Name: Brainstorm Health 2024: A Better End of Life
Uploaded: 2024-05-22
Duration: 17 min 25 s
Description: Lisa Pahl, Licensed Clinical Social Worker; Co-creator, The Death Deck Dr. Shoshana Ungerleider, Founder, End Well; Host and Producer, TED Health Darnell Lamont Walker, Death Doula; Filmmaker; Emmy-nominated Children’s Television Writer Moderator: Jennifer Fields, FORTUNE

Lisa Pahl, Licensed Clinical Social Worker; Co-creator, The Death Deck Dr. Shoshana Ungerleider, Founder, End Well; Host and Producer, TED Health Darnell Lamont Walker, Death Doula; Filmmaker; Emmy-nominated Children’s Television Writer Moderator: Jennifer Fields, FORTUNE

Brainstorm Health 2024: A Better End of Life

Conferences

Lisa Pahl, The Death Deck, Dr. Shoshana Ungerleider, End Well; TED Health Darnell Lamont Walker, Death Doula; Emmy-nominated Children’s Television Writer, Jennifer Fields, FORTUNE

Doctor Anger Leer. I wanna start with you. We're talking about transforming the way that we talk about death. But can you talk a little bit about what it's like to die in America today? Yeah, thank you, Jennifer. You know, I would go as far to say uh that dying in America today is a public health crisis. Um 80% of people wish to die at home, around 30% actually do. The rest are dying in hospitals uh in other institutions, 60% of people are are dying in pain. Um Our health care system um favors aggressive invasive treatment um for people of all ages and all medical conditions even if it won't help them. Um And this is very expensive care and how it plays out for people is it creates a lot of needless suffering for patients and their families in and around the end of life. And we could be doing a whole lot more to encourage upstream conversation so that the care that people get is care that they really want. They really understand. I think truly honors the life that they've lived. So a lot of the work that we do end well is trying to change that cultural conversation. We know that um doctors in general really fear death. Um How can we allow uh more conversation about mortality to let us all live better every day? Um How can we create interdisciplinary solutions so that uh dying? Uh so that caregiving, so that grief is a little less hard for people. And then the third thing that we really focus on is trying to uh shift media portrayal of death and dying, which we know on film and television is inaccurate to try to include things like medical aid and dying to tell more nuanced stories of patient centered care around end of life. The way that things really should be psychedelic assisted therapy, death duel is all the things that hopefully we'll get to talk about today. And so I, I know that we can be doing a lot better and turn out you are a Du Doas. And when we think about doulas, we think about um someone who's assisting at the birth of a child. Um Can you tell us a little bit about what you do? Yeah, absolutely. I, you know, just talking about birth, everyone knows what a birth duel is. And so, you know, as a, as a joke, usually when people ask, I say well, birth doas bring them in, I take them out um which essentially is what it is. But I'm there as a support. Um I'm there to make sure they get the good death, the death they want. Um you know, everyone wants to die with dignity. I'm there to, to support that there, to support the families through grief. Um And just make sure that the person doesn't die alone. I, I started in this business because I didn't want people to die alone. And um I, I get to be there holding their hands through that process, advocating for them in the hospital in the medical system. Um And a lot of my work I do in uh black communities and so advocating in the medical system is a, is a huge part of the work. Um But all of that, it's a, it's a huge support system and sometimes there is no family. I get to be the family. I get to be the support, the advocates um and making sure that good death or as close to that um happens. And Lisa, you do a little bit of work in medical aid and dying and it's probably a topic that gets a lot of the focus of conversations around reframing death. But I'm hoping you can tell us a little bit about what it actually is and what it means, what it looks like. Sure. So I work in hospice as a social worker and in that space, I help people similar to Darnell. Um I'm part of the interdisciplinary team and sometimes we also involve Doulos as part of that. Um And through my work supporting people. What I witness are these beautiful loving deaths. And then I also witness a lot of pain and suffering and fear and anxiety about what's to come. And so in 11 regions or 10 states and DC, uh medical aid and dying is legal. And what that means is a person who is terminally ill has six months or less to live is competent to make their own decisions and can ingest the medication themselves. They are allowed to control the matter and time of their death. And I've had the privilege of attending a lot of those deaths. And what's really beautiful about those experiences is that we're all talking about the fact that the person is dying. And for me, that's what I see as lacking the most in our culture is we're just not talking about it. And when someone talks about, even if they're exploring the option of medical aid and dying, it means we're talking about what they want in their death, what they want in their life. And a third of people who obtain the prescription, they don't even take it. And so we know that people get relief and reduction of anxiety when they just have access to the medication. Doctor Ar sorry, Doctor Unger Leiter, you mentioned uh just a moment ago, psychedelics that I know that there's been a lot of innovation around um the other uses for psychedelics besides um recreation. Can you talk a little bit about what you were thinking, this is gonna bring to the end of life experience. Well, I can certainly tell you what I hope will happen. Um I think it's important to set the stage in that. Uh currently uh