It is difficult to comprehend that 2019 is almost complete. It feels like yesterday that I was wishing you all a Happy New Year. I hope that 2019 has been good to you.
New challenges continually to arise in the field of palliative care. Within our health system children are seen as adults from the age of 12 years. They are no longer in the paediatric wards, but rather with all the adults. As an organisation, even though we use the word paediatric, we see children up to the age of 18. Through word of mouth within the hospitals we work in, adult practitioners are now referring their teenage patients to us. This has obviously increased our workload, we would love another clinician, but there are also so many issues other than the diagnosis to deal with.
For example, we are working with a lovely young man M.R. He is 14 years old and has been diagnosed with an osteosarcoma of the leg (a cancer tumour in the bone of his thigh). Unfortunately the cancer has spread to his lungs and his prognosis is poor. One of the difficulties we’re encountering in working with these adolescents is the way in which the system treats them. They are technically seen as adults and therefore are spoken to about their disease, treatment options etc without their parents present. Which leads to the other challenge, parents are not allowed to stay with their adolescent children while they are in the ward. A very scary place.
While some teenagers are older than their age, many are still very young. To have the burden of all that information put on you with no one there to help you understand and process can be quite intimidating and overwhelming.
M.R. was in such a position. We had already met him before he found out that his treatment had failed and there is nothing more that can be done curatively for him. When the doctors came to discuss his scan results with them he point blank refused. He phoned our doctor to see if she was in the hospital. Luckily she was and she went to his ward. The doctors then gave him the results and left. Julia was able to sit with him and explain what exactly everything meant and to comfort him. She was also then able to sit with M.R. and his family and explain everything and discuss other options. Both M.R. and his parents stated that without our intervention they would have felt alone, confused and panicked.
We cannot change the system, but we can do is try where possible to meet those adolescents and try and help them understand what is happening to them and just be there for them when their parents are unable. This new angle to our work is challenging but at the same time a blessing. We have truly been humbled by the way some of these young souls are dealing with such big news.
Thank you for helping us ensure that we can be there for them and for all the paediatric patients we see. Without your support none of this would be possible. I wish you and your loved ones a blessed festive season and I look forward to talking with you in 2020.