Home-based palliative care for children: the case for funding

Abstract

Paediatric palliative care services have grown up in response to local needs with the result that provision is patchy and in some areas non-existent. Funding for existing services comes from a variety of sources and in the case of teams funded in 2003 from The New Opportunities Fund, there is uncertainty about future provision as funding streams come to an end. This article illustrates how home-based palliative care achieves the objectives of the NHS Plan (DH 2000a) and makes the case for the continuation of paediatric palliative care teams already established through New Opportunities Fund (NOF) funding as these provide a ready made, quality service meeting the government agenda and addressing the needs of patients in a place and at a time to suit them.

Pediatric palliative care in the community

“…Community‐based PPC (CBPPC) is a branch of PPC that bridges hospital, home, and hospice settings; as such, CBPPC programs play an integral role in the coordination and provision of complex care for children with life‐threatening conditions and their families . More than a decade ago, the Institute of Medicine (IOM) released a report entitled Improving the Palliative and End‐of‐Life Care for Children , in which they called for improvements in CBPPC through better collaboration among individual health care professionals, children's hospitals, home care services, and hospice agencies .…”

“…Unfortunately, clinicians seldom have a chance to discuss goals of care and other emotionally fraught issues when a child and family are at ease within their familiar environment; more often, these difficult conversations transpire in the hospital during times of high stress and disruption of routine . Whenever possible, the safe and familiar environment of the home is more ideally suited for allowing relationships and conversations to evolve over time based on the changing needs of the child and family . In this capacity, CBPPC affords children and families a way to make thoughtful, unrushed care decisions that best align with their values …”

“…In addition to fostering communication, relationships, and goal‐directed decision making, CBPPC providers also manage numerous pragmatic logistics to minimize stressors and allow the child and family to remain in their comfortable and familiar environment. These services may include organization of the following resources: delivery/repair of durable medical equipment, home infusions, prescriptions, and other medications and medical supplies; coordination of home‐based laboratory monitoring, physical therapy, occupational therapy, speech therapy, and other home‐based services; provision of respite services; access to patient/sibling/parent support groups; and bereavement resources . In our experience, a CBPPC program should aim to incorporate fundamental aspects of holistic home‐based care (Table ), although further research is needed to better understand and prioritize these services.…”

The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK

“…Effective palliative care services for children require strong partnerships between providers, and may require cross-boundary, collaborative commissioning between the statutory and voluntary sectors. 19 In the UK, palliative care for children has specifically been included in national policy, a service specification for paediatric palliative care exists and NICE (National Institute for Health and Care Excellence) Guidelines for end-of-life care for infants, children and young people were published in 2016. 20–24…”