Extensive Study Of Palliative Care

In 2014, the US Institute of Medicine made improving doctor patient communication a priority in its landmark study, Dying in America. An analogous publication in the UK, Ambitions for Palliative care and End of Life Care; emphasized the need for patients, family and caregivers to have “the opportunity for honest; sensitive and well inform conversations about dying, death and bereavement.” It reiterated that doctors need to make those conversations possible.

Bob doesn’t balk at tears. As a palliative care doctor, he has been at thousands of bedsides and had thousands of conversations; often wrenchingly difficult ones, about dying. But in 2007, when his father was dying of Alzheimer’s; Bob was struck by his own sensitivity to every word choice of the doctors and nurses, even though he was medically trained.

“If we [doctors] are feeling that vulnerable, and we theoretically have access to all the information we would want; it was a reminder to me of how vulnerable people without those types of resources are,” he says. He began to do research into how dying patients, family members and doctors talk in these moments about end of treatment, pain management and imminent death. Six years later, he received over $1 million from the American Cancer Society to undertake; so what became the most extensive study of palliative care conversations in the US.

Emotionally charged connections

Brigitte’s job in the lab that summer was simple: listen to moments of silence and categorize them. The idea was that they could indicate emotionally charged connections between doctor and patient. Once the silences were coded, they would be used to train a machine-learning algorithm to detect them automatically and, with them, moments of emotional connection.

In 2014, the US Institute of Medicine made improving doctor patient communication a priority in its landmark study, Dying in America. An analogous publication in the UK, Ambitions for Palliative and End of Life Care, emphasized the need for patients, family and caregivers to have “the opportunity for honest; sensitive and well inform conversations about dying, death and bereavement.” It reiterated that doctors need to make those conversations possible.

Most of the resulting communications training seems to offer scripts and templates to help doctors deliver bad news and make decisions with patients. But this is not enough. In this context, doctors really need to understand conversations more broadly. They need to appreciate everyone’s role in a conversation. They need to learn the ability to listen and be silent. So they need to confidently recover from conversational mis-steps.

Palliative Care Conversations

“Oncologists are in general very uncomfortable with this kind of thing. They want to focus on treatment; also they talk eloquently about different protocols and clinical trials,” says Wen-Ying Sylvia Chou, a program director in the Behavioral Research Program at the US National Cancer Institute. She oversees funding on patient doctor communication at the end of life. “But sitting in the place of being a listener is not something that clinicians are trained for or necessarily comfortable doing.”

The most recent result is a book, Palliative Care Conversations, publish in early 2019. It aims to show physicians how conversations work; such as how clinicians and patients often understand words and phrases differently. David looked at the conversations at a granular level; using the tools of a linguistic subfield called conversation analysis. He spent years listening to audio recordings of the conversations; noting moments worth closer analysis.

“This is not a clean, rational, logical experience that fits on an 8-and-a-half-by-11 piece of paper; so it’s a human engage relational endeavor,” he adds. “If we’re going to develop metrics for that; they’d better be looking at both the beauty and the science from many angles.” Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.

Feedback that helps clinicians

In 2017, James Tulsky, a palliative care physician at Dana-Farber Cancer Institute in Boston and a Harvard professor who studies health communication, stressed that “mass-scale; high quality automated coding will be require” to give feedback that helps clinicians improve their expressions of empathy. “The technology in theory exists out there to do all this,” Tulsky says. “It’s just a matter of doing enough research; running enough iterative trials, training up the machines to actually get these algorithms train well enough so you could apply them to more random talk.”

“Nobody is perfect, but there are times when one realizes there’s something; so that could be said to make this feel less like a loss,” she says. Sometimes she whispered under her breath something the doctors could have offered instead. After Bob found Brigitte crying, he wrote an ethics proposal to the hospital so that he could introduce a new procedure into his lab.

He borrowed an idea from the hospital’s palliative care unit; where staff gather every week to say the names of people who have died, then ring a singing bowl. Now, at the start of every Vermont Conversation Lab meeting; a researcher reads the name of one of the patients from the database and rings the bowl. So far, they have gone through the list of names twice. The ceremony helps, says Brigitte, because it reduces the guilt of turning a sensitive moment in someone’s life into a piece of data.