If you or a loved one has ever been diagnosed with a serious illness, you may or not have remembered all the details of those visits with doctors. Maybe your mind was racing, the room a blur.
Was the doctor helpful? Did they listen? And did you understand what was going on? Chances are not entirely, according to Dr. Anthony Back, an oncologist at the University of Washington. But he says doctor’s struggle with these conversations, too.
“When I was doing my oncology training, I would sit through so many visits between expert oncologists and patients where the experts would talk in great, great detail about all the scientific breakthroughs that they were trying to deliver to them, and the patients would leave totally confused,” Back recalls. “Not only would they leave totally confused, but they would leave not making good decisions for themselves, and decisions that were not really matching what they wanted and needed from their health care.”
Dr. Bob Arnold, chief of palliative care and bioethics at the University of Pittsburgh, is still haunted by some of the “stupid stuff” he has said to patients.
“And you sort of realize that you know a lot of science and you have in your head what you want to convey, and yet finding the words and being able to sit and be present with really sad situations is harder than you think,” he says.
So for the last two decades, Dr. Arnold, Dr. Back, and peers at Duke University and the University of Washington, have been researching and trying to figure out how to change this and improve the communication skills of clinicians who treat people with serious illnesses.
They’ve developed an approach called Vital Talk, which involves an intimate one to three day training. Through hours of role-playing and feedback, participants try out different conversational techniques. They brainstorm specific phrases that may be useful the next time they’re trying to navigate a tough conversation with a patient.
Back and Arnold recently convened their first training in Philadelphia, as part of a pilot through the American Cancer Society. Nearly two dozen oncologists and nurse practitioners from five area medical centers participated.
“It’s intense, it’s really intense,” says Dr. Amy Mackenzie, a geriatric oncologist at Thomas Jefferson University.
The importance of emotion
By mid afternoon, Mackenzie found herself face-to-face with Chris Martinez, a 45 year old with lymphoma. He’s been through chemo and he has had a stem cell transplant. He has come in for some test results and hunches, ever so slightly in his chair, pressing his hands between his legs.
He wants to be cancer free.
“How much time do I have if I stop the chemo, if I stop now?” he asks Mackenzie.
Mackenzie knows he has, at most, one month to live. She wonders, does he really understand this? What if he asks to try chemo again? What are his real goals and priorities? Her mind is racing.
She gently leans in.
“Honestly, I think we’re probably looking at a matter of weeks, either with or without the chemo.”
“That’s no time at all,” he says.
“I’m really sorry,” Mackenzie responds.
Now Martinez is not actually a real patient. He’s an actor, Allen Ribblett. And this is not actually Dr. Mackenzie’s office at Thomas Jefferson University. It’s one of those drafty, carpeted conference rooms in a hotel on the outskirts of Philadelphia.
Oh, and they’re not alone.
“What can we do—-” Mackenzie begins.
Before she can finish her response to Martinez, Dr. Arnold intervenes. Arnold is informal but intense, with his shoes off and wearing bright striped socks. He and five other participating clinicians from places like Fox Chase Cancer Center, Crozier Keystone Health System and the University of Pennsylvania, all sit in a semi-circle around Mackenzie and Martinez, the fake patient. They all offer feedback to whichever one of them is up front, in that hot seat.
“Where is he, emotion or facts?” he asks.
Emotion, says Mackenzie.
Arnold has called a “time out” because he sees that Mackenzie is getting stuck. She’s trying to figure out how to make a plan for Martinez, now that he really knows his prognosis.
While there’s no one approach to any situation, Arnold encourages Mackenzie to try waiting with Martinez. He says just being with Martinez – recognizing that emotion in the exam room and playing off it – may actually save time and lead to more productive conversations…at whatever stage a patient with a serious illness is in.
“If I give you information and you’re really emotionally overwhelmed, you don’t hear it. And then you come in next day, and you ask it again, and I’m sort of frustrated,” he says.
Arnold says people’s emotions often reflect what’s most important to them in that exam room, and indicate what doctors really should be spending their limited attention and energy on.
“You’re doing great, you just need to hang with him [Martinez],” he continues. “He came in thinking you might say it’s curable.”
Mackenzie and Martinez reset and try again, picking up at that moment where Martinez learns he has just a few weeks left.
“I don’t know how this happened, I don’t believe it,” he resumes.
This time, instead of chiming in to ask about what can she do to come up with a plan, Mackenzie just sits with him and his emotions..
The room is totally still.
About 15 seconds pass.
“What do I do,” Martinez asks.
He brings it up.
“He’ll get there. you just have to sit with it,” says Arnold. “Perfect.”
He ends the role play. Now, he says, the patient is ready. He’s in a place where he and Mackenzie are on the same page and together, they can map out next steps.
Arnold asks Mackenzie what the take-home point is for her.
“Stop. Stop. Just stop,” she says. “Have patience, you know? I have a tendency to just want to push forward and do, do, do.”
Arnold acknowledges that’s essentially built into their nature as doctors, with the emphasis on scientific knowledge.
“In general that [doing] works well for us as oncologists and as nurse practitioners in oncology. It helps you feel good,” he says. “But sometimes it doesn’t move [things] forward.”
Working toward a ‘culture change’ in medicine
Arnold and Back say doctors may get a lot of continuing education in clinical practices and scientific advances, but for the most part, they’re not trained in how to be good communicators with patients who are struggling with serious illnesses.
Palliative care is starting to address this, but the two want to create an entire culture shift in medicine. Participants in this Philadelphia training were a self-selecting bunch. The American Cancer Society had identified them as “opinion leaders” in the region, and invited them to participate. Arnold and Back’s goal is to ultimately train about 13,000 clinicians, or half of all oncologists in the U.S. They view that as the tipping point, what it will take for meaningful conversations to become the norm in health care.
“Everyone sort of talks about how their doctor knows the latest stuff,” says Arnold. “We want them also to say ‘my doctor really listens to me, my doctor really gets where I am. I feel like I can really talk to my doctor about the really tough stuff that I’m confronting.'”
For Mackenzie, she says her visit with Martinez might have been a role play, but she encounters similar situations all the time as an oncologist. It’s hard to come up with the words, she says.
“We want to fix people. If we can’t fix their cancer, we want to fix their other problems,” she says. “And I don’t think patients always want to be fixed because sometimes they want to be heard.”
She says having the chance to actually practice helped set in motion that realization.
“We all think in our head, ‘well I know what to say.’ But until someone is actually watching you in a safe environment and able say that ‘hey that was great, but did you ever think about saying this?’ You may not ever be able to ever change,” she says.
She says that means a lot because tomorrow, when she and others are back at work, there won’t be any “time outs.”
Just one shot, one chance with a patient…in a conversation that could be the one of the most important, defining ones of his or her life.