Sentenced to Die. by Medical Ethics?

Article excerpt

Byline: Alison O'Reilly

IT IS the diagnosis every parent lives in dread of hearing: I'm sorry, but your child has a malignant tumour. And in the case of little Kasey Kelly, there was no good news to soften the blow. When her mother, Michelle Kelly, was told by doctors at Crumlin Children's Hospital that Kasey had fallen ill, it was made clear that she was unlikely to survive.

Because the tumour was located on Kasey's brain stem, it could not simply be cut out: ahead lay a gruelling regime of surgery and chemotherapy. And even at the end of that process, her chances of survival were little better than one in 10. The doctors got to work and Kasey began her battle for life.

But then came a ray of hope. Single mother Michelle, 23, had been frantically searching for help outside of Ireland, and had sent Kasey's medical files to Dr Susan Chi in the Dana-Farber Cancer Institute in Boston.

Dr Chi's reply seemed like a miracle: she was optimistic that Kasey would respond well to her treatment. Incredibly, the US doctor said she would give Kasey, now 14-months-old, a 50% chance of survival.

The only barrier was the cost. The treatment alone would cost [euro]450,000, excluding accommodation and living expenses. Again, though, there was a ray of hope: Irish citizens can avail of the HSE's treatment abroad scheme, which will pay half or more of the costs of an operation abroad which cannot be performed here. The sum Michelle needed would be cut to a far more realistic [euro]225,000, possibly less.

All she needed was for Kasey's doctor at the Crumlin - a widely respected and much-loved oncologist - to sign the form recommending the treatment abroad.

But to the family's astonishment, the doctor wouldn't sign. Despite their entreaties, questions in the Dail and the intervention of their local TD, he felt unable to send the little girl in his care for a course of treatment which he does not believe in. Ethically, it became clear, he could not send her for treatment 'under false pretences'.

Kasey's family have requested that the oncologist not be named, unwilling to risk the chance that their medical drama be viewed as a personal clash.

But what the doctor's decision means is that he is at odds with the family of the little girl whose life he is trying to save - while a young mother feels her daughter's best chance of living is to get the treatment in the US.

And between them, her life ebbing away, is a little girl who understands nothing of HSE rules, medical ethics or money.

Kasey, who weighed 7lbs 10 ounces, was born healthy and well on New Year's Eve 2010 at Dublin's Coombe Hospital. However, Michelle, from Tallaght, said she had found her pregnancy 'difficult'.

'I was sick all the time; it definitely wasn't plain sailing,' she said. 'I was up and down and never felt well at all but the birth was fine and I was so delighted to finally meet her.

'For the first few months she was thriving, she was just like any normal baby, sleeping well, eating and bonding without any problem.' Then last Halloween, when Kasey was 10-months-old, Michelle became concerned when 'out of the blue' she began vomiting.

'At first I thought it was a viral infection, but she just seemed so sick. My dad was very concerned because her eyes seemed fixed and she was staring straight ahead. He had her on the bed upstairs and he kept saying there was something really wrong.

'So we brought her to Crumlin Children's Hospital, where doctors carried out tests for around six days.' Once in hospital, Kasey's behaviour changed dramatically. She began pulling her hair out and hitting her head with her fist before taking seizures.

'We were terrified,' said her doting grandfather, Derek, 44. 'Michelle was walking the floors with her as she screamed the place down. She was in terrible distress.

'It wasn't normal behaviour, so we demanded they carry out a brain scan. …