The Nature of Suffering: BJ Miller and Naomi Saks

Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: We’re delighted to welcome back BJ Miller, who’s a palliative care doctor and co-founder of Mettle Health. We’ll have a link to that website for Mettle Health in the show notes associated with this podcast. BJ, welcome back to GeriPal.

BJ: Thank you, Alex. Good to see you. Thank you, Eric. Great to be with you guys.

Alex: And we also have Naomi Saks, who’s a palliative care chaplain and an assistant professor at UCSF. Naomi, welcome to the GeriPal podcast.

Naomi: Thank you. Great to be here.

Eric: Every once in a while we try to go over a very, very challenging subject on the GeriPal podcast. I can think of no more challenging subject than the nature of suffering. That’s what we’re going to be talking about today. We’re hoping for a quick answer of what it is, so this should be like a 30-second podcast, but before we jump into that, Naomi, I think you have a song request for Alex.

Naomi: Yes, I do. Everybody Hurts by REM.

Alex: And Naomi, why did you choose this?

Naomi: Well, it was one of five, but honestly, Alex chose it because he tried it in 2017, and he wanted another crack at it. [laughter]

Alex: That’s right.

Eric: Yeah. What was your number one? Did you have a number one?

Naomi: It was in there, my top 5.

Eric: It was in there. All right, so it wasn’t your choice. You just picked one of the five.

Alex: Yeah.

Eric: Okay.

Alex: So I was hoping to be able to play this on Guitar Live, but I still have a broken hand, so I’m going to play it on this keyboard I got yesterday. For those of you listening on the podcast, not watching on YouTube, my son Kai’s playing guitar on that one. All right. Here we go.

Eric: And Alex’s office will slowly be taken up by musical equipment. [laughter]

Alex: That’s correct. Mixers, podcasting equipment.

BJ: Wait. You both have sons named Kai?

Alex: Yes, we do.

Eric: We do.

BJ: I didn’t realize that. Okay, weirdos. Wonderful.

Eric: Mine is actually named after Kai Ryssdal, because every day I’d pick up my wife at 6:00 PM when Kai Ryssdal was on NPR. That’s such a Marin story, by the way. Named your kid after an NPR host.

Alex: A lot of Kais. My Kai is named after my dad. It’s a Hawaiian version of his name, Blake. Here’s a little bit of everybody hurts.

(singing)

BJ: That’s beautiful.

Eric: Naomi, I’m going to turn to you first. We were doing a vital talk thing with fellows, and we were chatting about potential GeriPal podcasts, and you mentioned doing one on suffering. Can I ask you what made you think about that?

Naomi: Yeah, and thanks so much for picking up on it. There’s so many of these big words, about the experience of human existence that we kind of talk about, especially in palliative care and geriatrics. We never have this really nice, intimate time to unpack them, and we also assume that we all are saying the same thing. The other thing is, I think a lot about suffering. I think I wouldn’t be here if I didn’t suffer in my life. I think that it’s very similar to a lot of people that we work with and a lot of people that are attracted to this work, is something caused them anguish, pain, or multiple things, and it brought them to this idea of how do we move with that, and how do we feel the pulse, rhythm, and movement of suffering? And so I just thought this is a great opportunity for all of us just to unpack it a little bit, see what we actually mean, and start thinking about it.

Alex: I love that. I mean, there’s so many big words that we use that are incredibly hard to define. I think even the words like disease, what do we mean by disease? What do we mean by health? If you actually try to unpack those words, you end up in a rabbit hole of philosophy, religion, and etymology. I think even the word patient, patient, I think, comes from the word suffer, the one who suffers. So maybe we can unpack a little bit about how each of you think about the word suffering. What is the nature of suffering? BJ, I’m going to turn to you first. How do you think about it?

BJ: Well, like you guys, I think about it a lot. I mean, it is the word, in the long definition of palliative care, whichever one you choose, it’s the fulcrum. No matter how you slice our field it, it seems to be the thing we’re all meant to be responding to.

Alex: The relief of suffering.

BJ: Yeah, yeah. And so, for me to make it personal, like Eric Cassell’s work, I guess that was in the eighties. That was what I learned in fellowship, as sort of the definition of suffering that the field was using and we oriented around it, and I know you shared some newer thinking from folks named Tate and Pearlman, around the nature of suffering. We can get into that, but personally for me, the way I’ve defined it, just to make it personal, is that suffering is a wedge or a gap that opens up in myself, and some space gets in between me and myself, or me and my life, or me and my reality, or something like that, and it seems to come down to, basically the wedge opens up around a gap or a delta between the world I have or the life I have and the world or life I wish I had.