psychedelics are not legal except for two states, Oregon and Colorado. Uh We do expect sometime in the next 2012 to 24 months that FDA will uh legalize MD MA, which is also known as ecstasy um for PTSD, but currently only those two states it's legal. Um But I will say that, you know, for next now, 60 years, we have really solid data showing that people facing the end of their lives, often, not always, but, but pretty often have existential distress when they become more proximate to the end of their lives. And in medicine, we don't really have good tools for helping people through that. The medicines that we do have. Benzodiazepines, opiates really blunt the senses and don't allow people to live fully until they die. And so the idea with psychedelics and what the data has shown that, for example, one treatment uh with a trained therapist um of psilocybin, um which is the active component in magic mushrooms um has a very long lasting effect up to six months of relief of some of that dread and anxiety. Uh Many people who've gone through this experience have said that it's the most powerful day and most meaningful experience of their lives. So there is something that happens as a result of this medicine, of the intention setting of the integration therapy that happens afterwards, which is also a really big part of it. It's not just popping medicine and then tripping, it's, you know, much, much more um and done in a very rigorous clinical and at least in the clinical trials. Um So I think there is promise and I hope that we as a health care system, as a society see this as something uh that's really important for everyone to get access to. In addition to all the other indications for mental health for which psychedelics are shown to be safe and effective. I should have also mentioned that the safety and efficacy piece are there as well for dying people? Um I'm gonna look out for questions if anyone has anything, just raise your hand and Mike will come to you. Um But first Darnell, I want to ask, what is the impact of your work on the families of people who are dying? Does it impact their mental health? Does it impact their grief? What have you seen? Yeah, absolutely. Um One of the first things I do when I, when I come to a client is how they want to die. Um And this is a question most family members don't ask the person who's actively dying. Um So it, it gives them a sense of, oh, it helps ease that. Uh that question that they were all that they were afraid to ask. Um, it lightens the grief. It doesn't get rid of the grief. You know, we can't cure grief. Grief is gonna happen. Um, but it lightens the grief when they know when they, when they questions that they had, when those questions are answered. And I'm able to help facilitate that when I'm able to help facilitate closure on, um, so many levels able to help them in the me, uh you know, talk to doctors um make advanced directives, you know, uh figure out who the proxy is gonna be. These are things that family, you know, a lot of times when someone is diagnosed, people don't know what they need right away. And so I'm there to say, OK, this is everything you need. And so it, it takes a huge weight off of their shoulder. Um and it, you know, I, I don't mind, I'm sorry, I don't mind taking that and, and saying, listen, this is what we have to do. Um when you have time, this is what we have to do. And then I'm, I'm a writer full time. Um and I'm, I'm able to bring that into my work as a death dealer and say, listen, let's tell your story. And so then when the person dies, we have all of these things that some people don't get, you know, in the end, um I'm able to craft, you know, this is what this is what I wanted as a as a kid. These were my favorite memories. This is uh these were my best friends, whatever that is, uh which also comes with the death, the death deck, which is an amazing tool um that I, you know, I able to use as well with some clients. And um so yeah, it, it helps ease that pain and the suffering for the families. Also, I want to turn to the audience. Does anyone have a question? We have it right here. I would just ask that you keep your questions brief and focused and definitely have a question in there. Thank you, Seita Finney with Bayer Consumer Health. Um This is probably best directed to Darnell and purely selfish question for all of us with aging parents, which is probably many of us in the room. What is the best way to have the conversation about? How would you like to die before it's an imminent event? It's a thing. Yeah. Um the siblings to uh go in uh a lot of people don't, you know, to be an effective listener. I, I think, you know, we, we say it but all of us, we aren't, we aren't bad, you know, and to just go in and listen and, and ask the question, I, I come straight out and ask, I come into the room and I just say, how do you want to die? And you know, some people are a little shaky on that at first, but it will start the conversation and, you know, if that's the one they, they don't want to answer, then there may be a softer one that they'll introduce and say, well, I don't know. But this, you know, um, so just go in and just say, listen, I'm, I'm here to listen or talk about you, you know, go in and say, well, this is what I want. This is how I wanna die. And then as you're talking about it, they'll see, you know, it may soften them up to the conversation as well. Can I, can I add a couple of things? Um This is one of my favorite topics is how to have these difficult conversations. And so, you know, we can use media as Sohana was saying, we, there are films, there are podcasts, there is some great storytelling that I was even, you know, part of to be able to use those moments in the film. You know, my mom and I watched this is us. And so, you know, after the episode where they're talking about the advanced directive, I called her up and she had a lot of thoughts and so we have to be creative. Um And then I, I created a game called The Death Deck