The loss of the new national paediatric hospital adds to the hurt in the Protestant community over broken promises at Tallaght, writes Kathy Sheridan
When two of the country's most senior Church of Ireland figures told its General Synod recently that they feared for the future of Tallaght hospital and its special ethos if its paediatric service was removed, it sounded ominous.
After all, some Catholic-run hospitals have worrying form when it comes to patients' interests versus religious orthodoxy. Just nine months ago, it was revealed that a highly secretive sub-group - not the ethics committee - in the Mater hospital was responsible for a decision that intially denied potentially life-prolonging drug trials to female patients who were gravely ill. The sub-group's rationale was that these patients were required by the trial protocol to use birth control, since the drug could affect an unborn child, and this would be contrary to the hospital's Catholic ethos.
It later emerged that the user leaflet also advised abstinence as a way of preventing pregnancy. "These were very ill women, hoping to spend the last few months of their lives with their small children," says doctor and senator, Mary Henry. "They weren't even asked if they would abstain from sex. That caused great fright and dismay and not just within the Church of Ireland."
At the same time, it emerged that Mater patients were often waiting six months before approval was given for drug trials; in Tallaght the waiting time was around eight weeks.
A strange, Alice in Wonderland style world unfolded, previously unknown to outsiders, where to obtain drug trial approval, doctors were by-passing their own ethics committees. By resorting to an EU directive which allowed them to seek approval from any other hospital in the State, doctors at St Vincent's (with its written code of Catholic ethics), for example, were able to proceed with trials by getting approval from Tallaght.
MEANWHILE, FEMALE STERILISATION procedures are still unavailable to patients at two of the largest State-funded hospitals, the Mater and St Vincent's, as well as at two of the flagship private hospitals, the Blackrock Clinic and the Galway Clinic.
This year, Tallaght Hospital - officially named The Adelaide and Meath Hospital, Dublin Incorporating the National Children's Hospital (AMNCH) - was forging ahead with its vision for a new national children's hospital and new maternity hospital, backed by its charter, which guarantees the primacy of the doctor-patient relationship; "inclusive and patient-centred, with no ethics committee imposing standards," as the Archbishop of Dublin and president of Tallaght Hospital, Most Rev John Neill, put it recently.
But it was evident from the tone of the General Synod speeches in May that the hospital could see the writing on the wall.
The Most Rev Robin Eames, Church of Ireland Primate and Archbishop of Armagh, told the synod of "serious concerns" for "the continuation of the particular inclusive medical ethos long cherished by this church and other Protestant churches" at Tallaght hospital.
In a hint as to what this might mean in practice, he added that Tallaght also "provided a significant place for this ethos in the delivery of paediatric services".
But now that the new national children's hospital is to be located at the Mater, the question is, what is meant by "ethos" in the context of paediatric services? Now that Tallaght has lost out, what do child patients stand to lose, if anything? Had the archbishop merely set out "to play the Protestant card in attempting to secure the new paediatric hospital for Tallaght", as alleged by the Dean of St Patrick's Cathedral, the Very Rev Robert McCarthy. Was it not the case, as the Dean suggested, that "wherever it is sited, the new hospital will presumably be a State hospital [such as Beaumont or St James's] following State rather than Roman Catholic medical practice"?
The archbishop explains that as president of a hospital whose charter guarantees the preservation of the rights of the Protestant community, he had some time before asked at the hospital what the ethical concerns for paediatrics would be if all roads for sick children led to a new, single hospital, one not governed by a Tallaght-type charter?
Those concerns, he was told, lay in the area of genetic research.
But what did this mean in practice? He suggested we speak to Michael Lyons, chief executive of Tallaght hospital, who would be up to speed on the detail. One month and many follow-up phone calls later, it has not been possible to make contact with Lyons.
According to one source, however, the "crucial line" of ethical concern is that between the diagnosing of a genetic disorder and genetic counselling.
