This article appears in the November 2000 edition of the Catholic Medical Quarterly
The Conjoint Twins II
The Guild’s stand on the High Court judgement
to the Manchester conjoined twins
The tragic case of the conjoined twins received plenty of media coverage. It appears that the Guild was the only medical group which made a statement on this matter, and came out against the ruling of the High Court, which said that the twins could be separated against their parent’s wishes. When the news of this broke on August 26th, many instinctively thought that the Court judgment was correct, reasoning that it was better to save the life of one twin than allow both twins to die. This article explains the reasoning behind our decision to issue a statement to the press critical of the High Court judgement. The press statement was issued on 3rd September, the day before the Appeal Court hearings started.
In the published judgement Mr Justice Johnson described the medical scene in these terms "Jodie is a bright alert baby, sparkling, sucking on her dummy, moving her arms as babies do and, in the words of one of the doctors, ‘very much a with-it sort of baby’. She has a functioning heart and lungs. Her legs are set wide apart but that can be rectified by surgery and the probability, so I find, is that separated from Mary, Jodie would be able to lead a relatively normal life, probably walking unaided, probably attending school and probably being able to have children. For Mary, things are very different. Her face is deformed but more importantly she has no effective heart or lung function. She lives only because of her physical attachment to Jodie...... For Jodie, separation means the expectation of a normal life; for Mary it means death."
It was on this basis that the media reported that Mary had no heart or lungs. In the subsequent Appeal Court hearing, held in public, many facts emerged which showed that the original impression given to the press was incorrect in many important respects. Jodie and Mary are joined at the caudal end and form a straight elongated cylinder with a head at each end and four legs at the midpoint [The medical classification of the type of conjoined twins in this case is Ischiopagus tetrapus - with this form there is junction at the pelvic level often with sharing of genitourinary structures, rectum and occasionally liver]. Mary has a heart, albeit enlarged and poorly functioning. Mary also has lungs which are poorly functioning and were very stiff when attempts were made to ventilate her. It was also revealed that the spines are fused and they share a bladder possibly with abnormal bowel, although exact details were not revealed / known. Complex reconstructive surgery possibly over a prolonged period was likely.
The judgement quotes at length from the written evidence given by the parents. Part of their statement reads:
"We cannot begin to accept or contemplate that one of our children should die to enable the other one to survive. That is not God’s will. Everyone has the right to life so why should we kill one of our daughters to enable the other to survive. That is not what we want and that is what we have told the doctors treating Jodie and Mary. ........... We certainly do not want separation surgery to go ahead as we know and have been told very clearly that it will result in the death of our daughter Mary. We cannot possibly agree to any surgery being undertaken that will kill one of our daughters. We have faith in God and we are quite happy for God’s will to decide what happens to our two daughters."
A fundamental principle of the sanctity of human life is that it can never be morally permissible to take one innocent life for the benefit of another. This is the understanding which the parents have of their situation, and hence their adherence to that principle and refusal to consent to the surgery proposed. On the information available to us at the time, this was also our view.
Some argued that in this case the argument of "double effect" should apply, whereby the death of Mary was not the primary objective of the separation, but a foreseeable side-effect. However Mr Justice Johnson stated in his judgment "That argument was not addressed to me and I think rightly so." So on what grounds did the judge reached his decision? He used the Bland judgement, which allowed for the withdrawal of food and fluids (argued to be medical treatment) to bring about the death of Tony Bland. (The Bland judgement is one that the Guild of Catholic Doctors has always opposed) The judge reasoned that Mary’s death will be caused by the "interruption or withdrawal of the supply of blood which she receives from Jodie" and therefore in accordance with Bland was lawful.
There were other worrying aspects to the judge’s ruling. He stated: "During the course of the hearing I raised with counsel and with one of the paediatricians the question of pain. Mary cannot cry. She has not the lungs to cry with .... In pain but not able to cry. One very experienced doctor said she thought it was an horrendous scenario, as she put it, being dragged around and not been able to do anything about it... I conclude that the few months of Mary’s life if not separated from her twin would not simply be worth nothing to her, they would be hurtful... In medical and physical terms to prolong Mary’s life for those few months would, in my judgment, be very seriously to her disadvantage." [our emphasis] This aspect of the judgement was never commented on by the general media but in effect the judge is arguing that Mary should be dead for merciful reasons. This is euthanasia. [In the subsequent appeal court hearing a paediatric neurologist could not agree that Mary was in pain, nor that the issue of pain was a relevant consideration in this case]
It was for this reason that the Master (Dr Jarmulowicz) and chairman of JEMC (Dr Cole - a paediatrician) considered the necessity of a public statement from the Guild. Before issuing a statement we also considered whether using the "double effect" argument to justify this surgery, would alter our view of the judgement. In this context we were mindful of the Church’s teaching on "ordinary" and "extraordinary" treatment. By any criteria the separation of identical twins is ‘extraordinary treatment’. Although each operation is unique it is high-risk. Since 1985 the Great Ormond Street team has received 16 referrals. 12 of the 32 babies have survived. In the past 20 years only four sets of conjoined twins had been successfully separated without a fatality. It is accepted that extraordinary treatment is morally optional, and factors like the risk of death and the burdens of treatment are legitimate considerations to be made. According to a published series from the Children’s Hospital of Philadelphia "The most complicated form of conjoined twins is ischiopagus twinning." We felt that the parents should be crucial participants to such a decision. The parental bond is extremely strong, and is an example of true altruistic love. Most parents will be prepared to make supreme sacrifices for their children. We believe that they are in a unique position and are probably best at discerning the correct course of action to be taken in this most difficult and complex situation. Dr James O’Neill, from Philadelphia Children’s Hospital writes "Although we have held the view that it is preferable to intervene to save one life if possible rather than to permit the loss of both, it is important to emphasise that the parents have the ultimate right to accept or refuse surgical separation. Every case is different and must be approached with utmost sensitivity for the rights and feelings of the parents and their children."
