by Audrie Roelf
Hospice providers nationwide are seeking and developing strategies
for engaging with patients earlier in the course of their illness, as
many patients come into hospice too late in the course of their disease
to reap the full benefit of those services.
One such strategy is to encourage early conversations about death,
dying and associated health care goals and wishes. With this in mind,
some organizations are embracing a phenomenon known as death cafes.
The idea of death and dying is one most Americans avoid. Few want to
consider the impending death of a loved one, let alone confront their
own mortality. Enter the death café, a place where this topic is
discussed openly and honestly in a confidential setting with tea and
cake.
These events are part of a growing trend among the public in which
individuals are working to evolve society’s understanding and perception
of death.
“There are pockets of folks who are having conversations about death
and end-of-life care much more proactively,” Arul Thangavel, M.D.,
president of Wisercare, told Hospice News. “These are consumer groups or
groups of private individuals who believe that we need to
reconceptualize death as something that does not necessarily have to
take place in a hospital but can be much more of a soft landing and much
less acerbic to family members and everyone involved.”
The first death cafe was held in September 2011 in England by Jon
Underwood who developed the idea from the writings of Bernard Crettaz, a
Swiss sociologist who posited that discussing death leads to
authenticity and combats denial. Lizzy Miles, a hospice social worker
from Columbus, Ohio, and death café activist, is credited for bringing
the concept to the United States.
“I noticed that any time it comes up in conversation that I’m a
hospice social worker, people begin telling me their stories,” she said.
“So, when I heard about this concept in England, I figured people have a
desire to talk and I thought that in creating this people would become
more comfortable talking about death if they weren’t already.”
The concept of the death café is simple: These are casual gatherings
held in coffee shops, restaurants, libraries, and senior communities.
Hosts are volunteers, usually someone who has a close tie to the
subject, such as a social worker, chaplain, or hospice employee who lead
a discussion regarding issues surrounding death. There are no sales
pitches or organizations to join, and no cost to the participants.
Death cafes are not support groups, rather, discussions between
curious participants often center around advance care planning,
physician-assisted dying, funeral arrangements, and what happens after
death. Facilitators typically move around the room monitoring
conversations to identify anyone who might need counseling to pull them
aside and tell them where to find help.
“I like to give an introduction regarding the history of the death
café and set some ground rules,” Miles told Hospice News. “I start the
conversation by asking people to talk about what brought them here and
the attendees take it from there. People usually have topics on their
minds when they come to these events.”
Miles added that people often share personal experiences, thoughts on final wishes, books they’ve read, and so on.
Kathy Miller, LCPC and owner of Mindfulness Matters in Skokie, Ill.,
has facilitated death cafes for around five years and said there is no
agenda or course of action as a rule, “We want to offer a safe space to
talk about death and dying and, by extension, life and living,” she
explained. Miller has hosted participants as young as 18 and once had a
World War II veteran in a café. Some younger people who are proactive
about wanting their final wishes documented may come to a café and make
connections.
“Often, we talk about the grieving process and mixed emotions
surrounding that,” she said, explaining that in the situation where
someone may have been a caregiver during an extended illness, that often
includes feelings of release. “Those feelings of release, feelings that
they got their life back, cause some guilt and shame. We’re here to
talk about that openly and honestly.” She said groups often come to
discuss spiritual and philosophical questions as well as how to discuss
death and final wishes with loved ones without sounding morbid. Some
even discuss feelings surrounding the loss of a pet. “These discussions
often can be lively,” Miller noted. “We grieve, cry, and laugh;
commonality and humor are often a part of the meeting.”
Miller said that while some come to speak some simply listen. “The
group setting is wonderful because people realize they aren’t alone. To
hear about the experiences of others helps people realize the connection
we have as humans. Grief is not a pathology. It takes its own time and
never actually goes away, we just learn to live with it.”
Hospice is sometimes discussed due to lack of knowledge surrounding
hospices and what they offer. Miller said it would be beneficial for
hospices to offer these discussions themselves, “every hospice and
palliative care center could benefit from these cafes…they help people
understand the process of death and aid in a healthy grieving process.”
Miles told Hospice News that she once hosted a death café
specifically for hospice volunteers. “The volunteers loved it and I
received great feedback. They shared stories, gave advice, and supported
each other.” She added that medical professionals are often attracted
to these events because there isn’t that type of support and
conversational environment on the job.
Recognizing the value of these early conversations, hospice providers
are taking note of this movement. Some hospice organizations are indeed
hosting their own death café, including the Zen Hospice Project in San
Francisco and the Hospice of San Luis Obispo, also in California, which
holds a death café bimonthly.
Carris Health Rice Hospice in Willmar, Minn., recently began offering
a variation on death cafés that focuses specifically on educating the
public about hospice care. Dubbed “Hospice Cafés,” these gatherings take
place in three local coffee shops.
Notably, the conversation about cultural perceptions of death is
taking place not only in death café, but also in the C-suites of
companies that provide hospice.
When asked about the forthcoming Medicare Advantage hospice carve-in
at the National Association for Home Care & Hospice Financial
Management Conference in Chicago, the chief innovation officer of LHC
Group (NASDAQ: LHCG), Bruce Greenstein, replied, “Instead of putting our
energy into a Medicare Advantage carve-in, we should be focusing our
energy on changing the sociology of death so that patients and families
can begin receiving hospice care earlier.”
Full Article & Source:
Death Cafes Spur End-of-Life Care Conversations
