Currently in Manchester, England: Two babies born August 8 conjoined by a circular pelvis. Mary has a heart that doesn't pump, lungs that don't work and very questionable mental faculties. She can suck, kick weakly and open one eye but "may not have consciousness". Her bodymate Jodie is "bright, alert. sparkling and a very much with-it sort of baby. Surgeons could technically detach Mary to save Jodie, but obviously Mary would die quickly. But she will die in time anyway as Jodie's reserve eventually dwindles.
The parents wishes are to allow both infants to die rather than separate them. They told the court: "We could not possibly agree to any surgery that ...........will kill one of our daughters. We have faith in God and we are quite happy for God's will to decide the outcome". (Apparently) under English law however, the parents do not have the last word. The physicians went to court to get custody and operate and this was awarded on August 25 by a Justice. The legal reasoning was "Mary's harsh life would only worsen as low levels of oxygen in her blood further destroyed her brain and that stopping delivery of Jodie's blood wouldn't be a positive act of killing but a passive byproduct of saving Jodie" Like withdrawing food and water from a terminally ill patient- which is legal in Britain. Naturally, everyone appealed and the case is under review by jet more Justices.
At a hearing last week, one Justice wondered whether Mary could be viewed as a kind of parasite aggressor, sapping Jodie's lifeblood to the point of killing her and thus entitling Jodie to self defense. However, the most recent flavor of the justice system is that the proposed action of the physicians may be illegal, possibly amounting to criminal assault and /or manslaughter because it would violate the fundamental prohibition against the taking of a life, even to save another. Saving Jodie by murdering Mary.
"Ethics experts are disturbed by how quickly the lower court disregarded the parents". "Both outcomes are right and both are wrong......that's why it seems right to give the parents more say in the issue".
Should Jodie be saved at the expense of Mary?
Jeff Whitnack:
Interesting to speed the clock both up and back. 150 years ago the technology wouldn't be around such that this would be much of an issue. The twins would simply live or die, together. Had they lived in poverty their lot would have been rather dismal indeed. Circus, circus. Now imagine that one twin is saved at the cost of the other's life, even if only to have sped up her demise by a week or so. Fast forward 17 years and imagine the potential family psychological dynamics as one teenager confronts both her own guilt and her parents, parents whom were only by force of court order allowed to have her live as their daughter.
Dick Burrows:
An old chestnut which comes back to haunt everyone and which represents the impossible choice between individuals. The doctors "act God" either way. More pragmatically Legal Man is forced into making a sociomedical/ethical/legal/moral choice in the face principles that are impossible to uphold. By all accounts it is losing him some serious sleep.
I don't like the "acting god" expression as I feel it is simply part of the human condition to have to make decisions some of which will affect others in a variety of ways some good some bad. Having been in a similar situation myself and having been "judged" both ways by many people on this list I am not about to judge this situation. Everybody in the situation is going through their own hell and while I might disagree with the final outcome, whatever that might be, I see nothing to be gained by apportioning blame thereafter or dictating how they will or should act.
As far as I am aware, David, the courts always have the last word - even in the US of A. Whether this word is to lend support to the parents or the doctors is the reason why they go to court. It may be felt apriori that the decision will inevitably go with the parents in which case the courts might not be involved. However the court will always arrogate to itself the right to have the last word. If the court is not happy with the outcome it may well take the issue into its own hands even after the event if it is not happy with the outcome. Courts may hand down decisions which lead the way forward for the future but that does not mean that a case might not occur in the future which will lead to that decision being overturned. Sensational cases do not lend themselves to good legislation.
In this instance there can be no right or wrong way - just a decision as to how to proceed hopefully to the agreement of all but I doubt that.
David Crippen:
Ethicists can debate this academically but it's my job to fix this problem. And I might add that I continue to be less than impressed with ethicist's concern for family autonomy. I see families routinely perpetrating atrocities on their purported loved ones in ICUs that would embarrass the Marquis de Sade. And the reality is that well intentioned parental wishes are not going to be what happens. They are free to wish what they like but we must deal with the REAL aftermath, not the ideal. They have two choices and two only.....one child die or both die. One child die that cannot possible survive on it's own anyway or the other who can. It isn't even a tough choice once it's accepted that it's the only choice that will preserve an innocent at the false expense of another that has no potential for survival anyway. They should NOT be allowed to pipe dream in a real world. That is what court ordered custody was designed for.
Consider this:
It is an early AM at the Left Lower Transylvania Urgent Care Center. A distraught mother arrives with a small child sporting a diminutive vampire firmly affixed to it's neck, sucking gleefully away. The vampoid is getting fatter and pinker and the kid looks like an albino prune. I say to the vampoid....."Hey you......leggo that kid". The vamp looks up and hisses" mind your own business, dipshit". So I grab an acetylene torch and apply the flame to the vampoids posterior.
