Tough Talks –Training Clinicians on Serious Illness Conversations
A man coughs into a handkerchief, slumping a little more in his chair once he’s caught his breath. His doctor asks him if he understands his illness. The man’s voice, raspy with age, wavers as he explains the chair his wife leaves for him between their bedroom and the bathroom. Chronic lung disease makes it hard for him to breathe after years of smoking. He rests in his hallway chair to catch his breath when he gets up to use the bathroom at night. He tells his doctor he knows he’s gotten worse because his wife leaves two chairs in the hall now, a little-ways apart. A heavy silence sits between them.
“I think we should talk about what’s most important to you, what you want,” the doctor finally says.
“Okay,” the man sighs.
They discuss the man’s goals; what he can’t imagine living without; and how he feels about staying in the hospital. They talk about his wife and his relationship with his daughter.
The doctor listens, takes notes, asks questions. When they come to the end of their conversation the doctor says that this isn’t a closed book. They should continue to talk about how the man wants to live his life. Perhaps they can invite his family to join next time. They shake hands and the man rises unsteadily from his chair.
End scene—not something you usually hear in a clinical setting.
Although the conversation feels very real, it’s actually an improv lesson with a trained actor. Josh Lakin, MD, a physician from the Dana-Farber Cancer Institute, addresses the room of doctors, nurses, and other clinicians who have been watching the conversation between him and John Carozza, a medical actor. The class teaches clinicians how to have “serious illness conversations” with patients and their families.
End-of-Life as a Spectrum
Clinically, serious illnesses are defined as chronic, life threatening conditions such as cancer, Alzheimer’s, end-stage renal disease, congestive heart failure, or many others. Less than one third of patients with a serious illness discuss their goals and preferences with their clinicians. If these conversations do occur, they often take place late in the course of an illness when there is little time to translate patients’ decisions into meaningful actions.
We know that most Americans would prefer to die at home but only a small minority actually do. Our medical system traditionally focuses on end-of-life care about medical procedures and treatments rather than a patient’s values and priorities. The Partners HealthCare Serious Illness Communication Program aims to support clinicians who have patients living with a serious illness by teaching them how to have the most productive conversation about patients’ treatment options that leaves space for patients’ preferences, goals, and values. The program also builds resources and supports across the Partners system to make it easier for clinicians to have those conversations.
Before the class begins, Dr. Lakin and Dr. Rachelle Bernacki, who are both teaching this training, go around the room and ask participants how they’re feeling. The students, comprised of doctors and nurses from a wide area of specialties, share that they’re grateful, excited, nervous, interested, and overwhelmed.
Dr. Bernacki addresses the class.
“It’s okay to feel all those things,” she says. “These topics aren’t easy to talk about. And even though these are actors, this can be really hard.”
The thing that can be tricky about broaching this subject is that patients aren’t always terminally ill or weeks away from dying. Ideally, clinicians should be having these conversations in the months and even years prior to a patient’s end-of-life, rather than limiting them to the weeks and days leading up to their passing.
During the class, participants are asked to share their experiences with serious illness cases. Leslie, a nurse practitioner at Newton Wellesley, talks about how she’s seen differences in conversations between patients with cancer and patients with congestive heart failure.
“Oncologists can explain prognosis and mortality, but heart failure patients aren’t really told ‘you’ll be dead in five years.’ Those types of conversations happen too late,” she says. “I hope I can change that. I think patients want to be comfortable in their own homes if they have that option.”
Sophia, a primary care provider at Cooley Dickinson, shares how hard it can be to set realistic expectations. “I feel like I take her hope away,” she says, recounting her experience with a current patient battling cancer.
A Roadmap for Conversations
After some personal reflection, the class dives into a more traditional class structure. Drs. Bernacki and Lakin present slides covering statistics about end-of-life care, an overview of their published research on serious illness conversations (see below), a framework for goals, and do’s and don’ts for how to approach difficult questions. They also review a helpful tool included in the trainings—the Serious Illness Conversation Guide.
The guide was developed by Ariadne Labs in collaboration with Brigham and Women’s and Dana-Farber clinicians, including Drs. Bernacki and Lakin, and many other clinicians and patients in the Partners community. It’s meant to provide structure and language to navigate serious illness conversations and helps prompt clinicians to ask the appropriate questions. Not only is it a useful roadmap, it takes some of the pressure off the clinician to come up with the “right” language during what is often an emotionally charged interaction. One of the most critical things, Dr. Bernacki explains, is to listen.
