COMMENSAL ISSUE 104

Note : This discussion took place on SceptiList, an email discussion group on eGroups analogous to PDGList for members of SceptiSIG.

I thought I would share some thoughts from emails I've sent to other people discussing this topic. Have to say I'm surprised at the number of humanists who are falling into the 'preserve life at all costs' mentality so beloved of the religious. And that although for different reasons, I find myself in agreement with senior RC clerics ... or better phrased, they're agreeing with ME.

.... this case has produced some curious alliances among people who would in other circumstances be mortal enemies. Although the same conclusions are being reached for entirely different reasons The question that has not been asked is what would each of the twins say if they were competent to have the facts explained to them and express an opinion. In my view, the only justification for carrying out an operation of this nature is if we could be confident that both parties would agree to it.

As a humanist, I would like to think that in 'Mary's' position I would allow the operation to go ahead so that 'Jodie' could be saved. But what about 'Jodie's' point of view? The medical complications seem to get worse by the day, in contradiction to the initial indications of the doctors. But even assuming these can be overcome, who would wish to live in the knowledge that someone else - let alone a twin - had died as the price of achieving this. Even if such early death was inevitable, that is a massive emotional burden to carry.

I reckon that this is yet another example of doctors wanting human guinea pigs to experiment on with no thought at all for human feelings. Although my initial reaction was to say they should be separated, the more I think about it, the more convinced I am that the parents in this instance are right. Even if they are right for what I believe are the wrong reasons.

.... As for the twin 'Jodie' under discussion .... it seems to have gone without question in the media generally that it's in her best interests for the operation to go ahead. I wonder how many people would choose to live if the price of that was firstly the murder of your twin, followed by your own dismemberment and being partially patched together with bits and pieces from your dead twin. Then years of reconstructive surgery to follow and a life of almost certain disablement at the end. And that's supposed to be in her 'best interests'?

I'd love to know if any of the Court of Appeal judges would volunteer for the treatment themselves, given the choice. It's a terrible shame that the parents have rested their opposition on their religious views and not on the fact that whatever about the rights of the twin who will die in the process, it's a gross violation of the human rights of the twin who's actually going to be the one to endure this procedure.

Jeremy Jenkins

Patrick O'Donohoe (27^th September 2000) : This would seem to me a case where religious views are important, since they have a bearing on the future quality of life. It seems the whole community in Malta is deeply religious and, according to one survey quoted by the (I think) the BBC, about 3/4 of the locals support the parents' view. This means Jodie is likely to grow up in a culture which believes she should be dead.

This is obviously just one factor in a very complex situation. On my limited understanding of the situation I also tend to favour the religious "side", but clearly there is no "right" answer. Of course, grey areas like this make a great playing field for black-and-white-ists of all persuasions.

Patrick O'Donohoe

Theo Todman (3^rd October 2000) : I'd like substantially to agree with Patrick on this one, though I ultimately take a different side on the issue. Religion is an important factor in the case, but only because of the stupidity of some societies.

Ethically speaking, I'm a consequentialist and believe that actions should be undertaken primarily based on their consequences, in so far as these can be foreseen. There's always the "do nothing" option, which some would dress up in pietistic language as "leaving it to God". This is sometimes just a cop-out as, theologically speaking, God has presumably given us talents to use, so refusing to use them when they are useful just because it's too risky is just cowardice. No-one is morally forced to rescue a drowning child (in the way you would be morally forced not to drown a swimming child), it would just be cowardly or selfish not to do so if you were the one in a position so to do.

So, we have to determine whether the "do nothing" option leads to worse consequences that the "do something" option. This is a complicated calculation.

I will take it that the bleak prospect of "do nothing" painted for us is correct - ie. heart failure within a few months leading to the death of both twins. This would seem to be a bad state of affairs. Maybe the process of dying isn't that pleasant, either. Maybe it's possible to keep them both alive by implanting an artificial heart into the other one - but as no-one's volunteered this as a solution, I'll presume it's not on.