But "wait" sez the mom.........."You can't do that....it's almost daybreak and this poor little creature will surely die if you pry him loose before he finishes feeding. He has no functioning heart or lungs. And look..the sun is coming up.........he must get back to his little coffinoid soon. No....I have decided. It is better to take a chance that my kid might survive after a blood meal in order to insure this poor little creature who can't help what he is has a chance at survival too. We will let God decide.
Right. I don't see any ethical problem here at all. I would think about this case about 5/8 of a second, call for a court order and then order up an operating room.
Ten units of type O please........break out fifty packs of proline and follow me........
Dick Burrows:
Comparisons are odious and as well as that it was Heraclitus who said "all is flux" so while one set of circumstances may fundamentally and philosophically be the same as another they still require different solutions. Fundamentally when you withdraw treatment the patient dies just as if he is murdered. The commandment says "Thou shalt not kill" it doesn't refer to intent or mechanism. Clearly we don't hang doctors who withdraw treatment.
I presume the parents have made a decision based on their culture and religious upbringing which leads them to conclude that if one life has to go then the "crime" is too great to contemplate so both should be allowed to go as "God" takes them. It is a viewpoint just as the Japanese believe that loss of face means seppeku and so on. The closer they stay to the "Thou shalt not kill" command I would think the more difficult it will be to sway them and the only answer will be under those circumstances to remove control from them - if that is the decision that is made.
Lastly, would you not agree that there is a difference between finding yourself in a triage position in which your role is one of damage control, and this type of intercession in the affairs Sure this is damage control - What is the damage? Think before you shoot!
Andrew Robinson:
There isn't a right answer to this one. A utilitarian ethical model allows the surgeons to separate on the basis that they are doing maximum good to Jodie by doing so: she has the chance of independent life if separated from her twin, but will die if she continues to be Mary's life-support system. Mary's death is inevitable either way, so her death under the knife is merely an unfortunate side-effect of the surgery and morally justifiable.
But the parents are Roman Catholics, who hold that all human life is sacred and no one human can be held as intrinsically more valuable than another. Therefore as the operation would end Mary's life it cannot be justified. Thus masterful inactivity becomes the moral choice. Both will die, but Jodie and her parents won't have to live with the knowledge that she survived at the expense of her sister.
Both are sensible ethical frameworks. So while it wouldn't be my personal choice, I'd be in favour of allowing the twins home with their parents for palliative care. On the basis that it's the parents who will have to live with the consequences of the decision, they should have the final say.
Richard Wenstone:
David says: "Like withdrawing food and water from a terminally ill patient- which is legal in Britain". That requires some comment. The situation here in Britain is not quite so clear cut as your statement suggests. Firstly Scottish law differs from English (strictly English and Welsh) law on the withdrawal of nutrition from PVS patients because of prior court decisions. The practical result of judicial decisions on past cases in both parts of Britain however is that a doctor (or hospital) would probably have to go to court in order to decide on a particular future case. In addition the UK's ratification of the Human Rights Act (in full force from 1 October) will undoubtedly complicate this issue further (and that of withdrawal of care in general). One can almost hear the lawyers sharpening their quills.p> Jacquie McCalman:
Able to look at this from 2 perspectives I find myself unable to understand where the parents are coming from, and yet totally understand at the same time. As a mother who delivered triplets at 27 weeks 5 days gestation I have problems with the " life at all costs" type of analogy.......... I suppose my ( oops "our") backgrounds in ICU nursing and medicine gave us a totally different perspective. If faced with a selective termination had we had more "kids in the litter"- I would not have hesitated.... survival of the fittest vs the demise of them all...... it hardly seems a choice to me. Call me callous, unfeeling. We had even discussed NFR for our kids with the paeds team whilst they were still in utero. Very clear cut in our eyes, there is definitely a difference between living and life.
Now pregnant and pushing 40 , we were again faced with another ethical dilemma. What to do if the ammio results were " bad"...... there wasn't an alternative........ 4 kids already here , the concept of a disabled child added to the equation. Who ultimately would have been responsible 40 years from now??. "Living" for the rest of out family ,as we know it, would stop immediately if we had a disabled child....- even with the added bonus of our medical training and a hubby finally reaching the pay scale of a specialist in the near future. Luckily we didn't have to make that choice...... But again there wasn't any choice . That doesn't say that it would be easy.
so to this scenario....... we were so lucky to have our backgrounds to aid us in the decision making process. These poor parents will have to live with a no win situation either way- kill the sick twin to save the healthy one....... or let the healthy one die to keep the " parasite" twin alive until she saps everything out of her sister. Face it- the sick twin is already dead- if it wasn't for her sister. She has negligible neuro function and no heart function. Isn't she really just a disease parasite that, if left untreated, will kill her host? Isn't the purpose of medicine to " cure" Jodie of the " illness" that threatens to kill her??? What right do the parents have to kill the healthy one for the purpose of feeding the parasite?? , or for the sake of alleviating their " guilt?"
We " allow" a court order to give blood transfusions to children whose parents will not consent for religious reasons. Medical staff make decisions to withdraw treatment, and discontinue life support all the time. Is this really any different??
