February 21, 2022
The COVID-19 pandemic changed everything, including how, when and where we gather at MSK. But important, often difficult, conversations still need to happen, including around end-of-life. In fact, the daily contemplation of deaths from COVID-19 has made those discussions more urgent.
“The need to talk about dying, and how we want to die, will never go away,” says Frank Licciardi, Chair Emeritus of the Patient and Family Advisory Council for Quality (PFACQ). “The pandemic only heightened that need.”
Well before the pandemic, in an effort to encourage those conversations, PFACQ held the first “Death Over Dinner” event at MSK in 2018, bringing together patients, caregivers, and staff to share a meal along with their fears, expectations, and hopes about dying. PFACQ is a partnership of current and former patients, family members, caregivers, and clinical and administrative MSK leadership and staff that works to ensure the patient and family voice is heard and integrated into all MSK processes, projects, and committees.
The Death Over Dinner events were very well received, and quickly became a regular fixture in large conference rooms at MSK, where Frank and other PFACQ members would welcome guests and then pose a set of questions to them to facilitate discussion during meals catered by Food & Nutrition Services. Guests, seated at tables of six to eight people, would share their feelings about death — a topic that many of us typically avoid. The goal was for attendees to leave the dinners feeling empowered to have these conversations with the people closest to them — and for clinicians to feel comfortable raising the subject with their patients.
According to Frank, death is a subject that many MSK patients want to discuss. “Patients are looking to their care providers for information and guidance,” Mr. Licciardi says. “It’s important that we meet that need.”
Responding to a New Reality
With the arrival of COVID-19 in spring 2020, physical gatherings like Death Over Dinner came to a halt in compliance with new safety rules. But the events, and the vital conversations they inspired, didn’t end — they evolved.
“We did what everybody else was doing,” explains Frank. “We moved to Zoom.”
On September 29, 2020, PFACQ began a new series of virtual Death Over Dinner events. Rather than invite people to dine at MSK, guests are now encouraged to login to a Zoom event. After an overview from Frank or another moderator, guests join small groups — generally a mix of MSK staff, patients, and caregivers — in assigned breakout rooms for candid conversation. A moderator in each “room” leads the discussion using an established list of questions and prompts, like “If you died suddenly, would your loved ones know what to do?” that asks each participant to consider their own deaths.
“It was challenging at first, trying to figure out how to connect with each other in this new setting,” remembers Frank. “But we worked through it and the results have been incredible. People are honest, engaged, and eager to talk about these issues in what remains a safe, supportive space.”
“It’s especially moving to see clinicians experience one of these dinners for the first time,” he adds. “It gives many of them a new appreciation for how much it means to their patients, and the patients’ families, to be guided in a discussion about end of life.”
Juliana Eng, a medical oncologist at MSK, attended a virtual Death Over Dinner in 2021.
“I found Death Over Dinner an incredibly meaningful event that helped me regain perspective on why I do what I do every day,” says Dr. Eng. “This event provides a space for physicians to share and process the trauma related to death and dying that we deal with on a regular basis. It encourages us to reflect about end of life in general and feel more comfortable talking about it with others. I found it incredibly helpful to hear others’ perspectives and experiences, and I appreciated the diversity of participants, from patients to fellow physicians. There was such a connection in our small group that I was inspired to arrange this event for my colleagues at MSK Commack.” An event for Commack employees is planned for spring 2022.
The current schedule of all 2022 virtual Death Over Dinner events is available here.
Engaging the Next Generation
While the subject of dying is something that many of us find hard to discuss, it’s not a topic that many young people tend even to think much about — including young people who are preparing to become physicians.
That’s something that PFACQ and MSK’s Office of Health Equity are trying to change.
A July 2021 virtual Death Over Dinner was tailored to students participating in MSK’s Summer Pipeline Program, an eight-week research program at MSK offered each year to about 20 medical students from communities that are underrepresented in medicine. The students work with a faculty mentor, conduct research, and participate in special programs geared toward providing them with a full overview of what it means to be a doctor.
“We try to offer a holistic experience that focuses on building skill sets and awareness that can supplement what students are learning in medical school and help them throughout their careers,” says Leticia Mercado, Associate Director of the Office of Health Equity, who oversees the program. “Death Over Dinner fits right into that.”
Leticia and Anoushka Afonso, an anesthesiologist and Faculty Director for Office of Health Equity Pipeline Programs and co-Director of the Enhanced Recovery after Surgery Programs, met Frank through Laura Liberman, Director of Faculty Development and a longtime champion of initiatives to support young people interested in medical careers.
“We talked with Frank and realized that this would be a tremendous offering for our students,” says Leticia. “They aren’t learning how to talk with patients about death at medical school; this was something unique we could provide that would really expand their perspective.”
The students loved it.
“We received great feedback in the student surveys after the event,” says Leticia. “Death Over Dinner was by far the students’ favorite session of the summer.”
Ricardo Lopez Betancourt, a student at Chicago Medical School, participated in the Summer Pipeline Program in 2020. Since then, he has worked as a medical student researcher with Dr. Afonso and other faculty members at MSK and was the Pipeline Program Coordinator in 2021 as well as a mentor for high school students participating in the MSK Summer Exposure Program. He attended the July 2021 event for the Summer Pipeline students.
“As medical students, we spend most of our time learning about human physiology and pathology, yet the topic of death is something that is generally avoided in medical school,” says Ricardo. “Death Over Dinner provided a safe environment to have an honest conversation about death and see the variety of perspectives among a very diverse group of, including physicians, patients, and family members. Without a doubt, Death Over Dinner has been one of the most meaningful experiences of my medical education.”
As Dr. Afonso points out, “Doctors in every medical specialty will have to deal with patients who are dying or who have life-threatening illnesses.” She continues: “Although students learn the technical skills of delivering information, they are not always comfortable with hard conversations. Death over Dinner humanizes discussions about death and gives students a glimpse of their own wishes —often for the very first time. These experiences will translate into better patient care.”
Leticia notes that 2021 was pivotal in terms of the programming offered to the students. “Death Over Dinner was one program, but we also offered time management, biostatistics, and Excel 101 to help them in organizing data,” she says. For the first time, the medical students were also matched as mentors to high school students participating in their own summer program at MSK.
“It was fantastic,” she says. “The medical students were able to be both mentors and mentees and the high school students had a mentor closer to them in age and experience. We will continue the mentoring this year.”
And Death Over Dinner? “We’re also planning to offer it again this summer,” she says.
Frank and PFACQ are already on it.