The Business of Making Better Memories

What drives the people within the palliative care movement? Torrie Fields, who leads the design and implementation of palliative care at Blue Shield of California, shares her story of how the personal became policy.

Torrie Fields has a strong belief in the power of community. With a knack for harnessing personal stories for policy change, she is a powerhouse in the field of health services research and palliative care advocacy. She’s been working with communities to advocate for better deaths for almost two decades — and entered the end of life space significantly younger than most. “I got into this field at the same time that I was creating my life plan of what I wanted to do. I was twelve years old.” I smile.

But this conversation is not going in the ‘precocious youth’ direction I’m expecting.

“I experienced a wealth of deaths. I lost my two best friends — in the same week,” she tells me. “One was killed very tragically in a car accident, on the way to our other friend’s memorial service. I did not see them coming; I was unprepared. And I did not know what grief felt like.”

She had just entered a master class on the dimensions of that emotion. It led her to youth grief and bereavement groups, which she eventually began facilitating for other adolescents.

What came out of those grief and bereavement groups, she says, was a wealth of stories that led her to think about death in a different way.

“It led me to understand, at the most fundamental level, that the personal is political,” she says. But her time standing at the intersection of those two worlds had only just begun.

In her late teens, Torrie was diagnosed with cervical cancer. “At the time that I was tested for cervical cancer, I had insurance. I did not have insurance any longer when I was called and got the news.” Quitting her job to move from California to Oregon in a pre-Obamacare world left her nineteen years old with a pre-existing condition. Once in her new home, she found that she didn’t qualify for Oregon’s Breast and Cervical Cancer Prevention Program because she’d been insured when she was tested.

She had to wait a year to get treatment, which added extra urgency to her search for a job that offered insurance. And then she paid her experience forward. “After I finished my treatment, I found the oncologist who was the subject matter expert for the Oregon state legislature,” she says. “We went and championed the change of that bill so that it would include individuals who were diagnosed previously, outside of a breast and cervical cancer prevention program. I actually stood in front of the Oregon state legislature and told my story, and they went, ‘Oh no! Where did the implementation of this policy go so wrong?’ It can really take one voice to make a change. You just need to connect the dots for people.”

Torrie has continued to push for that change in healthcare policy, fueled by personal narrative, to a diverse coalition of lawmakers. “Legislators who are, say, on the health and human services committee — they want a story. They want to be able to connect what’s happening out there that the organizations care about, to what’s going on in their personal life. The ways and means committee want to know the data; they want to know the finances. And so if you have an answer for both, if you’re able to bring together unlikely companions on a bill, you’re going to be that much stronger.” The way you connect those dots for people, the way concepts and stories are weaved into data and finance, she says, is a design issue.

“Design is not just the way people interact with care or how we might set up new programs or workflows. Some of the most important design problems focus on how we partner, how we communicate, how we transform a message to be heard by the right audience.”

Her focus on designing better deaths through effective community advocacy and communication has lofty objectives. She wants to see change on a broad scale: refinancing of healthcare, policy change at the state and federal levels, integrating social services into medical benefits, and community and patient engagement (where she sees OpenIDEO as a strong partner for the future). It all comes back to the central goal of palliative care, which mirrors the goals of human-centered design — building systems that keep the patient and family at the center.

“I’ve had many, many, many people in my life die, and what’s sad about it is that it’s very much like flipping a coin. You flip a coin and you have a good or a bad death,” she tells me. “Where I always work from is the idea that the way someone dies fundamentally transforms your memory of them. And I am in the business of making better memories.”

End of Life Stories

No one knows when it will happen.

End of Life Stories

No one knows when it will happen. Could be 30 years. Could be next week. What we do know is that we are all dying. And that how we die — perhaps the most important event human beings share — is something we never talk about.

Adwoa Gyimah-Brempong

Written by

Traveling storyteller; collector of carryons. Can often be found in a neon dress and cowboy boots, headed to the nearest airport.

End of Life Stories

No one knows when it will happen. Could be 30 years. Could be next week. What we do know is that we are all dying. And that how we die — perhaps the most important event human beings share — is something we never talk about.