February 24, 2016 • 31 mins
In this episode we put out a pot of tea, a plate of cucumber sandwiches, and we take a seat with death. What is a “good death,” how do we achieve it and how might our dreams help?
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Episode Transcript
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Speaker 1 (00:00):
From how Stuff Works dot com. This is the stuff
of life. Welcome to this stuff of life. I'm your host,
Julie Douglas. In previous episodes, we've explored fear in its
many forms. We've tinkered with the idea of immortality by
making virtual stick figures to out survive us. And we've
(00:24):
looked at our complex relationship with objects and how they
become stand ins for our existence. You could say that
we've been dancing around a certain topic, a topic central
to life itself. What you might say is the flip
side to the same coin death. Who is the third
(00:44):
who walks always beside you? When I count, there are
only you and I together? But when I look ahead
up the white road, there is always another one walking
beside you, gliding wrapped in a brow, a mantle, hooded.
I do not know whether a man or a woman.
(01:06):
But who is that on the other side of the
Who is the third who walks always beside you? Is
a line from T. S. Eliot's The Waste Land. It
was inspired by Sir Ernest Shackleton's account of a nineteen
sixteen expedition to Antarctica and what Shackleton's party was forced
(01:28):
to abandon their ice beached ship in March for thirty
six grueling hours over mountain ranges and glaciers and Shackleton's
tale of survival. He recalled that he felt a presence
with him, that another had joined them. This became T. S. Eliot,
(01:51):
the third for which the third Man factor is named.
It's a phenomenon experienced by people in dire circumstances, circumstances
that clearly mark the line between life and death. The
third person has been interpreted as a benevolent spirit, a guide,
(02:11):
and even death himself. In this episode, we put out
a pot of tea, a plate of cucumber sandwiches, and
we take a seat with death at the table. Is
end of life, guide bets each Triposso sometimes I call
myself like a death detective. I'd go in and kind
of like a checklist. Okay, this person, this person is it,
(02:32):
this is it? This. We talked with my house Stuff
Works coworkers Christian Sager, Katherine Whitbourne, and Lauren Volgelbaum about
well the end and more that I learned about our
bodily processes, the more I'm like, oh, we are so delicate,
Oh this is this is horrifying that we're just walking
around all the time as though as though we're going
(02:53):
to continue doing that and we're not. And we talked
to Dr Christopher W. Kerr of Hospice Buffalo, who study
on end of life dreams and terminal patients. Is changing
our ideas about what it's like to die so so
different than anything else. I don't know, is it's relatable
(03:15):
to us in the same way that other experiences are.
But first, what is it like to sit beside the dying,
to be there for the sole purpose of ushering a
person through the most critical phase of their life. People
always say dying is easy, and then I say, have
you ever tried to die in the United States? I'm like,
it's not so easy. Um, you know, there's wills and
(03:38):
probate and who gets the car and who gets the house,
and um, you know, possessions to divide up in our families,
fighting over things. My name is Betsy cher Passo and
I am an end of life guide and advocate in
Los Angeles, California. Betsy has a background in psychotherapy and
(03:59):
as a hospice social worker, So when she enters someone's life,
she puts all expectations aside and meets the person where
he or she is guiding them through not just the
day to day physical business of dying, but the metaphysical
holding a space for them to explore what it's like
to face the ultimate unknown. Yeah, with the end of life,
(04:21):
there's so many questions and so many things that people
don't know and things that they don't know that they know.
So part of my work is helping them come to
some kind of experience of Okay, let me help you
with the practical things so we can get those out
of the way, so then I can do kind of
the holding space. The holding the space is really beautiful
(04:53):
and being there for the person and where they're at,
and sometimes it's just being quiet and letting them tell
you what they're thinking, or for the family who's overwhelmed.
You just come in with this calm, holding space and
letting them tell you what they need to tell you.
Um and they will and they're grateful that someone's finally listening.
(05:22):
Betsy has a ted X talk Death and the Desire
for a Hollywood ending. In it, she talks about the
AIDS crisis before the development of the act Cocktail, where
Betsy had up to five clients a day dying from
the brutal effects of HIV infection. It was during this
time that a client named Rob asked Betsy for Hollywood ending. Yeah,
(05:46):
and the movies, right, we see everything's always made like perfect.
You're gonna be all right, kid, I haven't got a
complaint in the world. Rock that free. Everyone forgiven? They
all talk, you know, And he gave me the idea of, Okay,
what can I do for everyone to give them as
(06:09):
close to the ending that they would love and want? Like,
how can I heal the relationships? How can I help
them do that? How can I help them say goodbye
so that they need to say goodbye to Like what
can I do? Um? And it won't be perfect, but
it will be as close to the desire how they
(06:30):
want their end of life to be. And in some
people it will never happen, and you just have to
help them come to terms with that. Not everyone dies
who's been a perfect person, or they might have hurt
somebody or been an alcoholic or distance people from them.
And sometimes people don't want to forgive. And I always
(06:51):
say death comes in always like all shape, sizes, colors,
You just you never know what it is. And some
people do what they call it rage against the you know,
they don't want to go, and some prefer not to
be witnessed at all. Some people do want to die alone,
you know, I mean, and that was also something that's
interesting too. You know, they're like, I want to be alone.