If we take positive action, we have a certain downside - the death of one twin. We have a likely up-side : a long and relatively healthy life for the other twin.

As Jeremy noted, there are flies in the ointment - the process of achieving the long and healthy life would probably itself be long and painful. It might also end in failure. In itself, this is not much of a counter-argument - curing any serious disease tends to be long and painful, but people go through this partly because the alternative (death) is less appealing ... but also because they also see at least some life worth living beyond the intervening pain. Small babies can't see anything very much, so decisions have to be made on their behalf by those who can. It is routine to try to save the lives of premature babies, however ill they are.

That Siamese twins can be separated and one survive seems to be proved. There was an example in the paper over the weekend (Saturday Times, 30/9 - p. 3) of a Siamese twin - Victoria Tieaskie - who survived just such a separation and 40 other big operations and is just about to get married, aged 30. And jolly grateful she is to, by all accounts.

I'm not sure how Jeremy knows that the surviving twin wouldn't want to have gone through with the operation. It would only be the case if her parents and others she grew up with filled her head with such nonsense as that her twin had been "murdered". Even if this were true, quite how can she be held responsible when she wasn't party to the decision ? This just strikes me as being a loss of nerve. Just how is two people being dead supposed to be better than one person being dead ? The term "murder" isn't designed for use in such circumstances.

Of course, things might go horribly wrong - both babies might die on the operating table, the surviving one might end up with a horrible life (especially if half-wits fill her head with their own moral confusions). And yes, it would be nice if they could both live happily ever after, but they can't. Even if the situation was entirely symmetrical (though I can't see how it could be the case in this situation) it would still be rational to choose one rather than let both die.

Say two of us are involved in the next Greek sea tragedy and there's only one place on the drift-wood - do we dither around "after you, no, after you, no I couldn't" until we both drown ? Well, that makes no sense - we have to come to a decision procedure as to who lives and who dies, and it's then incumbent on the survivor to make the best of his life and not wallow around in remorse. Come to think of it, wasn't there a film made about this recently ?

Theo Todman

P.S. I suppose I ought to say something about "human rights". These are not natural rights, but are granted by human societies in so far as they can afford them. In this case, we can't "afford" to let both children live - it's just not possible - so it's no use saying they both have a right to life, because no-one can supply that right. However, we can deliver that right to precisely one of them, and it would be a violation of that right not to do so.

Jeremy Jenkins (4^th October 2000) : Thanks for your interesting contribution. I think we're all agreed on the principle of this, the difference lies in how we define 'best' and 'worst' options.

Maybe the prospect of dying is unpleasant, but so is the alternative - at least for Jodie. On the other hand, the operation is actually an easy way out for Mary. I think the case would be marginal if the surviving twin actually could look forward to a 'healthy' life - which current reports do not suggest at all. I would still not be able to justify the operation but it would be a harder call than the scenario we have.

I must say I often wonder about this, admittedly without having any direct personal experience of a life-or-death situation. My outlook has always been that if the medicine is worse than the disease, it's best left untaken. It seems to me that many people do take medicine that's worse than the disease they have, and other than not wishing to leave family behind, I cannot figure out any rational motivation for this. But then maybe it's instinctive for most people to do whatever they can to cling onto life without trying to rationalise precisely why they are doing to.

From what I have read about Christopher Reeve, his motivation for remaining alive has been the hope he will one day walk again. I hope he will, but if so I do have to ask whether he will ultimately be able to say that the sacrifice and difficulties were all worth it, compared to letting nature take its course after he got injured.

My opposition to the procedure is based on the premise that if the death of another person was the price of my continued existence, I would like to think (not knowing what I would actually say if push ever came to shove) that I would say no-way-no-how. Even without the prospect of the problems 'Jodie' will face if the operation goes ahead.

Not in all cases do doctors try to save the lives of very ill premature babies. Although decisions like this are normally taken in consultation with the parents. I'm not opposed to separation of Siamese twins on principle, except where it fails the 'medicine worse than the disease' test. I don't know that the surviving twin wouldn't want to have gone through with the operation. But I'm pretty damn sure I wouldn't want to in the same position.

