On this week's podcast, we talk with the authors of a Journal of the American Geriatrics Society (JAGS) article titled Should We Bury “The Good Death"? As luck may have it, one of the authors is co-host Alex Smith, and the other is a leader in geriatrics and palliative care, VJ Periyakoil. Alex and VJ's critique of the ‘good death’ was published alongside a paired commentary from Age and Ageing from the British Geriatrics Society.
So listen in and check out these two great articles:
- Should We Bury “The Good Death”? JAGS 2018
- Reappraising ‘the good death’ for populations in the age of ageing. Age and Ageing 2018
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Eric: Welcome to the GeriPal Podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And, we have another host with us today, Lynn Flint.
Eric: And Alex, who is our guest?
Alex: Today we have VJ Periyakoil who is joining us from the VA Palo Alto in Stanford, just about an hour south of us. Welcome to the GeriPal Podcast VJ.
VJ: Thank you so much for having me, it's a lot of fun to talk with you guys.
Eric: And, we have a really interesting topic today, the topic of the "good death." We'll talk a little bit about what that means and articles that you wrote in the Journal of American Geriatric Society and another article on Age and Aging on the similar subject. But, before we do that, we ask all of our guests, do you have a song for Alex to sing?
VJ: Absolutely, I love Adele so if Alex can sing "Hello" for me because I feel that that talks about ... that has a lot of relevance with life review and other palliative care topics so, Alex, take it away.
Alex: I am not Adele.
VJ: We can hardly tell Alex.
Alex: Just in case there was any question. But, I'll give it a try. [Singing]
Alex: That's a little taste.
VJ: That was amazing. That was amazing.
Eric: Well, there's more to come at the end of the podcast.
Eric: Alex is going to hit the highs.
Alex: We'll see.
Lynn: I thought that song was about somebody's phone not working. I don't know.
Eric: Who talks on the phone though? Is that like a text hello?
Alex: Well, Eric and I were wondering if this is hello from the other side, like a person's died and they're looking back.
Eric: So, VJ, why did you pick this song?
VJ: I love her voice. It has so many layers and it's just amazing so I'm a big fan. But, this song also has, sort of, palliative care relevance, exactly like Alex said, "hello from the other side." There's a lot of regret, which is one of the primary emotions we see with people as they are dying. And then she talks about love and forgiveness so, I felt like it was very appropriate for palliative care.
Eric: I always thought it was the other side of the pond. No?
VJ: That's right. That was another reason I picked it, because this is a companion article with our colleagues from UK so, I thought picking a UK singer would be appropriate.
Eric: Wonderful. So, Age and Aging for those who don't know is part of the British Geriatric Society, and Journal of American Geriatric Society or JAGS is associated with American Geriatric Society, so this is the perfect song VJ. Well done.
VJ: From now, it's just going to go south, this whole ... my contribution.
Eric: So, let's talk. Now, I'm going to turn Alex no longer into a guest, I mean a host. He's now a guest and Lynn Flint, also from UCSF is going to be co-host cause Alex co-authored a paper with VJ in the Journal of American Geriatric Society on the title ... get ready for this audience, "Should We Bury the Good Death?"
Lynn: Great title.
Eric: Great title.
Alex: Is it cheeky?
Lynn: To use a British word.
Alex: To use a British word.
Eric: We're much less cheeky in their title in Age and Aging, It was “Reappraising the Good Death for Populations in the Age of Aging”. I got to say, I think you won out on the title guys.
VJ: And, they won out on the gravitas.
Eric: They did. So, maybe before we get into the topic, how did this come as an interest to you?
VJ: From my side, I have been taking care of patients as you guys have and been at the bed side of patients. I don't think I ever heard any specific patient talk about wanting to have a good death. People want reasonable dying experience. That is all the grief, and the joy that comes at the end of life as people are looking at their life in a whole different way. But, I never had a patient tell me, "please make sure that I have a good death." So, it's more about the dying and so I feel like this is more of a issue for the clinicians and not as much for the patients. I believe that was one sentiment. I'm curious to see what Alex thinks.
