Brainstorm Health 2024: A Better End of Life
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
Category
🤖
TechTranscript
00:00Dr. Ungerleider, I want to start with you.
00:02We're talking about transforming the way
00:04that we talk about death, but can you
00:06talk a little bit about what it's
00:08like to die in America today?
00:10Yeah, thanks, Jennifer.
00:12I would go as far to say that dying in America today
00:16is a public health crisis.
00:1980% of people wish to die at home.
00:21Around 30% actually do.
00:23The rest are dying in hospitals and other institutions.
00:2660% of people are dying in pain.
00:30Our health care system favors aggressive, invasive treatment
00:35for people of all ages and all medical conditions,
00:37even if it won't help them.
00:40And this is very expensive care.
00:42And how it plays out for people is
00:43it creates a lot of needless suffering
00:47for patients and their families in and around the end of life.
00:50And we could be doing a whole lot more
00:53to encourage upstream conversation
00:55so that the care that people get
00:57is care that they really want, they really understand,
01:01I think truly honors the life that they've lived.
01:03So a lot of the work that we do at End Well
01:05is trying to change that cultural conversation.
01:08We know that doctors, in general, really fear death.
01:13How can we allow more conversation about mortality
01:18to let us all live better every day?
01:21How can we create interdisciplinary solutions
01:23so that dying, so that caregiving, so that grief
01:27is a little less hard for people?
01:30And then the third thing that we really focus on
01:32is trying to shift media portrayal of death and dying,
01:36which we know on film and television
01:38is inaccurate, to try to include things like medical aid
01:42and dying, to tell more nuanced stories of patient-centered care
01:45around end of life the way that things really should be.
01:48Psychedelic-assisted therapy, death doulas,
01:50all the things that hopefully we'll get to talk about today.
01:53And so I know that we can be doing a lot better.
01:57And Darnell, you are a death doula.
01:59And when we think about doulas, we
02:00think about someone who's assisting
02:02at the birth of a child.
02:04Can you tell us a little bit about what you do?
02:06Yeah, absolutely.
02:07Just talking about birth, everyone
02:09knows what a birth doula is.
02:10And so as a joke, usually when people ask, I say, well,
02:13birth doulas bring the men.
02:15I take them out, which essentially is what it is.
02:18But I'm there as a support.
02:20I'm there to make sure they get the good death, the death they
02:23want.
02:25Everyone wants to die with dignity.
02:26I'm there to support that.
02:28There to support the families through grief.
02:31And just make sure that the person doesn't die alone.
02:34I started in this business because I
02:36didn't want people to die alone.
02:38And I get to be there holding their hand
02:41through that process, advocating for them
02:43in the hospital, in the medical system.
02:45And a lot of my work I do in black communities.
02:48And so advocating in the medical system
02:50is a huge part of the work.
02:53But all of that, it's a huge support system.
02:56And sometimes there is no family.
02:57So I get to be the family.
02:58I get to be the support, the advocate,
03:01and making sure that good death or as close to that happens.
03:07And Lisa, you do a little bit of work in medical aid in dying.
03:12And it's probably a topic that gets
03:14a lot of the focus of conversations
03:16around reframing death.
03:18But I'm hoping you can tell us a little bit
03:19about what it actually is and what
03:21it means, what it looks like.
03:23Sure.
03:24So I work in hospice as a social worker.
03:27And in that space, I help people similar to Darnell.
03:31I'm part of the interdisciplinary team.
03:33And sometimes we also involve death doers as part of that.
03:37And through my work supporting people,
03:40what I witness are these beautiful, loving deaths.
03:43And then I also witness a lot of pain and suffering and fear
03:49and anxiety about what's to come.
03:51And so in 11 regions or 10 states and DC,
03:58medical aid in dying is legal.
04:00And what that means is a person who is terminally ill,
04:04has six months or less to live, is
04:07competent to make their own decisions,
04:10and can ingest the medication themselves,
04:14they are allowed to control the matter and time of their death.
04:20And I've had the privilege of attending a lot of those deaths.
