2013 TEDMED Report: What ideas could we help spread?

(Ed. - Please welcome another new blogger to Pallimed, Earl Quijada, MD (@equijada). Earl is a hospice and palliative care doctor in the Inland Empire of California. I first met Earl on Twitter and later at the 2011 AAHPM Assembly in Vancouver and I am very excited he is now a Pallimed contributor! - Sinclair)

I know I’m not supposed to say this but I’ll say it once - we’re not a death denying society. I’m starting to learn about death in nonclinical settings. My mind is opening and I’m stoked.

I just returned from 2013 TEDMED where the opening salvo encouraged me to drop my palliative care persona, make intellectual and emotional connections, and ask many questions. I was then immersed in thousands of disparate ideas.

Imagine my feeling when I realized that I don’t understand my patients. Patient perspectives are not seen. This problem, this theme was repeated.

America Bracho, CEO and President of Latino Health Access is solving this problem by turning patients into teachers in the same community. She is creating champions in neighborhoods to teach about diabetes. These teacher/patient relationships share social and environmental denominators. The result is an empowered community. The phrase “non-compliant diabetic” is fading. What if this happened in community where someone was dying? Would it be possible if patient education was done by someone who has gone through the same experience? Would the phrase “he’s in denial” fade? I think so. I want to know.

I feel that I possess listening and understanding skills but really had to take a second look when I realized that there is a whole patient vocabulary that I don’t recognize. Sally Okun, Vice President of Advocacy, Policy, and Safety at PatientsLikeMe is systematically curating a “patient lexicon”. Patients can’t be heard if patients aren’t understood. This patient lexicon will amplify voices so stories can be heard and understood.

An understood story is important. Amanda Bennett, Pulitzer Prize winning journalist and author of The Cost of Hope told a poignant story of her journey with her husband through his illness and eventual death. Through their courtship and marriage they did everything; they travelled, they adventured, they had many children, they had hope. Through his cancer, they "did everything". They had hope. They had directives that clearly stated to “stop everything” when there was “no hope” but they always had hope. They did not have a narrative for death. Denial was not a bug, it was a feature. What people called denial, they called hope. Stories need to be heard.

Michael Hebb

At TEDMED I was mostly an ordinary person. At lunch a CEO for a biotech company talked to me about her father’s death and how she will always remember kindness. On a trolley ride a designer explained how he is designing medical risk communication. He was interested in helping design conversations around death. At a party an EMR specialist talked about how she was moved by a home that housed the dying homeless. The topic of death is compelling because of it’s honesty. No one talked about symptoms, goals, or the normalcy of death. Just the honesty.

This honesty happens amongst ordinary people. I was not surprised when meeting other physicians that death was not on conversation. Michael Hebb, chef and “underground restaurateur, impresario, provacateur” is starting a project called, Let’s Have Dinner and Talk about Death. During these dinners, they talk about the beauty, mystery, fears, and hopes and the challenges of end-of-life planning. The wonder of this is that it’s done in a comfortable dinner setting. Michael stresses that these conversations should not be with physicians, nurses, or lawyers but amongst ordinary people. People want to talk about death when coupled with the right ingredients. Michael’s project is popular, it’s artsy and it’s potentially scalable. It’s such a great idea.

Perhaps the most difficult idea for me to understand is that of horizontal and vertical identity as described by Andrew Solomon, author of Far From the Tree and winner of the National Book Award. He describes horizontal identity as acquired from a peer group and vertical identify as usually respected identities from the parents. Horizontal identities are often viewed as flaws in which he describes deafness, sexuality, and severe mental illness. He heart wrenchingly describes painful ambivalence of parents between love and despair. Perhaps death is a horizontal identity that is overladen illness. Andrew proposes that as illness is moved to identity there is movement towards love and acceptance. I struggle calling death normal as I wouldn’t deafness or severe mental illness. There is no denying death, but recognizing that tension between love and despair.

People long to and are so grateful when they are identified.  The artist Raghava KK  said, "Teach perspective, learn empathy".  He has it right.  I'm taking a view and saying it again - we're not a death denying society.  What do you think?  Is this an idea worth spreading?

Photo Credit (some rights reserved on photos)
TEDMED Panel by Jerod Harris/TEDMED
Michael Hebb by Wayne Price - DeathOverDinner.org