Continuing our series of posts, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families.
Today we hear from S.M. (Anne-Marie) van Walraven, PhD, Project Leader Pediatric Comfort Teams, Sophia Children’s Hospital Rotterdam and Willem Alexander Children’s Hospital Leiden, and M.A. (Meggi) Schuiling-Otten, Director of Stichting PAL Kinderpalliatieve Expertise, and a member of the EAPC Paediatric Taskforce.
Paediatric palliative care (PPC) in the Netherlands has gained momentum and, as such, a number of projects are both ongoing and being prepared. Although hospitals are required to have a palliative care team in place, the establishment of the Emma Thuis Team in Amsterdam, the first team to deliver paediatric palliative care at home, has shown that palliative care during childhood demands a different approach.
Currently, Paediatric Comfort Teams (PCTs) are being developed in two Dutch academic paediatric units located in different cities (Leiden and Rotterdam). In April 2015, the project started with the establishment of project groups in both locations, to gather all expertise that could add to optimal PPC. As a project leader appointed by PAL, the Dutch expert organisation for PPC, I (Anne-Marie) supported the physicians and nurses involved in the core groups, aiming for a shared vision in both paediatric units.
External training to increase awareness of PPC and expertise was funded by the project, and participants represented medical, nursing and psychosocial groups. After an initial period of brainstorming sessions, revision and development of procedures and protocols, we started the regular multi-disciplinary meetings, twice per month at each location. Rather than taking over the treatment, the PCTs act as a consultative team: they can be asked for advice on symptom management, or for help in recording an individual care plan, based on the Guideline for PPC, published by the Dutch Association of Paediatricians.
From the beginning, it became clear that for mutually agreed advance care planning, the input of parents and/or their child was necessary. It can be challenging for parents to confront future scenarios, expectations and fears, but they are often caring for their child around the clock and it’s important to discuss with them what they (and their child) wish for, and what gives them the strength to do this.
Discussing these issues will help parents and healthcare professionals to record personal views and wishes in an individual care plan. It has helped us to review the process of transition of (terminally) ill children to either home or hospice and involve specialised home care nursing teams and general practitioners much earlier. Their participation in multidisciplinary meetings is an added value for all parties.
This is the story of Leiden and Rotterdam so far; there’s still a lot of work to do, but new Paediatric Comfort Teams and networks to optimise care at home for children and their families are on the way. To be continued . . .
- EAPC Paediatric Taskforce.
- Stichting PAL (The website is mainly in Dutch with some information available in English).
Follow the EAPC Blog for more posts in this series. Next week we hear from Leah Booth who is a member of Together for Short Lives’ Young Avengers Group, a national network for young people with life-limiting conditions.