Championing Compassionate Care An Interview with Jonathan Cottor, Founder of the National Center for Pediatric Palliative Care Homes

In this powerful interview, Jonathan Cottor, MBA, MPH, and Founder of the National Center for Pediatric Palliative Care Homes, shares insights drawn from his journey with his late son Ryan, diagnosed with Spinal Muscular Atrophy at nine months. Jonathan’s experience led him to establish Ryan House and now the National Center for Pediatric Palliative Care Homes, aiming to provide families with compassionate care in the most challenging times. Here, he speaks on the future of bereavement care, the essential role of community-based support, and his vision of a “gold standard” for compassionate pediatric palliative care across the U.S.

From addressing the gaps in bereavement support to advocating for child-centered healthcare reforms, Jonathan offers a roadmap for anyone committed to improving end-of-life care for children and families. Join us as we explore his inspiring journey, where dedication, resilience, and empathy have ignited transformative change.

1) What inspired you to challenge the status quo and advocate for a higher standard of compassionate care? How did Ryan’s journey shape this vision?

Our second son Ryan was diagnosed with a life-limiting condition, Spinal Muscular Atrophy (SMA) at 9 months and not expected to live to his second birthday. Our family journey, and the support we received from Helen House while living in London, England profoundly shaped my vision for pediatric palliative care. Returning to Arizona and witnessing firsthand the gaps in compassionate care for families like ours was a call to action. Ryan needed more than clinical support; we needed a place where he, and our family, could experience comfort, dignity, and trusted overnight respite along this incredibly difficult path. This led to the creation of Ryan House, a pioneering community-based pediatric palliative and respite care model. Our goal became to bring Helen House to Phoenix – nothing more, but nothing less. Through this, I became dedicated to transforming our children’s healthcare system to remove barriers and improve the standard of care so every family navigating complex medical needs could access holistic, child-centered support.

2) Where do you see the future of bereavement care heading? Are there areas where standardization could enhance support for families?

Children are not supposed to die, yet sadly in the U.S. a child dies every twenty minutes from complex medical conditions. While this is alarming, it is a small number compared to adult deaths each year which is one reason our US healthcare system is predominantly focused on elder care. Twenty years ago, when my son was diagnosed, the field of pediatric palliative and hospice care was very much in its infancy. Today, most Children’s Hospitals throughout the U.S. have pediatric palliative care teams, some of which have developed strong levels of experience and expertise. However, there remains a significant gap in community-based support for medically fragile children and their families when the child is living at home. Pediatric specialized services such as anticipatory grief, respite, hospice, and bereavement are severely lacking. Reframing the children’s healthcare system to more appropriately create health facility licenses, regulations, and service payment models that support community-based pediatric palliative care programs will greatly stimulate the scaling of providers and close this service gap that families so desperately need. 

3) How can organizations set a new “gold standard” for supporting bereaved families and drive impactful change?

The field of pediatric palliative care has advanced quickly, especially over the past five to ten years, but we still have a long way to go. My belief is that there is a strong willingness of practitioners and programs to share their experiences and successes though evidence-based published research, and through collaborative webinars, panels, and networking. Even “best practice” programs that have been delivering these areas of care, particularly those in England that began decades ago, are still refining and learning so it would seem that true care “gold standards” may still be in the formation stages? My recommendation to any program interested in developing a specialized program for supporting bereaved families would be to actively seek out others doing the same to share insights and collaborate. Every child and family is unique, and these journeys are brutal so I applaud anyone pursuing the establishment or improving a program to support them.   

4) What challenges have you faced in establishing community-based models like the National Center for Pediatric Palliative Care Homes and “Children’s Respite Homes of America,” and how do you overcome them?

Caring for children with complex medical needs requires a family-centered approach that supports both the child and parents. Most of our healthcare system focuses on adults, forcing pediatric providers to fit into frameworks that don’t meet the needs of children. This makes it harder to open and run community-based pediatric-focused respite and end of life care programs.

We need pediatric-specific facilities that allows respite and palliative care homes to provide a wide range of services—from nursing care to emotional support—all under one framework.

• The problem: Current state licensing rules provider payment structures are designed for adults, not children, making it hard to offer holistic care.
• The solution: Create pediatric-specific licenses and provider payment structures that allow providers to offer respite care, emotional support, and family counseling.

National Center for Pediatric Palliative Care Homes is organized around three pillars of activity: education and awareness, advocacy, and community building. Our growing coalition of 37 passionate community leaders and programs across 25 states is unifying under the “Children’s Respite Homes of America” program brand for a louder shared voice for change with Federal and State level policymakers.   

5) What advice would you offer to leaders looking to innovate in hospice, palliative, and bereavement care?

My advice is to keep the child and family perspective at the heart of every decision. Innovation in this field often requires tackling regulatory and funding challenges, but staying grounded in the mission can help leaders persevere. Building a strong network, leveraging community support, and being willing to challenge established norms are also essential. Change for pediatric hospice and palliative care is complex, but with a clear, compassionate vision, passionate leaders can drive meaningful, systemic improvements.

Jonathan Cottor’s journey and dedication to pediatric palliative and bereavement care offer powerful insights into what it means to truly support families facing the most challenging moments of their lives. His commitment to transforming pediatric care—ensuring it includes compassionate, community-based, family-centered services—is a reminder of how much impact one person’s vision can have on a field. By advocating for systemic changes, building collaboration, and pushing for a higher standard of care, Jonathan has helped pave the way for future generations to receive more thoughtful and accessible support.

As healthcare organizations, policymakers, and communities continue to reimagine what pediatric palliative care can look like, Jonathan’s work with the National Center for Pediatric Palliative Care Homes and “Children’s Respite Homes of America” serves as a guiding light. His message is clear: compassionate care must be a priority, and it’s up to all of us to create a system where families navigating complex medical needs find the support they deserve.

For leaders in death care and healthcare alike, Jonathan’s story is a call to action—to work toward a “gold standard” of care that meets families where they are and honors the profound, unique journey of each child.

Learn more about the incredible work happening at Ryan House at https://ryanhouse.org/