In pursuit of joy: What you don’t know about children’s palliative care at McMaster

McMaster University’s Dave Lysecki is leading a transformative approach to pediatric palliative medicine, one family at a time.  

As a palliative specialist at McMaster Children’s Hospital (MCH) and the inaugural medical director of Keaton’s House – Paul Paletta Children’s Hospice, set to open in 2026 – Lysecki is dedicated to improving the quality of life for children with serious health conditions. His team’s focus is ensuring children receive the right care, at the right time, and in the right setting—not just in their final days, but throughout their journey with complex illnesses.

“There’s a common misconception that palliative care is only for the dying,” Lysecki explains. “But really, it’s about living fully, right up to the last moment and supporting families to live fully and carry the memory of their loved one with them.”

At the heart of Lysecki’s approach is a commitment to alleviating suffering while fostering opportunities for joy. This includes not only medical care but also supporting families in navigating obstacles to quality of life, such as attending school or creating moments of celebration.

“It’s about making every day the best it can be—whether that’s reducing pain, facilitating meaningful experiences, or creating a legacy for the child,” says Lysecki.

As a researcher, Lysecki is helping to reshape standard healthcare metrics, shifting the focus from the binary outcomes of life and death to the quality of the experience. This includes tracking factors like family satisfaction, bereavement follow-up, and access to care closer to home.

“Healthcare often measures morbidity and mortality, but palliative medicine looks beyond that,” Lysecki says. “We ask, ‘How did it feel? What was the family’s experience?’”

Advocacy is crucial to this work, as families often face more immediate concerns than providing feedback after the loss of a child. According to Lysecki, without their voices, these stories can go unheard, making it essential to actively seek out their experiences and use them to inform and improve future care.

Yet, stories alone aren’t enough. Data and research are critical to proving the effectiveness of palliative medicine programs. By collaborating with ICES, an independent, not-for-profit research and analytics institute, Lysecki’s team is working to measure key indicators like hospitalizations, Intensive Care Unit (ICU) stays, and potentially unnecessary procedures in the last year of life.

His team’s work, funded in part by McMaster’s Department of Pediatrics’ Core Builder Grant, measures the impact of pediatric palliative services in South-Central Ontario. Early findings show that following the program’s initiation at MCH, children in their last year of life spent 44 per cent less time in the ICU and had 37 per cent fewer healthcare costs.

“While cost savings are not the aim, what we’ve found is that when children and their families receive the right care—care that aligns with their goals—there is a positive impact across the board,” says Lysecki. “It’s not about less care. It’s about better, more appropriate care.”

As he prepares to present his latest research findings at an international conference in Rome, Lysecki remains optimistic about the future of pediatric palliative medicine.

“There’s always more we can do,” says Lysecki. “For us, it’s about making sure that every child and every family gets the care they need—so that even in the toughest times, there’s a focus on living, on joy, and on making every day count.”