ONE Wednesday morning last September a 45 year old woman died peacefully at her mother's home in Dublin. To the world at large she was known as the woman at the centre of the "right-to-die" case.

Earlier in the year her family had been given leave by the High Court and the Supreme Court to stop feeding her through a tube in her stomach.

These decisions had sparked off a controversy on the "right-to-die" issue, on the ethical obligations of doctors and nurses and on whether the nutrients the woman was receiving constituted nourishment or medical treatment.

With her death, the issues surrounding her tragic case seemed to have died too. But for her family, the debate is not over. In the hope that society will face these issues, the woman's mother has decided to tell her own story.

One of the most surprising elements of her story is the pressure put on the family after the Supreme Court judgment by the hospital which had argued in the High Court and the Supreme Court that the woman should knot be allowed die. The pressure came in the form of three letters urging the family to remove her as speedily as possible.

These letters were immensely distressing to a family at the end of their tether all the so because people in that hospital were giving an entirely different impression to reporters.

Journalists were told of the hospital's "huge empathy for the family" and that the staff of the hospital and the family remained "on good terms" right up to her departure.

Among the 500 or so letters and cards which the family received following her death, there is nothing from that hospital.

SHE WAS to become known to the public as the woman in the right to die. To me she was the daughter who was born on January 27th, 1950, a happy, healthy child and the third of my seven children.

She went to our local school in, Killiney until she was 12 when she moved to a new school which had opened in Cabinteely. She was one of the first pupils in the school and was quickly appointed bead girl.

She remained there, with the exception of a year in Ring College, Waterford, until she finished her Leaving Certificate and then she went to UCD to do a Social Science degree. Some of the friendships she made in Cabinteely and in UCD lasted until she died on September 20th, 1995.

She enjoyed her school and college days in spite of the exam regime which she tackled successfully. She made several trips to France and Spain, first as an exchange student and then as an au pair. These were fun packed times with the usual escapades of hitch hiking lifts and running out of money.

Having finished her degree, she got a job in the personnel department of Bord Failte. She spent six, to her, very exciting months there which included promotional trips to various workshops, in Galway and elsewhere, among" them a memorable trip to Bunratty Castle all very exciting for a young girl embarking on her career.

Life was good and, as a bonus, she had a steady relationship with a boyfriend. But all was soon to change, disastrously.

We had moved from Killiney into the city and she was living at, home, as were all my children with the occasional absence of those at boarding school and those who had qualified one as an accountant and one as a physiotherapist. She had had a skin problem and, on my advice, she consulted a well known dermatologist in Dublin at that time.

To my surprise, one day in April 1972, she came home from work and announced to me in the kitchen that she was going into hospital for an investigation the following Monday. It transpired that the dermatologist had referred her to an eminent obstetrician/gynaecologist who had recommended this investigation.

Knowing that a trip to Kerry with a group of Spanish tourists was coming up that weekend. I tried to persuade her to postpone the hospital visit until a more opportune time. She was adamant she hated hospitals or anything to do with them so she figured that the sooner she got it over with the better So much did she hate hospitals that when deciding which branch of social science she would pursue she opted for personnel management, as medical social work was bout" as far as she was concerned. She hated even the smell of a hospital.

Little did she know that the next 23 years of her life would be spent in hospitals of one sort or another.

The day after she told me about the medical investigation, I rang the gynaecologist to find out what exactly was involved. He told me it was a simple routine procedure an investigation to find out the cause of her skin complaint.

The doctor told me there was absolutely no danger in the procedure, except that attached to any anaesthetic that in fact, he would have no hesitation in recommending it to his own daughter.

On Monday April 24th, 1972, my daughter went into a city centre hospital. Her elder sister drove her in and went up with her to the ward. Going up in the lift my elder daughter asked her if the doctor had explained what was to happen. She said that he had, that, she did not listen, that she did not want to know, that "all I want to do is to get out of this place". These were her last words to her sister.

On the next morning, Tuesday, April 25th, 1972, I went in to see her. She was sitting up in bed in the gynaecological ward full of, sympathy for the other patients who had draining bags hanging from their beds.

We chatted and I said I would be in that evening she said not to bother as her girlfriends were coming in to see her also, I suspect, her boyfriend. That seemed all right to me and the nurse on the ward said I could come in the next day around midday and would most probably be able to take her home.

That was the last time my daughter spoke to me.

Next morning I went into the hospital at midday and went up to the ward. My daughter's bed was empty and the nurse told me she had not come back from theatre, but to ring up at about 5 o'clock and I would be told when to come for her. Later I realised that at that precise time, my daughter was fighting for her life in the operating theatre. I went home. At exactly 5 o'clock the phone rang. I picked it up. That phone call was to change my life and that of my husband and my family completely.

