The message about the importance of end-of-life advance planning voiced in the film “Being Mortal” — which aired last February on PBS’ “FRONTLINE” — resonated in California.
So much so that the John and Wauna Harman Foundation, which underwrote the TV production, and the California HealthCare Foundation provided grants of up to $2,000 to 39 organizations statewide to host a screening and discussion of the film in August and September. CHCF publishes California Healthline.
CHCF and the Harman Foundation initially provided 25 grants, but the overwhelming interest in the topic urged the groups to up the tally to 40, said Kate O’Malley, a senior program director at CHCF. One grantee backed out.
Many locations tailored screening events to their local communities — both culturally and linguistically — and some showed the film more than once. About 30 screenings were scheduled in Northern California.
The Harman Foundation recently pinpointed end of life and public engagement as areas of interest, Executive Director Julie Berrey said. That resulted in the foundation supporting the “FRONTLINE” film and subsequent screenings as a way to begin a dialog and overcome stigma about end-of-life issues.
The film “Being Mortal” was adapted from the best-selling book of the same name by Atul Gawande, a Boston surgeon. Both the film and book follow the doctor and other providers as they care for five patients and their families, Gawande’s among them, and features often uncomfortable, yet poignant, discussions about end-of-life options.
“I believe ‘Being Mortal’ was a great start, with more conversation to follow. It came from a physician’s perspective, and he did well sharing the struggles that physicians have,” said Elissa DeWolfe, a palliative care advance practice nurse with Hospice by the Bay who facilitated one of the post-screening discussions.
Going Local
One of the grant recipients was My Care, My Plan: Speak up Sonoma County, a collaborative that supports an advance care planning community initiative. It partnered with Vintage House, which provides activities and services to the over-55 population, and Sonoma Valley Hospital in sponsoring two September community screenings and discussions in Sonoma.
“The screening presented a chance to get the word out about advance care planning to our community,” said Cynthia Scarborough, executive director of Vintage House. “It is important that we recognize what others want at the end of life instead of having someone else decide.”
Jane Eckels, chair of the steering committee of My Care, My Plan, concurs with Scarborough. “It is important to have a conversation with family and friends now because no one knows when the end will come,” she said. “It is a gift to others if they know what you desire and why.”
Robert “Robbie” Cohen, CMIO at Sonoma Valley Hospital, was integral in the hospital’s participation in the screenings and discussions.
His interest in end-of-life planning was triggered by the death of his mother, who did not do any advance planning or have a directive in place. “She refused to talk about it when she could so that decisions were left to my siblings and me — a situation that put a lot of pressure on our relationships with each other,” he said.
During his 30 years of emergency department experience, Cohen, who served as the kick-off speaker for both Sonoma screenings, said it is common to have patients in crisis whose families were forced to confront issues during an extreme period of stress. “You need to have discussions with family before the end arrives,” he said.
Although there is interest in end-of-life issues, there is a lag between the need for planning and responding to it. There’s also a lack of community outreach tools that promote preparation — especially in the area of providing relevant information, culturally, ethnically and linguistically, said Julie Boudreau, CHCF project manager for the statewide screenings.
As an example, she alluded to the lack of diversity among the families featured in “Being Mortal.”
Vintage House attendee Silver John Hall, a retired hospice worker who moved to Sonoma in 2007, said the film is well done but agreed about the lack of diversity. He pointed out that all the film’s examples are white, well-educated, middle class, English-speaking heterosexual couples — “which, to be gentle about it, is a rather narrow focus group,” he said.
Animated Audience Shares Experiences
Small group discussions, facilitated by My Care, My Plan and other professionals after the screening, were designed to educate participants about available choices at the end of life and on how to identify and communicate their wishes to friends and family.
For some, the film provided an incentive to finish paperwork and for other attendees, it opened a door of memories.
Ajit Murti, professor emeritus at UC-Stanislaus and a Sonoma resident, relayed a story about a friend who had designated a “do not resuscitate” order, but the friend’s daughter disregarded the request. Eight years later, the friend is alive and grateful to his daughter for ignoring the order, he said.
The lessons learned, Murti said, are that a directive cannot control all contingencies and that some flexibility should be built into one’s wishes.
After watching the film, Murti said he is inspired to finish reading Gawande’s book “Being Mortal” and complete the Five Wishes instrument, a user-friendly, directive form.
Retired attorney and Sonoma resident Kathy Richards said the film made her more aware of advance care directives and that outlining her priorities goes beyond just stating what kinds of measures she wants or doesn’t want at the end.
She put a directive in place 20 years ago but said it is time for an update. She plans to discuss choices — not just put them in writing — with her husband and grown children.
“While we think we may have things under control, the unexpected could still happen. Life is uncertain. Eat dessert first,” said Hall, who completed a will and an advance directive, along with choosing a durable power of attorney, many years ago and has shared them with several people.
Helen Paul of Sonoma had good intentions when she and her husband created advance health care directives; however, their daughter, a nurse, persuaded them to change her father’s when he became ill. “The decision made his last days more painful and conflicted,” she said. “You need to share decisions with the entire family. I was passive so we didn’t discuss issues with each other.”
California No Stranger to End-of-Life Issues
Diana Dooley, secretary of California Health and Human Services, provided a taped introduction to the screening. “We want Californians to get the care they want and, like the people in this film, to have the opportunity to spend their last days at home with loved ones and friends — not necessarily in a hospital,” she said.
“The goal is for people at the end of life to maintain and maximize connections with people and experiences that are meaningful to them,” she continued. “This film will give you some ideas about how to make that happen and be part of the evolution that better personalizes the way our society thinks about dying,” she said.
“I have long been interested in patient engagement in health care. We need to make health more than just science and medicine,” Dooley said in an interview. “The more we can help people decide what kinds of interventions they want — not just at end of life — the more likely we are to be truly healthy.”
“It is difficult to talk about end-of-life issues, but the patient should be at the center of the conversation,” she said. “We shouldn’t be telling them what medicine can do for them but rather listen to patient priorities. We need to design plans around a patient and allow them to choose how much or how little intervention they prefer.”
End of life: maintaining dignity and independence is one of six goals established by CHHS in 2012.
On Friday, the California Legislature gave final approval to a bill giving physicians the green light to help end-of-life patients choose how they die.
The bill, ABX2-15 by Susan Eggman (D-Stockton), would make California the fifth state to allow assisted suicide.
What’s Next
Pre- and post-screening surveys provided at the events will evaluate knowledge of and attitudes toward end-of-life preparation and choices, and the film’s impact on planning for the end of life. From previous surveys on these issues conducted by CHCF, few people actually undertake end-of-life planning because they do not consider it a priority, even though it is important, O’Malley said.
Screening attendees will receive another survey in two months to determine if they have taken any action. In the interim, two upcoming workshops at Vintage House will assist residents in completing an advance health care directive.