Alex: Yeah, I think that's absolutely right and clinically I think we've all had this experience and went through it ourselves most likely. In residency, you often feel like you are torturing patients. You're flogging them. Those are common phrases. And so you develop this concept, not explicitly, but implicitly through this, what they call a "hidden curriculum" that there is a bad way to die. And, you also, at the same time, develop a concept of what a good way to die is and that a good way to die is at home, without having CPR performed, without being in the intensive care unit. And I think many of the trainees that we work with have drank that Kool-Aid and come to training with that zeal for "I'm going to help people experience the good death and avoid the bad death."
Lynn: But not until I've done lots of things and I'm absolutely positive there's no more tests or interventions to do.
Alex: Right, there are different sides to it. There are those who believe that the good death ... that no death is a good death and that they have to do every test, leave no stone unturned and that has driven, in a large part, this sort of conveyor belt as Zitter described it when we had her on our podcast, of technological intervention and increasing medicalization of the dying process. But, there are others who are drawn to geriatrics and palliative care as disciplines who fight against that movement within our system.
Lynn: Well, the point that I was trying to make there was around, I think, attention that both of these articles get at, which is that it might actually be easier to ensure a "good death" if we really focus on it at the very end as opposed to making these big, broad sweeping changes to the system. Or, to the way that we care for patients who are dying and slowing down over a period of time.
VJ: I’d say that there is ... concurrently there is a need for both population health approaches at a very broad level, but also personalized strategies that fit the individual patient right in front of us. And I think that might be what you're getting at a little bit Lynn. In terms of, what is the right thing to do. And then the other question I often find useful in providing care is, at every step of the way, asking something very simple, which is, "who are we serving and what do they need?"
So, if I'm serving myself because I want to do one more CT scan just so I can see, or just so I can be less anxious, that's a different agenda right? Meaning I'm serving myself as opposed to, "what does this patient in front of you need?" And, it might be that they want the CT scan, which is a whole different issue, right. But it comes down to who is the patient at the given time and sometimes the doctor is the patient, meaning they're treating themselves more than treating the patient.
Eric: OK I'm going to take it a step back at this point. If you're gonna argue for burying the good death, how would you define, what does the phrase "good death” mean?
Alex: That's a good question. I think that's part of the problem with the good death, is that people develop ... sort of try to attribute to others what their own conception of the good death is. And one of the points that we argue in our paper and that Christian Pollack and Jane Seymour argue in the companion paper in Age and Aging, is there is no monolithic concept of the good death. The good death is highly individual and is highly influenced by your own personal experiences, your history, cultural attitudes, beliefs and behaviors, your social networks and relationships. And that, when we impose one standard of the good death, the good death is dying at home for example, as has been instituted in the UK, for example, as a quality metric. We actually constrain choice, autonomy and we don't allow for the tremendous diversity of perspectives and experiences that people bring to bear towards the end of life.
Eric: Well, in the UK is the quality metric where you die? Like, your preferred place of death, or is it-
Alex: Oh actually you're right. It's a preferred place of death, yeah. Which is good in a way because it's a match between goals and location rather than assigning it as a home based death. Although there is an increasing focus, I should say, talking to Christian and Jane Seymour about what's going on in the UK on death at home.
VJ: I'd say that even having a doctor ask that question is a huge step forward that we would even ask the patient where might be an ideal place for them to spend the last days, hours. And that then immediately personalizes the conversation and hopefully serves as a gateway for patients to tell us more about what matters most to them in a way that we can serve their needs to the extent we can. And as Alex said, we're really constrained by the system that we are in and to be mindful of that as well.
Eric: So there was another great JAGS article that just came out this week on the "Influences of Care Preferences of Older People”, lead author was Simon Etkind, I'm not sure if I'm pronouncing that right. But, I really like this article because it talked about the different influences on preferences including, they had a wonderful diagram showing that how family and care contacts, individual aspects and illness aspects all influence care preferences and probably one of the strongest influences is actually that family and care contact. So, it may not be enough just to ask people, where would you ... what's your preference of where you would want to die. Cause that may different also than what's possible, what other worries that they have. Because they talk about in this article how patients also, one of their leading things that they're concerned about is not being a burden to their family members as well.
Alex: Right, this is an incredibly important point here. When Karen Steinhauser did her landmark study, she actually titled it, "In Search of a Good Death," right. And then she did a survey, a national survey, of people with serious illness to caregivers and people who worked in hospice palliative care. She found that, yes, people felt it was important to die at home, which is always cited in studies. People want to die at home but there's a mismatch for dying in hospitals.
