News & Analysis

Medical News & Perspectives

Building a Better Death, One Conversation at a Time

Rebecca Voelker, MSJ

T
he Departure Lounge in London’s
Lewisham Shopping Centre of-
fered lots of supplies for a visitor’s
journey: suitcases, travel tips, and guides
to answer questions. But booking round-
trip passage wasn’t on the itinerary.
On this voyage, the final destination
was death.
The Departure Lounge is a UK cam-
paign spearheaded by the Academy of
Medical Sciences to get people talking
about death. Forget euphemisms like pass-
ing away, pushing up daisies, kicking the
bucket, or in the British vernacular, popping
your clogs. This is immersion in a conversa-
tion about death, complete with a sound-
track. A companion event at the Old Tigers
Head pub in London, called Dead Beats,
was billed as a lighthearted look at choos-
ing funeral music.
Designed to appear as a travel agency,
the Departure Lounge and its companion
website gave visitors a lot to think and talk
about. Posters suggested ways to start a con-
versation with family and friends about life’s
finale: ask whether they would change how
they live if they knew when they were go-
ing to die, or whether they’d prefer more
time vs better time at the end. Importantly,
ask when they would want medical treat-
ment to end.
Visitors could also write their thoughts
about death on story panels on the walls
or open a box containing quotes or per-
sonal stories about death. Piles of suit-
cases were covered with research data
about managing end-of-life symptoms and
what to be prepared for as life ends. The
ultimate intent is to “encourage people to
think about the journey of their life and
also the final part of the journey,” said
Irene Higginson, MD, a fellow of the Acad-
emy and director of the Cicely Saunders
Institute, a palliative care research center
Ashley Bingham/The Liminal Space
participation this year “is the first time that
an important academic medical body has
taken this [subject] on,” Higginson said.
Across the Pond
The UK campaign doesn’t exactly mirror the
US approach toward talking about death.
Shopping centers aren’t hosting pop-up
shops or kiosks, and “the cultural leader-
ship here isn’t coming from medicine,” said
Ira Byock, MD, founder and chief medical
officer of the Institute for Human Caring at
Providence St Joseph Health in Gardena,
California. The momentum comes from
other parts of society, he noted.
There’s Death Cafe, which calls itself
a “social franchise” operating in North
America, Europe, and Australasia to prompt
discussions about death over food and
drink. Similarly, Death Over Dinner, the
outgrowth of a University of Washington
graduate course, encourages people to
invite friends, family, coworkers, or com-
plete strangers to the dinner table to build
comfort and literacy into conversations
about death.
Talk runs the gamut from how people
feel about their own or a loved one’s death
to pet deaths, suicide, physician-assisted
death, and bucket lists. Conversations can
also turn toward practical matters such as
hospice, palliative care, will-writing soft-
ware, green burials, and Swedish death
cleaning—decluttering before death so the
task doesn’t fall to family or friends.
Some gatherings are planned as get-
togethers for professional groups or stu-
dent discussions. In Washington, DC,
students at Gallaudet University—a school
for people who are deaf or hard of
hearing—planned a Death Cafe at a coffee
shop fluent in American Sign Language.
For those interested in a larger-scale
event, there’s the End Well symposium, a
1-day meeting of entrepreneurs, tech
experts, health professionals, patients,
journalists, artists, and others interested in
openly discussing death as a human expe-
rience rather than a purely medical issue.
The sessions are eclectic. In a 2017 ses-
sion, Academy Award winning screen-
writer David Seidler spoke about filming a
documentary about death. Last year, mor-
tician and death acceptance advocate Caitlin
Doughty encouraged the living to have
rituals with a loved one’s body in the hours
after death, be it praying, singing, holding
the person’s hand, or telling stories.

at King’s College London.

Coinciding with Dying Matters
Awareness Week, sponsored in May by
Hospice UK, the Academy’s Departure
Lounge was among hundreds of events—
design your own coffin, anyone?—intended
to spur conversations. But the Academy’s