to help people have these conversations as well. Um So there's a lot of tools out there and um I think we just have to be brave and willing and less denial about the fact that we're all gonna die. And these don't have to be like sad, scary conversations either. It can be an intense set of subjects, especially if the person is already ill. Um But it's really a way if you think about it of like getting to know your loved one better. So approach it with that, that kind of love and curiosity of, I want to know more about you as a person and honor you throughout your life. This is such great advice. We have another question. My name is Tara Bain. I'm with the 100 top hospital program. Prior to doing that, I actually practiced as a nurse and was a hospice nurse and had the privilege of being with people um as they died, which is, it is a true privilege. I'm just curious, Darnell, how do you fit in with hospice? Like, are you totally separate? Because a lot of what you were describing is what I saw when I practiced as a hospice nurse. I think it's really cool what you're doing. I just kind of curious how that all fits. No, absolutely. I, you know, I, I've worked not for a hospice but I've been in hospice there. Uh clients who will call who are in hospice and honestly, the work that I do, I've seen hospice workers do hospice nurses. I've seen people who don't even know what death dealers are. I, I started in this work because my grandmother was a caretaker. She's never heard the term death dealer, but she did everything that I've been doing. You know, I think we've all done the work on some level. Um, but being in the hospice, I, I couldn't tell you what the difference is between what I do and what so many people in the hospice, uh, in, in hospice do. It's an amazing, it is an amazing thing to see. Um, and I, I think, like I said, I think we've all done the work. We've all been there for someone. We've all held someone's hand, we've all held space for someone. Um, you know, even just going and taking the plate over to a sick neighbor, you know, whatever that is. I think we've all done it. We have one more question over here. Hi, I'm a Aris Lazin with Stanford medicine. Um, really important topic that you're addressing today. One of the things I've been thinking about is, you know, knowing the loneliness epidemic that's currently, you know, that we're all dealing with the United States. How does that play in sort of end of life conversations or decision making? Knowing that often people who are at that stage are hopefully counting on family networks and others to support them through something like this. How are you kind of thinking about that challenge? Mhm. I mean, it's, it is a huge challenge, right? We know that most, you know, family members, younger family members don't live anywhere near, you know, their elders. Um And so thinking about who will, I think the question as well? Like who will care for you in those final, you know, days, weeks, moments of life. Um I don't know that we have, you know, major solutions. I think this is something that we need to be talking about as society, right? So how we care for people through illness and through death is how we really should be measuring ourselves as, as a, as a society, we need to do better. Um I do think that we'd be remiss to not talk about the field of palliative care in general. Such that, you know, if someone is in the hospital, I know, you know, this um you know, having a team inclusive of a social worker, physic and a nurse um and a case manager thinking about these bigger questions about the, the logistics and the practicalities of care. But in reality, this is uh a major one and I think, you know, the the field of death doulas while it's been around for, you know, probably thousands, right? Since the beginning of time, it's now called death doula. They are filling a need um filling a gap where I, I just lost my father this last year. Um you know, as somebody who's an expert in this space, I was texting a death Doula friend of mine to get advice because I myself you know, wasn't even well as well equipped as I wanted to be um caring for my father who was dying. So there, there's there are many, many gaps. Um isolation and loneliness uh is, is a huge uh part of that conversation. And I think we also have to just be educating people more about hospice and palliative care and end of life op options. Because uh hospice and palliative care do include that social worker who is skilled at finding resources and helping people with caregiving issues, enlisting the help of friends and family um referrals for death to us when that's appropriate too. So really the education to let people know that these services are available um I think is the most important thing we can be doing. Turn on. Do you have anything to add? Um No, II I would just like to say, I think it's very important you brought up just having those conversations, like those difficult conversations. I think that's what's gonna uh drive us a little bit further and um and really find out, you know, like, yeah, we aren't that close to some people but um having those conversations, you know, how, where do you wanna be? Do you wanna be here? Uh How do you wanna die? You know, um is a great way into a lot of that. A lot of the questions you all may have uh can be answered by just asking that that first question. Uh how do you wanna die and just not being afraid of it. I'm not running from it. And I think those conversations are what give us confidence to make decisions for our family members too. You know, because people are really scared to make decisions on behalf of their family member. And if you have these conversations, you can feel more confident in doing. So. Thank you so much. You really are contributing to a, a big conversation that people are having already, but you're really working so hard to change the stigma around that. So I thank you so much. Thank you for your being here and for this conversation. Thank you.