Increase Paediatric Palliative Care in KZN, SA

As a team we are starting to see more and more teenagers. Within the South African Health Care System once a child reaches 12 years of age they are seen as adults and are moved out of the paediatric wards into the adult wards. This in itself presents huge challenges as they are so young yet their caregivers are not allowed to stay with them as they are in the paediatric wards. As an organisation we see children up until the age of 18 years.Our work has started to be recognised by the adult practitioners and therefore we are receiving more referrals from them.

Teenagers are tricky at the best of times but add a life-threatening or life-limiting illness into the mix and the challenge is greater. having said that though some of our biggest lessons have come from this group. Take Patient L. He is a 17 year old boy with an osteosarcoma (a bone cancer) in his left leg. He has gone through all his treatment, which included an amputation, and was for a short time in remission. His cancer however returned in November 2019. His parents were very keen for him to start treatment again.Shortly after Christmas he sat them down and said he does not want any more treatment. He told them that he knows he is dying and that he is ok with that. He told his parents they have 2 months to mourn him because he has started a NGO and they need to continue his work. L also decided he wanted to plan his own funeral. He has written down exactly what he wants to happen - who is talking, what songs are being sung and what Bible readings. He has also met the undertaker and designed the pew leaflet (which he's asked to see a proof of!). 

It is incidents like this that truly highlight the importance of palliative care. L has known from the outset what his diagnosis is, what treatment options are available and what would happen if the cancer came back. He has therefore been able to have honest conversations with his parents as well as make choices that work for him. His family in turn have been able to prepare themselves emotionally for this time and they are making beautiful memories together. They also know that when he does die that they will be fulfilling his every wish for his funeral service. Meeting someone like L has been a very humbling experience and one that has entrenched for all of us that the work we are doing is important.