UCL Health of the Public


Dignity, decency and dying - Transcript


Xand Van Tulleken, Libby Sallnow, Asfan Bhadelia, Rochelle Burgess


Xand Van Tulleken  00:00

Hello and welcome to season 2 of public health disrupted with me Xand Van Tulleken…


Rochelle Burgess  00:05

…and me Rochelle Burgess.  Xand is a doctor, writer & TV presenter, and I’m a community health psychologist and Associate Professor at the UCL Institute for Global Health.


Xand Van Tulleken  00:14

This podcast is about public health, but more importantly, it’s about the systems that need disrupting to make public health better. Join us each month as we challenge the status quo of the public health field, asking what needs to change, why and how to get there.


Rochelle Burgess  00:29

And in today's episode, we're talking about the big stuff. I don't think there's anything bigger than it. We're talking about death and dying. And this is something I've been thinking about a lot the past few months, my father passed away fairly recently, and it's been a difficult time for us in our families, we sort of come to grips with it. And so I'm really excited and also trepidatious sort of going into the episode today, you know, because of how big something like death is, but also very much inseparable from life. We're examining death and dying from the perspective of public health getting philosophical as we tackled the big question, Should we prioritise quality of life over length of life


Xand Van Tulleken  01:10

as with so many things in public health, this is this is personal and public and the sort of boundaries between that will be really interesting to discuss and I think you're going to be in very safe hands because Today's guests are amazing. Firstly we have Afsan Bhadelia. Afsan is a Senior Research Associate in the Department of Global Health and Population at the Harvard T.H. Chan School of Public Health. She’s a Fulbright Scholar and Visiting Faculty at the University of the West Indies, Cave Hill, and a Visiting Scholar at the University of Miami Institute for Advanced Study of the Americas. Afsan is a health systems and disparities researcher – what does all this mean I hear you ask! We’ll hear more on this shortly from Afsan herself but loosely it relates to applying complex systems theory and metrics science to examine social and structural determinants of health inequities. These inequalities could be related to gender for example, and chronic diseases like cancer. Afsan serves on multiple Lancet Commissions, including the Lancet Commission on the Value of Death, and she’s previously co-Chaired the Taskforce on Women and Non-Communicable Diseases.


Rochelle Burgess  02:24

We’re also joined by Dr Libby Sallnow. Libby is a palliative medicine consultant with Central and North West London NHS Foundation Trust. She’s also an honorary senior lecturer at: St Christopher's Hospice and the UCL Marie Curie Palliative Care Research Department. Libby has 20 years’ experience shaping the fields of new public health approaches to end-of-life care, compassionate communities, and social approaches to death, dying and loss, not just in the UK but all over the world. Libby has written extensively on this topic, having published over 25 articles and book chapters on death and dying, and she co-edited the book "International perspectives on public health and palliative care" in 2011. Most recently, Libby is also the first author of the new Lancet Commission on the Value of death: bringing death back into life (2022).


Xand Van Tulleken  03:13

also say that Libby is almost my next door neighbour, which is very nice. And that's how I got I got a sneak preview of the Lancet Commission on the value of death, which really is remarkable. And in those sort of huge bios, we've just done a both our guests, you know, this is a deeply meaningful, philosophical, complex topic. And that really comes across in their writing. Asfan you're coming at this topic, from a research standpoint, can you sort of give us an overview of how you begin to think about the research areas you want to look at when it comes to death and dying?


Asfan Bhadelia  03:45

Thank you Xand and Rochelle, I'm glad to be here. And it's an it's a big question death is so personal, and it's so complex. And what we've presented in the report is that death systems exist. And these are these interactions or arrangements in any society that impact how people experience the dying, and death. And so it's the collection of experiences and outcomes that vary by the culture and community, which then assigns different meanings to death. A lot of what I work on is trying to understand the complexity of systems and in this context, the death system, and how we might have appropriate measures that help us prioritise in a way that is reflective of the social values around death and dying.


Xand Van Tulleken  04:27

These are things that because we're all facing this, well, not I was gonna say one way or another, but really, we're just all facing it. What is the death system?


