad from the perspective of other people or after the fact?

Richard Leiter: Yeah I agree with that. I think like everything, it's nuanced. And for some people, it is not value concordant care for all of the reasons that we've been discussing. For many people, it is. And this is one thing I think that, working in a cancer hospital and interacting with the oncologists. The vast majority of them are having these conversations, they have talked to their patients in really nuanced ways. And our group has been working to train them up in serious illness communication skills. But they're talking about the risk and saying "I'm not sure if this is going to work." And yet the patients will opt into that, eyes wide open, and the care that they may receive, like you said, is value concordant.

And I think where we sometimes get into trouble is the terminology too, like what does futile care mean? And in palliative care, we think about futility as like the F word. We're like, "Oh, don't use it" because it's so hard to define what that means. Like you could strictly define it, right? It's physiologic futility. So the treatment itself has no chance of accomplishing the goal. The goal, so giving antibiotics for a viral infection, right? It's like physiologically futile, but outside of that, who defines it, what does futility mean? Sure, it may not have prolonged life to get that person out of the hospital, but maybe those 2 extra days on the ventilator gave the family some time to heal. To adjust. And it was actually for the patient, right?

We know that their family was the most important thing to them. And so that time gave the family time to come together and say goodbye and not have regrets about what happened. And the same thing with meaningful time. Like, how do we define meaningful? And I think it's very much patient centered.

So I do think that care can be value concordant, even high intensity, high cost care. It's a separate conversation about where do we draw the line of what we should and shouldn't be offering. But I do think some of that can be concordant. One study I always send to my learners is that, in a bereaved families caregiver survey, they're more likely to report receiving too little care, that patients receive too little care than too much care at the end of life. So that should inform how we're thinking about it too, that it's not always like you were saying, value discordant.

Sophie: Yeah, it's tricky because a lot of times this discussion about improving value concordant care is motivated by saying, and also it's going to be less expensive for our health care system if we do that. And that just might not be true. So that's tricky.

Richard Leiter: It might not be true. And it's hard to have that both ways, right? It's hard to say we're trying to make decisions in a way that's very patient centered while also saying we're trying to save the system money. Those may be aligned, but they may not be. And I think we need to be very clear about what we're trying to do and what type of care we're trying to deliver.

Ideally, it would be high value, both in terms of cost and high value to the patients. And I think in most cases, those align, but they don't always.

Leah: Yeah, I mean, my understanding about this also is that people have been very optimistic that, oh, if we get people better end of life care, we get them enrolled in hospice, that will be cost saving because people will be less likely to seek these expensive treatments. My understanding of that data is that's actually just not been borne out.

Like what we find is that people enroll in hospice, use hospice services, but then also are still pursuing other aggressive medical interventions that are costly. And so costs don't decrease and maybe increase. Is that a correct impression?

Richard Leiter: Sort of. Yeah, no, I think that's right. I think for some people, it is the case. For many, they will go on hospice. They receive wonderful goal concordant care and it is likely less expensive for the system. The families bear a lot of that cost, unfortunately. Right, the day to day cost of caring for someone, they may bear some of that cost. We don't necessarily see it. But although there's more and more studies that are looking at this now, and I think the data are pretty nuanced there. But I think in general, it hasn't been hospice and this whole effort hasn't been as cost saving as we had hoped it would be.

We being our entire system.

Leah: That makes sense. So we talked a bit about trade-offs earlier, and I want to return to that because I think one of the main reasons that people may receive care that appears value discordant, but actually is value concordant is because they have multiple conflicting goals. And so just to get into that explicitly, I think for most of us, the goal is to live long and live well for as long as we can.

And then have a relatively quick demedicalized death with minimal suffering. But it seems like these goals may inherently conflict forcing us to choose between them. And if that is in fact what happens then when we zoom out and look at the healthcare system as a whole, we might think, "Wow. A lot of these deaths really don't look like the kind of deaths that people want."

But it could still be the case that a patient opting into a suboptimal death is value concordant because the patient is just prioritizing other things that they wind up caring about more. Like living as long as possible. So let's get into some of these potential trade-offs. First, it seems like there may sometimes be trade-offs between trying to live as long as possible and trying to maintain what people generally consider a good quality of life. Is that your perception?

