Sojourns Scholar Impact: Pediatric palliative care

Sojourns Scholar Impact: Improving communication with families in pediatric palliative care

This blog post is the first in 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. Jennifer Walter
  • Children’s Hospital of Philadelphia
  • Topic: Improving Goals of Care Conversations in the Pediatric Cardiac Intensive Care Unit.
  • Goal: Develop a communications skills training program for pediatric CICU. 

What is the focus of your Sojourns Scholar project?
Jennifer: I am an ethics consultant and pediatric palliative care physician, and I work with interprofessional clinical teams across the hospital. I saw that teams made up of various disciplines including physicians, social workers, nurses and chaplains utilized their team members differently in how they support families. There are no clear guidelines for how interprofessional teams should work together to support families of children with serious illness in decision-making.Through the Sojourns Scholar program, I am developing guidelines for what a high functioning team does to prepare for and conduct family meetings. My research is based in the pediatric cardiac intensive care unit where I plan to work with interprofessional teams in supporting families of children with complex congenital heart disease.
What have you learned from the project that could help improve pediatric palliative care?
Jennifer: It is important to have a coordinated response from the clinical team to the family. I found that physicians dominate interprofessional team conversations, both with and without families present, but non-physician members have many insights to offer. For instance, social workers provided the most comprehensive assessment of parental needs and concerns.
I saw that there are many missed opportunities for addressing family needs in team and family meetings. On average, the clinical team responds to parental expressions of emotion with an empathic response only half the time. The team very rarely asks parents how much information they want, nor do they assess the parents’ understanding of their child’s condition before providing the latest information.
Before meeting with a family, team members need to coordinate their actions and agree on what their goals are for the family meeting.Each participating team member should understand what roles need to be performed, determine their contributions to optimize the skills of each member, and support each other in performing those tasks.

Did you encounter any unexpected outcomes or surprises?
Jennifer: I was surprised to find that the clinical teams rarely ask the family what their concerns are prior to sitting down at the family meeting. This makes it difficult for the team to address the family’s concerns in the team-only meeting. Families often report being frustrated when they are told conflicting answers to the same question by different team members. The team-only meeting offers an important opportunity to agree on how information is shared with the family to avoid conflicting information.
We also found that in one-third of the team’s discussion of care plans, physicians and non-physicians had different opinions about how collaborative the process should be. Interestingly, in many of these instances the physicians perceived the process to be more collaborative than the non-physicians.
How do you feel you have changed as a leader in the field due to your experience in the Sojourns Scholar Leadership Program?
Jennifer: I have become more confident and successful in my ability to advocate for the work I am doing both within my institution and nationally. I also have gained the ability to articulate a vision for how my research can change clinical practice in meaningful ways.
What do you attribute the change to?
Jennifer: Because I am not a cardiac intensivist, I needed to convince the clinicians and researchers that my work was intended to align with their goal of improving their care of patients. I received incredibly helpful guidance from my Sojourns mentors about how to build collaborative relationships across disciplines and how to do research that would make the department willing to try something innovative. I currently have strong institutional and departmental support to test an intervention that will inform the ways interprofessional teams work together to support parental decision making.  The mentorship I have received has been essential to expanding my vision for the work I am doing and learning to describe its significance in a more compelling way.