What Makes a Good Death? Karen Steinhauser, Rasa Mikelyte, Edison Vidal

Eric 00:06

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:13

And Alex, we’re going to be talking about a good death today. Good death, good death. Who do we have on to talk about this?

Alex 00:20

We are so pleased to welcome back Karen Steinhauser, who is a social scientist, professor of population health sciences and medicine at Duke and a health scientist at the Durham VA Health System. Karen, welcome back to the GeriPal Podcast.

Karen 00:34

Thank you. Glad to be here.

Alex 00:36

And we’re delighted to welcome Edison Vidal, who’s a geriatrician and palliative care physician and professor of geriatric medicine at the medical school Botucatu at Sao Paulo State University in Brazil. Edison, welcome to GeriPal.

Edison 00:50

Wonderful. Thank you.

Alex 00:51

And Rasa Mikelyte, who is a postdoctoral research fellow at the University of Kent in the UK. Rasa, welcome to the GeriPal podcast.

Rasa 01:03

Thank you for having me.

Eric 01:04

We’ve got a lot to cover on the good death. Maybe we could define what a good death is. Can we define what a good death is? Is it useful concept at Wal? Maybe we’ll go back a little bit in history about this concept and what the future looks like. But before we get into all of that, Edison, I think you have a song request for Alex.

Edison 01:23

Yes, pretty much. I’d like Waters of March.

Eric 01:28

Why Waters of March?

Edison 01:30

So there are several layers for this response and I’ll choose just the first two, but if you want, I can tell you more later on. So first, this is one of the most beloved Brazilian songs and it plays, it’s around the flow of life. So the singer speaks about several random objects and things that pass in life and death is one of them and it just passes by. So it integrates death and life as they are intertwined in real life. That’s one of the beauties. The other one is that’s an example of a cross cultural adaptation. It’s not a literal translation. There’s a Brazilian version.

The song was originally written in Brazil by Antonio Carlos Jobin, who spent a significant time of his life living in the US who made a brilliant partnership with Frank Sinatra. They have a Wonderful City CD about this work. And so there are some terms in the song that they exist in English but not in Portuguese and vice versa. So it’s a beautiful song and I.

Eric 02:38

Love this because we’re going to also be talking about your paper on a good death, looking at two different Countries, we’ll get into the topic of that, but also how we think about a good death from a cross cultural perspective. Alex, are you going to do the Portuguese version?

Alex 02:51

I am not doing the Portuguese version. I thought about it, I tried, but the words just come fast and furious. So I’m going to sing this one in English. I’m sorry, Edison. And for those of you listening to the audio only podcast, you get my son Ren on guitar and bass and he did the Bassanova version. For those of you watching on YouTube, you get me doing this in what my kids describe as Bassanova meets Green Day.

Alex 03:20

(singing)

Eric 04:08

That was great. Alex and I are actually going to Sao Paulo in April.

Alex 04:12

We are. Thanks to Edison. Yeah, thanks for inviting us to Sao Paulo.

Eric 04:16

Sao Paulo Geriatrics and Gerontology Congress in April.

Eric 04:30

So I’m going to turn back time. Alex, we actually did a podcast on Good Death. Do you remember we had DJ Periyakoil on?

Alex 04:38

Yeah, yeah.

Eric 04:39

And you and DJ published an article on…it’s titled should the Concept of a Good Death be Buried.

Alex 04:46

Ah, you like that? It’s punny.

Eric 04:49

Good pun, Good pun. So we’ll have a link to that in our show notes. But you know, the gist of that is, and I think probably everybody kind of agrees that the good death is hard because it’s so individual. What a good death looks like to somebody is so individual. But maybe their themes. That was the kind of big takeaway I took away from that podcast, I think, back in 2018. But I’m going to rewind before 2018. We’re going to go back a quarter of a century. 25 years ago, Karen, you published probably one of the most important papers in palliative care circles. I still reference it.

Alex 05:29

Me too, all the time. Every single grant.

Eric 05:32

It was in Jama 2000. The title was factors considered important at the end of life by patients, family physicians and care providers. And man, they’re just looking at the co authors. You got like folks like Nicholas Christakis and James Tulsky, just superpowers right there. Why did you decide to do this project 25 years ago? I guess before 25 years ago?

