February 21, 2019
Americans tend to be big talkers, with one glaring exception: When it comes to the subject of death, we fall silent. It’s understandable — death is both frightening and unavoidable. But given its inevitability, it seems that death and its details, from the mundane to the profound, deserve a seat at the table.
(Top): Frank Licciardi, Co-Chair of PFACQ; (middle) Moderator Patty Beirne with Matthew Matasar, MD; (bottom) Guests toasting at the January dinner, L to R: Dr. Matasar, Maximilian Stahl, Viswatej Avutu, Yinin Hu, Annie Schneider, Pascal Licciardi.
Frank Licciardi, Co-Chair of the Patient and Family Advisory Council for Quality (PFACQ), agrees. According to him, death is a subject that many patients want to discuss more frequently with their healthcare providers.
“Patients are looking to their care providers for information and guidance,” Mr. Licciardi says. “It’s important that we meet that need.”
PFACQ is a partnership of current and former patients, family members, caregivers, and clinical and administrative MSK leadership and staff that was founded in 2015. The group works to ensure the patient and family voice is heard and integrated into all MSK processes, projects, and committees. It has helped MSK identify areas in need of focused attention – like end-of-life care.
To encourage staff and patients to talk to each other about end-of-life issues, PFACQ has introduced to MSK a new idea called “Death Over Dinner.” The concept, which was created by Michael Hebb, is simple: Gather a group of people together over dinner and get them talking about death. To date, MSK has held three Death Over Dinner events, bringing together patients, caregivers, and staff to share a meal along with their fears, expectations, and hopes about dying.
Mr. Hebb hosted the first Death Over Dinner in 2013 in Seattle. Since then, more than 100,000 dinners have been held across the globe.
Elizabeth Krug, a PFACQ manager who serves as a liaison between PFACQ and MSK, says that Death Over Dinner is a way of helping staff focus on end-of-life issues in a more personal and immediate way.
“PFACQ recognizes that there’s room for improvement when it comes to talking about death at MSK,” she adds. “Our hope is that by discussing these issues and what they want for themselves, clinicians will find it somewhat easier to start similar conversations with their patients.”
What Happens at Death Over Dinner?
MSK’s most recent dinner was held on January 14 in Room 116 at Rockefeller Research Laboratories.
Like the two previous dinners, it was catered by Food and Nutrition Services and attended by approximately 40 people, who were seated at several round tables. Each table accommodated five to six guests, including a moderator, one patient and/or family caregiver, and several clinicians.
The evening began with a few words from Patty Beirne, Creative Lead of the Design and Innovation Group. Ms. Beirne participated in a Death Over Dinner in San Francisco in 2017 and shared her experience with PFACQ members, helping to generate enthusiasm for the idea at MSK. She has served as the “master moderator” for all three of MSK’s dinners.
After welcoming the guests at the January dinner, Ms. Beirne explained the ground rules, which basically came down to: Listen to each other, participate but refrain from debate, and leave your title at the door.
“We’re all here as subject matter experts in being human,” she said from the podium.
Every perspective is valuable, but according to Ms. Beirne, “It’s especially profound to hear our physicians talk about their experiences with death, both professionally and personally. These events encourage everyone to celebrate their humanness.”
Dying, of course, is as much a part of being human as it is a part of every physician’s professional experience — but that doesn’t make it easy to accept.
“As physicians, we focus on preserving life,” says Lisa DeAngelis, Acting Physician-in-Chief, who attended the January dinner. “But sometimes preparing for death is the appropriate action. Death Over Dinner is important because it makes us articulate our personal feelings about death — what we hope for, what we’re afraid of — which is sure to help us connect with our patients on a deeper level.”
Raise Your Glass and Remember
A series of toasts got things rolling. Each guest shared a story about someone they had loved and lost, and the rest of the table lifted their glasses in salute. Names that had never been uttered before in RRL were spoken with reverence and respect while tissue boxes at all the tables were quietly utilized. Next, participants turned to the set of questions that formed the basis for the evening’s discussion:
- What would be the best care for you during the last phase of your life?
- Talk about a death you encountered that had a profound impact.
- If you died suddenly, would your loved ones know what to do?
- What would you want your final days to look like?
Responses varied at one table: Some guests hoped to die at home in their sleep, but others worried about who would find them. Some had engaged in lengthy discussions with their family members about their final healthcare wishes, but many admitted they weren’t sure what they wanted. No one wanted to be alone at the end, nor did anyone want to die in an ICU. Guests offered up ready smiles and discreetly dabbed their eyes.
“People have different comfort levels with the subject,” says Mr. Licciardi. “But by the end of these dinners, there’s a real sense of camaraderie at each table. There are usually a few tears, but also a good amount of laughter.”
According to the US Centers for Disease Control, the average life expectancy in the United States is 78.6 years and, after the age of 45, you’re more likely to die of cancer or heart disease than a sudden event, like an accident. This means that most of us will have time to make certain decisions about what we want at the end. The question is, when will we make our decisions and who will we tell?
Talking: The Best Medicine for Some
“There are two issues that patients at MSK say they wish their care teams would talk more about,” says Mr. Licciardi. “The first is what resources are available to them throughout their journey. The second issue is end of life, which is particularly complex given that some patients feel their care teams are reluctant to bring it up while other patients are themselves reluctant to do so.”
According to The Conversation Project, a public engagement initiative started in 2010 that focuses on end-of-life care, people want to talk about death but they’re having trouble getting started. While 92 percent of Americans say it’s important to discuss their wishes for end-of-life care, only 32 percent have had such a conversation.
Statistics like these reinforce PFACQ’s commitment to facilitate end-of-life discussions. The committee has had a strong advocate in this effort in Diane Reidy, a doctor in the Gastrointestinal Oncology Service who is also the Physician Champion for PFACQ. She was instrumental in helping PFACQ establish Death Over Dinner at MSK.
“Every clinician can think of patients and family members whose pain could have been lessened if only they had talked about end-of-life wishes,” says Dr. Reidy. “These dinners provide a template for how to discuss these profound issues in a gentle but realistic way. I firmly believe that every person who cares for patients should experience a Death Over Dinner event.”
Present at the End
Because nurses spend so much time with patients and their families, many of the conversations that currently happen about death are between these groups. PFACQ has received enormous support from the Department of Nursing around its efforts to increase engagement around end-of-life issues, and several nurses have participated in a Death Over Dinner event.
“None of us wants to think that death is the only option,” says Elizabeth McCormick, Chief Nursing Officer, who attended the first Death Over Dinner at MSK in June 2018. “But sometimes providing the best death for a patient is part of providing the best care, which is why it’s so critical that we talk with our patients about their wishes.”
Staff members in the Department of Social Work also play an integral role in providing end-of-life support and guidance for patients and their families. Penny Damaskos, Director of Social Work, has offered members of her staff to serve as table moderators for each of the three dinners. Hadley Maya, a clinical social worker and a PFACQ member, was a moderator at the January dinner.
“I was moved by the willingness of each person at my table to engage so openly and authentically about what is important to them in life and in the closure of it,” says Ms. Maya. “The conversations inspired laughter and tears, as well as moments of profound connection around the one certainty that we all share. Overall, I feel that Death Over Dinner empowers all of us — patients, families, and staff — to approach conversations about death with deeper insight, comfort, and humanity.”
To continue the conversation, PFACQ will hold one Death Over Dinner every quarter, with the next one planned for March 20. Look for details on OneMSK.
