The Peter Attia Drive - #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.

00:00:00.000 Hey, everyone. Welcome to the Drive podcast. I'm your host, Peter Atiyah. This podcast,

00:00:16.540 my website, and my weekly newsletter all focus on the goal of translating the science of longevity

00:00:21.520 into something accessible for everyone. Our goal is to provide the best content in health and

00:00:26.720 wellness, and we've established a great team of analysts to make this happen. It is extremely

00:00:31.660 important to me to provide all of this content without relying on paid ads. To do this, our work

00:00:36.960 is made entirely possible by our members, and in return, we offer exclusive member-only content

00:00:42.700 and benefits above and beyond what is available for free. If you want to take your knowledge of

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00:00:53.200 of the subscription. If you want to learn more about the benefits of our premium membership,

00:00:58.040 head over to peteratiyahmd.com forward slash subscribe. My guests this week are Dr. BJ Miller

00:01:07.120 and Bridget Sumzer. BJ is a hospice and palliative care physician with expertise in serious illness,

00:01:13.900 end-of-life issues, and death. He is the co-founder and president of Metal Health, an organization

00:01:19.420 providing support to patients and families living with illnesses, and he was a previous guest on

00:01:23.640 The Drive all the way back in November of 2020. Bridget is a licensed social worker who specializes

00:01:29.100 in helping people with serious illnesses, promoting connection and well-being, and working with patients

00:01:34.160 and their families during end-of-life periods. In addition to her private practice, she is a provider

00:01:39.700 at Metal Health and the Palliative Care Program for Adults at UCSF. I wanted to have BJ and Bridget on to

00:01:45.860 have a conversation, to explore the insights gained from working with people at the end of their lives.

00:01:51.760 What do they reflect on? What do they find most important? What I really wanted to understand here

00:01:56.440 was, what can the dying teach the living? In this episode, we discuss the physiological and emotional

00:02:03.920 processes of dying. What happens as the body shuts down, and how families interpret those changes.

00:02:10.680 Why our cultural aversion to discussing death leads to unnecessary suffering, and how acknowledging

00:02:17.800 mortality earlier in life can be empowering. The differences between palliative care and hospice,

00:02:23.540 and how our healthcare system often delays comfort-focused care until it's too late.

00:02:28.800 What suffering really means, how it's not just physical pain, but a threat to one's identity and reality.

00:02:35.580 The importance of honesty and emotional courage at the end of life, and how dying can bring profound

00:02:40.120 emotional, spiritual, and relational clarity. Insights from decades of working with people who are

00:02:46.100 encountering their death, what patients regret, how they grow, and what really matters in the end.

00:02:52.000 We talk about this idea of how people die the way they lived, and why cultivating emotional,

00:02:58.000 spiritual, and relational awareness while we are alive shapes how we die, probably more than anything else.

00:03:05.000 We talk about the role of forgiveness, acceptance, and connection in dying as well,

00:03:08.460 especially self-forgiveness and the ability to be with what we can't control. And ultimately,

00:03:13.740 we talk about what the dying can teach the living, not just in terms of how to die,

00:03:19.280 but perhaps more importantly, in terms of how to live. So without further delay,

00:03:23.460 please enjoy this discussion with BJ Miller and Bridget Sumster.

00:03:27.640 BJ, amazing to have you back again. And Bridget, great to meet you for the first time. Thank you

00:03:39.220 guys both for coming out here. BJ, you and I go way back. You're a previous guest on the podcast,

00:03:43.940 and we've spoken a little bit about some of the topics we're going to get to today.

00:03:47.200 But when I reached out to you a few months ago to talk about this idea, you immediately suggested

00:03:54.780 bringing Bridget along. So let me just share with folks what I wanted to talk about, and I would

00:04:00.320 love for you to share why you felt that this would be a great three-person discussion as opposed to a

00:04:04.380 two-person. I reached out to you and I said, look, I want to understand more about living, and I have

00:04:10.200 an idea that we could learn a lot from people who are dying. And people who listen to this podcast

00:04:15.720 know that I think that quality of life matters as much and potentially more than length of life.

00:04:21.580 And a big part of that probably comes down to things that people think about during their life

00:04:27.280 and during the end of their life, and maybe that there are regrets that people have that only surface

00:04:31.380 at the end of life. So anyway, I kind of ran this idea by you. Actually, I think I ran the idea by

00:04:36.020 you as do you even know anybody that would have thoughts on this? And you said, I'd love to talk about it.

00:04:39.880 And so, yeah. Well, first of all, thanks for having us, Peter. It's good to see you, buddy.

00:04:46.440 And I just love the setup for this conversation. I think we're very happy to be talking to you

00:04:51.840 in general, but also to continue to form the, it's not quality of life versus quantity of life

00:04:59.140 kind of false dichotomy that you've done so well to re-approximate. So we're really happy to be here

00:05:05.440 and talk about this stuff. But why Bridget? I mean, so for me, a couple of thoughts. I mean,

00:05:10.260 one is I just love Bridget and her mind, and we get to work together in myriad ways over the years.

00:05:15.440 And the subject, you'll hear us again and again, we're going to thwart the idea that there's an

00:05:20.660 objective and approach to death that is the way to go. You're not going to hear us citing much data.

00:05:27.880 It's an easily studied phase of life. What data do exist tend to be qualitative. With all that

00:05:34.840 subjectivity, it feels really important to have other voices sharing their point of view on sort

00:05:40.340 of a similar outlook. So that's in part why Bridget, and also too, for both of us, which is,

00:05:45.780 Bridget, I don't mean to speak for you, but I think one of the things we should get up front too is

00:05:49.980 my work in the last four years has pulled me farther away from being at a bedside.

00:05:55.780 But both of us have spent many countless hours in hospital bedsides and other places

00:06:00.160 that we'll be drawing from. But I think to get to the questions that you're interested in answering,

00:06:07.240 so much of the work preparing for dying begins earlier in life, one way and another. So the idea

00:06:14.940 that I think for your audience to imagine deathbed scenes that in the final moments,

00:06:20.220 there's this great epiphany or a climax of some sort can happen, but that's really not the norm.

00:06:29.200 A lot of the action is in the days, weeks, months, years preceding the death moment. I mean,

00:06:35.440 death is a moment. And so one thing I think we want to get across as you've brought quantity and

00:06:40.900 quality of life, we need to bring dying and living together. They are part of a whole. They're not at

00:06:46.400 odds. And so when do we begin dying, Peter? The second we're born.

00:06:50.460 Exactly. So in some ways, all of us have some access to the subject already. Bridget and I are

00:06:57.140 just a little bit closer to it on some level. Bridget, what drew you to this space? I'm sure

00:07:02.600 this is a question you get asked the moment people find out what you do. It is an uncomfortable

00:07:07.480 place to stand. What's drawn you to it? We all have our places in the world. And while this is

00:07:16.020 an uncomfortable place, maybe from the outside for me, it is a pretty comfortable place. And that was

00:07:21.460 what got me there. I had many people in my life die and I was in pretty close proximity to those

00:07:27.860 deaths and I wasn't freaking out. And so there was something in me. I looked around and a lot of other

00:07:33.260 people were freaking out and I was sort of like, oh, this is weird. Am I unaffected? Am I guarded in

00:07:38.760 a way that makes it some kind of numb? And no, actually, it was more just that there was something

00:07:44.340 in me that was okay around dying and also really curious about it. So that's how I got to this work.

00:07:55.280 Can you say a bit more about that? If you're comfortable, what were some of the experiences you

00:07:58.660 had growing up? My cousin, Kristen, died when she was 13 and I was 18. She had pulmonary primary

00:08:06.980 hypertension. I was with her the day she died. And as you can imagine, a 13-year-old dying is a pretty

00:08:14.740 chaotic scene. She was not in a like official dying process that anyone was recognizing. So it was

00:08:21.560 crisis-y and traumatic. And there was just a stillness in me. I mean, I was very affected. There's a lot of

00:08:28.500 emotion. I felt fear and overwhelm, but I also felt really able to be there.

00:08:36.240 For others?

00:08:37.500 I was 18 and the adults around me were, as you can imagine, all over the place. And so it was less

00:08:45.160 about others, although I felt quite connected to her. It was more about being able to be,

00:08:51.820 like stay in my own body and be in my own experience and pay attention to what was happening,

00:08:57.440 make contact with what was happening. So it was a pretty internal experience and awareness. It

00:09:04.200 wasn't until later experiences with one of my best friend's moms a few years later that I felt sort of

00:09:10.180 that capacity in relationship to others as like a main supporter. That first imprint was really like,

00:09:17.440 there's something in this experience for me.

00:09:20.440 Hmm. PJ, people who listened to our first episode will be familiar with your story.

00:09:27.400 Invariably, there are a few people here who aren't. You want to give the super Reader's Digest version

00:09:31.860 of your story and how it probably shaped a lot of what you do today?

00:09:36.380 For sure it did. I went into medicine very simply because I had been a patient. It's not like I was

00:09:42.180 preordained to head into medicine or I had never even considered it. But at age 19, sophomore in college,

00:09:48.900 around the time, Bridget, you're having your experience at the bedside one way or another,

00:09:53.700 I was in the bed thanks to an electrical injury. At Princeton, I was screwing around on a commuter

00:10:00.300 train and climbed up on top and I had a metal watch on my left wrist and the electricity arc to the

00:10:05.960 watch. That was that. So I came very close to death. You could say part of my body died. I lost both

00:10:13.160 legs and one arm, part of them. And so that was a really big wake-up call.

00:10:19.000 For people who aren't familiar with that type of injury, I've seen you without a shirt on. It's not

00:10:23.300 like, oh, we just cut these things off and you'll be, we'll be home Friday and we'll see you at clinic

00:10:27.680 next week. The magnitude of these burns, the skin grafts that are required. How long were you in the

00:10:32.680 hospital?

00:10:32.960 I was in the burn unit for about three months. So burn units are a special place. It's not,

00:10:41.920 I don't know what to compare a burn unit to for the patients or the people providing the care. It is

00:10:47.540 very, very special people in those units.

00:10:50.260 Yes. And careers tend to not last very long for a lot of reasons. These are houses of pain of a

00:10:55.860 certain kind. So anyway, three months in that particular setting, which says a fair amount to

00:11:01.900 your point about the complexity of electrical injury. I mean, that means I was on the edge for

00:11:06.920 about three months.

00:11:08.240 Did you lose kidney function?

00:11:09.980 I don't recall that. I don't recall that. I wouldn't be surprised if it was dinged. I remember,

00:11:14.760 I remember looking over at the monitors many weeks in and my heart rate was 190 and just sitting there.

00:11:21.660 There's a lot of fallout from an injury like that. And it takes a long time for the body to settle in

00:11:26.940 and declare what's going to live and what's not. So the amputations were sequential. They take

00:11:31.860 a little bit, see what tissue is viable. All the while, the risk of the way generally people die

00:11:37.480 from burns is infection because you lose your immediate defenses, your line of defense of your

00:11:42.080 skin. So hypersterile environment, no windows, nothing natural about it at all. Anyway, so that

00:11:49.440 went on for a long time until I was out of the woods. And then it was clear I was going to survive

00:11:53.320 and then becomes the sort of longer work of learning to cope with this new body.

00:11:59.880 Entailed a lot of mourning, a lot of grief, a lot of effort, a lot of creativity on my behalf,

00:12:06.440 as well as a lot of people around me. So it took many, many months to get out of that setting from

00:12:12.260 the burn unit into a step-down unit and then into a rehab unit and then outpatient. And then begins

00:12:17.980 the work of re-entering the world. And that's its own challenge with a visible disability.

00:12:23.600 And as you say, the skin grafts, I was, you know, I used to be so ashamed of that look. I used to

00:12:29.400 cover it up. There was the work of getting used to it and being comfortable in my own skin, literally

00:12:35.100 again. And that took about two years before I was willing to show anybody this. Five years again,

00:12:41.480 hit another milestone for me to sort of being, inhabiting my own life again on some level

00:12:46.720 and being anything other than an object to glare at. So anyway, there's a lot to say about it in a

00:12:51.920 very slow process and it's ongoing. I recently had a procedure. We don't need to go into details,

00:12:57.700 but it's fallout from a central line that was being placed in my neck that got botched and

00:13:04.580 clotted off. And 35 years later, I had fallout from that. So it's an ongoing process all the time.

00:13:11.660 I get new legs every two years or so, and that's its own process. So it does not end.

00:13:17.740 So a moment ago, you alluded to the idea that movie deathbed scenes are probably the exception

00:13:23.860 and not the rule. I want to kind of explore this idea a little bit more, but I also want to

00:13:28.420 help people maybe understand at the population level, what death really looks like. So on this

00:13:35.560 podcast, we talk a lot about causes of death. People who listen to me are very familiar with the

00:13:39.940 four horsemen, and we know about cardiovascular disease, and we know about cancer, and we know

00:13:45.600 about neurodegenerative disease, and we can talk forever about these things. But we don't really

00:13:52.480 talk about the very, very end, perhaps with the exception of a fatal myocardial infarction.

00:13:59.720 And about 50% of MIs are fatal, but about 50% are not. And they're just setting you up for

00:14:06.820 maybe heart failure or something else. So as difficult as it is, I'd love for you to sort

00:14:12.320 of explain the mechanics of death. And we can start with the more common cause of death,

00:14:17.060 which is cardiopulmonary death. We could talk about brain death after, but I'd love for both

00:14:20.840 of you to sort of describe what's happening both medically, socially, cognitively to the

00:14:27.060 individual through that process.

00:14:29.460 Peter, do you mean like the moments leading to the death as the body's shutting down?

00:14:33.560 Yeah. In those final hours, what is really happening? What does it mean to die of cancer?

00:14:40.640 You know, I think for many people, it's a very foreign idea that this woman had breast cancer.

00:14:45.920 Okay, there were cells in her breast that all of a sudden acquired mutations. Those cells escaped

00:14:53.340 from her breast and went to other parts of her body. But there's still a bit of a disconnect.

00:14:57.900 Why did the invasion of those cells to her bones and her lungs end her life?

00:15:04.360 Bridge, you want me to talk a bit about sort of the medical physiological stuff?

00:15:07.860 Yeah.

00:15:08.000 And you can talk about some of the social.

00:15:09.760 Does that sound right?

00:15:10.460 Yeah.

00:15:11.260 Starting with the sort of more cut and dry anatomical physiological things happening as

00:15:16.820 a body's trying to die. And I like that phrase, trying to die, because we often find ourselves

00:15:21.740 intervening in a body that's trying to die. It is one thing to get right out of the gates here is

00:15:27.480 bodies die, living things die. I think a lot of us absorb a notion of death that it's some

00:15:34.060 foreign invader or something that comes out of the woods and grabs us. And otherwise I was just fine

00:15:39.040 and then not. No. And as you know better than any of us, there are all sorts of things we can do to

00:15:45.700 promote life. And there are a lot of ways we're wired to hang on to life and to run from anything

00:15:51.440 that's a threat to us. Those are all true and all natural, but included on the list of natural

00:15:56.780 things that we do is die. That's what a body's supposed to do. I just want to get that clear.

00:16:01.700 There's nothing wrong with you for dying. This is the way it's supposed to go. So your body knows

00:16:06.540 how to do this. So let's talk about what the body knows how to do. I mean, in general, depending on

00:16:13.540 the cause of death, whether the pathway might be cancer, as you're mentioning, or heart disease

00:16:18.480 or neurodegenerative diseases, there's a final common pathway of a body kind of shutting down.

00:16:24.380 And it tends to shut down by organ system. And it doesn't follow a neat and tidy pathway.

00:16:30.420 It can happen spontaneously in a kind of a moment. They're here and then they're gone.