(07:13):
I don't want anybody to be be with me when
I die, which um is very interesting because they would
tell me that and they would make sure they died
when Nome was in the room. The thing about dying
is that it's not just cultural, it's generational. I mean,
when I started, like twenty years ago, I was helping
World War One veterans, World War two veterans, people from
(07:35):
the Holocaust, oppression, Eira people die and you know a
lot of them men and people were very practical. They
didn't talk about, oh I lived through the Depression or
the Holocaust, and why should I talk about it. And
the men were like, well, you know, therapy feelings, put
me in a nursing home, it's okay. Like you know,
(07:57):
they were like, I wanted to do things that would
easier and everyone else. We're becoming less afraid and we're
becoming more open because the baby boomers are you know,
I always said twenty years ago and like, the baby
boomers are not going to do death the same way
that my patients were doing it. So it was something
(08:17):
that was hidden in our culture. But I really see
this change happening. As part of our advocacy work. Betsy
runs something called the Death Cafe. It started with John
Underwood in the UK where people would gather for discussions.
So let's talk now to John Underwood was the founder
(08:38):
of the Death Cafe franchise. Tom, thanks so much for
being with us. Why don't you come up with this
idea of having a place for people to come and
have tea and cake and talk about death. Well, I
just think that that kind of thing should be available.
I think talking about death is a very normal thing
to do. I know most people don't want to look
for those of us that do want to do that,
(08:58):
there should be a safe space in which to do so.
American hospice social worker Lizzie Miles hosted the first Depth
Cafe in Columbus, Ohio, and Betsy began hosting in l
A in two thousand and thirteen. I make mine like
really small and three hours long, and people bring food
and like the first half hour. We don't even talk
about that. People just get to know each other, like
(09:21):
I don't even have them sit down and talk about death,
like they just it's like because that you're at a party,
because it makes it so much easier to kind of
just you know, ease into it. So we say it's
not a support group, it's not a therapy group. Some
people just sty're curious about who else comes to a
death cafe. You know, it's um You get all kinds
of people. Some people have had, people who have died
(09:44):
or suffering through alzheimer. At the heart of palliative care
is improving the life for the patient and the family,
and this includes improving dying. To this end, Betsy's seen
an increase and awarenes us of palliative care programs, but
still she worries about the seventy eight million baby boomers
(10:06):
and who will fund the end of life care that
they need, and she encourages everyone to look into resources,
look for that kind phase that's on that's of her
Dinner Conversation project, like if you need resources, there are
things that are out there. I don't want people do
feel like they're not alone. For Betsy, the ability to
(10:30):
help someone depart the world less anxiety ridden and more
at peace is a gift she can give. And she
does this by not just standing by and witnessing a
person's life come to a close, but by opening the
conversation about it, a conversation she wishes we would all
engage in much earlier in our lives. The reason why
(10:58):
we're gathered today, it's because Dearly Beloved, is because we
are discussing aspects of death, because of something called the
Death Cafe. I'm Christian Seger. I am one of the
co hosts of Stuff to Blow Your Mind, and I
am a writer host here in general. I write for
(11:19):
video and for the site. I'm Catherine Whitburn. Um, I'm
an editor. I'm Lauren Vogeldum. I am a writer, researcher,
host human for for How Stuff Works. You know, I
had an experience where my father was actually shot in
a in a hold up and he died. And um,
I remember before that, I mean, it was death was
(11:41):
just something you could not talk about and it was
so traumatic, but in a way it almost like freed,
you know, it was like I could talk about it,
you know. And I think about that because sometimes people
say you know, if someone dies, they say, you know,
I don't want to say anything because I don't want
to make it worse. Actually talking about it makes it
better a lot of time. It's just to bring the
person into it, you know. And um and after that, um,
(12:05):
in my in my mother's case, you know, after that
we started talking about very I could talk about it
with her like and she said, you know, when I go,
this is how I want my funeral to be. These
are where all my things are. So everything was put
in one space so that everything would be you know,
together and and accessible. And these were things we could
not have talked about before. Yeah. And but and that
(12:26):
probably seems like and feels like a lot more of
a mature way of approaching it, and was cathartic for you,
I imagine. Yeah, absolutely it really was, because, as you
talk about it is so much fear of the things
we don't talk about are often the things we fear
the most, and talking about it makes it more um,
you know, manageable. And you don't have to be afraid
as much as you think you do. I don't. I
(12:53):
don't know how you guys feel about your own death,
but I'm actually not very afraid of dying. I mean,
you know, of course, like you, I try not to
stand too close to the edge or anything like that.
But but the thought of other people dying is very
upsetting to me. And I probably base way more of
my like psychological room on that than anything else. I
(13:16):
would say that, Um, when I had my daughter is
when I really began to feel that, like on a
physical level kind of terror. Like first when I had
her and I was like, what if I'd done I've
created someone who's going to die, and um, it was
heartbreaking because you know, you love someone so much. And
(13:38):
then again when she was round four, I think when
she really understood like, oh, dying is real and thinking,
oh no, now she knows, and it was it's just again,
like that's when I felt it in my body, not
just you know, emotionally, like this is a terrible sucky
thing you think about In the past, like children's books,
(14:03):
I mean, death was such a part of them. It
was you know that you read those stories from the
last time because death was not just it wasn't books,
because it was a part of life in those days,
I mean, way more than it is today. Yeah, exactly,
So people saw people, people died in their homes. You know,
a mother might have several children, some of them died,
and death was more part of life for one of
(14:23):
a better word, um than it is. No. No, it's
sort of separated. And so in a way I think
it's harder to deal with because you don't see it.
You know, it's usually it's usually pushed aside and we
whisked away to that medical industrial complex so that we
kind of don't have to look at those ugly parts. Right. Well,
so for me, like when you first asked us to
come in here, the very first thing I thought of, Um,
(14:45):
I'm a horror writer. Outside of work, I write horror
short stories and comic books, and so it's on my
mind a lot. And one of the sort of like
Holy Grails of horror literature Stephen King's Donce macab where
he talks about horror literature and movies throughout history sort
of what works with them, and it's obviously at the
end of the day, it's it's about death, right Like,
(15:07):
it's about kind of grappling with death and understanding it.