That, I find helpful, because it also gives us two basic responses, which I think we will see together here, but I think they still hold, which is basically you have some version of accepting your reality, this sort of Buddhist contemplative approach, and essentially quit wishing for a life you don’t have and get into the life you do have, and so that’s one way to extinguish suffering. Another one would be to, of course, on the other end of the spectrum, a bit of change in your reality, change your life, change who you are to come into alignment with this reality thing. Changing ourselves, changing the world is pretty tricky. It seems to be the Western’s favorite approach though, the West’s favorite approach. I think we’re more interested in changing the world than accepting it as a rule, or at least that’s what I’ve absorbed, but I think most of us do a little bit of both. We change what we can. We accept what we can’t. A little bit like the serenity prayer. In my life, that general gist is more or less held up for myself and people I work with.

Alex: Well, Naomi, how would you describe suffering when you think about it for yourself?

Naomi: Yeah, and it is something that I pay a lot of attention to, because I know that I can only be as intimate with people suffering as I am with my own at any given moment, and so when I think about my own suffering, and again, I also like to always invite people to be the expert in their own experience with suffering. I think in medicine and especially with the Tate and Pearlman article that we read before this, and we lean towards suffering as a loss of sense of self, which is a real presumption that we all know what self is, which comes from a really powerful, very specific culture, autonomy driven idea that if we lose sense of self and we have negative feelings, then we suffer, and I think suffering, for a lot of people, it can be positive. It’s actually not a problem.

For some people, it’s purifying. For other people, it’s redemptive. For other people, it stretches them in ways they never could have understood, and other people, it opens them up to unity consciousness or a sense of self beyond their small thought-created identity. So I’d like to think that, but for me, I think about it more as a psychological, spiritual, existential suffering. That’s where I really hurt myself. That means I notice this pattern, that if I continually want to keep grasping, looking outside of myself, and looking for things that will make me happy from a sense of whatever it is, whatever my core thing is, whether it’s loneliness, whether it’s abandonment, whether it’s lack, it’s a continuous cycle of searching outside of myself for the happiness, the better, or what I like, and continually pushing away what I don’t like over and over and over again. It can be anything from simple boredom. “I don’t like this moment. I’d rather go to the refrigerator and get a brownie,” or whatever, to an excruciating fear of annihilation. So it can be the whole spectrum, but the cycle is the same.

Alex: That’s a big spectrum right there.

BJ: Mm-hmm.

Alex: I wonder when we talk about it, because we’ll have links to both Eric Cassell’s argument, and we mentioned another article from Tate. We’ll have links to that on our show notes. But I wonder, when I think about Eric Cassell’s argument, again, which we’ll have a link to, it is suffering is about the, what does he call it?

Eric: The loss of personhood.

Alex: The loss of personhood.

Eric: Yeah, the threat or injury to one’s person or the impending destruction of the person that perceives it, kind of like what BJ was talking about, kind of this gap that’s this hole that’s opening up in him. I always struggle with that, because I wonder, does suffering have to be so deep and meaningful always? So for example, Alex, you broke your hand, right?

Alex: I broke my hand.

Eric: You told me one night, every time you turned, you just felt like the two bones rubbing against each other causing excruciating pain.

Alex: Right, right.

Eric: Did Alex have to attach meaning to that? Did he have to attach this gaping hole that’s opening up inside him for him to suffer, or was he just suffering because it fricking hurt?

Alex: I’ll take this to a different level, which is acknowledging who’s on this podcast here, and that is this idea of relative suffering. I was talking with my wife about this last night, and she said, “What’s your podcast from tomorrow?”

I said, “Suffering. Well, what is suffering?” and I said, “Suffering, there are many aspects to suffering,” and I talked about Buddhism, in that in the Buddhist tradition, one of the central tenets is accepting the experience of suffering and the roots of suffering. I’m not a Buddhist, but I studied at Kopan Monastery, had a crash course there for a week, and did some meditation there. I said, “Every aspect of our daily lives is filled with suffering to some extent.”

She challenged me on that, and said, “You know what? My suffering is not the type of suffering I expect you to talk about in the GeriPal podcast, which is like end of life cancer pain. That is serious suffering.”

