Home Sweet Home’ – Exploring the Support Systems in Place for Children and Young People with Complex Palliative/End of Life Care Needs within the Community.
Within NHS Lothian progress has been made within Community Services to provide a nursing support service for children and families with palliative/end of life care needs out of hours. From this the project was developed to look at the overview of existing services and how these can be improved. International nursing partnerships has become an increasingly popular method of exchanging nursing knowledge and supporting nurses in improving direct patient care and workforce development. An application was made to Florence Nightingale Travel Fund to visit the USA to look at two contrasting areas in paediatric palliative care – Boston Children’s Hospital and Western North Carolina Mission Hospital, Asheville.
Prior to the trip a period of research was carried out within NHS Lothian to look at current services in place for children and young people (C&YP) with palliative and end of life care needs within the community. A short life working group was developed with key professionals in paediatric community, acute and palliative care along with a survey monkey to the wider community including GP’s, District Nurses and children’s hospice. The key points identified from this was supported by the literature in relation to the barriers found by professionals and the increasing preference for C&YP to choose to have their preferred place of care at home for palliative and end of life care needs.
From the 2 areas visited in the USA my findings was one of over whelming passion for the development of paediatric palliative care services for C&YP giving them choices and quality of life they need and deserve. The key lessons learned was that both areas visited gave equal importance to spiritual, psycho-social and emotional needs with all teams having the same structure with significant role played by Social Work and Child Life Specialist (play therapist) and the nurse practitioner leading and completing Advanced Care Directives. One of the areas have developed a ‘transdisciplinary’ team which come together when there is a child requiring support for palliative/end of life care needs. Most of the teams removed the word palliative from their title evoking approachability. Similar gaps in services were found along with issues in resources for service improvement around funding.
Four recommendations were made from the review – to develop a Paediatric Palliative Care Team within NHS Lothian including the development of the Palliative Nurse Specialists in the role of leading and completing care directives. To further develop holistic care – provision of play to children receiving palliative and end of life care at home along with the development of memory boxes. To improve education for acute and community staff in the care for C&YP with palliative care needs. To continue with the links made with the teams in the USA.
Paediatric palliative care is not about dying, but rather about the comfort and enhanced quality of life for C&YP. Palliative care should be available to all C&YP regardless of illness, diagnosis or geographically location with a multidisciplinary approach to care to ensure continuity of care for C&YP and their family. The trip proved to be an invaluable learning experience with the impact of the findings already being implemented into practice but further developments are required to ensure high quality children’s palliative care services with appropriately trained and educated professionals.