Asfan Bhadelia  04:35

individuals is patients, caregivers and families, it's policymakers as community leaders. So it's all the different actors who are you know, in any part of life who we think that social systems we think about health system, and so it is also the different types of symbols and rituals that occur when we think about death and dying. It is how we organise, understand, regulate, manage death. As they know, it is what determines how people die and mourn. And like any sort of complex system that systems are dynamic, they evolve, they change over time. And the death experiences adapted based on the changes in culture, the conversations that are happening around death, when we're thinking about healthcare, what what are the different services that needs to be available to be responsive as a death system is evolving? What is the data that we need? If we are to make sure that we have people centred health systems? How are we collecting those and acknowledging the different voices that are part of the death system, and the experiences that people have people come from various different perspectives, and as I mentioned, do cultures and different things, symbols and literals, like I mentioned that, that I think, a determine what is considered a good debt or bad death


Xand Van Tulleken  05:47

So when we think of a health system, that same level of complexity would apply to a death system, maybe even more, so. That's amazing. Exactly.


Rochelle Burgess  05:55

I mean, that's so fascinating, and seems also so, so logical, but I've never thought of it that way. You know, I've had sort of a background and training in like, anthropology and ethnography kind of thing, right? And so this idea of ritual is, you know, like, the meat of it, isn't it like of life is very much about ritual. And, but in a weird way, it was always felt like it, that sort of ritual happen separate of the health system? And, of course, it shouldn't be. And I guess, I wonder if sort of thinking about my experience with palliative care. So I want to turn to you now, Libby, you've been working in sort of palliative care for two decades? What are your thoughts on that feeling of that a false separation? Am I totally getting out of No? Or is that does that feel right to you,


Libby Sallnow  06:38

you're on the money, Rochelle. And I think that's no surprise that you're, you know, you've been thinking about these bigger issues from a different angle, you're not death and dying, but thinking about ritual, about community about connection, belonging, loss, love, you know, all of these things. It's how we experience life. And it's so interesting thinking about how public the public health role of this because often, you know, love, intimacy, life connection, relationships, you know, family, friends, community religion don't seem to come under the gaze of public health, often, we think they're kind of separate, we do health, in buildings with professionals with very clear boundaries, and hierarchies. And then the rest of the stuff is out there. But what we absolutely know is all about the role that communities relationships, connection, have on our physical health, on our mental health on how long we live on. And similarly, where we die, how we die, what we die off how our families experienced that death, how they take that bereavement on the sense they make of that the legacy we leave, all of that is intimately connected. And one of the problems is that for too long, as you said, this has been this kind of false separation like this is where you get the morphine or the hospital bed, or the kind of review of your nausea and your kind of decision about where you'd like your care. And here is where the rest of this stuff happens to ritual, the meaning making and actually, as human beings, we could we deal with this all together. And so that's why we and many other thinkers in kind of the end of life or the death systems field, the death space have been looking at how we bring these models together. And so compassionate communities and new public health approaches, these are kind of some of the terms that have come out as you've tried to, to kind of bring these two separate worlds together. And we know that how people experience a death of a close person of a loved one or a family member or friend is with them forever. You know, old models of bereavement are around, right you complete your grief work, you kind of get on with it, and then you get back to your normal life. And life is never the same after you lose someone close. And that's part of our human condition. And the grief work is really making sense of that and bringing that person into our life going future to the future and making sense of it. And actually having the kind of false separation doesn't help with that work. You know, it's a cycle of how people live, how people die, how people grieve. It all feeds into this, how we are as people, so we're trying really hard to bring that back in.


Rochelle Burgess  09:09

I wonder if you could talk a bit more about what is a compassionate community.


