Palliatively Speaking Ep 1 - Navigating Uncertainty in Pediatric Palliative Care

Dr. Debra Lotstein, a pediatric palliative care physician and leader at UCLA reflects on her journey into pediatric palliative care, sharing how an early experience as a resident shaped her understanding of end-of-life care.  She shares a defining moment in her career when she realized that focusing solely on advanced, life saving medical interventions can overlooks what truly matters to a patient or family.  We discuss the emotional and cognitive challenges of working with seriously ill and dying children.  She tells how she “reads the room”, builds trust, and helps families navigate uncertainty.  She reminds us that pediatric palliative care is a team sport where members bring unique skills to the bedside but also support each other through tough cases.  Dr. Lotstein’s deep sense of purpose and commitment to her patients and families is evident and led her to advocate at the policy level locally and nationally to improving palliative care systems of care for children.  Her reflections offer insight into the emotional depth, ethical complexities, and profound rewards of working in pediatric palliative care. Dr. Debra Lotstein is joined by Patty Everett, the mother of Ryan, a young man with severe disabilities. Their conversation delves into the emotional and logistical challenges of caring for a child with complex medical needs and how palliative care provides critical support. Patty recounts how Dr. Lotstein guided her through many of the most difficult decisions of her life regarding carin for Ryan, breaking down the process step by step in a way that felt manageable and compassionate. We discuss the role of concurrent hospice care, which allowed Ryan to receive both standard medical treatment and palliative support simultaneously. Beyond the personal aspects of their work together, the episode highlights their shared commitment to policy advocacy, including testifying at the California State House to ensure continued palliative care access for young adults transitioning out of pediatric care.  We can see how relationships forged in difficult circumstances can lead to connection and action that may help shape the future of palliative care medicine.