04:23And what's really beautiful about those experiences
04:27is that we're all talking about the fact
04:29that the person's dying.
04:31And for me, that's what I see as lacking
04:33the most in our culture is we're just not talking about it.
04:37And when someone talks about, even
04:38if they're exploring the option of medical aid in dying,
04:42it means we're talking about what
04:45they want in their death, what they want in their life.
04:49And a third of people who obtain the prescription,
04:53they don't even take it.
04:54And so we know that people get relief and reduction of anxiety
04:58when they just have access to the medication.
05:02Dr. Ungerleider, you mentioned just a moment ago psychedelics.
05:07And I know that there's been a lot of innovation
05:09around the other uses for psychedelics besides recreation.
05:13Can you talk a little bit about what
05:16you're thinking this is going to bring to the end of life
05:18experience?
05:19Well, I can certainly tell you what I hope will happen.
05:23I think it's important to set the stage in that currently,
05:26psychedelics are not legal except for two states, Oregon
05:29and Colorado.
05:30We do expect sometime in the next 12 to 24 months
05:34that FDA will legalize MDMA, which is also
05:39known as ecstasy, for PTSD.
05:42But currently, only those two states it's legal.
05:45But I will say that for now 60 years,
05:49we have really solid data showing
05:51that people facing the end of their lives
05:55often, not always, but pretty often
05:58have existential distress when they
06:00become more proximate to the end of their lives.
06:02And in medicine, we don't really
06:04have good tools for helping people through that.
06:07The medicines that we do have, benzodiazepines, opiates,
06:10really blunt the senses and don't allow people
06:13to live fully until they die.
06:16And so the idea with psychedelics
06:19and what the data has shown that, for example,
06:21one treatment with a trained therapist of psilocybin,
06:26which is the active component in magic mushrooms,
06:29has a very long-lasting effect, up to six months,
06:33of relief of some of that dread and anxiety.
06:37Many people who've gone through this experience
06:39have said that it's the most powerful day and most
06:42meaningful experience of their lives.
06:45So there is something that happens
06:46as a result of this medicine, of the intention setting,
06:50of the integration therapy that happens afterwards, which is
06:52also a really big part of it.
06:53It's not just popping medicine and then tripping.
06:56It's much, much more, and done in a very rigorous clinical
07:00environment, at least in the clinical trials.
07:03So I think there is promise.
07:04And I hope that we, as a health care system, as a society,
07:08see this as something that's really important for everyone
07:12to get access to, in addition to all the other indications
07:14for mental health for which psychedelics are shown
07:17to be safe and effective.
07:18I should have also mentioned that the safety and efficacy
07:20piece are there as well for dying people.
07:24I'm going to look out for questions.
07:26If anyone has anything, just raise your hand
07:28and a mic will come to you.
07:30But first, Darnell, I want to ask,
07:31what is the impact of your work on the families of people
07:35who are dying?
07:35Does it impact their mental health?
07:37Does it impact their grief?
07:38What have you seen?
07:39Yeah, absolutely.
07:40One of the first things I do when I come to a client
07:43is ask how they want to die.
07:45And this is a question most family members
07:47don't ask the person who's actively dying.
07:51So it gives them a sense of, oh, it
07:54helps ease that question that they were afraid to ask.
08:00It lightens the grief.
08:01It doesn't get rid of the grief.
08:03We can't cure grief.
08:04Grief is going to happen.
08:06But it lightens the grief when they know,
08:08when there are questions that they had,
08:11when those questions are answered,
08:12and I'm able to help facilitate that,
08:14when I'm able to help facilitate closure on so many levels,
08:18able to help them talk to doctors,
08:22make advanced directives, figure out
08:25who the proxy is going to be.
08:27These are things that family, a lot of times
08:29when someone is diagnosed, people
08:32don't know what they need right away.
08:33And so I'm there to say, OK, this is everything you need.
08:37And so it takes a huge weight off of their shoulder.
08:42And I don't mind taking that and saying, listen,
08:47this is what we have to do.
