Tuesday, August 07, 2007

Life is precious but ....

In my professional life I worked with families who had children with special needs. My specialism was deafness but, since the control of rubella, there are few babies who are just deaf; deafness now comes within a range of complex needs. New technology makes it possible to diagnose deafness at birth, so this is often the first of the special needs that can be addressed, consequently the Teacher of the Deaf is often the first professional to be appointed to work with the family.

Over the years I have seen more babies survive with conditions that would have defied medical intervention even a decade ago. Modern medicine is amazing but is it always right to use it? I have just had a pertinent reminder of the consequences of saving severely damaged babies. My doorbell rang and I opened the door to a delivery man who called me by my first name, it took a little while for me to realise that he was the father of one of the first babies I worked with when I moved to this area. He seemed desperate to pour out his story. Here it is, I'll just change the names:

Sam and Mary were a handsome, bright young couple with a smart new house and car and lots of ambitions. Mary had given birth prematurely to twin boys, each weighing less than 3lbs. Both babies were on life support and both suffered cerebral bleeds; John died, James kept a tenuous hold on life but the parents were advised that he would have severe difficulties and that no further medical interventions should be made. For several months the young couple made the daily 130 mile round trip to the hospital to sit by the incubator and to argue with the doctors who wanted to turn off the life-support. Eventually James started to breathe by himself and they were allowed to take him home. I became involved at that point, remaining as their key worker for the next 5 years.

James underwent many life-saving procedures in the first three years of his life. Each time he came home a little more damaged, his hearing and vision were severely impaired, his cognitive ability deteriorated with each brain haemhorage and his mobility was restricted. Sam gave up promotion opportunities to spend more time helping at home and Mary became a shadow of the vibrant, pretty girl I first met. I admit that I used to hope that James would die so that they could mourn him and get on with their lives.

Sam and Mary continued their battle against the medical and then educational authorities to get what they considered to be the best provision for James and my direct involvement ended when he was given a place at the most prestigious school for children with little or no sight. Not only did they get the authorities to fund a place, they won the right for him to be taken daily by taxi rather than board. James has grown physically over the years but there has been little noticeable progress in any area of development but, believe me, no-one would deny this family anything!

This morning, Sam was eager to tell me that they have just won another battle. James reached his 18th birthday in May. Officially he should have left school at the end of term but what was he to do then? Sam told me they took on every agency again and won james the right to stay on at the specialist school until he is 22 years old. He will have to demonstrate that he is making progress in life skills which, I suspect, will be very different from the independent-living skills the other young people will be acquiring. James can't feed or dress himself so he won't be learning to shop and cook and run a home. His parents have made one concession - he will be boarding for half of the week.

Sam, who abandoned his ambitions and settled for being a delivery man, told me how, during James' first residential period last month, he and Mary had gone on holiday for the first time since their honeymoon twenty-one years ago. He was so proud and happy telling me this. He said they planned to have three more holidays during the time James is in the special unit. Then, with no place but home for James to live, he will give up his job to share the fulltime care with Mary.

This is a long story, deliberately so. Taking on a severely handicapped baby is a long story and many lives are affected. No-one would take away James' right to life now but, by intervening with superhuman efforts in those early days, Sam and Mary's right to any kind of normal life was taken away.

Just because we can doesn't mean we should.


  1. This is a genuinely hard question and one on which people can disagree quite vociferously, so I'm not surprised that no one has commented. I'm willing to go first.

    1. The human race's history with making these decisions, either scientifically or compassionately, is not such as to induce trust. For that reason, among others, I think that general rules should always favor life.

    2. Sam and Mary don't seem discontented from your telling of their story. Nothing was "taken" from them; instead, they chose to keep their son alive and to keep him home. Sam comes across in your story as proud and happy.

    3. What Sam and Mary have done is brave. I don't know if I could be that brave but I couldn't feel right about taking the opportunity from them.

    4. If Sam and Mary had been rich, this wouldn't even be a question. To some degree, the point of the welfare state and National Health, in particular, is to give everyone the same choices the choices available to the rich.

    5. Finally, it is trivial to tell a story about Sam and Mary in which they are freed of their burden, but end up less content. We see those couples around us constantly.

  2. David, thank you for your comment. I know this is a difficult and potentially contentious issue but one that an increasing number of parents have to face with advances in medical science. I think we should look at the implications for individual families and for society.

    1. I believe in the sanctity of life and agree with you that general rules should favour life. Is it possible, though, for medical ethics and the law to distinguish between procedures which end life and interventions which prevent death? I know it isn't as simple as that but I would like people to recognise the difference and to see that sometimes inaction is the most compassionate action.

    2/3.Sam and Mary are an exceptional couple; many marriages and families are unable to survive the demands of constant care for a child with complex special needs. I didn't recognise Sam on my doorstep because he looked like a careworn elderly man, not a 41 year old. Their life has been tough and it can only get tougher as James gets older and the support systems are withdrawn.

