#354 – What the dying can teach us about living well: lessons on life and reflections on mortality | BJ Miller, M.D. and Bridget Sumser, L.C.S.W.
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Hey everyone, welcome to The Drive Podcast. I'm your host, Peter Attia. This podcast, my website, and my weekly newsletter all focus on the goal of translating the science of longevity into something accessible for everyone. Our goal is to provide the best content in health and wellness, and we've established a great team of analysts to make this happen.

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My guests this week are Dr. BJ Miller and Bridget Sumzer. BJ is a hospice and palliative care physician with expertise in serious illness, end-of-life issues, and death. He is the co-founder and president of Metal Health, an organization providing support to patients and families living with illnesses. And he was a previous guest on The Drive all the way back in November of 2020.

Bridget is a licensed social worker who specializes in helping people with serious illnesses, promoting connection and well-being, and working with patients and their families during end-of-life periods. In addition to her private practice, she is a provider at Metal Health and the Palliative Care Program for Adults at UCSF.

I wanted to have BJ and Bridget on to have a conversation to explore the insights gained from working with people at the end of their lives. What do they reflect on? What do they find most important? What I really wanted to understand here was what can the dying teach the living? In this episode, we discuss the physiological and emotional processes of dying. What happens as the body shuts down and how families interpret those changes.

Why our cultural aversion to discussing death leads to unnecessary suffering and how acknowledging mortality earlier in life can be empowering. The differences between palliative care and hospice and how our healthcare system often delays comfort-focused care until it's too late.

What suffering really means, how it's not just physical pain, but a threat to one's identity and reality. The importance of honesty and emotional courage at the end of life and how dying can bring profound emotional, spiritual, and relational clarity. Insights from decades of working with people who are encountering their death, what patients regret, how they grow, and what really matters in the end.

We talk about this idea of how people die the way they lived and why cultivating emotional, spiritual, and relational awareness while we are alive shapes how we die probably more than anything else.

We talk about the role of forgiveness, acceptance, and connection in dying as well, especially self-forgiveness and the ability to be with what we can't control. And ultimately, we talk about what the dying can teach the living, not just in terms of how to die, but perhaps more importantly, in terms of how to live. So without further delay, please enjoy this discussion with BJ Miller and Bridget Sumster.

BJ, amazing to have you back again. And Bridget, great to meet you for the first time. Thank you guys both for coming out here. BJ, you and I go way back. You're a previous guest on the podcast, and we've spoken a little bit about some of the topics we're going to get to today. But when I reached out to you a few months ago to talk about

this idea, you immediately suggested bringing Bridget along. So let me just share with folks what I wanted to talk about. And I would love for you to share why you felt that this would be a great three-person discussion as opposed to a two-person. I reached out to you and I said, look, I want to understand more about living. And I have an idea that we could learn a lot from people who are dying. And people who listen to this podcast know that

I think that quality of life matters as much and potentially more than length of life. And a big part of that probably comes down to things that people think about during their life and during the end of their life. And maybe that there are regrets that people have that only surface at the end of life. So anyway, I kind of ran this idea by you. Actually, I think I ran the idea by you as do you even know anybody that would have thoughts on this? And you said, I'd love to talk about it. And so, yeah.

Well, first of all, thanks for having us, Peter. It's good to see you, buddy. And I just love the setup for this conversation. I think we're very happy to be talking to you in general, but also to continue to form the, it's not quality of life versus quantity of life kind of false dichotomy that you've done so well to re-approximate. So we're really happy to be here and talk about this stuff.

But why Bridget? I mean, so for me, a couple of thoughts. I mean, one is I just love Bridget in her mind and we get to work together in myriad ways over the years. And the subject, you'll hear us again and again, we're going to thwart the idea that there's an objective and approach to death that is the way to go. You're not going to hear us citing much data.

It's an easily studied phase of life. What data do exist tend to be qualitative. With all that subjectivity, it feels really important to have other voices sharing their point of view on sort of a similar outlook. So that's in part why I bridge it. And also too, for both of us, I just want me to speak for you, but I think one of the things we should get up front too is my work in the last four years has pulled me farther away from being at a bedside.

But both of us have spent many countless hours in hospital bedsides and other places that we'll be drawing from. But I think to get to the questions that you're interested in answering, so much of the work preparing for dying begins earlier in life, one way and another. So the idea that I think for your audience to imagine deathbed scenes that in the final moments, there's this great epiphany or climax of some sort.

can happen, but that's really not the norm. A lot of the action is in the days, weeks, months, years preceding the death moment. I mean, death is a moment.

And so one thing I think we want to get across as you've brought quantity and quality of life, we need to bring dying and living together. They are part of a whole. They're not at odds. And so when do we begin dying, Peter? The second we're born. Exactly. So in some ways, all of us have some access to the subject already.

Bridget and I are just a little bit closer to it on some level. Bridget, what drew you to this space? I'm sure this is a question you get asked the moment people find out what you do. It is an uncomfortable place to stand. What's drawn you to it?

You know, we all have our places in the world. And while this is an uncomfortable place, maybe from the outside, for me, it is a pretty comfortable place. And that was what got me there. I had many people in my life die, and I was in pretty close proximity to those deaths, and I wasn't freaking out. And so there was something in me. I looked around, and a lot of other people were freaking out. And I was sort of like, oh, this is weird. Am I

unaffected? Am I guarded in a way that makes it some kind of numb? And no, actually, it was more just that there was something in me that was okay around dying and also really curious about it. So that's how I got to this work. Can you say a bit more about that? If you're comfortable, what were some of the experiences you had growing up? My cousin...

Kristen died when she was 13 and I was 18. She had pulmonary primary hypertension. I was with her the day she died. And as you can imagine, a 13-year-old dying is a pretty chaotic scene. She was not in a like official dying process that anyone was recognizing. So it was crisis-y and traumatic. And there was just a stillness in me. I mean, I was very affected.

There's a lot of emotion. I felt fear and overwhelm, but I also felt really able to be there. For others? I was 18 and the adults around me were, as you can imagine, all over the place. And so it was less about others, although I felt quite connected to her. It was more about being able to be myself.

like stay in my own body and be in my own experience and pay attention to what was happening, make contact with what was happening. So it was a pretty internal experience and awareness. It wasn't until later experiences with one of my best friend's moms a few years later that I felt sort of that capacity in relationship to others as like a main supporter. That first imprint was really like, there's something in this experience for me.

PJ, people who listened to our first episode will be familiar with your story. Invariably, there are a few people here who aren't. You want to give the Super Reader's Digest version of your story and how it probably shaped a lot of what you do today? For sure it did. I went into medicine very simply because I had been a patient. It's not like I was preordained to head into medicine or I had never even considered it. But at age 19, sophomore in college,

Around the time, Bridget, you're having your experience at the bedside one way or another. I was in the bed thanks to an electrical injury at Princeton. I was screwing around on a

commuter train and climbed up on top and I had a metal watch on my left wrist and the electricity arc to the watch. That was that. So I came very close to death. You could say part of my body died. I lost both legs and one arm, part of them. And so that was a really big wake up call. For people who aren't familiar with that type of injury, I've seen you without a shirt on. It's not like, oh, we just cut these things off and you'll be, we'll be home Friday and we'll see you at clinic next week. That's not the case.

The magnitude of these burns, the skin grafts that are required. How long were you in the hospital? I was in the burn unit for about three months. So, burn units are a horrible, they're just a special place. It's not, I don't know what to compare a burn unit to for the patients or the people providing the care. It is very, very special people in those units. Yes. And careers tend to not last very long for a lot of reasons. These are houses of pain of a certain kind.

So anyway, three months in that particular setting, which says a fair amount to your point about the complexity of electrical injury. I mean, that means I was on the edge for about three months. Did you lose kidney function? I

I don't recall that. I don't recall that. I wouldn't be surprised if it was dinged. I remember looking over at the monitors many weeks in and my heart rate was 190 and just sitting there. There's a lot of fallout from an injury like that. And it takes a long time for the body to settle in and declare what's going to live and what's not. So the amputations were sequential. They take a little bit to see what tissue is viable.

All the while, the risk of the way generally people die from burns is infection because you lose immediate defenses to your line of defense of your skin. So hyper sterile environment, no windows, nothing natural about it at all. Anyway, so that went on for a long time until I was out of the woods. And then it was clear I was going to survive. And then becomes the sort of longer work of

learning to cope with this new body entailed a lot of mourning, a lot of grief, a lot of effort, a lot of creativity on my behalf, as well as a lot of people around me. So it took many, many months to get out of that setting from the burn unit into a step-down unit and then into a rehab unit and then outpatient. And then begins the work of re-entering the world. And that's its own challenge with a visible disability. And as you say, the skin grafts, I was

I used to be so ashamed of that look. I used to cover it up. There was the work of getting used to it and being comfortable in my own skin, literally, again. And that took about two years before I was willing to show anybody this. Five years again hit another milestone for me just sort of being comfortable.

inhabiting my own life again on some level than being anything other than an object to glare at. So anyway, there's a lot to say about it. It's a very slow process and it's ongoing. I recently had a procedure. We don't need to go into details, but it's fallout from a central line that was being placed in my neck that got botched and clotted off. And 35 years later, I had fallout from that. So it's an ongoing process.

process all the time. I get new legs every two years or so, and that's its own process. So it does not end. So a moment ago, you alluded to the idea that movie deathbed scenes are probably the exception and not the rule. I want to kind of explore this idea a little bit more, but I also want to help people maybe understand the

at the population level, what death really looks like. So on this podcast, we talk a lot about causes of death. People who listen to me are very familiar with the four horsemen, and we know about cardiovascular disease, and we know about cancer, and we know about neurodegenerative disease, and we can talk forever about these things. But we don't really talk about the very, very end, perhaps with the exception of a fatal myocardial infarction.

And about 50% of MIs are fatal, but about 50% are not. And they're just setting you up for maybe heart failure or something else. So as difficult as it is, I'd love for you to sort of explain the mechanics of death. And we can start with the more common cause of death, which is cardiopulmonary death. We could talk about brain death after, but I'd love for both of you to sort of describe

what's happening both medically, socially, cognitively to the individual through that process. Peter, do you mean like the moments leading to the death as a body shutting down? Yeah, in those final hours, what is really happening? What does it mean to die of cancer? You know, I think for many people, it's a very foreign idea that this woman had breast cancer. Okay, there were cells in her breast that all of a sudden acquired mutations,

Those cells escaped from her breast and went to other parts of her body. But there's still a bit of a disconnect. Why did the invasion of those cells to her bones and her lungs end her life? Bridget, you want me to talk a little bit about sort of the medical physiological stuff? Yeah. And you can talk about some of the social. Does that sound right? Yeah.

Starting with the sort of more cut and dry anatomical, physiological things happening as a body's trying to die. And I like that phrase, trying to die, because we often find ourselves intervening in a body that's trying to die. It is one thing to get right out of the gates here is bodies die, living things die. I think a lot of us absorb a notion of death that it's some foreign invader or something that comes out of the woods and grabs us. And otherwise, I was just fine and then not.

No. And as you know better than any of us, there are all sorts of things we can do to promote life. And there are a lot of ways we're wired to hang on to life and to run from anything that's a threat to us. Those are all true and all natural, but included on the list of natural things that we do is die. That's what a body's supposed to do. I just want to get that clear. There's nothing wrong with you for dying. This is the way it's supposed to go. So your body knows how to do this.

So let's talk about what the body knows how to do. I mean, in general, depending on the cause of death, whether the pathway might be cancer, as you're mentioning, or heart disease or neurodegenerative diseases,

There's a final common pathway of a body kind of shutting down. And it tends to shut down by organ system. And it doesn't follow a neat and tidy pathway. It can happen spontaneously in a kind of a moment. They're here and then they're gone. But very often, especially these days, most of us, like 80 plus percent of us, will die of chronic illness. We will meet the thing that eventuates our death well in advance of the death.

So we'll get that diagnosis that someday will be the thing that ends our life. We could talk about that. That's its own ball of wax that comes with that fact. Whereas in the old days,

Many of us, most of us died more spontaneously. You're very alive and you're very dead. Not a lot of in-between. So in this in-between thing, to get to find your question, Peter, is this sort of shutting down phenomenon. So oftentimes, if we're trying to prognosticate, help a person or family get a sense of how much time is left, we're looking at things like, are they in and out of bed much? Are they getting up and out of bed?

