Arthur Slade remembers feeling nervous about returning to Royal University Hospital several months after his five-year old daughter Tori died. He and his partner Brenda Baker had been invited back to participate in the End of Life Program in the pediatric intensive care unit (PICU). “I was thinking ‘Do I really want to go through all of that again?’” In the end, Slade says they were excited to have an opportunity to ask the questions they didn’t get to ask in the rush that took place at the end of Tori’s life.

“It was obvious the day Tori passed away, that she would die in the next hours,” he explains. “We made the decision we would let her go. You get presented with all the information there. You feel like you’re making the right decision, but over time, doubt started creeping in. For me and for Brenda too, that was the biggest question. Did we make the right choice for her? That question was answered (at the End of Life meeting) and it brought down the level of guilt.”

Arthur Slade with his partner Brenda Baker and their daughter Tori in a photo taken a few years ago.

The PICU’s End of Life Program offers parents and family members an opportunity to get answers wherever they had questions or doubts about their child’s death. It started in late 2007 when the unit had seen a high number of deaths and staff were feeling the intense strain of so many young lives being lost. “At the time, I had also experienced a death in my family,” says Registered Nurse Maureen Deacon, who was one of several PICU staff involved with starting the program. “I knew that I needed to talk to someone about my family member’s death, ask questions and hopefully get answers in order to lessen the acute pain I felt. It stood to reason that others who had lost a family member might also need such an avenue and perhaps even more so if it were a child.”

Deacon spearheaded the program with the support of other staff on the PICU as well as the PICU Medical Director, neonatologists and pediatricians on staff at Royal University Hospital.

When a child dies, the family is asked if they can be contacted again to offer them the services of the End of Life Program. Deacon and the staff then send out an invitation to the family to arrange for the meeting to take place in about six months time. The meeting involves the physicians, nursing staff and other professionals involved in the care of the child.

“We try to have a setting that’s home-like,” says Deacon. She spreads a table cloth on the meeting table, sets out a pitcher and water glasses and ensures the room they’re using is clear of any medical terminology on the white boards or walls. The meeting is held outside of the PICU so that families don’t have to return to the place their child died. Families are also offered the option to hold a candle-lighting, non-denominational chapel service.

Not all families are willing to participate in the program and Deacon understands that. But even then, on the one-year anniversary of a child’s death, the PICU sends a card of remembrance to the family. “It’s a little hard. And I always wondered what the card meant to people,” she says. “But we recently got a note back from a family thanking us for remembering them.”

PICU’s Manager of Nursing Adele Riehl sees the surveys that families are asked to complete at the end of their meeting. “Based on that feedback, we are able to make changes and improve our services,” says Riehl. “All the families who have accessed the program and submitted a response have given us great feedback which is used to continuously improve the program.” The concerns parents raise at these meetings are also brought to departmental meetings to review and implement if appropriate.

The literature Deacon has reviewed indicates that the loss for parents who have had a child in the hospital for a long time is two-fold. “They lose their child and that is incredibly tragic. But they also grieve the loss of their second ‘family,’ the staff that they’ve interacted with during their child’s illness.”
Slade agrees. “It’s such a powerful, horrible experience to have someone die. You spend all this time with the nurses and doctors that became your community. There was something almost sacred about sharing Tori’s death with all those people,” he says. “Going back to see those people again was a good thing for us,” he adds.