So there’s this element too, of what’s suffering in relationship to others, and can we compare? I have a broken hand. BJ has lost three appendages. I have a sense that my hand will recover, right? It will recover in a few weeks, and I will be back to doing my prior activities. The level of loss of personhood that I’m experiencing is nothing compared to the level that BJ must have experienced around the time of that profound loss. So there’s this, what is suffering to the individual, and is there some threshold that we could say, “This is real suffering,” or “This is the suffering we talk about in geriatrics or palliative care”? Does it have to be, as Eric Cassell talks about, to the level where your personhood itself is threatened, because my personhood isn’t threatened by having this broken hand, but BJ’s may have been.

BJ: I was going to jump in. Hopefully we’ll all just have batted around. I think so much trouble comes from comparing our sufferings. I mean, I have my own experience, as you point to Alex. Thank you. I mean, I appreciate how you’re putting that, and I also just look at my own life, and I’ve had these very big obvious losses, like you’re describing, and a zillion little ones that we all lost, car keys, lost whatever, all sorts of things I wish were otherwise. If I look at my own reaction to that spectrum, I don’t see much of a difference, actually, on some level. So there’s something about suffering that I think resists measurement in a classic sense, or certainly a quantitative sense.

More of the point is we get in big trouble with ourselves and with our patients and each other if we go down that comparison track too far, I think that we can cause some real trouble there. So one response is to just drop the comparison, own your own experience. Breaking your hand sucks, and it may not threaten your personhood per se. That seems like such a huge word, but it certainly must most likely affecting your daily life in some level that’s kind of turning you a little bit upside down, more than just the logistics of working with one hand. I don’t know. I don’t mean to project into your experience, but it’s on a spectrum, and I think we’re all on that spectrum. It doesn’t pay to locate ourselves in comparison where we are on that spectrum, one person to the next, is my sense.

Eric: It seems like it’s all, I mean, it’s about the story. If Alex was trying to be a professional pianist, and he has a recital that could elevate him to the next step of being a professional pianist, but now he broke his hand, that would be a very different case than he’s a palliative care clinician and a researcher who doesn’t really need his left hand.

Alex: Right. For those of you who watched me play piano on YouTube, you’ll know that this is an entirely fictitious story, that I’m about as far from being a professional pianist as one could be. Naomi, your thoughts on this? I mean, to me, the Buddhist concept that there are multiple forms of suffering, like there’s the suffering that’s due to pain and physical symptoms. There’s existential suffering. There’s suffering from growing old and loss, and that we have to let go of our attachment to the things that lead us to suffering and find a new contentment within ourselves. Paraphrasing a lot here. Your thoughts about the nature of suffering, that appeals to me more than, “Suffering is only the loss of personhood,” that Eric Cassell talked about, though that article did inspire me in part to go into palliative care.

Naomi: Yeah. I agree, And also agree with what BJ said. First of all, comparing suffering, it doesn’t get us very far, and I don’t think it’s the source of suffering that’s the difference. I’ve had a patient in one room, they have stage four breast cancer. They have their room filled with flowers and hearts, paper hearts on the wall, and they are so grateful for this next breath and this next moment. They have a beautiful, fuzzy, hot pink blanket around them, and they can’t wait until the nurse comes in, because they think she’s so adorable and amazing. I’ve been to the next room, stage four breast cancer, and the person is saying, “Why is this happening to me? This shouldn’t be happening. The pain is excruciating. They never come in here when I need them, and I really can’t take it anymore, and I can’t handle this.” So I don’t think it’s the suffering at all, the actual suffering.

It’s what we do with it, and I do actually think we have to be really careful to give everybody suffering its dignity and never name somebody suffering for them. It’s really important. If you’ve ever heard any of our colleagues use suffering to manipulate people, it really is hard for us to take. So for instance, when we see somebody who we think is at the last few days of their life, and maybe they can’t speak. They’re sedated, they’re intubated. There’s some atrophy that’s happening. There’s inflammation. They’re starting to decompose even in the toes and fingers, and we’ll sit there and tell their family, we think they’re suffering, because we are suffering watching them, and we want them to make a decision that’ll make us feel better and take the suffering away as quickly as possible. The more we can notice that, the more we can actually be present for that family and actually see how they’re experiencing it. Suffering might not even be in their lexicon.

Most people don’t use the jargon of suffering. They say, “I think he’s in pain.” They say, “Do you think he can talk to me?” They say all these things, but rarely is it this very specific idea of suffering. When they do ask us if they’re suffering, if their loved one’s suffering, that’s really a great time for us to really listen closely and say, “Do you think they’re suffering? Tell us more about what you mean,” because they give us beautiful information from that. I think there is a difference, too, between physical suffering, and we have to also give that its dignity. If somebody is in terrible pain, we are not going to go say, “You know what? I really think it’s because you’re not accepting reality right now, and if you only would just take away the story of the pain, you’d feel a lot better.” We don’t do that to people, so we have to be really careful, and we be a guest in people suffering. We let them lead us and show us where it’s going.

