In our last newsletter, we asked you what questions or wishes you have about pediatric palliative care and presented these to Santa. Do you read along?  

Is it important to pay attention to advocacy?

Yes! Children’s palliative care can be an ‘alien’ concept in some countries. The death of a child can be seen as ‘against nature’. So, it’s really important to make the case for the value that it can bring to the quality of a child’s life and how providing children’s palliative care can improve outcomes, not only for the ill child, but also for their parents, siblings and wider family. It helps to harness the passion of professionals and to work with young people and families themselves to advocate for the development of child palliative care in a powerful way.

How we can include everybody around the child in the care? 

To maintain relationships, reinforce motor skills and avoid the social isolation of children with palliative care needs. The participation in cultural events and opportunities for play that offer recreational tools and settings appropriate to the child’s age, condition and expectations should be organised in collaboration with parents, teachers and group leaders. The support of a psychologist from the palliative care team to interrelate with classmates/peers and educators can help to overcome diversity barriers and foster integration.

In the case of older children or young adults, specially devised educational/awareness programs can introduce students to the subject of palliative care, life-threatening and life-limiting illness and help them to understand and recognize the needs of their fellow students and companions.

To permit more independent social activities for young adults with palliative care needs, their closest friends group could be encouraged to participate in caregiver training at the local children’s hospice or palliative care reference centre.

"I wish that pediatric palliative care services become available for all the children and families who need it, worldwide."

Susan, mother of Sam (4)

What perinatal care means to the whole family? 

Perinatal Palliative Care to the whole family means, an extra-layer of care from suspicion or confirmation of a palliative condition in an unborn or a child in the first week of life. This extra-layer of care is provided to the child and the family and tailored to their specific needs: It can include counseling in regards of the rest of the pregnancy, in developing a birth care plan, and care after birth. Further, it can include psycho-social-spiritual support for the parents, siblings and extended family at the place of choice of the family. Care includes bereavement support, from as early as suspicion/confirmation of diagnosis beyond the death of the child. Perinatal Palliative Care teams collaborate with and support other healthcare professionals involved.

"I wish that parents & siblings of children with life-limiting or life-threatening conditions may feel supported and not alone"

Daniel, peadiatric palliative care nurse

Santa, how can I, a general pediatrician, advocate for children’s palliative care in my Department? 

One important way is to gather data and evidence about the needs of children and young people  you care for. Evidence is power! Many general practitioners are not confident about introducing the topic to families and unsure that they will be able to answer questions arising.. It is helpful to think about the culture of the team who  you work with and their acceptance of palliative care as an approach. You could think about introducing training on the ethos and principles of children’s palliative care, concepts like parallel planning and enhanced communication skills. Once you have a number of doctors who are passionate about children’s palliative care, you will have advocacy champions.

"I wish that all professionals that care for children with life-limiting or life-threatening conditions have at least basic PPC education."

Ryan, pediatrician  

Santa, can you tell me what children with life-limiting or life-threatening conditions wish for their Holidays?

“For many children with life-limiting conditions, their wish will simply be to spend time at home with their family and not to be in hospital. For some children, it may be their last Christmas, so it’s really important to make sure that the holidays are a special time, so that they and their families can make special and treasured memories. Like all children, many will want to see you coming down their chimney and bringing lots of presents!”

"I wish that children with life-limiting or life-threatening conditions can be cared for wherever their wish & preference."

Jill, pediatric oncologist

Santa, I am a high-school teacher – how can I support a young man who is a student of mine,  with palliative care needs?

How nice of you to be willing tot support your young student who has a serious illness. In the limited research on the roles of teachers and schools in addressing serious illness, dying, loss and bereavement we found that there is lacking (structural) guidelines in how to cope with this. However, we found that teachers and schools can indeed play a significant role in the support and informal care for their students who have a serious illness or who experience this in one of their friends, siblings, (grand)parents… New public health approaches, including compassionate cities and compassionate school/universities are arising. They try to, among other things, develop trainings to assist school communities to develop knowledge and confidence in engaging and supporting children with or confronted with serious illness. Maybe such initiatives exist in your neighbourhood or school?