On Thursday 15 March, Channel 4 screened a documentary called My Baby’s Life: Who Decides?. And for me, it highlighted the dangerous, narrative-led path the UK seems to be travelling on when it comes to chronically ill and disabled children.
Pro-choice versus anti-life?
The documentary was about chronically, degeneratively or terminally ill children, their parents, and the medical professionals responsible for their care. It charted the horrendously difficult decisions about whether these children would be better off alive or dead.
Let me be clear on two things. Firstly, I am not anti-choice when it comes to abortion or parental rights. Secondly, I am not saying medical professionals are intentionally deeming chronically ill and disabled children’s lives to be less worthy than others.
Also, it’s important to acknowledge that, in some cases, medical professionals have to step in on behalf of a child – whether that be due to unwise parental decisions, religious beliefs or any number of other reasons.
But what I am saying is the life of a child in the majority of cases should be in the hands of the parents, and no one else. And I’m also saying that some medical professionals need to take a long, hard look at the narrative they’re peddling. Because it is extremely dangerous.
The economics of life
We put a huge burden on society with our hundreds and hundreds of mechanically-driven children. For every child that we put… onto a long term ventilator the package is somewhere between £300,000 and three quarters of a million a year. And that is not about rationing healthcare and saying ‘no’. That is about trying to make rational decisions that everybody can live with.
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We all know the NHS is stretched to its limits and that funding has been cut. But, as is seen in the film with Tallulah, that “burden” of ventilators is giving her what her parents consider a decent quality of life. Surely preserving life, regardless of how you view the quality of it, should be a priority to NHS managers above everything else? But herein lies the problem: ‘quality of life’ is not a medical fact. It is a matter of opinion, but is not being conveyed as such.
The language of life
Another child, “Mimi”, has (and I quote the Channel 4 press release) “a potentially fixable heart defect. But before she can get the complex surgery she needs, she would have to live on a life-support machine in hospital for two years”. Wilson says [24:25] of her:
If the family want to withdraw [life support], I genuinely can’t understand why we wouldn’t do that… Even with what we know, she’s not going to be [pause] ‘normal’.
Another professional says of Mimi:
Can this little human, even if she is going to have a limited life, enjoy the benefits of a limited life? It seems that if you can’t have a full belly, or you can’t enjoy swallowing, or you can’t enjoy touching your mother… what else is there…? Actually, this is a child who may not derive really any benefit from living.
For clarity, my argument that a child’s life is parental choice works both ways. In Mimi’s case, the parents chose to have her life support switched off, which is their decision. I would question, though, whether this decision was fully informed, when medical professionals use opinion-based terminology like ‘normal’.
I’d appreciate someone pointing me to the National Institute for Clinical Excellence (NICE) guidelines on “normal” and “limited life”. Because as far as I’m aware there aren’t any. So what we are seeing from these professionals is merely opinion. It’s their opinion on what constitutes quality of life, and they are passing this opinion on to the parents as medical expertise. When Stephen Hawking was diagnosed with Motor Neurone Disease, he was told he had two years to live. He died 55 years later. Was his quality of life not worth living?
Parents should have the right to make an informed choice about their child’s life, free from opinion and bias. On a case-by-case basis, and unless a child is brain-dead, if there is any chance of keeping them alive with the possibility of medical advances or clinical improvement in the future, surely the parents should be allowed to make this decision, without opinion-based coercion? Medical professionals should present the facts, in language free from the personal beliefs they hold about ‘life’, disability and chronic illness. But only the parents should have the final say.
This dilemma is starkly highlighted by the case of Alfie Evans.
As BBC News reported:
Alfie, from Bootle, Merseyside, has an undiagnosed neurological degenerative condition and is being kept alive by ventilation. Parents Tom Evans and Kate James want to take him abroad for treatment.
High Court judge Mr Justice Anthony Hayden ruled last month that the hospital can stop treating him. Mr Evans and Ms James challenged the decision at the Court of Appeal but it was upheld by Mrs Justice King who agreed Alfie should receive palliative care.
The couple have now appealed to the Supreme Court in a bid to overturn the High Court decision.
While the case is complex, in my opinion the dilemma isn’t. The parents want to give Alfie the chance of life, by taking him to Italy for treatment. And yet, because of the nature of the medical and judiciary system in the UK, professionals can overrule their wishes. Based on what? Who’s to say doctors won’t diagnose Alfie’s condition in one year? Or two? Or five? What if medical professionals in Italy could improve Alfie’s condition? What if he lives and turns out to be the next Stephen Hawking? And ultimately, whose right is it to dismiss his life as not worth living? No-one’s, except the parents.
But Alfie’s case, and My Baby’s Life, raise a broader point about us as a society.
In the court papers relating to Alfie’s case, Professor Nikolaus Haas, Medical Director at the Department of Paediatric Cardiology and Intensive Care, University Hospital Ludwig-Maximilians Munich, was cited [pdf, p16] by the judge as having “evidently considerable” “experience and expertise”. Haas is quoted as saying [pdf, p16/17]:
Because of our history in Germany, we’ve learned that there are some things you just don’t do with severely handicapped children. A society must be prepared to look after these severely handicapped children and not decide that life support has to be withdrawn against the will of the parents if there is uncertainty of the feelings of the child, as in this case.
The judge dismissed [pdf, p16] this as “inflammatory” and “inappropriate”, and Haas’s “personal beliefs”.
The history Haas refers to is the Nazis’ T4 euthanasia program – the killing of disabled people, or anyone deemed to have a “life unworthy of living”. The Nazis referred to disabled people as “burdensome lives” and “useless eaters”.
You may think that Professor Haas’s inference that this is what we’re beginning to see now, and me quoting him, is over the top – like the judge did. But it’s not.
History will not judge us kindly
Last year, the head of a UN committee on disabled people’s rights said that our government had created a “human catastrophe” for disabled people in the UK. She also said that the government and the media “have some responsibility” for society seeing disabled people as “parasites, living on social benefits… and [living on] the taxes of other people”. And she said these “very, very dangerous” attitudes could “lead to violence… if not, to killings and euthanasia”.
The attitudes displayed by medical professionals in My Baby’s Life play into this, which is the dangerous part. When you have a government and a establishment class who blatantly consider disabled people’s live lesser than the rest of ours, medical professionals should not be reinforcing this view, indirectly or not. They should be rallying against it: arguing for more funding; fighting cuts; using each child’s life as an opportunity for professional and ethical progression. But instead, they are merely promoting regression.
We already have homeless and disabled people dying as a result of government policy failings. In my opinion, one death because of the state is one too many. And yet, as a society, we’re growing utterly desensitised to what history will probably view as a horrific period in human history. The lives of chronically ill and disabled children in 2018 are in danger of being written into those same chapters in the history books, as well. And we, as a society, will not be viewed kindly for this.
– Support Disabled People Against Cuts (DPAC), fighting for disability rights.
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