Whether the expression 'murdered' is used or not, the surviving twin is bound to find out one day that she had a twin from whom she was separated, and her twin instantly died on the operating table. What would you say to her if in 15 or 20 years time she said she was born together with her twin and they should have died together? Even if those around her tell her she is not responsible, she still may hold herself responsible?

In purely logical, utilitarian terms of maximising the number of breathing individuals, you are right when you say that two people being dead is not better than one person being dead. But human beings have emotions too, and what this child and those around her ultimately feel about the operation, and the way they react to it, will not be determined by logic alone. It is very likely to happen that people will fill the surviving twin's head with their own moral confusions.

This case has caused so many humanists to fall into the 'preserve life at all costs' mentality of the so called 'pro-life' movement. In the "lost at sea" situation you depict, Theo, if neither wishes to survive at the expense of the other, then it is entirely reasonable for both to die.

Your statement that it is incumbent on the survivor to make the best of his or her life is precisely why this operation appals me. I have an intense dislike of the notion of having the moral responsibility of living my own life not just for myself, but also for the sake of someone else who 'sacrificed' himself. And it's not what others would think that would be important, it's how I would think of myself.

To speak of a 'right' to something implies that it is something of inherent benefit to an individual. When the 'pro-life' people speak of a right to life they mean nothing of the sort ... as they oppose any right to die, they really mean a 'duty to live' whether you like it or not. These two kids cannot make that choice for themselves, but what we can do is make that choice on the basis of what we would choose for ourselves in a similar position as the best guide available. To impose life on an unwilling recipient is as heinous as to kill someone who does wish to live.

Jeremy Jenkins

Patrick O'Donohoe (4^th October 2000) : when Jeremy spoke of the 'preserve life at all costs' mentality really meaning a 'duty to live', this reminded me of the rather paradoxical news interview I saw a few days ago, with a member of (I think) Life, who was supporting the religious view against the operation (ie allowing both twins to die naturally). Why should a member of a "pro life" organisation support a course of action which will probably result in two deaths rather than one?

It would seem that many people going under the "pro life" tag would be better described as "pro religion", and the case of these twins is proving to be an uncomfortable twist in the tale for them. Perhaps some "pro lifers", if they wish to remain semantically correct, will now have to find a new label for themselves.

Patrick O'Donohoe

Theo Todman (5^th October 2000) : Patrick, my view is that this is a quandary that affects all deontologists. There is no automatic procedure for deciding which of two commands to obey if they conflict. In the Siamese twin case we have an irreconcilable conflict between the (presumed) command to preserve life at all costs and that not to take it. Hence the tail spin and the "do nothing" approach as being allegedly the lesser of two evils. A consequentialist has no such logical problem, though the requirement to think through all the consequences, estimate the probabilities and actually take the decision, in the knowledge that ex post facto it might all turn out badly, does not make this the easy option.

Theo

Theo Todman (5^th October 2000) : Jeremy, you seem to have ignored the counter-example of a Siamese twin having been through precisely this procedure and being happy with the decision and outcome. What someone who has been through the procedure feels carries more weight with me than what someone who hasn't got to go through with it thinks they might feel.

I agree with you about not taking the medicine if it's worse than the disease. Perish the thought that I should end up in a "dread disease" situation, but if I were to, I hope I'd have no intention of messing up my final two years with chemotherapy if the probability of success were low - but this has to do with probabilities and years of expected useful life. Some people do take this "non interventionist" option and it's perfectly rational. However, it's not an exact parallel to the case in hand where there's likelihood of success. In any case, If I were very young, I might take longer odds as the expected gain is greater.

I agree that doctors don't always "save lives at any cost". I agree that sometimes the cost is too great and the odds too slim. That's why, in this case, we give up on Mary and go for it with Jodie.

Christopher Reeve is in no worse a state than Stephen Hawking. Both can (with assistance) do things with their lives. I'm not aware that Stephen, any more than Christopher, is keen for nature to take its course.