00:16:35.000 But very often, especially these days, most of us, like 80 plus percent of us will die of chronic

00:16:40.400 illness. We will meet the thing that eventuates our death well in advance of the death. So we'll

00:16:47.280 get that diagnosis that someday will be the thing that ends our life. We could talk about that. That's

00:16:52.940 its own ball of wax that comes with that fact. Whereas in the old days, many of us, most of us

00:16:58.280 died more spontaneously. You're very alive and you're very dead. Not a lot of in-between. So in this in-between

00:17:03.780 thing, to get to find your question, Peter, is this sort of shutting down phenomenon. So

00:17:09.100 oftentimes, if we're trying to prognosticate, help a person or family get a sense of how much time is

00:17:14.920 left, we're looking at things like, are they in and out of bed much? Are they getting up and out of

00:17:21.260 bed? So if you're asleep on the couch or in the bed 50% of the day, that's sort of a progressive

00:17:28.560 process, more and more fatigue, more and more tired. That usually in the context of chronic illness

00:17:33.580 tells us we're heading towards the end. An interest in food and fluid is a big one. So

00:17:39.400 a body trying to die, a GI tract that's on its way to shutting down, will stop sending

00:17:45.820 hunger signals. And this is a big one for the audience to hear because a lot of us,

00:17:51.900 food equals nutrition, equals nourishment, equals life. So if we see someone we love or ourselves not

00:17:58.360 eating, the impulse would be, well, put some food into us. That's life. I don't want someone to

00:18:03.400 starve to death is often what we hear. And also love, right? That's how we show our care.

00:18:07.580 Exactly. Symbolically, the act of feeding another is the nourishment, the love, to your point,

00:18:13.220 Bridget, comes with it. There's so much around food. But before we cut over to Bridget to explain

00:18:18.860 more of that piece of the puzzle, the body, again, is sending you a signal, don't put food in me

00:18:25.280 because it will hurt. If a gut is not able to process the food, it sits in place and can cause

00:18:31.200 pain. Same with fluids. If we're forcing fluid into a body that's trying to die, that fluid will

00:18:37.720 pool and cause trouble. So the judgment I call when to push the food and fluid and when not is up to

00:18:43.920 really a dialogue and a song in response with the patient. You might try a little bit of fluid and if

00:18:49.320 that ends up in their lung or ends up swelling, then we pull back. But back to your question,

00:18:54.180 so as a body's trying to die, it will stop sending signals for food and fluid. And that's to be

00:18:58.940 generally respected, not pushed past. Mental status. So people often get really fuzzy in their

00:19:05.300 thinking. Delirium is very common. So oftentimes they'll be disoriented, think it's 1912 and they're

00:19:12.960 in a forest somewhere where they're in a hospital bed. So that's very common.

00:19:17.120 And BJ, delirium is not uncommon in the hospital. A lot of times with otherwise very healthy patients who

00:19:23.820 are in the hospital to get surgery, the loss of circadian rhythm, the use of narcotics and other

00:19:30.520 medications can easily induce delirium in a person who's otherwise not going to die.

00:19:34.940 Is this a different form of delirium and what is really underpinning it?

00:19:39.520 I don't know that it's a different form of delirium per se. It's a similar pathway in that

00:19:44.400 it looks the same. So you can have a hyperactive delirium, which are very easy to spot. Someone's

00:19:48.740 jumping up and down on her bed and going nuts and acting in a way that's not comporting with the

00:19:53.520 context of sitting in a hospital bed. So hyperactive delirium can be easier to spot.

00:19:58.860 Very often it's hypoactive delirium, which we often miss, especially in the hospital setting.

00:20:04.040 Might just be a little tangential thinking or not quite clear on what day it is.

00:20:08.120 Something that's not so obvious. And very often the person's just silent.

00:20:11.180 And that's more often the case, I'd say at the end of life, it's more likely to be a hypoactive

00:20:15.740 delirium. And so it may be hard to spot. And the person's been sleeping a lot anyway, so you might

00:20:21.440 miss it. But one reason to bring it up is because if you don't know what to look for, I think a lot

00:20:28.480 of family members and loved ones will be at the bed trying to eke out every last moment with this

00:20:34.220 person and looking for clues about what's going on for them and last relational moments and exchanges.

00:20:41.180 And very often I've heard from a lot of people reports of, well, gosh, my husband never said

00:20:47.360 a mean word to me in our 50 years of marriage. And I've been traumatized for the last two years

00:20:53.580 since he died because those last words to me were this vulgar something or other, or he told me to

00:20:58.940 get out of his, some harsh comment. Oh, one of those big takeaways for your audience, just please

00:21:04.780 keep delirium in mind because what it also means is that person who is delirious, they are not

00:21:09.880 themselves. So whatever they're saying, you really cannot take it literally. You really cannot take

00:21:16.420 it literally. So that poor woman that was suffering for, you know, if someone had told her about

00:21:22.140 delirium, then she would have understood. She took it very literally and was suffering immensely. So

00:21:27.840 anyway, that's a note about delirium. It does feel like an important moment to pause just to

00:21:32.160 note a couple of things, which is delirium at the end of life. We take as seriously as we would in

00:21:38.680 a more acute setting where someone's in the ICU with expectation to recover. And we think about

00:21:44.220 environmental factors that influence delirium, like lighting and noise and interruptions,

00:21:49.760 because if we can minimize delirium, we want to want to treat it and care for it. I think the other

00:21:57.000 thing about this space is that we enter into the like rich and nuanced and complicated space of

00:22:03.220 interpretation and the meaning that's being made around what's happening. So in that story,

00:22:09.520 I was sitting at a bedside once with two daughters and their mom was dying and she had been mostly

00:22:15.140 quiet. I hadn't really talked in a couple of days and we're sitting there talking about her and telling

00:22:20.420 stories. Her kids are telling me about her and she opens one eye and she kind of sits up and she says to

00:22:25.860 her daughter, I love your jacket. And I looked at the daughter and the daughter just bursts into

00:22:32.020 tears. I'm sitting there thinking like, oh, this is so nice. I'm expecting something positive. And the

00:22:38.460 daughter's like, she's never complimented my clothes before. If anything, she always looked at my dress in

00:22:45.000 this critical eye, like this is so off. And I think that could be one of those projections that we're going

00:22:49.980 to get to the end and dad's going to say, mom's going to say the thing that we never heard them

00:22:55.640 say. And they may, and that might not feel good. It's complicated and so interpersonal and personal

00:23:05.080 and subjective. And it's one of the reason why two of us being here together and why this work is done

00:23:11.880 often in teams, because we could both be in the room with the same person and have very different

00:23:16.900 kind of hits or interpretations around what's happening, what's most important in the room, what

00:23:22.300 needs to be tended to.

00:23:24.620 God, but there's so much to say about this stuff and that delirium thing on this point of altered

00:23:29.120 consciousness and what people are saying, what's coming out of people. It's also true that deep, dark

00:23:34.920 secrets can sometimes get revealed. That's also true. So much needs to be interpreted and it's

00:23:40.360 therefore held lightly. These are final moments. You may never get the clarity of what mom or dad or that

00:23:46.220 person actually meant in that comment, which is another trick to holding death in our living is

00:23:53.200 to hold it lightly. We will find ourselves wanting to apply a story of meaning on all of this stuff

00:23:58.320 as humans, what we do. But one of the great lessons around this work is just to hold that

00:24:04.900 carefully and lightly. It's not always what we think it is. And on that note of delirium too,

00:24:10.260 I will say as a medical person, I was taught that delirium is inherently a kind of suffering,

00:24:15.760 that it's uncomfortable, that to be confused, to be disoriented is itself uncomfortable and is

00:24:21.060 certainly problematic for the loved ones. So we always medicated it with antipsychotics,

00:24:27.200 haloperidol and others. Thorazine, just shut it down. I will say my own arc of my career,

00:24:33.160 and as I've sort of diluted the medical piece with other ways of thinking, I'm not so quick to shut that

00:24:38.820 down. There may be something either vital happening for that person in the bed to express whatever's in

00:24:46.160 there. It may be something that's helpful for the person to hear. I gave you the counterpoint that

00:24:50.840 it's hurtful for a loved one to hear in a decontextualized way. But I think one of the

00:24:55.660 meta messages here is dying can't always be, shouldn't perhaps, maybe to use that hard word,

00:25:03.360 be so tidy and immaculate and clean and perfect. I want to disabuse, I think we'd both like to

00:25:09.700 disabuse that notion of that that's a good death, a quiet death. I've increasingly would not medicate

00:25:16.880 a delirium unless I had a conversation. If you were my patient, I'd say, Peter, hey,

00:25:21.340 there might be moments where you can get a little confused, et cetera. And if that happens, would you

00:25:25.460 rather, maybe there's an opportunity for me to ask you, would you like us to kind of err on the side

00:25:30.080 of medicating that and help you sleep through it or talk to family about that? But the bottom line

00:25:35.000 here is it's not such a one-to-one thing. When we see this, that means suffering. That means

00:25:39.300 medication. It's much more mysterious than that. One of the things I've been thinking a lot about

00:25:45.100 lately is how people died hundreds of years ago and thousands of years ago. So let's use thousands

00:25:54.120 of years ago before the advent of any medicine at all. So admittedly, they weren't living that long

00:25:59.800 and admittedly life expectancy would have been into the mid to late thirties. But people always

00:26:06.420 confuse that for meaning nobody lived beyond that. Of course, that's not true. It just means so many

00:26:11.720 people died young. Infant mortality was through the roof, tons of trauma and infection. But clearly

00:26:17.740 there were people that were living into probably their sixties and I'm sure some of them were dying

00:26:23.900 of cancer. So I wonder, absent any medicalization of death, what death looked like then? Do we know

00:26:31.540 anything about this? I mean, I don't from the books. I mean, I can imagine. And I think we knew that

00:26:38.260 people died more acutely. But to your point, that's probably because they just, they didn't know they

00:26:42.820 were harboring a tumor or atherosclerosis or whatever else. So, and I think an average human had a

00:26:48.640 different relationship to the day-to-day suffering and pains that went with being alive. And I think

00:26:54.380 modern life has tempted us with the idea that we could always be comfortable and that pain is a

00:26:59.420 problem to root out and fix quickly, get back to the norm, which is comfortable always, which is just

00:27:05.600 crazy talk. So I think part of it is we've induced people's pain by offering these fixes to them.

00:27:11.900 By virtue of having something to offer your suffering, we might be more primed to tune into our suffering

00:27:17.980 and seek that fix for it. And we've pulled this ourselves forward over time through modern life

00:27:23.640 in such a way that back in the old day, I don't imagine that people were so distracted by their

00:27:28.860 daily aches and pains. So I'm kind of getting off your question. I don't think we know, at least among

00:27:34.980 us, I don't think we know from a historical, like I couldn't tell you factually what used to be the case.

00:27:41.500 But watching patterns and knowing that human nature hasn't probably changed so much in the last couple

00:27:46.300 hundred years per se, I think one is that people harbored a much that lived closer to death and

00:27:53.380 lived closer to pain. And so in some ways they suffered less because it wasn't tainted by a sense

00:27:59.600 of injustice or why me? I'm projecting. Which is an irony because as I think about a person dying in

00:28:08.680 their eighties today, I think of that as kind of a remarkable privilege that we could be alive in

00:28:16.760 this period of time where we could make it into such an old age. But yet at the same time, it feels

00:28:23.860 like a tragedy, even though ironically, the tragedy is those people that were dying thousands of years

00:28:29.440 ago. I want to ask you a question, Bridget, unless you wanted to say something else about that, but I was

00:28:32.700 going to ask you a question about pain. Please. Okay. So when you're talking to somebody who makes

00:28:38.600 the decision to enter hospice care or palliative care, I want to come back to making sure people

00:28:43.840 understand the similarity and difference. Let's take an example of an individual who is cognitively

00:28:49.680 completely intact, but is faced with a terminal illness. And let's maybe even talk through different

00:28:54.480 examples. Somebody that's got something as debilitating as Lou Gehrig's disease, where their mind is

00:28:59.700 completely intact and they're suffering a neurologic disease that's going to kill them versus an

00:29:04.580 individual with a cancer that has metastasized and is just a matter of time. What are their greatest

00:29:09.540 fears when they come to you? And where does physical pain and discomfort rank on that list?

00:29:16.480 I mean, it's such a humbling question. It's a little bit hard to answer when you put something

00:29:20.580 like Lou Gehrig's disease and cancer next to each other.

00:29:23.900 Pick one and let's talk through it.

00:29:25.600 Yeah. I think the thing I want to say sort of before picking one is the path that gets

00:29:30.480 you to the intersection where you are thinking about entering hospice or able to tolerate that

00:29:36.660 idea is very different. As you know, if you're facing neurologic illness or cancer or heart failure,

00:29:44.320 the experience that patients and the folks around them have had, maybe quite short, maybe a decade,

00:29:51.380 maybe with really successful treatments, maybe this downward feeling slope the whole time. And so

00:29:58.520 you're really primed, I think, in different ways at that intersection, depending on what this last

00:30:04.820 chapter has been like. Have you been mostly healthy and felt pretty good and something happens quickly?

00:30:10.680 Have you been in and out of the hospital sort of in this endless cycle? You're holding

00:30:16.040 very different experiences and people have honed their muscle of adjusting and adapting and adjusting

00:30:23.560 and adapting very differently depending on their experience of the illness they've had.

00:30:28.600 It's also really, really colored developmentally depending on where that person is in their life. Are they

00:30:36.880 42 with two young kids? Are they 85 having lived a life they feel pretty good and full about? And so

00:30:46.140 those are a few of the layers of context that really inform.

00:30:51.120 Given how much there is to unpack there, and now I realize I want to go into all of that,

00:30:55.420 let's take the step back and help people understand the difference between palliative care and hospice care.

00:31:00.560 So I sort of think of it as palliative medicine is the big umbrella. Palliative care is the big umbrella.

00:31:05.760 And hospice care is the very end or the backside of the umbrella. Palliative care is a medical

00:31:11.760 specialty usually provided by a team for folks with a serious illness. Serious illness can be defined

00:31:18.420 lots of ways and is defined differently in different health systems depending on how they're staffed and

00:31:24.500 how their palliative care programs are created to function, what purposes they're serving. But

00:31:29.240 some of the, and BJ, you jump in at any points, but some of the big differences is that

00:31:34.800 with palliative care generally, there's no limitation around any disease directed or modifying

00:31:41.620 therapies you might be pursuing. And you don't have to be dying inherently or even clear that

00:31:50.360 you're facing death. You could be diagnosed with a very serious cancer that actually has pretty

00:31:55.360 robust treatments and you could live for quite a long time. Meaning many, many years. So in that

00:32:00.540 situation, what is the objective of the palliative care team?

00:32:04.200 To think really holistically about who is this person? Where are they in their lives? How do they

00:32:10.220 make sense of what's going on? What do they understand about their illness? Who's supporting

00:32:14.600 them? All really grounded in this, are there ways that we can help this person feel sort of as well as

00:32:21.260 possible to treat the symptoms related to serious illness, to treat the symptoms related to the

00:32:26.980 treatments of different serious illnesses, but in the context of whole life, which means on a clinic

00:32:34.120 day, you could be seeing two people that seem on paper generally the same, similar age, demographic

00:32:40.680 backgrounds, diagnoses, and be dealing with really different things when you walk in the room.

00:32:45.700 No matter how you slice it, the goal is, the focus is quality of life, period. Whether it's

00:32:50.860 palliative care or hospice. And by the way, for both Bridget, so it's inherently interdisciplinary,

00:32:55.180 as Bridget was saying. That's why Bridget's social worker and I'm a medical doctor, but we work with

00:32:59.540 chaplains, nurses, music thanatologists, potentially art therapists, volunteers. When the subject matter is

00:33:05.560 suffering and quality of life, there's no one discipline that has a lock on that stuff. But whether it's

00:33:11.380 palliative care or hospice, the focus is really on helping someone feel as well as possible. And that

00:33:17.400 is an inherently holistic question because it gets at their identity.

00:33:21.980 Yeah, it's as well as possible as defined by them.

00:33:24.940 Yeah.

00:33:25.300 And so for someone, that could mean very aggressive pain management. And for someone else,

00:33:30.400 they could have a different relationship to the experience of pain. And they wouldn't put that at

00:33:35.020 the top of the priority list. They might put more concrete or relational supports higher up on their

00:33:42.880 list. The beauty of our jobs and our work is to meet this person in this moment in time and identify

00:33:49.700 what's up for them, what's most important, and where it is that we get to meet them to work towards

00:33:56.320 quality of life as defined by them.

00:33:58.800 So what is the transition then for an individual from being under the broad umbrella of palliative

00:34:05.140 care into a more narrow, defined level of care as hospice?

00:34:10.860 I mean, I think there's some world of ideals in that, and then there's what actually happens.

