Children's Comfort Teams: Stronger together for children's palliative care

2025 was a year of major strides for the Children's Comfort Teams (KCTs) . Not only in family care, but also in how the teams are organized nationally. "The momentum is truly there," says Carine van Capelle, pediatrician at Erasmus MC-Sophia. "You can feel it in the meetings: everyone is moving in the same direction." Willemien de Weerd, pediatrician at the University Medical Center Groningen (UMCG), adds: "Structuring the collaboration was a key goal. It increases our effectiveness, allowing us to speak with one voice and be a stronger force at the table, both within and outside the hospital."

Behind this drive for professionalization lies a deep conviction shared by the two directors: good care doesn't stop at the end of treatment. "It's about quality of life and quality of dying," says Willemien. Carine adds: "That's why our goal is for all children in need of palliative care and their families to feel seen, heard, and well-supported by a fully-fledged team, so they can move forward in the best possible way after a difficult period filled with grief."

The core of the KCTs: close to families and stronger together

The KCTs have three core tasks that will be intensively pursued in 2025. First, direct support for families. "We are experts in guiding parents through a complex process leading to the decline and possible death of their child. We focus on bringing together the parents' wishes, based on who their child is and what they value as a family," explains Willemien. "We offer a safe point of contact and consider what is important to this family," adds Carine. The support usually begins with a home visit by a nurse practitioner or consultant. This is often someone outside the regular treatment team, allowing for an open discussion. The teams also advise fellow healthcare providers, such as pediatricians who are less involved in palliative care and general practitioners who rarely see children in this phase. "This can be a daunting experience for them," says Willemien. "We are an accessible backup." This role can extend beyond mere advice: the KCTs also hold up a mirror to colleagues and ask the difficult questions: We're capable of ever more, children are living longer, but what care is still effective when the end is near? The teams also support home care professionals, from technical questions to discussions about the impact of death on a team.

The third task is to work across the board on policy and knowledge. "We want to be a strong voice in the healthcare landscape," says Carine. "That's why we've better organized ourselves this year, formed a board, and collectively contributed substantively to national themes, such as the transition from 18-year-olds to 18-year-olds , perinatal care , and case management . We meet four times a year and pool our knowledge and expertise, so each team doesn't have to reinvent the wheel."

Nurses are the heart, together with a team that moves along

The nurses are the heart of every Kinder Comfort Team.

'They are the central point of the multidisciplinary team, the spider in the web and bring with them a wealth of experience,' says Carine.

Some have a background in intensive care or expertise in home ventilation or another subspecialty within pediatrics. Others are familiar with the social landscape through their experience in home care. Together, they form a strong team. Besides their knowledge and specializations, they all have one thing in common: they always want to go the extra mile for parents. Even outside of official services, they say: call me, I know this family well. Willemien summarizes it succinctly: "They all realize that you can only get it right once. That's why they dedicate themselves wholeheartedly, always flexible enough to adapt to a family's needs." These nurses are supported by a flexible team of professionals, including psychologists, spiritual caregivers, home care professionals, and other experts. "Our multidisciplinary, holistic approach is the strength of the Kinder Comfort Teams," says Willemien. "We can scale up when the need is high and scale down when things get quieter. This way, we always offer customized services: from simple advice to full case management."

Awareness, education and demonstrating our added value

Awareness is crucial for providing timely support to families. "It's best if we can connect immediately with a palliative care diagnosis, because that increases our effectiveness in the final stages. Then colleagues need to know what we do," says Carine. That's why the teams are investing in education and visibility: through Grand Rounds (educational sessions for healthcare professionals), a video on the website, and regional presentations. "We'd like to further promote education about pediatric palliative care within the various programs," adds Willemien.

They are also working hard to demonstrate the added value of this care. "This is desperately needed, because the work of the KCTs revolves around the quality of life and death, not about production. The conversation is generally less valued than the actual procedure," says Willemien. Managers often see it as the "soft side," while this support has a huge impact on families. Therefore, the teams are working to substantiate their added value, for example, by demonstrating that an active KCT leads to fewer ER visits and hospitalizations in the last month before death.

Outlook and continued mission

In 2026, the Children's Comfort Teams will further strengthen their organization and ensure full integration into university hospitals. A seat at the right decision-making and political tables is crucial, so these teams become a natural part of pediatric palliative care. This structure is necessary to achieve its core value: providing good care for children with life-shortening or life-threatening illnesses. "Because even when medical care is no longer possible, you can still do a lot of good," says Willemien. It's a powerful message in a field where the term "treatment exhausted" is still often used. Carine adds:

"Good care doesn't stop at the intersection where medicine meets psychology. Families need to feel seen, heard, and well-supported. We remain committed to this."