So if you're asleep on the couch or in the bed 50% of the day, that's sort of a progressive process, more and more fatigue, more and more tired. That usually in the context of chronic illness tells us we're heading towards the end. An interest in food and fluid is a big one. So a body trying to die, a GI tract that's on its way to shutting down will stop sending hunger signals. And this is a big one for the audience to hear because a lot of us

Food equals nutrition, equals nourishment, equals life. So if we see someone we love or ourselves not eating, the impulse would be, well, put some food into us. That's life. I don't want someone to starve to death is often what we hear. And also love, right? Yeah. That's how we show our care. Exactly. Symbolically, the act of feeding another is the nourishment, the love, to your point, Bridget, comes with that. There's so much around food.

But before we cut over to bridge to explain more of that piece of the puzzle, you know, the body again is sending you a signal. Don't put food in me because it will hurt. If a gut is not able to process the food, it sits in place and can cause pain. Same with fluids. If we're forcing fluid into a body that's trying to die, that fluid will pool and cause trouble.

So the judgment call when to push the food and fluid and when not is up to really a dialogue and a song and response with the patient. You might try a little bit of fluid and if that ends up in their lung or ends up swelling, then we pull back. But back to your question. So as a body's trying to die, it will stop sending signals for food and fluid and that's to be generally respected, not pushed past.

Mental status. So people often get really fuzzy in their thinking. Delirium is very common. So oftentimes they'll be disoriented, think it's 1912 and they're in a forest somewhere when they're in a hospital bed. So that's very common. And BJ, delirium is not uncommon in the hospital. A lot of times with otherwise very healthy patients who are in the hospital to get surgery, the

The loss of circadian rhythm, the use of narcotics and other medications can easily induce delirium in a person who's otherwise not going to die. Is this a different form of delirium and what is really underpinning it? I don't know that it's a different form of delirium per se.

It's a similar pathway in that it looks the same. So you can have a hyperactive delirium, which are very easy to spot. Someone's jumping up and down on their bed and going nuts and acting in a way that's not comporting with the context of sitting in a hospital bed. So hyperactive delirium can be easier to spot. Very often it's hypoactive delirium, which we often miss, especially in the hospital setting. Might just be a little tangential thinking or not quite clear on what day it is. Something that's not so obvious. And very often the person's just silent.

And that's more often the case, I'd say, at the end of life. It's more likely to be a hypoactive delirium. And so it may be hard to spot. And the person's been sleeping a lot anyway, so you might miss it.

But one reason to bring it up is because if you don't know what to look for, I think a lot of family members and loved ones will be at the bed trying to eke out every last moment with this person and looking for clues about what's going on for them and last relational moments and exchanges. And very often I've heard from a lot of people reports of, well, gosh, my husband never said a mean word to me in our 50 years of marriage.

And I've been traumatized for the last two years since he died because those last words to me were this vulgar something or other. Or he told me to get out of his, you know, some harsh comment. Oh.

One of those big takeaways for your audience, just please keep delirium in mind, because what it also means is that person who is delirious. It's not themselves. They are not themselves. So whatever they're saying, you really cannot take it literally. You really cannot take it literally. So that poor woman that was suffering for, you know, if someone had told her about delirium, then she would have understood. She took it very literally and was suffering delirium.

immensely. So anyway, that's a note about delirium. It does feel like an important moment to pause just to

Note a couple of things, which is delirium at the end of life, we take as seriously as we would in a more acute setting where someone's in the ICU with expectation to recover. And we think about environmental factors that influence delirium, like lighting and noise and interruptions. Because if we can minimize delirium, we want to. We want to treat it and care for it. I think the other thing about this space is that we enter into the like rich and nuanced space.

and complicated space of interpretation and the meaning that's being made around what's happening. So in that story, I was sitting at a bedside once with two daughters and their mom was dying.

And she had been mostly quiet, hadn't really talked in a couple of days. And we're sitting there talking about her and telling stories. Her kids are telling me about her. And she opens one eye and she kind of sits up and she says to her daughter, I love your jacket. And I looked at the daughter and the daughter just bursts into tears. I'm sitting there thinking like, oh, this is so nice. I'm expecting something positive. And the daughter's like,

She's never complimented my clothes before. If anything, she always looked at my dress in this critical eye like this is so off. And I think that could be one of those projections that we're going to get to the end and dad's going to say mom's going to say the thing that we never heard them say. And they may. And that might not feel good. It's complicated and so interpersonal and personal and subjective and

It's one of the reasons why two of us being here together and why this work is done often in teams, because we could both be in the room with the same person and have very different kind of hits or interpretations around what's happening, what's most important in the room, what needs to be tended to.

There's so much to say about this stuff and that delirium thing on this point of altered consciousness and what people are saying, what's coming out of people. It's also true that deep, dark secrets can sometimes get revealed. That's also true. So much needs to be interpreted and it's therefore held lightly. These are final moments. You may never get the clarity of what mom or dad or that person actually meant in that comment, which is another trick to holding death in our living environment.

is to hold it lightly. We will find ourselves wanting to apply a story of meaning on all of this stuff.

As humans, what we do. But one of the great lessons around this work is just to hold that carefully and lightly. It's not always what we think it is. And on that note of delirium, too, I will say as a medical person, I was taught that delirium is inherently a kind of suffering, that it's uncomfortable, that to be confused, to be disoriented is itself uncomfortable and is certainly problematic for the loved ones.

So we always medicated it with antipsychotics, haloperidol and others.

Thorazine, just shut it down. I will say my own arc of my career, and I've sort of diluted the medical piece with other ways of thinking, I'm not so quick to shut that down. There may be something either vital happening for that person in the bed to express whatever's in there. It may be something that's helpful for the person to hear. I gave you the counterpoint that it's hurtful for a loved one to hear in a decontextualized way.

But I think one of the meta messages here is dying can't always be, shouldn't perhaps maybe to use that hard word, be so tidy and immaculate and clean and perfect. I want to disabuse, I think we'd both like to disabuse that notion of that that's a good death, a quiet death, a

I've increasingly would not medicate a delirium unless I had a conversation. If you were my patient, I'd say, Peter, hey, there might be moments where you can get a little confused, et cetera. And if that happens, would you rather, maybe there's an opportunity for me to ask you, would you like us to kind of err on the side of medicating that and help you sleep through it or talk to family about that? But the bottom line here is it's not such a one-to-one thing. When we see this, that means suffering. That means medication. It's much more mysterious than that.

One of the things I've been thinking a lot about lately is how people died hundreds of years ago and thousands of years ago.

So let's use thousands of years ago before the advent of any medicine at all. So admittedly, they weren't living that long. And admittedly, life expectancy would have been into the mid to late 30s. But people always confuse that for meaning nobody lived beyond that. Of course, that's not true. It just means so many people died young. Infant mortality was through the roof. Tons of trauma and infection.

But clearly there were people that were living into probably their 60s, and I'm sure some of them were dying of cancer. So I wonder, absent any medicalization of death, what death looked like then. Do we know anything about this? I mean, I don't from the books. I mean, I can imagine.

And I think we knew that people died more acutely. But to your point, that's probably because they just didn't know they were harboring a tumor or atherosclerosis or whatever else. And I think an average human had a different relationship to the day-to-day suffering and pains that went with being alive.

And I think modern life has tempted us with the idea that we could always be comfortable and that pain is a problem to root out and fix quickly. Get back to the norm, which is comfortable always, which is just crazy talk.

So I think part of it is we've induced people's pain by offering these fixes to them. By virtue of having something to offer your suffering, we might be more primed to tune into our suffering and seek that fix for it. And we've pulled this ourselves forward over time through modern life in such a way that back in the old day, I don't imagine that people were so distracted by their daily aches and pains anymore.

So I'm kind of getting off your question. I don't think we know, at least among us, I don't think we know from a historical, like I couldn't tell you factually what used to be the case.

But watching patterns and knowing that human nature hasn't probably changed so much in the last couple hundred years, per se, I think one is that people harbored a much—that lived closer to death and lived closer to pain. And so in some ways, they suffered less because it wasn't tainted by a sense of injustice or why me. I'm projecting. Which is an irony because as I think about a person dying in their 80s today—

I think of that as kind of a remarkable privilege that we could be alive in this period of time where we could make it into such an old age. But yet at the same time, it feels like a tragedy, even though ironically, the tragedy is those people that were dying thousands of years ago. I want to ask you a question, Bridget, unless you wanted to say something else about that, but I was going to ask you a question about pain. Please. Okay. So when you're talking to somebody who,

who makes the decision to enter hospice care or palliative care. I want to come back to making sure people understand the similarity and difference. Let's take an example of an individual who is cognitively completely intact, but is faced with a terminal illness. And let's maybe even talk through different examples. Somebody that's got something as debilitating as Lou Gehrig's disease, where their mind is completely intact,

and they're suffering a neurologic disease that's going to kill them versus an individual with a cancer that has metastasized and is just a matter of time. What are their greatest fears when they come to you? And where does physical pain and discomfort rank on that list?

I mean, it's such a humbling question. It's a little bit hard to answer when you put something like Lou Gehrig's disease and cancer next to each other. Pick one and let's talk through it. Yeah. I think the thing I want to say sort of before picking one is the path that gets you to the intersection where you are thinking about entering hospice or able to tolerate that idea is very different, as you know, if you're facing neurologic illness or cancer or heart failure.

The experience that patients and the folks around them have had may be quite short, may be a decade, may be with really successful treatments, may be this downward feeling slope the whole time. And so you're really primed, I think, in different ways at that intersection, depending on what this last chapter has said.

been like? Have you been mostly healthy and felt pretty good and something happens quickly? Have you been in and out of the hospital sort of in this endless cycle? You're holding very different experiences and people have honed their muscle of adjusting and adapting and adjusting and adapting very differently depending on their experience of the illness they've had.

It's also really, really colored developmentally depending on where that person is in their life. Are they 42 with two young kids? Are they 85 having lived a life they feel pretty good and full about? And so those are a few of the layers of context that really inform development.

Given how much there is to unpack there, and now I realize I want to go into all of that, let's take the step back and help people understand the difference between palliative care and hospice care. So I sort of think of it as palliative medicine is the big umbrella. Palliative care is the big umbrella, and hospice care is the very end or the backside of the umbrella. Palliative care is a medical specialty usually provided by a team for folks with a serious illness.

Serious illness can be defined lots of ways and is defined differently in different health systems, depending on how they're staffed and how their palliative care programs are created to function, what purposes they're serving. But some of the, and BJ, you jump in at any points, but some of the big differences is that with palliative care, generally, there's no limitation around any disease-directed or modifying therapies you might be pursuing. And you don't

have to be dying inherently or even clear that you're facing death. You could be diagnosed with a very serious cancer that actually has pretty robust treatments and you could live for quite a long time. Meaning many, many years. So in that situation, what is the objective of the palliative care team?

To think really holistically about who is this person? Where are they in their lives? How do they make sense of what's going on? What do they understand about their illness? Who's supporting them? All really grounded in this, are there ways that we can help this person feel sort of as well as possible? To treat the symptoms related to serious illness, to treat the symptoms related to the treatments of different serious illnesses.

but in the context of a whole life, which means on a clinic day, you could be seeing two people that seem on paper generally the same, similar age, demographic backgrounds, diagnoses, and be dealing with really different things when you walk in the room.

No matter how you slice it, the goal is, the focus is quality of life, period, whether it's palliative care or hospice. And by the way, for both Bridget, so it's inherently interdisciplinary, as Bridget was saying. That's why Bridget's a social worker and I'm a medical doctor, but we work with chaplains, nurses, music thanatologists, potentially art therapists, volunteers. When the subject matter is suffering and quality of life, there's no one discipline that has a lock on that stuff. But whether it's palliative care or hospice, the focus is really on

Helping someone feel as well as possible. And that is an inherently holistic question because it gets at their identity. Yeah, it's as well as possible as defined by them. Yeah. And so for someone that could mean very aggressive pain management. And for someone else, they could have a different relationship to the experience of pain. And they wouldn't put that at the top of the priority list. They might put more concrete or relational supports. Yeah.

higher up on their list. The beauty of our jobs and our work is to meet this person in this moment in time and identify what's up for them, what's most important, and where it is that we get to meet them to work towards quality of life as defined by them. So what is the transition then for an individual from being under the broad umbrella of palliative care into a more narrow defined level of care as hospice?

