An urgent night court was convened to determine whether a health board's decision not to do surgery on a terminally ill boy would amount to homicide.
A judge ruled it did not, finding it was in accordance with "good medical practice" not to do the life-prolonging operation. The seven-year-old boy died the next day.
A court order banning the reporting of the case lapsed this morning and the details can now be revealed.
Further suppression orders mean the boy cannot be identified, nor can his family or the senior doctors and nurses in charge of his care. All were in favour of the surgery not being performed.
The boy's older sibling had also died after a long battle with the same rare disease.
The degenerative condition began to cause irreversible damage to various organs when the siblings were toddlers. By the end, both were bedridden, unable to speak and in immense pain. There is no cure at present.
Their mother told The Dominion Post after the younger one's death: "You always want the best for your children. You just want to be able to pluck the disease out of them, just remove the disease. Out of love, you want them with you, out of love, you want their pain gone."
Her life had been devoted to caring for her sick children. "It's not even a fulltime job, it was every breath of mine that was dedicated to them. Even when I slept, I listened."
Her seven-year-old had "lived the disease" from the moment he was born. "It was always there for him. It seems to be an absolutely wretched disease."
She would never forget his laughter and sense of fun, which the illness eroded. "It takes away so much sadness, I guess."
The boy had two bone marrow transplants in 2005, both unsuccessful, and the court was told there were no other treatments.
Last October, he had a feeding tube inserted because he could no longer swallow food or medication. On May 4 the tube – which provided almost all of his nutrition and hydration – became dislodged. Surgery was required to reinsert it and doctors said that, without it, he would die within days or weeks.
Senior doctors, nurses and a hospital ethics committee were unanimous that the tube should not be reinserted.
So was the boy's mother. "[The boy] is now completely unable to communicate except that he has some limited eye movement," she said in an affidavit read to the urgent meeting of the High Court at Wellington on Sunday, May 8.
"He often screams out in pain. He is extremely fragile. He is uncomfortable if he is slightly too hot or cold. Passing urine and bowel movements hurt him. When he is being fed, the pain worsens horrendously due to acid reflux.
"I am distressed about the intention to keep feeding [him] when I have seen him in chronic agony when he is fed and hydrated. With an empty stomach, [he] is far more comfortable and seems at peace and does not need pain medication."
A hospital director told the court that the mother was a "wonderful carer of her child, a child who she loves dearly".
Justice Jill Mallon said she was satisfied it was not in the boy's interest to have the operation and it would go against good medical practice. "It would be prolonging the dying period when ... death is closing in. The operation will defer death, but not for long."
It was possible the doctors' inaction might be a crime through neglecting to supply the necessaries of life or hastening the death of a person already dying, but Justice Mallon concluded doctors acting on the mother's wishes had a lawful excuse and their actions would not amount to culpable homicide for the purposes of the Crimes Act.
The boy's father said several years ago he did not want to be involved in his care or upbringing.
LIVING WITH DISEASE
2005 – The boy has two bone marrow transplants, both unsuccessful.
October 2010 – A feeding tube is inserted because he is unable to swallow.
May 4, 2011 – The feeding tube becomes dislodged. Attempts to reinsert it fail.
May 8 – An urgent court hearing is held in the High Court at Wellington to determine the legality of the boy not having surgery to reinsert the tube.
May 9 – The boy dies.
CULPABLE HOMICIDE OR BEST MEDICAL PRACTICE?
May's court ruling relied on two precedents:
Auckland Area Health Board v Attorney-General, 1992: Doctors from the intensive care unit at Auckland Hospital and the Auckland Area Health Board make an application for a declaration clarifying whether they would be guilty of culpable homicide if they withdrew the ventilator that maintained the breathing and heartbeat of a 58-year-old man with an extreme case of Guillain-Barre syndrome. For the past 12 months he had survived in a state of "living death", unable to move or communicate and with no prospect of recovery. The court found that the decision to withdraw ventilatory support would not constitute culpable homicide.
Shortland v Northland Health Ltd, 1997:
A 63-year-old man with diabetes was admitted to Whangarei Hospital with a non-functioning kidney, which meant he would have died unless treated with dialysis until given a transplant. Northland Health refused to allow a transplant and ceased dialysis because the man had dementia and could not understand the co-operation required for his treatment. His family went to court, saying the decision to discontinue dialysis was a deprivation of life. The court found in favour of Northland Health, saying it was consistent with best medical practice. Informed consent of the man's family was not required because long-term dialysis was "clinically inappropriate".
- The Dominion Post
Testing drugs on animals is:Related story: Animal tests 'key' to brain disease cures