A paper delivered to the Adelaide Society some years ago by Prof David McConnell of Trinity College (currently chairman of The Irish Times Trust), left no doubts about the significance of genetics. About 30 per cent of all paediatric hospital admissions and 40-50 per cent of all childhood deaths are due to genetic factors. Some 50 per cent of all cases of childhood blindness, deafness and intellectual disability are caused by genetic defects. New discoveries are being reported every day.
In 1965, scientists knew of some 1,500 diseases caused wholly by genetic defects; by 1998, more than 10,000 had been identified.
These developments have "huge" ethical implications for genetic counselling, said Prof McConnell.
In a case where a child is born with a hereditary disease, where there is a high chance that any future children will be affected, and where unaffected older children or close relatives may be carriers, a doctor acting in line with "generally accepted medical ethics" will make parents aware of methods of contraception, including sterilisation, and of prenatal diagnosis, he said: "In some clinics, it would be usual to mention other options such as in vitro fertilisation (which allows for the selection of embryos which do not have the disorder) or artificial insemination by donor." Clearly, he said, there are major questions about privacy that cannot be resolved by regulations. "Every case is different and in my opinion can only be treated in the absolute privacy of the relationship between the doctor and the patient."
The message from some in the field is that no such "absolute privacy" can exist within the ethos of a hospital governed by a Catholic ethics committee, or even a State hospital where what one source calls "enthusiasts" (ie fundamentalist Catholics) are or may become dominant. "Many Catholics at risk of having a child with muscular dystrophy, say, might not want to have an abortion but they do see IVF and pre-implantation embryo testing as an acceptable option. There are very, very great sensitivities here and they are not confined to Protestants," says one source. Another asserts that a parent going to a hospital which is "avowedly Catholic", cannot be confident that he or she will get the "full story" because such information may lead to parents making decisions incompatible with Catholic practices.
"I know doctors who would provide the full information but I'm not sure if they would help with arrangements for a therapeutic abortion abroad, for example. And there's the danger that they would be picked on by staff. 'Enthusiasts' could destroy a person's career."
These ethical problems are immense for all of us but the public is entitled to know the score and what individual members of staff are doing. In Tallaght, a doctor is not obliged to participate in something he or she regards as unethical but they are obliged to say: "I really cannot advise you on that."
According to Dr Fergus O'Ferrall, director of the Adelaide Hospital Society, this is "fundamentally about your status as a patient. It's the whole basis of how you treat people as a co-partner with the doctor and only they should co-decide. It's a different way of regarding the person; the individual has to decide before God what is right. The medical ethics committee in a Catholic hospital can second-guess or review a doctor's treatment decision and if it seems to be in breach of ethics, will not be allowed regardless of what the doctor wants to do.
'BUT YOU CAN come to Tallaght hospital as Protestant, Muslim, Jew, Catholic, and your privacy is uniquely protected. St James's, for example, though it is a State hospital, has nothing like that in law. It wouldn't have the same onus as a Catholic-run hospital, but the de facto Catholic approach will probably prevail."
Every source refers to the most controversial research issues coming down the tracks, specifically genetic and stem-cell - an area of medicine that promises to be a major influence during this century. They assert that Tallaght's framework of medical ethics is "best able to cope with these developments, because you will be dealing with people as co-decision-makers with their doctors".
By contrast, says Dr Mary Henry, the problem with the new paediatric hospital is that "no-one knows what will be offered to people there until it gets going. The one thing we do know is that you can rely on Tallaght continuing to operate within its known ethical guidelines. But look at what happened in the Mater last year. Everything seemed to be going along smoothly and suddenly, there was this bolt from the blue. We weren't even sure who was on that committee. I would certainly be very anxious about being admitted to any hospital that was not of a pluralist nature."
Another observer notes that there is an "assumption out there that when the nuns move on and hospitals are secular, that there need be no further concern". Yet there is a worry that right-wing conservative fanatics are growing in number, he says. "To imagine that they will not find ways of engaging with the health service's religious or secular hospitals is naive. People say that Humanae Vitae didn't make a blind bit of difference to how they live their lives - until they find that they are excluded from research in the Mater," the observer adds.