I mean, I think there's some world of ideals in that. And then there's what actually happens. And the reality in this country is that folks are admitted to hospice very, very late. The length of stay on a hospice program in this country is something like a three-week average. And so it's actually quite little bit of time. And when I think about when hospice is a good fit for folks, I think about...

Wanting to stay out of the hospital, being in a place where they are ready to or being forced to grapple with the reality that there is not anything left to do to change what is happening in their body, to change the cancer, to delay the neurologic illness, and or folks that are more explicitly ready to be supported in their end-of-life care or in their transition.

And just done with chasing the treatment, done with chemo. The chemo might have something more to offer them in terms of lifespan, but they are just electing to be done with that. Whether chemo and other things have run their course and there's nothing left to try, which is often the case. Or they feel done with what's left to try. They're telling us that they don't want to try anything else. Either way, they would be much more likely to be hospice ready. Now, you're saying the average length of stay in hospice

And really there are, as I'm aware of it, so correct me if this is not correct, there seem to be three paths to hospice. There's hospice in your home where you go back to your home and a hospice team comes there and cares for you in your home.

There is a palliative care ward inside a physical hospital that provides hospice care, but it's still within a hospital. And then there are outpatient hospice facilities, dedicated facilities for hospice that are not hospitals. Would those three encompass how hospice care is delivered? Or is there another one? Sort of, in terms of sites of care. This is where it starts to get really wonky. It's complicated. It's complicated. And you can shut us up, Peter. There's so many different, there's so many tributaries.

But to back up a little bit, it may be orienting for your audience here. So Bridget's totally correct. Palliative care is the larger umbrella. Hospice is the subset of palliative care devoted to the final months of life. So to be real clear, same philosophy in a lot of ways, but by insurance and reimbursement lines and by policy designation, you can get palliative care alongside curative intended care.

You cannot do so in hospice. When you go on to hospice, you have to give up that curative intended care. And not just that. I mean, you can't have an IV line. Generally speaking. So the way it's set up is a crossroads. We'll make the point that dying and living look a lot alike. But in the man-made world of policy and healthcare structure, there are some important forks in the road. So one of them to go on to hospice is you no longer have access to or don't want curative intended care and things that go with it.

And also someone somewhere has to certify that should nature run its course, you likely have six months or less to live. So those are the two forks in the road to qualify for hospice. Neither of those applies for palliative care. So that's a really important distinction. One other point to make there is while palliative care is the larger umbrella, hospice is the older one. So we started in this country with hospice. And since 1982, when Medicare got in the business, we had those restrictions.

And then people in the 80s and 90s realized, like, why are we waiting to the final weeks and months of life to deliver this kind of loving care? And so the pad of care was born as a younger, bigger sibling to get outside of those restrictions. So it's a wonky history. Well, what's interesting is you just said that hospice care was the original. It was six months of life expectancy. And today we're at a point where median or mean is three weeks in hospice.

Well, if that's true, and we think about what we know about what an individual looks like when they have three weeks left of life.

This is usually a person who's already in delirium, already in the early stages of organ failure. This is a person who probably is already spending more than 50% of their time sleeping. And what I guess I'm hearing you say, or maybe I'm imputing, is should they have moved into hospice sooner? Have they been unnecessarily discomforted by pursuing therapeutic intent until that three-week mark on average?

In broad strokes, in general, the answer is yes. I think we know that patients and families wait too long. They're suffering more than they need to and taking on treatments that are no longer helping them for a longer period of time. That there's a, what can feel like a charade portion of care.

And there's a lot of reasons, like patients and families not wanting to look at that piece of the puzzle yet. Denial is a thing, you know. And also referring physicians perhaps is the bigger reason that they are not seeing the writing on the wall or don't want to or whatever else. So it's very often that the physicians don't bring up hospice.

until way late in the game. So for many reasons, I think it is a generally true statement that we wait too long to invoke hospice. We wait too long based on our own stated goals of feeling peace and having some comfort towards the end and not wasting our time doing things that don't help us. And we also get into these situations where my wife tells a story about one of her very close friends who died

In 2018, she had an abdominal cancer and her wish was to die at home. She was readmitted, I think, for a bowel obstruction and she was never able to get out of the hospital. So she died in the hospital and...

This is also probably not an uncommon situation where I think back to patients I took care of who heroic measures were done. So maybe someone had an aortic dissection or a ruptured abdominal aortic aneurysm. They're old. They already have organ failure. You go ahead and do it. But this is a person who was cognitively completely intact when they came in. Three weeks later, they're intubated. They're on dialysis. You can't transfer that person to hospice.

Because you can't have the ventilator, you can't have the dialysis. The moment you turn those things off, the person expires. So they're going to expire in an ICU. Never what they wanted, probably. But how often, in your experience, are people in that no man's land where they now have missed the window to go into hospice? All I can say is not uncommonly. I don't have numbers to cite, but that is not an uncommon story.

And that's why the second I hear someone say, I never want to die in a hospital, my ears go up as a potential referrer. Like, we should really look to get this person to hospice as soon as possible. BJ, I've never met anybody who wants to die in a hospital. I'm going to go on record right now and say, I don't want to die in a hospital. Now, I hope that my death is...

35 years away, 40 years away, if I'm lucky, I don't want to die in a hospital. I've watched too many people die in a hospital. It's never, ever, ever what you imagine it should be or could be. The goddamn beeping, the smells, the noise, the chaos, it is awful. Yeah. So if you were my patient, you were our patient, it'd be interesting to

to go down that road a little bit and Bridget, you may have different things to say, but hearing that and the stridency with which you say it versus like, "Eh, I don't want to be in a hospital. Hospitals suck." But to hear that kind of level of

Passion? Which comes from having been there enough, right? Exactly. Most people might not be as adamant about it as I am, but they haven't watched a thousand of these deaths. All the more reason for me to really take what you're saying very seriously. You know whereof you speaketh here. So if I were in any way involved in your care, I would just pull up a chair and say, Peter, I heard you say that, buddy. And-

First of all, I might ask you like, is that a throwaway comment? Do you mean that today? Really get behind with what you're saying there and to see how durable a choice that is. And then I might say to you very explicitly, like even in the abstract, Peter,

Someday, as you know, there's going to be something that's going to come along and is going to eventuate your death. So you and I are going to keep a real hawk's eye on this together. And there's going to be crossroads along the way around treatment decisions. And what your oncologist or cardiologist or whatever doctor may not share with you is what it means to take on this treatment and what might happen to you.

Together, you and I will interrogate all these decisions and really dig in to see what might land you unexpectedly in a hospital in ways that you're going to feel stuck.

And I would also say to you, Peter, part of dying well is also letting go of all the things you can't control. And there's only going to be so many things that we can dictate. That's right. I could get into a car accident tomorrow that ends me up in an ICU where they struggle valiantly to save me, but I still die. That means I'm dying in a hospital. Yeah. So I would sort of disabuse you of some absolutism around this.

But you have just given us our marching orders as the thing to look out for you as Peter Atiyah to not suffer more than you need to. Where you are when death comes is a huge point for you. So that's noted. So we'll wrap that into our care together as we move through time and we'll make decisions with that in mind.

But that is because you were explicit about it. And you say most people, who wants to die in a hospital? That's true. But that conversation rarely actually happens to get that goal stated and into the kind of care plan. Let's give a couple of examples of where that discussion has relevance.

So now let's go back to a couple of these examples. So you've had that discussion when a person is still in palliative care before transitioning to hospice. Are you sometimes waiting to have that discussion in hospice for the first time? About where? Yeah, where? I think it depends. I mean, I think it depends on the kind of clarity or adamance a person comes into. So it might be one of the first conversations you have. If somebody's had

a really visceral experience in their own life, it could be the first thing they're thinking of with the diagnosis of advanced cancer or something. And it may be a conversation that's happening weeks into hospice, depending on how things have evolved with the family and or how they're changing. I do want to just step back, which is I have seen very beautiful hospital deaths. I think the reason I'm so jaded is

where I came from, you're running codes on people who are dying. They're dying while you're doing chest compressions on them and you're shocking them and you're breaking ribs. So yes, I should really clarify, I'm coming at it from a very narrow point of view that has maybe, maybe skewed my view too much. And that's worth a conversation. We're all informed by those experiences. I'm not a physician, so I haven't had this experience, but I think coding someone while they're dying is a

incredibly painful experience for the team providing that care potentially. But I have seen beautiful hospital deaths and I have seen people very clear in their sense that not dying at home is the goal. That to die in their living room with their kids watching is intolerable to them. To know that they're leaving their family with that imprint because it is an experience that we've plucked out of our living rooms and most people don't have a familiarity or comfort with it.

plenty of people, maybe especially younger people who are dying, are very clear, like, no, no, I'm not going to do that at home. And if that means I'm in an acute care setting, like, okay, that's fine with me and preferred.

And by the way, from an insurance perspective, because that must factor into this, is there a fundamental difference in what an insurer, either CMS or otherwise, will provide based on those options? Yeah, I mean, it's a great question. I kind of go back to your initial laying out of the three trajectories into hospice and

I think we should be really clear. The lion's share of hospice is what they call and reimburse for as, quote, residential hospice, which means in a place someone's living. Their home, their assisted living. In a car sometimes. Right. Really where...

people are. It also could include hospice facilities, like the hospice residences. Which are uncommon in this country. Very uncommon. Very rare. Yeah. So 80% of hospice happens where people live. Okay. And the remaining 20 is either in a hospital hospice unit or a dedicated hospice facility. Or nursing home. Or nursing home. Why is that rare? I would have assumed that the most

economical and desirable place to provide hospice care would be in a dedicated facility. It's the assumption. So

I've had hundreds of conversations being the social worker to go in and describe hospice and give hospice education. And what the assumption is, is hospice is a place that you go to die. And overwhelmingly, that is not true. Hospice is a service that comes to you where you are. I mean, there's a lot of people that feel like you're suggesting hospice, you're going to send me away to die. And that is a

a barrier because people don't want to be sent away. But then there's also disappointment of, oh, there aren't like a plethora of choices of places for me to go. We actually have to like figure out how to hunker down and make this happen at home. And what does that mean in terms of resources? What is provided? So if an elderly couple

who live alone. One of them becomes terminally ill, elects hospice. Let's just assume that if it's the husband who is sick, that the wife is not physically going to be able to do much. She was able to care for him before he had one critical last event, because these things work typically as a step. He's sick, but then he falls. And that's the straw that breaks the camel's back.

Does the home provision cover full-time support? No, nothing even remotely close. So how would she care for him if he is now bedridden, requiring pain medication, requiring medication for sedation?

and any other form of comfort care. How would she clean him? Yeah, you're pointing to, I think, one of the biggest systemic issues we have in this space, which is little to no reimbursement for caregiving. So what does home hospice mean then if you're not giving that? It means an expert team that's available 24 hours a day and comes to you basically as needed. That could be once a week. That could be once a day.

Certainly, I think the goal is often like a couple of times a week. This is part of why hospice is underutilized is because it doesn't always have the resources that people need to manage care at home. And the reality is, is that when somebody goes home, it's usually a communal effort.

Folks are coming in and out when they're not working. They're taking off time working. They're pulling in friends if there's the resources. They're hiring caregivers, which is quite expensive thing to do. It's a huge lift on caregivers, care partners and families to have someone die at home. I didn't realize that. So you're saying that if a person elects home hospice care and they need full time support, they're paying for that out of their own pocket.

Yes. Yes. That can't be cheap. No. No. I mean, there's multiple ways to hire caregivers in the Bay Area. For example, the range, the hourly range would be something like 20 to $55 an hour, kind of depending on if you're hiring privately in your community or agency. No, that's just like a home health aid. Yep. Yep.

God, there's so much to say in this stuff here, Peter. I mean, as you're talking, you're reminding me about this home point, just to make this case. A lot of us in the abstract would say, I want to be at home when I die. But then when it comes down to it, when weeks turn into months and the family is burning out because it's at least 23 hours of the day is family and friends doing the work. So a lot of us say, I want to be at home. But when it comes down to it,

that is not always necessarily the easiest place. Or possible. Or even possible for all these reasons. So to your question about why are there not more hospice houses? If they are not willing to pay to have someone come to your own house, they're certainly not going to pay for you to have a facility. Exactly.