Libby Sallnow  09:13

So compassionate communities are essentially kind of initiatives, catalysts, spaces created to allow communities to respond to death, dying in and grief in their own way. So it's saying that everyone has a responsibility for this death dying happen to all of us at different times. And we all have a role to play beyond just palliative care or health care professionals. So for some compassionate communities, they started a bit like the mutual aid groups started in COVID, where groups of people on the streets or in an apartment block or related to a church or a mosque come together and say, Okay, we've got a support people around us who are grieving who are caring who are dying, and they might approach hospice or somewhere else to get some support around the how, what and when and how to support that. But essentially, they're groups Taking action locally to have conversations make death dying and bereavement less of a stigma. Often people don't know how to even start a conversation with someone who's bereaved. Sometimes it's direct care supporting people who are looking after people who are dying, caring for them, doing rotors of food and shopping and connection. And other times. It's about creating spaces in that community saying death is something that we affects us all. And by not talking about it, it makes it harder.


Xand Van Tulleken  10:25

The podcast, I guess, is called Public Health disrupted. And I think one of the things we're both very interested in is the extent to which the traditional models of public health but that sort of very biomedical Western approach, the sort of highly rationalised cost effective mindset is at the root of a lot of problems. And to what extent is sort of public health and and modern Western medicine, causing some of the difficulties that you're you're trying to solve with this approach.


Libby Sallnow  10:54

Yeah, and it's actually kind of paradoxically some of the the achievements and successes of public health and to some extent medicine, clinical medicine, they've achieved you know, great things over say the past 50 years specifically increases in life expectancy reduction in cubicle diseases, you know, life expectancy for and maternal mortality, under five mortality, these huge improvements have been made. And so it's increased life expectancy, this increased numbers of conditions that were previously been fatal people are being cured from, this kind of creates this, this kind of narrative that things are always curable, there's always a cure with obviously, death is not infinitely deferable with the allure of medicine and achievement and continual progress. The sense is actually that there will always be one more cure. And so when people actually reach a point where there is no cure, it's very, very hard. I often say that death and dying are a part of health and well being they are not a failure of health and well being. I think that's one of the challenges. So we've been almost a victim of our own success, but we have not looked at where things in death cannot be changed and pushed back inevitably. And it's not we did so. Asfan and I, when we were working on the commission, we looked across at different policy reports. So like, looking at healthy ageing, from you know, international organisations, national organisations, various different, you know, liver ageing, different conditions, no one mentioned death and dying, just it's not there in the policy narrative. It's not there in the community narrative. It's not there in a kind of health systems narrative, there where that where can people understand about it. And so this, one of the recommendations from our report was to end the silence in policies and narratives in the media on normal death, that being a part of life is somehow missing.


Xand Van Tulleken  12:38

Often we had patients, I remember when I was a junior doctor, they'd be saying to one of the senior doctors, you know, am I going to die? And my boss would go, yes. But not from this. But that strange thing, but there was almost in every one psyche is the idea that they might be actually able to avoid death completely. And the billionaires, the billionaires race to live forever, probably hasn't helped this as well, the sort of narrative that if you spend enough money,


Libby Sallnow  13:05

yeah, we made some explicit links with immortality and climate change and death and dying at the beginning of our report. And what we were trying to say is that with the, with the kind of quest for increased longevity, or in achieving immortality, which has got some pretty big backing, you know, this is these are some serious efforts around the world, to defeat death and control death is the same as this idea that actually we are not part of nature, we are in control of nature. And the same with climate change, we are not responsible to it we are part we are responsible. We are you know, we're in charge of it. And the same with with that, so we do some quite clear links between climate change, climate destruction, quest for immortality and our essential Denial of Death as part of life.


Rochelle Burgess  13:51

Denial is the most powerful of mechanisms, isn't it? You just take it and repeat it in every sphere of your life.


Libby Sallnow  13:58

Yeah, and he's having some really big effects. I mean, obviously, looking beyond the more focused on health care and outcomes than, say, climate change and immortality, but we looked a lot at overtreatment, there's been many, many reports, looking at overtreatment, in terms of you know, just even using antibiotics or unnecessary surgical interventions and the huge impact that it's having on individuals on healthcare economies, and particularly as we look towards universal health coverage, you know, there was a finite pool of resources, and we need to be really careful, you know, stupid those and make sure that they're achieving intervention they're meant to