But, it was the seventh most important factor that patients ranked, right. Seventh most, and above that, factors like, not being a burden to people they love, having a sense of spiritual connection and getting right with God before dying. Those factors were higher, being free from pain. And so those factors might intervene if somebody can't be at home without burdening their loved one, without being in pain, hopefully not with the support of hospice. But you could see how that might lead to decisions that lead a person to not die at home. Because when we assume that the preferred place of death should be the top priority or that dying at home should be the top priority, we impose that decision on people, we're constraining their choice and not allowing for this, I'm just looking at this figure now, this whole larger context that the person resides in.
Eric: And we'll include that JAGS article in our podcast review on GeriPal website. And, going to Alex's point too, if I remember the Steinhauser study correctly, while family members and physicians viewed being free from pain highly important as far as a good death, patients valued being mentally clear more than being pain-free. Is that right?
Alex: That's right. I also believe that dying at home was ranked more highly by clinicians than by patients.
VJ: I think that as people get sicker, and we have data nationally that show that people's functional status declines significantly in the last two years of life right. And at that point, to me this individual view of what they want or your own personhood, sort of, becomes a little bit more translucent, if you will, and we ... at least in my experience I find myself providing care for a care unit. So it's not just about what the patient wants, it's also about what the family can support. And so this concept of a good death being at home sort of disintegrates, then, if is culturally a taboo for someone to die at home or the patient feels that this is a burden that their loved one just cannot do at this point because they're working and there's just one person working at home and therefore, they want to be some other place, be in the hospital or in the nursing home. So, I think that the care unit, to me, determines what is a reasonable course of action, as opposed to the individual by themselves, which is very different I think from when you and I are healthy and our choices are our choices. I don't know what you guys think about that.
Lynn: Well I have a question, this is all ... this is all really complicated. I'm looking at the figure, there's a lot of words and arrows and there's context and patients, and families and we talked a lot about trainees in the beginning, if we take away this concept that there is a good death, are we really expecting people to suddenly absorb all this complexity and take care of these really complicated patients?
VJ: I'd say, Lynn, that actually why the diagrams and the research might be complicated, to me it all comes down to something very simple. It's what matters to you. Who is in your life, who's providing care for you and for the doctors to know that, that social history that was recently on Twitter, that little meme that talked about the death of the physical exam. I think that the social history, the physical exam, the being at the bedside just, it's again, back to the basics and it's just the very simple stuff. We jump to the PET scan and the MRI and I think in that rush we sort of lose the very basic things. So to me, it's not at all complex. It's just very ... actually it's on the other end, it's very simple
Eric: And I'd add to that to say that, I'm not saying that physicians or trainees should abandon their moral responsibility to guide patients toward care that aligns with their goals and their values. And that often times patients may, unintentionally often, because they're on this treadmill of medicalization, believe they have to follow a pathway of care that includes highly intensive, aggressive measures, tests, treatments. And that we actually, we do have a moral responsibility to say, "hey, I worry about where that will lead, you said that, it was important to you to be with your family members, to be able to interact with them as much as possible, to get home, to work in your garden. Those things are what matter to you. Having this test, having this treatment, they don't really align with those goals”. So I think we do have a responsibility but it's a more nuanced responsibility.
And I agree with VJ, a lot of this is re-training people to be less like, oh you have to ask about each of these individual domains to actually thinking about it, you need to be more like a taxi driver or a barber who will just ask you questions like, so who are you? So where are you from? So what do you like to do? What's important to you?
Eric: Okay, so there's a lot of talk in the field of palliative care and in geriatrics of measuring what matters. There's actually a white paper on measuring what matters in palliative care. I'm hearing that the concept of the good death as a monolithic thing is not something we should be aiming for. What's the opposite of monolithic ... polylithic, is that a thing?
Alex: I don't know.
VJ: That sounds like a new religion there.
Eric: Polylithic good deaths. Do we have to throw the whole concept away because what I'm hearing is that there is good deaths but it's individualized. And how, is there a way to measure that? That we're doing a good job in following people's values.