Richard Leiter: Sometimes, definitely. So I think that the classic example is like chemotherapy at the end of life. Where you have an advanced cancer, metastatic incurable. And you could undergo 3rd or 4th line chemotherapy, which may come with significant burdens in terms of quality of life.

So fatigue, nausea, vomiting, what have you, maybe it extends your life a little bit, but that time is spent in the hospital, and maybe without doing the chemotherapy, you would be able to do more and feel better. And so that's oftentimes the trade off, but it's oftentimes more nuanced than that too.

If we're talking about cancer, immunotherapy has changed the game a little bit because often, though not always these treatments are better tolerated. Right. And so you're not looking at the same quality of life trade off. Again, often, but not always.

Leah: Are there conditions where this isn't a thing? Cause like cancer seems like a case where like the canonical example of yes, aggressive treatment going to reduce your quality of life may give you more time. Seems like kidney disease would also be sort of a similar situation. Maybe not.

Richard Leiter: It's interesting, actually, people will think, kidney disease is a similar situation. But actually what we know is that in older people with chronic kidney disease who progress to end stage renal disease, that people who enroll in dialysis versus what we call conservative kidney management, meaning you're still actively medically managing their kidney disease, their symptoms.

You're trying to slow the progression, but you're not putting them on dialysis. For older patients, there isn't life extension when you put them on dialysis, and patients on dialysis spend time in health care settings, they spend it in dialysis clinics or in the hospital, whereas those who get conservative kidney management don't.

And so they are living the same amount of time, but their quality of life is actually arguably better with conservative kidney management. So people think that there's a trade off there in terms of length of life, but there really isn't.

Leah: So in those cases where it seems like dialysis isn't extending people's lives, it's making their lives worse, and it's very expensive, why would we do that?

Richard Leiter: So the system is not set up to deliver conservative kidney management. We're working to change this. Some of my colleagues are working really hard. If you look at Australia, for instance, they do have a system that's set up to deliver conservative kidney management, but it's resource intensive.

It's actually a lot easier to start someone on dialysis than it is to start conservative kidney management because you'll have nephrologists, palliative care doctors, a dietitian, pharmacist, PT, like all of these services, when you're delivering the gold standard conservative kidney management, it takes a lot of people to do that.

And it's actually for a variety of reasons, many of them sort of economic incentives around dialysis, but also clinician training and what have you, the system is set up to steer people towards dialysis, so it's going to take a big sort of cultural shift to change that.

Leah: Another trade off we wanted to touch on is that there can be a tradeoff associated between maximizing our quality and length of life and having what most of us would consider a good death.

So how real is that tradeoff?

Richard Leiter: Real, though, again, when you're thinking about a good death, I think there is media narratives, and there's the medical narrative. And I think we certainly buy into this in medicine. I think that's problematic that a good death is a death at home on hospice, out of the hospital, comfortable. One, that's not a good death for everyone. You know, the rates of cancer in young people are going way up. And so I take care of a lot of young people now who are unfortunately dying. And you know what? Parents with young kids don't necessarily want to be at home when they're dying.

They're like, I don't know how my kids are going to continue to live in that house knowing that I died there. Some make that decision. Some don't. No value judgment on my part there. But I'm just saying, like, what we see is that not everyone wants to die at home. I once took care of someone who's—I don't know—adult child had died in their home, and it was tragic and unexpected, and now their husband was dying. And we talked about getting him home. And she said, I can't do this again. I cannot have someone else who I love die in that home. And so to her, it was the opposite of a good death.

She's like, please just keep him in the hospital. That's what I want. He's cared for here and I can leave this place after he dies and go back to my home. So I think that, one part of it is like a good death isn't the same for everyone. The second piece of it is that like you said, like these are real trade offs and oftentimes we can't get someone home and make sure that they're comfortable. They need to be in a more medicalized setting or, inpatient hospice also works for that, but they need someone else taking care of them, managing their medications, what have you, and that is a real trade off that we deal with all the time.

Sophie: Yeah we touched on earlier the way in which people's values changing over time can make it difficult to do advanced care planning. I imagine it also can make it more challenging to give value concordant care. How much of a factor do you think it is in making that difficult that patients are changing their values over time?