Although his version of it is that horror in and
of itself is sort of the ability to capture a
childlike understanding of dying in fiction and transport like the
reader to that so like his version of it is
um He has a character in one of his books
say death is when the monsters get you, and that's
(15:29):
such a like, that's a child's understanding of death. My
mother died of cancer when I was eight, and as
as a child, you know you don't you don't have
this concept of of death in the word. I mean,
you know, I'd lost like a goldfish and like and
she and she was sick for a long time, so
I kind of knew it was coming. But but but
I didn't understand adults reluctance to just be straightforward about it.
(15:50):
And I was one of those If you can imagine
an awkward, precocious child sized lauren more child size than
I am today, that's that's that's exactly that's exactly what
I was. And so I was like what it was
so frustrating for me that no one wanted to just
talk about it. And but but as an adult, I
find it interesting that when one of my friends loses
(16:11):
someone that's that close to them, I I do the
exact same thing, Like I dance around it and uh
and wind up feeling like a huge jerk because because
it's it's impossible, like societal standards for it are so
strict that that even if it's like your best friend,
uh you, you go up to them and you want
to say you want to treat them like they're going
through a normal day, but of course they're not, and
(16:32):
it's just so hard to wrap your head around how
to deal with their grief. Like I don't know, I
find my own grief a lot easier to deal with.
I'm like, oh, I'm just gonna be over here and
I'm gonna be messed up for like a couple of years,
and that's it's gonna be cool. I'll keep going. But
dealing with other people's grief is very interesting. And you know,
to your point, I'm told of the opposite of you,
(16:54):
Laur And I mean, no, I just go right in there.
I mean, if I if someone has died, I feel
like I feel very comfortable to say I'm sorry. I
feel comfortable to ask them tell me about the person,
or if I know the person and I have a
good memory I can share with them. I do it
right there, and you know it, it's it definitely, you know,
everyone's different, and everybody approaches it differently or wants something different.
(17:14):
But I just feel like it's just easier to talk
about it now, and I wish we all felt that
we could do that. I think that for me, it's
been uncomfortable to address someone losing someone else, because I
felt like my words would be so hollow, you know,
(17:36):
for something that had happened, and that I wouldn't be
able to provide any measure of comfort. But a friend
of mine uh recently lost her father, and I see
that she needs to talk about him absolutely, and and
now I'm understanding better that this this is very much
part of her not just grieving process, but trying to
(17:58):
understand what happened, because I think that so much of
this is about us telling stories and trying to make
sense of something, and so we can't help but to
create those lines of logic over and over again and
talk about the story of how someone died and why
they died, because it's helping to solidify some sort of
(18:19):
order for us. There's a finality to death, but when
you begin to tease out the narrative surrounding it, you
find a sense of motion, a journey, a passage, a
conveyance of self to the void, and not just for
(18:40):
the person who is doing the dying, but for the
person who sits by their side and tries to make
sense of it all. Before she passed, she made to comment,
he told me the end of the week. And I
asked her, and I said, yeah, who's he? And she
(19:00):
just pointed up to the seing and she looked up
at the cell. And I said, well, what do you
mean the end of the week? And she just looked
at me and she said, death. What do you say
to that. That's a son talking about his mother's end
of life visions about people visiting her, some of whom
(19:22):
were deceased family and friends, many who told her the
day that she would die. In the video by Palliative
Care Institute Research, the Sun says he's okay with the
visions and dreams, but they were helping her to get ready.
These kind of end of life dreams that turns out
are universal and no surprise to hospice workers and caregivers
(19:42):
whose clients regularly experienced them. Medical training, you're not even
taught anything about dying. And what struck me was everybody
but me seemed to be able to prognosticate in some
ways death approaching based on what people did, experiences were
in the content of them, and they also recognize the
(20:05):
value therapeutically. That's Dr Christopher Kerr of Hospice Buffalo and
the principal investigator in the two thousand and fourteen study
in the Journal of Palliative Care about end of life
dreams and visions. In his ted X talk, I see
dead people, dreams and visions of the dying. Dr Currs says, quote,
we have all seen grim physical decline and suffering, and
(20:27):
we've all felt profound loss. So if there's light within
the darkness of dying, it's in the experience, not in
the observing. And this is why he seeks to not
just share, but quantify the words and experiences of the
dying through his two thousand and fourteen study. For it
to be palable for the medical community, I knew it
(20:51):
had to have some rigor to it, So I designed
the first study not really to amuse myself, but put
to put metric to it, basically a currency that I
knew that the non the medical community would be more
likely to have to pay attention to moderate the drugs
(21:13):
checked from mental status all the things that is necessary
to do, and it was also very important to do
that to get away from the phenomenal logic meaning death
of bed phenomena, the kind of stuff that's witnessed by
caregivers or loved ones, but not necessarily scrutinized or quantified.
One of the challenges of scrutinizing patients experiences was making
(21:34):
sure to distinguish the dreams and visions from delirium. The
biggest difference is, I've never seen delirious patients have an intact,
seen content or derive a meaning. Now, these are the
people to get tied up. You end up medicating. They're
horribly distressed, they'll stay awake for days out of fright.