Jim Cowan:
5/8ths of a second? I am not nearly so certain.. We, as a society, have prosecuted lifeboat survivors who killed shipmates to guarantee their own survival! Members of the Donner party would have swung from the gallows if it was proven their campmates were killed to guarantee the survival of some? "First, do no harm".....I am not a physician, but does that not extend to it being a mistake to be so certain of an outcome that you are willing to take a life to save a life? I would second guess myself until the day I stood before my maker and asked what he would have had me do....
David Crippen:
We have also sent soldiers onto beaches in France knowing that many if not most would be killed in an effort to gain a much greater salvation of life later down the road.
Jim Cowan said: "First, do no harm".....I am not a physician, but does that not extend to it being a mistake to be so certain of an outcome that you are willing to take a life to save a life?" I say: Depends if you are extrapolating that "taking a life" means the same as "letting die". If you say they are the same, then by that standard, the rules of warfare if not emergency department triage would radically change. If presented with two patients at the same time, one with a 90% chance of death and another with a 50% chance of death without instant intervention, you would treat them at the same time allowing a strong option for both to die because you couldn't bring yourself to favor one over the other. If you were a First Lieutenant squad leader in Vietnam and an instant decision had to be made that might put your best friend is serious jeopardy in order to save the rest of the platoon, you couldn't bring yourself to make that command decision and would feel right about 50 men dying because you weren't the one deciding on the fate of one.
Jim Cowan said: "I would second guess myself until the day I stood before my maker and asked what he would have had me do...." I say: I have a friend who was faced with a decision in 1968 whether to stay on a creaky communications rig in an exposed position in the middle of an all out assault by hardened NVA regulars to call in focused artillery to save an entire platoon from being overrun or stop and render first aid to young men ten feet from him literally dying before his eves of bleeding and other short term lethal disorders. He chose to coordinate the accuracy of that fire wall and he bitterly second guesses that decision to this day. The people that gave him a Silver Star believe that many more lives were saved in those moments that would have been wasted. Those put in positions of command decision are always at the mercy of second guessers in armchairs or classrooms but it is how things get fixed rather than thought about.
Did you ever see that movie a while back...can't recall the name of it...about the guy who went to court martial for firing on a crowd of people hiding snipers in order to save the lives of his men. I think it was Samuel L. Jackson. that was a very interesting motion picture and I saw a lot of thinly veiled tears on the cheeks of some 50's year old guys in that theater. Not to be overly melodramatic, but if it comes down to making decisions that directly affect life, there are those that decide to action and those that philosophize about deciding. In the end you do something or you don't. If you do something, you run a risk of doing something wrong. If you do nothing it doesn't matter. I believe anyone who can't bring themselves to make those decisions should be teaching in a classroom. This is a young life being progressively sucked dry by a parasite that has no chance of life on it's own but a strong probability of causing death. The decision is clear.
Having said that, here's how this case would play out if it happened in the USA. The parasitic Mary would clearly come under the Americans with Disabilities Act and the law would be clear. She would be separated from Jodie and then maintained at public expense in a pediatric ICU on a ventilator, left ventricular assist, dialysis and whatever else it took to maintain her vital signs until she died of something that could not be supported on a machine. it is her right as an disabled American.
Jim Cowan:
Several problems with all this. First, the "experts" assume total knowledge of the outcome. Mary and Jodie may well survive. To the best of our knowledge they may not but in acting upon our "assumption" despite our knowledge, we create a "self-fulfilling" prophecy and leave nothing for the possibility that we may be wrong. Secondly, the information presented here is misleading. The parents do not wish to allow both children to die, in fact they wish both children to live. They simply are not willing to kill one child to save the other and that is not the same thing.
The "state" has assumed responsibility for the children and appointed representatives for both. As a representative of the stronger twin, could you ethically argue that she would want her sister killed or even would have the right to request the same simply to improve her own chances of survival recognizing that neither is guaranteed albeit Mary's chances do appear dismal. I understand the need of a society to protect it's members but I am very uncomfortable with the idea of the "state" assuming such a role in deciding to kill one individual to improve the chances of another unless that individual clearly, and without equivocation cannot survive. To go even further and to do so against the wishes of the parents and possibly even of the surviving twin is highly questionable. In fact, I believe legal precedent exists in which such an act would be considered a crime. Much is being assumed here, perhaps too much.
David Crippen:
If the information that we have is correct, Mary has no functioning heart or lungs, has neurologic deficits and probably hypoxic brain injury. We need to labor under that assumption for this argument.
The parents position is untenable. If the same parents were to desire their diabetic child not get insulin because they had a dream it's diabetes would be miraculously cured if they withheld as a sign of faith, you wood run not walk to the nearest justice to get an order. Why is is so difficult to believe that a decent doctor would protect a salvageable child from well meaning but clueless parents .
