Background. Providing care to children with end-stage heart failure is a challenging and emotionally difficult endeavor. Their disease trajectory is often unpredictable. These children can oscillate between being in stable condition to suddenly become acutely ill and requiring intensive care. In this field, new innovative therapeutic interventions emerge regularly, but they can also come with a significant impact on the quality of life. Pediatric-Cardiology teams and parents are regularly confronted with the need to take quick difficult decisions. 

Aim. To establish a partnership between the Pediatric Palliative Care and Pediatric Cardiology teams.

Method. All children waiting for a heart transplant were systematically referred to the Pediatric Palliative Care team. The Palliative Care team’s participation entailed the following: providing additional emotional and psychosocial support to families throughout the journey, addressing uncomfortable symptoms, focusing on maintaining a sense of « normalcy » in the child’s life (e.g. play, school activities, interactions with families), providing a continuity of care between settings. For some children less fortunate, the involvement of the team also involves end-of-life care delivery and grief follow-up for several months.

Results. Within a 2-year, 24 children benefited from this collaboration. Their age ranged from two to 14 years (58% were girls). The main encountered issues were: Family coping difficulties (83.3%), Mood/Anxiety/Sleeping problems (79.2%), and Pain (33.3%). The most frequent interventions provided by the Palliative Care team were: Routine support and counseling (87%), Education about symptom management (65.2%), and Consultation with Allied healthcare providers (39.1%). Six children were provided with end-of-life care in the process of awaiting a heart or following post-transplant complications. Families reported being satisfied with the added care. This project provides insight into the need for an integration of palliative care services early in the disease trajectory, whether the child is a candidate for disease-modifying treatments or not.