It's profoundly experiential. It's not insight into life. It's not
(21:59):
really playing the past events in a way that gives
you wisdom. That's not delirium. Delirium is inspires things coming
out of the wall, somebody chasing you, you know, horrible
themes of attack and rape and paranoia. And and in
our second study what we did was every time anybody
had a reported a intact dream, your vision, we also
(22:24):
screamed them for delirium. I was laying in bed and
people were walking very slowly by me. The right hand
side I didn't know, but they were all very friendly,
and they touched my arm or my and when they
(22:44):
went by. And but the other side were people that
I knew. My mom and dad were there, my uncle,
everybody I knew that was dead was there, and they
passed and did the same thing. That's Hospice Buffalo patient Genie.
(23:07):
Her dream content is about comfort and loved ones waiting,
which turns out to be two of the six categories
that the study uncovered as underlying themes. The others include
preparing to go, watching or engaging with a dead, unfinished business,
and distressing life experiences. And even some of the distressed
dreams that caused discomfort had meaning. For example, every single
(23:32):
veteran goes back to war that we hadn't study every
single one, and it seems that any threat to your
own mortality during your life UM left a mark on
you to which you return, and that included veterans who
made it to basic training and not the theater of war.
Sometimes these past traumatic events to come back to shure
you're not pleasurable UM, but they might have meaning without
(23:56):
causing discomfort, but the vast majority um are comfort in
the vast majority of visitation. And if you get closer
to death, which was the surprising the study, you get
a disproportion bal with seeing the dead versus the living,
so that seeing the dead in greater percentages heralded impending death,
(24:17):
but seeing the dead was also associated with the highest
level of comfort. It's a kind of built in mechanism
for transitioning the body in the mind. And in this way,
Dr Kurr says that dying is not done on a
physical plane. And if you don't understand that, well, then
you're trying to place the patient's experience in reality, and
(24:37):
you're not able to recognize their journey and speak the
same language, and you can't treat the patient in totality
the context of what their whole experience is. I remember
when my grandmother was dying. She she had a many
nightmares and she was working through a lot of stuff.
So that made me curious with caregivers, do they help
(24:59):
pay stance to reframe their dreams? Are more disturbing dreams
and and um and and do family members understand what's
going on in these cases. We've done a lot of
work in that direction because it has a potential to
be a barrier to the bedside for families and caregivers.
(25:21):
And usually they're misinterpreted. I would say, and there's drugs involved,
and whether you know, there's metastas to a brain or something.
And if you demystify this, it's helpful. And that's what's
so important about normalizing in this phenomena. Part of the
(25:51):
reason why end of life dreams are underreported is that
we just don't ask about them. And the other part is, well,
there's a fear of ridicule. I actually totally get it.
I understand why they don't, um, because it's not like
you and I having a dream tonight about something that
happened last week. UM. You know. Particularly, they're really intense ones.
(26:16):
I can four. It's very hard to look at people
who you know in two thousand and sixteen and tell them, Look,
I just spent eight hours, you know, back in Vietnam,
and I saw everybody, and I'm telling you, I saw them.
I could they could smell the smoke, I could you know,
hear the gunfire. I was in a foxhole. I mean,
(26:39):
it's so intense, and it's so different than anything else.
I don't know, as it's relatable to us in the
same way that other experiences are. It's not like saying
I had a weird dream last night. Um. And when
they come out of it and they're not sure what's
real or what's not, this idea that they're losing in
(27:00):
their mind, um, it's fearful and often they're hiding um
and protecting themselves. You know, I think I think it's
I understand why it's challenged for them, and it's almost
it's all the more reason to ask because what we
see is you can see physically people that go it's
(27:20):
to give them permission. You know that this is a
very common thing you may experience and you'll be okay,
and let's talk about it if you want to. Then
you can watch people physically relax. And when people do
(27:43):
feel like they have permission to dwell in their dreams
and understand the therapeutic value, it can make all the difference.
My daughter makes self scarves. She dies the whatever people
want mixed colors straight, then she paints on them if
they want want want them painted on, and that they
were gorgeous, great, great, big beautiful colors, uh, and great big,
(28:09):
beautiful flowers, and we know outside UM, during the month
of July and August, we get these. I dreamt that
I was at a funeral home and I was the
(28:31):
only one there, and I opened the door because I
don't know why I was there, I don't know who
was there that I would be visiting. But I went
in and the whole room was filled with these beautiful
flowers like that had had painted on ourself starves. They
were just these gorgeous gorgeous colors, these reds and yellows,
(28:55):
greens and blues like you find the flowers in the
in the gardens, just these gorgeous, gorgeous colors. And they
made me so happy, and I thought, isn't this beautiful
UM such a beautiful scene, And I was so glad
that that that had come into my consciousness. I think
(29:23):
that if you look and here are some of these folks,
but they're describing, even in their final moments, they may
have failing part, but what they're experiencing in the deepest
sense is very much alive UM and to them very real.
And I think we should change our dialogue with them
in a way that matches what matters to they're living
(29:48):
and experiencing, and it's just in a very different way.
M h yeah. Thank you to Betty Trapasso and Dr
(30:13):
Christopher Kerr for sharing your stories with us. You can
find out more about their work and their ted X talks.
Thank you Christian Seger, Catherine Whitbourne, and Lauren Vogel Baumb
for sitting down and discussing death in such a personal way.
In the next episode, mourner for Higher, we'll take a
(30:34):
look at how something as peculiar sounding as a professional
mourner underscores the human need for ritual. When we're looking
at something like China or Taiwan, we have a rise
of professional mourners that are for Higher, often actors or
Chinese opera performers that are have realized that this is
(30:56):
a much more lucrative and uh easy the way to
support yourself. The Stuff of Life is written and co
produced by me Julie Douglas. Original music and sound design
is by co producer Noel Brown. Editorial oversight is provided
(31:17):
by Head of production Jerry Rowland. If you like what
we do here at the Stuff of Life, please consider
supporting the show by reviewing us on iTunes, and you
can email us at the Stuff of Life at how
stuff works dot com and find us on Facebook and Twitter.