Another surprising fact also became known. The Manchester team, with no record of successful separation of Siamese twins, went to court to overturn the parents’ refusal, without first seeking a second medical opinion from the experienced Great Ormond Street team. Surely in the current era of clinical governance, and particularly in such complex cases, referral to Great Ormond Street should have been automatic.
Furthermore the family are foreign nationals who had come to this country seeking the best medical advice. It had already been publicly announced that a Catholic hospital in Italy would provide care in accordance with the parents’ wishes. There are other almost identical cases around the world where surgical teams have refused to operate because they could not morally accept the killing of one of the conjoined twins for the benefit of another [The Loyola University Medical Center in Chicago, refused to operate on twins who shared a single heart, and separation was done at Philadelphia where one twin died at surgery (as planned) and the other died ten weeks later. Professor Ignazio Marino, from Italy refused to operate on a similar case earlier this year for identical reasons.]. Although the medical judgment, that without separation both twins will die within six months may be correct, there are many examples of conjoined twins who have not been separated and lead fulfilled lives.
After consideration of all these facts we felt it appropriate to issue a press statement which is published below.
3 September 2000
about the Manchester conjoined
The Guild of Catholic Doctors wish to express sympathy for the parents of the conjoined (Siamese) twins born in Manchester on the 8th of August. It also strongly supports the statement of the father given to the court, which we find compelling and feel should be regarded as definitive;
"We cannot begin to accept or contemplate that one of our daughters should die to enable the other one to survive. That is not God's will............ We have faith in God and are quite happy for God's will to decide what happens to our daughters".
The view of the parents is evidently opposed to that of the medical team who have sought, and won, a declaration through the courts that it would be lawful to separate the babies against the parents wishes, inevitably causing the death of one. We believe that the parental bond, expressing truly altruistic love, is better at discerning the best interests of these babies and we feel that in these circumstances it was wrong for the medical team to seek court approval to override the parents wishes. We also disagree with the reasoning the court has used to reach its decision.
Furthermore it must be said that this declaration has been imposed on foreign nationals from a Catholic country and against their faith. Unlike other decisions where parents refuse treatment for other religious reasons, this is a decision about ending one life for the benefit of another. Its implications in end of life decisions are grave indeed.
We understand that a diocese in Italy have offered the family a "sanctuary" in a Catholic hospital. Any attempt to prevent the family from seeking another medical opinion overseas would raise issues of fundamental human rights.
As doctors we remain convinced that the welfare of these babies and their parents are best served by medical personnel in whom they have confidence, and jurisdictions which they accept.
30th September 2000
Press Release II on the conjoined (siamese)
following the appeal court judgement
The Guild of Catholic Doctors publicly supports the parents of the conjoined twins for moral, ethical and medical reasons. They were clearly not under a moral obligation to consent to the death of one of their daughters to give the other a chance of a longer life.
Ethically the utilitarian argument "saving one is better that losing two" has frightening implications for the weak and vulnerable. There are just too many persons with disabilities, or who are near dying but have bodies which could be useful to others to admit such a dangerous principle.
It was also right to recognise the parents altruistic love for both their children. To evoke the power of the State to embark on what by any reckoning will be a hazardous operation, frankly mystifies us. The doctors were free to accept the refusal of the parents without penalty, and now must be fearful of proceeding with the eyes of the world upon them. It is a situation that any doctor would dread and must diminish the chance of success. We note that the Court judgment is permissive - ie gives doctors permission to operate; it does not order them to operate. We appeal to the Manchester surgical team to reconsider their position and accept the parents wishes not to attempt separation.
There are still medical doubts about whether Jodie’s heart with some help from Mary's cannot sustain them for a very considerable time and the courts were given contradictory medical evidence on this. Jodie’s heart is not enlarged or beating fast and is supporting a normal blood pressure and achieving 100% blood oxygenation. We have often seen children survive for many years on a single ventricle or with bizarre congenital heart abnormalities.