Karen 05:58

Yeah, sure. Because the context, I think is so hugely important both to the title and what drove it. Just to give you context, this was. Right. We published it in 2000, but we were collecting the data in 97, 98. And it was right after the support study had come out. And the huge results said that we weren’t doing well in terms of end of life care. Patients dying in pain, dying alone. And so much money was put into education around end of life care. The American Medical association identified it as a high priority. The VA became an early player.

Lots of folks, the Robert Wood Johnson foundation was looking into it and I started a postdoc with James Tulsky and he said, I have a project that I want to do, but I don’t really have time to do it. Would you like to write this grant and do it? And having never written a grant, I said, oh sure, I’ll do that. Fortunately, he’s a great grant writer. So. And I learned, you know, from the best. And we wrote this grant. It was actually part of a study trying to see if we could create a measure of a good death or of quality of dying. That’s what we called it. That’s what we set out to do. And we thought, as we looked at the literature, we thought we don’t really have good data that comes from all the people around the bedside.

It was mostly physician expert driven panels that had come up with anything that was out there at the time, which was very little, a couple of instruments. But then there, and then there were lots of quality of life instruments, but they didn’t address any of the needs associated with end of life. So we thought, let’s start with square one, and got a grant from the va, who was one of the early funders before the NIH got in and PCRC was just getting started or about to get started. And we wrote this to have two steps. One, a qualitative component and then a quantitative follow up and the qualitative component. We decided yes, we’ll interview physicians, but we also want the perspective of nurses and social work and chaplaincy, hospice volunteers, patients and bereaved family members.

All the patients had either cancer or CHF or COPD and were sort of the surprise question, had enough medical characteristics that they were in serious illness, probably in the. And the end of life. So I put, I put that out there just as we’re setting up our populations to compare later between all these studies. That, that was a, you know, that was the setting and the population. And we were able to do that because of working in the va. So we had these databases that we could connect with national samples of patients and bereaved family members. So that was the context.

Eric 09:02

And I love that study because what I remember when I teach about it, you can tell me if I’m teaching anything wrong, is that there were some factors that pretty much most, not 100%, but most people agreed with. I think it was greater than 90% that it was important to do to be pain free. It was important to have a doctor who one can trust or a nurse who can communicate with.

There are things that people universally kind of agreed with, not universally, close. Universally agreed with. There were things that they had pretty big differences. So the one that pops out to me always is being mentally aware. Doctors and nurses did not rate that very high, but patients sure did. And that just reminds me of our everyday practice. We think, oh, a good death is getting pain 100%. Let’s just give them meds, meds, meds to make them comfortable. But what’s important to most patients is also being mentally clear.

Alex 10:02

This came up today. I’m attending on palliative care right now. Came up today, this exact issue.

Eric 10:07

Yeah. Is that a good summary of your finding?

Karen 10:11

Yeah, no, that was from the JAMA paper. I was thinking also the other one, the qualitative study was in Annals that sort of looked at the domains, but the factors. Absolutely. That was one. The other one that really jumped out. And I’ve still had sometimes physicians say to me, oren and palliative care. There’s no way that’s true. And it’s that when we had rate, are you at peace?

And we asked where patients ranked it, and they ranked it on equal footing with being free of pain. Now, doctors ranked it quite a bit lower and clinicians in general put it quite a bit lower. Well, that’s pretty important to know, right, that patients and families are kind of holding those components of that sense of peace and coming to terms with what’s going on for both Sides as being as important as being free of pain.

Edison 11:02

Wow.

Eric 11:03

Yeah. And you know, I guess the big question is, you started out of this project, you said to think about like, can you create a quality measure around this? And I’m wondering, did you? Could you?

Karen 11:16

So we did, but we kind of shifted gears partway through it because we changed the language around a good death because it was so challenging. And we started and good dying and we started to think about what’s quality of life at the end of life. Then after this study was done, the JAMA study, we then wrote another grant that the VA supported to create a measure of quality of life. We call it the qual e that was built off these components and psychometrically sounds and so forth.