From how Stuff Works dot com. This is the stuff
of life. Welcome to this stuff of life. I'm your host,
Julie Douglas. In previous episodes, we've explored fear in its
many forms. We've tinkered with the idea of immortality by
making virtual stick figures to out survive us. And we've
(00:24):
looked at our complex relationship with objects and how they
become stand ins for our existence. You could say that
we've been dancing around a certain topic, a topic central
to life itself. What you might say is the flip
side to the same coin death. Who is the third
(00:44):
who walks always beside you? When I count, there are
only you and I together? But when I look ahead
up the white road, there is always another one walking
beside you, gliding wrapped in a brow, a mantle, hooded.
I do not know whether a man or a woman.
(01:06):
But who is that on the other side of the
Who is the third who walks always beside you? Is
a line from T. S. Eliot's The Waste Land. It
was inspired by Sir Ernest Shackleton's account of a nineteen
sixteen expedition to Antarctica and what Shackleton's party was forced
(01:28):
to abandon their ice beached ship in March for thirty
six grueling hours over mountain ranges and glaciers and Shackleton's
tale of survival. He recalled that he felt a presence
with him, that another had joined them. This became T. S. Eliot,
(01:51):
the third for which the third Man factor is named.
It's a phenomenon experienced by people in dire circumstances, circumstances
that clearly mark the line between life and death. The
third person has been interpreted as a benevolent spirit, a guide,
(02:11):
and even death himself. In this episode, we put out
a pot of tea, a plate of cucumber sandwiches, and
we take a seat with death at the table. Is
end of life, guide bets each Triposso sometimes I call
myself like a death detective. I'd go in and kind
of like a checklist. Okay, this person, this person is it,
(02:32):
this is it? This. We talked with my house Stuff
Works coworkers Christian Sager, Katherine Whitbourne, and Lauren Volgelbaum about
well the end and more that I learned about our
bodily processes, the more I'm like, oh, we are so delicate,
Oh this is this is horrifying that we're just walking
around all the time as though as though we're going
(02:53):
to continue doing that and we're not. And we talked
to Dr Christopher W. Kerr of Hospice Buffalo, who study
on end of life dreams and terminal patients. Is changing
our ideas about what it's like to die so so
different than anything else. I don't know, is it's relatable
(03:15):
to us in the same way that other experiences are.
But first, what is it like to sit beside the dying,
to be there for the sole purpose of ushering a
person through the most critical phase of their life. People
always say dying is easy, and then I say, have
you ever tried to die in the United States? I'm like,
it's not so easy. Um, you know, there's wills and
(03:38):
probate and who gets the car and who gets the house,
and um, you know, possessions to divide up in our families,
fighting over things. My name is Betsy cher Passo and
I am an end of life guide and advocate in
Los Angeles, California. Betsy has a background in psychotherapy and
(03:59):
as a hospice social worker, So when she enters someone's life,
she puts all expectations aside and meets the person where
he or she is guiding them through not just the
day to day physical business of dying, but the metaphysical
holding a space for them to explore what it's like
to face the ultimate unknown. Yeah, with the end of life,
(04:21):
there's so many questions and so many things that people
don't know and things that they don't know that they know.
So part of my work is helping them come to
some kind of experience of Okay, let me help you
with the practical things so we can get those out
of the way, so then I can do kind of
the holding space. The holding the space is really beautiful
(04:53):
and being there for the person and where they're at,
and sometimes it's just being quiet and letting them tell
you what they're thinking, or for the family who's overwhelmed.
You just come in with this calm, holding space and
letting them tell you what they need to tell you.
Um and they will and they're grateful that someone's finally listening.
(05:22):
Betsy has a ted X talk Death and the Desire
for a Hollywood ending. In it, she talks about the
AIDS crisis before the development of the act Cocktail, where
Betsy had up to five clients a day dying from
the brutal effects of HIV infection. It was during this
time that a client named Rob asked Betsy for Hollywood ending. Yeah,
(05:46):
and the movies, right, we see everything's always made like perfect.
You're gonna be all right, kid, I haven't got a
complaint in the world. Rock that free. Everyone forgiven? They
all talk, you know, And he gave me the idea of, Okay,
what can I do for everyone to give them as
(06:09):
close to the ending that they would love and want? Like,
how can I heal the relationships? How can I help
them do that? How can I help them say goodbye
so that they need to say goodbye to Like what
can I do? Um? And it won't be perfect, but
it will be as close to the desire how they
(06:30):
want their end of life to be. And in some
people it will never happen, and you just have to
help them come to terms with that. Not everyone dies
who's been a perfect person, or they might have hurt
somebody or been an alcoholic or distance people from them.
And sometimes people don't want to forgive. And I always
(06:51):
say death comes in always like all shape, sizes, colors,
You just you never know what it is. And some
people do what they call it rage against the you know,
they don't want to go, and some prefer not to
be witnessed at all. Some people do want to die alone,
you know, I mean, and that was also something that's
interesting too. You know, they're like, I want to be alone.
(07:13):
I don't want anybody to be be with me when
I die, which um is very interesting because they would
tell me that and they would make sure they died
when Nome was in the room. The thing about dying
is that it's not just cultural, it's generational. I mean,
when I started, like twenty years ago, I was helping
World War One veterans, World War two veterans, people from
(07:35):
the Holocaust, oppression, Eira people die and you know a
lot of them men and people were very practical. They
didn't talk about, oh I lived through the Depression or
the Holocaust, and why should I talk about it. And
the men were like, well, you know, therapy feelings, put
me in a nursing home, it's okay. Like you know,
(07:57):
they were like, I wanted to do things that would
easier and everyone else. We're becoming less afraid and we're
becoming more open because the baby boomers are you know,
I always said twenty years ago and like, the baby
boomers are not going to do death the same way
that my patients were doing it. So it was something
(08:17):
that was hidden in our culture. But I really see
this change happening. As part of our advocacy work. Betsy
runs something called the Death Cafe. It started with John
Underwood in the UK where people would gather for discussions.
