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It feels as though every few months there’s another harrowing court case involving cessation of life-prolonging care in a young child.
Reporting of these tragic episodes has settled into a predictable format: the photos of the baby, seemingly perfect but for the endotracheal tube protruding from one nostril; the interviews with the grief-stricken parents; the campaigners with placards, teddy-bears and – sometimes – creepy social media threats for the intensive care staff.
There’s another common theme, as well. In the news bulletins, in the carefully-crafted newspaper think pieces, even in the judge’s summing up, a certain phrase appears again and again: ‘Any parent would…’
It’s a kind phrase, meant to express empathy as well as sympathy. It says: we understand these people’s desperation. We have tried to stand in their shoes. We see how wrenchingly painful any decision in these hideous circumstances must be.
It’s a kind phrase, and kindness, in these acrimonious disputes, is valuable. But truth is valuable too, and this well-meant cliché is not true.
Not ‘any’ parent would fight tooth and nail to prolong the life of their dying child. Not ‘any’ parent would reject medical advice in a desperate search for a miracle. Not ‘any’ parent would strive to keep their baby breathing at all costs, even through intensive and painful medical intervention.
I can state this as a fact, because I’ve had the privilege of meeting some of the other parents. I once sat in clinic with a mother who, after bitter indecision, turned down a life-prolonging but non-curative treatment for her baby’s degenerative disorder.
She could not face, either for the baby or herself, the vista of progressive symptoms, increasingly frequent hospital admissions, and ever more invasive treatments that the child’s life would be.
The rest of the consultation was spent in discussing measures for the baby’s care and comfort. But there was one other piece of advice I had to give that mother before she left.
I told her to get off Facebook. To leave social media, to turn her back on the previously supportive parents’ forums, and to tell no-one except trusted friends and family about her decision.
Otherwise, she risked facing real hostility from people who disagreed with her, at a time when she would be least equipped to deal with conflict.
After all, if the media repeatedly tells us that ‘any’ parent will fight to the bitter end, what kind of unnatural, inadequate parent is it who accepts palliation?
Some parents are indeed unable to accept the inevitable, and they deserve our pity, understanding and support. But many, many others look death in the face and approach it with acceptance as well as grief, and they deserve our admiration.
By the Secret Doctor
Read the blog and follow @TheSecretDr on Twitter and on Facebook
Very well written; these parents care more than anything about the quality of life for their child. I have the deepest respect for them, and support this decision. We need to allow also ourselves to let go sometimes, always in the interest of the child
Completely agree with you. Such a well written piece, in contrast to so much that gets published in our news media and stokes the fire of these ill-informed campaigns.
Very well written. This extends to parents making choices on an unborn child. Society, through social media, has too much of an opinion when these parents need as much support as possible in making the hardest decisions of their lives.
Such a shame this is only going to be read by doctors, not the people who most need to hear it
One of my patients had to watch her ten year old son fit for three days before he died of a brain tumour. She couldn't get it out of her head. Euthanasia should be available. If you wouldn't let your dog, cat or horse die a miserable death then why should we forced to have our children and other loved ones, as well as our selves suffer to the bitter end. Just to appease the God Squad?
I agree with the last poster - a shame this well written point of view is only going to be preaching to the converted (doctors) and wont be shared with the general public. Could you consider passing it on to the press? (I suggest not the Daily Mail or Telegraph!)
I needed to thank you for this good read!! I certainly enjoyed every bit of it. I've got you bookmarked to check out new stuff you post…
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This blog is read by non medics too!