I DARE TO SPEAK OF DEATH, SYLVI

My son Oscar died at home. That was what he wanted.
One year ago, I held my child as he breathed his last breath.

Around us there were candles, two nurses who knew him almost as well as I did, an aunt who loved him, three plates of half-eaten food and the outerwear of a brother who had left for the swimming pool and had forgotten his jacket in the process.

The priest had just left the house.

The assistants who had gone off duty just before had kissed my child on the forehead, shed a few warm tears on him and said goodbye. As they had done every shift for the previous five days. Like everyone else who loved him.

When Oscar died, it was safe. The same way he lived.

I consider it a gift that he was allowed to die in a good way. It is by no means a foregone conclusion.

Oscar died at home. 
That was what he wanted. I thought beforehand that I wanted it to happen in the hospital. That it would be safer to face death in our permanent children's ward with well-known doctors and nurses around us.

Now I am deeply grateful that Oscar's life ended warm, soft and calm while we were surrounded by our people, sounds and smells. Pain-relieved and loved. At home in your own bed. Assisted by a palliative care team.

Head of the Association for Child Palliative Care (FFB), Natasha Pedersen, writes in a reply on NRK Ytring that families in our situation need to get "a breathing space". She is looking for a place where a professional environment with specialist expertise in child palliation can take care of the dying child. She does not mean at home, not in a well-known children's home or in a well-known hospital ward. But at a children's hospice in Kristiansand.

Public Health Minister Sylvi Listhaug has become involved in the case.

IN Today's Medicine On 5 December 2019, you, Sylvi Listhaug, write that it is the freedom of choice that is not good enough when we reach the end of life.

It seems that you want children's hospice to become an option in Norway, as it is in our neighboring countries. You have also been on trip to children's hospice in Sweden and Denmark.

I consider it a gift that he was allowed to die in a good way. It is by no means a foregone conclusion.

Your text has no clear conclusion, but it worries me that you do not describe visits to the interdisciplinary pediatric palliative care environment at OUS. That you do not have depictions of the reality of the palliative care teams at the various healthcare institutions. Those who don't have the resources to be open outside of office hours, so it's fine if the dying can happen between 8am and 3pm on weekdays, you know.

The child palliative care teams we so badly needed did not exist yet when my child died in October 2018. Now they have started up in Oslo, but I can't find any minutes from your visits there.

I think it is sad that you do not describe your conversations with the staff at the children's wards around the country who treat these children and who know the situation from the inside.

And I'm surprised that you also don't write about how you use resources to find out how the guidelines for child palliation from the Directorate of Health are followed up.

The guidelines came in 2016 and recommend that each health region and each children's and youth department set up multidisciplinary children's palliative care teams, and that the specialist and municipal health services establish a formalized collaboration for the best possible organization of the offer.

The most important question is still asked by Einar Bryne in his chronicle on NRK Ytring 8 December 2019: What do the children themselves want?

Have you asked them, Sylvi? Has anyone asked them?

I suspect the answer is no. 
Unfortunately, these children are rarely asked about anything. They do not live simple lives.

It is not a matter of course that they are treated with dignity, that bureaucrats and politicians understand or want to understand what is in the child's best interests.

My child was connected to between four and six intravenous pumps.

We parents often take on overwhelming responsibilities so that the children will survive as long as possible and have the best possible time.
My child was continuously connected to between four and six intravenous pumps and had four stomas on his stomach in the last years of his life.

His advanced medical care was my responsibility since he lived at home. I was the day-to-day manager of 23 staff assistants and I was responsible for his life being good - despite the medical challenges. That he could be with other children, play, learn and laugh.

I am grateful for every minute I got with him, but I wish I could have played a little more and fought a little less so that his life would be good. It is often difficult to be heard when you have precious children. I consider it a gift that he was allowed to die in a good way. It is by no means a foregone conclusion.

I dare to talk about death, Sylvi Listhaug. 
You request it in the text at Today's Medicine. I agree that it is important. It is great that you want to be in dialogue with those of us who have lived with death closely, often for many, many years.

But I sincerely hope that you will not allow a small interest association, such as the Association for Child Palliation (FFB) to take the lead in important political decisions.

Although the association is very active in work aimed at politicians, this does not mean that it represents a majority of parents of dying children. I myself have been a member of the association, but opted out because of the very one-sided focus on children's hospice.

For my child, the hour-long ambulance ride from Svelvik to Ullevål was a nightmare.

It is terribly difficult to imagine that parents in Alta, Bergen or Oslo will transport their terminally ill child, siblings and themselves to a children's hospice in Kristiansand. That they should train a whole new staff in advanced equipment and routines that are specially adapted to their own child, the child's favorite toys, songs and activities.

For my child, the hour-long ambulance ride from Svelvik to Ullevål was a nightmare of pain and enormous resource-demanding.

We live in a country that has great schemes if they are used according to the intentions and provided with enough resources. We have systems that give us opportunities that are lacking in many of the countries that have invested in children's hospice instead.

We have professional communities that are eager to be allowed to start pediatric palliative care teams in the manner described in the guidelines for pediatric palliative care.

But freedom of choice is worth nothing if there are no real choices.
Above all, make sure that there are 24-hour child palliative care teams throughout the country, so that we parents can accompany our children to death in a calm and dignified way. Without having to tear the sick person, siblings and parents away from their immediate environment, school and work for an indefinite period of time.

Let the choice options be well-thought-out, scientifically sound and practically feasible. Use the resources on the professional environments that already exist.

It is often difficult to be heard when you have precious children.

My Oscar was surrounded by everyday life and family during eleven years of illness. He made friends and helpers who could stand what he had to suffer through on his tortuous life path. He was allowed to play, laugh and fool around every little second he could bear.

When he died, it was without turmoil and in exactly the same way as he lived.

Pain-relieved, surrounded by love and helped by people who knew their jobs and who knew his every little signal.

How it ends matters so much when you have to live on without the best thing you have.

– Chronicle in NRK by Catharina Dørumsgard, member of the Løvemammaenes Child Palliative Committee.