08:49When you have time, this is what we have to do.
08:51And then I'm a writer full time.
08:53And I'm able to bring that into my work as a death doula
08:56and say, listen, let's tell your story.
08:58And so then when the person dies,
09:00we have all of these things that some people
09:02don't get in the end.
09:04I'm able to craft, this is what I wanted as a kid.
09:09These were my favorite memories.
09:11These were my best friends, whatever that is,
09:13which also comes with the death deck, which
09:16is an amazing tool that I am able to use as well
09:20with some clients.
09:22So yeah, it helps ease that pain and the suffering
09:26for the families also.
09:29I want to turn to the audience.
09:30Does anyone have a question?
09:33We have one right here.
09:34I would just ask that you keep your questions brief
09:37and focused and definitely have a question in there.
09:40Thank you.
09:41Serita Finney with Bayer Consumer Health.
09:44This is probably best directed to Darnell.
09:47And purely selfish question for all of us
09:51with aging parents, which is probably
09:53many of us in the room.
09:55What is the best way to have the conversation about how
10:00would you like to die before it's an imminent event?
10:06Before it's the thing, yeah.
10:08To simply go in, a lot of people
10:12don't, to be an effective listener, I think we say it,
10:18but all of us, we aren't that.
10:20And to just go in and listen and ask the question.
10:23I come straight out and ask.
10:24I come into the room and I just say, how do you want to die?
10:28And some people are a little shaky on that at first,
10:31but it will start the conversation.
10:33And if that's the one that they don't want to answer,
10:37then there may be a softer one that they'll introduce and say,
10:40well, I don't know, but this.
10:46So just go in and just say, listen, I'm here to listen.
10:48Or talk about you.
10:50Go in and say, well, this is what I want.
10:52This is how I want to die.
10:54And then as you're talking about it,
10:57they'll see it may soften them up to the conversation as well.
11:01That's great advice.
11:02Can I add a couple of things?
11:04This is one of my favorite topics
11:05is how to have these difficult conversations.
11:07And so we can use media, as Shoshana was saying.
11:12There are films.
11:13There are podcasts.
11:14There is some great storytelling that Darnell is even part of.
11:19To be able to use those moments in a film.
11:23My mom and I watched This Is Us.
11:26And so after the episode where they're
11:28talking about the advanced directive, I called her up.
11:31And she had a lot of thoughts.
11:32And so we have to be creative.
11:35And then I created a game called The Death Deck
11:37to help people have these conversations as well.
11:40So there's a lot of tools out there.
11:42And I think we just have to be brave and willing and less
11:47denial about the fact that we're all going to die.
11:50And these don't have to be sad, scary conversations either.
11:54It can be an intense set of subjects,
11:55especially if the person is already ill.
11:58But it's really a way, if you think about it,
12:00of getting to know your loved one better.
12:03So approach it with that kind of love and curiosity
12:07of I want to know more about you as a person
12:10and honor you throughout your life.
12:12Absolutely.
12:13This is such great advice.
12:14We have another question right here.
12:16My name is Tara Bain.
12:17I'm with the 100 Top Hospital program.
12:19Prior to doing that, I actually practiced as a nurse
12:22and was a hospice nurse and had the privilege
12:24of being with people as they died,
12:26which it is a true privilege.
12:29I'm just curious, Darnell, how do you fit in with hospice?
12:32Are you totally separate?
12:34Because a lot of what you were describing
12:36is what I saw when I practiced as a hospice nurse.
12:39I think it's really cool what you're doing.
12:40I'm just kind of curious how that all fits together.
12:43No, absolutely.
12:43I've worked not for a hospice, but I've been in hospice.
12:47There are clients who will call who are in hospice.
12:50And honestly, the work that I do,
12:53I've seen hospice workers do hospice nurses.
12:55I've seen people who don't even know what death doulas are.
12:58I started in this work because my grandmother
13:00was a caretaker.
13:01She never heard the term death doula,
13:03but she did everything that I've been doing.
13:06I think we've all done the work on some level.