Leslie Whetstine:
One of the reasons this case has been so difficult, I think, is because there is no ethical position that I know of that sanctions killing one life to save another. So, let the rhetoric begin! Technically it can't be claimed that we're simply allowing the weaker to die because we're doing an active operation-- a procedure to disengage her from her sister that defacto will kill her. There is a moral maxim that states that killing an innocent is ethically and morally wrong, it's a universal law and it is always and everywhere a corrupt action regardless of the circumstances. Most of us probably agree with it, if you're a strict deontologist you'll never deviate, however sometimes moral code and laws are not very helpful in practice as FL noted, so we must leave behind academia and do what we think is right in a bad situation all around.
The circumstances are tragic but they do require action be taken, I have learned the very hard way that sitting and crying does nothing and I don't intend to practice ethics by vacillating and wringing my hands paralyzed to make a decision for fear it's the wrong one --I may be wrong but I'll accept that responsibility. Allowing both to die is not a viable option, it violates the best interests standard for the healthier twin. This is why the parents have forfeited their right to make decisions. I don't know how other countries work, but in the US 'Parens Patriae' mandates the state to intervene and act as parent if an individual's best interests are in danger. Paternalistic, yes--but a good safeguard in my humble opinion. I think it's perfectly ethical to proceed through the court system, the parents maybe can't bring themselves to make a decision, but that doesn't mean nothing should be done. Sometimes people need others to do things that they cant do for a variety of reasons, in this case the courts must get involved and rightly so. What to do?
There are many different ways to do ethics, a strict deontologist will never waiver in light of circumstances or situation, the codes are always the same regardless of the consequences--like the maxim of killing innocents above. I like to think that's a noble way to live but it's very difficult to pretend we live in a bubble where consequences don't affect our judgments and duty to these codes is our only responsibility. I personally tend toward a moderate/rule utilitarian perspective that acknowledges that there are in fact rules, that the killing of an innocent is undeniably corrupt, but there may be in some very bizarre circumstances such as this one where we have to make exceptions to these rules. Some ethicists have tried to talk there way around this case claiming that this isn't a traditional active killing. I find this discourse disingenuous and I don't care much for semantics games. The fact is the weaker baby will die if we do the operation and we will have killed her--but it must be done to save an individual that has the capability to live.
Intentionality is another important factor to be considered in addition to the consequences. We must ask what our intentions are in this case. If the intention is not noble but the consequences following the action are beneficial, is the act still right? In the same vein, if an intention is noble then an act that would be typically unjustifiable may be given some leeway. Thinking back to my classroom days I recall an example that may help frame this a bit better than I can articulate it: A man donates a large sum of money to a charity in order to seduce a female worker at the organization. The donation which is generally though to be an act of good will is tainted because of the intention. The action cant be evaluated merely on the consequences (money to the organization which funds projects) which is objectively beneficial. Under this analysis, the point in our case is our intention and the consequences of our actions. Our intention is to save a life that will in all likelihood prosper if given the chance, the consequences of this action are that a weaker child will die. If we choose not to act even though our intention is to let God's Will reign-the consequences are worse all around-they both die. I don't see any other options. We're not drones, we need to make these decisions with compassion and reason, not blindly according to moral codes.
David Crippen:
Leslie Whetstine says: "One of the reasons this case has been so difficult, I think, is because there is no ethical position that I know of that sanctions killing one life to save another". I say: Then we have no problem since this is not a case of "killing" anyone. It is a case of allowing someone to die of an untreatable disease process that will result in death anyway no matter what treatment is afforded. that isn't the same as killing because my frame of mind is different. Killing is an act designed to take life. Letting die is an act that lets nature take it's course, as it eventually will anyway. We do this every day in the ICU when we withdraw and or withhold for eventual fatal outcomes. I see NO difference in withdrawing from this moribund infant.
We are withdrawing life support from a patient that has no potential to survive and with or without the current life support systems in place (the sibling). It will NOT kill her. It will allow her to die from an ultimately fatal disease process (no functioning heart or lungs, neurologic deficits and hypoxic encephalopathy)
Todd Ludwig:
David Crippen said: "Not to be overly melodramatic, but if it comes down to making decisions that directly affect life, there are those that decide to action and those that philosophize about deciding. In the end you do something or you don't. If you do something, you run a risk of doing something wrong. If you do nothing it doesn't matter". I agree that generally there are those that act and those that think about acting - the ole' "the road to hell is paved with good intentions" saying. BUT, "if you do nothing it doesn't matter." Come on. "Tom Sawyer" by RUSH - "If you choose not to decide, you still have made a choice." Practically focused ethics can help people though. It can help us understand our decisions. It can help us gain objectivity over our choices giving us clarity and can help us recognize times when the subjective is necessary for compassion and wise judgment. Most importantly, however, it can help us see other people's points of view and prevent us from becoming too entrenched in our own positions. No, I don't want your kind of teacher.
You want some practical advice from an academic? Try this. My "Foundations of Moral Philosophy" professor discussed with us the idea that freedom arises from a developed ability to make decisions. If we give our children everything and never confront them with choices - i.e. you can have cake or cookies but not both - then we are really doing them a disservice. We limit their freedom by not teaching them how to make decisions. This idea, along with others, can help us to understand the indecisiveness we confront in the patients and families with whom we work. As this example illustrates, academics take action in a different fashion. They seek out the root causes of problems so the problems can be better understood and handled.