So let's talk now to John Underwood was the founder
(08:38):
of the Death Cafe franchise. Tom, thanks so much for
being with us. Why don't you come up with this
idea of having a place for people to come and
have tea and cake and talk about death. Well, I
just think that that kind of thing should be available.
I think talking about death is a very normal thing
to do. I know most people don't want to look
for those of us that do want to do that,
(08:58):
there should be a safe space in which to do so.
American hospice social worker Lizzie Miles hosted the first Depth
Cafe in Columbus, Ohio, and Betsy began hosting in l
A in two thousand and thirteen. I make mine like
really small and three hours long, and people bring food
and like the first half hour. We don't even talk
about that. People just get to know each other, like
(09:21):
I don't even have them sit down and talk about death,
like they just it's like because that you're at a party,
because it makes it so much easier to kind of
just you know, ease into it. So we say it's
not a support group, it's not a therapy group. Some
people just sty're curious about who else comes to a
death cafe. You know, it's um You get all kinds
of people. Some people have had, people who have died
(09:44):
or suffering through alzheimer. At the heart of palliative care
is improving the life for the patient and the family,
and this includes improving dying. To this end, Betsy's seen
an increase and awarenes us of palliative care programs, but
still she worries about the seventy eight million baby boomers
(10:06):
and who will fund the end of life care that
they need, and she encourages everyone to look into resources,
look for that kind phase that's on that's of her
Dinner Conversation project, like if you need resources, there are
things that are out there. I don't want people do
feel like they're not alone. For Betsy, the ability to
(10:30):
help someone depart the world less anxiety ridden and more
at peace is a gift she can give. And she
does this by not just standing by and witnessing a
person's life come to a close, but by opening the
conversation about it, a conversation she wishes we would all
engage in much earlier in our lives. The reason why
(10:58):
we're gathered today, it's because Dearly Beloved, is because we
are discussing aspects of death, because of something called the
Death Cafe. I'm Christian Seger. I am one of the
co hosts of Stuff to Blow Your Mind, and I
am a writer host here in general. I write for
(11:19):
video and for the site. I'm Catherine Whitburn. Um, I'm
an editor. I'm Lauren Vogeldum. I am a writer, researcher,
host human for for How Stuff Works. You know, I
had an experience where my father was actually shot in
a in a hold up and he died. And um,
I remember before that, I mean, it was death was
(11:41):
just something you could not talk about and it was
so traumatic, but in a way it almost like freed,
you know, it was like I could talk about it,
you know. And I think about that because sometimes people
say you know, if someone dies, they say, you know,
I don't want to say anything because I don't want
to make it worse. Actually talking about it makes it
better a lot of time. It's just to bring the
person into it, you know. And um and after that, um,
(12:05):
in my in my mother's case, you know, after that
we started talking about very I could talk about it
with her like and she said, you know, when I go,
this is how I want my funeral to be. These
are where all my things are. So everything was put
in one space so that everything would be you know,
together and and accessible. And these were things we could
not have talked about before. Yeah. And but and that
(12:26):
probably seems like and feels like a lot more of
a mature way of approaching it, and was cathartic for you,
I imagine. Yeah, absolutely it really was, because, as you
talk about it is so much fear of the things
we don't talk about are often the things we fear
the most, and talking about it makes it more um,
you know, manageable. And you don't have to be afraid
as much as you think you do. I don't. I
(12:53):
don't know how you guys feel about your own death,
but I'm actually not very afraid of dying. I mean,
you know, of course, like you, I try not to
stand too close to the edge or anything like that.
But but the thought of other people dying is very
upsetting to me. And I probably base way more of
my like psychological room on that than anything else. I
(13:16):
would say that, Um, when I had my daughter is
when I really began to feel that, like on a
physical level kind of terror. Like first when I had
her and I was like, what if I'd done I've
created someone who's going to die, and um, it was
heartbreaking because you know, you love someone so much. And
(13:38):
then again when she was round four, I think when
she really understood like, oh, dying is real and thinking,
oh no, now she knows, and it was it's just again,
like that's when I felt it in my body, not
just you know, emotionally, like this is a terrible sucky
thing you think about In the past, like children's books,
(14:03):
I mean, death was such a part of them. It
was you know that you read those stories from the
last time because death was not just it wasn't books,
because it was a part of life in those days,
I mean, way more than it is today. Yeah, exactly,
So people saw people, people died in their homes. You know,
a mother might have several children, some of them died,
and death was more part of life for one of
(14:23):
a better word, um than it is. No. No, it's
sort of separated. And so in a way I think
it's harder to deal with because you don't see it.
You know, it's usually it's usually pushed aside and we
whisked away to that medical industrial complex so that we
kind of don't have to look at those ugly parts. Right. Well,
so for me, like when you first asked us to
come in here, the very first thing I thought of, Um,
(14:45):
I'm a horror writer. Outside of work, I write horror
short stories and comic books, and so it's on my
mind a lot. And one of the sort of like
Holy Grails of horror literature Stephen King's Donce macab where
he talks about horror literature and movies throughout history sort
of what works with them, and it's obviously at the
end of the day, it's it's about death, right Like,
(15:07):
it's about kind of grappling with death and understanding it.