The medical system separates social services from medical services. So the room and board of a facility, the infrastructure of the house, those will not be considered medical issues, so therefore are exempted from coverage. So I worked at one of the very few hospice houses in the country, and it had to close. As famous as it was, the world over, this sweet little six-bed hospice was known all over the world. And it couldn't make it because there was no financial or

It's complicated. There should be more of these places. And to note around your very reasoned incredulity there, because it's much less expensive when the alternative is to go back to an acute care hospital. But as you know, this is not a rational system per se. You know, it's why you see of that couple that you mentioned where he's dying and she's home and she can't bathe.

Bathe him. She can't deal with his bedpan. It's why you see in those stories people go into the hospital, go to subacute rehab, max the Medicare days, go home, go back into the hospital, because there is this sort of not always explicitly called out or intended sort of like, how do we maximize the benefits that are here? It's one of those examples. And unfortunately, medicine is full of these, especially in the United States.

I have a lot of great things to say about the healthcare system here. Probably know where I'd rather live with respect to healthcare, but there are so many examples just like this, where both the payer... So actually I would say all three, the payer experience, the provider experience, and the patient experience would all be better with a different system. Totally. It's more expensive. It's worse for the patient. It's worse for the care team to

to have the patient do what they have to do now to game the system. It's a real shame that even if you didn't care about the quality of an individual's life, if you just acted economically. Just the bean count, if you're just following the beans, that's part of the joy and craziness of working in this part of the healthcare system. You get a line of sight, as you say, there could be this alignment where it's better care for everybody involved and costs less money.

The whole palliative care and hospice world has done a really good job over the last 40 years of gathering data. We saved the health system lots of money. We improved care. This stuff works, but it's still not routinized into the system for all sorts of reasons. The six-month prognosis component of the hospice benefit was really an arbitrary choice in some ways that was about getting it funded.

The sort of original thinkers were like, yeah, this should be a year. And that's probably more right. You should be eligible if your prognosis. But the fact that it's three weeks on average tells you how many resources are being drawn out of the highest price provider. Yes. If we're thinking about the last weeks and months and the swirl that's happening because

You're getting sicker. All of these things are changing in your life. So much is changing. Your touch with the healthcare system is really high.

That in that time to also get really sober, maybe for the first time about what's important to you, where do you want to be? Can you see this thing clearly? Like it's almost an impossible time to do that. Let's focus on that for a second, because this strikes me as a cultural issue. You two live in this world. I would say I'm adjacent to the world, but I don't live in it.

And most people aren't even adjacent to it. So death is a really foreign thing. The reason I suspect that this can gets kicked down the road so much, so much in fact, that after all the can kicking, people get to the end of their life. There's no road and there's just a pile of cans. So what is it culturally that prevents us from talking about this when we're 50?

When we're 60, when we're 70. When we're 30. Yeah. Like, why is it? Because it's become such a, I don't know if I want to say it's a black box. I don't want to say it's a mystery, but it's just something that we don't want to talk about. And as such, I really believe that that's why we get to that three week. Okay, fine. We're pulling the plug. It's three weeks and you fall off a cliff kind of thing. Do we know anything about other cultures?

How is it in Japan? How is it in Europe? How is it in other parts of the world? Do we know anything about how end of life functions there? A little bit. Culturally, there's a lot to study. It'd be so fun to take a couple years and really study the anthropology around dying and how cultures do this differently. We've been dying a long time. Sorry.

It's our greatest skill. Yeah. I mean, you're really good at it. You will not fail at it. It's the only thing you will not fail at. Promise you. And I think what you're calling attention to, there's the culture. So Scandinavian cultures, Japan, a place that venerates its elders. And aging and dying are different, but they bump into each other a lot. So my armchair read on, say, life in Japan, where the comfort of being in old skin might be a different experience. But

But you're still left with this sort of natural phenomenon, cultural phenomenon of aging bumping into this healthcare system idea. And that is the cognitive dissonance. We have these systems that are engineered and wired in such a way that are so at odds with Mother Nature on some level and so blind to cultural issues in the name of science in so many sort of reductive ways. Still, if you were in Japan, I think you'd still find a healthcare system that struggles with this question.

even as the culture maybe doesn't as much. Similar probably in Scandinavia. But I think in those places, in the Scandinavian model, one of the things that comes up for people then of life is other living issues like housing, like your relationships, they're still there. So one of the things that makes dying harder in this country is

The social determinants of health in society are not cared for. So you still have your housing issues when you're trying to die. You still got bill paying things that are, you know, that's the stuff that makes dying extraordinarily hard in some cases or in many cases. So you're saying the wider net of the social safety net here compared to a country like Canada or Scandinavia or Japan, presumably, just adds one more stressor to an already stressful situation. Yeah.

Largely. And in any one sense doesn't do it justice. Because as you said, the healthcare systems, these places, they can also do amazing work. And so I don't want to just blindly categorically denigrate a healthcare system in any country. There's some good things happen, but it's such a mixed bag. And as many problems as it solves, it creates some other ones, especially around issues that people struggle to look at. To your point, still holds

We do have a problem and why Bridget and I came this far besides to see your smiling face, but to talk about this in such a way that

allows an audience as large as yours to begin to think about this before it's too late. This is, I think, all of our work as citizens to begin to rope this part of reality into our views so that we can prepare ourselves for it and we can live with these realities and not be so surprised by the fact that we die someday. In part is so that we learn how to advocate for ourselves versus, yeah, I'd love to see our health system mature around these issues and we'll continue to work on that or towards that.

But I think the bigger note for your audience is what can each of us do to prepare ourselves in ways that the health system is not? To die well in this country, at some point you kind of have to say no thanks to medicine. One thing your audience needs to appreciate and why advanced directives are so helpful, for example, is the default modes of our healthcare system would be just do more stuff. Prop your body up, anything to give you a pulse, unless you've written or stated otherwise,

We're going to just try to protect you having a pulse. Most of us don't equate having a pulse with actually really being alive. And that becomes a problem at some point. We in this carnival where we can really prop up a body almost indefinitely, you have to find a way to say no to that and unwind what that hospital can do. You have to get out of the way of that to die peacefully in this country.

Does that make some sense? PJ, it makes so much sense. And as you're saying it, I'm just reflecting on the internal struggle that I think most nurses and doctors experience.

We don't talk about it much, but I remember during residency the pride that I took in how heroic we could be, what we could do for a patient in the ICU, how many central lines I could put in you, and how I could look at all the different cultures and figure out the five antibiotics you need, and how good I was.

managing your dialysis and getting that CVVHD to manage the pressure and this and that and how I could alter the aortic intra-aortic balloon pump to just keep your heart like there was such a sense of awesomeness in like this technology it is awesome but then you take a step back and you're thinking what am I doing what am I doing this is a physiologic experiment it's not a life anymore yeah yeah and

And you would say, well, is there a chance that this person's going to recover? Well, of course, there's always a chance, but how big does that chance need to be for the expected outcome to justify what you're doing? And there's two ways to answer this question. The first is economically. That's an easier way to answer it because expected outcomes are probabilities. It's what is the expected outcome of this survival multiplied by the cost of this intervention? You take the dot product of those, you add them all up, there's the cost of your healthcare system with respect to end-of-life care.

Let's put that aside. There's the human one. There's the how many people are spending their last weeks or months in an ICU where they are, for all intents and purposes, no longer there. The amount of sedation you have to put on a person to keep them in that state is extreme. They're now swelling into a Michelin man.

And is this what we want their family's final memories to be of them? As you're talking, I just like feel I have such visceral memories of sitting in those family meetings in the ICU where the person in the bed is unrecognizable and unrecognizable.

the expectation that physicians and nurses and social workers and spiritual, you know, the healthcare teams should be able to have all of that expertise, knowledge, not all of it, just some of the expertise, knowledge that you just outlined. And then also the very nuanced interpersonal capacity to, with a relative stranger, ask some of the biggest philosophical questions in a moment of crisis. I mean, that is like,

In some ways, beyond human expectation of physicians, and many do it with profound grace and beauty, even when it really doesn't feel like it to them.

But that's where the consumer side or the patient side is like, come in, having wrestled with it, not because you were given a diagnosis of a serious illness, but because we all do die. And that gets back to your original question, like, this is hard because it's

kind of impossible to imagine not existing anymore, to actually psychologically, spiritually, philosophically grapple with, I'm here and I won't be. And my children are here and they won't be. And my spouse is here and they won't be. And maybe I can kind of wrap my head around that being true for my grandparents, maybe. And then, you know, this is a fundamental contemplation of being human. And I

It's a good muscle. It's a life-giving muscle, I think, to start to flex when you are healthy, when you feel good, when you're like, it is actually true that I don't know when I'm going to die. It could be because I'm hit by a bus. It could be from some unexpected instantaneous physiologic thing, or it could be some process when I'm 85. Like, we don't know. And collectively, we have a hard time knowing.

talking about and being in spaces together when fundamentally we don't know.

So let me ask you a question. Let's assume we put you in a role. You're an advisor that walks through the oncology ward, outpatient oncology. So they bring you in for a consultation with, and maybe you tell me, this is actually not a bad idea, but they just say, look, we're going to bring you into the outpatient onc ward on Tuesdays, and we just want you to meet the patients. Now, these are patients that are in all stages of oncology. So let's assume that this is a breast cancer clinic.

And that means you are dealing with women who have just been diagnosed with pre-cancer, ductal carcinoma in situ, DCIS, all the way up to women who have progressed through every intervention and are now facing completely unresponsive stage four cancer. You are introduced to Jodi Smith. She's 42 years old. She's a mother of two. And she was recently diagnosed with what is turning out to be a stage three breast cancer.

So she has a mass in her breast that they have removed. And at surgery, they also found lymph nodes under her arm. But the workup of the rest of her body found no evidence of cancer. So she is now going to undergo chemotherapy plus or minus radiation. And by the way, I'm not entirely familiar with the odds on this, but let's just say it's a 50% chance cure rate.

There's a 50% chance that this is never going to come back. There's a 50% chance it will come back. And by the way, if it comes back, she will die from this. It will go on for years, but it will come back in a distant organ. What would you say to her when you introduce yourself? And let's just assume she understands why you're there and what you do. So if she says to you, do I really need to meet you? Shouldn't I be meeting my cancer doc? What would you say? I mean, the do you need to meet me question is interesting.

What I would want to know is what has this experience meant to her so far? Let's say she says, this has been the most jarring, terrifying thing I have gone through in my life.

I'm 42. I have a seven-year-old and a five-year-old that are my world. It has never crossed my mind that I wouldn't be a grandmother. And I'm now being told there's a 50% chance I won't be a grandmother. But I'm a fighter and I have faith that these are amazing doctors. And it's a coin flip. I'm going to get heads. Yeah. Yeah. I mean, I would join her in that. I think I would...

want to normalize the fact that she has never imagined anything other than being a grandmother. I mean, I think so much about those initial encounters or meeting of somebody is about rapport building, right? You have to get into a back and forth so that they feel you as another person there that's curious about their experience. And you were quick to kind of add context for me, but actually the process of someone feeling comfortable to say, I've

I've always imagined being a grandma and I'm going to be a grandma. That's probably three discussions. Sure. Well, it's at least there's at least I probably maybe know her kids names or she's told me something like she's asking. I'm skipping ahead. Yeah. It's OK skipping ahead, but it's also skips over into like the relational component that

People, I think, are sometimes caught off guard by and also really welcome because they have been having this experience and nobody's had the time to say, how are you? What does this mean to you? Oh, you're waking up at night. What are you thinking about when you wake up at night? What is the biggest worry that this brings up for you? Has it crystallized something into greater clarity? I mean, it seems to me that, first of all, based on the definition of palliative care,

she would be a great candidate for palliative care because she is still 100% full-core press treatment.

But palliative care would bring in... She doesn't seem to me that she needs someone to manage her pain. She probably needs someone to talk to, talk about what she thinks about when she wakes up at four in the morning scared to death. Yeah, right. I mean, she may not need somebody to help with her pain, but she may need somebody to learn about other impacts of the treatment, how that's affecting her life, and is there anything to do to mediate that. So maybe her interest in sex or her sexual function has changed and...