Richard Leiter: It makes it difficult, for sure. Because I think those values are important and they guide us, but as the medical facts change, we need to be having more of these conversations, and ideally you would have that longitudinal relationship with someone, where they'd be able to say, a few months ago, I know we talked about this and this was important to you. I'm worried we're in a different place now with your disease. Can we talk about that? And then you're redoing that conversation there, you know? "Actually, I'm doing okay with where I'm at now, and I never thought that I would be okay not being able to leave the house. And it's not ideal, but I'm adapting, right?" Or "this has all been too much for me, and I don't know how much more of this I would want to go through," right? But you need to have those conversations over and over again as the medical situation changes. I will also say that you need to anchor the conversations in the clinical situation.

Meaning that, it's helpful to say, in absence of any prognostic information what are your goals and values? That's helpful. It's more helpful to say, "we're worried that time is short. Now, what's most important to you," right? Because you're framing it in the clinical reality, and that helps people prioritize as well.

Sophie: Yeah. I know that there are some debates in medical ethics about binding advanced care directives. I was wondering since you were just talking about always rooting your decisions in the current situation and also repeating conversations about care and going with whatever the patient is feeling right now.

What do you think of the view that sometimes you should respect say a patient's previous wishes, even though right now there's a person in front of you contradicting those wishes?

Richard Leiter: So I think in general we should be having the conversation with the person in front of us, but have that conversation be informed by what they've told us. I think where it is very complicated is when someone is losing decisional capacity, like people with dementia. And so a lot of the times we think about binding advanced directives like, "if I ever got in that situation, I wouldn't want that, these things." And then it's really hard if the person in front of you, even if they don't have decision making capacity, it's like, "no, feed me, give me food," like that's a hard thing. And it's tricky to navigate.

And I will say that I am deeply ambivalent, put it that way. And I think that it's hard to make a blanket rule here because the nuance and the gray matters, but I just think in general you want to do what you can to respect the person's autonomy, right? Whether they've exercised it before, or they're exercising it now, but where it gets complicated is like, how much autonomy do they have? And how do we weigh one against the other?

Leah: Yeah. My sense is that a related thing that happens is that sometimes patients lose decisional capacity. And then it's not that they're asking for something different, but sometimes their families may ask for something different than was documented in their advanced directive. And my sense is that when these situations arise, medical teams tend to defer to what the advanced directive said, unless there's some compelling reason to think that the family has additional information or the advanced directive was really outdated or something like that.

Is that a correct understanding of the status quo or what actually happens in these situations where patients' prior wishes conflict with what the family's asking of you now?

Richard Leiter: I think it's really tricky, because we'll have patients who will say, I would want quote unquote, "everything done," and the family then will say, lovingly, "We want to honor their wishes. They want everything done." And then first off, it's what does everything mean? And how do we define that? And all that's a lot of the work that we do, but then in sitting down with them over time, they may shift to say, "we've done everything," or, "let's not do this one more line of chemotherapy. Let's not do this additional thing in the ICU."

And that's okay. We want that to be able to happen like that's how the system should work. It's like someone lays out their goals and values. But within that, we should still be able to work with people and their families to help them make decisions that are not black and white.

And it's more about what are the goals and values that underlie those choices that people make.

Leah: Yeah, I guess, just to push on that a little bit. Is this a unidirectional change? Like let's say the opposite occurred. Let's say the patient had said, you know, I don't actually want to pursue really aggressive interventions. I don't want to be intubated and so on. And then they lose capacity and the family is wanting to pursue those more aggressive measures. Should the medical team still respect the family's preferences in that situation?

Richard Leiter: It's complicated and this is where palliative care, medical ethics, we're all thinking about it and talking about it and like, how do we respect that? And how do we navigate that situation? I think what we want to be really careful about is not making it like a unidirectional change, like you were saying, right?

And we really have to check our biases here. It's like, someone has capacity when they agree with us and then they don't have decisional capacity when they disagree. Like, that's not what we want in this situation. And I think for every situation, we want to take a very nuanced, patient centered approach.

And I think you do that by eliciting the goals and values and also trying to understand what the family is getting at. Like, why are they disagreeing in this situation? What is it? Maybe they weren't clear on what the directives were or they don't have the prognostic information that they need.