Eric: And that’s because-

Alex: I so agree with that. Sorry, Eric.

Eric: Oh. Go ahead. Go ahead.

BJ: Sorry. I just so agree with what you’re saying, Naomi, and I think that is a way to subvert the impulse to compare, measure, or save whether someone’s suffered enough. If you get into their worldview, if you visit their world with them, they’ll tell you everything you need to know. You don’t need this external gauge to tell yay or nay on the suffering. Anyway, so thanks for giving us that sort of a mechanism, a way out of the comparison snafu.

Eric: Well, I guess one question is, is there an external gauge? I hear that suffering, it depends on the person. It’s the relationships to the world. It’s how they assign meaning to it. It’s what does, for example, the broken hand mean to someone, to their future, to all of this stuff. But when you have somebody in the ICU who’s dying, they may look like they’re having pain, can we assign, “Yes, they’re suffering,” or do we just say, “No. It really depends on the person, their relationship, what’s going on.”

BJ: Well, I fall back on using physiology in the sort of medical sense. If I’m in that situation with a patient or family, and that person can’t say it for themselves, I fall back on what I was trained, that there are proxies for suffering, and we probably just mean pain, but the grimace, labor breathing, fidgetiness, or this poor thing, just gut sense, especially from people who know the person well, that’s what I’ve used at the bedside in response to your question, but it doesn’t give it an answer to your question.

That’s just been the sort of useful proxies to say to families, but back to Naomi’s point, “Hey, I think we’re causing suffering here. I think we need to change things,” you don’t want to cause your loved one suffering, right? Family member, and with some chagrin-

Eric: Powerful nudge.

BJ: It is, and I’ve used it many times, and I don’t have anything else, especially with a noncommunicative patient, to say whether they’re suffering. I’ve fallen back on that very reductive notion.

Alex: I think the other point that Naomi raises, that needs attending to, it’s very important, is that the doctors, the nurses, I hear most from the nurses, saying that they’re worried the patient’s suffering, and also from the house staff, and that we also have a duty to attend to that emotional experience, response, and observation, and what are you seeing that’s making you say that? Sometimes when I am in that situation and I explain to the nurses, the house staff that this kind of treatment is actually concordant with what the patient was hoping for, right? A shot, even if it’s a really slim shot, and even if they had to go through a huge amount of intensive life sustaining treatment to get there, and that helps relieve that distress that those nurses and those more junior trainees are experiencing, at the same time, I have to say that I love it when nurses join family meetings, and we turn to them and say, “You are with the patient more than I am, certainly, and maybe as much or as more than family members. What are you seeing?”

Then, the nurse says, “I’m worried that this person is suffering.”

Then, we could say, “Well, what makes you say that?” That is also very powerful in family meetings, in just surrogates, loved ones hearing that story and that word used, so I think that there are many parts in unpacking this. Naomi?

Naomi: Yeah. I agree. And I love this question, because we are there for each other, and we actually really do. There’s so many multiple layers of suffering, and so much of our work is actually tending to colleagues suffering in our own. I think there is definitely a place, especially physical. We have to be honest. We’re mostly talking about physical suffering and nonverbal cues of physical suffering. We can’t make up stuff and pretend like we really know when that sedated person, are they suffering inside? I think we have to be really careful about that. We let other people, we let their family, we let them be the expert in that, but let’s say our colleagues, nurses, doctors, others say, “I think this person’s suffering.” That is such a great invitation.

Say, “tell me more. What makes you think they’re suffering?” And it’s usually physical, and I absolutely think we have a role of saying, “In my experience,” that’s beautiful shared decision making, right? To say that, “I’ve seen about 300 or 400 people in this same condition. What I notice is they grimace, they clench their fist. I see that he’s groaning. My sense is that he’s in pain, and I think he’s suffering from that, and I think there’s something we could do about that.” That’s quite different than using suffering as a tool to manipulate a goals of care conversation to push someone into a decision that we want them to be.