VJ: I think before going into measurement, I feel like we need to think a little bit more about the process. And to me, going back and layering on what Alex was talking about, it's going back to the basics and practicing not just high-tech medicine but also concurrently high-touch medicine where you know who you're treating. And then this other, the moral obligation and the ethical obligation that Alex was talking about. To me, if I don't have that ethical responsibility to my patient, that's the day I'll get replaced by a computer algorithm, right. And so, to me, it's really important to separate out the options that patients have available to them. And separate the options from the opinion that we have. What is our expert opinion based on, clinical practice and conferring with other colleagues and people come to us for our expertise. So if we withhold expertise and let them do their own thing in an unformed fashion, I don't think you're doing anyone any favors. But I'm curious to see what you guys think about that.
Eric: Well I mean, I think that's great. Medicine, though, is ... in palliative care, we're moving more and more towards measuring things so if it's high-touch, next week there'll be a quality metric on how many times I touched the patient. Be constantly touching them.
VJ: Hashtag MeToo.
Alex: Let me say this, I think the holy grail that... from putting on the researcher hat. And the research community in palliative care is developing a metric for goal-aligned care. We don't have this metric. We don't know how to develop it. We don't know how to assess it. But I think that's what everybody's after because at its heart, right, as Diane Meyer's says, palliative care is about lining treatment with goals. But how do you measure that? I think that's a challenge for our research community at this time. But you can see how that goal is very individualized.
Eric: I'm just going to go back to the article, sounds like the UK is a little bit ahead. Even if the metric of preferred place of death may be suboptimal because it's just one thing and I think we can argue about preferred, in the context of their care and everything else, but at least it's something that we can see, is the care aligning with their preferences?
VJ: I'd say that it would be hard to compare UK with US because of the health care system being so different. So a preferred place of death might make a lot of sense where they have universal health care whereas, though we have the affordable care act, there is much more work that needs to be done here, so it's very easy to ask patients what their preferred place is but it may not always be feasible. For example, many patients will tell you when they are, especially when they are of the young old, right, from 65-74, they'll be like, "I never ever, ever want to be in a nursing home". But then we know that reality is not always that easy. So in one sense, unless until we have healthcare systems in place and we want people to be able to die at home, how are we going to support them? Where is the workforce that is claimed to be able to do that? That's a whole separate issue and without that, it's almost unfair to compare ourselves to the UK in the sense that we don't have that infrastructure, the way seem to do.
Eric: Well I was actually shocked in your article that more people in England die in the hospital and die in nursing home ... more people die at hospitals, not in nursing homes than in the US. What's going on there?
VJ: Alex and I had the "ah-ha" moment, that was exactly right so we actually reached out to Christian and Jane and asked, "is this really true?". So, Alex, if you want to talk a little bit about what you did after that?
Alex: That’s absolutely right. We were surprised about that too and they said, no, this information is correct. There are a high proportion of people who are dying in hospitals in the UK and I think that's part of the driving factor by making preferred place of death a quality metric because so many people prefer to die at home. But as we've said earlier, they may have other priorities that are higher. The system is aware that deaths at home are less expensive than deaths in the hospital.
VJ: I think you put your finger on the most important point here, Alex, in the sense that the elephant in the room is, what is the cost, right, of all these procedures? The cost of providing care at the bedside, the home health aide cost and who is going to foot that bill. Because we look at ... every year, now you have this report that comes out saying the health care costs are escalating and so there is this collective national anxiety of who's going to pay the bill. And listen, until we take a good hard look at where's all this money going, and where should we redirect it in a way that we can provide preference sensitive care, I think it'll be hard to solve it. You know we could think about metrics but unless there's a system change, what we measure is going to keep telling us that what we are doing is not exactly ideal.
Eric: Yeah, the last thing I have, just that I want to hear your opinion about, is this like the good death also seems like, to me, is a concept rooted around, ways people died 20 or 30 years ago. Where death was rather quick versus now where, we have an aging population, where multi-morbidity plays a larger role. Where neurodegenerative diseases like dementia, where people ... the process of dying is no longer over days or weeks, or even months, it may be over years. And just focusing on one thing, where someone died, misses the whole point. Like Joan Teno's work on how the hospital, our medical system just churns people through. We can get the home but they may only be home for like three days. So, I just want to hear your opinions on that.
VJ: Two comments. One is to think about, when does dying begin? Right, what does that mean? When is that process for a given patient and are we prolonging life with quality or are we prolonging the dying process and then bringing the patient into that. So, that's one aspect of it. And then, the work that MedPack is doing with post acute care, looking at all the aspects of on all the organizations that provide care, so when hospitals discharge patients quicker and sicker, where do they go and making everyone sort of accountable, I think that's a great step in the right direction.