    4. If only there were sufficient resources made available to provide first rate care and to allow parents to have times of respite. Unfortunately, these are the most vulnerable services when budget cuts have to be made. 'Why should my taxes pay for your child?' is the prevalent attitude in our self-centred society. I get the impression from recent events in US that the milk of human kindness is limited there, too. But that is a different issue from the one I was trying to address in my post.

    I would like to see an end to 'miracle baby' stories in the press. Those who work with them feel sad, not elated when called in to another 24 week baby that has been saved. We know what lies ahead for the family. The human interest story of the baby smaller than a man's hand, with clothes borrowed from a doll doesn't go on to follow the family through hundreds of hospital visits and all that is involved in the care of the child. They don't show the 'cute' baby as a severely disabled adult who may never recognise or communicate with the parents who have spent their lives in devoted care.

    I am talking of the extreme cases such as James. His parents couldn't make an informed choice about his care, their natural reaction was to fight for his survival, not to look ahead to the quality of life he would have. Would it not be better to help parents in these awful circumstances to prepare to let their baby go rather than to pursue ever more ingenious ways of defying nature?

  3. That not everything that can be done should be done is one of the basic rules of conservatism, so I'm open to that argument. On the other hand, arguments about "quality of life" push a big red button for me. I think I'll push the snooze button, though, and see if anyone else wants to comment. I suspect that the ghost of Terry Schiavo is haunting this thread and scaring off the usual suspects.

  4. If you don't like ferocious arguments, this is the worst possible topic to pick.

    It always gets ugly.

  5. Thanks, David. I hope anyone reading this can see that the issue I'm addressing is very different from the headline case you mention.

  6. Hi Brit, I don't mind ferocious argument so long as it is directed at the views and not against the person holding them.

  7. Yes, but unfortunately on both sides this debate always turns into: "If you disagree with me you must be morally depraved."

  8. Actually Brit, that's the conclusion I come to about you when we argue about Canada.

    I think any decent person understands there are places where general moral and legal strictures loose their abilty to guide us authoritatively and even conflict with what we see as our humanity. The problem, though, is that many modern folks point to these dramatic, ambiguous examples and use them to argue it should all be a matter of personal choice and individual freedom. When you challenge them on whether that will result in many more (and more selfish) "deaths of convenience", they generally ultimately rely on some putative biological imperative or genetic affinity to claim that won't happen, at least the non-religious do. It is pretty clear to me the evidence is to the contrary.

    Really, though, in a sense we are paying for demonizing hypocrisy and insisting on public, rational universal solutions to these issues. Hypocrisy allowed us to uphold baseline moral principles while shutting our eyes to the grey areas. Don't ask, don't tell. Think of the knowing nod between doctors and family, etc. It wasn't perfect by any means and I'm aware of all the needless guilt and shame, etc., but it provide some semblance of a solution that escapes us today. For example, I'm not very friendly to abortion, but the hard truth is that I am far more offended by articles in the NYT by women recounting how liberating their abortions were than by the vague knowledge that abortions are occurring in my community in circumstances of which I am unaware.

  9. I'm thinking specifically of those cases of extremely premature birth where life could not be sustained without really advanced technical and medical intervention. The result is almost inevitably a baby with complex special needs.

    Those who frame policies and laws don't like anecdotal evidence but real people live with the consequences of what Peter describes as "public, rational universal solutions" to those areas which were perhaps better left grey. (Are we back to the wisdom of uncertainty here?) Being a member of a medical ethics committee must be one of the worst jobs in the world.

  10. Leaving aside issues of the sanctity of life or the possibility of achieving a "universal rational solution", Monix asks:

    Would it not be better to help parents in these awful circumstances to prepare to let their baby go rather than to pursue ever more ingenious ways of defying nature?

    I think that in these specific circumstances then the answer is yes: as a moral principle and as a more loving action than the alternative.

    David's point that "Sam and Mary don't seem discontented" may be true, but it's true because Sam and Mary inevitably had a deep love for their child after his initial survival. That's natural; no parent would do otherwise.

    But an objective outsider could claim that helping them to prepare for the death, and enabling them to come to terms with losing someone they love, would ultimately lead to their lives being better and to the conception of a child that would have a more fulfilling and productive life.

    Whenever I hear parents say about their severely disabled child “We love Thomas, and we wouldn’t have him any other way”, I am always bowled over by how intense their love must be – but I also think that what they say sounds bizarre and to some degree selfish.

    Knowing that parents have reacted in one way – “we want to preserve our child at all costs” – doesn’t give that reaction an ultimate moral superiority over other concerns, like (yes) quality of either their or their children’s lives, or the needs of society as a whole.

