Anyone who can't get better deserves the best quality of life in that last phase. Many parties work together in the field of palliative care and a lot is going well. But there are also plenty of opportunities. Palliative Care Netherlands (PZNL) has been commissioned by the Ministry of Health, Welfare and Sport to manage cooperation in support of palliative care in close cooperation with the Knowledge Center for Palliative Care for Children.

PZLN and Knowledge Center for Palliative Care for Children have therefore drawn up the National Palliative Care Program II together with stakeholders in (child) palliative care. The program is entitled 'Fit and measure together' and is a follow-up to the NPPZ I (2014-2020). The ambition is: the right palliative care, in the right place, at the right time, with the right care providers and with the right funding.

A large network of stakeholders is involved in the realization of NPPZ II. This includes the Integral Child Care Networks and our Child and Family Expert Council. Because every sick child has the fundamental right to child-oriented care and, when necessary, to palliative care. Below is an overview of the main themes that have been drawn up within this programme.

Proactive care and support for child and family, if necessary, where necessary

Digitization of the care plan for children's palliative care
We are currently working hard on the substantive revision of the Individual Care Plan for pediatric palliative care. Also referred to as the ICP. We want to achieve that an integral, cross-domain ICP is available for every child and family in palliative care. This must always be available and up-to-date for caregivers and family. In addition, the digitization of this plan is a requirement. To achieve this, a number of steps are required, including the development of an information standard. And also the development and implementation of - currently still missing - healthcare information building blocks and a secure digital infrastructure. We want to start working on this in 2023.

Revision area of expertise Case management
In 2016, together with V&VN Pediatric Nursing, we developed the 'area of expertise case manager for pediatric palliative care' explicitly for pediatric nurses. This has also been implemented within the eight Children's Comfort Teams in the university hospitals. The case managers guide the child and family in the transition from hospital to home. They have also proved to be an important link in the initial support of families in organizing care at home.

Unfortunately, the impact of the fragmentation within our healthcare system is great. Families often need care from all legal frameworks. The complexity this entails for parents necessitates a revision of the expertise profile and expansion to care at home. The case manager functionality must be made available to all families with a child with complex care needs. So that they are supported in organizing and arranging care in all areas of life. We want to start working on this in 2022.

Epidemiology

There is currently no basis for data collection within pediatric palliative care. As a result, the target group is not well defined. This is partly due to the fact that palliative children can only be registered in paediatrics from the beginning of 2023. In practice, we see that we miss families or get a picture of them too late, as a result of which the families receive appropriate care and support only at a late stage. For example, of the families that turn to the Network Integral Child Care (NIK) for support, only a part is known to the Kinder Comfort Team. So we don't know exactly how many palliative children there are and we don't know how many families we are missing. Research is needed into numbers, characteristics and indicators of pediatric palliative care. With the implementation of separate registration for pediatric palliative care in 2023, pediatric palliative care will be able to set up such an infrastructure.

“'Adding life to days, where you can't add days to life'. That is what (child) palliative care is essentially about. And that is also what the NPPZ II should focus on. Together we must ensure that quality of life and death are central to children and families, adolescents and adults who need palliative care."

says Meggi Schuiling-Otten, director Knowledge Center for Palliative Care for Children

Social awareness about what pediatric palliative care is and anchoring

There is great unfamiliarity with the WHO definition of pediatric palliative care. And therefore also a lack of embedding of this definition in policy and funding. This creates bottlenecks in the lives of children and families and in the transition from child care to adult care. For example, according to the WHO, pediatric palliative care starts with diagnosis and not only in the last phase of life. Palliative care is therefore not the same as palliative terminal care. An image that is persistently present not only in healthcare, but also in our society. Increased awareness requires awareness campaigns aimed at different target groups: children and families, young adults, the general public, (care) professionals, policy makers and financiers. We want to achieve this through targeted media campaigns, information, training and knowledge sessions. And also by conducting a political lobby for the anchoring of the WHO definition in policy and funding.

Improving the organization of transition 18-/18+

Young people with a life-limiting or life-threatening condition usually have to deal with the transition from pediatric palliative care to palliative care for adults around the age ^of 18. This transition is often abrupt, often because there are major differences between care for children and adults. Most bottlenecks in this transition can be seen in the continuity of care, professional development, funding and organization of care for these young adults and their families. Some of the activities to improve this transition are included in NPPZ II, namely:

• Collecting, processing and sharing relevant knowledge and information   about palliative care for adolescents young adults
• Conducting research into bottlenecks in the 18-/18+ transition
• Designing a structured collaboration   between the 65 palliative care networks (NPZ) and the 7 Integral Child Care Networks (NIK), which also include the 8 Children's Comfort Teams (KCT)
• The permanent anchoring of the Doctors for the Intellectually Handicapped to ensure continuity of care for the large group of palliative children with an intellectual disability during and after the transition
• Within the development of client profiles for district nursing medical child care (Bekostiging district nursing 2027, NZa), ensure that the connection with the client profiles of adult care is guaranteed.
• Development of a guideline transition 18-/18+ palliative care .

The points for improvement in the field of 18-/18+ are joint spearheads of PZNL and the Knowledge Center for Palliative Care for Children.