Asfan Bhadelia  14:31

I want to pick up this idea that there's always one more thing that can be done. And we can't accept this idea of what what the end of life is that death is part of life. It's a natural part of life. And, you know, one thing that came up in the process of working on this report was in the US context, we don't usually use say the word die. We say someone passed away with these euphemisms. We can't have the difficult conversations about death. The idea that if someone dies You get two days off, and then you should be able to move on and be productive and move forward. Oftentimes the question is, what do we prioritise? Is it think about quality of life or prolonging life? And if we're to be truly disruptive, I think we need to ask how can we prioritise quality of life and prolonging life and avoiding premature death. We can't be in a world where millions around the world are dying in pain without access to opioids, when their suffering can be so easily relieved with low cost options, we shouldn't have to choose between those who are suffering needs to be relieved, because compared to, you know, lifelong interventions, it's I don't think that the idea how limited they truly are, is determined by the societal values that govern allocation of resources. So if we prioritise human suffering, if we prioritise issues of health justice or justice, overall, we can prioritise differently, I think we can expand to there's a greater allocation to health and national budget, we need to think very destructively in terms of how our decisions are made, how priority setting is conducted, who makes those decisions? And the metrics that we use? So are those metrics developed by experts? Are they develop by, you know, through community engagement through community partnership, and those metrics that are used by health policymakers, for example, or not. And so I think this is a big issue. Patients want their suffering to be leave, family members don't want to see their, you know, their loved ones die in pain. And so I think that we need a real disruption in our priority setting processes. I guess there's


Rochelle Burgess  16:35

so many things that pull out a lot of the, I suppose the angrier bits of my work, that are about sort of resisting systematic oppression, exclusion, injustice, that really you see in death, that those same inequities are reified. The people who have access to life saving treatments to the sort of the over medicalization of life, it means that many people, the same people, always the same people in the same parts of the world are denied access to good death or that term of a good death.


Libby Sallnow  17:13

You're absolutely right. And we use the social term. So the social determinants of death, that's just the same as the social determinants of health and well being that you know, how you live, how you die, how your the decisions you have been able to make the decisions that you've not been able to make all of those will influence how you die, how you care, for those who loved and how you grieve, and those in justices and inequalities are just as prevalent, and I see them every day even in my care in London. They exist everywhere.


Asfan Bhadelia  17:45

there's marginalisation of dying and grieving because of differentials in power, distribution of power and resources within that system is that unequal, you know, social, economic, environmental conditions in which people live and die, and it's discriminatory policies and practices that impact the death trajectory. And some of the occurs of marginalisation occurs at the intersection and coexistence of multiple identities that you know that shape our existence such as race, gender, sexuality, we have to take an intersectional approach or lens, to understand the realities that many communities we know different identities that further isolate them from a gender lens, widows, when their husband dies, there, they don't have access to proper your assets or restricted movement, certain cultural practices. And when we think about, you know, LGBTQ plus communities, if you're not even allowed to attend the funeral of your partner, and how you know, that can impact and relate to complex grief, when we think about health inequities. These are vast and worse, in fact, probably at the end of life when it's such a complex period of for the person experiencing death, and then the loved ones around them.


Rochelle Burgess  18:57

Yeah, I mean, that point about widows also is such an important one, and just really also shows you like the inseparability of death, from its contextual, political and social realities.


Libby Sallnow  19:10

And that's why it's so ridiculous to think that we could, could meet, not solve but even begin to address these challenges through a biomedical lens. Like they're just not experienced through that, you know, you need aspects of that, of course, but that can't be the totality of our response, death, dying, loss, caregiving grieving, you know, a meeting with a doctor or nurse or hospital bed, that just that just can't be the kind of totality of it and that's just seems so shocking. When you put it out like that. It seems ridiculous. Of course, we need more than that, but somehow that isn't happening. And that's where the compassionate communities movement, new public health approaches, kind of Death awareness movements, so many different really vibrant movements are happening around the world where communities are just saying this isn't okay. This is not something that can be solved by doctor, a nurse visiting even my home yet alone being seen in hospital, we're seeing across many communities in the UK, but also around the world that these traditions, knowledge skills around what to do when someone is grieving how to care for someone when someone's dying, they're being lost. And I see this a lot in my practice when I go to support people who are dying at home. And people often say to me, I have no idea how this works, like how does someone die? What actually happens? And what do I need to do? And I think it's again, coming back to the kind of unanticipated or unintended consequence of Public Health and Medicine improve improving our life expectancy, improving people's the curative conditions, because people haven't seen someone die then often till much later in life, whereas in previous generations, you would have seen young babies die, there would have been people dying at home. And we've also when people do die, now it's in hospital or in care homes. So even when people are dying in later age, people just aren't, it's not happening in a kind of familiar setting around them around their homes. So people say what actually happens without these kind of basic skills and knowledge, death is a very, very frightening event,