And the other thing that I will say, particularly from the qualitative pieces, we started out analyzing the data and we thought, okay, we’ll put them in the buckets. That are discipline driven. Like, here are your physical concerns, here are your social. Here are your psychological. Then when we looked at the data, it didn’t fit how patients and families talked about the experience at all. That’s why we had really different categories like completion or clear decision making. Because people don’t come in and say, let me, let me review my psychological concerns for you and then let’s do a physical function assessment for me. You know, they just don’t.

Alex 12:28

Right, right.

Karen 12:30

Much more. Can I do things that help me feel normal?

Alex 12:33

Yes, go ahead, Edison.

Edison 12:35

There’s one thing that I remember from reading your studies, Karen, which have been a great inspiration for us, especially in the beginning of my career as a palliative care physician. And that was defining that it was important for people to feel that they were still contributing and giving to others. That’s something that I found so valuable that didn’t occur to me before. And because there are so many opportunities to help people, patients to see that even being sick and severely ill, that they can still contribute even by giving the example about how they are facing the biggest challenges in the lives of someone which is facing death. And that’s something that’s changed the way that I see things.

Karen 13:20

Thank you. That was one of the beautiful things that came out in the data. Kind of really hearing that again and again that we had been so focused on patients in particular and families too, being recipients of care and sort of what can we do for you? But if you’re going to sort of be together a bit in this process, not just do for, but be with. That’s understanding the ways in which people have to give throughout their lifetime. And I’ll share with you too that my two great colleagues and mentors in the process, James Tulsky, you know very well, and his great contributions to the field. And then also Elizabeth Jody Klipp, who was a developmental psychologist and nurse. So she really thought about lifespan too.

Eric 14:09

And I also love the one that surprised me always. And I still use this when I’m on my ethics committee or I’m thinking, talking to patients and they say they’re worried about being a burden to their family members. And the amount of times I hear the response, oh, don’t worry, you’re not a burden. Oh, you couldn’t be a burden. Like, this is a value that they’re expressing deeply to you. I don’t want to be a burden to my family or I don’t want to be a burden to society. Those two things came up. I still remember reading your article.

Those two things came up. As far as one of those discrepancies, healthcare providers value it low, patients valued it very high. And I still think about how I should respond to those situations. Instead of pooh, poohing. A deeply held value is actually hear more about it, Tell me more. This is something that they’re willing to share with you. We should hold that value with them.

Alex 15:00

Yeah.

Karen 15:01

Building on that, the other thing that was really surprising, sort of along those lines, was that we asked people to rank order 9 items of most to least important ranking and the kind of literature and anecdotally people would throw out, oh, 90% of people want to die at home by patients and families. It got ranked last.

Edison 15:23

Last.

Karen 15:24

From our qualitative data, we knew that that didn’t mean that it’s really, for some people, it’s very important to die at home. But for other people, to your point about burden, it could be that they’re worried that dying at home really represents a huge burden to their family and so. Or there might be other issues of caregiving. So as you’re saying. Exactly. Clinically, it’s about really understanding what’s important to that person, what’s their context.

Alex 15:51

Yeah. This was such a, this is such a tremendously important study and I’m glad that Edison and Rasa are continuing this work. And I wonder, before we move on to Edison and Rasa, if you could say a little bit more about how you decided to transition away from the language of a good death towards quality of care at the end of life and sort of what, what were the reasons behind that?

Karen 16:14

Some of it was related to how patients saw Things versus how those around patients. Those around patients were more comfortable just in our study. This may not hold true now, but back in our study, more comfortable talking about the death of that person and the bereavement period and thereafter. But when we talk to patients, they were very focused on, I want to live as fully as possible for as long as I live. And yes, I want these things about dying, but I really. It’s like that Snoopy’s character kind of cartoon that I’ve seen that Charlie Brown says one day we will all die.

And then Snoopy says something like, and on all the other days we won’t. And it was the idea that again, patients were really focused on how do I live as fully as I can. I’m not ignoring that I’m dying, but I really want to. Let’s just not talk about death that as much as we start dying. So does that make sense?

