JHF fellowship broaches death and dying
Improving CommunicationJewish Healthcare Foundation

JHF fellowship broaches death and dying

Jewish Healthcare Foundation helps medical professionals and patients address challenging topics more effectively

JHF fellowship participants discuss death and dying. (Photo courtesy of Jewish Healthcare Foundation)
JHF fellowship participants discuss death and dying. (Photo courtesy of Jewish Healthcare Foundation)

With twists, turns and sometimes terror prompting life’s most challenging moments, is there any way to prepare for the absolute worst? Jewish Healthcare Foundation thinks so.

Nearly a decade ago the organization founded its Death and Dying Fellowship. Geared toward physicians, nurses, social workers, ethicists and other health care professionals, the program facilitates conversation and training.

“We cannot control the fact that we are each going to die, but there are certain things that we could potentially plan for,” Nancy Zionts, JHF’s chief operating officer and chief program officer, said. “And information is power.”

Placing that knowledge, and skills, into stakeholders’ hands was the aim of Zionts and JHF to begin the multi-week training program.

“We always say that ‘Americans want a good death, just not a moment too soon.’ But that doesn’t happen by accident,” Zionts said.

A surgeon doesn’t show up to a case without having practiced, strategized and considered outcomes. Why should conversations around the end of life be any different, she asked.

Dr. Robert Arnold addresses fellowship participants. (Photo courtesy of Jewish Healthcare Foundation)

As part of the fellowship, participants spend more than two months meeting virtually and in person to discuss legal, medical, cultural and spiritual aspects of death and dying. Along with reviewing related literature and sharing experiences, participants hear from experts.

Dr. Judith Black, a retired geriatrician, has served as program co-director since 2018.

“We share with them a lot of different resources that they can utilize,” she said.

Collectively, guides and teachers are helpful, but the work really begins with “trying to get the individual to think about who they would want to make decisions for them — if they could — and thinking about what really matters,” Black said.

People often imagine that death and dying is the last week or days of someone’s life, but “most of us will have a couple years of disability and then there’s serious illness,” she continued.

End-of-life costs and care demand increased attention. Countries with modernizing economies are experiencing population aging and higher rates of chronic conditions. As a result, according to OECD, although 7 million people required end-of-life care in 2019, the number is expected to reach 10 million by 2050.

The financial costs are staggering. Public and private expenses in the U.S. total $80,000 (per person) in the last 12 months of life, and $155,000 in the last three years, according to The Lancet.

Nearly 25% of all Medicare spending goes “toward care for people during their last year of life,” JAMA reported.

And, approximately 10-12% of all health care spending is dedicated to end-of-life care in the U.S., according to the Journal of the Royal Society of Medicine.

The topic of death and dying cannot be avoided, “so we want to try to improve the communication skills,” Black said.

At the heart of this fellowship is a desire to ensure that health care providers and patients communicate more clearly and sensitively about difficult topics, Zionts explained.

Sometimes, even the best-intentioned professional may search for words, make mistakes or avoid matters because “it’s uncomfortable,” she said. “What if they really had a chance to contemplate things, think about what are the words they’d want to say and in what kinds of circumstances?”

Mastering best practices is a constant process. Photo via iStock

Gabriella Agostaro participated in the fellowship two years ago while completing a doctorate in health care ethics at Duquesne University.

“The fellowship introduced me to difficult conversations really early on in my career,” she said.

Having those interactions — even in imagined, role-playing, scenarios — was helpful, Agostaro, a clinical ethicist at Novant Health, a North Carolina-based health care system, said.

“I frequently see a lot of cases where there’s a lack of communication, and a lot of distrust in the medical system, unfortunately. With the tools that I was provided from the fellowship, I’m better able to approach these cases in a more sensitive manner,” she said.

Thoughtfulness doesn’t only serve the patient, but the health care system, Agostaro continued: “It really works to promote health equity and the shared decision-making model that a lot of providers seek to gain with their patients.”

“Health care is moving much more to a team-based approach, and it’s very important to be able to participate in an interdisciplinary team,” Black said.

The fellowship encourages participants to “interact in small groups and learn more about each other’s discipline. And that’s extremely important,” she added.

Shortly after starting a master’s in bioethics at the University of Pittsburgh, Ariel Leath, 36, joined the Death and Dying Fellowship.

Her professor recommended the program as a way to gain practical experience, “actually talking through these contemporary issues with other folks in the field — as opposed to just in the academic setting,” Leath said.

Leath had little idea how to address related issues.

“I was pretty nervous because I knew most of the other folks in the program had a medical background, and I was coming in from doing marketing for 10 years,” she said.

The relative newcomer worried about being “behind” other participants.

Those fears soon abated, she said: “We all came at it from this super-open collaborative perspective.”

Week after week, topics and readings generated robust conversations.

“You got to try things out, to work with the group, to workshop your thoughts and insecurities around these really difficult topics,” she said. “Even the speakers that came, no one pretended that this is easy. Everyone said it’s a constant learning process.”

JHF’s Death and Dying Fellowship just finished its 10th iteration. Since its inception, more than 250 fellows have gone through the tuition-free program.

Zionts said it’s “gratifying” to see the communal impacts.

Whereas the fellowship originally catered to early career professionals, an offshoot program now serves practitioners — some of whom have been in the field for up to 30 years — who want to “get the conversations right,” Zionts said. “They still want to talk to others about it. They still want to try out ideas.”

Another outgrowth is an Osher Lifelong Learning Course at Carnegie Mellon University.

Zionts said that she and Black use the space to talk about myriad issues surrounding death and dying, such as advanced care planning.

“Death and dying” will always sound scary to some people, but the topic shouldn’t be avoided, Zionts said.

“Thinking about this and sharing your decisions with your loved ones can be a gift to them so that they’re not there in a moment of terror or emergency trying to  figure out ‘I don’t know what Dad or Mom would have wanted,’” Zionts said.

The same goes for health care providers, she continued.

“You need to know what this patient and family want, versus what another patient and family want,” she said. “And you can’t tell just by looking at them. You can’t tell just by looking at their chart. You need to discuss it, and you need to find the language and the vocabulary to do that.”

The fellowship has grown since its start, but the goal remains the same, Zionts explained.

“This is about everybody being comfortable — finding that language and vocabulary and telling other people what it is that they want — so that what matters to them comes into being when the time is right,” she said. PJC

Adam Reinherz can be reached at areinherz@pittsburghjewishchronicle.org.

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