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.”
Written by Audrie Roelf