What is palliative care?
Palliative care for children is care that is aimed at improving the quality of life of the child and the family in case of a life-threatening illness. The goal of palliative care is to make the final stage of life as comfortable and as good as possible. Together with the child and the family, we look at how we optimally maintain the quality of life of the child and the family until the child dies. Palliative care does not start three days before the child dies, it starts much earlier.
Why is the International Palliative Care Day important?
It is about awareness of the importance of palliative care in general and palliative care for children. Ten years ago, nobody was talking about palliative care for children. Fortunately, they are now! Palliative care for children is a specialism. A doctor can't just pick this up as an extra task. Especially not if you want to do it really well. That is why this day and attention to this is important.
How is palliative care organized at the Princess Máxima Center?
We are setting up a palliative care team in our center. We call it the ‘comfort team’. At the moment there are three doctors specialized in palliative care. The comfort team will be part of the existing supportive care team which is responsible for good symptom management starting from the diagnosis for each child. The supportive care team knows every patient. That is really special. Not many children's hospitals have a separate supportive care team. If necessary, a patient will move from the supportive care team to the comfort team with palliative care. We are setting up this palliative team together with the Wilhelmina Children's Hospital. In this team, different care disciplines come together, such as doctors, nurses, psychologists, pedagogues, social workers, spiritual counsellors.
What will the comfort team do?
The team focuses on all the aspects of palliative care for children, not just the medical aspects but also psychosocial and spiritual. How can we optimally maintain the quality of life in all areas until the child dies? How do we deal with this care and what do we need for this? What support does the family need? And also, how and when do we communicate with parents (and child) about a possible bad outcome? The team will, among other things, give training to doctors and nurses to clarify what palliative care means and how you can best handle difficult conversations about a potentially bad outcome. The short-term goal is that care at home is well organized when the child goes home. So, we think about what can go wrong at home and anticipate that. For example, by ensuring that there are special pumps for pain relief at home and that the home nurse and the GP (general practitioner) are informed and fully instructed.
How does the future look?
In the longer term, for children with a bad prognosis, we want to achieve, among other things, that care providers enter into dialogue with the parents (and the child) early in the illness process, to discuss what they find important when it's unexpectedly not going well with their child. We notice that most parents appreciate this. Parents often don't know what is possible. We will come back to this again later if necessary. We notice that there are still many misunderstandings among care providers about conducting such conversations. They often think that these conversations take away all of a patient's hope. But that's not true, it often has a positive effect. We've talked about it; the parents feel heard and can stop thinking about it for a little while. We know from experience that the conversation often gives parents peace.
We also want to do more consultations in the department, give education and do research. We want to raise awareness for palliative care for children among care providers. Research has shown that care providers want support in what to do when a child goes home and how you conduct bad news conversations and help with difficult pain management. We will focus on this in the upcoming period. There is still a lot of work to be done and a lot to improve on quality. But for such an important purpose, we are prepared to do our best.
Erna Michiels is a pediatric oncologist and works four days a week at the Princess Máxima Center. She is engaged in palliative care two days a week. On November 6, Erna Michiels speaks at the symposium “The Doctor and Death”. During this symposium, under the title of “Do they have fries in heaven?” she will discuss speaking of death with children in more detail. Should you talk to children about death, and if so: what should you pay attention to? What do children actually understand about death? But also, how do you deal with practical questions such as “can you skip in heaven and do they have fries there too?”.
The symposium ‘The Doctor and Death’, ‘More grip on the practice of dying’ [‘De dokter en de Dood’, ‘Meer grip op de praktijk van het sterven’]; takes place on Tuesday, November 6 from 15.00 to 20.45 at the Compagnie Theater in Amsterdam.
More information on the symposium via this link: https://www.medischcontactlive.nl/de-dokter-en-de-dood-2018
More information about palliative care can be found on the website of Agora: https://www.agora.nl/Palliatieve-zorg