  11. Well, sure, leaving aside that whole sanctity of life thing.

    You know, I've noticed that old people really don't add much to society. In fact, they use up more resources than they create, they cost the government more than they contribute, they sit on resources that their children could use, and the children are the future. On the other hand, they seem happy enough, if a little crotchety at times, and I'd never suggest that we just go ahead and kill them, even leaving aside, as you say, that whole sanctity of life thing.

    But the last six months of life tends to be really unpleasant. Dying old people are miserable, they're bed ridden, their loved ones lose time from work and end up emotionally drained and the dying just suck up resources that could be much better used elsewhere even though all we're accomplishing is to temporarily postpone the inevitable. I wouldn't want to live that way.

    So, obviously we'd all be better off if we just put old people to "sleep" at the first sign of trouble.

    If only we could put aside the sanctity of life.

  12. David, I don't think that the very specific circumstances that I refer to would put aside the principle of the sanctity of life.

    Since my last round of cancer treatments I have an agreement with the hospital that they will not carry out any procedures other than pain relief should it recur. That isn't the same as saying they can give me a lethal injection.

  13. Monix: Sorry if I hit a sore spot. I was replying to Martpol's comment and was -- contra Brit -- trying to do so in good humor. My point was that, in this circumstance, starting off by leaving aside issues of the sanctity of life is to say, in effect, "ignoring your entire argument, I win."

    I do understand the difference between not aggressively treating and affirmatively killing, and within fairly wide bounds I think these decisions should be left to the family. Sam and Mary made their decision and seem content with it. Second guessing and even countermanding that decision strikes me as problematical and even, if taken to extremes, destructive of democracy and civil society itself.

    If we can countermand Sam and Mary's decision in so personal a matter because (we think) they don't really know what they're doing, why should we allow people to vote when they are so obviously ignorant that they disagree with us? Why should we allow people to marry willy-nilly when they so often make a hash of it? Soon, there would be no personal sphere at all -- which is, by the way, exactly where the welfare state is taking us. He who pays the piper calls the tune and now we see arguments that, because we're footing the bill for, let's say, health care, we get to forbid people from smoking or force them to wear motorcycle helmets or deny them the medical treatment they want for their children. Pretty soon NHS is going to have to ration health care (explicitly, that is, rather than implicitly as it does now) and whether someone is "productive" is going to be part of the mix.

    But, still, the decline and fall of the West is no reason to lose my good humor.

  14. There are at least three moral flashpoints in this maze of a debate: life vs choice, the obligations or otherwise of modern medicine, and the question: who gets to decide?

    We're all reasonable people who appreciate that these are dilemmas without easy answers, and universal formulas are to be avoided. However, somewhere behind that lurk such chilling phrases as "an objective outsider" and "the needs of society as a whole."

  15. Monix:

    I'm with David, of course. You wrote:

    Would it not be better to help parents in these awful circumstances to prepare to let their baby go rather than to pursue ever more ingenious ways of defying nature?

    To which I would answer: It depends who you mean. Do you mean a loving family, the longstanding family doctor, dear committed friends or a familiar spiritual adviser? If so, possibly yes. But if you mean the New York Times, the local Crown Prosecutor, the Ministry of Health or the ethics committee of the local public hospital (complete with union and community liaison representatives), I'd vote no.

    But not without a lot of angst. Rapid advances in medicine are throwing more and more of these poignant dilemmas at us at all stages of life, and it is only going to get worse. I do not know what the answer is, but as your post eloquently demonstrates, we are terribly blinkered in automatically celebrating all these advances as boons and cheering: "More, more...".


    Just saw your comment. If you want to collect chilling phrases, how about "a life not worth living."

  16. David, (I came back to my desk hoping to remove that personal anecdote before anyone saw it, it isn't a sore spot for me, just a fact.) I don't think that I was advocating any change in existing laws or in people's decisions being countermanded. I know what a slippery slope that would be and I agree with everyhing you said. There's still a but ... I, and most of the people I've worked with, just wonder how far medical science should be allowed to go.

  17. Monix: As I say, I do think that these are genuinely hard questions and, as the saying goes, hard questions make bad law.

    My real hope is that, if we delay long enough, we're going to be saved by a deus ex machina. It might be that our ability to save has only temporarily outpaced our ability to repair. In fact, the history of preemie medicine has been that we first save babies we can't help and then we learn to help them. That does imply that we should continue with the heroic measures in order to learn more and keep motivated.

  18. Peter, Brit and Martpol:
    I can't get the hang of how these comments seem to make random appearances! Perhaps we all press the 'publish' button at once?

    Thanks for all your comments. It is a venture into the moral maze, Brit but, if people like us don't talk about these issues the decisions are left to all those objective outsiders that Peter mentioned. We haven't come up with any solutions but I feel better for having shared opinions with reasonable people.

  19. David:

    In fact, the history of preemie medicine has been that we first save babies we can't help and then we learn to help them.

    Wow, talk the dilemma of the social conservaive!


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