“The guide allows clinicians to be human and part of the conversation,” she says.
Putting it to Practice
One of the most unique aspects to the trainings is the small-group role-playing exercise. Participants break off into small groups of about five or six people to practice talking through the guide with an actor. The two actors at this training—John and Rena—have multiple characters to choose from. Each one has a different backstory, personality, and clinical case-file. There’s an agitated, stubborn woman who won’t get treatment for a life-threatening wound out of fear her foot will be amputated. A cheery woman who has congestive heart failure but is otherwise relatively healthy. A no-nonsense, retired construction worker with a laundry list of conditions.
Each character presents the clinicians with a different set of problems to overcome. The actors do an impressive job of making it as realistic as possible. With each new personality the actors change their voices, accents, posture, and even make small physical adjustments like rolling up their sleeves or taking off their sweater.
In addition to these subtle shifts in persona, the actors go into the conversation with only a rough guideline of what they’ll say. Their words and actions are non-scripted and improvisational. At one point, Rena starts crying and can’t speak. During another conversation, John shuts down one the doctors, irritated by the phrasing of a question. These surprises are not meant to de-rail the session, but help the clinicians learn to prepare for the unexpected and pivot the conversation if necessary.
“It’s hard to keep track of all the points in the conversation and find a flow,” says Kei, an emergency room physician from Brigham and Women’s. “It was so uncomfortable when John was just staring at me and not speaking. But I let the silence happen.”
A Culture Shift
During the sessions, the instructors can tap in and call a time-out. This allows them to give feedback to participants in real time. They point out things that were working well and why they were working; things like body language or the phrasing of a question. Participants can also ask specific questions about things that concerned them and get the perspective of the instructors, their fellow participants, as well as the actors.
“I’ve seen lots of trainings,” says John, who has participated as an actor for the serious illness trainings since 2011. “I think the clinicians critique themselves the hardest.”
Over 1500 clinicians across the Partners system have attended a serious illness training. Included in that total is nearly every primary care physician, oncologist, cardiologist and other select specialties. The hope is that these trainings will not only give clinicians the tools they need to approach patients, but little by little they will shift the culture to be more open to talking about patients’ goals and wishes around end-of-life. The more comfortable clinicians are at addressing these topics, the more they will see these conversations as a normalized, ongoing dialogue.
“I have to remind myself that a conversation is not necessarily A to B,” says Kris, a visiting palliative care nurse from Cooley Dickinson and participant at the training. “Just talking and having open communication, that’s a successful conversation. Even if you don’t get all the answers, it’s a start.”
Published Research on the Serious Illness Communication Program:
Bernacki, R, Block, R. Communication about Serious Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med. 2014; 174(12):1994-2003. https://www.ncbi.nlm.nih.gov/pubmed/25330167
Bernacki, R, Hutchings, M, Vick, J; Smith, G, Paladino, J, Lipsitz, S, Gawande, A Block, SD. Development of the Serious Illness Care Program: A Randomized Controlled Trial of a Palliative Care Communication Intervention. BMJ Open 2015: 5(10). e009032 doi:10.1136/bmjopen-2015-009032. https://www.ncbi.nlm.nih.gov/pubmed/26443662
Billings, JA, Bernacki R. Strategic Targeting of Advance Care Planning Interventions: The Goldilocks Phenomenon. JAMA Internal Medicine 2014; 174(4):620-4. https://www.ncbi.nlm.nih.gov/pubmed/24493203
Lakin JR, Block SD, Billings JA, Koritsanszky LA, Cunningham R, Wichmann L, Harvey D, Lamey J, Bernacki RE. Improving Communication About Serious Illness in Primary Care: A Review. JAMA Intern Med. 2016 Sep 1; 176(9):1380-7. PMID: 27398990. https://www.ncbi.nlm.nih.gov/pubmed/27398990
Bernacki, R*, Paladino, J*, Neville, BA, Hutchings, M, Kavanagh, J, Geerse, Lakin, J, Sanders, J, Miller, K, Lipsitz, S, Gawande, A, Block, S. Effect of the Serious Illness Care Program in Outpatient Oncology. JAMA Intern Med. 2019 Mar 14. PMID: 30870563. https://www.ncbi.nlm.nih.gov/pubmed/30870563