THE FOUNDATION OF THE PALLIATION OFFER FOR CHILDREN AND YOUNG PEOPLE SHOULD BE ANCHORED IN THE PUBLIC HEALTH SYSTEM

"To make one's neighbor responsible" is the title of the chronicle about children's palliation written by the general secretary of the Association for Children's Palliation. Løvemammaene acknowledges that FFB has put child palliation on the agenda for many years, but we disagree with many of the claims in the chronicle.

The Løvemammaen agree that professional discussions are necessary to strengthen the area, improve understanding and increase the diversity of needs within this professional field.

In the spring of 2019, I wrote in Dagsavisen:
"Our dear son, Jermund, was born with a serious illness and needed advanced medical treatment for the rest of his life. He would never recover and death would occur before he was an adult, but we did not know when. The years passed and we as a family found moments of joy and happiness along the way. The days were filled with advanced medical treatment and eternal battles against a municipal aid apparatus, at the same time Jermund's health was steadily deteriorating. We did not want to spend the last weeks and days of Jermund's life in the hospital, but in the family home. We then experienced being left quite alone."

We experienced great collaboration and always being taken seriously in the medical professional environment at Rikshospitalet. When we were at our holiday resort in Sørlandet, we often visited Sørlandet's hospital for treatment. There we were always greeted in a wonderful way, and they reassured us in the unsafe situation we found ourselves in. 

The cooperation with the local municipal support system was unfortunately characterized by conflicts, a lack of safe and good relief and a municipality that wanted to institutionalize our son instead of contributing help into the home. The challenges with the municipal aid system in the terminal phase and the absence of bereavement support and follow-up from the municipality have left a deep mark on both children and adults.

Jermund was a child who was easy to like, and he was much loved by the family and the many people around us. Even though it was a stressful life, we would have liked to have lived life with Jermund again, but the absence of a municipal aid means that we would never have been able to do another round.

Child palliation is not only about relief in the last phase of life, but also about having the best possible time with your family for all the days that the child will live, regardless of how many days there will be.

In NOU 2017:16 On life and death, the committee points to areas within child palliation that need to be strengthened; education, research and round-the-clock multidisciplinary children's palliative teams associated with the health institutions. It is therefore important to have an interdisciplinary offer that includes preventive, curative and habilitation services.

In 2019, the Directorate of Health carried out an investigation, commissioned by the Ministry of Health and Care, whether children's hospice should be a natural part of the health and care service in Norway. Children's hospices in other countries were looked at there. The conclusion was crystal clear; the introduction of children's hospice in Norway now will not have the effect of increasing the quality of the provision of health and care services for children and young people. The committee emphasized that the efforts for good palliation must come in the right order. There must first be a development and quality improvement in the public health system.

The conclusion was crystal clear; the introduction of children's hospice in Norway now will not have the effect of increasing the quality of the provision of health and care services for children and young people.

Jermund needed the specialist health service right up until he died. The regulations ensure that children who are to die at home are discharged and follow-up becomes a municipal responsibility. We badly missed a team, well rooted in the specialist health service, who could accompany us on the last journey and in the time afterwards.

In Stortingsmelding 24 on "Palliative treatment and care" which was tabled on 30 September, Bent Høie, on behalf of the government, promotes establishing a children's hospice in Kristiansand. It is surprising and disappointing that the crystal clear recommendations from a collective professional community and most interest organizations are ignored.
In January, Minister of Health Høie sent out a task document to health institutions about the establishment of children's palliative care teams, but it did not come with earmarked funds. It is also correct that in June an allocation of NOK 600 million was set aside for the health institutions. The funds will mainly cover extra costs due to the corona pandemic. Time will tell what remains for the child palliation teams.

In comparison, Helse Sør-East has set aside only NOK 2.2 million over three years to start up and operate a child palliation team at OUS, while Helse Midt and Helse West have set aside one million and zero has been set aside in Helse Nord.

We are concerned about the uneven distribution of funds. 60.8 million fresh funds are allocated for the establishment of palliative units for children and young people to be operated according to the hospice philosophy, 30 million annually is earmarked for a children's hospice with 4 places. None of these funds are thus set aside for children's palliative care teams who can come home to the children where they live.

The lion mothers believe that the statement that children's hospice will provide freedom of choice and diversity is not correct. There are no alternatives locally where the families live and live their lives. Therefore, there is also no freedom of choice for the children who will die and their families.

CHRONICLE in Fædrelandsvennen written by Anne Kristine Risvand Myrseth, 
member of Løvemammaene's child palliative care committee and of the Research Network Children in Palliative Care (CHIP) anchored at Oslo Met.