Nobody's asked her about that. Nobody's thought with her about like, what can you do to adjust and adapt to still have access to that part of your life, even though you have stage three breast cancer or with stage three breast cancer? How many of the theoretical patients that I just described, of which there are tens of thousands in this country, if not hundreds of thousands, how

How many of those patients are in palliative care right now? In very few. Fraction. Yeah. Why? A couple of reasons come to mind. One is that people conflate hospice and palliative care. And so...

People say, I'm not ready for palliative care. They're saying, I'm not ready to think about dying yet. The idea is once I'm in palliative care, we're not fighting. We're not treating, which is untrue. Not true. Untrue. And once you get into the room and you say what palliative care is and people meet you and they feel you, they're like, who wouldn't want this? I'm wondering if I should be in palliative care right now, by the way. I mean, the reality is palliative care is just good health care. Yeah, yeah.

It is just a whole person. It is a rebranding, but yes. Yes, it really does. I mean, oftentimes we're doing this very basic things, what feel very elemental, like sitting down and saying, hi, Peter, I'm BJ. Introducing yourself as some of the magic about of care. I mean, that's a little extreme, but that's true.

Often what Bridget is doing or people, our colleagues are doing is just some very elemental work that gets skipped over at everyone's expense. So that's true. But I also don't want to land there. The work of palliative care, while often is very rhetorical, not just the prescription pad for the MD, we don't value the psychological elements as much, the relational elements, existential elements. So I don't want to say the work of palliative care is easy.

It does tend to the fundamentals of care in ways that the rest of healthcare doesn't, but it doesn't stop there. There is a real skill set that Bridget has for meeting you, timing her questions, how she hears you, when she calls this conversation and saves it for the next time, when she decides to bring up the potentials for suffering.

when she introduces mortality. Those are all, that's a real felt experiential thing that doesn't just happen haphazardly. So I guess I'm saying two things. There's a real skill set to this work that often gets short-sighted, which is another reason why palliative care doesn't get invoked very often is you'll hear physicians, especially in other people health systems, oh, I don't need palliative care. I do that. Or they're not ready. They're not ready or I'll do that because they're saying like, I care about my patient. I treat their pain.

That may be true to a point, but very often why people don't get palliative care, back to your important question there, is one, a misunderstanding of what palliative care is. Two, an underestimating the work that goes into this relational stuff. And so therefore, a lot of people pretend or think they're delivering palliative care when they're not. And third would be capacity. We don't have enough of people who are trained to do this work. The workforce is not big enough. So those are big three reasons why people don't get into palliative care.

So let's say you get to know her better. Let's just say she says, you know, I really love being able to talk with you about this stuff because I'm scared. And by the way, this treatment's hard. My hair is falling out. I'm sick. I don't have the energy to like play with my kids right now. Like there's a lot of stuff in life that is really difficult, even as I am hopefully going through this journey to come out on the other side healed.

How often would she get to interact with the palliative care team? Is this an insurance-based question again? A health system. It's a health system staffing question and also question about in any given system, sort of what are the named priorities of palliative care in that system, which can be quite different. So there isn't a great way to answer that question. I think

It depends on staffing. It depends on if she has other supports, if there's a way to connect her to other supports. And I think this is where our work at Metal Health, I think, folds in because the health system is not staffed or primed or any other number of adjectives.

to support people in the ongoing way that most would benefit from. That's really a community-based resource issue or intervention. It's like where people are actually living their lives with this illness is where that support is going to come from.

And, you know, I think most people find that in their lives from their spiritual community or church community or friend group. Most would benefit from having somebody outside of their lives. Sharing your fears with me is very different than sharing your fears with your friend who's having their own very personal like, you can't die. How would I live without you? You're supposed to be a grandma with me. Like, don't talk about that.

They're bringing all of their own myriad protections and guards from this subject into their caring for that person. I think so often when we meet people in this counseling space, we might be the first person who hasn't, with all of the love and all of the good intent, minimized that.

what the person is sharing because it's hard to tolerate our people's fears. We want them to feel better. We want that to stop for them. And so we say things like, oh, but you're going to be fine. Like, look how well you've done so far. It's going to be okay.

So how would your interaction change if I put you into a neurology clinic and you were meeting people who were all newly diagnosed with Alzheimer's disease? So now we have people who...

show up with cognitive impairment, but they're still good. They're actually still okay. But they've now had that amyloid PET scan that demonstrates the buildup of amyloid in their brain. And certainly to the eye of a skilled neurologist, the diagnosis is unambiguously clear. It's a clinical diagnosis, of course. They've now been given the diagnosis. You are in the early stages of Alzheimer's disease. We don't know the speed at which this is going to progress.

But we know that it's more or less monotonically going to get worse. What are you asking that person? I mean, this is a very beloved space of mine that I've gotten to spend more time in in the last few years. And I think for a lot of people, one of my first questions is,

What have the doctors told you? What do you understand? Because a person may have had many visits with their neurologist, and the neurologist has given very clear information. Let's say that this person, for the sake of this case study, watched their parent die of Alzheimer's disease. And there's a strong hereditary component here. And they now understand. Let's just say they've been in denial for the last year while they were

Noticing some changes.

So let's assume that there's not a lot of ambiguity in their mind about what's happening. What's going to happen. Yeah. I mean, I'd want to know more about their experience with their parent. I'd want to know the things that they're most worried about. I'm going to just say I am most worried that I'm not going to be able to care for myself, that the people I care about are going to need to take care of me and it's going to inconvenience them.

And I'm not ready to lose my mind like I'm young. Let's say this person is 68 years old. This is on the verge of being early onset. And they're realizing that in another couple of years, they might not be sentient.

This is a high functioning individual. This is a person who is still working, who is contributing, who loves their life. And they're basically mourning the loss of that. Yeah. I would not interrupt their mourning, of course, to their feelings. And it's sometimes that's hard for me to like pluck questions that I would ask out because it is such a like in the moment thing. Yeah.

Tell me more about how much you don't want this to happen. Why? What's the worst case? What happens between now and there? There's a certain amount of creating and allowing for space for people to say the things that they're catastrophizing in their minds that they're so scared of that they don't want to have happen to lay that land in order to come back to the

in a trajectory of, yes, you've laid out like a path, but also so much uncertainty actually for like how the progression will happen and when and what the changes will be. Just how hard it is to not know what that will actually really look like. What are the considerations that

Because again, they're just in palliative care. They're going to go and try all sorts of therapies. Deep down, they know that the therapies in this space are far less efficacious than the woman you met earlier with breast cancer, where she's really got a shot. The most these therapies are going to do is slow things down. But look, if you slow them down enough, maybe something experimental comes along. So they're going down the path of, I'm going to do this palliative care thing because you seem like a nice person and I like talking with you. I'm going to do everything I can to slow this down.

So now let's fast forward a year or two. Things are getting worse. What are the things you want to understand before you're so far gone? Walk me through the things you need to do to help them and their family prepare for what is effectively inevitable. I mean, BJ, jump in if there's things.

bouncing around for you. Well, maybe I could say real quick to kind of just double click, as they say, on what you are saying. I mean, the early work, whether it's a cancer patient or someone dealing with Alzheimer's, the early work is so much of relational getting to know the person.

Laying out a safe place for them to fall apart, share their fears without being shushed, all that stuff. So Bridget's saying that's really key. And that might take all of the first visit. You may ask no questions about the diagnosis. It might take five visits before you get to anything specific.

for the reason you're supposedly there. All that is to getting to know a person because we know there's some magic in a person being seen, bearing witness. Them getting to express themselves is its own therapeutic value. But then as the provider, you are learning about what makes this person tick, what inspires them, what turns them off, where their fears lie, et cetera. So you're gathering all this knowledge that that'll help you as you go down the road with them over time

to be able to spot, to look around the bend a little bit for this person and see what might be coming up for them. And then you can sidle up to them and say, hey, remember last time we talked about this or that thing? Or remember you told me how much this or that thing is

a source of fear. I just want you to know I'm going to be here with you. It just lends a much more specific ability for you to accommodate and accompany this person. That's so much of the work is really, it's an accompaniment and looking around the corner with someone. Before we move off that into other things, I just want that to get really clear what Bridget's points are. Not casual kind of, you're not just stalling for time. That is the early latticework. That's the foundation. That's the foundation. Then the person gets to feel seen, heard, and held.

And then when that trust is in place, a lot of other things become possible. So just to back up. It's not inherent that because somebody saw their parent die of Alzheimer's and they've been diagnosed with Alzheimer's and it's the worst thing that they could imagine.

It's not inherently true that it ends up being the worst thing that they could imagine. We don't tend to, I'm going to speak in a massive generalization, but we don't tend to anticipate our ability to adapt very well, especially when like the worst case thing is happening.

Sometimes having been intimately involved in this worst case thing, you surprise yourself or your kids surprise, you know, there's these things that unfold that you wouldn't have guessed would be a part of the experience. And I think I really try to hold space for that to stay curious about like, okay, you're very sure that this experience is going to look like this. And together, we'll see what it actually looks like and feels like. In this instance, let's

Let's say that this person was also married or partnered. I'm just so acutely aware of that spousal or care partner experience. Sorry to interrupt you, but are they also a patient? Or is there a patient confidentiality thing where you can't really be there to support them because your patient is the spouse? Sure.

foundational documents about a care. The unit of care is the patient and family. Oh, okay. So this is a very unique...

part of medicine then? Yes, in a number of ways. And that's one of them. We still bump into the Western autonomy individualistic, like the patient is the patient. We are not documenting in the chart about their spouse, or if we are, we're doing it very carefully. But we're really thinking about the unit. But you have more latitude because you can think of

The entire unit of support that that patient would define as theirs. And in the experience of Alzheimer's, the person whose body that's happening in, if we don't start to get better at this in a major way, her often experience is central to their well-being.

How far into this relationship are you broaching medical decision making, power of attorney, things like that? I mean, are those difficult discussions in that they require sort of a cognitive acceptance? Like I'm actually now putting medical decision making into someone's hands who are not my own because in the future I'm going to lose the capacity to make those decisions. I mean, how difficult a discussion is that?

I think it really depends on the person. Have they really, truly managed all of those decisions by themselves or they're used to some back and forth or they have a different model that's quite intertwined? So for some people, that's really hard to imagine. I think in my experience in the neurologic illness space, so often if a patient has someone, which not all do, that person's coming to visits regularly.

Because they've been showing signs where they're not remembering or they couldn't get to the doctor's office on their own or get the Zoom up by themselves, etc. So they're often presenting with somebody else and there's immediately another person to engage with their experience. The number of times...

spouses, adult children are immediately brought to tears with the question, how has this been for you? Because no one has asked them, not because they didn't want to, but usually because they don't have time. Right. The neurologist is mostly there to think about the patient. Yeah. Yes. And this gets complicated. All these things are such tips of icebergs. I mean, that unit of care thing, even in palliative care, and one of the reasons why we started MEDDLE outside of healthcare is to make good on that promise.

Yes, the UnivCare is patient and family, but when I was working in the medical system, in the cancer center or anywhere in the medical, there's no way to bill for the spouse.

So we'd sneak that family into the side door sometimes to have an appointment with them, or we would dovetail it in the appointment with the patient. So yes, there is space, at least intellectual and emotional space preserved for the family members, but very often it's still short shrift because of the billing issues. So there's a lot to say about that. And that's another reason why metal, I mean, probably 60% of our clients are the family members because there's just no place, no one's asking about their experience to Bridget's point.

What are some questions you're going to ask that patient as their cognition is declining and things that you need clarity on from them, their wishes? What do you want to understand? Well, you brought up advanced directives and advanced care planning. Spend a moment on that. We should all, if you're 18 in this country, you should have an advanced directive.

And my guess is virtually nobody who's young and healthy has one. True. I mean, virtually anyone who's older and isn't healthy has one. Exactly. I mean, you know, we ask these questions in studies and also just casually, if you give a talk, say, how many people have an advanced directive? Maybe 20% of people raise their hand. How many people think an advanced directive is really important? Most people raise their hand. Many of us are not doing the thing we know we're supposed to do. This deferrable thing like life insurance, you know.

