An Outpatient Pediatric Palliative Care Clinic Model to Build Local Capacity: a 4-Year Experience and Outreach Expansion

Abstract

Background: Pediatric palliative care encompasses a broad range of services to children and their families living with progressive, life threatening disease. In our setting, organizations partner to provide care to these patients through disease treatment and inpatient palliative care, including routine and emergency respite, acute symptom management, end of life care, and bereavement services. However, there are limitations to these care delivery models. In late 2005, a joint project established an outpatient clinic based at the hospital and staffed by the hospice team. Objectives: To describe: * A 4-year experience providing outpatient palliative care linked to a tertiary hospital and a hospice. * How this model will influence an expanded program including regional outreach services. * The impact of the addition of counseling to create a full interdisciplinary team in the outpatient setting. * The impact and benefit of continuity of care provided by the addition of an outpatient program. Design: Program evaluation based on records and family satisfaction survey. Results: Semi-monthly to weekly clinics are held at the hospital, staffed by an inter-disciplinary team consisting of a Pediatric Palliative Care Clinical Nurse Specialist, Counsellor and a Physician. A range of diagnoses have been seen including cancer, metabolic and genetic conditions, and neurodegenerative diseases. Some clinics are conducted jointly with sub-specialty teams on a family-centered basis. A Family Satisfaction Survey was conducted and results include evidence of a high degree of satisfaction with this model. This program has been incorporated into the Hospice Intake and Referral process and has been helpful in assessing appropriateness for a pediatric palliative care program. Conclusion: An outpatient clinic provides a vital link for family and caregivers to the continuum of palliative services being offered between a tertiary care children's hospital and a hospice. The outpatient setting provides an alternative way for children and families to access support from pediatric palliative care health professionals without inpatient admissions. This experience will directly influence the establishment of regional outreach programs and clinics.