Although his version of it is that horror in and
of itself is sort of the ability to capture a
childlike understanding of dying in fiction and transport like the
reader to that so like his version of it is
um He has a character in one of his books
say death is when the monsters get you, and that's
(15:29):
such a like, that's a child's understanding of death. My
mother died of cancer when I was eight, and as
as a child, you know you don't you don't have
this concept of of death in the word. I mean,
you know, I'd lost like a goldfish and like and
she and she was sick for a long time, so
I kind of knew it was coming. But but but
I didn't understand adults reluctance to just be straightforward about it.
(15:50):
And I was one of those If you can imagine
an awkward, precocious child sized lauren more child size than
I am today, that's that's that's exactly that's exactly what
I was. And so I was like what it was
so frustrating for me that no one wanted to just
talk about it. And but but as an adult, I
find it interesting that when one of my friends loses
(16:11):
someone that's that close to them, I I do the
exact same thing, Like I dance around it and uh
and wind up feeling like a huge jerk because because
it's it's impossible, like societal standards for it are so
strict that that even if it's like your best friend,
uh you, you go up to them and you want
to say you want to treat them like they're going
through a normal day, but of course they're not, and
(16:32):
it's just so hard to wrap your head around how
to deal with their grief. Like I don't know, I
find my own grief a lot easier to deal with.
I'm like, oh, I'm just gonna be over here and
I'm gonna be messed up for like a couple of years,
and that's it's gonna be cool. I'll keep going. But
dealing with other people's grief is very interesting. And you know,
to your point, I'm told of the opposite of you,
(16:54):
Laur And I mean, no, I just go right in there.
I mean, if I if someone has died, I feel
like I feel very comfortable to say I'm sorry. I
feel comfortable to ask them tell me about the person,
or if I know the person and I have a
good memory I can share with them. I do it
right there, and you know it, it's it definitely, you know,
everyone's different, and everybody approaches it differently or wants something different.
(17:14):
But I just feel like it's just easier to talk
about it now, and I wish we all felt that
we could do that. I think that for me, it's
been uncomfortable to address someone losing someone else, because I
felt like my words would be so hollow, you know,
(17:36):
for something that had happened, and that I wouldn't be
able to provide any measure of comfort. But a friend
of mine uh recently lost her father, and I see
that she needs to talk about him absolutely, and and
now I'm understanding better that this this is very much
part of her not just grieving process, but trying to
(17:58):
understand what happened, because I think that so much of
this is about us telling stories and trying to make
sense of something, and so we can't help but to
create those lines of logic over and over again and
talk about the story of how someone died and why
they died, because it's helping to solidify some sort of
(18:19):
order for us. There's a finality to death, but when
you begin to tease out the narrative surrounding it, you
find a sense of motion, a journey, a passage, a
conveyance of self to the void, and not just for
(18:40):
the person who is doing the dying, but for the
person who sits by their side and tries to make
sense of it all. Before she passed, she made to comment,
he told me the end of the week. And I
asked her, and I said, yeah, who's he? And she
(19:00):
just pointed up to the seing and she looked up
at the cell. And I said, well, what do you
mean the end of the week? And she just looked
at me and she said, death. What do you say
to that. That's a son talking about his mother's end
of life visions about people visiting her, some of whom
(19:22):
were deceased family and friends, many who told her the
day that she would die. In the video by Palliative
Care Institute Research, the Sun says he's okay with the
visions and dreams, but they were helping her to get ready.
These kind of end of life dreams that turns out
are universal and no surprise to hospice workers and caregivers
(19:42):
whose clients regularly experienced them. Medical training, you're not even
taught anything about dying. And what struck me was everybody
but me seemed to be able to prognosticate in some
ways death approaching based on what people did, experiences were
in the content of them, and they also recognize the
(20:05):
value therapeutically. That's Dr Christopher Kerr of Hospice Buffalo and
the principal investigator in the two thousand and fourteen study
in the Journal of Palliative Care about end of life
dreams and visions. In his ted X talk, I see
dead people, dreams and visions of the dying. Dr Currs says, quote,
we have all seen grim physical decline and suffering, and
(20:27):
we've all felt profound loss. So if there's light within
the darkness of dying, it's in the experience, not in
the observing. And this is why he seeks to not
just share, but quantify the words and experiences of the
dying through his two thousand and fourteen study. For it
to be palable for the medical community, I knew it
(20:51):
had to have some rigor to it, So I designed
the first study not really to amuse myself, but put
to put metric to it, basically a currency that I
knew that the non the medical community would be more
likely to have to pay attention to moderate the drugs
(21:13):
checked from mental status all the things that is necessary
to do, and it was also very important to do
that to get away from the phenomenal logic meaning death
of bed phenomena, the kind of stuff that's witnessed by
caregivers or loved ones, but not necessarily scrutinized or quantified.
One of the challenges of scrutinizing patients experiences was making
(21:34):
sure to distinguish the dreams and visions from delirium. The
biggest difference is, I've never seen delirious patients have an intact,
seen content or derive a meaning. Now, these are the
people to get tied up. You end up medicating. They're
horribly distressed, they'll stay awake for days out of fright.
It's profoundly experiential. It's not insight into life. It's not
(21:59):
really playing the past events in a way that gives
you wisdom. That's not delirium. Delirium is inspires things coming
out of the wall, somebody chasing you, you know, horrible
themes of attack and rape and paranoia. And and in
our second study what we did was every time anybody
had a reported a intact dream, your vision, we also
(22:24):
screamed them for delirium. I was laying in bed and
people were walking very slowly by me. The right hand
side I didn't know, but they were all very friendly,
and they touched my arm or my and when they
(22:44):
went by. And but the other side were people that
I knew. My mom and dad were there, my uncle,
everybody I knew that was dead was there, and they
passed and did the same thing. That's Hospice Buffalo patient Genie.