The important point to remember is that neither position can lay claim to being the only right position. These issues painfully force us to confront decisions where medicine, philosophy, theology, psychology and compassion collide and yet provide opportunities where they can hopefully can benefit one another.
Dick Burrows:
Sorry FL but you simply cannot trivialize the problem like that. Doing so does not say a lot for your concern or ethos. If there has been any benefit to ethical input over the years it has been to force medical man to control his shoot from the hip attitudes. You might not have any problems over this issue and, in fact, I don't entirely disagree with you but we do not live medical lives isolated and separate from society - allowed to go and do as we please and trivialize the lives of those who cannot help themselves. I would also say that if you feel that it should be allowable for Medical Man to make considered decisions to DNR in cases where treatment is clearly futile (which you have expounded upon at length) you do your case no good by such flippant responses where you consider the issues to be so clearly black and white according to your own judgment.
From a simple pragmatic point of view I would operate but I am not going to salve my conscience by considering the other child to be something less than human. The twin is a child who could not be expected to survive in normal circumstances and one child at least has the chance to grow up as a normal child but that is that.
Jeff Whitnack:
I only bought up the tinkering with the historical clock to provide a little backing off from the heat of the subject on the plate before us. IMO sometimes it is best to back away a bit and ponder such things. Not so much that they will be in any way decisive, but if just to provide a pause, a kind of philosophical sigh, and hopefully some perspective. Indeed the twin, the one surviving if the separation occurs, may be very grateful later in life for being saved. If so, I would imagine it will make for awkward moments and emotions both between and towards the parents. Especially when the future ground zero is 17 years!
Indeed what if a young James Dean had been such a twin survivor? That scene in the movie, Rebel Without a Cause, where he proclaims "you're tearing me apart" would take on a whole new twist. Ironic....the whole issue of whether or not to pull apart two newborn humans also revolves around the issue of how to pull apart the right to freedom of religion AND the right of children not to be the medical victims of such religious beliefs held by their parents (Jehovah's Witness denying blood products which could save their child, Christian Scientists, etc.).
In this instance I would go for the separation. If I were a judge ruling I would say (assuming the law backed me up) "you have your right to believe that it's up to God to decide whom will live and whom will die. But you did choose to deliver your baby in the hospital, did seek to avail yourself of medical care in the modern world. Please try then to view our actions and decisions in the same way that you would view any other natural occurrence or force of nature. We must and will do what we must do. Just as a crocodile might take a child whom strays too close to the shore, so too must we save the only viable life existing between your twins.... as you have managed to stray too close unto the shores of modern medical care. I hope you can find it within to thank God for this."
Jim Cowan:
David Crippen is setting up a straw man and then knocking him over. The child is alive, responsive and the precise nature of her condition is uncertain. She has a heart and lungs but is currently reliant on her sisters circulation. These twins are omphalopagus and the operation will involve a fused spine, a shared circulatory system, liver, etc. This is not a survive or not issue. It is a "kill one to increase the chances of the other" issue and they may still both die.
Remember the case of Angela and Amy Lakeberg of Indiana? Physicians argued with the parents that they should be separated and after much anguish the parents agreed. They were separated in 1993 in a ceremony in which Amy was allowed to die. Angela died 10 months later never having recovered from the surgery. What was accomplished? One child killed outright and the other survives 10 months or both live 3 to 6 months? The arguments in that case were the same as they are in this one. One should die that the other survive....the result was the death of\ both and shattered parents who were forced to decide to kill their child by well meaning physicians who made the same mistake you are making right now.
In addition, the Vatican has offered a safe haven to the twins and their family in an indefinite and completely free pledge of medical services as an "ethical alternative". Also, a London cardiologist has examined these children and disagrees with the time table the court was given. In his opinion the twins would survive longer than the initial estimates if no operation takes place. And to confuse matters a bit more, let us not forget that these parents only came to England for surgery to separate the twins. They are not English citizens. Their religion does not permit them to kill one child to save the other.
Medical opinions are varied but two English teams have reviewed the case and feel the weaker twin cannot survive. They also are concerned that the strain of keeping her sister alive "might" weaken and eventually kill the stronger twin but so far there is no evidence of that. Similar cases are known in which both individuals shared circulatory systems among other organs for some time. The case is not as cut and dried as it would seem. That is why it has created so much concern. Archbishop of Westminster Cormac Murphy-O'Connor, the head of the Roman Catholic Church there, sided strongly with the parents. "There is a fundamental moral principle at stake," he said. "No one may commit a wrong action that good may come of it. The parents in this case have made it clear that they love both their children equally, and cannot consent to one of them being killed to help the other. I believe this moral instinct is right".