The gynaecologist was on the phone. He said my daughter was in a coma. She had had three cardiac arrests. She was not expected to survive the night.

I CALLED my son, a first year medical student, to the phone and asked him to speak to the doctor to make sure I had really heard what I thought I had heard. The doctor repeated the same thing to my son and when I spoke to him again he said I should get my husband and come into the hospital immediately.

I rang my husband, who said he could not come as he had a dental appointment. I said You had better cancel that appointment as the doctor says that our daughter is dying.

I left my son at home with my two youngest children though he was reluctant to let me drive as he could see I was in a state of shock. However, I got to my husband's office and we set off for the hospital. It was an unforgettable drive with evening rush hour traffic bumper to bumper all the way down Pearse Street and into the city centre mouth getting drier and drier all the time.

I arrived at that grim awful hospital the lift was out of order so we started to climb the stone staircase. Halfway up, I stopped I could not go any further my legs would not carry me. So I sat on the stone steps while my husband continued up to the "recovery room". There he found our daughter on a stretcher with tubes and monitors attached to various parts of her body and a young doctor patting her on the face saying "Wake up, wake up."

For us, she never woke up again. She was 22 years of age.

Also in the "recovery room was my daughter's consultant. My husband asked him what was going on. This he replied, "is not my wicket."

We later learned that this dismissive remark meant her cases had been transferred from his care to that of a neurologist.

After some time, my husband and a doctor came back to me where I was still sitting on the stone steps. The doctor explained that our daughter was in a coma and was not expected to live through the night.

Thus began my very unhappy relationship with the medical profession and with medical institutions.

We went home in a state of extreme shock. When we arrived, my youngest daughter, aged five, ran out to the car in terrible distress. "Mum," she announced, "the apple tart is all burnt." I had run out of the house in such a state I had left the dinner in the oven. This brought me back to earth very quickly.

In the meantime, my son had rung the gynaecologist again. He said my daughter's heart had stopped. They had resuscitated her twice and proceeded with the investigation before they abandoned it.

Later my brother in law, himself a doctor, contacted the gynaecologist but got little satisfaction. Even at that early stage, the responsibility was being put on the registrar anaesthetist the consultant anaesthetist had not been present at all.

To this day we have never received a satisfactory explanation as to why the extraordinary risk was taken of continuing with the investigation after her heart had stopped.

I desperately needed to find out what exactly had happened to my daughter and what was likely to happen to her. I have been told that on the morning after my daughter's catastrophe, a doctor spoke to me briefly on the landing but I have no memory of this.

What I do remember is being ignored and fobbed off, day after day and week after week.

I visited the hospital two or three times a day. Sometimes I had to bring one or two of the children and leave them in the car with their colouring books.

None of the doctors would talk to me. None of the nuns would talk to me. None of them ever said "sorry" to me.

I repeatedly asked to see a consultant but I was told the consultants were "not available". The only doctor who spoke to me was a young English registrar who was kind but had little information.

This refusal to talk to us added to the agony of what we were going through. I had thought the hospital would want to talk to me. I had even thought the gynaecologist would call to my house to explain in detail about what had happened. How naive can one be

When we went for a walk, my husband and I often found ourselves on a road where we knew some of the consultants in my daughter's case lived and we wondered if we should knock on their doors. But the medical ranks were 50 closed that we began to feel perhaps we were in the wrong and had no right to question these eminent men This, ability to close ranks made us begin to realise the immense power of the medical profession.

In desperation, I rang the home of the neurologist who had taken over my daughter's care. The neurologist, I was told, was having his dinner and could not be disturbed.

AT THE start, my daughter spent about 10 weeks in the intensive care unit. At first she was stiff, cold and rigid like a corpse. After several days she started to open her eyes and make jerky movements. She started to moan and cry and, as she gained strength, roar that is not an exaggerated term.

After some weeks, she was lifted into a chair but she had absolutely no head control and very spastic movements. It was immensely distressing.

Nothing remained of the daughter I knew except for her beautiful eyes and her lovely black hair.

I rang the hospital every morning before my husband left for work. Every morning the news was the same "No change." I continued to visit at least twice a day, still not having communication with doctor, nun or nurse.

Then the doctors' thinking seemed to shift from what to do for her to what to do with her.

With a minimum of consultation with us, she was moved from the acute hospital in which the tragedy had occurred to another hospital for long term care. I later learnt that the Mother General of the religious order which ran both hospitals stipulated that a bed must be found for her.

