This blog post is part of a series featuring the Cambia Health Foundation’s Sojourns Scholar Leadership Program. The initiative is designed to identify, cultivate and advance the next generation of palliative care leaders. The program includes physicians, nurses, social workers, physician assistants, chaplains, psychologists, pharmacists and other emerging health system leaders who are developing the field.
The first two blog posts in this series focus on pediatric palliative care. The Foundation believes it is critical to expand the field of experts in this area and recently published a white paper titled “Pediatric Palliative Care: Making Every Day the Best It Can Be.” In addition, the Foundation created the Cambia Health Foundation Endowed Chair in Pediatric Palliative Care of OHSU Doernbecher Children’s Hospital’s Bridges pediatric palliative care program, only the third chair in pediatric palliative care in the United States.
Dr. Renee Boss
- The Johns Hopkins University School of Medicine & Berman Institute of Bioethics, Baltimore
- Topic: Supporting families, clinicians and medical teams with communication and decision-making for infants with congenital heart disease.
- Goal: Enhance families’ abilities to engage with the medical team over time around overall goals of care during prolonged ICU hospitalizations.
Renee: I am a physician who cares for infants in the ICU and many of those infants are there for months. It can be challenging to initiate and maintain a positive flow of communication with parents over those very long hospitalizations, as the infants’ medical conditions become more complex and their prognosis uncertain. Establishing trust and agreeing on goals of care is often challenging. For my Sojourns Scholar project, we worked to develop tools to track and study communication during an infant’s long ICU stay and then trialed communication tools aimed at both the parents and the clinicians to see if we could foster more meaningful discussions about care goals over time.
What have you learned from the project that could help improve pediatric palliative care?
Renee: Tracking the quality of communication over time with multiple clinicians caring for any one patient in the ICU is challenging. We looked at how to create a safe space for clinicians to learn specific communication skills, as well as prepare families for difficult conversations. This helps them prioritize their most important questions and be able to process the answers.
Did you encounter any unexpected outcomes or surprises?
Renee: I was pleasantly surprised by the willingness and interest among clinicians to improve their communication skills. Many realize that their training in this area has been incomplete and they want to do a better job.
How do you feel you have changed as a leader in the field due to your experience in the Sojourns Scholar Leadership Program?
Renee: One of the main benefits of being a Sojourns Scholar is that it has helped me broaden my research skills beyond my own individual projects. As a result, I have become a more effective research team leader and research mentor.
What do you attribute the change to?
Renee: The belief on the part of the Cambia Health Foundation and the Sojourns Scholar program that palliative care leadership skills are needed and investing in them will extend the impact beyond the reach of individual scholars.