Rochelle Burgess  21:09

Asfan, yes, you're joining us from Barbados. Yeah, I always mess up Barbados, and Bermuda, because I'm Jamaican, and I only know about Jamaica. But you're joining us from Barbados, and it just made me sort of wonder, you know, your work is very much global. And sort of, and you mentioned ritual before, I sort of wondered if you could talk about sort of how these attitudes to, to death, and maybe this idea of a good death differ across the world, like, you know, I, I think very much about my father and his passing, and how, in Jamaican culture, we would have wanted something different, he died suddenly at home, so he died at home, but he died alone. And in we don't like that idea of aloneness in Jamaican culture, well, I would not have wanted him to die alone, like that. And so but you know, there are these ideas that shift and change all over the world, I just sort of wondered if you could tell us a bit about that.


Asfan Bhadelia  22:09

Of course thank you for sharing about your father. And what you mentioned, is, is very true. In different cultures, death can certain cultures, it can be a very private event. In others, it's much more community, right. It's about involving, and presence of different people. In others, you know, we think about information, disclosure, about death, even sharing someone's died, there is, you know, differences in whether it's a celebration of life and how people mourn, that varies, and it's quite complex, how that can be experienced as we think about multicultural societies and, and what you're permitted to practice also. And that makes it quite challenging, of course. And when we think about death, in very complex settings, right now, you know, there's a war in Ukraine, how death is occurring there, the lack or ability, lack of ability to have the appropriate rituals that accompany the move, we experienced the pandemic are still in the middle of it, and the inability for people to say goodbye to be near one another, the shocks to the system, the death system can have a huge impact. We have plenty of funding when we want to decide to have wars, but we don't have enough money for morphine


Libby Sallnow  23:15

Just to add in kind of the role that COVID Not wishing to get back to COVID. Again, you know, but I think the difference, and I think we're just only beginning to understand the impacts that that and other situations like Asfan's mentioned around conflict and humanitarian disasters are actually the kind of deaths systems are disrupted. So the normal patterns of support of coping of medical support of grieving, are entirely disrupted. And I think the impact of that on making sense of that grief, making sense of that loss, understanding how that person could have had care or, or was not able to have care, I think we're just beginning to feel the impact of that. And there's something about the collective nature of that to COVID. That has brought it home, I think, to people, but I think we're still in the in the point of making sense of what that means


Rochelle Burgess  24:01

you can't really have conversations about death without actually having conversations about politics. And I think in a way, perhaps I knew that, but it's very much the decisions were and not just sort of in conflict zones, where the politics are right in your face. But distribution of resources is deeply political. And I would almost prefer rather than to say, oh, social determinants I maybe it's a whole other podcast. I've got beef with that term now, because it sort of presents these determinants as if they're passive, like they just emerged one day as if they weren't purposely created by like people making decisions about where some people can live and where they can't live about what some people are paid and what they're not paid about why some life is valued and wildlife isn't. That is inherently political and about power. You'll never fix social determinants if we don't talk about the fact that they are politically determined. The sense


Xand Van Tulleken  24:53

I have from Libby and Asfan is that a good death is within our grasp, there are barriers, but it's not, you know, the Lie we tell about healthcare is that it's too expensive to give to everyone. But the inequality has to exist, which is absurd. But with death, a good death is not enormously expensive. The way that treatment of severe illness would be, I'd maybe that isn't true. But that's one thing that struck me. The other thing very quickly is that as a doctor, I feel like I've always thought of this yin and yang, this balance of going length of life versus quality of life. That's the decision. And that actually seems like a false dichotomy from what you're saying. In fact, it's not two sides of a coin. In fact, the same things that give you a shorter life and a worse quality of life or give you a worst quality of death. And all those same factors come into play.


