Trends in Palliative Care Research 2021; Issue #12

Commentary by:

D.A. Colenbrander MD, Pediatrician, Jeroen Pit Huis, Amsterdam

H. Knoester, MD, PhD, Pediatric Intensivist, Emma Children’s Hospital, Amsterdam

Feature Article:

Vallianatos, S., Huizinga, C. S. M., Schuiling-Otten, M. A., Schouten-van Meeteren, A. Y. N., Kremer, L. C. M., & Verhagen, A. A. E. (2021). Development of the Dutch Structure for Integrated Children’s Palliative Care. Children (Basel), 8(9).

View the Issue #12 Citation List in the Library

View a PDF of the Issue #12 Citation List

As we all know children’s palliative care (CPC) is a relatively young discipline. It may be that in the past the palliative care for children was similar to adult palliative care; nowadays we know that CPC for developing children, living with their families, needs a different approach. Worldwide CPC is changing and developing rapidly with CPC experts and the founding of the ICPCN.

In the Netherlands, a small European country, CPC has developed into an extending network of teams with dedicated caregivers and pediatric palliative care experts. This development is outlined in the article of Vallianatos et al. The article describes the evolution of CPC from providing just terminal care for children to the current and broad perspective of CPC being “care for all children and their families with a life limiting or life-threatening condition and also for children with chronic complex conditions”. This began in the Netherlands with the initiation of the Children’s Palliative Care Expertise (PAL) foundation in 2007 and the first children’s palliative care team (CPCT) in the Emma Children’s hospital in Amsterdam in 2012. Collaboration of CPC experts, the development of a nationwide CPC guideline, Dutch multicentre research on what was needed in CPC, training and education of professionals, collaboration with parents and adequate funding were all important factors that lead to a nationwide structure for CPC.

The 7 current CPCTs are all affiliated with a university hospital. The CPCTs are multidisciplinary teams consisting of specialised child nurses, pediatricians, psychologists and child life specialists. They collaborate with the regional CPC networks and bridge the gap between hospital and home by providing case management and advanced care planning for the child and its family. The CPC guideline and template for the individualized care plan are practical for use and easily accessible for caregivers and parents. The development of the structure is strongly supported by the Foundation for Children’s Palliative expertise, and since 2018 by the Dutch Knowledge Centre funded by the government. For CPC, developing sustainable financing by insurance companies is also under way.

All these developments show that CPC has become an established discipline in The Netherlands. This structure reduces the cost of hospital care and admission rates for children that need CPC. In the last year the CPC networks offered the same care to children who are chronically ill but whose condition is not life-threatening, a growing group of children worldwide. We think that expanding CPC to children with medical complexities will improve care for these children and thereby improve quality of life of these families and may decrease healthcare costs by decreasing hospital admissions and ER presentations.

Further improvement in CPC is promoted by the Knowledge Centre by strong collaboration, research projects, and parent involvement. Collaboration and adequate communication is always a challenge, as is empowerment of parents in taking care of their seriously ill children. A transitional care unit (TCU), in the neighborhood of a hospital, where parents can adapt to living with a seriously ill child, could lead to a more sustainable transfer from hospital to home. In the Emma Children’s Hospital in collaboration with Salvation Army and the foundation Karnebeek 4 Kids we developed a nurse-led TCU that will start in 2022. Hopefully it will lead to improvement of CPC provision.

The article by Vallianatos and colleagues in this month’s citation review shows the benefit and results of a tight collaboration in improving CPC nationwide and serves as an example for those who are willing to improve CPC in their own region or country. The structure of CPC that is built in the last decades in the Netherlands is a good foundation for further improvement of CPC and hopefully expansion of the target groups that can benefit from this care.