(23:07):
Her dream content is about comfort and loved ones waiting,
which turns out to be two of the six categories
that the study uncovered as underlying themes. The others include
preparing to go, watching or engaging with a dead, unfinished business,
and distressing life experiences. And even some of the distressed
dreams that caused discomfort had meaning. For example, every single
(23:32):
veteran goes back to war that we hadn't study every
single one, and it seems that any threat to your
own mortality during your life UM left a mark on
you to which you return, and that included veterans who
made it to basic training and not the theater of war.
Sometimes these past traumatic events to come back to shure
you're not pleasurable UM, but they might have meaning without
(23:56):
causing discomfort, but the vast majority um are comfort in
the vast majority of visitation. And if you get closer
to death, which was the surprising the study, you get
a disproportion bal with seeing the dead versus the living,
so that seeing the dead in greater percentages heralded impending death,
(24:17):
but seeing the dead was also associated with the highest
level of comfort. It's a kind of built in mechanism
for transitioning the body in the mind. And in this way,
Dr Kurr says that dying is not done on a
physical plane. And if you don't understand that, well, then
you're trying to place the patient's experience in reality, and
(24:37):
you're not able to recognize their journey and speak the
same language, and you can't treat the patient in totality
the context of what their whole experience is. I remember
when my grandmother was dying. She she had a many
nightmares and she was working through a lot of stuff.
So that made me curious with caregivers, do they help
(24:59):
pay stance to reframe their dreams? Are more disturbing dreams
and and um and and do family members understand what's
going on in these cases. We've done a lot of
work in that direction because it has a potential to
be a barrier to the bedside for families and caregivers.
(25:21):
And usually they're misinterpreted. I would say, and there's drugs involved,
and whether you know, there's metastas to a brain or something.
And if you demystify this, it's helpful. And that's what's
so important about normalizing in this phenomena. Part of the
(25:51):
reason why end of life dreams are underreported is that
we just don't ask about them. And the other part is, well,
there's a fear of ridicule. I actually totally get it.
I understand why they don't, um, because it's not like
you and I having a dream tonight about something that
happened last week. UM. You know. Particularly, they're really intense ones.
(26:16):
I can four. It's very hard to look at people
who you know in two thousand and sixteen and tell them, Look,
I just spent eight hours, you know, back in Vietnam,
and I saw everybody, and I'm telling you, I saw them.
I could they could smell the smoke, I could you know,
hear the gunfire. I was in a foxhole. I mean,
(26:39):
it's so intense, and it's so different than anything else.
I don't know, as it's relatable to us in the
same way that other experiences are. It's not like saying
I had a weird dream last night. Um. And when
they come out of it and they're not sure what's
real or what's not, this idea that they're losing in
(27:00):
their mind, um, it's fearful and often they're hiding um
and protecting themselves. You know, I think I think it's
I understand why it's challenged for them, and it's almost
it's all the more reason to ask because what we
see is you can see physically people that go it's
(27:20):
to give them permission. You know that this is a
very common thing you may experience and you'll be okay,
and let's talk about it if you want to. Then
you can watch people physically relax. And when people do
(27:43):
feel like they have permission to dwell in their dreams
and understand the therapeutic value, it can make all the difference.
My daughter makes self scarves. She dies the whatever people
want mixed colors straight, then she paints on them if
they want want want them painted on, and that they
were gorgeous, great, great, big beautiful colors, uh, and great big,
(28:09):
beautiful flowers, and we know outside UM, during the month
of July and August, we get these. I dreamt that
I was at a funeral home and I was the
(28:31):
only one there, and I opened the door because I
don't know why I was there, I don't know who
was there that I would be visiting. But I went
in and the whole room was filled with these beautiful
flowers like that had had painted on ourself starves. They
were just these gorgeous gorgeous colors, these reds and yellows,
(28:55):
greens and blues like you find the flowers in the
in the gardens, just these gorgeous, gorgeous colors. And they
made me so happy, and I thought, isn't this beautiful
UM such a beautiful scene, And I was so glad
that that that had come into my consciousness. I think
(29:23):
that if you look and here are some of these folks,
but they're describing, even in their final moments, they may
have failing part, but what they're experiencing in the deepest
sense is very much alive UM and to them very real.
And I think we should change our dialogue with them
in a way that matches what matters to they're living
(29:48):
and experiencing, and it's just in a very different way.
M h yeah. Thank you to Betty Trapasso and Dr
(30:13):
Christopher Kerr for sharing your stories with us. You can
find out more about their work and their ted X talks.
Thank you Christian Seger, Catherine Whitbourne, and Lauren Vogel Baumb
for sitting down and discussing death in such a personal way.
In the next episode, mourner for Higher, we'll take a
(30:34):
look at how something as peculiar sounding as a professional
mourner underscores the human need for ritual. When we're looking
at something like China or Taiwan, we have a rise
of professional mourners that are for Higher, often actors or
Chinese opera performers that are have realized that this is
(30:56):
a much more lucrative and uh easy the way to
support yourself. The Stuff of Life is written and co
produced by me Julie Douglas. Original music and sound design
is by co producer Noel Brown. Editorial oversight is provided
(31:17):
by Head of production Jerry Rowland. If you like what
we do here at the Stuff of Life, please consider
supporting the show by reviewing us on iTunes, and you
can email us at the Stuff of Life at how
stuff works dot com and find us on Facebook and Twitter.
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