00:34:16.260 And the reality in this country is that folks are admitted to hospice very, very late. The length of

00:34:22.700 stay on a hospice program in this country is something like a three-week average. And so it's

00:34:28.640 actually quite little bit of time. And when I think about when hospice is a good fit for folks,

00:34:36.740 I think about wanting to stay out of the hospital, being in a place where they are ready to or being

00:34:43.760 forced to grapple with the reality that there is not anything left to do to change what is happening

00:34:50.200 in their body, to change the cancer, to delay the neurologic illness, and or folks that are more

00:34:57.920 explicitly ready to be supported in their end-of-life care or in their transition.

00:35:04.960 And just done with chasing the treatment done with chemo. Chemo might have something more to

00:35:10.020 offer them in terms of lifespan, but they are just electing to be done with that. Whether chemo and

00:35:14.900 other things have run their course and there's nothing left to try, which is often the case.

00:35:18.700 Or they feel done with what's left to try.

00:35:20.520 They're telling us that they don't want to try anything else. Either way,

00:35:23.840 they would be much more likely to be hospice ready.

00:35:27.900 Now, you're saying the average length of stay in hospice, and really there are,

00:35:32.580 as I'm aware of it, so correct me if this is not correct, there seem to be three paths to hospice.

00:35:38.160 There's hospice in your home, where you go back to your home and a hospice team comes there and

00:35:42.980 cares for you in your home. There is a palliative care ward inside a physical hospital that provides

00:35:48.940 hospice care, but it's still within a hospital. And then there are outpatient hospice facilities,

00:35:55.640 dedicated facilities for hospice that are not hospitals. Would those three encompass how

00:36:01.880 hospice care is delivered, or is there another one?

00:36:04.200 Sort of, in terms of sites of care.

00:36:07.080 This is where it starts to get really wonky. It's complicated.

00:36:09.500 And you can shut us up, Peter. There's so many tributaries. But to back up a little bit,

00:36:15.260 it may be orienting for your audience here. So, Bridget's totally correct. Palliative care is the

00:36:20.480 larger umbrella. Hospice is the subset of palliative care devoted to the final months of life.

00:36:27.060 So, to be real clear, same philosophy in a lot of ways, but by insurance and reimbursement lines and

00:36:34.980 by policy designation, you can get palliative care alongside curative intended care. You cannot do so

00:36:42.860 in hospice. When you go on to hospice, you have to give up that curative intended care.

00:36:48.600 And not just that. I mean, you can't have an IV line.

00:36:51.380 Generally speaking. So, the way it's set up is a crossroads. We'll make the point that dying and

00:36:56.260 living look a lot alike. But in the man-made world of policy and healthcare structure, there are some

00:37:02.540 important forks in the road. So, one of them to go on to hospice is you no longer have access to or

00:37:07.660 don't want curative intended care and things that go with it. And also, someone somewhere has to

00:37:13.520 certify that should nature run its course, you likely have six months or less to live. So, those

00:37:19.040 are the two forks in the road to qualify for hospice. Neither of those applies for palliative care. So,

00:37:24.060 that's a really important distinction. One other point to make there is while palliative care is the

00:37:28.280 larger umbrella, hospice is the older one. So, we started in this country with hospice. And since

00:37:34.800 1982, when Medicare got in the business, we had those restrictions. And then people in the 80s and

00:37:41.240 90s realized, like, why are we waiting to the final weeks and months of life to deliver this kind of

00:37:45.700 loving care? And so, the palliative care was born as a younger, bigger sibling to get outside of those

00:37:51.200 restrictions. So, it's a wonky history. Well, what's interesting is you just said that hospice care was

00:37:56.500 the original. It was six months of life expectancy. And today, we're at a point where median or mean

00:38:04.780 is three weeks in hospice. Well, if that's true, and we think about what we know about what an

00:38:12.180 individual looks like when they have three weeks left of life, this is usually a person who's already

00:38:18.120 in delirium, already in the early stages of organ failure. This is a person who probably is already

00:38:24.800 spending more than 50% of their time sleeping. And what I guess I'm hearing you say, or maybe I'm

00:38:30.900 imputing, is should they have moved into hospice sooner? Have they been unnecessarily discomforted

00:38:39.220 by pursuing therapeutic intent until that three-week mark on average?

00:38:45.520 In broad strokes, in general, the answer is yes. I think we know that patients and families wait too long.

00:38:51.680 They're suffering more than they need to and taking on treatments that are no longer helping them

00:38:56.540 for a longer period of time. That there's what can feel like a charade portion of care.

00:39:03.200 And there's a lot of reasons. Like, patients and families not wanting to look at that piece of

00:39:07.180 the puzzle yet. Denial is a thing, you know. And also, referring physicians perhaps is the bigger

00:39:14.300 reason that they are not seeing the writing on the wall or don't want to or whatever else.

00:39:19.300 So it's very often that the physicians don't bring up hospice until way late in the game. So for many

00:39:26.580 reasons, I think it is a generally true statement that we wait too long to invoke hospice. We wait too

00:39:33.060 long based on our own stated goals of feeling peace and having some comfort towards the end and not

00:39:38.380 wasting our time doing things that don't help us. And we also get into these situations where my wife

00:39:44.320 tells a story about one of her very close friends who died in 2018. She had an abdominal cancer and

00:39:51.000 her wish was to die at home. She was readmitted, I think, for a bowel obstruction and she was never

00:39:58.420 able to get out of the hospital. So she died in the hospital. And this is also probably not an

00:40:03.980 uncommon situation where I think back to patients I took care of who heroic measures were done.

00:40:11.260 So maybe someone had an aortic dissection or a ruptured abdominal aortic aneurysm.

00:40:17.700 They're old. They already have organ failure. You go ahead and do it. But this is a person who was

00:40:23.100 cognitively completely intact when they came in. Three weeks later, they're intubated. They're on

00:40:27.440 dialysis. You can't transfer that person to hospice because they can't have the ventilator. You can't

00:40:33.040 have the dialysis. The moment you turn those things off, the person expires. So they're going to

00:40:36.440 expire in an ICU. Never what they wanted, probably. But how often, in your experience,

00:40:41.800 are people in that no man's land where they now have missed the window to go into hospice?

00:40:46.880 All I can say is not uncommonly. I don't have numbers to cite, but that is not an uncommon story.

00:40:52.400 And that's why if the second I hear someone say, I never want to die in a hospital,

00:40:56.820 my ears go up as a potential referrer. Like, we should really look to get this person to hospice as

00:41:01.780 soon as possible. BJ, I've never met anybody who wants to die in a hospital. I'm going to go on

00:41:06.380 record right now and say, I don't want to die in a hospital. Now, I hope that my death is 35 years

00:41:12.900 away, 40 years away, if I'm lucky. I don't want to die in a hospital. I've watched too many people

00:41:18.480 die in a hospital. It's never, ever, ever what you imagine it should be or could be. The goddamn

00:41:25.500 beeping, the smells, the noise, the chaos. It is awful. Yeah. So if you were my patient,

00:41:32.660 you were our patient, it'd be interesting to go down that road a little bit. And Bridget,

00:41:37.040 you may have different things to say. But hearing that and the stridency with which you say it versus

00:41:42.140 like, eh, I don't want to be in a hospital. Hospitals suck. But to hear that kind of level of

00:41:45.660 passion. Which comes from having been there enough, right? Most people might not be as adamant about it

00:41:51.060 as I am, but they haven't watched a thousand of these deaths. Exactly. All the more reason for me

00:41:55.160 to really take what you're saying very seriously. You know whereof you speaketh here. So if I were

00:42:00.140 in any way involved in your care, I would just pull up a chair and say, Peter, I heard you say

00:42:03.560 that, buddy. And first of all, I might ask you like, is that a throwaway comment? Do you mean that

00:42:08.340 today? Really get behind with what you're saying there and to see how durable a choice that is.

00:42:14.060 And then I might say to you very explicitly, like even in the abstract, Peter, someday, as you know,

00:42:18.880 there's going to be something that's going to come along and is going to eventuate your death.

00:42:22.580 So you and I, we're going to keep a real hawk's eye on this together. And there's going to be

00:42:27.120 crossroads along the way around treatment decisions. And what your oncologist or cardiologist or whoever

00:42:32.920 doctor may not share with you is what it means to take on this treatment and what might happen

00:42:37.880 together. You and I will interrogate all these decisions and really dig in to see what might land

00:42:44.080 you unexpectedly in a hospital in ways that you're going to feel stuck. And I would also say to you,

00:42:49.440 Peter, part of dying well is also letting go of all the things you can't control. And there's

00:42:54.680 going to be so many things that we can dictate. That's right. I could get into a car accident

00:42:59.040 tomorrow that ends me up in an ICU where they struggle valiantly to save me, but I still die.

00:43:05.320 That means I'm dying in a hospital. Yeah. So I would sort of disabuse you of some absolutism

00:43:09.740 around this, but you have just given us our marching orders as the thing to let out for you

00:43:14.920 as Peter Atiyah to not suffer more than you need to where you are when death comes is a huge point

00:43:21.800 for you. So that's noted. So we'll wrap that into our care together as we move through time

00:43:27.320 and we'll make decisions with that in mind. But that is because you were explicit about it. And you

00:43:33.060 say most people, I don't know who wants that hospital. That's true. But that conversation rarely

00:43:38.340 actually happens. Rarely actually happens to get that goal stated and into the kind of care plan.

00:43:43.840 Let's give a couple of examples of where that discussion has relevance. So now let's go back

00:43:51.000 to a couple of these examples. So you've had that discussion when a person is still in palliative

00:43:57.240 care before transitioning to hospice. Are you sometimes waiting to have that discussion in

00:44:01.460 hospice for the first time? About where? Yeah. Where?

00:44:04.420 I think it depends. I mean, I think it depends on the kind of clarity or adamance a person comes

00:44:12.180 into. So it might be one of the first conversations you have. If somebody's had a really visceral

00:44:18.380 experience in their own life, it could be the first thing they're thinking of with the diagnosis of

00:44:23.820 advanced cancer or something. And it may be a conversation that's happening weeks into hospice,

00:44:32.640 depending on how things have evolved with the family and or how they're changing.

00:44:37.540 I do want to just step back, which is I have seen very beautiful hospital deaths.

00:44:43.100 I think the reason I'm so jaded is where I came from, you're running codes on people who are dying.

00:44:47.820 Yeah. They're dying while you're doing chest compressions on them and you're shocking them

00:44:52.240 and you're breaking ribs. So yes, I should really clarify. I'm coming at it from a very narrow

00:44:56.900 point of view that has maybe, maybe skewed my view too much.

00:45:02.500 And that's worth a conversation.

00:45:03.720 We're all informed by those experiences. I'm not a physician, so I haven't had this experience,

00:45:08.620 but I think coding someone while they're dying is a incredibly painful experience for the team

00:45:14.240 providing that care potentially. But I have seen beautiful hospital deaths and I have seen people

00:45:19.500 very clear in their sense that not dying at home is the goal. That to die in their living room with

00:45:27.240 their kids watching is intolerable to them. To know that they're leaving their family with that imprint

00:45:32.580 because it is an experience that we've plucked out of our living rooms and most people don't have a

00:45:38.580 familiarity or comfort with it. Plenty of people, maybe especially younger people who are dying,

00:45:45.680 are very clear like, no, no, I'm not going to do that at home. And if that means I'm in an acute

00:45:49.680 care setting, like, okay, that's fine with me and preferred.

00:45:55.040 And by the way, from an insurance perspective, because that must factor into this, is there a

00:46:01.320 fundamental difference in what an insurer, either CMS or otherwise, will provide based on those options?

00:46:08.140 Great question. I kind of go back to your initial laying out of the three trajectories into hospice. And

00:46:14.700 I think we should be really clear. The lion's share of hospice is what they call and reimburse for as

00:46:22.720 quote, residential hospice, which means in a place someone's living, their home, their assisted living.

00:46:29.240 In a car sometimes. I mean,

00:46:30.820 Right. Really where people are. It also could include hospice facilities, like the resident,

00:46:38.280 hospice residences.

00:46:39.320 Which are uncommon in this country.

00:46:40.960 Very uncommon.

00:46:41.280 Very rare.

00:46:42.140 Yeah. So 80% of hospice happens where people live.

00:46:45.680 Okay. And the remaining 20 is either in a hospital, hospice unit, or a dedicated hospice facility.

00:46:52.140 Or nursing home.

00:46:53.280 Or nursing home.

00:46:54.020 Why is that rare? I would have assumed that the most economical and desirable place to provide

00:47:01.400 hospice care would be in a dedicated facility.

00:47:04.580 It's the assumption. So I've had hundreds of conversations being the social worker to go in

00:47:10.420 and describe hospice and give hospice education. And what the assumption is, is hospice is a place

00:47:16.340 that you go today. And overwhelmingly, that is not true. Hospice is a service that comes to you where

00:47:22.320 you are. I mean, there's a lot of people that fear like, you're suggesting hospice, you're going to

00:47:26.920 send me away to die. And that is a barrier because people don't want to be sent away. But then there's

00:47:31.960 also disappointment of, oh, there aren't like a plethora of choices of places for me to go. We

00:47:37.700 actually have to like figure out how to hunker down and make this happen at home.

00:47:42.380 And what does that mean in terms of resources? What is provided? So if an elderly couple

00:47:47.300 who live alone, one of them becomes terminally ill, elects hospice, let's just assume that if it's

00:47:54.620 the husband who is sick, that the wife is not physically going to be able to do much. She was

00:47:59.240 able to care for him before he had one critical last event. Because these things work typically as

00:48:04.560 a step. He's sick, but then he falls. And that's the straw that breaks the camel's back. Does the home

00:48:11.080 provision cover full-time support? No, nothing even remotely close.

00:48:17.620 So how would she care for him if he is now bedridden, requiring pain medication, requiring

00:48:23.900 medication for sedation, and any other form of comfort care? How would she clean him?

00:48:29.700 Yeah, you're pointing to, I think, one of the biggest systemic issues we have in this space,

00:48:36.300 which is little to no reimbursement for caregiving.

00:48:39.380 So what does home hospice mean then, if you're not giving that?

00:48:43.060 It means an expert team that's available 24 hours a day and comes to you basically as needed.

00:48:49.300 That could be once a week. That could be once a day. Certainly, I think the goal is often like

00:48:56.080 a couple of times a week. This is part of why hospice is underutilized, is because it doesn't

00:49:02.600 always have the resources that people need to manage care at home. And the reality is, is that when

00:49:09.340 somebody goes home, it's usually a communal effort. Folks are coming in and out when they're not

00:49:15.720 working, they're taking off time working, they're pulling in friends. If there's the resources,

00:49:20.300 they're hiring caregivers, which is quite expensive thing to do. It's a huge lift on caregivers,

00:49:28.060 care partners, and families to have someone die at home.

00:49:30.560 I didn't realize that. So you're saying that if a person elects home hospice care and they need

00:49:37.780 full-time support, they're paying for that out of their own pocket.

00:49:41.840 Yes.

00:49:42.160 Yes.

00:49:42.920 That can't be cheap.

00:49:44.160 No.

00:49:44.800 No. I mean, there's multiple ways to hire caregivers. In the Bay Area, for example, the range,

00:49:50.120 the hourly range would be something like $20 to $55 an hour, kind of depending on if you're hiring

00:49:55.940 privately in your community or agency. No, that's just like a home health aid.

00:50:00.320 Yep. Yep.

00:50:01.560 God, there's so much to say in this stuff here, Peter. I mean, as you're talking,

00:50:05.560 you're reminding me about this home point, just to make this case. A lot of us in the abstract

00:50:10.060 would say, I want to be at home when I die. But then when it comes down to it, when weeks turn

00:50:15.520 into months and the family's burning out because it's at least 23 hours of the day is family and

00:50:22.820 friends doing the work. So a lot of us say, I want to be at home. But when it comes down to it,

00:50:27.720 that is not always necessarily the easiest place.

00:50:30.660 Or possible.

00:50:31.220 Or even possible for all these reasons. So to your question about why are there not more hospice houses?

00:50:37.380 If they are not willing to pay to have someone come to your own house,

00:50:39.940 they're certainly not going to pay for you to have a facility.