They started rehabilitation when she had stabilised somewhat. It had no effect whatsoever. They tried physiotherapy, speech therapy. Occupational therapy and hydrotherapy but she neither responded nor improved.

She received excellent nursing care. Although she had to be turned every two hours for the rest of her life, she never had a bed sore in 23 years. At a conservative estimate she was turned at least 100,000 times.

My daughter had no swallow reflex so she had a feeding tube (a nasogastric tube) put down her nose. This was changed at least every second day.

At first, the food made her vomit but the hospital worked, out a feeding formula which was used, with little change, for the next 20 years. She was also, doubly incontinent and completely spastic.

One day a few months later I went to see her as usual only to find her bed empty. I was, shocked and, in a panic, I asked what had happened. I was told she had been taken to a neurological hospital for a brain scan This angered me as it had been made very clear to myself and my" husband that nothing would be done without our prior, knowledge.

Our solicitor complained to the director of my daughter's hospital but received a very curt reply to the effect that if the parents were not happy with the treatment that their daughter was receiving, they could move her elsewhere.

Panic set in what would we do if she was put out of the hospital.

Looking back, it seems to me that we were being made to feel at fault, instead of the medical profession who had put my daughter into her appalling situation in the first place.

We could not find a doctor to tell us the result of the brain scan. I vividly remember running around the hospital after the doctor in charge of my daughter's ward. I finally caught up with him in the car park. He told me I must speak to the hospital director.

The director summoned us to a meeting. Also present were the doctor in charge of my daughter's ward and the ward sister. The director told me bluntly that my daughter had global, irreversible brain damage. She would never walk, talk or have any movement except spastic reflex reactions. This would never change.

By now her legs were bent up into her body so the doctors operated to straighten them and make them rigid.

The hospital slowly stopped all the rehabilitation therapies. She was not to leave the bed for the next 20 years, except for bathing.

My husband and I decided we must find out what had happened to our daughter on April 26th, 1972. We began a legal action against the gynaecologist and the anaesthetist.

Our case was listed for hearing in 1974 but it never came to court. The doctors offered a settlement when we arrived for the hearing. We rejected it because we wanted to know what had happened to our daughter and we believed a full hearing was the only means of finding this out. But the doctors said through their lawyers that if we went into court they would accept liability and there would be no hearing.

It is important to understand that the first time I saw these doctors was when they were pointed out to me in the Round Hall of the Four Courts. That, too, is where I first saw the matron and the Reverend Mother of the hospital.

That is a measure of the extent to which we had been ignored in our efforts to come to terms with what had happened.

Across the floor of the Round Hall there now took place an exhausting session of what can only be called "horse trading". This was the most painful experience to date.

Finally, a financial settlement was agreed it was because of this that my daughter was made a ward of court. In addition, we were to have a meeting in private with the doctors and our anaesthetics expert from Liverpool (we had failed to find an Irish anaesthetist to help us) to find out what actually happened in the operating theatre.

AT THAT meeting in the Four Courts, a minimums of information was given to us. It was a hurriedly arranged meeting at the end of an exhausting day, we had had no time to prepare for it and we left it no wiser than when we went into it.

Our agony and that is what it was continued. I visited her every day at first. With a young family to look after, this was no simple matter. I learnt to use the timer on my cooker I set it before going out every afternoon for the dinner to be ready on my return. The family was wonderful, visited as often as they could, helped out at home and tried to get on with life.

I have often been asked how I managed all those years. My answer was that I had a husband and six other children to look after so I just got on with it.

Twenty three years went by my other children passed through school, got qualifications and got their careers sorted out.

Two decades passed without another formal meeting with the hospital staff Over the years I used to meet the director doing his rounds and all he would say apart from pleasantries was "she is holding her own". I never quite knew what that meant.

I had been told at that first meeting that my daughter's life expectancy had been estimated by two neurologists at between five and 10 years. I was told the illnesses she was likely to get would be chest and urinary tract infections and these would be treated with antibiotics according to the ethic of the hospital.

She was to become known as the director's "penicillin patient", so often was she treated for infections over the year aggressive treatment with antibiotics occurred on at least several hundred occasions. If I had been asked for my view, which I wash not I would have said that those infections should not have been treated. My daughter should have been allowed to die.

After three years and many many infections, she got a bout of pneumonia from which she was expected to die. I asked my sister to make a white nightie for her to be buried in. That was 1975 and the nightie lay in my drawer for 20 years.

In the early years she bit her lips and gums so badly that she had to have blocks put on her back teeth. This involved another general anaesthetic.

