«Don't put anything off any longer!»

Lina died of cancer at the age of six. In the main article, Claudia Weideli-Krapf, Lina's mother (pictured above), explains how the family accompanied the child to her death and how they are dealing with the loss. Here you can read the interview that author Cornelia Hotz also conducted with palliative care doctor Eva Bergsträsser.

Mrs Bergsträsser, Lina's mother, says that it was a great relief for her to be able to care for her daughter at home in the last months of her life. According to studies, many parents feel this way when their child is terminally ill. Why is that the case?

At home, those affected experience a sense of security and familiarity that no hospital can offer. However, this does not mean that other places, including the hospital, cannot make an important contribution to support, at least temporarily.

The aim of palliative care is to ensure that life remains worth living despite an incurable illness.

You run a palliative care centre at Zurich Children's Hospital. When people hear the term palliative care, many immediately think of end-of-life care or bereavement counselling.

These are certainly two essential components of palliative care. However, palliative care encompasses much more than care for the dying and bereavement - namely the organisation of life in the last weeks, months, perhaps even years of a patient's life. The aim is to ensure that life remains worth living despite an incurable illness. This component of palliative care is still often neglected in paediatrics in this country.

Do doctors feel insecure when it comes to dying children?

In order to initiate palliative care, a change of direction in treatment is required. However, this requires a clear statement: «From now on, there is no prospect of a cure.» And many doctors find this difficult.

Lina was diagnosed with a particularly aggressive brain tumour. It was clear from the outset that there was no chance of a cure.

Such a diagnosis is terrible and incomprehensible. The parents learn without preparation that their child is going to die. There is no process in which this certainty slowly develops, for example because a therapy does not have the desired effect.

What is the role of a palliative care team?

We want to help children, young people and their relatives to make the most of the time they have left and to organise it as independently as possible within the scope of their abilities.

What does that mean in concrete terms?

Anyone who enters oncology undergoes a close-meshed therapy programme. Once the moment is reached when healing is no longer the primary goal, the family regains its autonomy, which is overwhelming for many.

How do you proceed?

We hold detailed discussions with the family in which we ask questions such as: What are their wishes? What is still possible in the remaining time? Perhaps celebrating a party for which it would only be time in three months' time. I strongly advise these families: «Stop putting things off, you have to do it now!»

The grief of a mother is different from the grief of a sibling. Parents should recognise and accept this.

This takes strength and courage for most relatives, because until now the oncologists have led the way. But if, as a mother or father, you manage to act in a self-determined way in these final weeks and develop an attitude to the fact that your child will die, then it may be a little easier to carry on living after your child's death.

So the step of letting go has already taken place?

To a certain extent, yes.

How can you help the siblings?

Siblings are often pushed into the background. It is important to involve them in palliative care at an early stage and find out what their needs are. It is very important to convey to them that they are not to blame for the situation and that they have the right to continue living their own lives. The grief of a mother is different from the grief of a sibling. Parents should recognise and accept this. There may be situations in which the little brother or sister still goes out and has fun. And that's a good thing.

How should you approach a family whose child is dying?

Basically, I would say as authentic as possible. It also depends on how close the family is to you. For the parents, such a situation is a huge effort, they are usually together with their child day and night. It would be helpful to have a large network of friends who support them in everyday life: shopping, cooking, doing the laundry, inviting siblings over to play so that the parents have time to be with their sick child and care for them.

It is helpful to simply ask: «What is it like, is there anything I can do?» Of course, this also applies to the time after the child's death. It is important not to expect thanks. These people are often not in a position to do so.

The surviving dependants have a right to live.

Are there things I shouldn't talk about?

There are no-go sentences that may be well-intentioned but are completely out of place. «You're still young - you can have lots more children» would be one such sentence. This child will not be replaced by another.

«I can well imagine that» is certainly one such sentence.

That's right. You can't imagine such existential crises. Instead of saying something like that, it's better to keep quiet or say: «I can't imagine it at all, would you like to tell me what it's like for you?»

When a child dies, it leaves a void that cannot be filled. Lina's mother says that she can still feel her daughter next to her years later.

And that is perfectly understandable. But I also tell affected parents that they don't need to worry about forgetting their child or important things about their child. Many parents are very afraid of this. But if you desperately want to hold on to all your memories, you won't be able to move on properly and do justice to your partner and living siblings. The deceased child will always stand between them. But the bereaved have a right to live.