00:50:42.600 Exactly. The medical system separates the social services from medical services. So

00:50:47.980 the room and board of a facility, the infrastructure of the house, those will not be considered medical

00:50:54.900 issues. So therefore are exempted from coverage. So I worked at one of the very few hospice houses

00:51:01.120 in the country and it had to close. As famous as it was the world over, this sweet little six-bed

00:51:06.840 hospice was known all over the world. And it couldn't make it because there was no financial

00:51:11.720 pathway. It's complicated. There should be more of these places. And to note around your very

00:51:17.040 reasoned incredulity there, because it's much less expensive when the alternative is to go back to

00:51:22.680 an acute care hospital. But as you know, this is not a rational system per se.

00:51:27.740 You know, it's why you see of that couple that you mentioned where he's dying and she's home and

00:51:32.380 she can't bathe him. She can't deal with his bedpan. It's why you see in those stories, people go into

00:51:38.880 the hospital, go to subacute rehab, max the Medicare days, go home, go back into the hospital,

00:51:45.380 because there is this sort of not always explicitly called out or intended sort of like,

00:51:51.720 how do we maximize the benefits that are here?

00:51:54.940 It's one of those examples. And unfortunately, medicine is full of these, especially in the United

00:51:59.780 States. I have a lot of great things to say about the healthcare system here. Probably know where I'd

00:52:03.980 rather live with respect to healthcare, but there are so many examples just like this, where both

00:52:10.580 the payer... So actually, I would say all three, the payer experience, the provider experience,

00:52:16.240 and the patient experience would all be better with a different system.

00:52:21.600 Totally.

00:52:22.460 It's more expensive. It's worse for the patient. It's worse for the care team to have the patient

00:52:29.960 do what they have to do now to game the system. It's a real shame that even if you didn't care

00:52:35.780 about the quality of an individual's life, if you just acted economically...

00:52:39.640 Just the bean count. If you're just following the beans, that's part of the joy and craziness of

00:52:44.620 working in this part of the healthcare system. You get a line of sight, as you say, there could be this

00:52:49.760 alignment where it's better care for everybody involved and cost less money. The whole part of

00:52:55.300 care in the hospice world has done a really good job over the last 40 years of gathering data. We

00:52:59.880 save the health system lots of money. We improve care. This stuff works, but it's still not routinized

00:53:05.680 in the system for all sorts of reasons.

00:53:08.780 The six-month prognosis component of the hospice benefit was really an arbitrary choice in some ways

00:53:15.220 that was about getting it funded. The sort of original thinkers were like, yeah, this should be a

00:53:19.680 year. And that's probably more right. You should be eligible if your prognosis...

00:53:25.220 But the fact that it's three weeks on average tells you how many resources are being drawn out of the

00:53:34.800 highest price provider. Yes.

00:53:37.860 If we're thinking about the last weeks and months and the swirl that's happening because you're getting

00:53:43.720 sicker, all of these things are changing in your life. So much is changing. Your touch with the

00:53:48.760 healthcare system is really high. That in that time to also get really sober, maybe for the first time

00:53:56.640 about what's important to you, where do you want to be? Can you see this thing clearly? Like it's

00:54:01.040 almost an impossible time to do that.

00:54:03.680 Let's focus on that for a second because this strikes me as a cultural issue. You two live in

00:54:08.940 this world. I would say I'm adjacent to the world, but I don't live in it. And most people aren't even

00:54:14.720 adjacent to it. So death is a really foreign thing. The reason I suspect that this can gets

00:54:21.680 kicked down the road so much, so much in fact, that after all the can kicking, people get to the

00:54:28.180 end of their life. There's no road and there's just a pile of cans. So what is it culturally that

00:54:34.380 prevents us from talking about this when we're 50, when we're 60, when we're 70, when we're 30?

00:54:41.460 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.

00:54:47.720 I don't want to say it's a mystery, but it's just something that we don't want to talk about. And

00:54:53.500 as such, I really believe that that's why we get to that three week. Okay, fine. We're pulling the

00:54:58.180 plug. It's three weeks and you fall off a cliff kind of thing. Do we know anything about other

00:55:03.000 cultures? How is it in Japan? How is it in Europe? How is it in, in other parts of the world? Do we

00:55:08.100 know anything about how end of life functions there? A little bit. Culturally, there's a lot

00:55:13.140 to study. It'd be so fun to take a couple of years and really study the anthropology around dying and

00:55:18.260 how cultures do this differently. We've been dying a long time.

00:55:22.320 It's our greatest skill.

00:55:23.560 Yeah. I mean, you're really good at it. You will not fail at it.

00:55:26.960 It's the only thing you will not fail at.

00:55:28.760 Promise you. And I think what you're calling attention to, there's the culture. So Scandinavian

00:55:33.600 cultures, Japan, a place that venerates its elders. And aging and dying are different,

00:55:38.700 but they bump into each other a lot. So my armchair read on, say, life in Japan,

00:55:45.140 where the comfort of being in old skin might be a different experience, but you're still left with

00:55:51.860 the sort of natural phenomenon, cultural phenomenon of aging, bumping into this healthcare system idea.

00:55:57.360 And that is the cognitive dissonance. We have these systems that are engineered and wired in

00:56:03.460 such a way that are so at odds with mother nature on some level and so blind to cultural issues in

00:56:10.620 the name of science in so many sort of reductive ways. Still, if you were in Japan, I think you'd

00:56:15.800 still find a healthcare system that struggles with this question, even as the culture maybe doesn't

00:56:21.220 as much. Similar probably in Scandinavia. But I think in those places, in the Scandinavian model,

00:56:27.640 one of the things that comes up for people at the end of life is other living issues like housing,

00:56:32.480 like your relationships, they're still there. So one of the things that makes dying harder in

00:56:37.280 this country is the social determinants of health in society are not cared for. So you still have your

00:56:42.760 housing issues when you're trying to die. You still got bill paying things that are, you know,

00:56:46.660 that's the stuff that makes dying extraordinarily hard in some cases or in many cases.

00:56:51.240 So you're saying the wider net of the social safety net here compared to a country like Canada

00:56:56.160 or Scandinavia or Japan, presumably, just adds one more stressor to an already stressful situation.

00:57:04.240 Largely. And in any one sense doesn't do it justice because as you said, the healthcare systems,

00:57:08.740 these places, they can also do amazing work. And so I don't want to just blindly categorically

00:57:13.620 denigrate a healthcare system. In any country, there's some good things happen, but it's such

00:57:17.480 a mixed bag. And as many problems as it solves, it creates some other ones, especially around issues

00:57:23.400 that people are struggled to look at. To your point, still holds. We do have a problem in why

00:57:28.460 Bridget and I came this far besides to see your smiling face. But to talk about this in such a way

00:57:34.020 that allows an audience as large as yours to begin to think about this before it's too late.

00:57:40.740 And this is, I think, all of our work as citizens to begin to rope this part of reality into our

00:57:47.340 views so that we can prepare ourselves for it and we can live with these realities and not be so

00:57:52.060 surprised by the fact that we die someday. In part, it's so that we learn how to advocate for

00:57:56.980 ourselves versus, yeah, I'd love to see our health system mature around these issues and we'll continue

00:58:01.700 to work on that or towards that. But I think the bigger note for your audience is what can each of

00:58:06.520 us do to prepare ourselves in ways that the health system is not? To die well in this country,

00:58:11.180 at some point, you kind of have to say no thanks to medicine. One thing your audience needs to

00:58:15.380 appreciate and why advanced directives are so helpful, for example, is the default modes of our

00:58:21.000 healthcare system would be just do more stuff, prop your body up, anything to give you a pulse.

00:58:25.900 Unless you've written or stated otherwise, we're going to just try to protect you having a pulse.

00:58:31.340 Most of us don't equate having a pulse with actually really being alive and that becomes a problem at

00:58:35.920 some point. We're in this carnival where we can really prop up a body almost indefinitely. You

00:58:41.820 have to find a way to say no to that and unwind what that hospital can do. You have to get out of

00:58:48.120 the way of that to die peacefully in this country. Does that make some sense?

00:58:52.140 PJ, it makes so much sense. And as you're saying it, I'm just reflecting on the internal struggle that

00:58:58.160 I think most nurses and doctors experience. We don't talk about it much, but I remember during

00:59:04.560 residency, the pride that I took in how heroic we could be, what we could do for a patient in the

00:59:13.100 ICU, how many central lines I could put in you and how I could look at all the different cultures

00:59:20.340 and figure out the five antibiotics you need and how good I was at managing your dialysis and getting

00:59:27.700 that CVVHD to manage the pressure and this and that and how I could alter the aortic, intra-aortic

00:59:34.040 balloon pump to just keep your heart. Like there was such a sense of awesomeness in like this

00:59:39.180 technology. It is awesome. But then you take a step back and you're thinking, what am I doing?

00:59:44.520 What am I doing? This is a physiologic experiment. It's not a life anymore. Yeah. Yeah. And you would

00:59:51.920 say, well, is there a chance that this person is going to recover? Well, of course, there's always a

00:59:56.420 chance, but how big does that chance need to be for the expected outcome to justify what you're

01:00:02.000 doing? And there's two ways to answer this question. The first is economically. That's an easier way to

01:00:06.720 answer it because expected outcomes are probabilities. It's what is the expected outcome of this survival

01:00:13.300 multiplied by the cost of this intervention? You take the dot product of those, you add them all up.

01:00:17.640 There's the cost of your healthcare system with respect to end of life care. Let's put that aside.

01:00:21.660 There's the human one. There's the, how many people are spending their last weeks or months

01:00:28.620 in an ICU where they are for all intents and purposes, no longer there. The amount of sedation

01:00:35.120 you have to put on a person to keep them in that state is extreme. They're now swelling into a

01:00:39.780 Michelin man. And is this what we want their family's final memories to be of that? As you're

01:00:45.840 talking, I just like feel, I have such visceral memories of sitting in those family meetings in

01:00:50.980 the ICU where the person in the bed is unrecognizable. And the expectation that physicians

01:00:58.660 and nurses and social workers and spiritual, you know, the healthcare teams should be able to have

01:01:05.200 all of that expertise knowledge, not all of it, just some of the expertise knowledge that you just

01:01:09.720 outlined. And then also the very nuanced interpersonal capacity to, with a relative stranger, ask some of

01:01:19.660 the biggest philosophical questions in a moment of crisis. I mean, that is like in some ways a beyond

01:01:26.800 human expectation of physicians. And many do it with profound grace and beauty, even when it really

01:01:35.580 doesn't feel like it doesn't feel like it to them. But that's where the consumer side or the patient

01:01:40.540 side is like, come in, having wrestled with it, not because you were given a diagnosis of a serious

01:01:47.280 illness, but because we all do die. And that gets back to your original question, like, this is hard

01:01:53.840 because it's kind of impossible to imagine not existing anymore, to actually psychologically,

01:02:00.380 spiritually, philosophically grapple with I'm here and I won't be. And my children are here and they

01:02:07.620 won't be. And my spouse is here and they won't be. And maybe I can kind of wrap my head around that

01:02:11.800 being true for my grandparents, maybe. And then my, you know, this is a fundamental contemplation of

01:02:18.280 being human. And it's a good muscle. It's a life-giving muscle, I think, to start to flex when you are

01:02:26.700 healthy, when you feel good, when you're like, it is actually true that I don't know when I'm going

01:02:31.820 to die. It could be because I'm hit by a bus. It could be from some unexpected instantaneous

01:02:37.300 physiologic thing, or it could be some process when I'm 85. Like, we don't know. And collectively,

01:02:45.420 we have a hard time talking about and being in spaces together when fundamentally we don't know.

01:02:53.320 So, let me ask you a question. Let's assume we put you in a role. You're an advisor that walks

01:02:59.740 through the oncology ward, outpatient oncology. So, they bring you in for a consultation with,

01:03:06.420 and maybe you tell me, this is actually not a bad idea. But they just say, look, we're going to bring

01:03:09.900 you into the outpatient onc ward on Tuesdays, and we just want you to meet the patients. Now,

01:03:14.320 these are patients that are in all stages of oncology. So, let's assume that this is a breast

01:03:19.980 cancer clinic. And that means you are dealing with women who have just been diagnosed with

01:03:25.700 pre-cancer, ductal carcinoma in situ, DCIS, all the way up to women who have progressed through

01:03:32.440 every intervention and are now facing completely unresponsive stage four cancer.

01:03:38.080 You are introduced to Jodi Smith. She's 42 years old. She's a mother of two.

01:03:42.740 And she was recently diagnosed with what is turning out to be a stage three breast cancer.

01:03:49.580 So, she has a mass in her breast that they have removed. And at surgery, they also found lymph

01:03:55.040 nodes under her arm. But the workup of the rest of her body found no evidence of cancer.

01:04:01.480 So, she is now going to undergo chemotherapy plus or minus radiation. And by the way, I'm not entirely

01:04:06.740 familiar with the odds on this, but let's just say it's a 50% chance cure rate. There's a 50% chance

01:04:13.580 that this is never going to come back. There's a 50% chance it will come back. And by the way,

01:04:17.400 if it comes back, she will die from this. It will go on for years, but it will come back in a distant

01:04:22.920 organ. What would you say to her when you introduce yourself? And let's just assume she understands why

01:04:28.740 you're there and what you do. So, if she says to you, do I really need to meet you? Shouldn't I be

01:04:33.660 meeting my cancer doc? What would you say? I mean, the do you need to meet me question is

01:04:38.880 interesting. What I would want to know is what has this experience meant to her so far?

01:04:46.640 Let's say she says, this has been the most jarring, terrifying thing I have gone through in my life.

01:04:52.820 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

01:04:59.960 I wouldn't be a grandmother. And I'm now being told there's a 50% chance I won't be a grandmother.

01:05:06.220 But I'm a fighter and I have faith that these are amazing doctors and it's a coin flip. I'm going to

01:05:13.540 get heads.

01:05:14.680 Yeah. Yeah. I mean, I would join her in that. I think I would also want to normalize the fact that

01:05:23.840 she has never imagined anything other than being a grandmother. I mean, I think so much about those

01:05:28.440 initial encounters or meeting of somebody is about rapport building, right? You have to get

01:05:34.860 into a back and forth so that they feel you as another person there that's curious about their

01:05:40.600 experience. And you were quick to kind of add context for me, but actually the process of

01:05:46.700 someone feeling comfortable to say, I've always imagined being a grandma and I'm going to be a

01:05:50.960 grandma.

01:05:51.980 That's probably three discussions.

01:05:53.260 Sure. Well, it's at least, there's at least I probably maybe know her kids' names or she's told

01:05:57.740 me something like, she's asking me, yeah, it's okay skipping ahead, but it's also skips

01:06:03.420 over into like the relational component that people I think are sometimes caught off guard

01:06:12.160 by and also really welcome because they have been having this experience and nobody's had

01:06:18.320 the time to say, how are you? What does this mean to you? Oh, you're waking up at night.

01:06:22.980 What are you thinking about when you wake up at night? What is the biggest worry that this brings

01:06:27.580 up for you? Has it crystallized something into greater clarity?

01:06:32.860 I mean, it seems to me that first of all, based on the definition of palliative care,

01:06:37.220 she would be a great candidate for palliative care because she is still 100% full core press

01:06:42.340 treatment. But palliative care would bring in, she doesn't seem to me that she needs someone to

01:06:47.400 manage her pain. She probably needs someone to talk to, talk about what she thinks about when she

01:06:52.220 wakes up at four in the morning, scared to death. Yeah. Right. I mean, she may not need somebody

01:06:56.660 to help with her pain, but she may need somebody to learn about other impacts of the treatment and

01:07:03.460 how that's affecting her life. And is there anything to do to mediate that? So maybe her

01:07:08.180 interest in sex or her sexual function has changed and nobody's asked her about that. Nobody's thought

01:07:14.240 with her about like, what can you do to adjust and adapt to still have access to that part of your

01:07:18.700 life, even though you have stage three breast cancer or with stage three breast cancer?

01:07:24.380 How many of the theoretical patients that I just described, of which there are tens of thousands

01:07:30.000 in this country, if not hundreds of thousands, how many of those patients are in palliative care right

01:07:35.560 now? In very few.

01:07:36.560 Fraction.

01:07:37.240 Yeah.

01:07:37.680 Why?

01:07:39.000 A couple of reasons come to mind. One is that people conflate hospice and palliative care. And so

01:07:43.660 people say, I'm not ready for palliative care. When they're saying, I'm not ready to think about

01:07:46.980 dying yet. The idea is once I'm in palliative care, we're not fighting. We're not treating,

01:07:51.560 which is untrue.