Libby Sallnow  25:49

One of the challenging things a lot with the UK policy narrative around end of life care is that a lot of stuff is presented as a choice, when in fact, it's not a choice. And that comes back to a lot of what Rochelle was saying around the political structural determinants of the decisions. So you may say, I'd like to die at home. But if that isn't a possibility, because of the way the home in which you have, that may not be a place of safety, they may not be a place of refuge, there are many, many kinds of nuances when you look at choice. And I think the issue often that's wrong. And this is, again, another podcast around kind of consumerism and healthcare this sense that actually, it's ours to have so the idea that well, can you choose quality of life over a length of life? Is that a choice that actually in reality, healthcare systems are presenting to people, even in the UK, certainly not globally, that choice is not open to many people because of the structural determinants of how people live and how people die. And that's what we've got to remember is that death isn't as kind of separate add on, it's a part of life. So the healthcare decisions and the health outcomes that people are getting, we must consider how people are dying and caring and grieving within that it cannot be a separate add on. It's an it's part of the totality of life.


Asfan Bhadelia  27:03

Xand you mentioned, how expensive is a good death? Well, I think part of that is related to our perception of what what end of life care should look like, right. So if we have these fragmented death systems, where is really where death is more medical, rather than being a social event, we're not connecting to community intervention, we're not connecting to social systems, then, of course, we're not really taking account of all the different aspects that amount to a goods death, going back to this point on palliative care, and how affordable it is, for example, is, you know, we did this calculation around looking at Universal Health Coverage schemes, the traditional, you know, the the costing of them, the calculation is that if you were to provide an essential package of palliative care services, it would be $3 US dollars per capita, it is 3% of the cost of the UAC package is low cost. And so it really comes back to what we value what what, you know, how we prioritise. And Rochelle you bought up earlier, and i could not agree more. It's the power and privilege or lack thereof of many individuals to influence priority setting in a way that is truly reflective, and inclusive of you know, what people want at the end of life.


Xand Van Tulleken  28:14

As an aside, Asfan, you ended quite poignantly the last time saying there's always money for war, and it feels from what you're saying, there's always there's lots of money to kill people, but there isn't any money to allow them a good death sort of peculiar irony of the military industrial complex


Asfan Bhadelia  28:33

Death is political too!