Eric: Well, I guess Naomi or BJ, when you think about that, when somebody does say, “I think he is suffering,” how much of that should we see as a reflection, “Oh. That person who said that is actually the person that is suffering. They have that gate.” They have that threat to self that Eric Cassell was talking about, because in some ways it’s a threat to, let’s say, who they are as a doctor or as a nurse. This is not why I went into this field to do this, and how much do you explore that with them?

Naomi: Just as a chaplain and as a human, but as a chaplain, this is definitely waters that I mostly swim in all day long. And I do think that, like I said, there’s a place for really supporting people when they think that there’s physical suffering and they need to name it, and that’s part of their integrity as a clinician. Then, I never let the other part go, which is, “Where are they suffering?” Then, I just do a light touch where I really ask them, “So this is hooked to you. How are you doing with this?” I was in the ICU the other day, and there was an attending, and she was really encouraging DNRDNI from a very religious family that actually really believed that that was against their value, that they were supposed to try anything possible, and every intervention was God’s method of healing. I could feel a pushing and pushing.

And so I talked to her later and just said, “God, that seemed really hard. What was that like for you?”

She said, “I cannot see my team go through another code again, and I will not do it.”

Then, we had a moment, like she softened, right? She softened to her suffering, and she trusted me enough to have a moment, that she could look into that and see that, yes, she had her clinical judgment, which was fine, but also that there was another processes going on, which was her own suffering.

Eric: BJ?

BJ: Yeah. That’s beautiful, Naomi. I’m just going to second, essentially, what you’re describing. I mean, one is the brilliance of your question, when suffering comes up, to asking people to tell you more. So if it’s the bedside nurse, house staff, or whoever it is, your senior colleague, for that matter, just inquiring, but what are they seeing? Usually events open up some insight into the person themselves as they’re describing the suffering. Then, to your point, Naomi, whether in that moment, oftentimes in the situations I’ve been in, it might be a private moment without the team watching or family watching, I might go check in with that nurse or the other doctor, whatever, on the side and just do something of what you just described, kind of get into their experience a little bit.

Between those two things, usually you get all the information you need. Then, there’s developing your own sort of judgment and pattern recognition, and checking in your own gut sense. How are you hearing these folks? How is it landing with you? And so I think a third piece of this in inquisition, inquiry. Inquisition, wrong word. Inquiry would be to check your own gut. How are you hearing what you’re hearing, and what’s going on for you? Between those three surveys, it’s pretty effective at getting to some version of a shared truth under there, and therefore some next step of action.

Alex: I love one of the things that you said earlier, BJ, about how one of the tasks, one of the things you help people with is to help them let go of the self that they perceived themselves at that loss, that person they no longer are or no longer will be, and helping them to live as they are now, who they are now in this moment, and I wonder if you could talk a bit about that process of how you help people through that shift in focus.

BJ: Yeah. I think at the high level, if there’s a sort of a template or a flow chart of any kind, it would be naming it, finding some way to name this loss. That, alone, can be very powerful. I don’t think a lot of people give themselves credit and let themselves grieve with any loss that is not of life, limb, or a loved one. Loss of identity or loss of a role, those I’ve found need to be really named, and people need to be encouraged to see those as real losses. So one step would be naming it and honoring that as a real loss, and then inviting grief into the mix as this sort of metabolic force that helps them be honest about that loss. Sit with that, be real with that, and eventually, in time, can turn their attention to what they do have now, what they still have. Then, that transition, that’s the creative moment to pick up on and say, “Well, where do you want to go?”

I have found it very useful to both name the old wise and grizzled part of life, where there’s loss on loss, because there can be some real pride in going through pain. I have experienced it, for sure, so naming that as important, as is, as you come through to the sort of daylight side of it, naming a person as a newborn, and I have found that to be pretty helpful, because people get to say, “Oh, right. I’m new.” Everything’s feeling lost and old and hard, and then this idea of feeling new can be empowering, but also helpful. A newborn isn’t expected to know much. They’ve got to relearn a bunch of very elemental things, and so naming that can also give them that space to not know what the hell they’re doing. Somewhere in that combination, there’s some real alchemy there. Bottom line is, I think, seeing the thing that they’re losing, as well as seeing the creative enterprise of what they could do now, holding both of those simultaneously puts you in a very therapeutic place with people.

Eric: That was beautiful. And I wonder, from your perspective, Naomi, do you have more things to add to that?

