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Judge: Doctors Can Refuse 'Aggressive Treatment' For Baby Luke
By Dave Reynolds, Inclusion Daily Express
October 22, 2004

LIVERPOOL, ENGLAND--Ruth Winston-Jones is calling a court ruling on her infant son's future medical treatment a partial victory.

The judge, Dame Elizabeth Butler-Sloss, president of the High Court Family Division, ruled Friday that hospitals can refuse "aggressive treatment" to resuscitate 9-month-old Luke Winston-Jones if he stops breathing. They can, however, use manual heart massage to revive him if his heart stops beating, and can arrange for the mother to take him home, she said.

Doctors at two hospitals say Luke has three holes in his heart and has been diagnosed with Edwards syndrome, also known as "trisomy 18". Experts say that most babies with the rare genetic condition usually die before reaching their first birthday. Luke has had two heart attacks and several respiratory attacks.

Doctors predict that Luke's condition will soon deteriorate. They argued that Luke would have a "poor quality of life" if he is placed on a mechanical ventilator.

Ms. Winston-Jones, 35, insisted that her son is "a fighter who had defied the odds" and should be given the chance to continue his fight.

Dame Elizabeth said that Luke's mother clearly had a close relationship with the baby, who "despite all his medical problems, responds to her, lies happily in her arms while she cuddles him and goes peacefully to sleep". She added, however, that Luke might become dependent on a ventilator and that his life would be "not worth living" if resuscitated.

Dame Elizabeth told Ms. Winston-Jones, a single mother, that it was her duty to accept her son's fate and the decision of the High Court "for the sake of Luke".

"The mother must accept the clinical judgment of the doctors who are caring for her child, who will, of course, have in mind what I have said in this judgment," the judge said.

As part of the ruling, which followed a two-day hearing, the hospitals can develop a plan with Luke's mother to allow the baby to go home with her.

After the decision, Ms. Winston-Jones said, "Thank you to everyone for their belief in me."

Winston-Jones' attorney, Muiris Lyons, told reporters, "Ruth has fought long and hard for Luke in what has been a very difficult nine months. He is a fighter who has surprised the doctors who have treated him. All Ruth has wanted is for Luke to be given a fighting chance and today he has been given that."

Dame Elizabeth said she used as guidance another court's October 5 decision allowing doctors to refuse a ventilator for Charlotte Wyatt if she stops breathing. Charlotte, who had her first birthday on Friday, was born prematurely. She gets her food and water through a feeding tube, and has been placed on a ventilator three times because of serious heart and lung problems. If she stops breathing again, she will only be kept alive long enough for her parents to come and be with her when she dies.

Luke was transferred from Ysbyty Gwynedd, a North Wales hospital, to Alder Hey Children's Hospital in Liverpool for tests earlier this month. When it was time to transfer him back to Ysbyty Gwynedd, Luke's mother was told the Welsh facility no longer had the specialized staff the baby needs. Officials with the National Health Services trusts governing the hospitals sought guidance from the court when they could not get Ms. Winston-Jones to agree to let Luke die.

Ms. Winston-Jones indicated that she would not appeal the decision. Charlotte Wyatt's parents had originally said they would not appeal the ruling over her care, but later said they were considering another legal action.

As life-sustaining technology has improved over recent decades, the debate over how long to provide such treatment has intensified. Hospitals, doctors, and medical attorneys have argued that keeping people with severe disabilities or chronic medical conditions on ventilators for long periods of time is costly and seriously impacts their "quality of life".

Many disability rights groups, and other advocates, have argued that medical professionals should not be the ones to judge the value of patients' "quality of life".

Related:
"'Doctors must decide baby's fate,' mum told" (Western Mail)

http://www.inclusiondaily.com/news/04/red/1022c.htm

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