More SickKids families are choosing to have their child’s end-of-life care outside of critical care units

It’s a sad fact in paediatric hospitals that some children will not recover from their illnesses, and that some lives will be cut tragically short. As clinicians at The Hospital for Sick Children (SickKids) who work with children and families through some of their most difficult moments, we strive to support families as best we can as they approach their child’s end-of-life care.

Over the course of a few generations, there has been quite a change in how and where our society cares for the dying. For centuries, death, like birth, was something that occurred at home in the company of family and members of one’s community, often with the assistance of a physician. Even at the beginning of our own modern era of medicine, it was rare to find patients with conditions that clearly could not be cured languishing in hospital, awaiting death. But just as efforts to improve outcomes for infants and mothers shifted the birthing process to the inpatient setting, attempts to decrease suffering at end of life have shifted the location of death to the hospital as well. In fact, according to Statistics Canada nearly 70 per cent of all Canadians now die in hospital.

Paediatric end-of-life care is just as likely, if not more so, to occur in hospital. But differences between children and adults begin to emerge when one looks closer at the specific location of death within the hospital – studies consistently show that most children die in the Intensive Care Unit (ICU). Many of these deaths are the result of unexpected acute processes, including trauma, which understandably result in an intensive care admission. But the ICU is also the most likely location of end-of-life care for children whose death might be considered expected or foreseeable.  And yet there’s been a sense that a new shift in the location of death might be taking place within the hospital; it seems like more families are choosing to have their child’s end-of-life care on the wards.

Our research group is the first to study this hypothesis on the General Paediatrics wards, and the results were published in the May 2017 issue of Paediatrics & Child Health. We examined all “General Pediatric” inpatient deaths at SicKKids over three time periods – 1998, 2005 and 2012 (patients were included if their underlying diagnosis would have normally resulted in an admission to a General Paediatrics ward; patients were excluded if they were admitted for cancer; primary cardiac, renal or respiratory disease; trauma; transplant; surgical conditions; or otherwise requiring intensive care). We found a seven-fold increase in the proportion of patients who died on General Paediatrics wards between 1998 and 2005, from 5.7 per cent to 40.7 per cent (there was no significant change from 2005 to 2012). This shift coincided with a significant increase in the proportion of children with a “no CPR” order at the time of death and earlier decisions to put such an order in place. Finally, while less than 10 per cent of the children who died in hospital in 1998 had palliative care consultations, this had increased to just under 74 per cent by 2012.

These findings are consistent with a growing trend in paediatrics – families of patients with life-limiting conditions are increasingly engaging in discussions about goals of care with health-care providers prior to their child’s death. The ICU has been the most common location of death in children, typically following the withdrawal of life-sustaining treatment, because it is the default. But when families are given an opportunity to consider what matters most to them as their child’s end of life nears, many have strong opinions about what they want and what they don’t. When families understand the limitations of CPR, most make the decision to forgo attempts. All families want their child’s comfort maximized, suffering to be alleviated, and to find opportunities to promote quality of life; it is not surprising that more families than ever before are being referred to palliative care, and that this is happening much earlier in the child’s journey, often well before the end of the child’s life. Finally, while some families choose the hospital as the preferred location of their child’s death, rarely does this indicate a preference to be in the ICU. Rather, in our experience it indicates a desire to have continuous access to medical professionals with whom they often have a long and trusted relationship, such as their “family” on the General Paediatrics wards (or Haematology/Oncology, Cardiology, etc.).  

While this shift in end-of-life care should be seen as a positive development, it demands consideration of the need for additional resources and education. The SickKids palliative care service, the Paediatric Advanced Care Team (PACT), has experienced a 100 per cent increase in referrals over the past six years. This is not an indication that more children are dying; it’s an indication that more families are accessing opportunities to help ensure their child can live life to the fullest until they die. At the time of death, our Pathways Grief Support Program ensures that our bereaved families, as well as SickKids staff, are offered the support they need.

Death has always been a part of life in ICUs, where strong mechanisms are in place to support families and staff. It will be necessary to ensure that staff who have the opportunity to care for children at the end of life in non-critical care areas of the hospital, feel comfortable and confident in doing so. When they do, we are certain that they will regard participating in such care as the deep honour that we have always found it to be.

Dr. Adam Rapoport is the Medical Director of the Paediatric Advanced Care Team (PACT); Kim Widger is a Nurse Researcher with PACT; and Dr. Jeremy Friedman is the Associate Paediatrician-in-Chief at SickKids.