01:07:52.740 Not true.

01:07:53.260 Untrue.

01:07:53.780 And once you get into the room and you say what palliative care is and people meet you and

01:07:57.740 they feel you, they're like, who wouldn't want this?

01:07:59.960 I'm wondering if I should be in palliative care right now, by the way.

01:08:02.240 The reality is palliative care is just good health care.

01:08:06.060 Yeah.

01:08:06.160 It is just one of the crazy things are rebranding, but yes.

01:08:10.020 Yes, it really does. I mean, oftentimes we're doing these very basic things that feel very

01:08:15.440 elemental, like sitting down and saying, hi, Peter, I'm BJ, introducing yourself to some of

01:08:21.360 the magic of palliative care. I mean, that's a little extreme, but that's true. Often what

01:08:26.140 Bridget is doing or people, our colleagues are doing is just some very elemental work that gets

01:08:31.360 skipped over at everyone's expense. So that's true. But I also don't want to land there.

01:08:37.760 The work of palliative care, while often is very rhetorical, not just the prescription pad for the

01:08:42.140 MD, we don't value the psychological elements as much, the relational elements, existential elements.

01:08:49.640 So I don't want to say the work of palliative care is easy. It does tend to the fundamentals of

01:08:54.820 care in ways that the rest of healthcare doesn't, but it doesn't stop there. There is a real skill set

01:08:59.380 that Bridget has for meeting you, timing her questions, how she hears you, when she calls

01:09:05.420 this conversation and saves it for the next time, when she decides to bring up the potentials for

01:09:10.920 suffering, when she introduces mortality. Those are all, that's a real felt experiential thing that

01:09:17.560 doesn't just happen haphazardly. So I guess I'm saying two things. There's a real skill set to this

01:09:22.240 work that often gets short-sighted, which is another reason why palliative care doesn't get invoked

01:09:26.820 very often, is you'll hear physicians, especially in other people's health systems,

01:09:30.580 oh, I don't need palliative care. I do that.

01:09:32.660 Or they're not ready.

01:09:33.580 They're not ready or I'll do that because they're saying like, I care about my patient. I treat

01:09:38.040 their pain. That may be true to a point, but very often why people don't get palliative care,

01:09:43.200 back to your important question there, is one, a misunderstanding of what palliative care is,

01:09:47.400 two, an underestimating the work that goes into this relational stuff. And so therefore,

01:09:52.280 a lot of people pretend or think they're delivering palliative care when they're not.

01:09:55.900 And third would be capacity. We don't have enough of people who are trained to do this work.

01:10:00.280 The workforce is not big enough.

01:10:00.900 So those are big three reasons why people don't get into palliative care.

01:10:04.480 So let's say you get to know her better. Let's just say she says, you know,

01:10:08.160 I really love being able to talk with you about this stuff because I'm scared. And by the way,

01:10:13.360 this treatment's hard. My hair is falling out. I'm sick. I don't have the energy to like play with

01:10:19.140 my kids right now. Like there's a lot of stuff in life that is really difficult, even as I am

01:10:23.880 hopefully going through this journey to come out on the other side healed. How often would she get

01:10:29.200 to interact with the palliative care team? Is this an insurance-based question again?

01:10:33.240 A health system.

01:10:34.400 It's a health system staffing question and also question about in any given system,

01:10:41.280 sort of what are the named priorities of palliative care in that system, which can be quite different.

01:10:46.920 So there isn't a great way to answer that question. I think it depends on staffing. It

01:10:54.300 depends on if she has other supports, if there's a way to connect her to other supports. And I think

01:10:59.320 this is where our work at Metal Health, I think, folds in because the health system is not

01:11:04.960 staffed or primed or any other number of adjectives to support people in the ongoing way that most would

01:11:14.160 benefit from. That's really a community-based resource issue or intervention. It's like where

01:11:21.320 people are actually living their lives with this illness is where that support is going to come

01:11:26.220 from. And, you know, I think most people find that in their lives from their spiritual community or

01:11:33.560 church community or friend group. Most would benefit from having somebody outside of their lives.

01:11:39.360 Sharing your fears with me is very different than sharing your fears with your friend who's having

01:11:44.200 their own very personal, like, you can't die. How would I live without you? You're supposed to be a

01:11:49.560 grandma with me. Like, don't talk about that. They're bringing all of their own myriad protections

01:11:54.920 and guards from this subject into their caring for that person. I think so often when we meet people

01:12:02.940 in this counseling space, we might be the first person who hasn't, with all of the love and all of the

01:12:11.640 good intent, minimized what the person is sharing because it's hard to tolerate our people's fears. We want

01:12:20.660 them to feel better. We want that to stop for them. And so we say things like, oh, but you're going to be

01:12:24.460 fine. Like, look how well you've done so far. It's going to be okay.

01:12:27.620 So how would your interaction change if I put you into a neurology clinic and you were meeting people

01:12:37.040 who were all newly diagnosed with Alzheimer's disease? So now we have people who show up with

01:12:45.540 cognitive impairment, but they're still good. They're actually still okay. But they've now had

01:12:50.160 that amyloid PET scan that demonstrates the buildup of amyloid in their brain. And certainly to the

01:12:57.580 eye of a skilled neurologist, the diagnosis is unambiguously clear. It's a clinical diagnosis,

01:13:03.120 of course. They've now been given the diagnosis. You are in the early stages of Alzheimer's disease.

01:13:09.420 We don't know the speed at which this is going to progress, but we know that it's more or less

01:13:14.280 monotonically going to get worse. What are you asking that person?

01:13:19.700 I mean, this is a very beloved space of mine that I've gotten to spend more time in in the last few

01:13:24.420 years. And I think for a lot of people, one of my first questions is, what have the doctors told you?

01:13:31.360 What do you understand? Because a person may have had many visits with their neurologist and the

01:13:37.040 neurologist has given very clear information. Let's say that this person, for the sake of this

01:13:43.160 case study, watched their parent die of Alzheimer's disease. And there's a strong hereditary component

01:13:49.820 here. And they now understand. Let's just say they've been in denial for the last year while

01:13:56.020 they were noticing some changes. Exactly. They were like, oh, I'm probably just a little tired.

01:14:01.280 It's probably just a little distracted. But now they've been confronted with, there's the amyloid

01:14:07.460 PET scan. There's the C2N blood test. And here are the results of the cognitive test. And you are on the

01:14:15.720 same path as your mom or your dad. And they remember. They remember what it was like for the

01:14:21.580 last four years of that person's life. So let's assume that there's not a lot of ambiguity in their

01:14:27.800 mind about what's happening. What's going to happen. Yeah. I mean, I'd want to know more about

01:14:33.220 their experience with their parent. I'd want to know the things that they're most worried about.

01:14:38.800 I'm going to just say, I am most worried that I'm not going to be able to care for myself,

01:14:43.900 that the people I care about are going to need to take care of me and it's going to inconvenience

01:14:48.780 them. And I'm not ready to lose my mind. Like I'm young. Let's say this person is 68 years old.

01:14:55.800 This is on the verge of being early onset. And they're realizing that, that in another couple

01:15:01.620 of years, they might not be sentient. This is a high functioning individual. This is a person who is

01:15:07.220 still working, who is contributing, who loves their life. And they're basically mourning

01:15:13.480 the loss of that. Yeah. I would not interrupt their mourning. Of course, to their feelings. And

01:15:20.340 it's sometimes that's hard for me to like pluck questions that I would ask

01:15:24.860 out because it is such a like in the moment thing. Tell me more about how much you don't want this to

01:15:31.040 happen. Why? What's the worst case? What happens between now and there? There's a certain amount of

01:15:37.660 creating and allowing for space for people to say the things that they're catastrophizing in their

01:15:43.760 minds that they're so scared of that they don't want to have happen to lay that land in order to

01:15:50.020 come back to in a trajectory of, yes, you've laid out like a path, but also so much uncertainty actually

01:15:57.300 for like how the progression will happen and when and what the changes will be. Just how hard it is

01:16:02.140 to not know what that will actually really look like. What are the considerations? Because again,

01:16:08.320 they're just in palliative care. They're going to go and try all sorts of therapies. Deep down,

01:16:13.480 they know that the therapies in this space are far less efficacious than the woman you met earlier

01:16:18.760 with breast cancer where she's really got a shot. The most these therapies are going to do is slow

01:16:22.880 things down. But look, if you slow them down enough, maybe something experimental comes along. So

01:16:26.960 they're going down the path of, I'm going to do this palliative care thing because you seem like a nice

01:16:31.740 person and I like talking with you. I'm going to do everything I can to slow this down. So now

01:16:37.020 let's fast forward a year or two. Things are getting worse. What are the things you want to

01:16:41.920 understand before you're so far gone? Walk me through the things you need to do to help them

01:16:49.120 and their family prepare for what is effectively inevitable. I mean, BJ, jump in if there's things

01:16:55.180 bouncing around for you. Well, maybe I could say real quick to kind of just double click as they say on

01:17:01.300 what you are saying. I mean, the early work, whether it's a cancer patient or someone dealing

01:17:06.100 with Alzheimer's, the early work is so much of relational getting to know the person,

01:17:12.060 laying out a safe place for them to fall apart, share their fears without being shushed,

01:17:17.660 all that stuff. So Bridget's saying that I just really, that's really key. And that might take

01:17:21.600 all of the first visit. You may ask no questions about the diagnosis. It might take five visits before

01:17:27.040 you get to anything for the reason you're supposedly there. All of that is to getting to know a person

01:17:32.500 because we know there's some magic in a person being seen, bearing witness. Them getting to express

01:17:38.080 themselves is its own therapeutic value. But then as the provider, you are learning about what makes

01:17:44.460 this person tick, what inspires them, what turns them off, where their fears lie, et cetera. So you're

01:17:50.020 gathering all this knowledge that that'll help you as you go down the road with them over time

01:17:55.480 to be able to spot, to look around the bend a little bit for this person and see what might

01:18:00.500 be coming up for them. And then you can sidle up to them and say, hey, remember last time we talked

01:18:04.360 about this or that thing? Or remember you told me how much this or that thing is a source of fear.

01:18:10.000 I just want you to know I'm going to be here with you. It just lends a much more specific ability

01:18:14.980 for you to accommodate and accompany this person. That's so much of the work is really,

01:18:20.880 it's an accompaniment and looking around the corner with someone. Before we move off that into

01:18:25.400 other things, I just want that to get really clear what Bridget's points are. Not casual,

01:18:30.460 kind of, you're not just stalling for time. That is the early latticework.

01:18:33.740 That's the foundation.

01:18:34.600 That's the foundation. Then the person gets to feel seen, heard, and held. And then when that

01:18:39.380 trust is in place, a lot of other things become possible. So just to back up.

01:18:45.200 It's not inherent that because somebody saw their parent die of Alzheimer's and they've been

01:18:51.620 diagnosed with Alzheimer's and it's the worst thing that they could imagine. It's not inherently true

01:18:57.440 that it ends up being the worst thing that they could imagine. We don't tend to, I'm going to speak

01:19:03.360 in a massive generalization, but we don't tend to anticipate our ability to adapt very well,

01:19:10.160 especially when like the worst case thing is happening. Sometimes having been intimately involved

01:19:16.160 in this worst case thing, you surprise yourself or your kids surprise, you know, there's these

01:19:20.980 things that unfold that you wouldn't have guessed would be a part of the experience. And I think

01:19:26.020 I really try to hold space for that, to stay curious about like, okay, you're very sure that

01:19:32.880 this experience is going to look like this and together we'll see what it actually looks like and

01:19:38.720 feels like. In this instance, let's say that this person was also married or partnered. I'm just so

01:19:46.460 acutely aware of that spousal or care partner experience.

01:19:52.440 Sorry to interrupt you, but are they also a patient or is there a patient confidentiality thing where

01:19:57.040 you can't really be there to support them because your patient is the spouse?

01:20:02.360 The foundational documents about a care, the unit of care is the patient and family.

01:20:07.400 Oh, okay. So this is a very unique part of medicine then.

01:20:12.520 Yes. In a number of ways. And that's one of them.

01:20:14.480 We still bump into the Western autonomy individualistic, like the patient is the patient.

01:20:21.400 We are not documenting in the chart about their spouse or if we are, we're doing it very carefully,

01:20:27.140 but we're really thinking about the unit.

01:20:28.720 But you have more latitude because you can think of the entire unit of support that that patient

01:20:34.540 would define as their spouse. And in the experience of Alzheimer's, the person whose body that's

01:20:39.380 happening in, if we don't start to get better at this in a major way, her often experience is central

01:20:48.040 to their well-being. How far into this relationship are you broaching medical decision-making, power of

01:20:55.380 attorney, things like that? I mean, these are, are those difficult discussions in that they require

01:21:00.400 sort of a cognitive acceptance? Like I'm actually now putting medical decision-making into someone

01:21:08.440 in his hands who are not my own because in the future, I'm going to lose the capacity to make

01:21:13.620 those decisions. I mean, how difficult a discussion is that?

01:21:16.340 I think it really depends on the person. Have they really, truly managed all of those decisions

01:21:21.020 by themselves or they're used to some back and forth or they have a different model that's quite

01:21:25.100 intertwined? So for some people, that's really hard to imagine. I think in my experience in the

01:21:32.280 neurologic illness space, so often if a patient has someone, which not all do, that person's coming

01:21:40.680 to visits because they've been showing signs where they're not remembering or they couldn't get to the

01:21:46.340 doctor's office on their own or get the Zoom up by themselves, et cetera. So they're often presenting

01:21:51.400 with somebody else and there's immediately another person to engage with their experience.

01:21:58.580 The number of times spouses, adult children are immediately brought to tears with the question,

01:22:06.080 how has this been for you? Because no one has asked them, not because they didn't want to,

01:22:10.900 but usually because they don't have time.

01:22:12.700 Right. The neurologist is mostly there to think about the patient.

01:22:15.520 Yeah. Yes.

01:22:17.100 And this gets complicated. All these things are such tips of icebergs. I mean,

01:22:20.300 that unit of care thing, even in palliative care, and one of the reasons why we started

01:22:23.820 metal outside of healthcare is to make good on that promise. Yes, the unit of care is patient

01:22:28.540 and family, but when I was working in the medical system, in the cancer center or anywhere in the

01:22:33.180 medical, there's no way to bill for the spouse. So we'd sneak that family into the side door sometimes

01:22:40.300 to have an appointment with them, or we would dovetail it in the appointment with the patient.

01:22:44.880 So yes, there is space, at least intellectual and emotional space preserved for the family members,

01:22:49.580 but very often it's still short shrift because of the billing issues. So there's a lot to say about

01:22:55.300 that. And that's another reason why metal, I mean, probably 60% of our clients are the family members

01:23:00.180 because there's just no place, no one's asking about their experience to Bridget's point.

01:23:04.700 What are some questions you're going to ask that patient as their cognition is declining

01:23:10.920 and things that you need clarity on from them, their wishes? What do you want to understand?

01:23:18.640 Well, you brought up advanced directives and advanced care planning. Spent a moment on that.

01:23:23.200 We should all, if you're 18 in this country, you should have an advanced directive.

01:23:27.640 And my guess is virtually nobody who's young and healthy has one.

01:23:31.640 True.

01:23:32.200 I mean, virtually anyone who's older and isn't healthy has one.

01:23:35.080 Exactly. I mean, we ask these questions in studies and also just casually, if you give

01:23:39.180 a talk, say, how many people have an advanced directive? Maybe 20% of people raise their

01:23:43.300 hand. How many people think an advanced directive is really important? Most people raise their

01:23:46.940 hand. Many of us are not doing the thing we know we're supposed to do. This deferrable thing

01:23:51.340 like life insurance, you know. Anyway, so one public service announcement here is advanced

01:23:56.340 directives are very important.

01:23:57.640 And you can download a form online.

01:23:59.080 Yes.

01:23:59.620 You don't need a lawyer to do this.

01:24:00.860 No, you do not need a lawyer to do this. And the most important thing to come out of

01:24:04.600 an advanced directive, if you had to pick sort of one of the questions that gets asked,

01:24:08.260 it's probably the proxy. If, God forbid, you all of a sudden in an accident or something

01:24:13.560 happens and we can't ask you, Peter, what kind of care is important to you? Who do you

01:24:18.580 want speaking on your behalf in such a moment as that? And that's probably the most important

01:24:23.820 question to get clear on.