Naomi: I think it was beautiful and really resonates with how it shows up for me and how I think of it. I think the only two things that I’d like to maybe add is this idea that we can’t force people to find meaning to re-knit their identity, to un-suffer themselves at any point. So these questions of what brings you joy, what gives you meaning, those are very rational, humanistic ways of a very complex ocean of experiences, and so I think we need to get even more fluid and also more in touch with our mind-body when we ride with people and their suffering. Then, the other thing I think I would also just say is, the other beautiful thing is to notice, one of my teachers used to say “rivers of sanity,” or even another teacher said “the music behind the words.”

It’s these moments that people are holding both; they’re both suffering and they’re both experiencing moments of beauty, quiet joy, love, and peace, and really, actually, supporting people in finding and noticing what their essential nature is, even in the midst of suffering. I think I would love to see a world where we all just sit at the feet of people that are able to deal with serious illness, aging, and all of this suffering, all of these intense situations, and also loss of identity, and still find these moments of beauty and peace and love. I feel like I want to always, whenever I meet them, I want to sell tickets, invite all my friends, and ask them permission, “Can we all come watch you?” Because I think that’s the other side of this, is what does wellbeing look like? So that’s just, I think, another thing.

BJ: Oh, yeah.

Alex: That’s beautifully put. Yeah. Go ahead, BJ.

BJ: Sorry. I’m just getting excited what you’re laying down there, Naomi. That’s so right on. I would say, and maybe you are too, it’s not that joy, beauty, awe, and stuff is in spite of, but I think there’s one thing we have to kind of look at too, and you referenced it earlier, I believe, is the relationship between the depths of that suffering and the exalted places you get with beauty and all. Those can certainly coexist, but beyond coexisting, I think they’re related, and certainly in my experience and in most people’s experience, so to your point about wellbeing, try getting to that wellness state or that wellbeing state without going through some fire, without suffering, so there’s something really complicated in there.

Eric: And I feel like that’s a tension in the work that we do and in general in medicine, is how much should it be focused on the relief of suffering and this goal, like our goal in our head, as often as doctors, nurses, our goal is to relieve suffering, versus how much is sometimes just to sit with the suffering that the patient’s family members are experiencing? When you’re using that metaphor of being on the ocean, if there’s a boat lost in the ocean, and you’re in there with the patient, how much of it is to tell them, “This is where you need to go?” So being that navigator, the captain, versus just what I’m hearing from BJ and Naomi, “How do we get here? Where do you think you want to be?” So being part of the journey instead, so I wonder how you think about that.

Alex: Yeah, and one reflection I have that sort of builds on this is you would think that because suffering is so foundational to the world’s biggest religions. You think about the Book of Job, you think of Buddhism, and it’s so foundational to the field of palliative care. Eric Cassell’s article, The Nature of Suffering, that you might think suffering would appear in the definition of palliative care. It doesn’t, right? It doesn’t. It’s not a component of any accepted or widely published definition of palliative care. Though we all accept that our work is entrenched in dealing with suffering, it doesn’t necessarily follow that our objective is to relieve suffering, because as BJ and Naomi have pointed out today, suffering can be an experience through which we achieve meaning, through which an experience we can understand who we are, our relationship to others, deepen those experiences, those moments of love, joy.

Eric: I’m going to push you on that, Alex, because I actually think that some of the problems within our field is sometimes we focus too much on the relief of what we perceive of someone suffering. I know you agree with this because you actually wrote an article called The Death of Ivan Ilyich. I always forget. Is that the right way to pronounce his name?

Alex: That’s right, yeah. Well, I don’t know. I’m not Russian. [laughter]

Eric: And part of that is this idea of, in hospice, sometimes we just try to medicate suffering away. I actually wrote down the quote that you wrote. You, Guy Micco, and I think Patrice Villars, “Today in the secular world of medicine, we’re becoming ever more accepting of the notion that pain and suffering must be banished from the dying existence,” and when you’re talking about the book itself, Tolstoy’s book, “For him, Ivan, neither the administration of opium or the administrations of a priest can ultimately alleviate the suffering that comes from Ivan Ilyich’s realization, ‘What if my entire life, my entire conscious life simply was not real thing?’ Although his physical pain is great, Tolstoy portrays Ilyich’s moral, mental, and existential pain is even greater. The thing, the reason that that article resonated with me is that sometimes I do think we try to medicate away suffering and potentially any redemptive, if there’s a redemptive quality of suffering, or potentially not even redemptive, like BJ was talking about. A place to grow from, potentially. We medicate that away.