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 News & Analysis
Reimagine End of Life is a weeklong
festival that explores death and dying
through film, music, literature, and spiritu-
ality. This year’s festival is in San Francisco,
but the organization assists individuals
who want to plan their own events.
Reimagine is “right at the center of the
bulls eye of trying to foster some healthy
cultural maturation” in open discussions
about death, said Byock, who is board
member of the organization.
Perhaps one of the most comprehen-
sive initiatives launched in the United
States is the Conversation Project, which
Pulitzer Prize winning journalist Ellen
Goodman co-founded after years of caring
for her mother, who had Alzheimer dis-
ease. Goodman runs the program in col-
laboration with the Institute for Healthcare
Improvement to help people express their
preferences for end-of-life care and have
their wishes respected.
A 2016 four-country survey by the
Henry J. Kaiser Family Foundation and
London-based newspaper The Economist re-
ported that 56% of US participants said
they’ve had a serious conversation with a
loved one about medical care they would or
wouldn’t want at the end of their life.
Even so, the former Institute of Medi-
cine (IOM) advocated in a 2014 report for
widespread efforts to normalize conversa-
tions about death and dying. “Not only do
most Americans lack knowledge about
end-of-life care choices, but the health
community and other leaders also have
not fully utilized strategies to make that
knowledge available, meaningful, and rel-
evant across diverse population groups,” the
report stated. “[T]he time is right for a
national dialogue on this issue.”
A Different Conversation?
Not everyone agrees. “I just think that’s the
wrong approach,” said R. Sean Morrison, MD,
chair of the Brookdale Department of Geri-
atrics and Palliative Medicine at the Icahn
School of Medicine at Mount Sinai in
New York City. “[L]ook at the people who
were attending the Death Cafes; it’s not the
folks who are living with cancer … it’s not the
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folks living with advanced heart failure,” he
noted. “It’s healthy young and middle-aged
folks who are getting together to talk about
something very, very hypothetical.”
Posts on the Death Over Dinner web-
site indicate that people in their 20s on up
to their 70s have joined the dinners.
Granted, many are healthy adults. All of the
opinions, thoughts, and ideas expressed dur-
ing those conversations “will go away when
it’s really you,” Morrison added.
A woman with non–small cell lung can-
cer posted that the dinner she organized to
talk about her own death was emotionally
draining. Despite that, she called the gath-
ering “a huge success.”
Admittedly, it’s difficult to talk so
directly about one’s own death regardless
of how far in the future it may be. “Maybe
we need to reframe the conversation,”
said Joan Teno, MD, a professor of medi-
cine at the Oregon Health & Science Uni-
versity who was part of the study panel for
the 2014 IOM report.
Teno suggested a broader conversa-
tion about the phase of life rather than the
more narrow subject of death itself. “We
need a national conversation about retire-
ment” that encompasses how prepared the
person is for the next phase and what he or
she hopes to accomplish later in life.
That type of conversation, Morrison
said, differs from person to person depend-
ing on their chronic medical conditions. “My
conversation with a very healthy 65-year-
old might be very different from somebody
who has severe illness at 65,” he noted. For
those with serious illnesses, the emphasis
should be on improving their quality of life.
“If we do that really well, not only will
they have years of better living but the con-
sequence is that [it] will be a better death as
well,” he explained.
The Wave Is Coming
If there’s good end-of-life news for aging
populations in the United States and other
developed countries, it’s that hospice and
palliative care have made great strides over
the past 40 to 50 years. “What needs to hap-
pen is for medicine in general—the corpus of
medicine—to integrate the knowledge, atti-
tudes, and skills that we currently call pal-
liative care into the very fabric of human
care,” Byock said.
“There’s a wave of baby boomers ap-
proaching the end of life, so the need has
never been greater,” he added.
Changing patterns of disease and death
in recent decades are on a collision course
that necessitates greater attention to pallia-
tive care, Higginson noted. “Since about the
1970s and ’80s, people are dying later and
later in life,” Higginson said. So now the
population isn’t only older and more prone
to multiple chronic diseases, it’s larger be-
cause of that boomer wave, she noted.
“These two changes happening to-
gether are going to dramatically increase the
number of deaths we have at the same time,”
Higginson said.
What’s more, the number of people who
will die in distress from illnesses including
cancer, dementia, HIV, cerebrovascular dis-
ease, and degenerative central nervous sys-
tem diseases also will increase, according to
a recent Lancet Global Health study that
Higginson coauthored. By 2060, that num-
ber will reach 48 million people, or 47% of
all deaths worldwide. That’s an 87% in-
crease from 26 million people in 2016.
The vast majority of these deaths will
be in low- and middle-income countries,
but no part of the world will be spared.
The most rapid increase in health-related
suffering will be among people aged 70
years or older; cancer will be the biggest
contributor. Dementia-related suffering
will surge 264% by 2060, the highest
increase among 20 health conditions with
symptoms most often associated with
needing palliative care.
Higginson and her coauthors con-
cluded that integrating palliative care into
health systems is an ethical and economic
imperative. “Our job is not just to treat dis-
ease and keep people alive longer,” Byock
said. “Our job is to take the best care pos-
sible of people through the end of life, not
just at the end of life.”
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