Wednesday, March 09, 2011

'The Price Of Life'

If anyone has a stomach strong enough, they can review the film-maker Adam Wishart's documentary - surprisingly for a documentary, one in which the documentarist provided an insight into their own views; when Leni Riefenstahl did that, she was called a propagandist - on the desirability of providing care to children born at 23 weeks' gestation here. Make sure you're doing so with a packet of Alka-Seltzer to hand, and that the only things you throw at the screen are soft.
A few quick insights into this show, in no particular order.
Many of the neonatal medics interviewed indicated that 'if they were in that position', they wouldn't want their child to be resuscitated. None of them indicated that they ever had been in that position. The doctor parents of Molly, a 23-week survivor and now a happy 11-year old, described the medical withdrawal of care from viable children as euthanasia. I'm with Molly's mum and dad on this one.
Wishart travelled to the Netherlands, and interviewed the president of the neonatal medics' association. Now, I know that medics read this blog, so I am going to choose my words very carefully. However, I have spent a great deal of time attending doctors' appointments over the past 20 years, and have formed the view that any doctor who forms a view of a particular condition, or set of individual circumstances, is a megalomaniac. For that doctor, maintaining the view becomes more important than treating the patient; the patient must fit the view, rather than accepting the view having to adapt to the patient.
Unless I am greatly mistaken, the president of the Dutch neonatal medics' association was of the view that children born at 23 weeks' gestation should not be resuscitated, or indeed given any treatment of any kind, but given 'compassionate and loving care' during the course of the very short lives they were able to lead as a result of not being treated. I may be being unfair to the gentleman, and then again I may be being totally fair, but while expounding these views he had a smile on his face which could best be described as ghoulish; a not unsuitable adjective, given the nature of what he was saying.
Back to Blighty, and Wishart haunting the halls of the Birmingham Womens' Hospital neonatal intensive care unit. That particular unit seems to have one of the highest incidences of premature births in the country. There was a great big elephant in the room during the course of the documentary, which Wishart didn't see fit to address, perhaps because it's no relevance; but given the higher than usual rate of genetic illnesses generated by cousin marriages among ethnic South Asians, and what I understand is Birmingham's possession of an ethnic South Asian population higher than the national average, it would be interesting to know whether the practice of cousin marriage increases the likelihood of prematurity, as conception via IVF may or may not increase the likelihood of prematurity. The very title of Wishart's film was 'The Price of Life'. If it does not investigate all possible reasons why the UK's prematurity rate is so high, no matter how personally unpalatable he might find the conclusions, then his film runs the risk of being branded disingenuous.
However, several of the interviewees did mention that prematurity is linked to poverty. Not in our case, certainly, nor presumably in the case of the two police officers whose 23-week prem daughter Matilda was listed as the 1 in 100 survivor whose care Wishart rather tediously described as having cost over £100,000 for her five month stay (a large sum, for sure, but still less than the Birmingham Womens' Hospital paid H Gee, its Medical Director, in the 2007-2008 financial year (page 15)(.pdf), nor in that of Molly's two doctor parents. Certainly, from our proximity to neonatal care, there were other middle-class parents whose children were going through the same ordeal as our own, but there were probably more poor parents than middle-class. If prematurity is linked to poverty, then it isn't really linked to poverty but inequality - precisely the sort of conclusion that Richard Wilkinson and Kate Pickett might have reached in 'The Spirit Level'. Indeed they may have done so, but I don't think they did; if they had, I think I'd have remembered it.
So, the best way we can reduce the number of premature births is to reduce inequality. Of course, the guiding spirit of British economic policy is not the reduction of inequality, but its enhancement and entrenchment (Iain Duncan Smith's latest wheeze is to incentivise those on low wages to save for their retirement rather than depend on the state pension, an insulting suggestion which immediately makes one think that the easiest way for them to do so would be to receive higher wages). Consider this - in the UK, the majority of premature births at 23 weeks' gestation occur in families living in poverty. The government will not take any steps to alleviate their poverty by reducing inequality. A kite starts being flown, and a kite is all that this exercise is, saying that babies born at 23 weeks' gestation should not be resuscitated; in extremis, not even given treatment.
