by Joshua Lakin, MD
High quality palliative care is increasingly recognized as essential for seriously ill patients, caregivers, and the health care system. The core work of palliative care, a collaborative team-based approach for improving the quality of life of all patients with serious illness, drives better performance in all elements of the quadruple aim—improving patient experience and population health, while addressing clinician experience and resource use. Additionally, it is becoming increasingly clear that delivery of high-quality palliative care is the responsibility of all clinicians. Both Susan Block and Betty Farrell recently published pieces on the Palliative in Practice blog highlighting key system, educational, and policy elements for delivery of more and better primary palliative care—by clinicians without specialty palliative care training. As critical system enhancements, training programs, and policy efforts spread, we need to amplify and refine them by drawing upon the experience of frontline clinicians participating in primary palliative care work.
Initial Experience With a Primary Palliative Care Communication Program: Easier Said Than Done
We have been implementing the Serious Illness Care Program, a multidimensional and systematic approach for improving communication about goals and priorities for seriously ill patients, in a high-risk primary care patient and clinician population for the past four years. We have seen improvement in serious illness communication, with increasing percentages of patients who had their goals and values documented in an easy to retrieve location several months before death. We are also seeing more documentation of what is most important to patients—their fears, worries, and goals, rather than a more limited focus on decisions about medical interventions. Furthermore, we are observing that the primary care clinicians are doing this work as teams—in combinations of doctors, nurses, and social workers—mirroring how specialty palliative care clinicians might tackle the challenge. Recently, one of the primary care champions in the program described a patient of hers with progressive heart failure; someone she had known for years and cared about deeply. She had a preliminary conversation with the patient early in the program, learning some about her goals and fears in the context of her unpredictable disease. Then a year and a half passed. And this doctor told me about how two nursing colleagues gently brought the patient back into her focus, highlighting how the patient was worsening and also noting the importance of engaging the patient’s trusted cardiologist. After discussing the case with the specialist and establishing a shared understanding of the patient’s worsening prognosis, the primary care team revisited the conversation after a hospitalization.
It didn’t take long, only about 15 minutes, and the patient acknowledged that she hadn’t felt like herself in a long time and was disappointed about her worsening ability to live her life. She was admitted to the hospital shortly thereafter with complications from an unrelated surgical emergency and died peacefully in the hospital.
Intertwined with the success of the communication efforts of the primary care teams, we are also observing, (through coaching and remembrance activities), that delivering primary palliative care communication can be extraordinarily challenging work—it is not simply a basic version of what specialty palliative care teams do. Stewarding conversations about patients’ goals and priorities through our health care system is emotional labor for clinicians, particularly when they have long-term relationships with their patients, and highlights clinician struggles with challenging social and health care system dynamics. All of this work must occur in the context of significant time and resource constraints. We have strategies in specialty palliative care for supporting team members, including specialty training that focuses on sustainability and resilience, a dedicated culture of interprofessional team-based work, and bereavement activities. But what resources do our colleagues, who we are asking and equipping to do primary palliative care, have at their fingertips? How can they be expected to sustainably provide the high emotional labor necessary to deliver palliative care as part of their diverse and busy practices?
Stewarding conversations about patients’ goals and priorities through our health care system is emotional labor for clinicians, particularly when they have long-term relationships with their patients, and highlights clinician struggles with challenging social and health care system dynamics.
NEXT STEPS: LEARNING FROM FRONTLINE CLINICIANS AND TRANSLATING TOOLS FROM SPECIALTY PALLIATIVE CARE
As the effort to improve primary palliative care expands, we need to learn from those delivering it what they are doing and what they need. We are taking the first steps in our system and have embarked on research to better understand practically the experiences of primary care teams having conversations about goals and values in their daily care of their seriously ill patients. We are also exploring how they work as teams to do so. Others who are doing training and running programs aimed at enhancing primary palliative care delivery could join us in helping to build a broad knowledge base about what primary palliative care work looks like for frontline clinicians and how it can be nurtured and sustained at a time of rapid growth in need and demand. With that knowledge, we can augment the resources that frontline clinicians need for delivering palliative care—such as the training, system, and policy tools that Susan Block and Betty Farrell highlight—and carry what we know from sustaining and expanding specialty palliative care to our colleagues without specialty training.
Joshua Lakin, MD, is an attending physician on the Psychosocial Oncology and Palliative Care team at the Dana – Farber Cancer Institute and Brigham and Women’s Hospital, and an Instructor in Medicine at Harvard Medical School. He is also a member of Serious Illness Care Program at Ariadne Labs.