01:24:25.440 And you know, why would a young, healthy person think about that? So my first advanced directive

01:24:30.480 I was in my late 20s when I actually finally did it, even though I've been in these conversations

01:24:36.560 for a long time. And I one day was imagining something unexpected happening, not being able

01:24:43.300 to participate in a conversation lying in a hospital bed. I was imagining my parents who

01:24:47.500 do not speak to each other, trying to make decisions over their child. And my casual, mostly

01:24:54.780 casual partner at the time kind of sitting there trying to figure out how they belonged in the

01:24:58.660 scene. I was like, I don't want that for them. Regardless of what happens to me and my body

01:25:04.240 or what they actually choose, to actually put myself in the position of the people that those

01:25:11.060 choices would default to, I didn't want that for them. If I was at all sentient, I definitely

01:25:16.240 didn't want to hear it. I didn't want them in throes of totally unexpected grief to be trying

01:25:22.360 to negotiate that relationally. It's an awesome responsibility. I'm very honored to say the number

01:25:29.120 of people that have asked me to be the decision maker for them. I can't imagine how many have asked

01:25:33.660 you this. I mean, there are more than a dozen friends who have asked me this. And I say the same

01:25:39.360 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

01:25:44.460 that stick and just sign my name on there. Exactly.

01:25:47.660 We're going to have dinner. We're going to have a bottle of wine. We are going to talk this

01:25:52.000 through. I need to know how to do this job. I really need to understand what you want and don't

01:25:55.960 want. Good on you. Because a lot of people don't do that. And again, the job is not for you to

01:26:01.520 insert. It's not my will. Yeah, exactly. The job is for you to honor the other person's wishes,

01:26:06.800 speak on their behalf. So to do that well, you have to know the person's wishes. And that's not a

01:26:12.200 couple of questions. That's a big old conversation. And just as you do with a bottle of wine at

01:26:16.780 dinner, that's what we're doing with patients. You're setting a table that's comfortable. Often

01:26:21.320 you're sitting, you're asking intimate questions. As providers, you may be sharing intimate details

01:26:26.460 too, as part of a relational set, a table for intimate things to happen. So I just want to

01:26:32.460 borrow your table setting there. It's what we do too. It's an important piece of getting to this

01:26:37.200 level of detail. And it's also true, you don't have those conversations once. Bridget's saying a lot

01:26:43.380 of really important things. I want to double-click on another thing. The advanced directive, the conceit

01:26:47.520 is problematic right out of the chutes. You're asking someone to put themselves in this future-oriented

01:26:51.760 position where they're in a situation that they can't imagine, where they can't speak. And so what

01:26:57.180 will they want then? It's as best as we have. But it's a problematic tool. And as people move through

01:27:03.960 life with illness or disability, their realization of what they can or might like to live with shifts.

01:27:11.220 We have data around this. You ask a bunch of healthcare providers, if you were brought in

01:27:16.420 your own emerging department, quadriplegic from an accident, would you want your colleagues to

01:27:20.840 save your life? Most providers say, hell no, I could never live like that. Go ask most people

01:27:25.520 who live with quadriplegia if they're happy to be alive and say, yeah, I couldn't have imagined this.

01:27:29.960 Same with me. Hey, you're going to lop three limbs off. Are you cool with that? I'm like, no.

01:27:34.880 But as it goes in this life, we are adaptive. We have capacities that we don't know until something

01:27:41.780 comes along to pull them out of us. So part of this mind-bender of an advanced directive is to

01:27:47.520 allow room for a person's sense of themselves and their capacity to change in any direction.

01:27:54.340 So all of that is a preamble to say you have these conversations over time, multiple times,

01:27:59.040 and let the person change over time. This is one of those places where you want to focus on

01:28:04.960 the things that are important to you, the experiences that are central to good days,

01:28:10.240 to meaningful time. Because having counseled a lot of people actually in the acute moments of having to

01:28:16.620 make these decisions, being able to reorient them towards, you know, what I've heard you say is that

01:28:21.160 your dad was always in his garden. He wanted to be at home. If he could hear your voice, that's what

01:28:26.980 was important to you, blah, blah, blah, blah. The ventilator doesn't get us there. What are we moving

01:28:31.900 towards is much more motivating than not doing X, Y, and Z, not intubating, not resuscitating,

01:28:39.360 because those things for most people exist from scenes from TV shows and are still pretty far away.

01:28:46.440 But it is easier for people to choose the scene that we're going towards that they can square against

01:28:52.820 how they knew their person. There are people who are very clear about A, B, and C interventions

01:28:57.980 being something that they would never want. And I certainly honor that. Maybe I hold it with a

01:29:02.880 little bit of a grain of salt, but I honor it. I'm more interested in when I have been asked to be

01:29:07.840 in that role to understand what makes this person's life, not because it's going to perfectly

01:29:14.480 translate. If I can't dance under the full moon in Bali, like my life is not enough. And you're like,

01:29:20.300 okay, but what if you could like see the full moon from your bed? We adjust.

01:29:25.520 That's a really important point, Bridget. I've never thought of it that way.

01:29:28.600 I probably have just always had a bias towards, okay, what are the things we don't want to do?

01:29:32.460 What are the things we don't want to do? Right. Think about medical lingo, DNR, DNI,

01:29:35.540 no chest pounding, no intubation, blah, blah, blah, blah, blah. But I like this framing better of,

01:29:43.200 okay, what are the minimum set of requirements you need to have to still hold some delight in life?

01:29:48.600 And what do we need to get you there? Those are the steps we'll take.

01:29:52.540 There's some language around that, Peter, but there's a movement to change DNR to

01:29:55.560 A and D, allow natural death, to get away from the things we're not doing and the things that

01:30:00.460 we are doing, to make that point in it. Interesting. Has that taken hold yet?

01:30:04.160 I don't know that it's taken hold. There is an effort to try.

01:30:07.840 I like that.

01:30:08.620 To your point, it's a really, if we have a sense of what we're moving towards,

01:30:11.900 even if we have to be very flexible and allow our mind to change en route,

01:30:16.680 that's just a much more deliberate path. And it's also very helpful for those around us to

01:30:21.040 know what to do versus just not to do. What are the differences that you have both experienced in

01:30:26.680 dealing with dying cancer patients between those that are quote unquote old and those that are young?

01:30:32.340 I mean, of all the chronic diseases, cancer obviously disproportionately strikes the young.

01:30:37.080 People in their forties and fifties don't really have to worry about heart disease and neurologic

01:30:41.240 disease for the most part, but they're far from clear of cancer. There was actually an article

01:30:45.900 out recently that even suggests that the incidence of cancer is rising in young people.

01:30:51.460 So I'm curious as to what you've learned about living and dying through the lens of cancer in the

01:31:00.660 tragic cases. I'm just using this term sort of loosely where everybody agrees the 40,

01:31:06.420 50 year old dying of cancer is tragic versus the part of life when someone is in their 80s and

01:31:10.920 90s and dies of cancer.

01:31:12.780 Well, one thing that leaps to mind in my experience with younger people, I mean,

01:31:16.300 you can get very philosophical and say, what is old? And I've seen some kids die.

01:31:21.720 Oh, which I mean, that's a whole new level.

01:31:23.780 A whole new level of sorrow and senses of tragedy on some level for the parents very often.

01:31:30.020 A very different level of engagement or awareness.

01:31:32.700 Yes.

01:31:33.020 Potentially.

01:31:33.740 But I have, and right, actually the child, the kid, the young person, I have seen some,

01:31:38.780 we want to be very careful to not be judging and grading deaths. This is why the problem of good

01:31:43.380 death is a really problematic construct. And in terms of something instructive to learn from,

01:31:48.620 I've seen some younger people die so beautifully and adapt so remarkably to the reality that they're

01:31:55.320 living. It's just stunning.

01:31:57.700 Why do you think that is?

01:31:58.580 I mean, my sense is because, you know, you could say because

01:32:02.320 they haven't yet been around on this planet long enough to develop such concrete notions of

01:32:08.040 identity. I am BJ, I am this, I am not that.

01:32:12.000 Expectations.

01:32:13.280 Expectations.

01:32:14.140 When do you think that kicks in, BJ?

01:32:16.040 I think it's a spectrum.

01:32:17.640 Late teens, early 20s?

01:32:19.260 I would say something like that is our sense of, as we individuate and our identity sort of set up

01:32:24.900 as something relatively independent compared to our earlier years. I certainly feel different about

01:32:30.060 myself now than I did when I was 19. But to your point, I think, as we've said earlier, dying is a

01:32:35.840 natural thing. We'll all do it. Hey, what's the problem? But the problem is, A, that it's really

01:32:41.580 hard. If there's a problem around dying, it's the social pressures or the expectations from

01:32:47.580 ourselves or others that make us feel that we're doing it wrong or that there's something wrong with

01:32:54.180 me if we're dying, etc. This is where a lot of the problem comes. So a kid may just have a much

01:33:00.940 more fluid sense of themselves in the world. I think that's a big one. They may not have developed,

01:33:07.280 haven't seen enough of the planet to attach so firmly to it, perhaps. But those are just guesses.

01:33:13.060 There is a theme, and we have a colleague, Chris Adrian, who's a pediatric palliative care doc at

01:33:17.680 Middle. It would be interesting to talk to him. But that's my experience with younger people.

01:33:22.580 Now, it's a very different conversation with their parents. So that's one thing to say.

01:33:27.120 I mean, they give space just to pause and note how complicated it is because the grief,

01:33:32.280 the sort of anticipatory grief of a dying person is very different than the anticipatory grief of the

01:33:37.560 people that will go on to live without them. And that's the space that we're trying to negotiate

01:33:42.940 these decisions and make plans. Two very different developmental tasks overlaid in the experience

01:33:50.720 of children. And of course, this is not universal. But in those experiences of children who are clear,

01:33:55.200 like, I think I'm dying. Nobody's willing to talk to me about that. Looking around for another

01:33:59.760 sober person to engage with them.

01:34:02.940 That's just kind of an amazing thought. Just to pause on that for a moment. I've never really spent

01:34:07.140 much time thinking about it because in pediatric surgery, you saw some children who died,

01:34:12.020 but they were usually on a medical or pediatric service by that point. I don't really understand

01:34:16.160 what the metacognition is of a dying child. So a 10-year-old child who's got cancer, let's pick

01:34:22.340 something like that. They're aware that something's happening, I suppose.

01:34:26.160 Some certainly are deeply.

01:34:28.440 Yeah. More than often.

01:34:31.020 Sometimes with a more direct shoot to kind of the truthiness of what's happening than adults.

01:34:37.240 The adults around them, including the physicians and clinicians.

01:34:39.940 I think there's an arc for our development where we know a lot as kids and we go out in

01:34:45.500 the world and as adults and we take on, we try on all these other outfits for size and

01:34:49.540 do the things we're supposed to do and should and stuff. And then there's this can be this

01:34:54.200 return to a sort of a playfulness and a lightness within old age that would have you thinking

01:34:59.500 that our wisdom was never higher than when we were kids. We just didn't get seduced into

01:35:04.300 thinking that someone else outside of ourselves knew more than we did and started externalizing.

01:35:09.080 We could draw lots of fanciful narratives around that.

01:35:11.820 I mean, the fluidity with which my three-year-old and six-year-old will,

01:35:15.000 sometimes they'll wake up and be like, do you think Nana died last night? When are you going

01:35:18.900 to die? There is a curiosity that they have without the attachment actually to like the

01:35:25.640 deep meaning that we may as adults get into anticipating. And then because we're anticipating

01:35:33.500 feeling it, they can kind of just like ask the questions. Will you be alive when I die,

01:35:37.940 mom? Will you be old? They're just trying to figure it out.

01:35:41.160 They don't get in their own way in the same way.

01:35:43.400 Yeah.

01:35:43.720 Maybe as a way of putting them into project.

01:35:45.760 Yeah, no, totally. It's not comfortable.

01:35:48.560 I want to go back to something you said a second ago. You brought up anticipation of loss and death

01:35:54.000 and then the actual event and the loss once that person is gone. And obviously those two states exist

01:36:00.040 for the surviving. Only one of those states exists for the dying. So tell me about the experience

01:36:07.140 for the person who's going to die. What are the things that they express to you as their greatest

01:36:14.480 fears? How often is it, again, pain, physical pain? How often is it not existing? How often is it

01:36:21.440 leaving someone behind and their suffering? And then similarly, I'm curious as to what the

01:36:27.600 anticipated versus realized experience is of the loved ones.

01:36:32.100 I mean, I think for many people, there's real fear about the physiologic experience of dying,

01:36:37.840 of pain and other symptoms. And I think one of the beautiful parts of our work is in the nature of

01:36:44.100 people being linked to palliative care, hospice care, there's some ability to comfort that,

01:36:49.300 that we are here, we are watching those symptoms, we're working with you.

01:36:52.240 Could we say that nobody in the year 2025 needs to actually suffer during death? I mean,

01:37:00.820 is that too extreme a statement? For example, is there a pain that is so deep that it can't be

01:37:06.620 reached by the most potent narcotic? Is there a shortness of breath that is so significant that

01:37:11.860 it can't be offset and palliated by probably a narcotic as well?

01:37:16.680 Well, just from a sort of medication-y?

01:37:19.380 Yeah, medication physiology land.

01:37:21.220 At that end of the conversation, yes to your question, I think we can say that no one in 2025

01:37:27.440 needs to die suffering as long as you include the potential for sedation to be part of that.

01:37:33.760 It may take so much narcotic to quell your pain or your shortness of breath that we are actively

01:37:39.280 putting you to sleep. So if you include what's called palliative sedation, then I think that is a true

01:37:44.900 statement. I think I just want to make a quick note on the use of narcotics in this setting.

01:37:49.360 Like, narcotic is a police term. It's a term of law enforcement. And the medicines that are being

01:37:54.220 used in this time are opioids. And it's an important distinguishment because opioids are often one of the

01:38:01.840 central medicines in managing the symptoms related to dying and related to serious illness at a certain

01:38:07.220 point. And people, for good reason, in 2025 in the setting of how opioids exist in our culture are

01:38:14.800 scared.

01:38:15.980 I recently did a podcast with Sean Mackey, who's a pain specialist, and we talked a lot about opioids

01:38:20.620 because on the one hand, they are a very important part of the toolkit of a pain specialist.

01:38:26.740 They would be an even more important part of your toolkit. And they have been the most widely

01:38:33.060 abused class of drugs in the history of modern medicine. Those two statements can be simultaneously

01:38:38.200 true, but it doesn't detract from the former.

01:38:41.680 Yes.

01:38:42.020 Right.

01:38:42.440 Yes. There is a fair amount of work. Opioids are being used to manage people's

01:38:47.460 symptoms with serious illness. We need to pause and ask the questions of like,

01:38:52.020 how do you feel about this medication being prescribed? Do you have experience with it? Because

01:38:57.440 everyone comes with some imprint around the meaning of these medicines. And if we want to help people

01:39:03.940 use the medicines correctly to get to that place where they might be as comfortable as we're able

01:39:09.380 to get them, like we got to peel back the layers on the relationship to the medicines being used.

01:39:14.660 Is that a common phenomenon where people show up with a belief about this? And is the belief that it

01:39:23.040 sounds like a silly thing to say, do people think it's cheating? Do people think there's some

01:39:27.020 nobility in suffering through death?

01:39:29.300 Certainly some people do. Some people feel that pain is redemptive, that they don't want their

01:39:36.000 experience blunted or muted, or that they have such a commitment to a quote, natural experience,

01:39:42.900 or they have been a person that never took pharmaceutical medicines or drugs anyway, that this

01:39:48.720 could be a real diversion from how they've understood or been comfortable in relationship to medicines.

01:39:54.820 And I would say often there's a need for conversation in this space. At this point,

01:40:02.540 unless you're living with no access to media, everybody has some touchpoint reaction and bias

01:40:10.280 about these medicines. And so maybe it's not a long conversation, but it's a really important

01:40:15.580 conversation. And a lot of people are worried about addiction. People who are sober are wondering how

01:40:21.280 this impacts their sobriety. That's a super interesting thing I'd never thought about.