BJ: Yeah. Well, I’ll jump in. There’s a lot in this one too, boy. One thing I’ve realized in my practice is we talk about hospice, palliative medicine, and all this, and they’re sort of a single field, et cetera. But boy, do I realize if I’m working with a patient who has days to weeks to live, I work differently than when I’m upstream with folks. So comfort care, the alleviation of suffering, it seems to be like when someone is at the end of life, and they’re in and out of consciousness, and it’s sort of like, “How can we salvage a moment for this person of peace?” Then, relieving suffering, comfort of care, in a narrow way, makes some sense to me, but otherwise, it’s more, I think, the mandate process to work with suffering. With the mental health, we pulled out the medical model.

We would try to kind of find language for this, and you kind of realize that a pursuit of comfort is really a pursuit of a very flat life, so if we’re trying to do anything in this sort of upstream, deep pathologized state, we’re trying to work with suffering as a piece of reality, but I think our goal really is to help people love their reality or to get clear on themselves, whether that’s clarity about their pain, their misery, their depression, whatever it is, that clarity is something of a goal for us. So anyway, a little bit of a tangent, and where my own practice, we’ve diverged from this pursuit of comfort as the end all be all for all the reasons we’re describing, and just to call out, it’s very, at least for me, very context specific. I’m very liberal with opiates. I’m very liberal with I love yous with patients if they’re in the final days. I’m a little different when we’re upstream on both of those scores.

Eric: How do you think about it, Naomi?

Naomi: Well, I have a special place of not being a doctor within this great group of people. So I have the privilege of not thinking that my job is to alleviate suffering. I don’t think the job of any of us are actually to alleviate suffering. There’s a lot of hubris in that. First, knowing what someone else’s suffering is. Second, thinking we can do it, and third, what do we do to ourselves when we don’t alleviate suffering? That’s the huge pain among us. That’s the pain among my colleagues when they can’t alleviate suffering, because we set this up, we’ve marketed comfort so much now, that when we can’t, we are so hard on ourselves, and that’s painful. Then, that adds on. It’s another layer. It’s that second arrow they talk about in Buddhism. It’s like you aim to alleviate suffering and you didn’t do it, and now you’re a failure.

I think we went in the wrong direction. I would say a huge percentage of the psychological, cultural, social, political, spiritual, religious suffering I see, we medicate with drugs. We’re just at the tip of the iceberg. It doesn’t mean that we want to stay there, but I think we’re just at the tip of the iceberg of understanding how do we bring all of our wisdom, the people’s wisdom, and their caregivers’ wisdom together in the small short times we see people to be able to deal with their total and multifactorial suffering. I think we’re just right at the start. Of course, there’s psychedelics. There’s mind-body medicine. There’s so many things that are happening, but I think we’re still just learning as a community to bring all of the professions together, all of our wisdom with the wisdom of the people to really learn, how do we actually address that?

Alex: Yeah, and it’s hard to-

BJ: I also love that.

Alex: Oh, go ahead. Sorry.

BJ: Sorry. Obviously, I agree with everything Naomi’s saying. This came up in an article that Michael Carney wrote a long time ago, about when palliative care was on ascent. I think it was the title, the article was Palliative Care: Just Another Subspecialty or something like that, and we were going the way of symptomatology. To your point, Naomi, just treating this tip of an iceberg, it’s a powerful thing to treat. That little tip of the iceberg has been ignored by the rest of medicine in unhelpful ways too.

I think there’s some usefulness between discerning between necessary suffering, the stuff we can’t change, and the unnecessary gratuitous stuff that’s maybe a separate tangent to go down. But if we, in the field, see our step one is turning down the noise of symptoms, but that’s just to get to the starting line where the rest of the action is, whether it’s meaning making, help accompany each other through life, or sharing the not knowing, however we want to put it. That symptom control is sort of step 0.5 of 100 steps, and it’s a shame-

Eric: I love that idea too, because I think it goes to what Dame Cicely Saunders was talking about, like total suffering, is that you actually do have to address physical suffering first, often, to get to the other stuff. Even when we think about suffering, this does not equal suffering, because if I go for a run, I may not be thinking my dyspneic is actually a bad thing. It means I am actually working. I’m trying to get this out, so suffering does have some meaning making, or I think Naomi was talking about some desired state that you are trying to get, but you’re not getting, but then again, if I’m always dyspneic, if I’m always suffering from that dyspnea or from that pain, it’s hard to think about anything else. So is there a role to prioritize those symptoms, as we also focus on the other psychological, social, and spiritual aspects of suffering?

BJ: It’s got my vote.

Naomi: Yes.

Alex: Yes, by majority rule.