Rochelle Burgess  28:34

I think it's a good thing to say again


Libby Sallnow  28:37

we've got to say, power, this has to come into this. And we there's a whole section in the report, actually, that we bring up the role of power in determining who dies, where they die, how they die, what they die off. And actually, palliative care is not talking about power, there's no way that that comes in. That's these are broader social discussions that need to be had on a higher level. And they're not at the moment. And obviously, war, humanitarian crises, bring some of these decisions around and discussions around health and support. But actually, we're not having discussions around power in death at the moment. But what I was just going to pick up on your point about a good deaths Xand before we before we move on, is that the solution doesn't only lie within the health care setting. So obviously, while we're looking at money to bring affordable intervention, such as pain relief for people who have pain as they die, you know, that is an absolutely no brainer. And as Asfan said, the figures are really shocking. They it does not cost much at all, it would not cost much at all to meet that need, which is one of the most shocking inequities that exists at the moment in terms of how easy it would be to bridge that global pain divide, as we name it, but it's not within the gift of policymakers nor of healthcare services to bring a good death for people. They have a massive part. They're a big part of the jigsaw. But there's so much more and that's the problem. We've got to be careful we don't think through into thinking the solutions will lie in more services. that, you know, excellent access to services isn't the absolute prerequisite. But that is just to allow people to have the community connections, to not be in pain to not be vomiting, to be in the right bed to look after their skin to have all of the right conversation. So they know what's happening. But that I always think of that's the platform in which good end of life care and a good death can be built on. But the next step is the real stuff, which is, you know, how can we make sense of this on a personal level? What are the conversations that need to happen? What do we need to say? What kind of legacy will they be left? How can the dying person support the people who are going to be left behind what important conversations can be said, as we so rightly come back to the kind of political structural social determinants of this without that platform, you can't even begin to have that conversation, you're in pain, and it's unrelieved. You're in a war conflict zone, you cannot have those conversations. So part of our job is to get all of that basis, that foundation, I think that platform, we've got to build that. But on that isn't the end. That's not the whole point of a good death. The whole point is that then enables people to have these meaningful conversations. And that's when I see in people's homes, deaths that families and communities would describe as good deaths. They take planning, they take discussions, they take really strong relationships. And I think that's the other con, the other kind of term, I think we need to think about relationships alongside power, you know, that's how things change. That's what mean things to people. That's what people remember. So you know, all of that needs to be in place as well. So it takes planning, it takes resources, it takes capital, in all its many senses. It takes experience and knowledge to know what's going to happen. There's so many pieces of that puzzle that are missing throughout the world. And that's what we hope to the Lancet Commission, we would bring together by using the idea of systems and a kind of, you know, broader sense of like, what do we need to get in place so that more people around the world can die a death that they would describe as good,


Asfan Bhadelia  31:47

yeah, and we need people power duct systems and bringing dignity, dignity, back to focus, which I think is so often forgotten. One thing that we haven't touched upon, and I should have mentioned this earlier, when we're discussing sort of the complexity of systems, it's it's not 100%. It's not just the healthcare system. We think that legal systems and laws around assisted dying, you know, all of this comes into play. It's a collection of all these and relationships, as you noted, Libby are critical and be able to foster and sustain the relationships that people want to have the interactions that people want to be able to have in their last moments of life and family members so that they can, you know, they can or don't experience complex grief, but linking back and it was of course, working in the healthcare context, or, you know, policy context, as well as is that there should be more linkage to know what the communities right that a system health system exists within, what are the community based resources that are available support groups, for example, that we can tap into a link and do they can refer to they're outside the healthcare system. And this often gets forgotten to


Libby Sallnow  32:48

actually often health systems are inadvertently or potentially undermining these relationships. And that so it's almost about it's not about doing more, it's actually health systems need to do less, which is definitely cheaper to step back in terms of looking at if they could do less in certain places and more and other than that's it's about repurposing that


Asfan Bhadelia  33:07

they can be integrated, that they're out, they exist outside the system, but they're just the death system overall, can be more integrated to know what's available. It's a transfer from one part of the system to the other, and that doesn't occur.


Libby Sallnow  33:19

And that's why a systems approach is so important to understand that it isn't about Yeah, healthcare stepping back, and communities taking over or you know, health care, just taking over these parts and community doing that part. It's about an integrated approach, understanding you need all of these different components to allow people to die well and to experience serious illness in the best way they can. And at the moment, there's just those relationships don't exist within the system I don't think there is even an awareness of all the different components that exist within a system, the healthcare teams knows that needs to know how to have conversations with the social network that surrounds people, for people who are lucky enough to have a social network around them, how can we not disempower? How can we not undermine what's going on here? What are you doing? How can we support? Where are the gaps, what works? What are you doing that works really well? How can we learn from you so that we help other communities and other people who are who don't have this around them to kind of try and set up some of this, and all of that dialogue, and that comes around risk, responsibility, power, hierarchy, structure, all of that stuff. It's just missing at the moment. And that is definitely one of the next steps that we need to take.