Eric 17:19

How much is that? As. As health care providers, we think about death being like a process, not a moment, not an not. I mean, sometimes an outcome when we’re doing research, but it’s a process. Like it’s. It’s maybe a day, it may be months, it may be years for some people when we’re thinking about the process. But when it sounds like when patients are thinking about family members, death is like, oh, like in my last hours or days, I’m in my bed and I’m dying or the moment I die.

Alex 17:51

The death versus dying, the moment versus living until.

Karen 17:55

Right, right. And I think the other is that providers have an Anna of thousands. So you know the process that’s going to be at place whereas the patient, they have experiences from friends or family, but really they have an n of 1. And so that’s what we heard again, we’d love to explore it again, but that’s at the time what we found. And so that really caused us to try to have patient focused language.

Alex 18:24

Yeah, I guess one of the things that it’s so intuitive to do studies on the good death and what that means to clinicians, for example, or to researchers, and it may not be to patients, family members. And it’s so revealing that there are these differences between the way that we would rank order these things. And one of the other pieces that came out to me about your study was the heterogeneity and that there is tremendous variation.

And so the point is both that these priorities might be not what we expect and they might differ between clinicians versus patients and that there’s tremendous variation and you can’t Shortcut to assume that highly prevalent attitudes apply to individuals and that might mistakenly lead to policies like, I don’t know, Liverpool Care Pathway. I’m trying to bait Rasa into saying something here. Prioritizing death at home or a tremendous focus on advanced care planning and the Patient Self Determination Act. And if we only could plan, for example.

Karen 19:31

I heard that from so many. I can remember that nurse who said to me, we have to be really careful to not have implied to patients, hey, you’re not dying the right way. You need to do this, this and this. Even things like peace, where huge portions. A majority of people talk about wanting to find some peace, but of course the people who aren’t and they have been sort of fighters and whatever and it’s not going to go out with a bow tied up. So again, what you’re saying, Alex, there’s as much heterogeneity within is between and really doing the work of that.

Alex 20:10

I also want to say I appreciate the title of your. I think it was the Annals piece, was the qualitative piece. In Search of a Good Death. Was that the title?

Karen 20:17

Yeah.

Alex 20:18

Yeah, because you could have titled it I Found the Good Death, but that wouldn’t have been right because the Good Death, it’s like ultimately unknowable, inscrutable. This is something that we continually strive towards an understanding of that is so highly individual. And one of the great mysteries.

Eric 20:38

I’d like to get into that. But before we get into is there value in the label a good death, Maybe we can talk about, because your study included people with cancer, heart failure. What do these themes look like when you’re dealing with maybe diseases that have longer periods of frailty and cognitive impairment, incapacity. And I think that this leads us. And how does it apply to different cultures? Because Karen’s study was in Veterans. Right. Does it apply to other cultures? And Edison, I’m going to start off with you. Why did your group decide to do your study?

Edison 21:19

Well, I think I’d like to pass it through. Rasa.

Eric 21:22

All right. Yeah, Rasa.

Edison 21:24

Yeah.

Rasa 21:26

It’s not fair, Edison, but okay, I’ll give this a stab and then you can add more to it.

Karen 21:32

So.

Rasa 21:32

Well, partly opportunism because a bunch of us were in Brazil kind of trying to figure out. We knew we wanted to do research and ideally comparative research on something to do with palliative care. But exactly what it was going to be and what we want to look at took a minute to arrive at. And I don’t think, Edison, correct me if I’M wrong because this again has been a while back now, but we didn’t land on the exact idea while we were in Botuka 2, the kind of core team, we came up with it like nine months later on, I think Skype back then, some of us joining from Nottingham, some from Brazil, where eventually we kind of found that the one thing that really bound us was that the voices of people living with dementia in the what is a good death Debate was sorely lacking.

And when multiple groups of people were included, usually the voices of professionals or caregivers were so much more prominent. And we very specifically wanted to ask that question, but we also wanted to see if there was going to be cultural differences between our two settings. And boy did we find some.

Eric 22:45

So you actually included individuals with dementia? I’m guessing not advanced dementia totally.

Rasa 22:53

Well, we never had ethics clearance to test or assess someone’s level of dementia, but on the basis that people who took part in the interviews were had cognitive capacity and mental capacity to consent to taking part in the interview, that tends to indicate people had either mild or moderate dementia. So we were asking people to imagine their futures. And I guess another important point here is that we weren’t interviewing patients, although all of us are patients. Right? We were interviewing patients, people.