What would I say to Jodie if in 15 or 20 years time she said she was born together with her twin and they should have died together? The same as I say to my children when they say they never asked to be born - "stop being so stupid and be grateful".

I didn't say that the survivor should live for the other who was "sacrificed" - but simply be grateful for life and get on with it like anyone else. Any inability to escape false remorse is simply a hang-up to be shaken out of.

"To impose life on an unwilling recipient is as heinous as to kill someone who does wish to live." Really ? Well, firstly, we don't know that Jodie's unwilling. Secondly, killing is rather final, whereas under normal circumstances a person who really doesn't want to live can make their own arrangements in due course to remedy the situation. I agree that keeping someone alive in torment against their express wish is a very bad state of affairs - one effectively forced on people because of the anti-euthanasia laws - but this is not the situation we're in with Jodie.

I agree with your very useful distinction between the "right to life" and the "duty to live", and agree that pro-lifers do incline towards the latter, and that this is wrong. However, in our situation, we are (hypothetically) offering Jodie the opportunity to live - preserving her right to life when it is within our power to grant or withhold it. If, when she comes of age, she wants to end her life, that is her business - but I would try to persuade her out of it, especially if her reasons are the - to me - pathologically irrational ones that you seem to espouse.

Theo

Jeremy Jenkins (5^th October 2000) : Theo, A few more comments in reply. I did read of the other parallel case, but it hasn't affected my view of the current case because:-

• I would need more information as to quite how similar the two medical situations were
• the cultural environment that Jodie will grow up in (unless she's left to live in the UK) will not be helpful
• it's easy for someone to say it was worth it from an 'ex-post' perspective. Would that person say the same from an 'ex-ante' point of view?

The probability of something like a "dread disease" happening to any of us at some point in the decades ahead is decidedly non-trivial, so it's not an entirely academic scenario ...

I wonder if medical staff view "non interventionist" people as being 'rational'. The tendency of doctors to run off seeking court injunctions to force treatment on minors is only one step away from doing the same to adults. Anybody who takes the view that medicine worse than the disease is best left untaken has a reasonable chance of experiencing a fundamental difference of opinion with medical people at some point in their lives. It would be nice to know you're not going to end up at the wrong end of a court case as a result, or worse still, ignored if you are incapable of putting up a fight.

I actually admire both Christopher Reeve and Stephen Hawking for their courage in the face of adversity. The point I was trying to make was that life should be worth living for what it is now, not for what it might be at some point in the future. In the case of Stephen Hawking, I think he would agree that the chance of any recovery or cure for him is minimal at best. As regards Christopher, I hope for his sake that even if any prospect of recovery was excluded, he would feel that his life was worth living for what it is now. Otherwise, I fear he is not doing what's best for himself.

Surely there's a difference between the occasional outburst of angst from the average child, and something like that from a child / teenager in the future Jodie's position? Especially if it's in response to other people telling her how heroic her sister was in 'dying for her.'

Perhaps I'm over-imagining things here, but I could envisage Jodie in future life being torn between a desire to die on the basis that she is not 'whole' because of the death of her twin, and the knowledge that if she did choose to die, she would be imposing an upsetting burden on her parents and other around her. Especially in that she will feel that an enormous effort will have been expended to give her the life she has, imperfect though it is.

I freely admit that my views on this case are not entirely the product of the logical, utilitarian part of my mind. It's something deeper, and I can't put my finger upon precisely what it is. The idea of having my own life preserved at the price of sacrificing another life - even another life that was doomed in any case - is something I cannot philosophically accept, at least for myself.

If two other people could come to an agreement whereby one would die so the other could live then fine by me, but I cannot comfortably countenance imposing such an agreement on someone else.

In our concern to prevent death, do we not realise that once a person is dead, it does not matter to that individual how long or short his life has been? What matters is what he has experienced while he was alive, and the effect he had on others in society.

Bearing this in mind, is preserving life at all costs really worth it?

