Recently, I joined people at the capitol in Sacramento to talk about death — our own. Together we watched Being Mortal, a compelling, emotional, and thoroughly absorbing documentary that explores why we should ensure that our personal wishes will be honored at the end of our lives — and how we can do that. Since mid-August, Being Mortal has sparked conversations all over California at 55 community screenings. Thousands gathered at libraries, schools, churches, community centers, and medical facilities to ponder the inevitable.
These screenings were needed. In a 2011 survey commissioned by the California Health Care Foundation (CHCF), nearly 80% of Californians said they would “probably or definitely want to talk with their doctor if they were seriously ill,” yet only 7% said their doctor ever raised the topic, and only 23% said they had written down their wishes. Everyone should have the opportunity to spend their last days having meaningful experiences with loved ones and friends in the setting of their choice, whether it be at home or in the hospital. But due to a lack of advanced care planning and unwillingness among doctors, family members, and even patients to address end-of-life care prior to a health crisis, not everyone has the chance to make their wishes known or to have them honored.
Secretary Dooley leads the post-film discussion.
It certainly wasn’t easy in my own family. As my mother got older, she let her children know she did not want doctors to make heroic efforts to prolong her life with medical technology. But when she fell ill for the last time, she happened to be in Texas with her sister. My aunt did not respect my mother’s wishes to die in peace and arranged for a helicopter to rush her to Houston, where she endured lots of unwanted medical interventions. The end of my mother’s life was nothing like what she envisioned.
By comparison, things were a lot different for my husband’s grandmother, who was diagnosed with cancer in 1976. A vibrant 74-year-old who lived life to the fullest, Grandma Jane snowmobiled in the Sierras and went clamming at Pismo Beach. After considering her choices, she decided against any treatment. A hospital bed was set up in her living room, and family members gathered around to spend time with her and listen to her tell stories. On July 4, 1976, she grew uncomfortable and agitated in the living room. She moved to her bedroom, which calmed her down, and she soon died peacefully in her own bed. I was 25, and I learned a powerful lesson: Dying well is a crucial part of living well.
The first time I watched Being Mortal, I was struck by how each person in the film chose different ways to spend their final days. What they had in common, however, was that they each made their own thoughtful choices with the help of family members — and then made them clear to everyone. Just like Grandma Jane, they chose how they wanted to experience their deaths. In other words, they decided how they wanted to live their lives.
A State-Level Issue
Although choosing an approach to one’s end-of-life care is very personal, supporting those choices requires both a personal and a policy response. Three years ago, we assembled the governor’s Let’s Get Healthy California Task Force to look at all the things California might do to become the healthiest state in the nation within a decade. The report identified no fewer than 30 priorities. Among the top three were improving experiences at the end of life by reducing hospitalizations and increasing palliative care, hospice care, and advanced care planning. At a state level, we chose to prioritize ways to make patients’ choices about end-of-life care known and respected. But making those choices must happen at a personal level: It’s truly about individual patient engagement — both with one’s family and with one’s physician.
Millions of Californians haven’t clarified their choices for end-of-life care. That’s why these community screening events were so important. The hope is that the film’s important messages will reach all communities, including people of color, immigrants, and others who were not well-represented among the viewing audience when Being Mortal first aired on PBS in February.
At the Sacramento screening, audience members talked about some of the creative ways they’ve brought together friends, family members, and colleagues to have these important discussions. One participant mentioned a “Death over Dinner” party where participants had dinner together and created a safe place to have the conversation. Another woman invited friends over on her birthday for a “Death over Donuts” party to discuss this topic. In the workplace, people have held brown bag lunches to talk about end-of-life decisions and tools with their colleagues.
We can all be leaders and play a role in how our society thinks and talks about dying. Make your wishes known. Talk to care providers, family members, friends, neighbors, and colleagues about your end-of-life preferences. Gather friends and family to watch Being Mortal online. You can use this toolkit to help guide a post-film conversation.
I encourage everyone to start the conversation with the people they care about so they too can find peace and comfort at the end of their lives.
Learn more about palliative care in general and about specific efforts in California from CHCF and the Coalition for Compassionate Care of California. The Sacramento screening of Being Mortal was hosted by the Government Action and Communication Institute, the California Foundation for Independent Living Centers, the California Program of All-Inclusive Care for the Elderly, the Coalition for Compassionate Care of California, the Congress of California Seniors, and the Harris Family Center for Disability and Health Policy. The capitol event was part of an educational campaign supported by CHCF and the John and Wauna Harman Foundation.
Diana Dooley was appointed secretary of the California Health and Human Services Agency in December 2010 by Governor Jerry Brown. She leads 13 state departments within the agency, chairs Covered California (the Health Benefit Exchange), and serves as chair or member of numerous other boards and commissions. Previously, Dooley was president and CEO of the California Children’s Hospital Association.