Now I might be too close to this, my brain too overheated by, you know, experience, but doesn't suggesting that the children of the poorest families be euthanised, or, as the Dutch translation goes, receive 'compassionate and loving care', sound very like the genocide of the poor? It sounds very much like it to me. Poor people in less equal societies are less healthy, and die more quickly, than poor people in more equal societies. Euthanising the children of the poor would seem to be a very efficient way of resolving the problem of having to fund future healthcare for the poor at source.
An admirable aspect of this documentary was that it focussed on how very premature children, many with multiple, lifelong health problems, are cut loose by the NHS when they're 18. Now, the redoubtable Dr. Daphne Austin, Consultant in Public Health, and of immortal memory, was very quick off the mark to say how she thought that 23-week births represented a lot of investment for very little marginal benefit. It would have been very interesting to see Wishart screw her to the wall, so to speak, and find out how much funding she had secured for adults in that position over the course of her tenure. That scraping sound you might be hearing could just be the shuffling of no doubt very sensible shoes.
However, where Wishart exposed his own mettle was in his expression of this view that decisions regarding the care of very premature children should be transferred from what he termed 'stricken parents' to their doctors - going Dutch, so to speak. My own experience, one that as far as I could see was shared by the parents he interviewed, was that neither my wife nor I considered ourselves to be stricken; we were too bothered about our son to be bothered about ourselves, a phenomenon that can be seen across society - although the poor have more premature babies, and thus cost the British state an inordinate amount of money, they also love their children. After hearing Wishart's opinion, I could only think of Nesta Webster's description of the view of family life held by the loathesome Louis St. Just -
"(A)ccording to St. Just, every department of life must be placed under State control—perhaps the most inexorable form of tyranny it is possible to conceive. For to an individual autocrat some appeal may be made, but against the doors of a system one may batter in vain. Thus in St. Just’s Republic every human relationship was to be regulated by the State. True, free love was to take the place of marriage, but the union thus contracted was to be dissolved at the end of seven years if no children were forthcoming, whether the contracting parties desired to separate or not. Parents were to be forbidden either to strike or to caress their children, and the children were to be dressed all alike in cotton, to live on “roots, vegetables, fruit, with bread and water,” and to sleep on mats upon the floor. Boys were to belong to their parents only till the age of five ; after that they were to become the property of the State until their death. Every one was to be forced by law to form friendships, and “ to declare publicly once a year in the Temple who were his friends.” Any infraction of these laws was to be punished by banishment."
Mr. Wishart might baulk, even hotly dispute, any comparison betwen himself and the man described as having 'a mind on fire and a heart of ice', but this is one of those times in life when you have to say it as you see it. Doctors should not have the power to determine the course of a premature child's treatment, or lack thereof, for the same reason that in our society we don't allow the generals to determine military policy. If they were allowed that privilege, it would breed firstly pride, then its bedfellow megalomania. If you don't think that would happen, I would be more than willing to debate my impressions of the president of the Dutch neonatal medics' association with you. It would be a sundering of a parent's responsibility for their child, almost an assumption of ownership by the state, beyond St. Just's wildest, and sickest, dreams. No doubt Mr. Wishart might dispute that analysis, but having been on the business end of parental involvement in neonatal care, I'm more than willing to go toe-to-toe to defend it.
Nothing I saw in this show shakes my view of my earlier analysis. Opening a debate on the care of very premature babies, as in whether they should be cared for at all, is a slippery slope. While official euthanasia would be unlikely ever to become law, the same policy could be introduced through the back door by unofficial, nod-and-a-wink euthanasia, not benign neglect but malign neglect. It would lead to the gradual upward defining of the concept of 'very premature babies' from babies born at the very edge of natural survivability to eventually include babies who really just need a hug, a warm cot, and a hell of a lot of calories. The purpose of this would be to ration the availability of healthcare to them at other points in their life, an exercise in cradle to grave triage in which the prem would always get the short end of the stick. Any such exercise in determining whether very premature babies should be cared for would not address all possible causes of this phenomenon, such as the UK's unacceptably high degree of inequality, medical factors such as any possible correlation between conception by IVF and prematurity, or cultural factors, such as cousin marriages. To address these issues would be politically unacceptable, but if they were not included within any such debate's terms of reference it would be incomplete, and thus of no value.
All in all, it conjured as many unpleasant spectres as unhappy memories. I do wish these guys would pick on people their own size.