Eric: But then that leads to sometimes that’s the only thing that we focus on, because it’s the thing that, especially for doctors, it’s the thing that we’ve been trained on what to do.

Alex: Hammer the nail.

Eric: We have not been trained on what’s our role for psychological, social, and especially spiritual distress and suffering. I guess the question for you, Naomi, is as a chaplain, what is the role do you think of the other healthcare providers, the nurses, the doctors, the pharmacists in broaching spiritual suffering, existential suffering?

Naomi: Great question. Thank you. So it’s all of our responsibility to look at the whole person. We study, enjoy, and embrace so many different values of people. If we were are with a patient, and they’re talking us about their granddaughter’s wedding, we ask about who are they marrying, where’s it going to be, and what’s their name, and can you show me a picture? If someone says, “I’m praying for a miracle,” they’re just like, “Thank you. That was so nice, and how’s your [inaudible] doing right now?”

Eric: You were in the last family meeting I was leading. [laughter]

Naomi: And it’s not our fault. We’re all kind people. It’s not because we’re not good people. It’s because we haven’t strengthened those muscles, and we also have this really bad 200 year problem, that you can either be rational and have good judgment, or you can be spiritual and transcendent, and that’s really old school. We’re so tired of that. We’re done with that, so now what we do is we encourage our friends, our colleagues, to screen for spiritual need, one or two questions that help them identify distress and help them know what to do with those, not, “Would you like to see a chaplain.” That’s not a spiritual screen. That makes sure all you find out is whether they like chaplains, know what one is, and how they feel about, so we teach people two or three sentences to screen for distress.

Eric: Give me two sentences, Naomi.

Naomi: What do you turn to when life is challenging like this, such as, very important, prayer, nature, family, meditation, reading, knitting, whatever you see around the room?

Eric: Podcasts.

Naomi: And are you able to turn to it now? We don’t really care if someone’s a Tibetan Buddhist if they’re doing fine with that and they’re getting a lot of nutrition from that, but we do care if someone is spiritually distressed, they’re having a sense of abandonment, loss of personhood purpose, meaning, that there’s been a fissure in their whole identity, where they actually are experiencing pain and symptoms worse than if that was treated, and so we ask you to, number one, know how to do that, and then know what to do with the information you get. So many of us are so afraid to open this box, because we are such lovely people that we want to address every box we open, and we’re like, “Oh. We don’t want to open that one,” because we don’t know how to address it.

We might not have a chaplain around because we’re understaffed and under resourced, those chaplains, but what we say is, “No. Actually, if you don’t let people know that this is invited in, it’ll go undercover.” Then, when you have that goals of care meeting, you’re going to think it’s all set and they’re ready for comfort care, and they’re going to say, “Oh, no. God’s going to take her when God is ready,” or they’re going to say, “No, I can’t do this now. I have to actually finish my novel, and I can’t do comfort care and hospice right now,” so that’s why we’re just like, “Start early, start often, and continue to get comfortable.” All of us ask questions at the beginning that we weren’t necessarily comfortable with, so that’s kind of how we advise people.

Eric: That’s great. I wonder, in the last minute, for each of you, I hear one recommendation for Naomi. I love the two questions, but when you think about the field of palliative care or medicine in general, what’s one thing, if you had a magic wand, what’s one thing that you would want providers to do differently when it comes to suffering or do more of? Naomi, any thoughts on that?

Naomi: I think it’s this whole starting with ourselves first, noticing how we suffer almost every time. Then, also being able to sit with that and give ourselves a moment, and the second is, there isn’t one suffering, and we really can’t name someone else’s suffering, and we have to give everybody’s experience its dignity.

Eric: I love that.

BJ: Naomi, you seem to have stole what I was going to say. That’s perfect. You just spoke my mind. It’s basically, I would encourage any clinician of any stripe, wants to be, I mean, it starts with self-awareness, knowing yourself, and daring to live your own frigging life, the life you have, so whatever language gets a physician or a clinician there, I’m all for that. That seems like step one, two, and three.

Eric: Yeah. To recognize that everybody hurts.

Alex: Yeah, there it is.

(singing)

“If you’re on your own in this life, the days and nights are long. When you think you’ve had too much of this life, hang on. Well, everybody hurts. Everybody cries. Everybody hurts sometimes.”

Eric: Naomi, BJ, thank you for joining us on this podcast.

BJ: Thank you both. Thank you, Naomi.

Naomi: Thank you.

BJ: It’s a pleasure being with you.

Naomi: It’s been wonderful.

Eric: And thank you to all of our listeners for your continued support.