Can You ‘Make the Case’ for Pediatric Palliative Care?

By Alice Stafford, MA ISD
Education Program Manager
Center to Advance Palliative Care (CAPC)

Over the past year, CAPC has gathered perspectives from leadership at national children’s hospitals to identify recurring themes about the value of pediatric palliative care. Findings from this interview series were synthesized in a March 2018 symposium presented at the American Academy of Hospice and Palliative Medicine’s and Hospice and Palliative Nurse Association’s Annual Assembly in the presentation, “Making the Case for the C-Suite: Using Leadership Insights and Strategic Resources to Put Your Pediatric palliative care Program in Prime Time”.

With generous support from the Cameron and Hayden Lord Foundation, and collaborative input from several leading pediatric palliative care program leaders, the symposium was delivered by:

  • James Block, MD – Pediatrician and Institutional Leader, previously President and CEO of the Johns Hopkins Health System and the Johns Hopkins Hospital, University Hospitals of Cleveland, Case Western Reserve University, and President of Rochester Area Hospital Corporation. Currently, Dr. Block is a consulting advisor to CAPC and the National Palliative Care Research Center
  • Joanne Wolfe, MD, MPH Director, Pediatric Palliative Care at Boston Children’s Hospital and Division Chief, Pediatric Palliative Care Service in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute
  • Rebecca Kirch, JD –Executive Vice President of Healthcare Quality and Value for the National Patient Advocate Foundation and a consulting advisor to CAPC on health policy and Pediatric Palliative Care initiatives

Rebecca Kirch, James Block, and Joanne Wolfe

For those who were not in attendance, we wanted to ensure that everyone within the palliative care community (and beyond!) had access to the learnings from the interview series and presentation. We are excited to share a blog post summarizing the learnings, below.


Where to Begin

Our team set out on a mission to learn from hospital leaders and executives in the C-suite (CEOs, COOs, Physicians-in-Chief, and Department Chairs) about how to make the case for pediatric palliative care. We wanted to know what caused these leaders to provide sustained institutional support for pediatric palliative care—what data points and messaging about pediatric palliative care do they find compelling?

To achieve this, seven pediatric palliative care leaders and eleven hospital executives were interviewed across six children’s hospitals: Akron Children’s Hospital, Boston Children’s Hospital, Children’s Hospital of Philadelphia (CHOP), Children’s Hospital Los Angeles, St. Jude Children’s Research Hospital, and Texas Children’s Hospital. The C-suite leaders who were interviewed have spoken, and the verdict is in: Pediatric palliative care is a ‘must-have’. And, here is their advice on how to make the case…

The Interviews

Jim Block and Rebecca Kirch asked each of the C-suite executives about the reasons behind their hospital’s support for pediatric palliative care. What were their key pressure points and how did they see palliative care as particularly helpful in addressing those concerns? What influenced their decisions regarding resource allocation and investment for pediatric palliative care? What were the success factors that created a business case for pediatric palliative care at their institutions?

Palliative Care Equals Quality

The most encouraging recurring theme in the interviews was the perception that pediatric palliative care is increasingly becoming recognized as the standard of practice, because palliative care equals quality care. The Physician-in-Chief at CHOP shared:

“There’s a strong rationale for hospital investment in pediatric palliative care because it fosters effective communication, enhances quality care, and improves the patient and family experience – this really is an investment in delivering high quality care.” 

– Dr. Joe St. Geme, Physician-in-Chief, CHOP

It’s Not About the Money

A striking theme was that none of the interviewees talked about the need for pediatric palliative care to save the hospital money or be a revenue driver in order to justify institutional support. It’s not all about the money. If not for the money, then what is driving them to implement their organizations’ pediatric palliative care programs? The Physician-in-Chief at Texas Children’s Hospital could not have said it better:

“Regardless of whether it generates a lot of revenue, it’s just mission critical. Families need it, critically ill children, children with chronic disease, children with complex medical problems, they all need it. It’s absolutely essential to their recovery, to their health, and in some cases to death with dignity. It’s one of those ‘gotta do’ things. It’s not optional. It’s mandatory.”                                                      

– Dr. Mark Kline, Physician-in-Chief, Texas Children’s Hospital

The Family Story Sticks

Family support and satisfaction were consistently identified as being important pediatric palliative care outcomes for organization leaders. For pediatric palliative care teams, this means we should listen to what our families have to say about pediatric palliative care, and share those narratives broadly and directly—stories from families can be useful with C-suite executives as well as with donors. Families are credible messengers with great influence when it comes to talking about the value of pediatric palliative care. Give their stories a voice. Just ask the CEO of Akron Children’s Hospital:

“If you ever have any doubt about the value of this program, believe me; there are families that I’ve met, and two minutes into that conversation, for you to say there’s not value in palliative care would be impossible.”

– William Considine, CEO, Akron Children’s Hospital

Benefits for Staff

It was discussed that pediatric palliative care has the added benefits of providing staff support and preventing burnout across clinical specialty teams. The CEOs of CHOP and Akron Children’s Hospital talked about how their pediatric palliative care teams have empowered frontline clinicians by training them in core palliative care skills to improve their communication with families, and to avoid moral distress and professional burnout.

“There are inherent rewards in practicing, but also stresses. Pediatric palliative care makes that inherent stress better, and that support is a very helpful element of preventing burnout among staff. “

– Madeline Bell, President and CEO of CHOP

“Can we put a value on the service in terms of what it means relative to healthcare costs and other kinds of things? For example, if pediatric palliative care has a positive effect on your workforce and lessens their stress, reduces burnout, and maybe reduces turnover, there are some dollar savings there.”

– William Considine, CEO, Akron Children’s Hospital                                                            

In Summary

When making the case for pediatric palliative care to C-suite executives, department chairs, and other institutional leadership, remember to include and reinforce these three talking points in your presentation:

  1. Family feedback – Specify exactly how pediatric palliative care services made a difference for families. Remember, they have a lot to say and are great messengers, particularly about patient and family satisfaction.
  2. Staffing benefits – Describe how palliative care prevents burnout, lessens staff stress, and reduces turnover.
  3. Palliative care is the standard of practice – In the words of William Considine, “If you want to care for children in a quality way today, pediatric palliative care has to be part of the standard of practice.”

Also, remember:

  1. Conversations about palliative care should not all be about the money – While there are proven financial benefits to palliative care, the C-suite executives that CAPC interviewed rallied around the issues of quality and support for staff.
  2. Harness every opportunity to champion pediatric palliative care – Think of every conversation as an opportunity to gracefully and firmly educate audiences about pediatric palliative care and its value proposition, emphasizing quality.

In the meantime, CAPC will continue cultivating relationships with key stakeholders who engaged in this project to help the field make its best case, including the Association of Medical School Pediatric Department Chairs (AMSPDC), Children’s Hospital Association, American Academy of Pediatrics, and others. Please stay tuned for additional updates and progress reports! And, keep an eye out for future Palliative in Practice posts with more excerpts from the interviews with children’s hospital executives.

Helpful Resources for Pediatric Palliative Care Teams

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