Asfan Bhadelia  34:20

I think death will not be televised. And this is, of course, a play on the words of the poem by Gil Scott Heron, the poet musician, you know, the original sense of the words being the revolution will not be televised. And this was used during the latter years of this alright, the United States. And since including, you know, the recent calls to action with the Black Lives movement, and the message is we can't be bystanders and won't get away with comfortably watching from our television screens or phone when social justice is unfolding. So death will not be televised because death occurs right now the sidelines has been primarily placed in the hands of healthcare professionals. And we have to be active participants in shaping and creating the death systems we want to experience from within our families and communities that the systemic levers that we can impact,


Xand Van Tulleken  35:03

the final question that we ask all the guests who come on is about, I think we sort of call it an artefact because it could be anything but something that disrupted your thinking, it could be a poem, it could be a piece of art, could be an object, it could be a moment in your life, but something that has disrupted your thinking and kind of taken you down down the road that you've gone down to, to the amazing work that you've you've described today. I will


Asfan Bhadelia  35:29

see now just two quick examples. I think Nina Simone was now you know, not only a musician, but also an activist who defied and disrupted and I consistently listen to her music, and her songs are about resistance, resilience, and there were political statements. And we've talked about how death is political. And she spoke truth to power and listening to her music is such a visceral experience that almost don't see up to your feet. And the other is arundhati roy, the writer and activist was an immense source of inspiration, her sharp imagery, you know, it's kept me sort of thinking, because she writes, so poetically, and you know, she's, of course writes fiction and nonfiction. But there's one quote that I think about from her that I've posted of it on my desk, there's really no such thing as a voiceless, there are only the deliberately silent or the preferably unheard. And I think that often guides my work in what I do.


Xand Van Tulleken  36:19

Thank you so much. That's extraordinary. Thank you.


Libby Sallnow  36:21

I hear that in your work Asfan, really powerful. And we see that everywhere, and I think that's the thing, and we see it, and it's not being picked up in in death and dying. That's yeah, I really hear that in the work you do Asfan. So my one is a is a poem that I came across when I was about 15. Like many things that kind of stayed with me and I have interpreted in different ways. And the impact it had on me, I think only has only become clearer, really in the past few years. But it's a poem called look closer, it was written in the 1960s. I found it in a GCSE textbook. And when I read it initially, I couldn't actually read it out loud without breaking down. It was such a poignant poem, it's a desperate plea to written to a nurse to be treated with dignity and to be treated as a person, not just an old body. And when I first found the poem, it said it had been found in a locker after this lady had died, and the nurse read it. And it is really a poem about life. And that death is a part of life. And that dignity must be, you know, really at the core of everything that we do, and treating people as people not as bodies. And I think it was actually then later attributed to a writer who published it at the time, but it's such a powerful one. And at 15, I kind of couldn't quite realise it couldn't quite understand the implication of what it meant. But I knew it captured, everything I felt was wrong with how health care systems were being delivered. And what I wanted to do with a career in health in medicine, and I thought for a long time about going into care of the elderly. And then I found palliative care, and this kind of sense of the humanity, the dignity is so fundamental to everything that I do. And if we lose sight of that, I think, you know, we lose everything, I've now realised, actually, as I've reflected on and it was really nice to get the chance to go back and read this poem again, and really reflect But similarly, I've had it in my books over the past years. And actually, I followed that thread through with my career and much like Asfan. I can hear that her influence is in her work that is even in her kind of metrics, highly complicated statistical work, I can see that kind of that drive. And this similarly drives me to see the human and everyone and the vulnerability of death and dying, is something that we cannot ignore. And this and other, you know, other experiences I've seen in my life really is a kind of inspires me to not give up and to keep driving, because we can change things. And actually, these are universal experiences. And his poem suggests, you know, this is nothing, there's nothing radical or different about this. It's just a, it's a very normal experience that we will all go through. We will all go through it different times. And it's up to us to change it



An give up you have not Libby because you have been the driving force behind all the work that we've been doing in leading us forward. So thank you for that.


Libby Sallnow  39:05

And we hope that the publication of this report will be a real kind of milestone and galvanising report getting these bigger discussions around the political, structural social determinants and alongside the kind of hyper personal side, which is what also death dying and grief brings out we all got personal experiences, which, you know, motivate us in different ways, but we've all got a stake in this death system.


Xand Van Tulleken  39:29

What an amazing note to end on Nina Simone, Arundhati Roy, and look closer, that is so extraordinary, that set of disrupting influences. Thank you v