Development of the Dutch Structure for Integrated Children’s Palliative Care

Abstract

Children’s palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for Children’s Palliative Expertise (PAL) was established as a nationwide initiative committed to improving palliative care for children countrywide. This led to the development of the first hospital-based CPC team in 2012, which expanded to a total of seven teams adjacent to children’s university hospitals. Regional networks for CPC were developed in parallel to these teams from 2014 onwards. The networks are a collaboration of professionals from different disciplines and organisations, from hospital to homecare, and have covered the aspects of CPC nationally from 2019 onwards. They are connected through the Dutch Knowledge Centre for CPC. This centre was established in 2018 by the PAL Foundation in collaboration with the Dutch Association for Pediatrics. In 2013, the first evidence-based guideline, ‘palliative care for children’, provided access to knowledge for parents and healthcare providers, and in 2017, a format for an individual palliative care plan was established. Within the Knowledge Centre for CPC, a physician’s support centre for dilemma’s regarding the end of life of children was set up. The efforts to have children’s palliative care embedded in the regular Dutch health care insurance are ongoing.

Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol

“… 4 Multidisciplinary CPC teams form a bridge between hospital and home, and the teams provide support and guidance to families and HCPs. 4 13 …”

“…In the Netherlands, PPC is uniquely structured with the use of transmural children’s palliative care (CPC) teams and CPC networks. CPC networks provide consultation for families and HCPs across different healthcare domains 4. Multidisciplinary CPC teams form a bridge between hospital and home, and the teams provide support and guidance to families and HCPs 4 13…”

“…3 Most of the children eligible for PPC receive complex high-tech care, which can last for months or years. 4 5 This care is often provided by a multitude of different HCPs in different lines of care and organisations, which can lead to fragmentation of care and lack of continuity of care. 5 6 Without established anticipatory care, for example, an individual care plan (ICP), PPC must be provided more often, with less expertise, in emergency situations, outside office hours and by non-regular practitioners, all with consequences for the continuity of care.…”

“…According to The Institute for Patient-Centred and Family-Centred Care, patient-centred and family-centred care is grounded in mutually beneficial partnerships among patients, families and healthcare professionals (HCPs) in the planning, delivery and evaluation of care 3. Most of the children eligible for PPC receive complex high-tech care, which can last for months or years 4 5. This care is often provided by a multitude of different HCPs in different lines of care and organisations, which can lead to fragmentation of care and lack of continuity of care 5 6.…”

Palliative Care for Childhood Cancer

“…At the same time, much effort was put in to developing a formal education in pediatric palliative care for nurses, doctors and other health care professionals working with children in need of palliative care. The article by Vallianatos et al [ 1 ] nicely demonstrates what a country can do if all stakeholders join hands to improve the quality of pediatric palliative care.…”