That's a lot of it. Or there's a ton of grief. Most of the time that's what we see. Taking care of many families, just the last few months, you know, the patient is at the end of their life receiving comfort focused care not aimed at life prolongation and then the family will say "you know what I think we should restart IV fluids" or "I think we should do this."

And it's not coming from a place of wanting to torture their family or any bad place. It is because it is so hard for them, understandably, to sit with their dying loved one and feel like they're not doing anything. And that they want to do right by the person and they want to know that they've done everything they could. And that's where sitting with them and understanding that and reframing things and supporting them and normalizing grief and that inclination to do something to help is really important.

Leah: Yeah, so let's transition to the last section of the interview because I think we're getting into some of these topics. So far we focus on whether patients are receiving care that is value concordant or not, but it's also worth stepping back and thinking more generally about when and whether patients are well equipped to determine what care is value concordant. Patient autonomy is a paramount value in Western medicine, and there are good reasons for this. Usually allowing patients to make their own medical decisions increases the likelihood of patients receiving value concordant care. But decisions about end of life care are particularly medically complex, value laden, often unfamiliar to us, time sensitive, high stakes, riddled with grief, as you were just mentioning. And none of these things are conducive to optimal decision making. And so we worry that in the name of autonomy, patients are too often being left without sufficient support and counsel in making decisions that they may not often be well positioned to make. So we wanna spend the remainder of the interview discussing the limitations of patient autonomy in end of life decision making.

I thought this quote from Being Mortal captured this point particularly well. Writing about doctors, Dr. Gawande says, quote, "We are increasingly the generals who march the soldiers onward, saying all the while, you let me know when you want to stop. All out treatment, we tell the incurably ill, is a train you can get off at any time, just say when.

But for most patients and their families, we are asking too much. They remain riven by doubt and fear and desperation. Some are deluded by a fantasy of what medical science can achieve. Our responsibility in medicine is to deal with human beings as they are. People die only once. They have no experience to draw on.

They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come and escape a warehoused oblivion that few really want." To extend Dr. Gawande's metaphor, do you think that doctors can sometimes better ensure that patients' values are realized with respect to end of life care by either stopping the train or telling patients when to get off?

Richard Leiter: Absolutely. Also, just to someone who writes like, is so good. Like, it is just so—

Leah: Such a good writer!

Richard Leiter: Such a good writer!

Sophie: That quote is incredible.

Richard Leiter: So good. And I, it's been a while since I've read Being Mortal and I really need to, it's just like the way he frames that is, is so beautiful and so clinically true.

I think there is this idea that in order to support autonomy, we let the patients decide without any guidance, right? We present the options. Here's option A. Here's option B. What do you want? And like, how can people make that decision? Right? And we've heard the comparison to like, going to a mechanic for your car, right?

And they're like "I could fix the carburetor. I could fix the brakes. What do you want me to do?" It's like, well, I don't know. I don't know anything with my car. You tell me what you think. And I think this is really important is that how do we support patients in their autonomy?

Part of it is like one and you hear me say it over and over again. It's like elicit their goals and values. But then when we've done that and then we have the clinical and medical information is we make recommendations to them. "Given what you've told me about what's important to you of being at home of spending time with your family and what I know about where the cancer's at, I would recommend we really focus on maximizing your symptom control and not doing more chemotherapy," right? They have a choice, but I am giving them my best recommendation as their doctor and that's what they're looking for from me, they're not looking for the open ended, "What do I want to do?" So I think getting back to our earlier conversation about prognosis, we can do a much better job of informing people about what their prognosis is so that they're better able to make these decisions.

I think you're right. It's like telling people when to get off the train, telling them there's a different train that they can be on is also really important. Right? I think people fear "Well, I've got to keep going because what else is there?" And I think it's showing people actually this is the other path that we have, and you're going to be cared for here. And that's what I recommend at this time. So I think all of that is critical for us today.

Sophie: A lot of patients, one of their core values with respect to end of life care is "doing everything," where doing everything is, it's relative to the options you're given. Right. So, you know, someone might genuinely believe that they prefer to do everything that they're given an option of, or that they're recommended to do, but would actually rather it not be recommended or not be made an option. And I imagine this can result in situations where, you know, doctors offer and patients choose to pursue interventions that everyone agrees are unlikely to provide meaningful benefit or change your patient trajectory. In cases where a doctor knows that a patient values doing everything that is made an option or that's recommended, when do you think they should say, you know, "this is an option, but we don't recommend it" versus not offer something at all because it's not likely to be value concordant. Or maybe to reuse the train metaphor, when should doctors say, like, "we recommend that you take this other train" versus "you have to take another train. We're not going to let you board this one. Cause it doesn't go where you want to go."

