Clinically speaking, the 164 caregivers gathered at the Hynes Convention Center for three days at the end of June was an unusual bunch.
Oncologists, nephrologists, palliative care experts, sports medicine doctors, social workers, OB/GYNs, pharmacists, primary care physicians, nurses, chaplains and even one veterinarian, among others, representing 9 countries, 27 states, 80 institutions, and 17 different specialities. They shared two things in common: they care for patients with a serious illness and they all want to do it better.
Hosted by Ariadne Labs, the Harvard Medical School Center for Palliative Care and the Dana-Farber Cancer Institute, this continuing medical education course was not aimed at teaching new medical procedures for serious illness. Rather, the goal of this hands-on experience was to learn how to talk to patients about what matters most in their lives and how to introduce system-wide change for better serious illness care at participants’ home institutions using the Ariadne Labs Serious Illness Care Program.
“The goal is every patient who needs these conversations has them every single time, no matter how hard it is,” said Dr. Rachelle Bernacki, a palliative care doctor and geriatrician at Dana-Farber Cancer Institute, associate director of the program and co-director of the course.
Absent, delayed, or inadequate communication about priorities and wishes results in many patients with serious illness not receiving the care they want at the end of life, experiencing unnecessary suffering, and dying in settings not of their choice. The Serious Illness Care Program at Ariadne Labs offers a Conversation Guide to help clinicians have these difficult conversations with patients and a system-level intervention to support clinicians and patients.
Bernacki said the Guide helps to achieve a higher level of baseline performance for clinicians. She noted that clinicians know these conversations need to happen but there are many barriers inhibiting them from taking place. “We’re trying to close the know-do gap. We know how to do something but we don’t do it and there are a lot of reasons for that,” Bernacki said.
Barriers occur at the system, clinician, family, and patient level, Bernacki told the audience, but having these conversations is crucial because they can lead to better quality of life. Bernacki added, “Earlier conversations about patients goals and priorities in serious illness are associated with enhanced goal-concordant care, higher patient satisfaction, fewer hospitalizations, better patient and family coping, and an eased burden of decision-making for families.”
Ariadne Labs Serious Illness Care Program Director Dr. Susan Block, a palliative care doctor and psychiatrist with 35 years experience in the field, opened the conference telling clinicians they must work together to break down the barriers around these conversations. “It’s really hard to do this kind of work alone. That is why we are enlisting you all as the change agents needed to accomplish this work,” Block said. “It’s very important to recognize change is a long game and we hope you will stay in the long game with us.”
In his keynote address, Ariadne Labs Executive Director Dr. Atul Gawande spoke from personal experience, reflecting on how medical training had taught him how to solve problems, not how to have these kinds of conversations. “We did not learn how to deal with non-fixable problems. I felt incompetent and incapable,” Gawande said.
As part of writing his New York Times bestseller, Being Mortal, Gawande interviewed hundreds of individuals — patients, clinicians and family members — about how to better care for those with serious illness. What he learned, he said, is, “People have priorities and goals for us to serve beyond just living longer.”
In developing the Serious Illness Care Program, Gawande, Block and their team discovered many systemic barriers to having these conversations: difficulty in identifying which patients would benefit from conversations, lack of clinician training in communication skills and patient-centered conversations, clinicians’ fear of upsetting patients, inconsistent documentation of these conversations in health records, and lack of standard best practices around serious illness communication.
“We have to make it simpler to do the right thing,” Gawande said, because the goal of serious illness care is to “help patients live a good life, all the way to the end.”
To achieve this goal, the conference participants began learning how to use the Serious Illness Conversation Guide themselves. Small group skills practice allowed clinicians the opportunity to practice having these difficult conversations with one another and with hired actors role playing a patient, and to receive feedback about how to improve their communication. The second and third day of the conference gave participants the ability to understand how they could introduce these conversations with their colleagues and in their health systems to ensure everyone who should talk about goals and priorities was having a meaningful conversation with their clinician.
Dr. Bill Berry, the chief medical officer of Ariadne Labs, used his work implementing the WHO Surgical Safety Checklist to advise participants how to introduce the Serious Illness Care Program in their home institutions. He encouraged participants to find at least one champion at their home facility to partner with because “it takes a team to support this conversation.”
The process does not end there, though, Berry noted. He stated that it was not enough to give people the conversation guide; clinicians needed to continuously check in and receive feedback about using the Guide. “Never stop learning. Never stop seeking feedback,” Berry told the audience.
Participants were then able to see first-hand how to train others to use the Conversation Guide during the “train the trainer” portion of the conference. In a demonstration from Ariadne Labs faculty members, Drs. Justin Sanders and Josh Lakin, both palliative care physicians at the Dana-Farber Cancer Institute, role played a scenario in which Sanders played a clinician learning to use the Guide for the first time, while Lakin played a first-time trainer practicing how to give feedback to a learner.
The conference ended with everyone on their feet, moving around the room to vote for which barriers to implementation of the program they saw as the toughest to overcome once they returned home. Each person walked away with one goal they could complete by the end of the following week and advice from fellow participants on how to achieve these goals.
To conclude the conference, Block reminded the clinicians that they have a community at Ariadne Labs supporting them to have more, better, and earlier conversations with patients about what matters most to them.
—Story by Emily Sokol; Photos by James Sachetta