«We can do a lot to ensure that a child can die with dignity»

Mrs Bergsträsser, Mrs Cignacco, the term palliative care (Latin palliare, «to cover with a cloak»; English care, «care, support») immediately makes many people think of end-of-life or bereavement care.

Eva Bergsträsser: 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 and perhaps even years of a patient's life. The aim is to ensure that life remains worth living despite an incurable illness.

Eva Cignacco: From an international perspective, it can be said that the involvement of specialised palliative care teams for families makes it easier for these children to live despite their serious illness. This support can help prevent hospitalisation and also avoid therapies that unfortunately no longer lead to disease control and prolongation of life. However, this component of palliative care is still often neglected in paediatrics in this country.

What do you mean?

Eva Cignacco: We analysed the medical histories of 149 deceased children in a national study. We wanted to know how children are cared for at the end of their lives. Among other things, it became clear that the majority of these children died in hospital, in intensive care, rather than at home.

Our study shows that important aspects of end-of-life care are being neglected.

Eva Bergsträsser

Eva Bergsträsser: In addition, all the children received very intensive treatment with a large number of medications in the last one to four weeks of their lives. Many of these medications are necessary, such as painkillers, but the number surprised us - up to 45 medications a day were prescribed.

What do you conclude from this?

Eva Bergsträsser: That very intensive medicine is practised and that important aspects of end-of-life care are neglected.

Do doctors feel insecure when it comes to dying children?

Eva Cignacco: Our study indicates this. Being active, carrying out therapies and prescribing medication is what doctors have learnt to do. However, in order to initiate the dying process, a change of direction in treatment is needed.

However, this change of direction presupposes the moment when it is clearly stated: «From now on, there is no longer any prospect of a cure.» Why do doctors find this so difficult?

Eva Cignacco: Because they don't have enough experience. Palliative care, where it is important to break bad news to parents and to keep quiet with them, is not given enough attention in training in this country. Experts in this field are trained abroad. Like Eva Bergsträsser in England.

Eva Bergsträsser: I also hear from doctors: «The parents weren't ready yet.» But that should be seen in a more differentiated way. Maybe we're not ready ourselves!

Can you give us a specific example?

Eva Bergsträsser: Yes, one from the study. A mother of a newborn reported in an interview about her conversation with the doctor looking after her: that she had the feeling that her child was dying. The doctor sent her home with the words that she should rest. She would be fine. When she got home, the hospital rang her. The child had died in the meantime. Something like that should never happen.

What would you have done differently at the Children's Hospital Zurich if this case had happened to you?

Eva Bergsträsser: I would ask the mother: «Why do you have the feeling that your child is dying?» «How has the child changed?» There needs to be a conversation at the end of which the mother's statement can be better categorised. It is also important that the carers do not change too much.

Ms Bergsträsser, you run one of the few paediatric palliative care centres in Switzerland at Zurich Children's Hospital. So affected families from the Zurich region have been lucky.

Eva Bergsträsser: Our patients don't just come from the Zurich area. And when patients cared for by me or my team are discharged home, we also travel as far as the canton of Aargau in consultation with the GP and Spitex to accompany them. In this way, I get to know the families well and a relationship of trust develops.

It is important for me to emphasise this: Not only death at home is a good death.

Eva Bergsträsser

Eva Cignacco: It is important to maintain the chain of care, which is controlled from the hospital. The hospital is the organisation that knows the family and the child best.

You are calling for this concept to be extended across the board. When will you, Mrs Bergsträsser, be consulted in a case?

Eva Bergsträsser: For me, the point to become active is not the moment of diagnosis, but the moment when the child's condition worsens within this incurable disease and the child and family need more support.

Can you tell us about a specific case?

Eva Bergsträsser: Just today I visited a child and his family who were admitted to the children's hospital last week. The child has a syndromic, very complex illness. These children often have major problems when they develop an airway disease. Due to muscle weakness, they don't have the strength to cough up mucus and contract pneumonia more quickly.

How do you proceed?

Eva Bergsträsser: Once the child has overcome the acute infection, we make an appointment at home. Then we look to see whether the treatment that the child is now receiving in hospital can also be given at home if the child falls ill again. In consultation with the paediatrician and Spitex, I would then support this care at home. That's what the parents want.

