Evaluating the Benefit of End-of-life Conversations in the Primary Care Setting
Alison Todd, LICSW, and Doreen Harvey, RNCC, both of the Integrated Care Management Program (iCMP)
The Serious Illness Care Program at Ariande Labs, a joint center for health systems innovation at Brigham and Women’s Hospital and the Harvard T.H. Chan School of Public Health, strives to improve the lives of people with serious illness and add value to their care by increasing meaningful conversations about their values and priorities.
In developing this program, BWH palliative care physicians Rachelle Bernacki, MD, and Susan Block, MD, along with Atul Gawande, MD, MPH, BWH surgeon and executive director of Ariadne Labs, sought to shape a systemic, transformative change in the practice of serious illness care planning by initiating meaningful conversations between clinicians and their seriously ill patients. The implementation of this program in the iCMP highlights the need for early and continuous communication with high-risk patients within their familiar medical practice.
The Serious Illness Care Program, which began as a pilot at BWH in January of 2014, is a multi-step intervention that includes training, patient selection, coaching, clinician triggering, a conversation guide, and measurement and feedback mechanisms. The training, enhanced by medical actors, was provided for interprofessional primary care teams, taught clinicians how to lead structured conversations with and elicit responses from seriously ill patients, those with a life-limiting illness and a likely one to two year prognosis. The process begins with asking the patient’s permission to discuss end-of-life care and including questions about their goals and priorities.
The program’s conversation guide includes questions such as: “What is your understanding of where you are with your illness?”; “How much information about what is likely to be ahead with your illness would you like from me?”; “What are your biggest fears and worries about the future with your health?” and “What abilities are so critical to your life that you can’t imagine living without them?”
“I appreciate having talked about my end-of-life care goals with my primary care physician,” said Jane*, a patient who participated in the Serious Illness Care Program. “It allowed me to think about what I want, have conversations with my loved ones and come to a sense of peace with the process. It was scary at first, but now I realize how valuable it is.”
As of April 2016, five primary care practices have implemented the Serious Illness Care Program, bringing the training to 41 primary care physicians, 11 nurse care coordinators and seven social workers. The response from clinicians, patients and families has been overwhelmingly positive.
Aside from improved communication, early conversations about patient goals and priorities bring many benefits for patients and their loved ones, such as enhanced goal-concordant care, time to make informed decisions, improved quality of life, higher patient satisfaction, earlier hospice care, fewer hospitalizations, better patient and family coping, eased burden of decision-making for families and improved bereavement outcomes.
“Patients and families often want to speak about the issues surrounding serious illness but are afraid or unsure how to bring them up,” said Doreen Harvey, RNCC, nurse care coordinator. “These structured conversations provide a way for patients and families to open up in a safe environment. The Serious Illness Care program is truly a model for collaborative, interdisciplinary, patient-centered quality care.”
*patient’s name has been changed