Anyway, so one public service announcement here is advanced directive is very important. And you can download a form online. Yes. You don't need a lawyer to do this. No, you do not need a lawyer to do this. And the most important thing to come out of an advanced directive, if you had to pick sort of one of the questions that gets asked, it's probably the proxy. If, God forbid, you all of a sudden in an accident or something happens and we can't ask you, Peter, what kind of care is important to you?

Who do you want speaking on your behalf in such a moment as that? And that's probably the most important question to get clear on. And you know, why would a young, healthy person think about that? So my first advanced directive, I was in my late 20s when I actually finally did it, even though I've been in these conversations for a long time.

And I one day was imagining something unexpected happening, not being able to participate in a conversation lying in a hospital bed. I was imagining my parents who do not speak to each other.

trying to make decisions over their child and my casual, mostly casual partner at the time, kind of sitting there trying to figure out how they belonged in the scene. I was like, I don't want that for them, regardless of what happens to me and my body or what they actually choose. To actually put myself in the position of the people that those choices would default to

I didn't want that for them. If I was at all sentient, I definitely didn't want to hear it. I didn't want them in throes of totally unexpected grief to be trying to negotiate that relationally. It's an awesome responsibility. I'm very honored to say the number of people that have asked me to be the decision maker for them. I can't imagine how many have asked you this. I mean, there are more than a dozen friends who have asked me this.

And I say the same thing to all of them, which is it's an honor to do it, but we have to sit and talk.

You can't hand me that stick and just sign my name on there. Exactly. We're going to have dinner. We're going to have a bottle of wine. We are going to talk this through. I need to know how to do this job. I really need to understand what you want and don't want. Good on you because a lot of people don't do that. And again, the job is not for you to insert. It's not my will. Yeah, exactly. The job is for you to honor the other person's wishes, speak on their behalf. So to do that well, you have to know

the person's wishes. And that's not a couple of questions. That's a big old conversation. And just as you do with the bottle of wine at dinner, like that's what we're doing with patients. You're setting a table that's

comfortable. Often you're sitting, you're asking intimate questions. As providers, you may be sharing intimate details too as part of a relational set, a table for intimate things to happen. So I just want to borrow your table setting there. It's what we do too. It's an important piece of getting to this level of detail. And it's also true, you don't have those conversations once.

Bridget's saying a lot of really important things. I want to double click on another thing. Like the advanced directive, the conceit is problematic right out of the chutes. You're asking someone to put themselves in this future-oriented position where they're in a situation that they can't imagine, where they can't speak. And so what will they want then? It's as best as we have, but it's a problematic tool. And as people move through life with illness or disability, their realization of what they can or might like to live with

We have data around this. You ask a bunch of healthcare providers, if you were brought in your own emerging department quadriplegic from an accident, would you want your colleagues to save your life? Most providers say, hell no, I could never live like that. Go ask most people who live with quadriplegia if they're happy to be alive and say, yeah, I couldn't have imagined this. Same with me. Hey, you're going to lop three limbs off. Are you cool with that? No.

No, but as it goes in this life, we are adaptive. We have capacities that we don't know until something comes along to pull them out of us. So part of this mind bender of an advanced directive is to allow room for a person's sense of themselves and their capacity to change in any direction. So all of that is a preamble to say you have these conversations over time, multiple times, and let the person change over time.

This is one of those places where you want to focus on the things that are important to you, the experiences that are central to good days, to meaningful time, because

Having counseled a lot of people actually in the acute moments of having to make these decisions, being able to reorient them towards, you know, what I've heard you say is that your dad was always in his garden. He wanted to be at home. If he could hear your voice, that's what was important to you, blah, blah, blah. The ventilator doesn't get us there. What are we moving towards is much more motivating than not doing X, Y, and Z, not intubating, not resuscitating, because those things for most people...

exist from scenes from TV shows and are still pretty far away. But it is easier for people to choose the scene that we're going towards that they can square against how they knew their person. There are people who are very clear about A, B, and C interventions being something that they would never want. And I certainly honor that. Maybe I hold it with a little bit of grain of salt, but I honor it. I'm more interested in when I have been asked to be in that role,

To understand what makes this person's life, not because it's going to perfectly translate. If I can't dance under the full moon in Bali, like my life is not enough. And you're like, okay, but what if you could like see the full moon from your bed? We adjust. That's a really important point, Bridget. I've never thought of it that way. I probably have just always had a bias towards, okay, what are the things we don't want to do? What are the things we don't want to do? Right. Think about medical lingo, DNR, DNI, no chest pounding, no intubation, blah, blah, blah, blah, blah.

But I like this framing better of, okay, what are the minimum set of requirements you need to have to still hold some delight in life? And what do we need to get you there? Those are the steps we'll take. There's some language around that, Peter. But there's a movement to change DNR to AND, allow natural death, to get away from the things we're not doing and the things that we are doing, to make that point. Interesting. Has that taken hold yet? I don't know that it's taken hold. There is an effort to...

try. I like that. So your point is really, if we have a sense of what we're moving towards, even if we have to be very flexible and allow our mind to change en route, that's just a much more deliberate path. And it's also very helpful for those around us to know what to do versus just not to do. What are the differences that you have both experienced in dealing with dying cancer patients between those that are quote unquote old and those that are young? I mean, of all the chronic diseases,

Cancer obviously disproportionately strikes the young. People in their 40s and 50s don't really have to worry about heart disease and neurologic disease for the most part, but they're far from clear of cancer. There's actually an article out recently that even suggests that the incidence of cancer is rising in young people. So I'm curious as to what you've learned about living and dying through the lens of cancer in the

tragic cases, I'm just using this term sort of loosely, where everybody agrees the 40, 50-year-old dying of cancer is tragic versus the part of life when someone is in their 80s and 90s and dies of cancer. Well, one thing that leaps to mind in my experience with younger people, I mean, you can get very philosophical and say, what is old? And I've seen some kids die. Which, I mean, that's a whole new level. A whole new level of sorrow and senses of tragedy on some level for the

Parents very often. A very different level of engagement or awareness. Yes. Potentially. But I have, and, right, actually the child, the kid, the young person, I have seen some, we want to be very careful to not be judging and grading deaths. This is why the problem of good death is a really problematic construct. And in terms of something instructive to learn from, I've seen some younger people die so beautifully and adapt so remarkably to the reality that they're living.

It's just stunning. Why do you think that is? I mean, my sense is because, you could say because...

They haven't yet been around on this planet long enough to develop such concrete notions of identity. I am BJ. I am this. I am not that. Expectations. Expectations. When do you think that kicks in, BJ? I think it's a spectrum. Late teens, early 20s? I would say something like that is our sense of as we individuate and our identity sort of set up as something relatively independent compared to our earlier years.

I certainly feel different about myself now than I did when I was 19. But to your point, I think, as we said earlier, dying is a natural thing. We all do it. Hey, what's the problem? But the problem is, A, that it's really hard. If there's a problem around dying, it's the social pressures or the expectations from ourselves or others that make us feel that we're doing it wrong.

or that there's something wrong with me for dying, et cetera. This is where a lot of the problem comes. So a kid may just have a much more fluid sense of themselves in the world. I think that's a big one. They may not have developed, haven't seen enough of the planet to attach so firmly to it, perhaps.

But those are just guesses. There is a theme, and we have a colleague, Chris Adrian, who's a pediatric palliative care doc at MEDDLE. It would be interesting to talk to him. But that's my experience with younger people. Now, it's a very different conversation with their parents. So that's one thing to say. I mean, that gives space just to pause and note how complicated it is because the grief,

The sort of anticipatory grief of a dying person is very different than the anticipatory grief of the people that will go on to live without them. And that's the space that we're trying to negotiate these decisions and make plans to very different developmental tasks overlaid in the experience of children. And of course, this is not universal, but in those experiences of children who are clear like,

I think I'm dying. Nobody's willing to talk to me about that. Looking around for another sober person to engage with them. That's just kind of an amazing thought. Just to pause on that for a moment. I've never really spent much time thinking about it because in pediatric surgery, you saw some children who died, but they were usually on a medical or pediatric service by that point. I don't really understand what the metacognition is of a dying child. So a 10-year-old child who's got cancer, let's pick something like that,

They're aware that something's happening, I suppose. Some certainly are deeply. Yeah. More than often. Sometimes with a more direct shoot to kind of the truthiness of what's happening than adults. The adults around them, including the physicians and clinicians. Yeah. I think there's an arc for our development where we know a lot as kids and we go out in the world and as adults and we take on, we transform.

try on all these other outfits for size and do the things we're supposed to do and shoulds and stuff. And then there's this can-be, this return to a sort of a playfulness and a lightness within old age that would have you thinking that our wisdom was never higher than when we were kids. We just...

Didn't get seduced into thinking that someone else outside of ourselves knew more than we did and started externalizing. We could draw lots of fanciful narratives around that. The fluidity with which my three-year-old and six-year-old will sometimes they'll wake up and be like, do you think Nana died last night?

When are you going to die? There is a curiosity that they have without the attachment actually to like the deep meaning that we may as adults get into anticipating. And then because we're anticipating feeling it, they can kind of just like ask the questions. Will you be alive when I die, mom?

Well, you'd be old. They're just trying to figure it out. They don't get in their own way in the same way. Yeah. Maybe there's a way of putting them into project. Yeah, no, totally. It's not comfortable. I want to go back to something you said a second ago. You brought up anticipation of...

loss and death and then the actual event and the loss once that person is gone and obviously those two states exist for the surviving only one of those states exists for the dying so tell me about the experience for the Person who's going to die. What are the things that they express to you as their greatest fears? How often is it again pain physical pain? How often is it?

not existing? How often is it leaving someone behind and they're suffering? And then similarly, I'm curious as to what the anticipated versus realized experience is of the loved ones.

I mean, I think for many people, there's real fear about the physiologic experience of dying, of pain and other symptoms. And I think one of the beautiful parts of our work is in the nature of people being linked to palliative care, hospice care, there's some ability to comfort that, that we are here, we are watching those symptoms, we're working with you. So could we say that nobody in the year 2025 needs to actually suffer from

during death? I mean, is that too an extremist statement? For example, is there a pain that is so deep that it can't be reached by the most potent narcotic? Is there a shortness of breath that is so significant that it can't be offset and palliated by probably a narcotic as well? Well, just from a sort of medication-y-

Yes, to your question. I think we can say that no one in 2025 needs to die suffering as long as you include the potential for sedation to be part of that. It may take so much narcotic to quell your pain or your shortness of breath that we are actively putting you to sleep. So if you include what's called palliative sedation, then I think that is a true statement.

I think I just want to make a quick note on the use of narcotics in this setting. Like narcotic is a police term. It's a term of law enforcement. And the medicines that are being used in this time are opioids. And it's an important distinguishment because.

Opioids are often one of the central medicines in managing the symptoms related to dying and related to serious illness at a certain point. And people, for good reason in 2025, in the setting of how opioids exist in our culture, are scared. I recently had a podcast with Sean Mackey, who's a pain specialist, and we talked a lot about opioids because, on the one hand, they are a very important part of the toolkit of a pain specialist.

They would be an even more important part of your toolkit. And they have been the most widely abused class of drugs in the history of modern medicine. Those two statements can be simultaneously true. Absolutely. But it doesn't detract from the former. Yes. Right. Yes. There is a fair amount of work. Opioids are being used to manage people's symptoms with serious illness. We need to pause and ask the questions of like,

How do you feel about this medication being prescribed? Do you have experience with it? Because everyone comes with some imprint around the meaning of these medicines. And if we want to help people use the medicines correctly to get to that place where they might be as comfortable as we're able to get them, like we got to peel back the layers on the relationship to the medicines being used. Is that a common phenomenon where people show up with...

belief about this? And is the belief that it's sounds like a silly thing to say, do people think it's cheating? Do people think there's some nobility in suffering through death? Certainly some people do. Some people feel that pain is redemptive, that they don't want their experience blunted or muted, or that they have such a commitment to a quote, natural experience, or they have been a person that never took

pharmaceutical medicines or drugs anyway, that this could be a real diversion from how they've understood or been comfortable in relationship to medicines. And I would say often there's a need for conversation in this space. At this point, unless you're living with no access to media, everybody has some touchpoint reaction and bias about these medicines.