We were asking people from their lived experience point of view. And we did ask some questions about what good care may look like, what their worries about care were. But the focus very much was on the lived experience of dementia as a person and the imagined good death as well as a bad death, because it’s impossible to ask that question and not hear stories of what bad looks like.

Eric 23:54

Was it hard to create a survey questions around good deaths and bad deaths when you’re dealing with two different languages from Portuguese?

Rasa 24:04

Very good question. And I’m going to hand over to Edison, because I think Edison remembers this more clearly. But you brought up some points about how do we talk about the process of dying versus the moment of death. And that was one of the points that we really struggled to translate. Well, in a sense way that there would be parity. But Edison, you remember that story better, I think.

Edison 24:28

Yeah. So just take a sec. I just would like to take a step back because this. So we had a meeting in Brazil that was funded by a collaboration between the Newton Fund from the UK and FatPesp here in Sao Paulo, the state of Sao Paulo. And so there were researchers from the UK and Brazil meeting together to figure out possible grant proposals and research projects together in collaborations. That’s how Rasa and I And a friend of ours, Karen, who is also in the uk, who is a nurse who also works with the mansion, met together to figure out a research project.

And there was Francis, also from another side of Brazil here, and we were trying to figure out a research project. And while we are talking, and those conversations are so enriching. So Karen. So I had been doing research in advanced health planning here in Brazil, and Karen had done a PhD in the UK, interviewing people with dementia. And that was fascinating to me because the typical Brazilian outlook on people with dementia is that we would never be able to interview them for anything. And that’s something that changed. So our views about people with dementia changed dramatically because of our conversations with our friends from the uk, because even diagnosing dementia there, even though we claim to use the same criteria, it’s a different process here in Brazil, people tend to be diagnosed much later on than in the uk.

That’s a complex issue. So it fascinated me that Karen has interviewed people about care preferences in the uk, people with dementia. And then because I had read Karen’s work and when I was doing my PhD, I had to, for a discipline on qualitative studies, I had to write a draft proposal about any study using qualitative methods. I drew from Karen’s work and I thought, well, it would be amazing to do a research in Brazil, asking Brazilian older people what would a good death mean for them. And then Karen brought this information that we could ask people if they mentioned, which was kind of a revolution to me, and they said, so this is a perfect idea, we should do this. But I realized that just in the last day of the meeting, and it was later on that we started writing it and Karen wrote the first draft in the uk. And then when we were working.

Eric 27:09

On.

Edison 27:10

The qualitative questionnaire on the semi. Better place, the semi structured interview guide there was. So it was first written in the uk, then we translated it into Portuguese, but you had to adapt it. And this question about what’s a good death mean? So I don’t remember exactly the question, but when you die, it’s just something about when you die. And here in Brazil, when you ask when you die, people usually think about the moment of death. And then the question becomes much more important about what happens later on. And we couldn’t use that wording because it wouldn’t work here. So we had to move to asking about your last days and hours of life.

Eric 27:58

Do you think it’s anything different in other. Like when I think of. I think in the us, I think Like I was saying before, I think there’s a difference between healthcare providers, how they think about death and family members. I think they think about those last moments. Like from the paintings that you see in art galleries to TV shows of people sitting around someone’s deathbed versus. It sounds like from a healthcare provider standpoint, it’s a longer process.

Edison 28:27

Yeah. So people see it differently and the language plays a role here. So in Brazil, when you die. So how would you like to be cared for when you die? It’s meaningless.

Eric 28:39

Yeah.

Edison 28:40

Because when I die, I’m not there anymore.

Eric 28:42

If it’s a moment issue.

Rasa 28:44

Yeah, yeah. The difference, if I can interrupt Edison, is not, and I think you’re absolutely right, that people with lived experience, people who, you know, we would place on a palliative care register, don’t necessarily see themselves as dying.

Eric 29:00

Yeah.

