Proactive care planning is helpful in the care of children with a life-shortening or life-threatening illness and their families.
As a parent or caregiver, you want your child to receive the best possible care. It's important that healthcare providers understand what's important to the child and family. Discussing what's important now and in the future is called proactive care planning. During such a conversation, children, parents, and healthcare professionals discuss values, goals, and preferences for care and treatment. This helps bring all wishes together and thus coordinate care effectively. In this article, Agnes Verbunt, mother of 15-year-old Sem, and pediatric cardiologist Gabrielle van Iperen share their experiences with discussions about proactive care planning in pediatric cardiology.
Sem and his family
Agnes and Daan are the proud parents of 15-year-old Sem. They live in Elst, Utrecht. Sem has a serious heart defect and acquired brain injury. When Sem was three days old, an attentive maternity nurse sounded the alarm: "He suddenly became very ill. The midwife told us to go straight to the hospital. Six doctors and nurses were immediately there to care for him. It turned out Sem had several defects. Our world was suddenly turned upside down."
Sem is developing a single ventricle. "He's doing well now," says Agnes. "He's learned to live with his lack of energy, and so have we. When we take the dog for an hour-long walk in the woods, Sem goes along in the stroller. Sometimes the situation is dire, but we always look for solutions and make the best of it. That's just the way we are."
Emotional
A few years ago, Agnes and Daan had their first conversation about proactive care planning with their pediatric cardiologist. Together, they discussed what was truly important for Sem and his family, now and in the future. Questions about what to do if Sem really wasn't doing well were also raised. This conversation was invaluable to them: "When you're faced with a difficult decision, you're emotional and can't think or reason rationally. It was helpful to discuss this with the doctor. His doctor now knows what we want and consider important. It gives me peace of mind because I can let go."
It was valuable for Agnes to be able to discuss so much with the pediatric cardiologist, even when it became emotional: “As a mother, I naturally don't want to be faced with a difficult decision. You want to do everything you can, but from Sem's perspective, that's not always what's best for him. What's best for my child can conflict with what I want. That's quite a dilemma for me. It's good that I could discuss this with the pediatric cardiologist. Together, you discuss everything that's important to you as parents. You have to create that space for each other. It's not just about medical topics, but especially about our lives with Sem's condition and what it means for him and us. During the consultation with our cardiologist, we were able to talk about everything, even about school.”
Talk to each other
Agnes believes all parents should have this conversation with their doctor: “This should simply be a standard part of the process or treatment plan. I really believe that. This isn't a decision you can only make at the crucial moment. You should always have this conversation together. You don't know what situation you'll find yourself in, and this conversation will help you reflect on what's important to you. That helps you decide what you do and don't want. So, write down what's important to you and don't wait too long. When the time comes, it can be put into practice. Just like everyone else, we don't know how old Sem will be, so it's good to be somewhat prepared.”
Pediatric cardiologist on proactive care planning
Gabrielle van Iperen is a pediatric cardiologist and has worked at the Wilhelmina Children's Hospital in Utrecht for over 20 years. As a member of the Children's Comfort Team and one of the stakeholders in the 'Guidelines for Pediatric Cardiology & Pediatric Palliative Care,' Gabrielle first encountered proactive care planning: "It's crucial to be able to have a proactive care planning meeting. This forms a solid foundation for supporting the child and family. You don't really need to have such a meeting annually, but for our patients with chronic heart conditions, it's good to make time for it occasionally when needed."
What is the added value of a proactive care planning conversation for you?
Such a conversation can be incredibly valuable. As a parent, you can calmly reflect on what you want for your child and what's important for their quality of life, without being in an acute situation at that moment. I appreciate how openly families talk about their child and their struggles as parents during our conversations. Almost every conversation is moving. The conversation is incredibly valuable to me as a caregiver because it reveals a lot about who their child is. It also prevents me from assuming their thoughts. Through these conversations, I understand the child and family better, and they understand me better. Often, unexpected needs arise, for example, about fears and desires, and we can offer targeted support for those.
What would help to implement proactive care planning more effectively in pediatric cardiology?
"Until now, I've been conducting the interviews myself, often together with a pediatric nurse from the Children's Comfort Team. Not everyone is trained to conduct these interviews yet. I can't conduct all the interviews with our team's patients myself. That's not necessary. We need to discuss this together in the department. For example, do we want everyone to conduct the interviews? Or should a few colleagues who are trained for this do it, because they have a better feel for it? And how do we incorporate proactive care planning as a tool within our outpatient clinic? It really should be a 'simply' implementation. It's just as important as other tests performed in the outpatient clinic, such as an ultrasound or a cardiac catheterization."
Research project 'Co-IMPACT'
To facilitate proactive care planning conversations in practice, a toolkit was developed in 2020 that offers various resources for children, parents, and caregivers to initiate the conversation: IMPACT . To ensure the IMPACT toolkit can be used by as many children and families as possible, a four-year follow-up study, " Co-IMPACT, " began in September 2023. Co-IMPACT contributes to the practical application of proactive care planning for every (palliative) child, regardless of their diagnosis, stage of illness, or socio-cultural background. The toolkit will be improved in collaboration with children, parents, caregivers, and other relevant experts. In the fall of 2024, many caregivers will be trained to use the materials. After that, the use of IMPACT in practice will be investigated in collaboration with users. In addition, work is underway to optimize transmural collaboration and data exchange on proactive care planning conversations between caregivers involved with children and families. Want to know more? Visit kinderpalliatief.nl/impact
This article was written in collaboration with the Congenital Heart Disease Patient Association . Co-IMPACT is a research project of UMC Utrecht, Radboud University Medical Center, and UMC Groningen, in collaboration with the Centre for Pediatric Palliative Care and the Child and Hospital Foundation. Co-IMPACT is funded by the ZonMw Palliative Care II program.