The major legal question is criminal. As Lord Justice Ward of the Appeals Court said at the hearing, doctors operating on the twins could be charged with assault or murder. "The moment the knife goes into that united body . . . it is arguably in that second an assault," the judge said. "If Mary then dies, she has been killed. For what benefit? None of hers." This prompted a further argument as to whether Mary, who the doctors said could not live on her own, has a legal right to be protected from death. "One could arguably ask what benefit there is in protecting this non-viable life," said Ward. But David Harris, the attorney appointed to represent the interests of the weaker twin, replied that the law against murder exists not just to benefit a potential victim but "to protect the interests of the whole society." The appeals court ruling may not end the case. The parents have the option to carry their appeal to the European Court of Human Rights. Britain has agreed to abide by rulings of that court.
There also may be a diplomatic challenge since another country sent these children to Britain for treatment, and now the British doctors want to kill one of the babies against the wishes of the parents.
Thomas Stinson:
This is an interesting exchange and nicely illustrates the differing outcomes obtained when applying differing ethical systems. Utilitarianism (Act Utilitarianism, at least) would support doing the surgery, since ending the life of the almost certainly doomed Mary might well save the life of her sibling; this would represent, to most people, an overall increase in utility. However, Deontologists would probably disagree, since the duty of non malfeasance is taken to trump any duty of beneficence; that is, "doing no harm" is always more important that "doing good." These contrasting views of ethical foundations is usually discussed, along with illustrative cases and hypotheticals, in beginning ethics textbooks (e.g. Munson, Ronald. _Intervention and Reflection: Basic Issues in Medical Ethics_, 4th ed.)
Most contemporary ethicists are basically Deontologists, and Act Utilitarianism is usually condemned as a proper basis for ethics these days. Some of the triage examples given actually are not parallel to this situation, since they usually involve a choice of which injured person to treat (a choice of objects of beneficence), and do not involve malfeasance. For example, even in wartime, a doomed soldier would not be killed by draining him of blood in order to transfuse other salvageable soldiers. Anyone who did this would certainly be guilty of murder. In the end, making complex life-or-death decisions like this is difficult as Dr. Crippen implies; however, they must be made on some rational basis taking into account the accumulated wisdom of law and ethics over the past few millennia, rather than on the basis of their emotional affect on the decision maker.
Leslie Whetstine:
Tom Stinson says: " Most contemporary ethicists are basically Deontologists, and Act Utilitarianism is usually condemned as a proper basis for ethics these days" I say: This isn't a huge issue, I'm just curious, but I wonder how you've concluded that most contemporary ethicists are Deontologists? In my training over the past 8 years I've seen a diverse mindset-but for the most part I think contemporary ethicists have recognized the severe limitations and inflexibility of Deontology forcing them to consider alternate theories. The majority of contemporary ethicists and society in general actually tend to favor some form of consequentialist theory over Deontologism. There are many different ways to be a Consequentialist, Deontologists are not afforded the same latitude.
Utilitarianism still has an air of crudeness associated with it, but there are different breeds of consequentialist theory aside from the traditional Radical Act Utilitarian ideology. Simply consider the variations on utilitarianism alone 1) Moderate Act Utilitarianism, 2) Strict Rule Utilitarianism, 3) Moderate Rule Utilitarianism, 4) Ideal Utilitarianism. Other consequentialist theories include situationalism, proportionalism, intuitionism, etc. My point is that I don't think it's accurate to categorize the majority of contemporary ethicists as Deontologists, there are many theories to choose from and I think most ethicists actually tailor and construct an amalgam of theories that work for them rather than subscribing to one limiting viewpoint such as Deontology.
Tim Buchman:
The theme of parents having to make terrible choices is at least as old as written history (cf. the sacrifice of Abraham in the Old Testament). We who practice "medicine" have the dubious privilege of hosting this theme in the 21st century. There is irony in a greater societal concern for dying the "good death" than for living a "good life". The rescue imperative that fuels so many caregivers--me included--drives us further into the endless frontier: we can save 1000 gram babies, what about 750, what about 500 and so on. What is described as medical courage may produce wondrous achievements but is horrific in many other contexts: how many "normal" children die for lack of food and basic public health measures for the price of this courage? Is the rescue of "one" a fair exchange for the sacrifice of "many" when none can speak for themselves?
In declining a specific surgical intervention, the parents commit no sin. Neither are they deserving of our condemnation. They are their offspring's eyes to the adult world, forced to make moral and spiritual decisions none of us would choose to face. They are aware of the consequences of their decisions. Ethics are a framework for human decisions. Ethics are also human constructs, incomplete and flawed. It is reasonable to use this case to understand how our ethics are incomplete and flawed. But it is repugnant to project the contradictions of our ethics into this tragic family. The parents deserve our support, the children our prayers.
