Research: What is end of life care?

Paul Bennet, IDEO

Death, Redesigned – The California Sunday Magazine

“I’d say that humans have thrived by turning every need — every vulnerability — into something in its own right.” Shelter becomes architecture, he noted. Reproduction gets wrapped in romance and love. And “think of all the cultural significance and artistry and labor that goes into [eating].” Miller wanted to bring that same creative power and meaning-making to death."

Angelo E. Volandes, The Conversation

How Not to Die – The Atlantic

“Many doctors don’t make time for The Conversation, or aren’t good at conducting it (they’re not trained or rewarded for doing so), or worry their patients can’t handle it.”
“...when doctors try to predict the goals and preferences of their patients, they are “highly inaccurate,” according to one summary of the research, published by Benjamin Moulton and Jaime S. King in The Journal of Law, Medicine & Ethics. Patients are “routinely asked to make decisions about treatment choices in the face of what can only be described as avoidable ignorance,” Moulton and King write. “In the absence of complete information, individuals frequently opt for procedures they would not otherwise choose.””
“Even physicians tell me they have difficulty holding back the kind of mindlessly aggressive treatment that one doctor I spoke with calls 'the war on death.'”

BJ Miller, Zen Hospice Care

TED Talk – What really matters at the end of life

[Patient] It's a good word. It means one who suffers. So I guess we're all patients.
My purpose today is to reach out across disciplines and invite design thinking into this big conversation. That is, to bring intention and creativity to the experience of dying.
...it can be very helpful to tease out suffering which is necessary as it is, from suffering we can change. The former is a natural, essential part of life, part of the deal, and to this we are called to make space, adjust, grow.
For most people, the scariest thing about death isn't being dead, it's dying, suffering.
We work on his bone pain and his fatigue, but most of the time we spend thinking out loud together about his life -- really, about our lives. In this way, Frank grieves. In this way, he keeps up with his losses as they roll in, so that he's ready to take in the next moment.
Phase 1Jens ObelResearch