'Incurable. Not treated out.' Sarike de Zoeten saw the PZNL public campaign with six different portraits of people in the palliative phase. The people portrayed for this campaign were different in background, age and disease. But Sarike was missing someone. Someone like her son Bram. He was born palliative. This means that he can die prematurely from his condition and will require intensive care throughout his life, aimed at quality of life. There is too little attention for him and his loved ones, not even from palliative care itself.

Born palliative

'That's crazy. Many children with very complex care needs are born palliative. Yet there is less and less care and guidance for them. And especially not when they get older. They don't get better, there are no treatments for their conditions and all care and medication is aimed at comfort. Some of them do not or hardly develop, because they have severe epilepsy, for example. Others need intensive care and attention in a different way.'

Do not forget

Sarike's son Bram is almost 25 years old. When he was 6 years old, it was said that the family had better say goodbye to him. He wouldn't grow old. “My husband and I mostly took care of him at home. And that is not uncommon: an increasing number of children with a ZEVMB or other complex care needs live at home. In an institution it is difficult to realize sufficient occupation of these groups and to let them really experience life. It is also often not possible to provide the daily medical care that is needed. Help and care at home for Bram is hard to find, and healthcare workers in the hospital are shocked when they see him.' That is why Sarike made its own campaign poster 'Incurable. Not treated out.' with a photo of Bram, and posted it on LinkedIn. 'Because there is no treatment for him either. That was my goal with the poster. An entire family is not seen.'

Good care

Sarike's poster caught the eye and was shared again. Other mothers also shared the photos of their children. The message was the same: don't forget the children and (young) adults who are severely disabled or incurably ill, where the combination of their conditions is life-shortening! 'All people deserve good care and a good end of life. Especially when you know that their life is a fight for some health, enough attention and always a battle with the systems.'

NIK

Some of these people are supported by Network Integral Child Care (NIK) of the Knowledge Center for Palliative Care for Children, but that is not self-evident. Moreover, the NIK is there for children, and more and more people who are born palliative are reaching adulthood. For them there is insufficient knowledge and support when it comes to palliative and palliative terminal care. 'When these children are young, there is already more to offer than 24 years ago when Bram was born. But when these kids 'have the guts' to grow old, there really isn't anyone looking out for them and they disappear from sight. And not only them, but also their parents, brothers and/or sisters. Surely that shouldn't be possible?'

Quality of dying

Palliative care is about quality of life, but also about quality of dying. 'Parents actually spend their child's entire life trying to keep pain and misery away. With pain relief, aids and constant care. The moment you have to let someone go, that should be given just as much attention. Someone with a complex care demand also deserves a nice death. And that is not there now. No euthanasia, often no appropriate palliative sedation, no psychological counseling, not even for the family. There is too little attention and knowledge about it.' (It is now known that a scheme is being prepared for active termination of life for children aged 1 to 12 who suffer unbearably, which offers an opening to include these children as well.)

Attention

Hopefully the posters, and the attention paid to them, will raise awareness of what this group needs, also in palliative care. 'By literally portraying our children, we also hope that we will be seen permanently. Our children (even though some are adults in age, they remain children in development), and their families. Because don't forget that families often provide quality of life. Their life revolves around the child. Social, emotional, psychological and physical. Because caring for a child with a complex care demand is tough in all areas. There should also be more attention for that.'

Are you in?

Help raise awareness for this group! Follow and share the posters in which parents draw attention to their children who need or have had lifelong palliative care.

^{Header photo credit: Rob Voss}