The National Children's Hospital, which was moved to Tallaght from Harcourt Street in 1998 , is the oldest in these islands, and is now based in the fastest-growing catchment area in Europe.
"That commitment to serving the poor of every denomination is why we came out here in the first place. We made a commitment to serve the needs of the women and children of this area," says Dr O'Ferrall.
But underlying the deep concerns about losing the national children's hospital to the Mater, is a more profound fear, the sense that the lone Protestant voice of the Irish health service, one of the last remaining official Protestant voices in the State apparatus, is being edged out.
Deliberately, say some.
The attitude of the British government - which continues to provide full legal protection and support for Belfast's Catholic-run Mater hospital - is contrasted poorly with that of the Irish Government, which, by this analysis, has overseen the growth and prestige of every other major hospital to the detriment of Tallaght, a supposed flagship hospital.
They recall, with some poignancy, the huge sense of excitement around the seamless opening of the new hospital, the heroic working hours put in by staff and volunteers which even saw one clergyman helping to hang new curtains.
But from the resignation of the world-class CEO, Dr David McCutcheon (who lasted two and a half years before resigning in 1999 in protest at what he perceived to be grave breaches of trust by the health authorities and went on to become the equiavalent of the assistant secretary general of the Canadian health service); to chronic underfunding and the refusal to fund the promised number of beds; to the awarding of a raft of prestigious services to the other major teaching hospitals, anchoring and securing their future; observers believe they have been watching nothing less than the dilution and dismemberment of Tallaght and its Protestant governance.
'THE ULTIMATE NEGATIVE decision was to remove the children's hospital," says one source, "because that fundamentally alters the structure of our charter in terms of the balance of the board and the scale of the operation of the hospital. It is a fundamental undermining of the solemn undertaking of the Government, approved by the Oireachtas."
"Ever since it opened, there has been no significant cutting-edge development, even when we've bid for one," agrees Dr O'Ferrall.
"In terms of securing the future of Tallaght as a university teaching hospital, in terms of taking away the children's hospital, in terms of having neither cancer nor cardiology services, a women's or a children's hospital, you make it impossible to see a long-term future. There has not been any sense that the Government has valued this as a key resource. It's not an issue of whether Tallaght can struggle on as a teaching hospital but as to whether a 30-acre campus can achieve the vision at its foundation. What is so wrong with Tallaght?"
Amid all the rhetoric from Government and the HSE about North-South co-operation, observers point out that functional co-operation requires that patients are willing to go North or South to hospital, which - if people judge their hospital by its religious ethos - will affect at least the one in five of the island population who are Protestant . . . The reality is that paediatric patients from the North will not come South to a Catholic hospital, says Dr O'Ferrall.
A sense of the deep hurt surrounding the persistent downgrading of Tallaght lies in his comment that the hospital was never officially opened.
"Imagine if you are the Church of Ireland archbishop and overseeing this hospital. I don't think it would have been left like that if this was a Roman Catholic hospital, such as St Vincent's, I doubt that there would not have been an official opening.
"So if you wanted to take offence, you could - because obviously this hospital is supposed to be the flagship of the healthcare system in Ireland and the Government was never in a position to open it. That's just a symbol of the problem, that there was never that full-blooded commitment to fund the vision and possibilities of the hospital."
Meanwhile, the rumblings around the new location of the children's hospital continue. Last week, the archbishop and a delegation from Tallaght Hospital had a meeting with the Minister for Health, Mary Harney, Minister of State for Health, Brian Lenihan, and chief executive of the HSE, Prof Brendan Drumm. The archbishop said there had been an admission that the taskforce report on locating the new hospital had been a "rushed job" and that it was "very apparent" that "no real thought at all had been given to the issue of governance".
Dr O'Ferrall accepts that the decision has been taken. But, he says, that is only the beginning of the process. "We would not want anyone to think that the Adelaide Society will sit back and accept dismemberment. This is a marathon, not a sprint."