To live or not to live - commentary on infants whose lives become court battles between doctors and parents

 

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Sandra Paterson: To live - or not to live...

16.10.2004  

COMMENT

I'm usually quick to figure out what I think is right or wrong. My mother puts it nicely and says I have "a strong sense of justice". Others would no doubt call me opinionated.

But I have thought long and hard this week about Charlotte Wyatt, the British baby who is to be allowed to die against her parents' wishes, and, to be honest, I am not convinced either way.

In many ways I agree with the judge's decision - letting her go seems the kindest thing to do. But it leaves me uneasy.

Charlotte is 11 months old and lives in a hospital in Portsmouth. Born three months prematurely, she is brain-damaged with severe cerebral palsy and will never be able to sit up or take food by mouth. She cannot see or hear and has chronic lung disease, relying on the aid of an oxygen box.

The doctors asked the courts for permission to let her die when next she stops breathing, saying that each time she is resuscitated she suffers further damage and pain. They told the judge she had "a terrible quality of life".

Her parents disagreed, citing the days they could rock her to sleep, when she gripped their fingers and appeared to recognise them.

The judge, in the end, ruled that she would not be revived next time her lungs succumb to infection.

I think if it were my baby, and if she were in pain, I would let her go. Keeping someone alive artificially long-term is playing God and it is probably better to accept the inevitable.

But I am uncomfortable with this case because it should not be the courts making such a decision.

The moment the law becomes involved, there are implications for everyone else. It becomes a precedent. And the precedent now established by the Charlotte Wyatt case is that the quality of someone's life, as assessed by a team of doctors, can determine whether he or she is worth saving.

Many years ago, when I was a junior reporter, I met another 11-month-old baby who helped to shape my views on the "quality of life" argument. Jay was a blind, intellectually handicapped, epileptic, spastic quadriplegic - one of the most severely disabled children handed over for adoption to what was then the Social Welfare department.

He didn't smile or respond in any way to the couple caring for him, yet he was utterly beautiful.

As I held him, it was the colour of his eyes I noticed, not the fact they couldn't see; the smoothness of his skin and not the way his limbs contorted. I was captivated.

A year later the phone rang in the office late one afternoon. It was Jay's adoptive mother.

"I thought you would like to know that Jay died," she said. "Would you like to come and see him?"

He lay in a little coffin in the lounge, like a perfect porcelain doll, while they talked about how he had enriched their lives. Scores of people went to the funeral - social workers, neighbours, friends, therapists, even a cleaner from the hospital.

Jay had no perceivable quality of life. But he was deeply loved and his short life made a difference.

Of course, unlike Jay, Charlotte is not able to be cared for at home, thus costing the taxpayer, and she is said to be in constant pain.

It does not appear that cost was a factor in the judge's decision, and rightfully so, but the question of whether she was in pain was critical.

I CAN tell in a glance whether my daughter is unwell, or even vaguely unhappy, by the slightest, almost imperceptible changes to the shape of her eyes or the way she holds her mouth.

Ask any parents who have kept watch beside an incubator. After a while they know, better than even the kindest nurse, which side their baby likes to face or when a tube is too tight or a nappy uncomfortable.

So if Charlotte's mother and father say she is not in constant pain, I would tend to believe them.

Ideally, parents and doctors should decide together on the best course of action and this happens all the time in hospitals when machines are switched off and nature takes its course.

But when they disagree, and when the parents are known to be decent and caring, I would defer to the parents. A loving mum and dad generally know what is best for their child and they should be the ones making life or death choices.

But the die is cast and, within months, the little girl's breathing will probably fail again. This time, instead of doctors rushing to resuscitate her, she will be taken from the oxygen box and laid gently in her parents' arms.

Not so long ago, before technology allowed us to save such premature babies, that is what would have happened as a matter of course. Sometimes progress creates as many problems as it solves.

* Sandra Paterson, of Tauranga, is a freelance journalist.

bulletSource: http://www.nzherald.co.nz/storydisplay.cfm?storyID=3601135&thesection=news&thesubsection=dialogue

 

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