Proactive and person-oriented care, that is what Advance Care Planning (ACP) conversations and the Individual Care Plan (IZP) are all about. Talking together about what is important to the child and family and looking ahead to the future. By first entering into a dialogue about values and preferences of child and family, joint goals are eventually formulated and scenarios for future care and treatment can also be worked out. The IZP is the outcome of the whole, because it concretely records the results of the ACP conversations. Senior researcher Marijke Kars and pediatrician and postdoc researcher Jurrianne Fahner explain in this interview why ACP and the IZP are so valuable.

Get a view of the present and the future
During ACP conversations, completely different topics are discussed than during regular contact moments, says Marijke: “An ACP conversation is actually a conversation in which we try to gain insight into what is important for the child and family, what the underlying values are and which goals in the near future. It is a conversation in which everyone is free to tell how they experience their situation. In the consulting room you are mainly concerned with, for example, the symptoms and the medication. An ACP conversation, on the other hand, is really meant to start a process of reflection and dialogue about what's going on in their lives, what they're worried about, and what kind of parent they want to be. You can then organize the care and treatment accordingly. It is not a one-off conversation, but a process in which you look at what is important in a new situation at different times. Because the questions can have a profound character, the child and family also gain insight into their own reality. Questions such as "What am I worried about?" or "How do I stay upright?" come to the surface.”

Confrontation
Some families are not immediately eager for such a conversation, Jurrianne has noticed in practice: “For parents, looking to the future means a confrontation with feelings of loss and sadness. This confrontation brings a lot of emotion. Then the tendency to avoid such a conversation is greater. That is precisely the reason why we prefer to start the conversations early. We hope that this will make it more common to talk to each other at this level, especially when the child is going through a relatively quiet period. And that it therefore feels less threatening to have such a conversation in the last phase of life or when the child is deteriorating.”

Interlocutor
In principle, anyone can make ACP calls. Jurrianne: “It is important to agree in advance with the child and parents with whom they would like to have this conversation. This can be a discussion facilitator who is not part of the medical treatment team, but also, for example, a nurse from a Children's Comfort Team or another paediatrician. It is important that the person responsible for the treatment policy is involved in the discussion process. It makes no sense to talk very extensively about what the child and parents consider important if that information is not shared with the main practitioner.”

The beginning of an ICP
ACP conversations have not been conducted in a structured manner in the Netherlands for very long. We still have to discover how we can communicate with each other as efficiently as possible and how we ensure that everyone is on the same page. Those involved must be able to adopt the results of an ACP discussion in the form of concrete goals. Marijke believes that the IZP will help with this: “ACP conversations have been incorporated into the IZP process, because the IZP must be well attuned to what the child and parents consider important. However, there was no underlying form or guideline for this yet. In recent years, IMPACT has been developed, a tool for applying ACP in pediatric palliative care. Then it became clear that it would be very nice if the start-up and completion of an ICP starts with an ACP conversation.”

First, second and third line care
In recent years, many people from primary, secondary and tertiary care have also been trained in conducting ACP interviews based on the idea that we fill in an ICP based on these interviews, says Marijke: “In the Netherlands, most IZPs completed by the Children's Comfort Teams. There is also the most knowledge when it comes to ACP. Now we will see what it is like when other healthcare providers involved from primary, secondary and tertiary care start up and complete an ICP.” Jurrianne believes that GPs can also play a role in the ACP and IZP process: “The GP could certainly be someone who will initiate the ACP process, starting from the world of the child and family. It is often the case that the parents and their child mainly have a strong treatment relationship with the paediatrician or pediatric nurse, because they also possess the medical expertise. But the GP is ultimately the one who continues with the parents when their child is no longer there. The GP will always have a treatment relationship with the family. I think that an ICP can therefore also be a bridge to bring all those involved around the family more together.”

Monitor values and preferences
“The power of ACP lies in exploring basic values and preferences,” explains Jurrianne. “By discussing this with the child and family in advance and recording it in an ICP, we can better monitor these values and preferences later on. For example, one father indicated that he enjoyed discussing in calm waters what they as parents consider important for their daughter. If she is acutely ill, the care provider can better assist the family by saying, for example: 'Do you remember what we discussed? What do you think is important to her? I think that the time has now come to respond to that and I want to assist you in this moment.' In the moment itself, the sadness and fear would dominate, but because the values and preferences were discussed calmly in time, everyone knows what needs to be done and the family can be present in the moment with more peace of mind. At the same time, practice also shows that things sometimes go differently than you had thought or discussed, but discussing them in advance does give you peace of mind.”

Mutual recognition and insights
ACP also provides more control and autonomy for the child and family, as Jurrianne shows an example from practice: “In our Children's Comfort Team, we were involved with a child with serious congenital abnormalities. The palliative process was supposed to take place in the hospital, but the parents really wanted to take their child home. The team initially saw many obstacles here. During an ACP meeting, more insight was gained into the needs and wishes of the parents to take their child home. Parents were able to clearly indicate what they considered important and what the care for their child should contribute to. They were then able to spend a valuable period of several weeks together as a family at home.”

Connecting perspectives
An ACP conversation brings together the perspective of the child, family and healthcare professional. “It is important to realize that not everything people want or wish is actually possible,” says Marijke. “In the ACP process there is also a piece of explanation from the practitioner about when something is medically futile or what a do-not-resuscitate policy is. That may not come up in the first meeting, but it is good if care providers use their expertise to enter into a dialogue and explain what is and what is not possible. With ACP conversations we aim to build a reliable relationship between caregiver, child and parent. This also means that these kinds of topics are discussed. But it goes beyond just the medical aspect. It is also about the psychological, social, and spiritual aspects of palliative care.”

Knowing more?
On our website you will find more information about the Individual Care Plan and Advance Care Planning in pediatric palliative care. You can also watch an informative animation video about Advance Care Planning and an informative animation video about the Individual Care Plan .

Jurrianne Fahner (left) and Marijke Kars