Support of the General Practitioner in Pediatric Palliative Care by Pediatric Palliative Care Teams

Background: The multidisciplinary Pediatric Palliative Care team (PPCT) of the Amsterdam University Medical Centers annually supports about 100 families with a seriously ill child, of which about 30 children die. This palliative care is provided transmurally and most children die at home.

In The Netherlands every family has a General Practitioner (GP). On average, GP’s are confronted with a family with a dying child only once or twice during their career. Most children in PPC die after health care in a tertiary hospital during weeks, months or years, in which the GP is hardly involved. Most families want to receive support from their GP, especially after the death of their child. For GP’s this is often difficult as they are not involved in the tertiary healthcare, and they miss specialized knowledge and experience with PPC. Ideally, PPCT’s and GP’s combine their expertise to support families. Joint home visits by a GP and a team member of a PPCT, for example, can be of great added value and are still rarely done in practice.

Literature shows that it´s important for the GP´s to collaborate with the pediatrician, but guidelines and advices are missing and needs and wishes of GP’s have never been studied.

Objective: To evaluate needs and wishes of GP’s to be able to collaborate with the PPCT’s in supporting families with a dying child.

Methods: Semi structured interviews between December 2020 and February 2021, with GP’s that were involved in PPC in the Amsterdam region between January 2019 and December 2020 .

Results: Are expected in March 2021

Conclusion: We are convinced that GP’s should be actively involved in PPC in an earlier phase. We expect to be able to give recommendations on how to involve them from these interviews.