And so maybe it's not a long conversation, but it's a really important conversation. And a lot of people are worried about addiction. People who are sober are wondering how this impacts their sobriety. That's a super interesting thing I'd never thought about. So you take an individual who's been sober for

And they're wondering, wait, can you really give me a benzo? If you give me fentanyl and morphine, is that violating my sobriety? How do you answer that question? I answer that question usually with more questions around their sobriety, what that experience has been like, where they are with it now. Has it been important that there has been absolute abstinence? It exists differently from different people. Questions that sort of there, you might put in the camp of identity. Are they telling you? I mean, I might say that.

From where I sit, Peter, there's no nobility in you suffering unnecessarily or being in pain unnecessarily. You as a sober person allowing me to prescribe you an opiate at this stage of your life, to me personally, as your physician, poses no moral quandary to me at all. But what about you? You're the person who's living in these shoes. And if you tell us absolutely no opiates or absolutely no benzos,

Okay, we will listen to you. That may mean more pain than otherwise, but that's your call. So to Bridget's point, it would be back to more questions and not putting it on the patient. And even saying, and by the way, Bob, you can change your mind anytime. Let's live with this decision today. And if you wake up tomorrow and you want to change your mind, nothing's changed. Exactly. But also, I'm always knowing sort of the social...

around some of these issues, I will go out of my way to say,

You're not going to get addicted to these medicines. We're going to be using them judiciously. A lot of people, when they hear get the morphine, there's a phrase like hang the morphine sometimes is a euphemism for essentially euthanizing a patient. It's not legal to do that anywhere. We're not going to kill you. We're going to use only as much medicine as this helps your symptoms. Okay. So there's a lot of room to clarify how we would use these medicines, what they mean and what they don't mean. So even if someone doesn't ask me those things, I usually find an excuse to say those kinds of things.

I think we have to step back to for a second because we're using suffering. And pain. Yeah, we're using suffering in a little bit of like a, I would say not correct way. Because someone can have all of their symptoms pretty well managed and feel pretty comfortable physiologically and have an extraordinary amount of suffering. So to say in 2025, nobody needs to suffer at the end of life, like,

I think that's impossible. Yeah. For the most part, we can say,

We will do everything we can to help you be as comfortable as possible. Like, can we say we can do that perfectly? No. I mean, I guess outside of the sedation. Well, no, I think you're drawing, one of the things you're saying, Bridget, and I think it's really important is there's a difference between pain and suffering. So help me with that a little bit more. So pain, we understand. I think we understand shortness of breath and things of that nature. Nausea. Yep, exactly. So let's bracket that those can all be managed physiologically and we have done so pharmacologically. Yeah.

Now talk about the residual of suffering. How much of this is sadness? How much of this is grief? Tell me more about what the suffering is once you've addressed those receptor-bound physiologic things. Yeah, I mean, it's one of the reasons why precise, nuanced symptom management is so important because it's when the noise and the volume of the pain often is turned down.

that we get to learn about the stories someone is telling or the things that are replaying in their heads about not getting to see their kids grow up or not getting to finish that piece of work that felt so important to them or the ways in which they wish they hadn't taken something for granted. When symptoms are loud, it is really hard to get into the

the places of suffering that are about incompleteness, they're about what we won't get to do or what we won't get to do with our person or our people. There's a whole pot spiritually, existentially around faith and relationship to God potentially or what that is for you and if that has stayed whole in this experience of illness, right? So there's just so much

Turning the volume down on some of the physical stuff really can open up the space to really

If you're nauseous, you're not going to tell me how you're feeling other than the nausea. It's the only thing going. I mean, in some ways, like a lot of misconceptions around our work, as we've said time and again, one of them is that it's just about symptom management, that we're symptomatologists essentially. And it's really importantly wrong. It's sort of hyper reductive. And as Bridget's saying, in some ways, the first thing to do is turn down the symptoms to the degree possible so that the rest of you is present. That

That's the starting line. It's once we get you comfortable enough so you can think about anything but your pain or your nausea. That's when the real work begins of getting to know you and evincing your fears and your hopes and your dreams. And that's the stuff that's really the meaty stuff that we want to get to the end. So comfort is a starting point in a way.

And just maybe to back up a little bit first, so what do we mean when we say the word suffering? For me, pain is a stimulus. There's safety to it. It tells us to stop doing what we're doing. There's a sensation. It's complicated. The pain pathway is not a simple one. There's not a pain pathway. It always involves emotion, always involves cognitive stuff. It's just a matter of degree. But that degree is, so when we tip into something where your pain or other symptoms are causing a threat to your identity, a threat to your sense of self,

a threat to what you see as real in the world, that's when we get into suffering. So suffering is a mosaic of physical, emotional, spiritual, existential. The whole panoply of the human experience goes into suffering. So someone may have inordinate pain.

But if they believe that that pain is redemptive, it's going to bring them closer to God or is burning off some bad karma, they're not suffering. They might be very uncomfortable. They might be extremely uncomfortable, but they're not suffering. It's not threatening their sense of self in the world. And someone might have a very what looks to be a mild cause of pain, but be suffering extraordinarily because that has undone their sense of being. Yeah.

It's a really different notion. It's not just the sort of physiological signaling cue. Does that make sense? Completely. Yeah. Let's not mix those terms. Yeah. I want to pivot a little bit to talk about

How to pull all of this together, right? You guys have had decades of being at the bedside for experiences that I'm sure you look back upon and think, that was really a wonderful experience. That patient passed out of this world and their family escorted them out in the best way I can imagine. And I'm sure you have seen the opposite. I'm sure you have seen things that made you cry and made you think, I weep for all parties involved.

What are some lessons we can take away from that? What are, I hate to call it do's and don'ts because that's such a stupid, but you know what I mean? What are some of the things that have in the process? We'll come back and we'll talk about insights that you've learned from the dying because that's where I want to end it today. But just from the process of the dying and their loved ones, tell me things you've learned that people should know that increase the probability of it being a

as positive as it can be versus the opposite. Wow, it's a toughie. It's a toughie. As we said, this subject just really thwarts much objectivity or anything that smells reductive. And in some ways, that's the death that we are, as practitioners, are heading for is something that allows for, while we talk about a body or a person in decline,

That's our medical bias towards the physiology and the bodily. It's also very possible that people can be having this incredible emotional and social and spiritual growth, even as their body is in decline. So part of it is our naming and overcoming the biases we're born into in this particular culture, in this particular world. One answer to your question is, it's so hard to answer, but for me...

For me, these days, the word honesty comes up for me a lot. So the bullshit that we tell ourselves, the partial truths that we tell ourselves, the pieces of ourselves that we don't look at, that we don't allow in because we're either ashamed of or whatever it is, or blind spots, or we've

bitten the sort of autonomy, independence thing so much that we don't let any social reflection in. Dying can be, is this sort of great accounting. It all has, it's all coming out in the wash there. So one thing that I see make a difference and head towards the do's and don'ts, if each of us can take into our, perhaps our responsibility, but also our privilege to know ourselves over time and to dare to look and to see and to be true to ourselves, I

My way of thinking, if you asked me this question five years ago, I probably would have said something different, but that's my big takeaway these days is if you want to be ready to die well, get real with yourself. The sooner the better, because one of the things you'll allow in is a richer life.

One of the reasons why we would encourage people to think about death earlier in life is not just to avoid the defaults of a medical system that doesn't think about these things, but you also allow in the idea that both your bigness and your smallness, I'm one of a zillion people who's ever lived, I'm a drop in the ocean, but also allow in that

the ocean would be different without my drop in it. That work of placing yourself in the world and feeling in right size to it all requires a lot of dynamic honesty. And that takes effort. You need to dare to look at yourself. And that to me is sort of a big do. If you do that well, so much of what we talked about today is it's not the problem of dying so much, but the difficulties of uncertainty.

is so much of what we're guarding against or working with. Not so much death, but living with uncertainty. And that's something that we all do all the time. So my answer to all that is get real with yourself and be as honest as you can one moment to the next and allow yourself to move and change with reality. That's a mouthful, but that's as close as I can come to a do. Sorry, does that light up anything for you? That's actually really a profound one because on the one hand, it seems so...

Easy is maybe not the right word. So self-evident. But on the other hand, it's so difficult. And it's something that anybody with a modicum of introspection struggles with. Yeah. And even when you think you got it, oh, now I know who I am. No, as relational beings, whatever's coming tomorrow might yank all sorts of other things out of you that you didn't know were there. So the sense of self, this identity thing is a biggie.

I guess this feels connected, but the word for me when I think about those beautiful experiences or the ones where I walk away just feeling like, not bad. I'd be okay with that.

Yeah.

When there's a lot of connection or connectivity in this time, the circumstances matter. But a lot of different circumstances, a lot of different storylines can actually feel quite enlivening or even nourishing or validating because it is being in touch with what is real. How many patients are permitted that medically? In other words...

Isn't that in part constraint by their symptoms and the medications that are needed to, again, either sedate or control pain? And then we talked earlier about delirium. What fraction of patients that you experience in the final days and weeks of life have the ability to be in that state?

That's a tricky question, but I think many, if the state is any level of connection to what's happening, I'm not talking about moving towards totally conscious death or something. I'm saying even in delirious states, there can be moments where there's just like real connectivity. Maybe we don't understand cognitively totally what's happening, but your kid is sitting there telling you stories about the things that were important.

to them and their experience of you, or there's some sensation in your hand that's receiving input from your spouse or the light. We just don't know what that experience is. So if we work towards environments and a focus on promoting the idea of connection, I guess I just really believe that that translates regardless of mental status or like mental clarity. And I think

You said something earlier, most people, three weeks, there's probably delirium. I don't know that I think that's true. You're the expert, not me. Yeah, I don't think it's most. Days before, you may be. Yes, days, obviously so common. But I think there's opportunity for connection the whole time. Especially if you include to yourself. Yeah.

into other parts yourself, then for sure. And especially if also once you include inanimate objects and non-human things. I mean, I have some of the most connected experience of my life have been with dogs. So once you broaden the scope of what you can connect to, I think Bridget's points are really well placed. You may also allow surprise and to feel connection to a perfect stranger has happened to me. I felt like my life has been saved by strangers many times one way or another. Say more.

I'm just despondent about, especially earlier days in these shoes and just feeling so alone and so in pain or whatever it is, or just tired.

But the kindness of a person walking by, just a little bit of eye contact, a little wink. Hey, I see you. You see me? Maybe they hold the door open, but just a little connectivity and just the realization that it is an illusion to say you're alone. It can feel very real, but none of us is actually alone. So as you head towards the cosmos, you are, there's room. This comes up with psychedelic work. There's room to feel connected to all sorts of things you can't name, but you feel that connection.

How much have either of you followed the psilocybin work, Roland Griffith's work, the end-of-life stuff? And what is your take on, again, notwithstanding the regulatory challenges of that, what is your take on that literature and its efficacy? I think anecdotally, I have seen psychedelic experiences be incredibly helpful to folks that have run into a place in themselves where they

They've just hit a wall in their own imagination and their own mind as to what this experience is or what it can be, that there's just this opening that can happen, sometimes incredibly subtly, that allows for just some slightly different insight not generated by the brain that you know so well or the parts of your brain that know so well. And I think it can be

Amazing. Super helpful. I mean, I'm really, in my own experience and those are people I've worked with,

It's easy to start feeling evangelical, like we should just be putting psilocybin and other psychedelics in the water. And let's be careful. I mean, I think we are going to want to learn from reality as we begin to do more of this work and study, and let's be true to what we learn. But on the whole, these substances, these medicines have been able to achieve in a session with a patient what months or years of talk therapy, other things haven't accomplished. And

It's not necessarily about learning something in those experiences. It can be.

From my time with it, it's more that I get past my thoughts and I get into this embodied felt thing. It's not an epiphany. It's just I feel the power of that epiphany or that idea in my bones, in my flesh. It's a different kind of knowing, which then allows for a super sense of connectivity. You can't be disconnected. That's just, you are connected and you feel that and the therapy of that. Also, you get to see...

how silly our minds can be. And you just learn that very simple bumper sticker truth of don't believe everything you think. You come out of there with a new relationship to how you hold your thoughts. And people get to that by other means, through meditation, through prayer, through deep transcendent communal experiences. It's accessible by way of other avenues. So you've obviously spent a lot of time with people in...

by definition, the final stage of their life. What have you learned? What have you learned that changes the way you live your life or the way you want to live your life? I can say...