Jeremy Jenkins

Theo Todman (6^th October 2000) : Jeremy, I think we've come to the end of the line on this one as we've both stated our cases. I would, however, want to take you up on the contention that "once a person is dead, it does not matter to that individual how long or short his life has been". While, in a sense, this is true, the implications of applying the idea are rather scary. It would allow us to take away from someone the expected good of a long and fruitful life because, after their death, they wouldn't know we'd done it.

Theo

For your information, here's the article from The Times (Saturday 30^th September), filched from The Times Web-site (via, at least this week, http://www.the-times.co.uk/news/pages/Saturday-Times/frontpage.html). The pictures weren't on the site - they give a very positive image of Victoria Tieaskie.

September 30^th 2000 United States

The only woman in the world who knows how the Siamese twin Jodie will feel has spoken of her joy at being given the chance of life in a separation operation that killed her sister. Victoria Tieaskie is now 30, married and training to be a children's nurse so that she can share her own fighting spirit with other children defying adversity.

She has survived 40 big surgical operations through her childhood to become a happy, healthy adult who can walk normally and might be able to become a mother.

Mrs Tieaskie was joined to her sister at the pelvic area in almost exactly the same way in which Jodie is now attached to Mary at St Mary's Hospital, Manchester.

When Victoria and her sister were born in 1969, senior doctors at a maternity hospital said that nature should prevail and "it" - the twins - must be allowed to die. A young trainee doctor helped to get the sisters to a team of specialists in another city, who performed the world's seventh operation to separate this kind of conjoined twins.

She is believed to be the oldest survivor of such surgery and has decided to break her long silence to send a message of hope to Jodie and Mary's parents.

"I am very grateful that I was given the chance," Mrs Tieaskie said. "Right now I have scars, but I am not handicapped in any way. I never felt I was saved at my twin's expense. She wouldn't have survived anyway. I know if she was supposed to have lived, she would have. It just wasn't meant to be."

The Maltese parents of Mary and Jodie have given up their court battle to stop the separation and are awaiting the surgery, which will kill Mary, in the next two months.

Victoria's mother, who was only 18, had no idea she was expecting twins when her daughters were born at the St John Medical Centre in Tulsa, Oklahoma, on December 22, 1969.

"The doctor didn't know what to call us because he had never seen anything like that before," Mrs Tieaskie said. "He never called us babies. He never called us girls."

The children were left to die, but a 28-year-old student doctor, David Sward, saw them and became curious. He checked the hospital library and found an article by an expert on Siamese twins who worked in Oklahoma City, only 100 miles away.

Dr Sward, now working in Arkansas, recalled: "What I did was, first of all, probably not ethical and, perhaps, illegal." With a couple of doctors from another hospital, he secretly did X-rays and tests on the twins, without getting permission from the obstetricians or paediatricians. "We were giving this kid sugar water and a little nourishment and penicillin to keep it from getting infected long enough until something could be done."

Dr Sward persuaded the nurses in the Tulsa hospital to arrange a transfer to the Children's Hospital in Oklahoma City. The twins were just two days old.

Like Mary, Victoria's twin, Veronica, had a malformed head and never breathed. She could live only while attached to her sister.

The doctors in Oklahoma City wanted to wait two months to separate the girls, but after two weeks Victoria suffered a heart attack from the strain of keeping her sister alive. The operation was performed as an emergency. Mrs Tieaskie said: "She was breathing off me. After they separated us, she immediately died."

Twice, when she was three months and 16 months old, surgeons broke her badly bowed legs to straighten them. She had to be put into a whole-body brace to prevent her moving her legs. She wore special shoes for clubbed feet until corrective surgery cured them. Victoria had few problems at school: "There was a little bit of teasing because I had to wear diapers for so long. As time went on, my body learnt to adapt.

"Right now I have two bladders because I still have hers. I'm flat-footed but that's OK. I have never had any psychological problem. I think it has made me tougher."

Mrs Tieaskie, a dialysis worker in Oklahoma City, has the chance of becoming a mother using her sister-in-law as a surrogate. She produces eggs, although she would be unable to carry a child herself.