Richard Leiter: Right, right. Or that there's just no track, right? That it's not, it's, so it's not that we're not going to let you, it's that this is not, it's not a medical option. We can't do it.

Sophie: We don't run service there.

Richard Leiter: Yeah, no, I think it's, I think it's tricky. You know, because I think people rightly feel uncomfortable and feel like, well, if I'm doing that, I'm taking away this person's autonomy.

And yet the point you make is a really, really important one, is that it actually in many cases, puts more burden on people and the families and they're making decisions that aren't necessarily truly value concordant. And in those situations what they're looking for is for their narrative to be that "we did everything we could" and we can do that.

We can say "we're not going to offer CPR in this situation. We have done everything. You have left no stone unturned. We've done absolutely everything to help your dad here. And now we are going to do everything possible to keep him comfortable. And you've left no stone unturned" and we can support that narrative.

And in many cases, not always, people can be relieved by that, because we also know that there's a great deal of PTSD looking at the ICU in surrogates who have had to make end of life decisions for their family members. And so we want to respect autonomy, both for the patient and then, by extension, their surrogates.

And at the same time, what are we exposing people to when we're giving them these options that aren't really options? Right. And is it more compassionate to say, you know what, we're not going to offer that even if it's sort of veering more into paternalism, which can be a dirty word and totally appreciate that.

But I think there's a place for it in some situations.

Leah: That makes sense.

Richard Leiter: Or expertise, maybe maybe I would reframe it as medical and clinical expertise.

Leah: Also, I wish I could cite specific examples about this, but my recollection from undergrad psych is that there are cases where giving people more options causes them to make worse decisions, compared to if they had a subset of those options, and so I wonder if part of what's going on here is, is not just that you're restricting people's choices, but also that you're like actually enhancing their ability to make the value concordant choice.

Richard Leiter: Exactly right. I think that's exactly right. Give them so many options, they don't know what to do. And I think we need to do a better job of guiding people.

Leah: Yeah. I mean, I think one place where the rubber often kind of hits the road here is with respect to code status decisions. So let's get into that a little bit. And just to provide some context when patients are admitted to the hospital, they're generally asked some version of the question, "if your heart were to stop beating, would you want us to do CPR?" And for a lot of patients, the answer is just straightforwardly, yes. Like, no one thinks that they're going to die during the hospitalization. We'll do CPR if they need it. Hopefully they won't need it. And, you know, we all go on our way, but some patients are highly unlikely to benefit from CPR.

So if a patient comes in and they have a known terminal medical illness, that would be the thing that would cause them to need CPR. Then CPR could temporarily cause them to have circulation, but it's not going to provide a sustained benefit. And in these cases, the conversation is often framed somewhat differently. I've seen clinicians do things like highlight the harms of CPR by saying something like, "if your heart were to stop beating, would you want us to pound on your chest, potentially breaking your ribs to restart it?" That's one thing. Or sometimes they'll make a concrete recommendation against pursuing CPR rather than leaving this question as open ended. In cases where a clinician thinks that a patient would not meaningfully benefit from CPR, which if any of these strategies do you recommend?

Richard Leiter: So, I think certainly not that "I'm going to break your ribs and pound on your chest" - do all of these things because I think that that, you know, why are we doing that is to kind of scare people into agreeing with us. But if I were right now to drop from some arrhythmia like, do crack my ribs. I I don't care what you need to do because I think I'm otherwise healthy and I'm likely to survive and, and all of that. And to me, the ends would justify the means there. Like, think about surgery, right? People get their ribs cracked all the time. They open them up and they do all of these things because we're trying to get them better.

And so it's not effective in trying to scare people. So put that one to the side. Ideally, right, we are having these conversations over time. And they are situated within larger goals of care conversations, right? So we're talking about their prognosis. We're talking about time being short and then making a recommendation against these things because we don't think that they're going to be aligned goals.