Something. Again, huge, beautiful question you asked, Peter. But one is, and maybe this is some relief for your audience, I think many of us would say we'd love to be fearless and love to go into our death unafraid or live a life so conscious that we have no regrets. And my patients have taught me to undo those strangleholds a little bit. It's more the truth that I've learned from folks at the end is change your relationship to fear, your relationship to regret.

The mark of living with no regrets, there may be something for you in that. But I'm not sure how, if you're being really honest with yourself, how possible that is. The lesson has something to do with coming around to accepting everything that's in you, including the gnarly stuff like regret and fear and even suffering. Are there certain regrets that people have shared with you more often than others? The common thread, depending on whether it's I regret working too much, didn't tell my kids I love them, the standard thing.

regret menu, what they all seem to have in common is they regret not letting themselves feel or not letting themselves be true to what they actually felt. Something got in their shame or something else wedged in themselves and separated themselves from themselves.

or separated themselves from other people they love. And the regret has something to do about artificially or accidentally putting a wedge between you and anything. He could spend a lifetime running from fear. I've watched a lot of people come around to

When they finally got the cue that fear was just a natural part of being in a body, they became okay with fear. They took away that secondary shaming of fear. And then fear became this, it was sort of right-sized to them and it was defanged. I've seen that play out a lot. The same with regret. The commonality, back to your question, has something to do with not being quite true to themselves or trying to keep something out of their experience and all the work they did.

And when they come to realize that it's all got to go anyway, welcome even pain to feel anything is wild and magical. Do people need to be really close to the end to typically come to that near inevitable realization? Or is that something people are realizing six months out where they can do something about it, where they still have

all their faculties and they can still mend a bridge or mend a relationship. Yeah, absolutely. That can happen anytime. Back to kids, they're not gumming their own works up. They can do that. So yes, we can do this. We can learn to do this. And so another reason why we would invite this subject into our daily lives. If you look out your window, death and life are happening all the time. You see it on your windshield.

It's all over the place. If you can really be aware, let these messages in, then you can let the lessons in too.

towards reconciliation or why hold a grudge? Why would you ever cause suffering in another person knowingly and yourself included, et cetera? So yeah, Buddhism was sort of founded around this question and to give you a life of practice around meditation, how do you hold your mind so that you don't suffer unnecessarily, so that you can be okay with the fact of your death. There are scholarship bodies of thought and just your own personal experience of living daily life

If you let it in, you can gain these lessons anytime along the way of life. If I think about my own learning, you can't, I don't think, really hang out in this space a lot and not really wrestle with the reality that we don't know when we're going to die, which means that this is my life. I've got two young kids, so regular, I'm kind of like, okay, this is my life, this is my life.

just as like a management strategy. But I think there's also like a tether to the reality that this moment is what I have. It is not, it may start to sound trite, but it is not, tomorrow is not promised to me, 10 years is not promised to me. And if that is true, can I use that as this reminder, this moment, the way that I speak to you,

being tender when I do things out of my value system, right? Staying really connected to now is the invitation that comes next to or has come for me in being so aware of mortality. You do not have to be sick.

You do not have to be facing the end of your life. No one in your life has to be dying right now to just take pause and be like, this is my life, this moment, and then the next. Do I remember that all the time? Absolutely not. But it is a very available moment.

Yeah. I intentionally stay connected to it. I intentionally make it something my kids can be connected to because it's inarguable. We can have three different takes on everything that we've said today, but it is inarguable that we are always living in the reality that we don't know when we're going to die. Yeah. Amen, sister. And I think that gets back to sort of the do's and don'ts. You do have a relationship with mystery, with not knowing.

do have a relationship with the present moment. Those are some pretty good do's. What I'm saying is not light or easy. It doesn't make me not afraid. I feel very aware of how much I want to be alive and how long I hope my life is. And also humbled by the fact that like what I have influence over and control over really inarguably is right now. And I hear you not being ashamed of your fear and that's a difference.

I think a lot of people would be afraid. And then what they're really experiencing is the shame of being fearful. I'm very terrified every time I get on a plane. Yeah. And I think also sort of dovetailing to is this word control comes up a lot. It's a big one.

And I think in terms of if we're going to remotely dispense any advice, the serenity prayer, it comes up a lot one way or another. I think a lot of your listeners will know this, the ability to discern what you can control and focus some efforts there and let go of all the things you can't control. And maybe in the middle, identify that even though there are some huge things we can't control, there is a lot we can influence.

Those are different. And that there's that spectrum between control, influence, and like surrender. And how do we build our flexibility? Well, and how do you learn to sit with? I think that message of the serenity prayer, often I hear people, myself included in the past, some friends take that wisdom of that message and say, okay, I'm just going to focus my attention on what I can control. And then they have a lifetime of focusing their line of sight in one direction and

I think what we let go of is the other half of that message, which is not, oh, don't give a shit about it because you can't control it. Learn, sit with all that you can't control. Practice not being in control. That will serve you very well as you head to your death. What about the role of forgiveness? How often do you encounter the dying are wrestling with needing the forgiveness of someone or needing to forgive someone?

It's a big theme. It's written about a fair amount. The things to kind of focus on. Saying out loud, I love yous, I forgive you, please forgive me. Thank you. Thank you. These are tried and true messages that seem to cut across culture and stand up pretty well. Back to your

specific question about forgiveness. I don't know how often, I guess I would say more commonly, what I see people needing to learn how to do is forgive themselves, picking something in sort of common. I see that a lot. How do you encounter it? Being at odds with themselves. When there's no boogeyman, there's no, they're just not comfortable with themselves. They're at odds with themselves, self-loathing, self-critical. Even in the final weeks of life?

Some. We have a bias. There's a bias. All the people we've seen have had the benefit of hospice and palliative care involved. So they've been loved on. They've been heard. There's an inborn bias to our experiences. I don't know. I don't know if I have like a good answer about the forgiveness piece. I think it comes up. I don't know that I think it comes up a lot. I don't know. Yeah.

Yeah. Again, I think that might be the bias of people that you've spent time with over time. Those things have gotten to, there's no need for a deathbed. I mean, there's not a lot of truisms in this space that I generally vibe with, and I'm pretty allergic to most of them. But I will say that I do think there's something to like people die the way that they live. Those who lived in love die surrounded by love kind of thing.

Yeah, that or if you had a lot of people around you, maybe there's gonna be more people around you. If you're a person that dug into your life and really investigated your mind, and you did that relationally, and you shared your reflections, and like, that's also more likely to happen when you're dying. So

If there's an experience you would like to happen, if you're imagining into the future, you're like, I think dying in this way would be okay or more tolerable or nice or beautiful. Start doing it now. You're worried about forgiveness? Investigate that now. You want to feel more connected? How do you do that? You want to

be in your body more? How do you do that? That's the best way to get there at the end is that you're building those muscles now. I mean, some people do 180s with a big diagnosis or the awareness that they're dying, but mostly we lean on the places that we have hyperdeveloped because they're comforting, because they're familiar in the face of this vast thing.

I mean, that might be the single most important insight of them all, which is we die how we lived and we will, what's the expression? We rise to the level of our training. In sports, we talk about that. At fatigue, you rise to the level of your training. And so we will default to our regular strategies. The strategies that got us through life are probably the strategies that will get us through death.

And so what we should all be doing is imagining the death we want and begin practicing that at life and make that our scaffolding today.

I think it's about as good as advice as I can imagine, especially if you throw in the caveat that along the way, learn to deal with things when they don't go as planned so that you don't have this sense of failure at the end. I mean, one of the saddest things I think we see is people who feel like they're failing and dying. So I don't want to set it up as an accomplishment per se or an achievement per se.

But your advice sounds really good to me. Like we can't control for the outcome with certainty, but we can build the muscles and the capacities that are going to help us land in that place. If you're a person who builds new coping skills or new ways of being in like high stress adversity, like you'll probably do that then.

Just keep going. You said it feels like a throwaway line. When do we begin dying? You don't become a different person when you're dying. You're still going to be Peter. You're going to still be Bridget. I'm still going to be BJ. And that has already begun. That active dying, we never finished answering that question. What goes in that? The final day or two when the body's really shutting down. So active dying has its own frame and we can revisit that any old time.

But everything up to that is some form of living. So you can begin practicing this dying thing today. Well, let's talk about that final thing. What does that last 24 to 48 hours look like?

So the phrase we use is active dying to distinguish it from the rest of living dying thing. And the body is actively shutting down. So system by system, you'll stop, your kidneys will shut down. You're not making as much urine in part because you stopped drinking probably a few days ago because your body couldn't handle the fluids. So thanks to kidney shutting down, you get a buildup of toxic metabolites and you get a little intoxicated, a little dreamy. That may be the

the mechanism of your delirium. So you're not eating, you're not drinking as a general rule, you're probably a little fuzzy or entirely asleep. Breathing, the two biggies, those can happen anywhere along the way, but the ones that tell you you're really close are when you have modeling of the skin, a sort of lacy, bluish experience where your body's just not moving blood effectively and you'll see skin changes, especially at the extremities.

And breathing patterns change. Oftentimes you get apneic, so long periods of no breath at all. You often hear something that's like a frightful phrase, but the death rattle, which often is sort of a gurgling sound with breathing. That's just because your oropharynx is no longer, the reflexes are dying out, so you're no longer moving fluids as they pull in the back of your throat.

which is an important note there. If your reflexes are no longer functioning, you're not likely feeling it. So a death rattle sounds pretty gnarly, but it's generally probably harder for the audience than the person dying. But those are the things that are typically experienced in a body that's actively dying.

And that's only going to last a matter of days. At most, hours to a day or two. I think the other thing that's happening is the experience for the people around that person. And there's so much to say in that space. But I do think having counseled a lot of people, there's a feeling of preciousness.

We don't know when that last breath is going to come. Maybe we really want to be there. Maybe we feel like we can't. But often for someone watching and waiting, it can be really hard to stay connected to our own experience. People won't get up and go to the bathroom because they don't want to miss that moment. They don't eat. Maybe their appetite is low anyways, which, you know, is fine. But it

It is a time to be thinking about really basic needs and basic comforts for everyone in the space because that influences the space and the environment for all. And most people feel like this is the dying person's experience.

All of the focus is there. We're watching every respiration. We're even matching their breathing. We're creating anxiety in our own bodies because of that. And if we can invite attention to everyone's experience and give permission to like, you need to take a walk, go take a walk. It may mean that they die when you're not in the room. And maybe that's okay. Maybe they die in the one minute you're going to the bathroom for the first time in six hours. It may just be that way.

That's a really, really important point. Once you understand delirium and so that you can contextualize what you're hearing from a loved one, that point Bridget is pointing to is such an important one. A lot of loving families keep these vigils and don't sleep, don't do anything so that they can be there for the death thinking that that's the most, that's the highest high. That's what it means to be there when someone dies is in that exact moment when they take their last breath. And so to Bridget's point, this is a lived experience for everyone. So you

I don't think any of us could tell you why this is, but it is just a thing. You talk to anyone who worked in hospice for a while. It seems to be that a lot of people need to be alone for the final moments on the planet to really let go. I can't tell you why, but it is a thing. So you going to the bathroom or taking a walk or stepping out of the room may be exactly the thing that that person needs to finally let go.

So the message is don't leave and therefore the person will never let go. You just potentially can make it harder and harder for that person to actually finally let go. So go to the bathroom, take a walk, kiss the person goodbye, drink some water and know that not only they may be gone when you come back, but that may be exactly what they needed to finally let go. It's a hard one for families to take in, but it's just a thing.

Well, guys, thank you very much for this discussion today. Very important, very difficult discussion. Not one we want to have. I imagine for you guys, that's pretty common. You go to parties, nobody wants to ask you what you guys do. Or they have got a great story that they feel is relevant. Yeah, yeah. But given how much of our time on this planet we spend heading towards the inevitability, the one thing we will all be 100% successful at, it certainly warrants a discussion. Yeah.

Amen, brother. And more. And multiple discussions, as we pointed out. It's slippery. It's huge. It's a windy, inherently messy conversation. So it's not just us struggling to articulate something as much as we are articulating the messy, the inherent complexity of something. Yeah. Well, thank you guys. Thank you. Thank you, Peter.

Thank you for listening to this week's episode of The Drive. Head over to peterottmd.com forward slash show notes if you want to dig deeper into this episode.

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