Rainer Gedeit:
I have been reading all this with much interest. However don't you think what we as physicians need to do is get some real data. Relying on Time magazine for an explanation of the clinical scenario is rather stupid. As anyone who has ever been misquoted by the press knows, they will print what they need to get the response of outrage that we all have been spouting. Before passing sentence on the parents, doctors or children let's find out abut the anatomy and physiology involved in these two children. What sort of chance do either of them have for survival (as if we can really predict it)? What is the real level of functioning of either of these children. Being "bright eyed" means nothing. Give me a neuro exam and a developmental assessment. Show me the MRI, angiogram etc. Then I can try to make a somewhat logical decision on what the outcome might be.
As for the parents, not knowing what they are thinking or feeling makes any judgment against them impossible. Being a Pediatric Intensivist I have sat with many parents and discussed the life and death of their children. And, believe me, you can never use hearsay to determine what they want or think. You need to look in their eyes and see the body language to try to understand the pressures they are feeling when they make this kind of decision. Allowing the court system to determine medical care is one of the worst things we can do. The decision depends on the personnel views and, in the US at least, political needs of judges.
And, finally as a parent, I would hope that those passing judgment on my decisions would at least get all the information. I could not make a decision until I have more information. That will temper personnel biases and "ethics".
John L Holmes:
I am not a trained ethicist, just a humble physician. It has always bothered me that society often fails to grapple with what it is that defines a human being. To my (untrained) way of thinking it means the actual or potential ability to be cognisant, to be aware of self and to emote. I realise that this simple definition is inadequate to differentiate humans from other species and also is hazardous when discussing end of life issues for the severely demented or otherwise brain damaged.
However, it just seems to me that what we are really confronted with here is sacrificing a non sentient organism, that just happens to be invested in an incomplete human form, in order to save a (potentially) normal, sentient human being. If this child were to be threatened by a vicious dog we would not hesitate to shoot the dog. Yet the dog probably has more sentience than Mary ever will have. What is so special about being born of a human parent that automatically invests a sacred "humanity". The possession of the semblance of human form does not, in my opinion, constitute a human being. I will never be convinced, for example, that an anencephalic baby is a human being. The body may be the repository of the soul ( let soul = humanity) - but there has to be a soul in the first place. In other words, a body devoid of essential humanness is not a human being.
In conclusion - to let both conjoint twins die is an abrogation of responsibility and to my way of thinking a greater evil. I would not hesitate to do everything to save Jodie and let Mary take her chances. The greatest good for the greatest number - even when n=2. To do nothing is to do the greatest harm to the greatest number - and where' the ethics in that?
Tony DeWitt:
I think in large part the court system offers some advantages in terms of full disclosure and a chance to have an advocate appointed for the patient (called a guardian ad litem). However, it is rarely fast, and it cannot be counted on to provide a decision that is final until all sides have finished appealing. For example, although the state tobacco case settled in November of 1998, in Missouri we are still fighting over that settlement and the case is nowhere near finished.
Frequently these cases put a drain on all those involved, and no one is really happy with the outcome. In those instances Judges say they know they've done justice... and in private they agonize over what they do. My boss wrote the Cruzan opinion in Missouri that served as the basis for the US Supreme Court decision. I know that he put heart and soul into that opinion and it reflects his bias that if we err, we choose to err on the side of life. Is that a perfect system? Nope. But there isn't one.
David Crippen:
. This is not an idle academic exercise. This is an authentic call to action. There is an innocent dying on the vine as we sit around and debate academic concepts that don't translate into deed. And every call to action is attended by those who remain in the comfortable arms of conventional wisdom and those who rush where angels fear to tread. It has always been this way throughout history. First we listen and then we act. But there are no apparent ironclad ethical guidelines here and so it then comes time for someone to do something other than nibble at circular reasoning. In a world where the ONLY option is two evils, then the lesser of the two evils must prevail. There is an survivable innocent human life at stake and the non survivor has a righteous obligation to step aside. And if bystanders disagree, invariably for pointless reasons, they must be swept aside by a judiciary system that is supposed to be there to protect innocents.
Everyone has talked enough and conventional wisdom has been weighed in the balance and found safe, as it always is. Now someone must take the bull by the horns and wrestle it to the ground. It is not a time to go gently into that good night. It is a time for passion and sensibility and doing the right thing not because it's safe or salves the conscience but because it's the right thing and that is enough.
We shall see.
Aftermath by David Crippen:
Judges rule Siamese twins can be separated. September 22, 2000 Web posted at: 9:58 AM EDT (1358 GMT)
LONDON, England -- An operation to separate the Siamese twins at the centre of a live-or-die ethical and legal debate in Britain is to be allowed to go ahead, a court has ruled. The UK Court of Appeal gave its ruling on Friday after being asked to decide whether doctors should be allowed to separate the six-week-old girls in an operation which will kill one child to allow her sister to live. The appeal court judges had agonized over what they said was an "awful dilemma."