So that's the ideal and I think that for most people that gets them there. For others, we may not. And this is where it gets complicated. It's like, do we decide to, you know, have a clinician initiated, do not resuscitate order, right? Or so called unilateral DNR.

States vary in terms of their laws. Here, some states allow it, some states don't. And some hospitals allow it, and some hospitals don't. I think those instances should be few and far between because what we don't want to do is shortcut the real work, which is having that difficult conversation informing someone about prognosis eliciting the goals and values, because that also is therapeutic for patients. However, there are circumstances where we know that it's not going to help someone. So, for instance, someone who has failing kidneys, and as a result of their failing kidneys, their potassium is high and we know that it's going to lead to a fatal arrhythmia at some point, right? The heart is going to go into an unstable rhythm and they're going to die from that. We also know for whatever reason, and there are many that they're not going to get dialysis.

We're not going to be able to fix the kidney disease in that situation. We shouldn't be offering CPR because we know that it's not going to help, like it's not going to extend their life. It's all suffering and no benefit. Yeah. Because you can't fix the underlying problem. So in that situation, I do think we should say "we're not able to do it. We're going to do everything we can to support your loved one and help you. And when the time comes that you die, we're going to support you and keep you comfortable. And that doesn't include CPR."

Leah: Yeah, that makes sense. I just want to clarify a bit what the line is between the "we're not going to offer this" and the like, "going to, you have a long conversation with you and counsel you about why we don't think it's indicated, but ultimately the decision is yours." I think that in other areas of medicine, even with regard to lifesaving care, like if a surgeon thinks that the risks of a procedure outweigh the benefits, they feel perfectly licensed to not offer it. And so CPR is kind of this exception, like it's an outlier in that we sort of allow patients to make the risk benefit decision themselves. But why do we sort of apply this different standard?

Richard: I think it's complicated. I think part of it is our discomfort with death and dying for all the reasons that we've talked about, it's hard to have these conversations. The other is that we haven't always been trustworthy in medicine about this, and we haven't always been up front, and so I think that people treat CPR and intubation, even though they're not medically different, I think the way we as a whole have made the decision in the past, have been like behind closed doors and not being straight up with our patients, and so there's an added responsibility that's been put on us to have these discussions and to think more about CPR and intubation.

So, even though clinically, they're similar, I do think there's historical reasons why that's the case. Medically it shouldn't necessarily be. I mean, I think that, you know, like, we talked about before, we should be offering treatments that will help people and not offering treatments that won't. Right? The harder part, though, is it's never a black and white because how do you define help?

Sophie: Yeah. Your reaction before to the suggestion of saying something like, if your heart were to stop beating, would you want us to pound on your chest and break your ribs, to restart it was, you know, that's just gonna make them afraid and scare them into agreeing with us. And I think that, yes, the way that that is put does induce that. But I just wanted to push back a little bit because, you know, I'm a philosopher and before I had my many friends who are now going through medical training of all kinds, I had no idea that CPR involved breaking someone's ribs. Like, just no idea, or that it was that intense or unlikely to work. You know, we see it depicted in TV and movies all the time as very likely to be successful. It never looks that violent. So I've never been in this situation, so maybe they just do tell you all this information, without saying it in a way that's supposed to scare you.

But, yeah, it does feel really important to know that, so I agree. I think, though, it's less about the act itself and more about the outcomes.

Richard: Yeah. And that people are willing to go through a lot if it's going to get them better. But when they hear that it's not going to get them better, they're far less likely to want to go through it. So I actually think in terms of like, effectiveness of these conversations, we can take that picture.

Most of the time, that's about our distress doing it and not necessarily for the patients and what information is going to be helpful for them. So like, we don't necessarily know, but I think your point about that study what's seen on TV, my boss did that study and it was like, ER and Chicago Hope, I think, you know, so great medical shows, by the way, from the nineties, like, they're awesome. But most of the patients survive CPR. And so that's the sense that people get is that, "Oh, I'm going to be fine. I'm going to walk out of the hospital. I'm going to wake up 10 minutes later." And we know that that's not the case. But I think that's the piece of it that's really important for people to understand is that it's not actually going to accomplish what they're hoping it's going to.

Leah: Yeah. I mean, I guess, just to return to the point earlier about the patient who has high potassium from kidney disease and that that's going to be an irreversible cause of their arrhythmia. Do you have any sort of rough heuristics you can give clinicians for thinking about what patients are the potassium example and what patients are the like, "yeah, you are probably not going to benefit long term from this, but we should still give you the option." Like how can we divide that space?