Alex: Yeah, and just to build on that ... I think actually, the Age and Aging editorial does an even better job than we do at hammering on this point, that the demographics of dying and the end of life have changed. And the system, as you said, is antiquated and is constrained around this old sort of dying trajectory of cancer. People have an acute illness and die. But, it is not, it is not set up for older adults with multi-morbidity, with frailty, with disability, with dementia, cognitive impairment who are experiencing a much more prolonged trajectory of symptoms, of suffering, of need for assistance with daily activities. And that we need a massive reorganization of services to deliver palliative care to the population that needs it most and our systems, as they're currently set up, for providing care to those patients are wholly inadequate.
Lynn: I'm still thinking about the trainees.
VJ: Someone has to Lynn.
Lynn: I'm thinking about it because I think they're the ones who end up feeling this tremendous stress of our system that can't deliver the things that they really want for their patients. And I worry, a little bit, that if we sort of take away this idea that there can be a good death, that they'd need more concrete guidance. The people who are doing the front line care, at least in the academic hospitals, need to have a little more simplicity and sort of, what to be focusing on for their patients.
An example being, an intern can have a patient who is on "comfort care" in the hospital and they can really easily know how to avoid tests and interventions for that person. But I observe them really struggling with the patient who might be in the hospital and have frailty and ADL, need for ADL support and maybe they have pneumonia and they want to try to get through it but they don't want you to do too much to them. Keep them as comfortable as you can doctor while they're here. People really struggle with those in between situations where, in fact, the preferences are really personalized and unique. And I find that that's really hard for learners.
Alex: Well, I'll respond by saying ... I think med students are capable of tremendous complexity and-
Lynn: I'm not saying… they're simple minded.
Alex: But I think our system has trained them to appreciate complexity in immunology. Complexity in neural function and cellular pathways. But we haven't done a good enough job of teaching them the complexity of social interactions, individual preferences and how to communicate with patients in order to elicit those goals, values, and preferences to align treatment with those goals. And how to align treatment when those goals ... when it's complex. When the focus is on preserving function, not preserving life at all costs or preserving comfort at all for all costs.
Eric: Well said.
VJ: Yeah really well said. I would add to that and say, I mean Lynn I think you raise a really good point in how does one teach this in a way that people are not really confused. And how do you teach this to a medical student who is taking care of a patient in the medicine wards for the first time. To me, it's a zoom in, zoom out approach. I think we do really well with zooming in. You know, chase the pathology, get the blood cultures. Give the right antibiotic, look at the map and send the patient to the ICU.
We do really well with zoom in and intensity. But I think what we don't teach as much is the zoom out and put this patient in the context of their life trajectory. For example, things like, how old were your parents when they died? Who do you know in your family who has lived beyond a certain age. Some very simple questions that will allow us to do some prognostication and then be able to say okay, for this particular episode we will zoom in. But then I also want you to give me a zoom out plan in terms of what you want to do and when there's conflict between the zoom in and zoom out, that's where the uncertainty is. So, I don't know if that answers your question at all a little bit, but ... and I'm glad to redo this if I need to Eric, but tell me if that makes sense.
Eric: We never edit any of our podcasts.
Alex: Yeah what are you talking about?
Eric: Well, with that VJ, I just want to thank you and Alex for being on this podcast.
Alex: Thank you VJ.
Eric: As well as the authors of the Age and Aging paper, Christian Pollack and Jane Seymour and my co-host today Lynn Flint.
Alex: Thank you Lynn.
Lynn: Thank you.
VJ: Thank you.
Eric: Alex, do you want to send us off with a little song?
Alex: Sure thing. [Singing]
Alex: Alright, that’s enough of that.
Eric: Well, I want to thank all our listeners for joining us on the GeriPal podcast. This podcast is coming out during the American Academy of Hospice Palliative Medicine, AAHPM, HPNA and SWHPN Meeting in Boston. So we all look forward to seeing everybody and on Thursday, if you're in Boston, we have our annual Pali-Med-GeriPal party that starts at 9 o'clock. You can hashtag HPM party to see where we are at.
Alex: Bye folks.