Rasa 29:01

But the difference for us culturally was that when I was asking a question, when you’re dying in the uk, people were thinking about perhaps having the movement restricted, being on the bed, that kind of situation. Those were the pictures they were painting. Whereas for Edison and Edison, correct me if I’m wrong, but your participants understood it as the moment of death.

Edison 29:26

Yeah, exactly.

Rasa 29:27

And that in terms of translation, lexically was really interesting.

Eric 29:31

Yeah. Well, I want to jump because I want to. I want to jump to what did you, what did you find in your study.

Rasa 29:52

I’m going to say it from the perspective of a researcher. Perhaps that’s, that’s a more interesting story.

Eric 29:57

Yeah. But don’t get too wonky in it. Kind of big picture for our audience. What did you find?

Rasa 30:01

Okay, so we found that where you live matters. And it’s really unsurprising, you’re right, of course, in discussing how individual a good death is or ideas of what a good death would look like. Of course it is. But I think it would be short sighted to kind of think that our cultural, social, political, health and care contexts do not shape who we are and what futures we imagine for ourselves and what we want for ourselves at the end of our lives. So we found that it did matter.

And the thing I wanted to say from a researcher perspective is that we started expecting that not everything will be universal. We ended up being really surprised by just how near dichotomous some of those differences were. And because we did a lot of the analysis together, I guess we also really questioned our own biases. But if you want to hear More about.

Alex 31:03

So what did you find in the UK versus in Brazil?

Rasa 31:08

So we found in the UK what was really strong is that people wanted choice. People wanted control over the end of their lives. And that feeling out of control, which can be the experience of advanced dementia anyway, that was very fear provoking for people. So if you wanted to assuage fears, one way to do it, we theorize, is by offering more choice and control. As neoliberal agenda as that may be. It seems to have permeated the context. And what absolutely floored me is that this narrative was not just not as prominent in Brazil, it was nearly entirely absent. But I can’t tell the story. I wasn’t the custodian of those voices and that data from Brazil, Edison was. So Edison. What about choice and control in Brazil?

Edison 32:01

So choice and control in Brazil sounded in our interviews as almost impossible. We had to take a step back and explain what we meant by choice and control because so people would ask us what do you mean having control over death? That’s, that’s not possible. That’s something, that’s. That, that’s God’s work. And for example, we had to, to mention people. So to, to participants the possibility of advancing a planning as a way of explaining what was important to them as, and exercising some kind of control. And so it was a concept that was out of their reality.

Whereas the, the idea of religion and spirituality of having a God that’s in control and that’s that God is the one who’s going to decide everything and their decision will be always good. And that made people frame a good death around being at peace with God, being in a good relationship with God, which is almost absent from the uk. So that kind of contrast, it was so strong that it was a surprise for us. And I’m a Brazilian, I have lived here almost the most, the biggest part of my life. And I wasn’t aware because I’m embedded in that reality, in that culture, how religion and spirituality frames that kind of view and how strongly it protects people.

So it seems that religion and spirituality is buffered that kind of anxiety, it was a major means of emotional regulation for people. And that view was beautiful. And at the same time there were also. So besides those differences, there are also some striking commonalities between the two countries. So for example, what Eric mentioned earlier on about the fear of being a burden, it was present in the two countries. So people are worried. And I think that this is something that’s in palliative care. We still struggle how to address these Worries in an appropriate manner.

Some differences also were very remarkable about the meaning of dementia. So in both countries, dementia is a disease that has a very strong stigma. But in the uk, people internalized that stigma and they were afraid of being empty shells. Whereas in Brazil there are some, some participants would say, so when I become a child again, and with completely different language to address the loss of independence.

Rasa 34:46

But if I may jump in, Edison, those quotes weren’t from. So it wasn’t from the perspective of fearing to be infantilized, that it wasn’t a bad thing.

Edison 34:58

Yeah, exactly. So they were taking it as a natural moment in life and that made us reflect again about dementia because we change all the time. So the person that I am now is different from the person that I was 10 years ago or five years ago, or before my children were born. And people with dementia are also changing. Why is their previous self, before having a diagnosis with dementia, worthier than their current self with dementia? And that made us think, and that’s part of the beauty of this kind of cross cultural study, because we are, we have the opportunity to, to look at our own realities with different eyes. And, and that’s very beautiful.