Richard: I don't think there's a bright line that we can draw. I really don't. And in fact, I worry about doing that because I think what we've also seen. So, if you look at COVID, for example, there were a lot of situations where the hospitals put into place protocols where you wouldn't offer like CPR for patients with COVID.

The decision making was so fraught and we didn't know a lot. And there was also considerable clinician risk. Right? It's like, is this going to be spreading virus everywhere? You're going to have like 40 people running into the room. Are they all going to get COVID too? So the decision maker was a little bit different.

But people were using more clinician initiated DNRs during COVID, and we saw differences that white patients and families were less likely to have a unilateral, clinician initiated DNR order placed than Black and Latinx families, Latino families, and we don't know if that's a disparity or a difference because we don't know what should have taken place there.

But those are really important things to think about. And I think that what we really don't want is our biases to play in here. And we know that they always do. And so if you have a bright line, you don't want someone in the middle of the night making the decision on their own.

These are complex, high stakes decisions that we should be having in a group and saying, what do we really think the best thing is here? How do we approach this family? What's important to them? Should we be taking this off the table? Or should we make a recommendation or what have you?

So I hesitate to say they're like, very clear cut situations. Each one feels a little bit different.

Leah: Yeah, that makes sense. Something that I've seen in my training I thought was interesting. So typically a patient can be "full code," like we'll do everything, we'll do CPR, we'll intubate, or maybe they'll just be intubate only and not get CPR, or they'll be DNR, DNI, like we won't intubate them, we won't code them. Recently I saw this documentation that was like a fourth checkbox. It was "I defer to the judgment of my clinical team." And that struck me as super reasonable, if potentially complicated for the clinical team, where the patient was just like, "frankly, I don't know what is indicated and I trust your guys's judgment. So do what you think makes sense." What do you think about that as an option?

Richard: I have not seen that before. I would say with code status in general there's sort of a tension between clarity and what people need and always the question is like, what's going to happen overnight tonight and what do I tell the intern who's taking care of the patient tonight when, you know, they're tired, but they're they're awake and they're, doing their thing, but it's the middle of the night and there aren't as many people around and we have to make quick decisions. Like you want clarity there versus I think how nuanced these conversations can be. So I think it's really actually like, kind of interesting to say, you know, "I defer to your judgment here." Again, though, you would hope that the judgment it's not a snap judgment and is based on nuanced conversation about what's important to the person, what their goals and values are and what we think is clinically going on, which is like, really hard to do in the middle of the night. So I just think everything is harder when there are fewer people there, and you have to make snap decisions. So I think the intent is a really interesting one. The practicalities are more complicated, I think.

Sophie: So we've talked about families experiencing guilt associated with making end of life decisions about their loved ones. And on the one hand, it seems especially important when making life or death decisions to preserve a patient or a surrogate's right to make that decision for themselves. On the other hand, as we mentioned, this seems like a place where paternalism, not putting an option on the table that the doctor thinks very unlikely to take them where they want to go might prevent a lot of suffering. In your experience, what helps surrogate decision makers not have that kind of significant guilt or PTSD?

Richard: So the relationship matters, knowing that I'm giving you my best recommendations in a terrible situation, and I'm going to be here with you. And it means trying to minimize the conflict. I think we can oftentimes get into a sense of like, therapeutic nihilism, right? Well, this person's not going to get better. So from the moment they get to the ICU, that's the message that I'm pounding to the family. You're doing the wrong thing. You're causing suffering, all of this, right? You're increasing the risk of PTSD because they're like, "Oh, they didn't make it. And I led to suffering and I'm not making the right decisions" and all of this stuff as opposed to like, "we're really worried about them. We're going to be here with you. Let's support you through this and let's see how things play out." Right. They may still have trauma from this, but I think sort of that therapeutic alignment goes a long way.

Getting to know them and supporting their narrative too, I think is really helpful. Like we talked about before, right? Supporting that notion like "you have done everything right and you're leaving no stone unturned." And on top of that, "I'm worried they're dying," right? Is very different than saying "you're torturing him. We need to stop."

