The Children’s Hospital of Eastern Ontario (CHEO) in Ottawa has a comprehensive Outreach Palliative Care program that encompasses supportive, holistic and family centered services for children who have a progressive, life limiting illness and their families. These services are available whether children are in hospital, at home, or at Roger’s House, the on-site palliative care hospice.
The Palliative Care interdisciplinary team includes physicians, nurses, a pharmacist, social worker, child life specialist and coordinator of volunteers. These highly skilled professionals provide pain and symptom management, arrangement for respite care and transition to home services, end-of-life care, as well as grief and bereavement support. Services are available around the clock with a physician group and nursing support on call 24-hours a day as needed regardless of setting.
The care provided by the team is that of accompaniment along the illness trajectory. Some children with life-threatening conditions may require palliative care for their entire lives as they pass from one phase of illness to another. In contrast to adult palliative care, most children who receive palliative care do not have cancer. Transitions and loss experiences are frequently encountered as children move from one developmental stage to another, reaching milestones along the way. Care is often provided in parallel with active medical treatment.
“It’s about making each day count. In pediatric palliative care, our focus is on living and making the best of the time these children have,” says Lynn Grandmaison Dumond the Advanced Practice Nurse for the CHEO Palliative Care Program. “Death is not always imminent for the children in our program. We may follow a child for several years. What we provide is an evolution of services that meet our patients and families’ needs as they transition through different stages of illness and childhood.”
Marion Rattray, Manager of CHEO’s Palliative Care Program and Roger’s House, explains that the program, which began in 1999, is constantly evolving. The team has grown since then and Roger’s House opened in May 2006, which ultimately completed the full spectrum of palliative care services offered. The hospice and team host medical, nursing and allied health students and residents who rotate regularly during their clinical placements. This mentorship is helping to sensitize new physicians and other health-care professionals to the importance of pediatric palliative care.
There is significant work to be done in sensitizing the professional and lay community to the benefits of comprehensive palliative care in pediatrics. For instance, among children and youth aged 1 to 19 years in Ontario, approximately 50 per cent of deaths are attributed to progressive life-limiting conditions due to congenital abnormalities, neurological, genetic and neuromuscular disorders.
On an annual basis, there are approximately 1,350 deaths from all causes among children/youth ages 0 to 19 (including infant deaths) in Ontario. Approximately 180 of these deaths occur in Eastern Ontario. While many of these children and their families receive palliative care services, there are still many others who could benefit.
Physicians are now beginning to refer their patients and families sooner as a child’s illness progresses, which ultimately benefits everyone involved. “When the Palliative Care Outreach Team is consulted early, we’re able to create a real bond of trust with the family and nurture that relationship over time. Being brought in, at a time of crisis and desperation, limits our ability to provide the kind of comforting service we are known for,” says Marion Rattray.
The program’s proactive, holistic model and the team’s approach is quickly becoming the gold standard where palliative care is concerned. CHEO is not only gaining recognition locally and nationally, but is also receiving worldwide recognition for its palliative care program. Organizations from as far as France have approached the program and team for insight into developing their own programs.
Making each day count for the children, youth and families is what’s important