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Blogger Martin Meenagh said...

I think so too Martin. Thank you for that post.

10 March, 2011 12:37  
Blogger Martin said...

You're very welcome, companero.

And I hope all's well woth you and yours.

10 March, 2011 23:59  
Blogger Julie said...

If you've the time, have a read of Chesterton's 'Eugenics and Other Evils' here;

This was in response to attempts to bring in compulsory sterilisation of the mentally ill, a wee episode that Britain's chattering classes like to forget. The more things change..

14 March, 2011 01:02  
Blogger Paulinus said...

Thank you for a great analysis, Martin.

it would be interesting to know whether the practice of cousin marriage increases the likelihood of prematurity, as conception via IVF may or may not increase the likelihood of prematurity.

Right on both counts. Which is why you need the permission of the bishop to marry your first cousin in a Catholic Church. It is there to discourage such a practice. For obvious reasons.

Matilda was listed as the 1 in 100 survivor whose care Wishart rather tediously described as having cost over £100,000 for her five month stay

We should ask the question: how was that calculated? UK citizens are not charged for their care in NHS hospitals. What is the purpose of the calculation. I think we can guess.

23-week births represented a lot of investment for very little marginal benefit

How dare she? I consider her salary a lot of investment for very little marginal benefit if that’s the keech she comes out with.

Wishart exposed his own mettle was in his expression of this view that decisions regarding the care of very premature children should be transferred from what he termed 'stricken parents' to their doctors

Oh yes, doctors (and I speak as one). A group with higher than average rates of divorce, suicide, alcoholism and drug abuse than the population at large. The perfect moral arbiters, no?

I do wish these guys would pick on people their own size.

Quite. But they won’t. The dying poor, the inconveniently incurable and the too-expensive-to- care-for are fair game. Bullies and thugs always go for the weak.

Martin, thank you for watching this for me. It has saved me a waste of valuable time. God protect us from my profession.

14 March, 2011 16:24  
Blogger Martin said...

Julie, Paulinus, thank you both for your comments. Julie, an infant tummy bug (aarrghh!!) stands between me and that Chesteron piece. I will read it and post on it.

Paulinus, as you might imagine I was very interested in hearing your views, and am not very surprised to note the correlation between prematurity and IVF conception; perhaps perversely, this might be a factor weighing against the euthanisation of the very premature. My own view is that IVF is now such a sacred cow that it must not merely be a success, it must be seen to be a success, at all times and under all circumstances. Somebody even got a Nobel Prize for it. If the nature of the IVF process used at one stage of pregnancy is such that it causes complications in another, then it would be impossible for the doctors involved to advocate withdrawal of treatment if the IVF-conceived were subsequently born very premature. With sauce for the goose being sauce for the gander, it would be politically, and I assume also ethically, impossible for a decision to be made to treat IVF-conceived babies born at 23 weeks, while not treating naturally conceived prems born at the same stage of gestation.

Sorry to blether so, but this is what really gets under my skin about this. The metronomic monotony of the arguments used to advance this monstrous suggestion inevitably leads to the upward definition of extreme prematurity by age, and the use of prematurity to dictate one's place in line when healthcare is being rationed in later life.

14 March, 2011 23:09  

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