Policy change is happening! The Department of Health (DoH) is realising the importance of palliative care and is looking for ways to start implementing it. This is a very exciting time! As a team we have been involved in assisting the local DoH in identifying the needs and how to possibly meet them. Although the focus is still very adult-based, our voice for the needs of children is loud and we are being asked for our opinion and input more often. With services potentially increasing in the future, more children will receive invaluable care in the form of palliative care. The role of Umduduzi will still remain essential as the need is great.
As mentioned last time our play programme had to move from Clairwood Hospital to Prince Mysheni Hospital. This move has been a great success. Nomandla, our play co-ordinator, is busier than ever and loves the new challenge. The children and the staff have benefited greatly from the programme and we are seeing children thrive in a hospital setting due to the additional stimulation, care and support.
Every day Julia and I are amazed by the families and the children we work with. So often the voice of the child is underestimated and unfortunately often ignored. As adults we often feel that we are protecting our children by keeping the reality of their illness away from them. Conversely, these children often feel that their illness is not a topic to be discussed with adults and therefore hold onto their thoughts and feelings. Being brave enough to have these discussions often helps families cope better and help the child prepare for their death.
We had the privilege of meeting SS, a 9-year old boy with leukaemia who had been receiving treatment for 2 years. He had initially responded very well but sadly relapsed, developing brain involvement and his vision was deteriorating. The haematologists, as a last attempt, tried radiotherapy but within a few sessions it was clear the treatment was not helping. Our team met with him and asked how he was doing. “Doctor, I want to know just one thing, is my cancer gone or is it not gone.” With trepidation we replied “It’s not gone my boy. It’s getting worse. That’s why you can’t see so well. “ He smiled with an aura of understanding, “Oh, so what are you going to do?” With a grin we asked “We don’t know, what do you think we should do?” Emphatically he told us that he was not ready to stop fighting and that we should give him more chemo or put him back in the machines.
His radiotherapy was continued until a week later he told his mom, “I am coming home. There is nothing more they can do for me.” His mom contacted us asking what he meant. When we went to discuss it with him his response was, “Oh come on Doc, your machines and chemo didn’t work. The only one who can help me now is God. Let me go home where they can pray for me. I am not scared to die. I just worry about my mom”.
A few months later he died at home surrounded by family, just as he wanted. Without his bravery, telling us what he wanted and what he needed, there is a chance he would have died in hospital away from his family. By having this discussion he got what he wanted for his last days and his family got to celebrate his life the way he wanted them to.