Eric 35:46

Karen, I wonder, as you hear the results, did anything surprise you?

Karen 35:50

I would say, may I be a sociologist for a minute, please? Well, I just found myself thinking first, what a beautiful study to give us really fine examples of how culture is not some thin veneer, some window dressing, that, oh yeah, we have to pay attention to culture. But it’s like so deeply embedded, right, in how we construct reality, how we construct the meaning of this moment. And I think about, in sociology, we’ll say people do meaning making and meaning taking, and we take meaning from institutions, from culture, from religion, et cetera. And here you have this beautiful example of the uk, which cultural values, correct me if I’m wrong, but I think about as really valuing autonomy, valuing secular individualism.

Right. And then along with that, this. It should not surprise us then that these core concepts of choice and control and planning are preferenced. And in Brazil there’s more of a culture of collectivism and spirituality and maybe even divine surrender. Would that be correct, Edison? Potentially. And then we’ve got peace with God, acceptance, that’s what’s operative. And in the US we have this sort of hybrid autonomy, meaning making. Right. And so I think from a big culture perspective, wow, how instructive. But also to Alex’s earlier point, we have to think of all the subcultures within a population and what is the belief system of that family, of that right, based on their heritage, based on their practices and beliefs, so that we really understand those values deeply and then how that’s going to play out and what they want.

Edison 37:37

Yeah, Beautifully said, Karen. That brings me to think about one of the most beautiful sentences that I listened to when I was learning palliative care 20 years ago. That was an interview by CCD Saunders when she was asked about what was the most important advice that she would like to give to young people entering medicine or palliative care. And then she said, listen to your patients, listen to their needs, because they will tell you. They will tell you what they need, they will tell you what they can achieve.

And this is when you try to figure out a good effort. And to a large extent, the whole field of palliative care emerged to make this experience of dying better, less. Less of failure to address suffering as it had been throughout history. And the first step is not to impose to people what we believe about death is, but to be open to listen to them. And that’s something that’s working with Rasa and Karen. Karen and others from the UK and even from Brazil, that it helped me see that we can ask people if they mention so many things.

Alex 38:54

Yeah, right.

Edison 38:55

That we didn’t ask before because we thought we are.

Alex 38:59

We didn’t think it was possible. Right, right.

Edison 39:02

Wouldn’t say anything meaningful, but they can.

Alex 39:03

Say, right, we need to privilege their voices. Karen, you’re going to say something.

Karen 39:07

Yeah, I was just going to say that. That I think. But sometimes entering those conversations can feel thorny and a little overwhelming. Right. Because can I get out of my depth quickly? And that same team that wrote these papers, years later, we wrote a paper on am I at peace or are you at peace? And using that concept of peace, and I know that you tacked on that as well.

And if you ask people about that, what would it mean to be at peace? How might you get there? And hearing from them, the how might you get there? Tells you, they’ll tell you all about their values. I’ll get there when I have control over the timing, the place. Or. Or I’ll get there when I have. It’s my relationship with my family or with God. Eric.

Eric 39:54

Yeah, I guess I’m a little. I. I remain a little bit confused. Like how important you. You all have done studies around like, like pop. More. Bigger, not individual, but bigger population. You know, qualitative, quantitative on what is a good death. Like what’s important to people. How important is it to do that knowing. Because I’m also hearing from you. It’s so individual. The only way to find out what a good death is to someone is to ask them like are both true, are both important?

Karen 40:27

You know, I think that I’ll say this is where I’m just going to speak from our data.

Eric 40:32

Yeah, please.

Karen 40:33

From a long time ago. And you, everybody else can chime in. That I think is what was in our qualitative piece. We tried to say that in the piece in annals that are in search of a good death. It is ultimately really individual. But maybe there are some guideposts that we could use. In general, people find it really important to have their symptoms and pain managed. It’s hard to get to meaning making if you are a 9 out of a 10 with pain and clear decision making, that sort of preparation, more general preparation, what do they need to do that?

That’s why we did completion, contributing to others and really treating them as a whole person. So those were just the categories that came out of those data. But I think it is okay to have kind of a rubric, a heuristic for thinking about these are the things that generally matter and how you get there is different for every person. And then you get to always ask what else? What am I missing.

