Meeting with the pediatric palliative care team at SUS

On Friday, Nina Bakkefjord and Nina Herigstad from Løvemammaene's central board had a nice meeting with the newly started pediatric palliation team at SUS (Stavanger University Hospital) and HBF. The children's palliative care team includes doctors, psychologists, social workers and nurses. 

Nina Herigstad's son is the first patient referred to this team, and already has very good experiences both with meetings and follow-up. It is great that SUS has established such an important team, within a field that needs more expertise and resources to look after the families who have children with an expected shortened lifespan. 

Topics that were discussed are: 

• How to convey the serious diagnosis?

There should actually be someone present from the Children's palliation team when you receive the diagnosis/notification such as:
1. Must be involved further,
2. Knows a lot about crises,
3. Understands that one does not show up for such a conversation with an empty head, peaceful and nice. Most of us have a lot of history with us, regardless of how long the child's illness has been.

We also talked about the framework for such a meeting, and good and bad experiences from which a lot can be learned.

• What do the Løvemammaen expect from the children's palliation team at SUS?

We gave the following input:

• A steady, experienced and fixed contact person we think will help many. That they can come home and get to know each other. So that, for example, the child's pains and ailments can be properly discussed. That they understand the crisis you are in, not just with the diagnosis, but with all the things that come up in everyday life. That they use mapping tools and don't think and that they dare to talk about what you don't want to think about so that you can have a written plan where responsibility is distributed. It is important that the hospital creates a palliative plan/emergency plan/emergency plan together with the family and possibly the staff at the home.

• Availability. The children's palliative care teams in the hospitals must be accessible to the parents.
  "You have to understand what it's like to call out for help to your child, but not get an answer."
  "It must be considered one of the most serious crises one can face knowing that their child is going to die."
  "We are programmed to look after our children and then it feels completely impossible not to be heard. We are so dependent on these doctors. And yes: The plans must include nights, weekends, public holidays, vacations....”

• Interdisciplinarity.
  There should be multidisciplinarity in the entire team. Competence increase for a combined interdisciplinary team. Not just doctors and nurses. 

• Coordinator responsibilities: Our wish is that the family should have a coordinator from the child palliation team who should take responsibility for ensuring that safe services around these families are put in place in the municipality, and also have responsibility for ensuring that the national guideline is followed. Ensure that the families also get a children's coordinator in the municipality.

• There should be a separate brochure for parents and families. 
  The team at SUS is already well underway by preparing its own brochures, and we came up with input on what we think is important to include. 

• The necessity of relief in case of hospitalization:
  If the child has a decision on night duty, the child must also have night duty during the hospital stay. It is always in the child's best interest to have familiar personnel. When the child initially has a night watch, it is because the child often has very complex needs and a need for familiar personnel. BPA must be accompanied during admissions, as they know the children well. It creates security for everyone. When the child is sick beyond the usual and admitted to hospital, the need for relief does not decrease, it increases.

• Contribute to putting good services in place in the municipality around palliative care children. Be clear from the hospital about what the need is. 
  We talked about security around the medical need and focus on national guidelines. The team at SUS will collaborate with the municipalities' own municipal palliative care teams, which we think is good. In Stavanger there are already good experiences with good cooperation. The hospitals should also undertake to a greater extent than today that they will contribute to ensuring that the home municipalities provide proper services for these children (Nina B. can report that she is impressed by how SUS has taken care of several families). The municipality is obliged to follow the guidelines from the specialist health service for the single child. It is desirable that the specialist health service becomes more competent in getting proper help in place in the home municipality before children are sent home. The specialist health service must be clear here. For example, we do not discharge the child until the municipality has a better service offer in place. 

• BPA.
  Many good experiences with BPA also when health care is needed. Think BPA when parents are informed about what it entails and when parents want to have a user-controlled scheme. BPA is the organization that provides the opportunity for the best possible quality of life for the whole family, despite the fact that they need a lot of help and assistance in everyday life. 

• Mental health care.
  This is a miserable situation in many municipalities.
  Our experience is that there is a lot of focus on young people's mental health, but it is spread to everyone, without good offers for those who need more than "green and red thoughts". Parents need to be informed about thoughts that are common in such a very unusual situation. Among other things, it is not rare that when you are standing in everyday life without enough help, or with a child who is in terrible pain. Then parents think the thought. Would it have been better for my child not to have been saved? I contribute to keeping my child alive for my own sake. Both of these thoughts create guilt and shame. Parents think there is something wrong with you because you come across such thoughts. These are completely normal thoughts and sometimes it is also the case that perhaps the child should not have been saved? 

• Emotional care of both the sick child and his siblings
  Families must receive information about what offers are available. We know many families who say that they miss an offer and follow-up for both the sick child, but also that it is difficult to find offers for siblings in Stavanger and the surrounding area. The hospital is also responsible for looking after siblings as relatives. The sibling needs relative support regardless of age. For some, it is best for it to be given by those who know them well, e.g. nursery school, health nurse at school, but then they have to have expertise in grief. Can a psychologist in the Children's palliation team provide guidance to those who have to look after siblings in their home municipality? Create a relationship with the siblings before the child dies, so that those who will look after them as siblings afterwards are not strangers to them.

• Plans for both a good life, but also as good a death as possible for these children and their families. Emergency plan. Plan for the last phase of life and plan for follow-up after the child's death. Medicine escalation plan (medicine chest).

The lion mothers thank you for the invitation! It was very nice to be able to contribute experiences and knowledge from the Løvemammaenes child palliation committee, and we found the team to be very responsive and motivated to do a good job, as well as elevate the professional field.