After a 'Living Memorial,' an Oncologist Spreads the Word

More to Death Than Grief

Nick Mulcahy

August 27, 2019

Tatiana Prowell, MD, a medical oncologist specializing in breast cancer, has had a revelation and she wants the world of oncology — and medicine in general — to know about it.

Prowell, who sees patients at Johns Hopkins University in Baltimore, recently attended a "living memorial" for a fellow mother in her 40s with school-age children in their suburban Maryland community. The concept is suited for someone who is sick and dying — yet still well enough to be comforted by a social gathering, like her friend, who is Catholic.

"As an oncologist, I've attended many memorial services but none before death," she (@tmprowell) tweeted afterward. The event was "wonderful," she commented.

"We were doing the things you wish you could do at a traditional memorial," she told Medscape Medical News. Perhaps most important was "telling this person how important she was to you."

Prowell said a living memorial was "never on my radar" before her friend's event and now she "can't imagine not recommending it" for appropriate patients.

"This is a concrete suggestion we can make to anyone in our care with a limited life expectancy," she said. "This is an idea that I hope will take off."

Prowell's multiple tweets in July about the living memorial did take off with hundreds of her 6600 followers, who endorsed the idea. A common message was: Why wait until a loved one dies to celebrate them?

One of those enthusiasts was prominent American breast oncologist and trialist Hope Rugo, MD, University of California San Francisco.

Just days after Prowell's Twitter thread, Rugo shared the idea with a long-time patient of hers, who is Jewish, in her 60s, and whose metastatic cancer had significantly worsened.

https://twitter.com/hoperugo/status/1156063263576088576

A shiva, or sitting shiva, is the Jewish mourning tradition that helps guide friends and family through the loss of a loved one. The living shiva, which Rugo could not attend, "went incredibly well."

"It's such a wonderful way to celebrate your life," Rugo told Medscape Medical News.

Rugo, who does not practice a religious faith, has since mentioned the idea to another patient and will continue to do so. "Oncologists have an enormous duty to help patients die," she added.

April Knowles, 43, Pensacola, Florida, who is living with metastatic breast cancer, saw Prowell's Twitter posts and said she (@akknowles1) will have a living memorial for herself.

"What's the point of people saying good stuff about you when you're dead? Go ahead and tell me while I'm alive," Knowles told Medscape Medical News.

Knowles, who has had no evidence of disease for 4.5 years, plays tennis and attends CrossFit but has been to multiple funerals for young, cancer-patient friends in Florida. "People toast and say great things — why not have the person be there?" she asserted.

Louise Gracielle, MD, a pathologist in Juiz de Fora, Brazil, (@LouiseGracielle) was deeply struck by Prowell's six-part Twitter thread.

"Reading that story Dr Prowell told threw a totally different perspective at my face: There's more about death than grief," she told Medscape Medical News via email.

"Having the opportunity to celebrate the life you led with the ones you love, hearing them tell stories about moments with you that will be unforgettable, being reminded of how you moved and inspired people around you is a wonderful way of saying goodbye," she added.

What's It Like?

The idea of a living memorial is not new, and it was perhaps most widely disseminated in the United States by Mitch Albom, author of the 1997 best seller Tuesdays with Morrie. The memoir describes a memorial held for his old college professor at the man's home as he declined from ALS, or Lou Gehrig's disease.

The concept has also reportedly taken root in Japan, where it is called a pre-funeral and a growing elderly population is reshaping end-of-life rituals.

In suburban Maryland, medical oncologist Prowell and her social circle were surprised when their friend, who had recently entered home hospice as her cancer spread uncontrollably, announced her living memorial.

She and her family decided to have a "celebration of life" in lieu of a later viewing. So they created a public Facebook invitation aimed at acquaintances, friends, and close loved ones. Share "a story, hug, smile or especially a photo" and "say goodbye," it read. The tone was informal, casual.

In the week following the announcement, Prowell and an extended group of mutual friends channeled their big uncertainties into small concerns: what to wear, whether it was okay to bring the kids straight from sports practice, what mood to strike, and so on. "Nobody knew what the etiquette was," summarized Prowell.

Soon, they found out none of it mattered.

The event, held in a secular rec room at a local Catholic church, featured a photo booth, which was rented to provide Polaroid remembrances of the moment. Silliness and joy were encouraged and captured. Moreover, framed photographs of the woman, her husband and children, from all stages of life (ie great conversation starters) were located throughout the room. The family provided food and drink and some guests also contributed.

The woman made her way around the room and the room made their way to her.

"Much of it was informal and, I would say, not that sad. Some people were crying," said Prowell. "A lot of people talked about how remarkable this experience was."

The feeling was of a family reunion, she said. Kids ran outside and played on the playground, circles based on affinities and age sat together, people ate and drank, and conversations ebbed and flowed. There was a lot of hugging.

Eventually, the woman's husband read a tribute to her and then close friends took turns testifying and storytelling. The process was a like a Quaker wedding, said Prowell, where attendees stand and speak when they feel a need to share.

A Stepping Stone to Accepting Death

Since the event in June, Prowell has mentioned the idea of a living memorial to a number of patients at Johns Hopkins, where she works in the second-opinion breast cancer clinic, including to some women whose eyes "lit up" at the suggestion.

Prowell, who also works for the Food and Drug Administration as a scientific liaison to US breast cancer researchers, said a living memorial creates the "inverse feeling" from funerals, where people often look at the gathering and ruefully say, "Grandma would have loved this." Instead, Grandma can be present and feel the love.

However, living memorials may be especially well suited for people who have yet to reach old age, observed Prowell and others.

Metastatic cancer is also "lonely," especially for younger patients with advanced disease, said Prowell. "This is a way to make sure the end of life is the opposite of lonely," she said.

Death is "raw and traumatic" when people die at younger ages, said Knowles, who was 38 when she was diagnosed with metastatic disease. Her son was just 7 years old at the time. She feared that her death would be her greatest legacy with him.

"I've heard stories of kids whose parents died young from cancer and how they had to watch them. And what an impact that watching that suffering had on them. I just don't want that to be his memory," she said.

A living memorial, on the other hand, offers an opportunity to add a memory that is joyous and celebratory.

"I like having people at my house, and I like to entertain. So, I'll have a party when I start hospice. Everybody can come over and eat good food and talk about how frickin' great I am," she laughed.

Prowell said her friend's living memorial was created, in part, because the woman wanted her children to know that "they will be all right."

Prowell is now an advocate for living memorials and has given the event a lot of thought. First up: "There doesn't need to a formula for this." Guest lists, structure, food, and other elements should be based on the individual. Overplanning can "strip all the joy" from big ceremonies such as weddings, she observed.

Discussing a memorial with patients also provides an "opening" to talk about death in a way "that's not just medical and technical," says Prowell.

"It's a stepping stone to accepting mortality," she said.

Living memorials can also be for people who have ruptures in family relations, friendships, and community due to divorce or conflicts. Prowell explained: "This is a way to bring everyone back together and say, 'You are forgiven.' "

Brazilian pathologist Gracielle pointed out that a living memorial "can make the departure less painful for those who stay."

She pointed to a common regret among survivors: "We all know someone who died and we thought, 'I never told him how much I liked this and that about him . . . if only I could say it now' — right?"

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