Rasa 41:36

This one. Yeah, I think, I think we also can’t take it as, you know, a thing in a vacuum or one snapshot in time, perhaps we could just default to everyone is beautifully individual and we just ask everyone if we didn’t base entire systems of care, delivery of policy, of everything else in aggregation.

Eric 41:58

Quality metrics. Right. And quality metrics like yeah, yeah.

Rasa 42:05

And in that case, if you’re going to do those kind of metrics, if you’re going to do aggregation, then making sure that a diverse set of voices is heard that we don’t, for example, exclude the global south or people from middle or lower income countries. If we think about what we built this on, other groups of people, marginalized subculture groups in any one given country or society. If we didn’t build the system on exclusion, then maybe we would just be having a conversation about how wonderfully individual everyone is. But yeah, structural factors play a role. So this discussion is still necessary. Anyway.

Edison 42:50

When you wrote the paper and when we were analyzing the data, we were worried that people could take our results as evidence that they shouldn’t listen to patients, to their patients with dementia and that they would just assume that because they are from Brazil, that religiosity is everything that they need and that they don’t have to worry about choice and control. So Brazil is huge. People are different, There are subcultures everywhere. And also in the uk, I’m sure there’s, there are people for whom religiosity is everything or is very important or as much important as control.

So the idea here is, and I think that’s, that’s something that comes already from Karen’s studies about. So the lesson is that the good death is multidimensional. And what our findings in Cairns and all of other people who have been researching this tell us, they raise our sensibility to issues that we should try to be aware of when you’re talking to patients, because unless I had read Karen’s study, I wouldn’t be aware that people, for some people being able to give to others, to be useful to others at the end of life would be important. And so it was under my, rather my radar. And so those, our findings and Karen’s and others, they tell us about things that we should start thinking about so that we can better listen to what people are trying to tell us, what’s important to them.

Eric 44:26

Beautifully said, Addison. Alex. Oh, go ahead, Karen.

Karen 44:30

I was just going to jump on because I loved what Russell said about, you know, we can’t be in this just wildly individualism space and we’ve certain we can go by the evidence. We’ve got a lot of data here in the United States, it’s the National Quality Forum, that’s put together areas that we can pay attention to and have quality metrics and we have other data. Absolutely. That can guide us in the general areas. And then still, I think when we went down the individualism path, it’s to say, even with those broad guidelines, we have to make sure we’re tuning in to the subtleties and the way that structure and agency kind of come together in creating, you know, a good experience.

Eric 45:13

Yeah, I know we’re running out of time. Can I ask you one last question, Karen, because you mentioned something earlier, is that patients, this may be their first time ever experiencing death, their family members experiencing death and dying. We’ve seen thousands if not tens of thousands of people dying of deaths. How do you think about this, this idea of a good death or quality of end of life and incorporating the patient’s values and experiences, but also that we’re guides too. We’ve seen this. Does our thoughts on a good death matter at all?

Karen 45:49

That’s why we had all in the studies and we looked at them, all the data, because we thought we can’t make conclusions when people have an n of 1, that voice is hugely important. And it’s so helpful to have the experiences of the nurse at the bedside and the social worker and the chaplain. And that was our experience that. That was hugely important so that you could get the wisdom of people who had cared for folks at the end of life, the community.

Alex 46:20

We should let Rasa go. It’s pretty late in the UK right now, Eric.

Eric 46:23

Okay, let’s get some more waters.

Alex 46:26

Waters in March.

Karen 46:27

Yeah.

Alex 46:27

Bossa Nova meets Green Day. For those of you watching on YouTube. Apologies, everyone in Brazil.

Alex 46:37

(singing)

Eric 47:24

Thank you for joining us on this podcast. Karen, loved your work. Edison Rasa, just beautiful study. We’ll have links to all of that in our show notes, but thank you very, very much.

Karen 47:38

Thank you, thank you.

Eric 47:40

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

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Disclosures:
Moderators Drs. Widera and Smith have no relationships to disclose.  Guest Karen Steinhauser, Rasa Mikelyte, and Edison Vidal have no relationships to disclose.

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