Death and Dying in PICU: Bringing academic focus and wisdom to frontline care

Talking about death can be uncomfortable in children’s hospitals. Clinicians, parents and families think about it, worry about it, and work tirelessly to resist/oppose it. Fortunately, most never have to experience it. In the case of critical childhood illness, new and enhanced curative treatments have provided realistic hope for survival and improved outcomes. However, the reality is that 5 per cent of paediatric intensive care unit (PICU) patients die in the PICU at SickKids each year.

Providing high quality care to dying children and their families is an honour, a privilege and a responsibility that we embrace in critical care. We know it’s important to provide quality care to children and their families in all phases of illness. The death of each child is profound, with implications that extend beyond the events of the death and can impact the family and the health-care team for years.

Providing high-quality end-of-life care is a fundamental skill for all clinicians working in critical care settings. Having found limited practical guidance in critical illness end-of-life care for frontline providers, we set out to address this important gap. However, we couldn’t do this alone. We needed to bring together decades of experience, the expertise of leading scholars and the focus of those passionate about bridging the gap between knowledge and practice. An international collaboration was born and experts from around the world began crafting the 17 articles of the Death & Dying in Paediatric ICU supplement of Pediatric Critical Care Medicine.

As the supplement editors, our role was to bring together the 39 leading clinicians and scientists who contributed to the supplement. Our primary objective was to ensure each individual article contributed evidence-informed guidance for frontline providers – and that the guidance was articulated in an accessible and practical manner.

As we moved deeper into the work and reflected on our collective experiences in caring for dying children, the things that we knew were most important became clear. We identified how the experience of death is unique in different circumstances; where therapy is withdrawn, when active therapies are continued, where organ donation is pursued and where death outside the PICU environment is desired. Each of these end-of-life situations is addressed in the supplement. Each article’s goal is to enable frontline practitioners to better understand and appreciate nuances, and to catalyze reflection about how they can best provide compassionate, evidence-informed care at the end of life.

The 17 articles also provide a framework for understanding the ethical tensions of death as part of childhood critical illness, plus approaches to communication and building relationships with families and clinical teams to realize best end-of-life care. The international experience of paediatric end-of-life care is explored in a series of contributions by senior clinicians from five continents. Finally, the supplement offers information to support the health and wellbeing of providers, and presents a forward-looking view of the training and cross-training of future practitioners in the PICU.  

The Pediatric Critical Care Medicine supplement is an important beginning that builds on the SickKids Critical Care Program’s tradition of advancing careful, compassionate evidence-informed care of critically ill children and families. It has been - and continues to be - a privilege for us to lead the creation of this resource for providers in continuing the tradition of leadership and innovation of our program.

This work is supported by the Robin DeVerteuil Foundation. Supplement articles are available as a free download.