13:08But being in a hospice, I couldn't tell you
13:10what the difference is between what I do
13:12and what so many people in hospice do.
13:16It's an amazing, it is an amazing thing to see.
13:19And I think, like I said, I think we've all done the work.
13:22We've all been there for someone.
13:24We've all held someone's hand.
13:25We've all held space for someone.
13:28You know, even just going and taking the plate
13:30over to a sick neighbor, you know,
13:31whatever that is, I think we've all done it.
13:34We have one more question over here.
13:36Hi, I'm Eris Lazans with Stanford Medicine.
13:40Really important topic that you're addressing today.
13:42One of the things I've been thinking about
13:44is, you know, knowing the loneliness epidemic
13:46that's currently, you know, that we're all dealing
13:49with in the United States, how does that play
13:51into sort of end of life conversations
13:54or decision making, knowing that often people
13:56who are at that stage are hopefully counting
13:58on family networks and others to support them
14:01through something like this?
14:02How are you kind of thinking about that challenge?
14:07I mean, it's, it is a huge challenge, right?
14:09We know that most, you know, family members,
14:12younger family members don't live anywhere near,
14:14you know, their elders.
14:17And so thinking about who will, I think the question
14:19is about like who will care for you in those final,
14:22you know, days, weeks, moments of life.
14:24I don't know that we have, you know, major solutions.
14:27I think this is something that we need
14:29to be talking about as a society, right?
14:31So how we care for people through illness
14:33and through death is how we really should be
14:36measuring ourselves as a society.
14:40We need to do better.
14:42I do think that we'd be remiss to not talk
14:44about the field of palliative care in general,
14:46such that, you know, if someone is in the hospital,
14:49I know you know this, you know, having a team,
14:52inclusive of a social worker, a physician, a nurse,
14:54and a case manager thinking about these bigger questions
14:58about the logistics and the practicalities of care.
15:01But in reality, this is a major one.
15:03And I think, you know, the field of death doulas,
15:06while it's been around for, you know,
15:08probably for thousands, right?
15:10Since the beginning of time, it's now called death doula.
15:13They are filling a need, filling a gap,
15:16where I just lost my father this last year.
15:20You know, as somebody who's an expert in this space,
15:22I was texting a death doula friend of mine to get advice
15:25because I myself, you know, wasn't even as well equipped
15:29as I wanted to be caring for my father who was dying.
15:32So there are many, many gaps.
15:35Isolation and loneliness is a huge part of that conversation.
15:41And I think we also have to just be educating people more
15:44about hospice and palliative care and end of life options
15:48because hospice and palliative care do include
15:52that social worker who is skilled at finding resources
15:55and helping people with caregiving issues,
15:58enlisting the help of friends and family,
16:01referrals for death doulas when that's appropriate too.
16:04So really the education to let people know
16:07that these services are available,
16:09I think is the most important thing we can be doing.
16:12Darnell, do you have anything to add quickly?
16:14No, I would just like to say,
16:18I think it's very important you brought up
16:19just having those conversations,
16:21like those difficult conversations.
16:22I think that's what's gonna drive us a little bit further
16:27and really find out, you know, like,
16:30yeah, we aren't that close to some people,
16:32but having those conversations, you know,
16:35where do you wanna be?
16:36Do you wanna be here?
16:37How do you wanna die?
16:39You know, is a great way into a lot of that,
16:42a lot of the questions you all may have
16:45can be answered by just asking that first question.
16:48How do you wanna die?
16:49And just not being afraid of it, not running from it.
16:51And I think those conversations are what give us confidence
16:54to make decisions for our family members too, you know,
16:58because people are really scared to make decisions
17:00on behalf of their family member.
17:02And if you have these conversations,
17:04you can feel more confident in doing so.
17:06Thank you so much.
17:07You really are contributing to a big conversation
17:10that people are having already,
17:12that you're really working so hard
17:13to change the stigma around death.
17:14So I thank you so much.
17:15Thank you for your being here and for this conversation.
17:17Thank you.
17:18Thank you.