01:40:26.200 So you take an individual who's been sober and they're wondering, wait, can you really give me a

01:40:31.820 benzo? If you give me fentanyl and morphine, is that violating my sobriety? How do you answer that

01:40:37.220 question? I answer that question usually with more questions around their sobriety, what that experience

01:40:42.840 has been like, where they are with it now. Has it been important that there has been absolute

01:40:49.020 abstinence? It exists differently from different people.

01:40:52.940 Questions that sort of there, you might put in the camp of identity. Are they telling you? I mean,

01:40:57.520 I might say, from where I sit, Peter, there's no nobility in you suffering unnecessarily or being in pain

01:41:04.620 unnecessarily. You as a sober person, allowing me to prescribe you an opiate at this stage of your

01:41:11.720 life, to me personally, as your physician, poses no moral quandary to me at all. But what about you?

01:41:18.160 You're the person who's living in these shoes. And if you tell us absolutely no opiates or absolutely

01:41:24.680 no benzos, okay, we will listen to you. That may mean more pain than otherwise, but that's your

01:41:31.580 call. So to Bridget's point, to be back to more questions and not putting it on the patient.

01:41:36.400 And even saying, and by the way, Bob, you can change your mind anytime. Let's live with this

01:41:40.760 decision today. And if you wake up tomorrow and you want to change your mind, nothing's changed.

01:41:44.600 Exactly. But also, I'm not you, Bridget. I'm always knowing sort of the social clouds around

01:41:51.680 some of these issues. I will go out of my way to say, you're not going to get addicted to these

01:41:57.600 medicines. We're going to be using them judiciously. A lot of people, when they hear,

01:42:01.560 get the morphine, there's a phrase like, hang the morphine, sometimes is a euphemism for essentially

01:42:06.280 euthanizing a patient. It's not legal to do that anywhere. We're not going to kill you.

01:42:10.640 We're going to use only as much medicine as this helps your symptoms. Okay. So there's a lot of

01:42:14.980 room to clarify how we would use these medicines, what they mean and what they don't mean. So even

01:42:19.900 if someone doesn't ask me those things, I usually find an excuse to say those kinds of things.

01:42:25.240 I think we have to step back to, for a second, because we're using suffering.

01:42:29.940 And pain.

01:42:30.920 Yeah. We're using suffering in a little bit of like a, I would say, not correct way.

01:42:35.620 Because someone can have all of their symptoms pretty well managed and feel pretty comfortable

01:42:41.620 physiologically and have an extraordinary amount of suffering. So to say in 2025, nobody needs to

01:42:48.480 suffer at the end of life. Like, I think that's impossible.

01:42:51.620 Pain.

01:42:52.060 Yeah. For the most part, we can say, we will do everything we can to help you be as comfortable

01:42:58.300 as possible. Like, can we say we can do that perfectly? No. I mean, I guess that outside of the

01:43:03.160 sedation. Well, no, I think you're drawing, one of the things you're saying, Bridget, and I think

01:43:06.640 it's really important is there's a difference between pain and suffering.

01:43:09.340 So help me with that a little bit more. So pain, we understand. I think we understand

01:43:13.100 shortness of breath and things of that nature.

01:43:15.980 Sure. Nausea.

01:43:16.280 Yep. Exactly.

01:43:16.900 Domiting.

01:43:17.320 So let's bracket that those can all be managed physiologically and we have done so pharmacologically.

01:43:24.060 Yeah.

01:43:24.820 Now talk about the residual of suffering. How much of this is sadness? How much of this is grief?

01:43:31.200 Tell me more about what the suffering is once you've addressed those receptor bound physiologic

01:43:37.720 things. Yeah. I mean, it's one of the reasons why precise nuanced symptom management is so

01:43:44.860 important because it's when the noise and the volume of the pain often is turned down that we get

01:43:52.560 to learn about the stories someone is telling or the things that are replaying in their heads about

01:43:58.680 not getting to see their kids grow up or not getting to finish that piece of work that felt so important

01:44:03.860 to them or the ways in which they wish they hadn't taken something for granted. When symptoms are allowed,

01:44:11.560 it is really hard to get into the places of suffering that are about incompleteness. They're about

01:44:21.960 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

01:44:29.560 spiritually, existentially around faith and relationship to God potentially or what that

01:44:35.360 is for you and if that has stayed whole in this experience of illness, right? So there's just so much

01:44:42.540 turning the volume down on some of the physical stuff really can open up the space to move your

01:44:50.360 nauseous. You're not going to tell me how you're feeling other than the nausea.

01:44:53.640 It's the only thing going. I mean, in some ways, like a lot of misconceptions around our work,

01:44:58.280 as we've said time and again, one of them is that it's just about symptom management,

01:45:01.980 that we're symptomatologists essentially. And that's really importantly wrong. It's sort of hyper

01:45:07.140 reductive. And as Bridget's saying, in some ways, the first thing to do is turn down the symptoms

01:45:12.780 to the degree possible so that the rest of you is present. That's the starting line. It's once we

01:45:18.500 get you comfortable enough so you can think about anything but your pain or your nausea. That's when

01:45:23.080 the real work begins of getting to know you and evincing your fears and your hopes and your dreams.

01:45:28.240 And that's the stuff, that's really the meaty stuff that we want to get to. And so comfort is a

01:45:34.040 starting point in a way. And just maybe to back up a little bit first. So what do we mean when we

01:45:39.500 say the word suffering? For me, pain is a stimulus. There's safety to it. It tells us to stop doing

01:45:45.040 what we're doing. There's this sensation. It's complicated. The pain pathway is not a simple

01:45:48.900 one. There's not a pain pathway. It always involves emotion, always involves cognitive stuff. It's just

01:45:53.580 a matter of degree. But that degree is, so when we tip into something where your pain or other

01:45:59.260 symptoms are causing a threat to your identity, a threat to your sense of self, a threat to what you

01:46:05.320 see as real in the world, that's when we get into suffering. So suffering is a mosaic of physical,

01:46:12.680 emotional, spiritual, existential, the whole panoply of the human experience goes into suffering. So

01:46:20.760 someone may have inordinate pain, but if they believe that that pain is redemptive, it's going to

01:46:26.640 bring them closer to God or is burning off some bad karma, they're not suffering.

01:46:31.560 They might be very uncomfortable.

01:46:32.700 They might be extremely uncomfortable, but they're not suffering. It's not threatening their sense of

01:46:37.240 self in the world. And someone might have a very, what looks to be a mild cause of pain,

01:46:42.340 but be suffering extraordinarily because that has undone their sense of being. It's a really different

01:46:49.400 notion. It's not just the sort of physiological signaling cue. Does that make sense?

01:46:54.960 Completely. Yeah. So let's not mix those terms. Yeah.

01:46:59.040 I want to pivot a little bit to talk about how to pull all of this together, right? You guys have

01:47:03.660 had decades of being at the bedside for experiences that I'm sure you look back upon and think

01:47:11.260 that was really a wonderful experience. That patient passed out of this world and their family

01:47:16.420 escorted them out in the best way I can imagine. And I'm sure you have seen the opposite.

01:47:20.520 I'm sure you have seen things that made you cry and made you think I weep for all parties involved.

01:47:28.760 What are some lessons we can take away from that? What are, I hate to call it do's and don'ts because

01:47:34.340 that's such a stupid, but you know what I mean? What are some of the things that have in the process,

01:47:40.080 we'll come back and we'll talk about insights that you've learned from the dying. Cause that's

01:47:44.620 where I want to end it today. But just from the process of the dying and their loved ones,

01:47:52.120 tell me things you've learned that people should know that increase the probability of it being

01:47:57.060 as positive as it can be versus the opposite.

01:48:00.740 Well, it's a toughie. It's a toughie. As we said, this subject just really thwarts much objectivity

01:48:08.220 or anything that smells reductive. And in some ways, that's the death that we are as practitioners

01:48:14.020 are heading for is something that allows for, while we talk about a body or a person in decline,

01:48:21.160 that's our medical bias towards the physiology and the bodily. It's also very possible that people

01:48:26.740 can have be having this incredible emotional and social and spiritual growth, even as their body

01:48:32.740 is in decline. So part of it is our naming and overcoming the biases we're born into in this

01:48:39.600 particular culture, in this particular world. One answer to your question is, it's so hard to answer,

01:48:45.820 but for me, for me, these days, the word honesty comes up for me a lot. So the bullshit,

01:48:56.740 that we tell ourselves, the partial truths that we tell ourselves, the pieces of ourselves that we

01:49:01.820 don't look at, that we don't allow in because we're either ashamed of or whatever it is, or blind

01:49:06.880 spots, or we've bitten the sort of autonomy independence thing so much that we don't let

01:49:12.340 any social reflection in. Dying can be is this sort of great accounting. It all has, it's all coming

01:49:18.260 out in the wash there. So one thing that I see make a difference and head towards the do's and

01:49:24.560 don'ts, if each of us can take into our, perhaps our responsibility, but also our privilege to

01:49:31.060 know ourselves over time and to dare to look and to see and to be true to ourselves. My way of

01:49:37.600 thinking, if you asked me this question five years ago, I probably would have said something different,

01:49:40.020 but that's my big takeaway these days is if you want to be ready to die well, get real with yourself

01:49:45.760 the sooner the better. Because one of the things you'll allow in is a richer life. And one of the

01:49:53.080 reasons why we would encourage people to think about death earlier in life is not just to avoid

01:49:57.920 the defaults of a medical system that doesn't think about these things, but you also allow in

01:50:04.500 the idea that both your bigness and your smallness, I'm one of a zillion people who's ever lived,

01:50:11.540 I'm a drop in the ocean, but also allow in that the ocean would be different without my drop in it.

01:50:18.060 That work of placing yourself in the world and feeling in right size to it all requires a lot

01:50:25.520 of dynamic honesty. And that takes effort. You need to dare to look at yourself. And that to me is

01:50:32.700 sort of a big do. If you do that well, so much of what we've talked about today is it's not the

01:50:38.620 problem of dying so much, but the difficulties of uncertainty is so much of what we're guarding

01:50:44.320 against or working with. Not so much death, but living with uncertainty. And that's something

01:50:48.540 that we all do all the time. So my answer to all that is get real with yourself and be as honest

01:50:54.280 as you can one moment to the next and allow yourself to move and change with reality.

01:50:58.900 That's a mouthful, but that's as close as I can come to a do. Sorry, does that light up at anything?

01:51:05.000 That's actually really a profound one because on the one hand, it seems so easy is maybe not the

01:51:11.740 right word, so self-evident, but on the other hand, it's so difficult. And it's something that

01:51:17.040 anybody with a modicum of introspection struggles with. Yeah. And even when you think you've got it,

01:51:23.440 oh, now I know who I am. No, as relational beings, whatever's coming tomorrow might yank all sorts of

01:51:29.300 other things out of you that you didn't know were there. So the sense of self, this identity thing is

01:51:33.680 a biggie. I guess this feels connected, but the word for me, when I think about those

01:51:41.500 beautiful experiences or the ones where I walk away, just feeling like, not bad. I'd be okay with

01:51:48.780 that is about connection. And what does that mean? Like whether you are the person who's dying, like

01:51:55.480 your ability to connect to self, to the environment, to the people around you, if there are other people

01:52:01.040 there, if you're a person around supporting, like, can you be connected and in contact with what's

01:52:07.680 happening? When there's a lot of connection or connectivity in this time, the circumstances

01:52:14.100 matter, but a lot of different circumstances, a lot of different storylines can actually feel

01:52:20.580 quite alivening or even nourishing or validating because it is being in touch with what is real.

01:52:30.280 How many patients are permitted that medically? In other words, isn't that in part constraint by

01:52:40.060 their symptoms and the medications that are needed to, again, either sedate or control pain? And then

01:52:48.300 we talked earlier about delirium, like what fraction of patients that you experience in the final days and

01:52:55.540 weeks of life have the ability to be in that state?

01:53:00.240 That's a tricky question, but I think many, if the state is any level of connection to what's

01:53:07.980 happening, I'm not talking about moving towards totally conscious death or something. I'm saying

01:53:12.920 even in delirious states, there can be moments where there's just like real connectivity. Maybe we don't

01:53:19.040 understand cognitively totally what's happening, but your kid is sitting there telling you stories

01:53:25.220 about the things that were important to them and their experience of you, or there's some sensation

01:53:30.780 in your hand that's receiving input from your spouse or the light. We just don't know what that

01:53:37.500 experience is. So if we work towards environments and a focus on promoting the idea of connection,

01:53:46.720 I guess I just really believe that that translates regardless of mental status or like mental

01:53:53.340 clarity. And I think you said something earlier, most people, three weeks, there's probably delirium.

01:53:58.920 I don't know that I think that's true.

01:54:01.540 You're the expert, not me.

01:54:02.460 Yeah. I don't think it's most. I think-

01:54:04.460 Days before you may be-

01:54:06.180 Days, obviously so common, but I think there's opportunity for connection the whole time.

01:54:12.960 Especially if you include to yourself and to other parts yourself, then for sure. And especially

01:54:19.000 if also once you include inanimate objects and non-human things. I mean, I have some of the

01:54:23.660 most connected experience of my life have been with dogs. So once you broaden the scope of what

01:54:28.520 you can connect to, I think Bridget's points are really well-placed. You may also allow surprising

01:54:34.420 to feel connection to a perfect stranger has happened to me. I felt like my life has been saved by

01:54:39.040 strangers many times one way or another. Say more? I'm just despondent about, especially earlier

01:54:44.160 days in these shoes, and just feeling so alone and so in pain or whatever it is, or just tired.

01:54:50.800 But the kindness of a person walking by, just a little bit of eye contact, a little wink.

01:54:55.620 Hey, I see you. You see me? Maybe they hold the door open, but just a little connectivity and just

01:55:00.520 the realization that it is an illusion to say you're alone. It can feel very real, but none of us is

01:55:06.680 actually alone. So as you head towards the cosmos, you are, there's room, this comes up with psychedelic

01:55:13.340 work. There's room to feel connected to all sorts of things you can't name, but you feel that

01:55:19.160 connection. How much have either of you followed the psilocybin work, Roland Griffith's work,

01:55:25.080 the end of life stuff? And what is your take on, again, notwithstanding the regulatory challenges of

01:55:30.320 that, what is your take on that literature and its efficacy?

01:55:33.060 I think anecdotally, I have seen psychedelic experiences be incredibly helpful to folks that

01:55:42.420 have run into a place in themselves where they've just hit a wall in their own imagination and their

01:55:49.440 own mind as to what this experience is or what it can be. That there's just this opening that can

01:55:55.480 happen, sometimes incredibly subtly, that allows for just some slightly different insight not generated,

01:56:02.960 by the brain that you know so well or the parts of your brain that know so well. And I think it can

01:56:09.060 be amazing.

01:56:11.660 Super helpful. I mean, I'm really, in my own experience and those people I've worked with,

01:56:16.580 it's easy to start feeling evangelical. Like we should just be putting psilocybin and other

01:56:20.520 psychedelics in the water. And let's be careful. I mean, I think we're going to want to learn from

01:56:25.680 reality as we begin to do more of this work and study. And let's be true to what we learn.

01:56:30.560 But on the whole, these substances, these medicines have been able to achieve in a session with a

01:56:37.520 patient what months or years of talk therapy or other things haven't accomplished. And it's not

01:56:43.020 necessarily about learning something in those experiences. It can be. From my time with it,

01:56:48.300 it's more that I get past my thoughts and I get into this embodied felt thing. It's not an epiphany.

01:56:55.140 It's just, I feel the power of that epiphany or that idea in my bones, in my flesh. It's a different

01:57:02.020 kind of knowing, which then allows for a super sense of connectivity. You can't be disconnected.

01:57:08.460 That's just, you are connected and you feel that and the therapy of that. Also, you get to see how

01:57:16.220 silly our minds can be. And you just learn that very simple bumper sticker truth of don't believe

01:57:21.780 everything you think. You can come out of there with a new relationship to how you hold your thoughts.

01:57:26.640 And people get to that by other means, through meditation, through prayer, through deep transcendent

01:57:32.820 communal experiences. It's accessible by way of other avenues.

01:57:39.560 So you've obviously spent a lot of time with people in, by definition, the final stage of their life.