As he arrived at the court to deliver the verdict, Lord Justice Alan Ward, one of the three appeal court judges involved in the decision, said: "It has been excruciatingly difficult. "One's heart bleeds for the family. Fifty percent of the population will agree with the decision, 50 percent will think we have gone potty." The conjoined twins, identified only as Mary and Jodie, are joined at the abdomen and share just one heart and one pair of lungs.They are joined at their lower abdomens, with their heads at the opposite ends of their merged bodies and their legs emerging at right angles from each side. Their parents, who traveled from their home in the eastern Mediterranean to Britain for the birth, are devout Catholics and have said God, not doctors, should decide whether the twins live or die. Doctors say both girls will die within months if they are not separated. An operation to separate them would kill the weaker twin Mary, who depends entirely on Jodie for her blood. The parents now face the option of accepting the Court of Appeal's decision or appealing to a higher court -- either Britain's House of Lords or the European Court of Human Rights.
The couple's lawyers said if the ruling went against their beliefs they will consider a further appeal. At the Appeal Court, Lord Justice Ward, sitting with Lord Justice Brooke and Lord Justice Robert Walker, said they were being asked to decide: "Do we save Jodie by murdering Mary?" Central to the court's decision was whether each twin should be legally considered as an individual living human being, or whether the fact that Jodie, the stronger baby, has a heart and lungs gives her more right to life. Lord Justice Ward said: "Say yes and you murder Mary, say no and you murder Jodie. This is the most awful dilemma to contemplate."
In a statement read in court during the two-week hearing, the parents said: "We came to England to give our babies the very best chance for life in the very best place. "Now things have gone very badly wrong and we find ourselves in this very difficult situation. "We believe that nature should take its course. If it's God's will that both our children should not survive then so be it." The twins were born at St Mary's Hospital, in Manchester, north England, on August 8. Following the birth, the UK's High Court ruled that the twins should be separated against their parents' wishes, but an appeal was launched to fight that decision.
The Vatican said it was wrong to separate the twins against their parents' wishes and offered a "safe haven" for the family at one of two specialist medical centres in Italy. Cardinal Ersilio Tonini, Archbishop Emeritis of Ravenna, in north east Italy, and the Vatican's principal commentator on medical ethics, said the offer was an "ethical alternative." Dr. Richard Nicholson, editor of the Bulletin of Medical Ethics, has said that if the separation of the twins goes ahead, the quality of Jodie's life could be severely affected. "Her prospect of any high quality of life will be very small," he said.
Rainer Gedeit:
What will the court think if both of them die or Jodie suffers a significant complication? I'm sure this is not a risk free procedure for the "stronger" twin.
Dick Burrows: I'm sure they did. Other than to have subjected them to a failed procedure you can only decide what to do on the information at hand before action is undertaken. That information appears to have been such that quite simply a choice between one or both of them had to be made. I should imagine that if it had been a situation where they were both likely to die irrespective of the operation then operation would likely not have been contemplated. On the other hand if it were an operation where one of the twins was non sentient (? not alive) there would be be no question as to what to do either.
The court considered its verdict and came to its own conclusion. We must accept that. There are other areas where the courts might be wrong - in sentencing an innocent to die for instance. You can't go back and hang the judge for the mistake if the court has come to what appears to be a fair decision based on the information at hand - although there may be repercussions if there has been a deliberate miscarriage of justice (Birmingham six?). It is all part of the checks and balances that are put in place to try and prevent a disaster. In any event there can be no guarantee of a successful outcome but that is part of what decision-making is all about and Medicine is no different.
Anonymous:
I was in England the day the High Court handed down its opinion. Justice Ward used the argument that seems to me to have the greatest chance of surviving on appeal to the House of Lords, namely that the physicians are authorized to defend Jody from Mary, who is threatening her life. There are apparently precedents for "defense of others" even when the "attacker" is not intending the attack. This serves to overcome the weaker argument used by the trial judge, which came closer to saying "it is all right to take a life that is of diminished quality and length in order to save another life that may be longer and of higher quality." That argument, if extended, would justify removing transplantable organs from a very sick (but not dead or even imminently dying) patient in order to save a larger number of organ recipients.
That said, I found myself hoping that a US court would not have ruled the same way. When the parents' choice is not one based SOLELY on religious beliefs (the argument being that parents should not be permitted to make their below-the-age-of-choice children "martyrs" to the parents' religious views which the children have not chosen on their own) but instead represents a rational weighing of the benefits and burdens of an intervention--and, especially in this case, an intervention which not only involves the death of one child (with the psychological, if not legal, burden on the surviving child and parents of having "profited" from the taking of the life)--then it seems to me there is no basis for disqualifying the parents as decisionmakers. The question is not whether we agree that they have made "the best" choice but whether the choice they have made and the process through which they have made it indicates that they are incapable of exercising their responsibility to decide in the children's best interest, the latter being not a "point" (THE BEST outcome) but a "range" of outcomes about which conscientious and competent decisionmakers might reasonably agree or disagree.
Given the extent to which this whole intervention is "experimental" (in the sense of being rather novel, singular circumstances, with an outcome for Jody that perforce involves a great deal of uncertainty), I am dismayed to think that physicians will be permitted to impose their views on the children and to displace the choice that the parents, persumably after being counseled by the physicians (and others) have made on their children's behalf.