A few months ago, the case of a little girl made the headlines. She died in the children's hospital.

Eva Bergsträsser: Lara had a malformation of the oesophagus, which could be surgically repaired after birth, but her entire digestive system was so diseased that she could not be fed normally. She was artificially fed for over four years until no more venous access was found. Due to the serious, complex disease and the lack of any prospect of improvement or cure, it was decided not to extend the therapy any further and to insert a final venous catheter. Here in hospital. She then died in our hospital.

Not at home?

Eva Bergsträsser: I had offered to do this, but the family decided against it for various reasons. It's important for me to make a note of that: Not only death at home is a good death. But then you have to declare it as such: The child is in hospital to die, not to be cured.

Every life counts. Regardless of how long it lasts.

Eva Bergsträsser

If this is clearly communicated, the carers can also behave differently. The carers looked after the girl with great affection. Half the ward was at the funeral.

The moment you are called in for the first time, the parents will surely already have an idea of what it is all about.

Eva Bergsträsser: That's right. Looking back, Lara's parents said that it was a strange feeling to be confronted with the term «palliative» for the first time with such clarity and to have to understand what it meant for their child and for them as a family. But also that they experienced this continuity as so positive. The same person was always there to pick up the thread again and again. Someone who simply had an hour to listen, or who advised them to go on another long weekend together.

What is it like for you when you tell parents that there is no longer any hope of recovery, but that the aim is to make the last weeks and months as pleasant as possible?

Eva Bergsträsser: I don't just find it difficult. It always depends on what attitude you have towards life. Every life has a beginning and an end. There are also children's lives that end earlier than they should. And that can make just as much sense as the end of an old person's life. These children leave important traces on this earth. If you take the view that life itself counts - regardless of how long it is - then perhaps you can also prioritise filling this life with as much life as possible instead of wanting to prolong it at all costs.

How do parents react to this?

Eva Bergsträsser: Very different. For some parents, it's a no-go to say something like that. I would never broach the subject when we first meet. But the more I get to know the family, the more I know how to broach this taboo subject and the more I do so. I don't avoid the subject.

Eva Cignacco: Parents want honest, authentic communication. As part of our study, a mother reported a conversation with a doctor who had been beating about the bush for an hour. She was about to say: «Just say it: My child is going to die.» Doctors who have good palliative care training, on the other hand, can put such a conversation into a good context, a context that allows parents to follow such a conversation.

What does that mean?

Eva Cignacco: You take your time, don't look at the clock, go into a separate room with the parents and explain to them everything that has been done to help the child, how the child has reacted and why you think that stopping therapy, for example, is the right way forward. You discuss with the parents the story you have shared up to that point and see what happens next.

We can do a lot to ensure that the child does not have to suffer.

Eva Bergsträsser

Eva Bergsträsser: This conversation should not just be about what can no longer be done, but what can be done now: «We can do a lot to ensure that the child doesn't have to suffer, that it can die with dignity, that you can say goodbye.»

The worst thing that can happen to a mother or father is the death of their own child.

Eva Bergsträsser: You're right, of course. But it is a long process during which the parents familiarise themselves with this idea. Some children are in a palliative situation for four, five, even seven years.

How long do you look after these families after death?

Eva Bergsträsser: It varies. For some, contact breaks off quickly, others I still call years later.

Parents find the diagnosis more difficult than the children.

Eva Bergsträsser

Mrs Bergsträsser, you once said that parents find it harder to come to terms with the diagnosis than the children.

Eva Bergsträsser: Children quickly make things their own. I once looked after a two-year-old girl with a malignant tumour in her thigh bone. Her leg had to be amputated. Of course, that was a big break for the now young girl. But she experienced it so early on that she is getting through life quite well today.

Was it different for the parents?

Eva Bergsträsser: It was terrible for the parents. Every mum and dad would probably say: I'd rather give up my leg than my child's. Ultimately, however, I would like to say that palliative care can also have something very life-affirming about it. Children have the ability to stand by the lake on the last day of their lives, throw a stone into the water and be happy about it.

All cases - except that of little Lara and two other patient examples - come from the study mentioned in the interview.