An informed decision to let life go may be more humane than saving a severely ill baby without considering its future
Polly Toynbee
Friday November 17, 2006
The Guardian
"Baby Butchers Launch Attack!" That was how pro-life campaigners reacted to the Nuffield Council on Bioethics' well-reasoned new guidelines on withholding treatment from premature babies. Their objections were echoed more politely by other religious groups: the Society for the Protection of Unborn Children called it "nothing short of eugenics". The BMA opposed any "blanket rules": it wants decisions left to the widely divergent practices (and beliefs) of individual doctors.
The Daily Mail's front-page photo of a five-year-old - "Now doctors say babies like her should be left to die" - found one of the infinitesimally few healthy children born at 22 weeks' gestation who survived against all odds. Her mother says: "Medical staff are not God and they should never be allowed to decide if a baby lives or dies."
But others will remember the baby Charlotte Wyatt. Her case was much championed by the Daily Mail, which no doubt encouraged her parents' fateful decision to demand every medical intervention to keep her alive. The Mail was unabashed by this story's less than happy ending. Charlotte was born three months premature with severe brain and organ damage, and her case became a right-to-life legal battle between her parents and doctors. Now aged three, she is still in hospital with oxygen and other tubes. Social services are searching for a foster home: her parents have separated and her mother visits infrequently as she has three other children. But with a shortage of 10,000 foster parents, the child may stay for ever in hospital. Few would think this a life well saved.
The Nuffield's eminent group of professors of law, medicine and ethics drew up the guidelines in response to the rising number of premature babies and the wide variation in their treatment. They recommend that babies born before 23 weeks should not be resuscitated, as only 1% of these survive and a high proportion of those will suffer severe disabilities. Between 23 and 24 weeks the prognosis is poor - most die and two-thirds of the survivors end up disabled - but they say parents should make the final decision. Once a baby reaches 25 weeks, intensive care should normally be given, and half will live. (An unintended consequence of this report will be an end to the anti-abortion lobby's claim that the abortion laws need tightening to lower the current 24-week cut-off: this report does not suggest a 24-week foetus is viable.)
At the report's official launch Dr Jane Campbell, the distinguished campaigner and convener of the anti-euthanasia group Not Dead Yet, complained that no disabled person was on the committee. Why didn't they consult those who wouldn't be there now if they had been allowed to die at birth? How does anyone else know what is or isn't a tolerable life? She is one of those campaigners who regards letting any life go on the grounds of extreme disability as akin to genocide of the less than perfect. They see abortion and non-resuscitation on the grounds of disability as an assault on the validity of their own lives. But that leaves out the wishes and the lives of parents. When it comes to foetuses and newborns, their fate depends on their parents' willingness or ability to sacrifice themselves to bring up a child whose own quality of life may be very poor.
At the heart of this report is the message that parents must be given written information explaining the risk of severe disability. Doctors have trouble describing probability; parents have trouble estimating it, often investing too much hope in slender odds. As in baby Charlotte's case, parents often can't predict their own ability to cope. Worse still, they may be deceived by the round-the-clock, one-to-one care in an intensive-care baby unit. If they imagine that anything resembling that kindness awaits them outside the hospital doors, they are in for a shock. Hospitals spend a fortune on each day in intensive care, but social services have no such funds. Only in an ideal world would money never be a consideration in life-and-death decision-making, whether in providing drugs or care; the report is graphic about the costs involved.
All these new parents should be given copies of Henrietta's Dream by Henrietta Spink, a warning of the battle ahead to get the necessary care. Thinking about the Nuffield report, here is what Henrietta wrote to me yesterday about the birth of her second severely disabled son, who was saved by massive medical interventions: "Had I known what we would be put through over the next 15 years of his life - even though he is my passion, my life and my joy - I would have wished he had died at birth. With a first profoundly disabled child who, aged nearly 19, has not developed further than 3-6 months, I would know we could not survive without support with a second profoundly disabled child. We have lost our house, our jobs and any form of stimulating lives for ourselves. We don't get holidays and we hardly socialise. For 19 years we have put our children first and I have no regrets - my love for them will never die - but oh I so wish for just a little life for myself. To give us all quality of life by providing a proper care package would only cost half the amount of abandoning the boys into full-time care.
"If the government intends leaving people like us in a downward spiral of no existence then the very least they could do is legislate that euthanasia becomes legal. There is no point in spending hundreds of thousands of pounds to save a life and then sending the individual home with no support. It's inhuman, degrading and soul-destroying, and I would rather not exist if the next 19 years are going to be the same."
She has taken her local authority to court, only to discover that the law leaves it to councils to decide what level of help to offer, with the money not ringfenced. But local directors of children's services face an ever-increasing number of severely damaged children in need of help, and it's breaking their budgets. David Hawker, Brighton's children's director, now has one child costing £9,500 a week and another costing £4,500, with more in his care every year: it is not just premature babies but many more disabled full-term babies who used not to survive. So he is now cutting his youth services, the ones that will protect other troubled children from care or jail before long. He and the other children's directors now want a ringfenced fund to pick up the bill for each severely disabled child, to protect the rest of the children's budget. Meanwhile, the government's strategy-unit survey showed that 77% of families could not get basic equipment such as wheelchairs and hoists: they soon become the very poorest families.
Shellshocked new parents are unlikely to have thought about any of this at the sudden arrival of a very sick baby. They probably never met a family falling apart under the strain of a severely disabled child: even the best help of the state would never take that away. Suddenly confronted with a tiny baby fighting for breath, they need all the information these guidelines can give before making decisions. Sentimentality or right-to-life rhetoric is no guide.
Henrietta's Dream, by Henrietta Spink, is published by Hodder and Stoughton www.henriettasdream.org polly.toynbee@guardian.co.uk