She is passionate that Jodie should be separated from Mary. "It is not murder. It's saving a child who has fought this long to survive."

Victoria's mother, Debbie Purinton, said: "After she was born, they took her right away and told me 'it' - I think they called her 'it' - would be dead by the morning. They put her in a corner, without any fluid, to die."

Victoria's father, who was also extremely young, found the pressure intolerable. Mrs Purinton, whose husband adopted Victoria, said: "Her biological father left when she was five and signed away parental rights. He had difficulty coping. We just dealt with it.

"To look at her from the outside, you wouldn't know she had this going on. She is a roadmap of scars. Most are round the hip and stomach and back. Her biggest complaint is she doesn't have a belly button. It went with the other baby.

"It really wasn't ever thought that we were sacrificing one to save the other because there was never any chance of her twin living anyway. You can't really think of it in terms of sacrificing one for the other. If not, you are sacrificing both. You are not even giving one the option."

Jeremy Jenkins (6^th October 2000) : Yes, I think there's little chance of either of us convincing the other. However, I think we are both trying to approach the case from a humanitarian perspective, albeit with different conclusions.

I agree with you about the implications of this (not being over-concerned about the length of life) being a little scary, nevertheless I believe it to be true. Which is why, if I knew I only had a short time to live, I would like to think I would not fret too much about things that had gone wrong in life, as the capacity to regret would come to an end as soon as life ends.

Of course, from a religious point of view, it's even more scary. After all, if the result of being killed is not simply a cessation of existence, but a 'better' existence in a superior afterlife, surely the logical way to treat a mass-murderer would be to give him a medal, not a prison sentence!!

Jeremy Jenkins (8^th October 2000) : An interesting ethical variant on the Siamese twin case ... Jodie and Mary are two new-born (non-identical) twin girls. Instead of being conjoined, they are born separated. Jodie is a healthy child, however Mary's kidneys have both failed. Jodie is a tissue match for Mary - should one of her kidneys be taken and implanted into her sister?

Suppose the parents say that it is not 'God's Will' for this to be done, and they want Mary to be allowed to die naturally. They refuse to allow transplantation from Jodie into Mary.

Are the parents being reasonable or not? Should the doctors take them to court or not?

Jeremy Jenkins

Theo Todman (8^th October 2000) : Interesting. My first temptation was to say "yes" to all these questions, but you might then widen the argument to include unrelated babies - why don't we raid any unwilling (or unaware) victim to help others ? I expect there would be alternative forms of treatment to hold the fort until either a willing donor comes on the scene or we get the hang of kidney-cultures, so, on this basis, I say "no".

This isn't really parallel to the case in hand, where both twins surviving for long isn't an option. What's happening, in any case ?

Theo

Jeremy Jenkins (9^th October 2000) : The reason I put together this variant is because in this case one twin could be saved, but not at zero cost. But it's a price the other twin might well be willing to pay, if she was able to make up her own mind. But even assuming that her twin would die if the operation was not undertaken, I would still be very nervous about overruling the parents (but unlike on the separation case, I would at least be open to persuasion).

As Theo says, the problem that arises as soon as you say 'yes' in any case like this is that an incrementally different scenario comes along, and you are back to square one. There have been cases of bone marrow being taken from infants for transplantation - now this is different to kidney transplantation in that the effects on the donor are much less, and arguably for the recipient the treatment may fall into 'medicine worse than disease' category - but there has been a recent case where a baby was born specifically to be a bone marrow donor. hmmmmmm.

Being a humanist means that there can be no such thing as the moral equivalent of a knee-jerk reflex. Each scenario needs to be assessed on its own merits.

Last I heard on the Mary & Jodie case was from the Sunday Times, 1.10.2000 which suggested the Manchester doctors may be getting cold feet about doing the operation. http://www.sunday-times.co.uk/news/pages/sti/2000/10/01/stinwenws01031.html (extract below)

Jeremy Jenkins