I was dismayed when Ryan was brought back to the hospital in relapse again.
I was a trainee paediatrician, a registrar, recently returned to the UK from Papua New Guinea. I felt that some of the agressive medical treatment that was given to children with life threatening illnesses was pointless, unkind and unwise.
Young Ryan had suffered bravely from leukaemia for the last thirteen months. He had spent at least half of that time in the children’s ward and the ward staff all knew him and his family very well.
The small pale twelve year old child was completely bald from the effects of chemotherapy. His arms were scarred from numerous intravenous infusions. He was psychologically damaged, just accepting that the trauma of painful procedures and separations from his family was his lot in life. His illness had separated him from his friends and disrupted his life in school in the London suburb which was his home. The adults around him didn’t know how to talk to him about the things that were really important and the child didn’t ask. Why was he having all these painful injections and yet he was still ill? What exactly did his illness mean? Was he going to die? What was death like?
Ryan’s parents, good people, everyday people, were not prepared for the way their lives had developed. Like most parents they had never contemplated the possibility that after marrying and having children their lives might be devastated by illness, and perhaps even more by the treatment. Decisions about treatment were made by others and they did not have the information or opportunity to question the decisions or to consider disagreeing with them. But they knew that things were not going well. Their little boy was having nightmares. He was miserable and cried a lot at home. He was unwell and listless. He didn’t want to play with his brother or his friends.
They dreaded him going into hospital. He would be hurt physically and he would be so distressed and unhappy. But they considered this was all necessary and in Ryan’s interests because this was what the doctors recommended and because they hoped his disease could be cured. They couldn’t face the dreadful prospect of losing their beautiful child. It seemed unreal and so unfair.
They had their lives to get on with. Trevor, Ryan’s father had to continue working as an electrician or the family would fall into debt. Shirley, his mother, continued with her part time job and looking after Sean, Ryans’s eight year old brother. No one really had time to consider what was the effect on Sean of Ryan’s illness and the huge amount of parental time and attention it demanded.
There was no counselling or discussion with the family about these things. The consultant haematologist and the staff on the leukaemia unit were expert in applying the most up to date treatment. But no one had a holisitic caring role to consider and advise whether all the treatment which was medically possible was likely to do good in the long run. The hospital team knew that Ryan would die soon from his illness but there was no discussion amongst the consultants and nurses, let alone his family, about the pros and cons of continuing active treatment to the end. It was the formula for leukaemia in relapse and therefore it was applied.
After several more days of painful drips, injections, bone marrow tests, lumbar punctures and misery, Ryan died. Trevor and Shirley were grief stricken. Sean his brother didn’t show much emotion. The nurses who had spent so much time with Ryan were distraught and some went to the funeral.
I felt confused. I didn’t share these emotions. This was a tragedy for Ryan’s family but not for me. I wanted to help them but did not feel the pain which they were suffering. I could switch off and I went home and had an enjoyable evening as any other evening.
For some months I had felt that the treatment Ryan was getting was futile and cruel but as a trainee I was not in a position to take the decisions. When he died I felt relief that the young child would not have to go through any more trauma.
In Papua New Guinea, at the age of twenty seven years, I had been one of five doctors for a population of two hundred and fifty thousand people. In London the same population had at least five hundred doctors. In Papua New Guinea I had seen many many people die of illnesses which could have easily been treated successfully if the infrastructure had been available. In the hospital there the doctors and nurses were used to the sadness of child deaths which were an every day event. The infant mortality rate was high and families were used to tragically losing their children.
I could not rationalise that such intensive and probably futile effort had gone into trying to save Ryan’s life when people I knew were not even getting basic health care. Ryan’s death was terribly sad but why should it command so much grief when life in other places seemed so cheap? I could not come to terms with these paradoxes.
Why should I feel more sad about the death of one child in London than one child in Papua New Guinea? I could not afford to be emotionally involved in every death that I had witnessed in Papua New Guinea or I would have been swamped and emotionally paralysed.
Was one life in London so much more important than a hundred lives a few hours flight away? Not to me. In Papua New Guinea death was accepted as an inevitable part of life. In London it seemed to me that death was not acceptable and that any quality of life, no matter how tortured was deemed to be preferable to death. I didn’t agree. Was I callous and uncaring because I wasn’t distraught about Ryan’s death? I had no answers to these apparent contradictions but I felt aware of double standards and moral imbalance.
I was in culture shock and wasn’t prepared for life and work in London.
I booked my ticket back to Papua New Guinea.
The names and details in this article are fictitious.