01:57:46.140 What have you learned? What have you learned that changes the way you live your life or the way

01:57:52.020 you want to live your life? Well, I can say something. Again, huge, beautiful questions you

01:58:00.420 asked Peter. I mean, but one is, and maybe this is some relief for your audience. I think many of us

01:58:05.980 would say we'd love to be fearless and love to go into our death unafraid or live a life so conscious

01:58:12.700 that we have no regrets. And my patients have taught me to undo those strangleholds a little

01:58:18.020 bit. It's more the truth that I've learned from folks at the end is change your relationship to

01:58:24.360 fear, your relationship to regret. The mark of living with no regrets, there may be something

01:58:29.560 for you in that. But I'm not sure how, if you're being really honest with yourself, how possible that

01:58:33.960 is. The lesson has something to do with coming around to accepting everything that's in you,

01:58:39.120 including the gnarly stuff like regret and fear and even suffering.

01:58:43.480 Are there certain regrets that people have shared with you more often than others?

01:58:49.020 The common thread, whether it's I regret working too much, didn't tell my kids I love them,

01:58:54.420 the standard regret menu, what they all seem to have in common is they regret not letting themselves

01:59:01.840 feel or not letting themselves be true to what they actually felt. Something got in their shame or

01:59:07.820 something else wedged in themselves and separated themselves from themselves or separated themselves

01:59:13.460 from other people they love. And the regret has something to do about artificially or accidentally

01:59:18.900 putting a wedge between you and anything. You could spend a lifetime running from fear.

01:59:24.760 I've watched a lot of people come around to when they finally got the cue that fear was just a natural

01:59:29.440 part of being in a body. They became okay with fear. They took away that secondary shaming of fear.

01:59:35.300 And then fear became this, it was sort of right-sized to them and it was defanged. I've seen that play

01:59:40.800 out a lot. The same with regret. The commonality, back to your question, has something to do with not

01:59:45.720 being quite true to themselves or trying to keep something out of their experience and all the work

01:59:51.520 they did. And when they come to realize that it's all got to go anyway, welcome even pain. To feel

01:59:57.260 anything is wild and magical. Do people need to be really close to the end to typically come to that

02:00:05.180 near inevitable realization? Or is that something people are realizing six months out where they can

02:00:11.200 do something about it, where they still have all their faculties and they can still mend a bridge or

02:00:18.580 mend a relationship? Yeah, absolutely. That can happen anytime. Back to kids,

02:00:23.220 they're not gumming their own works up. They can do that. So yes, we can do this. We can learn to do

02:00:28.620 this. And so another reason why we would invite this subject into our daily lives. If you look out

02:00:33.280 your window, death and life are happening all the time. You see it on your windshield. It's all over

02:00:37.480 the place. If you can really be aware, let these messages in, then you can let the lessons in too

02:00:43.840 towards reconciliation or why hold a grudge? Why would you ever cause suffering in another person

02:00:50.200 unknowingly and yourself included, et cetera? So yeah, Buddhism was sort of founded around this

02:00:55.980 question. And to give you a life of practice around meditation, how do you hold your mind so

02:01:00.160 that you don't suffer unnecessarily so that you can be okay with the fact of your death? There are

02:01:05.680 scholarship, bodies of thought, and just your own personal experience of living daily life.

02:01:10.140 If you let it in, you can gain these lessons anytime along the way of life.

02:01:15.820 If I think about my own learning, you can't, I don't think, really hang out in this space a lot

02:01:23.040 and not really wrestle with the reality that we don't know when we're going to die,

02:01:28.260 which means that this is my life. I've got two young kids, so regular, I'm kind of like,

02:01:33.360 okay, this is my life. This is my life. Just as like a management strategy. But I think there's also

02:01:37.820 like a tether to the reality that this moment is what I have. It is not, it may start to sound

02:01:44.460 trait, but it is not tomorrow is not promised to me. 10 years is not promised to me. And if that is

02:01:48.900 true, can I use that as this reminder, this moment, the way that I speak to you, being tender when I do

02:01:59.020 things out of my value system, right? Staying really connected to now is the invitation that

02:02:05.400 comes next to or has come for me in being so aware of mortality. You do not have to be sick.

02:02:12.140 You do not have to be facing the end of your life. No one in your life has to be dying right now

02:02:16.800 to just take pause and be like, this is my life, this moment, and then the next. Do I remember that

02:02:22.620 all the time? Absolutely not. But it is a very available reminder. Yeah. I intentionally stay

02:02:30.540 connected to it. I intentionally make it something my kids can be connected to because it's inarguable.

02:02:37.400 We can have three different takes on everything that we've said today, but it is inarguable that

02:02:42.760 we are always living in the reality that we don't know when we're going to die.

02:02:47.860 Yeah. Amen, sister. And I think that gets back to sort of the do's and don'ts. Do have a relationship

02:02:52.920 with mystery, with not knowing. Do have a relationship with the present moment. Those are some pretty good

02:02:59.320 do's.

02:03:00.040 What I'm saying is not light or easy. It doesn't make me not afraid. I feel very aware of how much

02:03:07.060 I want to be alive and how long I hope my life is. And also humbled by the fact that like what I

02:03:13.460 have influence over and control over really inarguably is right now.

02:03:18.100 And I hear you not being ashamed of your fear, and that's the difference. I think a lot of people

02:03:23.000 would be afraid. And then what they're really experiencing is the shame of being fearful.

02:03:26.940 I'm very terrified every time I get on a plane.

02:03:30.080 Yeah. And I think also sort of dovetailing too is this word control comes up a lot. It's a big one.

02:03:38.240 And I think in terms of if we're going to remotely dispense any advice, the serenity prayer,

02:03:44.380 it comes up a lot one way or another. I think a lot of your listeners will know this,

02:03:48.680 the ability to discern what you can control and focus some efforts there and let go of all the

02:03:54.560 things you can't control.

02:03:55.440 And maybe in the middle, identify that even though there are some huge things we can't

02:04:00.720 control, there is a lot we can influence. Those are different. And that there's that spectrum

02:04:06.220 between control, influence, and like surrender. And how do we build our flexibility?

02:04:11.600 Well, and how do you learn to sit with? I think that message of the serenity prayer,

02:04:17.080 often I hear people, myself included in the past, some friends take that wisdom of that message and say,

02:04:22.540 okay, I'm just going to focus my attention on what I can control. And then they have a lifetime of

02:04:27.860 focusing their line of sight in one direction. I think what we let go of is the other half of that

02:04:34.720 message, which is not, oh, don't give a shit about it because you can't control it. Learn, sit with all

02:04:39.980 that you can't control. Practice not being in control. That will serve you very well as you head to your

02:04:45.300 death. What about the role of forgiveness? How often do you encounter the dying who are wrestling

02:04:55.160 with needing the forgiveness of someone or needing to forgive someone?

02:05:03.000 It's a big theme. It's written about a fair amount. The things to kind of focus on saying out loud,

02:05:08.780 I love you is I forgive you. Please forgive me. Thank you. Thank you. These are tried and true

02:05:14.620 messages that seem to cut across culture and stand up pretty well. Back to your specific question about

02:05:22.220 forgiveness. I don't know how often, I guess I would say more commonly, what I see people needing to

02:05:28.820 learn how to do is forgive themselves, picking something in sort of common. I see that a lot.

02:05:35.460 How do you encounter it? Being at odds with themselves. When there is no boogeyman,

02:05:41.240 there is no, they're just not comfortable with themselves. They're at odds with themselves.

02:05:45.780 Self-loathing, self-critical. Even in the final weeks of life?

02:05:50.480 Some. We have a bias. There's a bias. All the people we've seen have had the benefit of hospice and

02:05:55.940 palliative care involved. So they've been loved on. They've been heard. There's an inborn bias to our

02:06:01.320 experiences. I don't know. I don't know if I have like a good answer about the forgiveness piece. I

02:06:06.960 think, I think it comes up. I don't know that I think it comes up a lot. I don't know.

02:06:13.480 Yeah. Again, I think that might be the bias of people that you've spent time with over time.

02:06:19.000 Those things have gotten to, there's no need for a deathbed.

02:06:21.540 There's not a lot of truisms in this space that I generally vibe with, and I'm pretty allergic to

02:06:28.040 most of them. But I will say that I do think there's something to like, people die the way

02:06:33.060 that they live.

02:06:34.040 Those who lived in love die surrounded by love kind of thing.

02:06:38.360 Yeah, that or if you had a lot of people around you, maybe there's going to be more people around

02:06:42.920 you. If you're a person that dug into your life and really investigated your mind and you did that

02:06:48.020 relationally and you shared your reflections and like, that's also more likely to happen when

02:06:53.160 you're dying. So if there's an experience you would like to happen, if you're imagining into

02:06:58.840 the future, you're like, I think dying in this way would be okay or more tolerable or nice or

02:07:04.060 beautiful. Start doing it now. You're worried about forgiveness? Investigate that now. You want to feel

02:07:09.880 more connected? How do you do that? You want to be in your body more? How do you do that?

02:07:14.180 That's the best way to get there at the end is that you're building those muscles now. I mean,

02:07:20.940 some people do 180s with a big diagnosis or the awareness that they're dying, but

02:07:26.280 mostly we lean on the places that we have hyperdeveloped because they're comforting,

02:07:32.480 because they're familiar in the face of this vast thing.

02:07:37.460 I mean, that might be the single most important insight of them all, which is we die how we live,

02:07:45.060 and we will, what's the expression? We rise to the level of our training. In sports, we talk about

02:07:51.860 that. At fatigue, you rise to the level of your training. And so we will default to our regular

02:07:57.660 strategies. The strategies that got us through life are probably the strategies that will get us

02:08:02.280 through death. And so what we should all be doing is imagining the death we want and begin

02:08:07.600 practicing that at life and make that our scaffolding today.

02:08:12.980 I think it's about as good as advice as I can imagine, especially if you throw in the caveat

02:08:17.060 that along the way, learn to deal with things when they don't go as planned so that you don't have

02:08:22.640 this sense of failure at the end. I mean, one of the saddest things I think we see is people who feel

02:08:27.120 like they're failing at dying. So I don't want to set it up as an accomplishment per se or an

02:08:32.660 achievement per se. But your advice sounds really good to me.

02:08:37.020 Right. Like we can't control for the outcome with certainty, but we can build the muscles

02:08:42.820 and the capacities that are going to help us land in that place. If you're a person who builds new

02:08:49.900 coping skills or new ways of being in like high stress adversity, like you'll probably do that

02:08:55.960 then.

02:08:57.460 Just keep going on. You said it feels like a throwaway line. When do we begin dying?

02:09:02.760 You don't become a different person when you're dying. You're still going to be Peter. You're

02:09:06.920 going to still be Bridget. I'm going to still be BJ. And that has already begun. That active dying,

02:09:12.100 we never finished answering that question. What goes in that? The final day or two when

02:09:16.060 the body's really shutting down. So active dying has its own frame and we can revisit

02:09:21.000 that any old time. But everything up to that is some form of living. So you can begin practicing

02:09:28.160 this dying thing today.

02:09:30.920 Well, let's talk about that final thing. What does that last 24 to 48 hours look like?

02:09:35.420 So the phrase we use is active dying to distinguish it from the rest of living dying thing. And a

02:09:42.060 body is actively shutting down. So system by system, you'll stop, your kidneys will shut

02:09:47.720 down. You're not making as much urine in part because you stopped drinking probably a few

02:09:52.060 days ago because your body couldn't handle the fluids. So thanks to kidney shutting down,

02:09:56.660 you get a buildup of toxic metabolites and you get a little intoxicated, a little dreamy.

02:10:01.660 That may be the mechanism of your delirium. So you're not eating, you're not drinking as a

02:10:07.120 general rule. You're probably a little fuzzy or entirely asleep. Breathing, the two biggies,

02:10:12.560 those can happen anywhere along the way. But the ones that tell you you're really close are when

02:10:16.300 you have modeling of the skin, a sort of lacy, bluish experience where your body's just not moving

02:10:20.980 blood effectively. And you'll see skin changes, especially at the extremities.

02:10:26.560 And breathing patterns change. Oftentimes you get apneic, so long periods of no breath at all.

02:10:33.520 You often hear something that's, it's like a frightful phrase, but the death rattle,

02:10:37.920 which often is sort of a gurgling sound with breathing. That's just because your oropharynx is

02:10:42.840 no longer, the reflexes are dying out. So you're no longer moving fluids as they pull in the back of

02:10:47.780 your throat, which is an important note there. If your reflexes are no longer functioning, you're not

02:10:53.860 likely feeling it. So a death rattle sounds pretty gnarly, but it's generally probably harder for the

02:10:59.240 audience and the person dying. But those are the things that are typically experienced in a body

02:11:04.100 that's actively dying. And that's only going to last a matter of days.

02:11:08.340 At most, hours to a day or two.

02:11:10.720 I think the other thing that's happening is the experience for the people around that person.

02:11:16.480 And there's so much to say in that space, but I do think having counseled a lot of people,

02:11:21.960 there's a feeling of preciousness. We don't know when that last breath is going to come.

02:11:27.360 Maybe we really want to be there. Maybe we feel like we can't. But often for someone watching

02:11:33.880 and waiting, it can be really hard to stay connected to our own experience. People won't

02:11:39.640 get up and go to the bathroom because they don't want to miss that moment. They don't eat. Maybe

02:11:43.940 their appetite is low anyways, which is fine. But it is a time to be thinking about really basic needs

02:11:50.720 and basic comforts for everyone in the space because that influences the space and the environment

02:11:58.080 for all. And most people feel like this is the dying person's experience. All of the focus is

02:12:03.100 there. We're watching every respiration. We're even matching their breathing. We're creating anxiety in

02:12:07.040 our own bodies because of that. And if we can invite attention to everyone's experience and give

02:12:12.800 permission to like, you need to take a walk, go take a walk. It may mean that they die when you're not in

02:12:18.680 the room. And maybe that's okay. Maybe they die in the one minute you're going to the bathroom for

02:12:25.440 the first time in six hours. It may just be that way.

02:12:30.260 That's a really, really important point. Once you understand delirium and so you can contextualize

02:12:35.420 what you're hearing from a loved one, that point Bridget is pointing to is such an important one. A lot

02:12:40.320 of loving families keep these vigils and don't sleep, don't do anything so that they can be there for

02:12:45.140 the death thinking that that's the most, that's the highest high. That's what it means to be there

02:12:48.920 when someone dies is in that exact moment when they take their last breath. And so to Bridget's

02:12:54.080 point, this is a lived experience for everyone. So you got to sleep. Yes. And I don't think any of

02:12:59.300 us could tell you why this is, but it is just a thing. You talk to anyone who worked in hospice for a

02:13:04.440 while. It seems to be that a lot of people need to be alone for the final moments on the planet to

02:13:11.460 really let go. I can't tell you why, but it is a thing. So you going to the bathroom or taking a

02:13:18.460 walk or stepping out of the room may be exactly the thing that that person needs to finally let go.

02:13:24.140 So the message is don't leave and therefore the person will never let go. You just potentially can

02:13:28.720 make it harder and harder for that person to actually finally let go. So go to the bathroom,

02:13:34.580 take a walk, kiss the person goodbye, drink some water and know that not only they may be gone when

02:13:40.200 you come back, but that may be exactly what they needed to finally let go. It's a hard one for

02:13:46.100 families to take in, but it's just a thing. Well, guys, thank you very much for this discussion today.

02:13:53.100 Very important, very difficult discussion. Not one we want to have. I imagine for you guys,

02:13:58.080 that's pretty common. You go to parties, nobody wants to ask you what you guys do.

02:14:02.400 Or they have got a great story that they feel is relevant.

02:14:04.940 Yeah. Yeah. But given how much of our time on this planet we spend heading towards the

02:14:09.860 inevitability, the one thing we will all be 100% successful at, it certainly warrants a discussion.

02:14:16.200 Yeah.

02:14:17.040 Amen, brother.

02:14:17.980 And more.

02:14:18.920 And multiple discussions, as we pointed out today. It's slippery. It's huge. It's a windy,

02:14:24.820 inherently messy conversation. So it's not just us struggling to articulate something as much as

02:14:30.960 we are articulating the messy, this inherent complexity of something.

02:14:34.800 Yeah.

02:14:35.060 Yeah.

02:14:35.660 Well, thank you guys.

02:14:36.500 Thank you.

02:14:37.340 Thank you, Peter.

02:14:37.920 Thank you for listening to this week's episode of The Drive. Head over to peteratiamd.com forward slash

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The Peter Attia Drive - June 23, 2025

#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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