Wednesday 30 March 2011

The Price of Life - Making Sense of it All

I finally watched the BBC2 documentary The Price of Life , being abroad at the time of broadcast, I was unable to watch it until now.

I was suprised that I wasn't shocked or even angered by some of the statements. I've heard a lot of sentiment before, particularly some of the more shocking statements by NHS commissioners questionning the "value" of resuscitating 23 weekers.The amount of money it costs to keep a baby in NICU is staggering. There are no two ways about it. It's expensive. There is a lot of need in the NHS, and a lot of people who need support, help and medical innovation. Medicine is expensive. I think the questions raised in this documentary are valid and do need to be asked, discussed and thrashed out.

What I was touched by in this documentary was the delicate positioning of the stories of these special babies, against the backdrop of the financial arguments as to whether this is good use of NHS money. I found the points raised were thought provoking, and interesting, if at times, very alarming.

I feel that the documentary raised a lot more questions that it answered, which is a healthy thing. Surely the biggest quandry was that one of the babies featured, Matilda, had a relatively smooth course through NICU, and was discharged home with her family. Adam Wishart was saying "no one is questionning whether Matilda should have been saved", yet of course, that is the very question. Some 23 weekers will be healthy, happy children. Not all, not even most, but if we routinely, as they do in Holland, allow these babies to die, are we robbing potentially healthy babies of a long and happy life. Do we, as a community, say "well we've prevented x number of babies growing up with disabilities?" and are happy that we've allowed a certain number of potentially healthy babies to just slip away? Do we overlook the people that do have disabilities that live full, happy, and productive lives? I was very concerned that this documentary did not prevent a balanced viewpoint of life with a disability.

What I'd like to do over the coming days is look at the three points the documentary maker made at the conclusion of the programme.

1. More money needs to be invested in addressing the rate of premature births in the UK and aiming towards reducing this number. In particular the documentary touched on the fact that poverty is believed to be a big factor, and I am interested in learning more about the relationship between poverty and premature birth.

2. Balance in decision making needs to be shifted back to doctors and away from parents.

3. Lifelong support needs to be given to those premature babies who are disabled as a result of their early birth.

I am very grateful that the BBC has screened this documentary, and helped to raise the awareness of these precious babies born at the edge of life, and I do hope it promotes debate, and some resolution in terms of NHS policy and procedure, and brings better consistency in decision making.

3 comments:

  1. Looking forward to your posts. Good to have you home x

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  2. I agree with all you've said. My son is 18, and was born at 25 weeks gestation. We had plenty of support up until he was 5 years old as there were various problems with him, but as soon as these were seen to have been 'stabilised' the help tailed off. We are now under a Cardiothoracic Counsultant as there are problems resurfacing again with his lungs but I do wonder that if this was monitored somewhat better throughout his childhood/early teens then maybe it would have been picked up sooner.

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  3. I agree that the questions need asking, but I think that they need asking in a less leading way. For me this documentary went beyond this, rather making an argument against spending the money on these babies. It made it ok to suddenly ask 'is life worth the money'? I don't think this should be a question at all. I think the answer has to be prevention so that the amount spent on caring for NICU babies is reduced naturally, rather than a withdrawing funding for treatment.

    Having said that, it can be very difficult justifying the playing of God almost in terms of keeping alive a 23 weeker that is never going to be strong enough to have any sort of life. But I think the conversation and decision about whether to resuscitate and carry on treating needs to remain on a case by case basis between the doctors and parents. It should never come down to policy. x

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