Like, communication can be therapeutic. And I think we can still make difficult recommendations to people, even taking things off the table, but we can do it in a compassionate, therapeutic way for people. I will also say that it matters what happens afterwards. Are they getting the bereavement support that they need? And we have some programs in place, and I think hospice does this really well. And we're increasingly bringing in hospice for patients who are in, even in the ICU at the end of life, so that they get more robust bereavement services and sort of grief supports after their loved one dies. So I think that's a piece of it too, is like, what supports can we put in place system wide, to help support people after their loved one dies? We can't just think of the moment of care as being in the ICU.

Leah: That makes sense. Yeah. I mean, I think one thing that sort of strikes me as different between palliative care physicians and other physicians is that I think palliative care physicians often really see their duty of care to this whole family unit or the whole group of people who are supporting a patient versus I think, other physicians oftentimes are really focused on the duties they have to the patient and less concerned with sort of how to support all the people around them.

Like how can we sort of understand our obligations to loved ones and to families relative to our obligations to the patient?

Richard: I think it's a great question. I mean, I think our obligation is to the patient in terms of decision making, but patients exist within family systems. So oftentimes it's not a trade off between do I treat the patient and do I treat the family? So I think that's the first piece of this is recognizing that oftentimes they're one in the same. I'll also say that, like, I have the luxury of time as a palliative care physician, and an interprofessional team, which is key, right? It's not only physicians. We've got colleagues with nursing backgrounds who are often better trained than I am to attend to these sorts of needs.

It's spiritual care, social work, right? We have a whole team of people dedicated to supporting this family. Like, it is so hard these days being like an ICU doctor or an oncologist. I mean, just the cognitive load on all of them, right? The things that they're trying to manage to keep the person alive in front of them or the clinical trial or what have you, it ends up being a lot.

So I think the second thing is to draw on the interprofessional team. I may not have the time to deliver that psychosocial support as the ICU clinician. But I have a social worker who works on my team who can, or I'm going to find a place that has good palliative care. We need more palliative care, you know, public service announcement, but I think, like, to call us in or to call, "this is a religious family, let's bring in spiritual care to help support them." So there are all kinds of things that we do that even if it's outside of your wheelhouse, you bring in the robust supports to help. And I think that's really important to like, no one expects you to do it all by yourself.

Leah: Do you have any other general words of wisdom for doctors who are grappling with the kinds of situations we've been discussing today?

Richard: So one of my ethics professors, Katie Watson, she's a lawyer. She's fantastic. She taught us a class on ethics and the law. And the first thing we read was actually Antigone, the Greek tragedy. And like everyone dies at the end. And so often we are faced with these just really, really terrible situations where there isn't a right answer and there isn't a good answer. And we try and navigate our way through it, but it's not like any of this is going to feel good.

And I think that's really important to keep in mind, is that as we try and think about these nuanced things, so much of this, there's tragedy, and we're going to be there to support people. And there isn't always a good answer. And there isn't always a right answer. And I think that's important to keep in mind as we think about these things.

Leah: That makes sense. Yeah. So we like to close by asking our guests what is one rule or norm broadly related to what we've been talking about today that you would change if you could and why?

Richard: We touched on this a little bit already, but that dying at home is the gold standard. It is not and should not be. I think it is more nuanced. Some people want to die at home and are able to die at home. That's great. Some people don't want that. We need to support them, too. And it is not wrong for someone to not want to die at home, and there's not a failure on anyone's part if someone ends up dying in the hospital. I think that for a variety of reasons, the way the hospice system is set up and the funding, which they're woefully underfunded. Like, we don't have the resources to support people in care settings other than home, but if we start to to say, well, home might not be the gold standard anymore, it allows us the freedom to reimagine where else people could die and to say, well, let's put other supports in place and let's fund hospice facilities more and let's do more in the hospital to make dying in the hospital better. So I think getting rid of that norm is really important actually for advancing end of life care and what is possible.

Sophie: Great. All right. Well, let's close there. Thank you again so much for coming on the podcast. We really enjoyed this conversation.

Richard: So did I, thanks so much.

Sophie: Bio(un)ethical is written and edited by me, Sophie Gibert and Leah Pierson with production by audiolift.co. If you want to support the show, please subscribe, rate, and review it wherever you get your podcasts and recommend it to a friend.

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