Jean was born in New Zealand into a Korean family. She had an older sister with severe autism who was 7 years older than her. Our palliative care team met Jean a few months after she had been diagnosed with an aggressive brain tumour. Her parents had taken her back to Korea for some experimental radiotherapy but, soon after she returned, it was apparent that her cancer had continued to grow. Before her brain tumour, she loved school, was very gifted at art and piano and very sociable. She was clearly adored by her family and had some very close friends.
When we met Jean and her family for the first time, she had not been at school for a number of months as she would get very tired. She also had some weakness in her arms and hands which made it more difficult to do normal school work. One of the main issues for her family was that, according to their cultural beliefs, they did not want Jean to know she had a brain tumour or that she would die from it. Their job was to keep her happy.
Over the first few months that we worked with this family, we were able to address some issues. We organised for her to get back into the school system and a school teacher would visit her once or twice a week to do school work at home. We organised for various therapists to work with her and her parents to help with some of her mobility issues. We also organised for the child psychotherapist on our team to visit her weekly to explore any concerns she had. Jean loved all of these things – she was definitely a child who thrived on having people around and was very engaging – drew everyone in with her warmth and energy – and was always sad when people left.
From our team’s point of view, the child psychotherapist was very important. She built a lovely relationship with Jean and, even though they were not able to discuss her disease or impending death, Jean was able to communicate about this on other levels. In the sand tray, she would often make graveyards and use coffins – this was a way of her letting us know she did know what was happening without having to say it out loud. She was also able to say, however, how loved and secure she felt in her family. Despite the concerns of many of the health professionals involved with her about her not being told ‘the truth’, she never showed any signs of distress and it was important that we supported the family to hold on to their cultural beliefs.
About 5 weeks before Jean died, she had a very major deterioration which left her completely immobilised and unable to speak. The only movement she had was being able to move one hand. This created a lot of stress for our team as we were very concerned about how she could communicate any emotional distress. Initially we got her a board with various pictures she could point at for things such as needing food, toilet etc but also feeling angry, sad, worried and so on. However, this required quite a bit of effort and she did not use it very often. Her main communication was by doing thumbs up or thumbs down to let us know what she needed. Whilst we were concerned that she might be very frightened, when the child psychotherapist used this system and used a variety of emotional states that she might be experiencing, the only one she consistently indicated was feeling bored! With this established, we encouraged her family to read books, play music and so on. Over the weeks, whenever we visited, she was surrounded by beautiful classical music, having daily massages and had a pile of books by her bed.
One of our concerns was to give her some strategies to deal with the situation without compromising her family’s wishes. The following story came out of that concern:
Janet’s story about Jean
Once upon a time, there was a beautiful young girl named Jean. She lived in a house with her mum and her dad and her big sister. She loved to run and play and dance. She drew beautiful pictures and made lovely music on the piano. All her family and friends loved her and she loved all of them back. One day something happened and she couldn’t do all the things she did before. She was still Jean and everyone still loved her and she loved them too but her body wouldn’t work how it did before. Sometimes this made her sad and sometimes she got really mad that her body wouldn’t work properly. But then she realised that there was something that did still work really well – her imagination. When she felt mad or upset, she would lie back, close her eyes and think about making beautiful pictures and lovely music – she could do wonderful things in her mind. She could run and dance and hug all her family and this gave her a big smile inside. So now she knew how to create a lovely world inside her head and this made her very happy.
The End
I never expected what an impact this story would have. She loved it and would ask everyone to read it to her. The family got it laminated and decorated it with flowers and they pinned it to the top of her bed. Visitors would read it to her and the child psychotherapist would finish every session she had with the story. It became very important to all.
We managed her symptoms of pain and seizures with oral medications initially and a subcutaneous infusion in the last few weeks of her life. She stayed conscious and communicating with her family until the last few hours.
Jean died surrounded by her family. We feel that her experience of palliative care was of mutual respect, of meeting her individual needs and of helping her to find the joy and happiness that was her parent’s ultimate aim.
Quality education is the only way to ensure that more children with a life limiting or life threatening condition receive the holistic support that palliative care provides. Children attended to by a health professional trained in the principles of palliative care will experience a better quality of life, better pain and symptom control and the appropriate care at the time of death. Consider helping children like Jean access palliative care by giving to the ICPCN Christmas Appeal 2016. This project will help fund ICPCN training and education programmes. Click here to donate.
© Touching Rainbows, ICPCN, 2012
ICPCN publication Touching Rainbows can be purchased via the ICPCN website
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