She moaned and groaned and slept and cried she never made any attempt at communication. She only stared and stared and moved her head very slowly from one side to another. There was absolutely no pattern to her "behaviour".

The nurses were wonderful and grew very fond of her.

In 23 years of constant and regular visiting, I got no response from her. For all that time she was fed through a nasogastric tube which, after two decades, seemed to cause her intense irritation. On occasions, the tube had to be replaced four to five times in one night. Over the years it was replaced thousands of times.

The doctors suggested that a gastrostomy tube be inserted that is a tube which feeds directly into the stomach through a hole cut in the stomach wall under general anaesthetic. No alternatives were suggested by doctors and no one seemed to be prepared to look at the situation and say, "What are we doing here?"

I felt I had no option and very reluctantly agreed to the operation to insert a tube.

About this time, I became aware of the Tony Bland case in England and began reading a lot of literature about it. He had suffered global, irreversible brain damage in the Hillsborough Stadium disaster. The courts ruled that a feeding tube which had been keeping him alive could be withdrawn. I had been aware of the similar Karen Quinlan case in the United States in 1974 and a number of subsequent cases there.

An article in the Tablet impressed me greatly. In it, Father, Kevin Kelly, a Catholic moral theologian, argued its was merely permissible to withdraw the feeding tube and to allow Tony Bland to die, not of starvation but of his original pathology an inability's swallow resulting from global reversible brain damage.

MY husband had died in 1988 so, with the help of my family, I embarked upon the task of trying to convince the director of the hospital to at least agree not to give my daughter any further antibiotics when she got her next infection. He refused Antibiotics would be administered and indeed they were, with, every infection and there were many.

As for withdrawing the tube or not replacing it when it came out, "you would not do it to a dog" murder, euthanasia.

We were told my daughter was in calm waters" this description of her was a far cry from the woman I visited so frequently and who, on many occasions, seemed to be in great distress.

Following two unsatisfactory meetings, I and my family decided to look elsewhere.

After much agonising, heart searching and inquiries, I approached another institution which agreed to take her. Looking for, finding and gaining acceptance into this new institution took about a year.

Here too, my daughter was diagnosed as being in a permanent vegetative state (PVS) by the doctor under whose care she was to be. This was the same diagnosis as had finally been made in her previous hospital. On a number of occasions we were informed that, with only palliative care, she would probably not live a year.

I thought there was an agreement with the institution that aggressive treatments would not be given and, when she developed an infection, there would be "a pause and a reassessment" of her care.

I am afraid there was a misunderstanding here. I thought "no aggressive treatment" and "letting nature lake its course" meant there would be no antibiotics and, when the tube came out, my daughter would be allowed to die.

How wrong I was The treatment in this institution was exactly the same as in the other. Although it was run by a different religious order, the ethic was just the same.

There was wonderful nursing once more but no one was prep pared to consider the futility of the whole exercise the indignity caused to my daughter and the strain on me and my family.

About two months after she had been admitted to the institution, I returned home one afternoon to find a message on my answering machine. It told me to ring yet another hospital as a matter of urgency. This I did and was told by a young registrar that my daughter, was in that hospital now and another tube was being inserted under general anaesthetic.

I was horrified this was the first time I had heard that the tube had come out at all. I found out later the tube had come out the previous day, she had been taken to the hospital and another tube had been inserted under local anaesthetic.

The next day it had come out, again and she was taken back to the hospital and this time the surgeon realised that it required a" general anaesthetic as she was rigid and spastic. My consent had to be given to administer the general anaesthetic.

I argued with the young registrar, saying I did not want the tube replaced. He did not understand what I was talking about, reiterating it was a simple procedure. I had heard this many times before, but to me it was not the point.

Eventually, I felt I had no choice but to give in. Once more I had been forced into an impossible position by the medical profession.

I tried to contact my daughter's doctor in the institution only to find he was out on calls but, after about 15, minutes I tracked him down. To my disbelief, he could not understand why I was so upset nor could he understand that to me, this was an opportunity to reassess the situation and decide on a different approach. We were unable to communicate with one another.

By now I was convinced that the right thing for my daughter was to allow her to die. I contacted a moral theologian who, after due research and study, was most supportive of the decision I had made.

I asked for a meeting with the institution to say how upset I was at the various treatments which were given without my knowledge and also the fact that she had been moved to another hospital twice without my consent.

This started a series of meetings between various members of my family and the institution. The theologian who was helping us attended every meeting at my request.

It became clear that, contrary to what I had understood originally, the doctor was not prepared to change his stance. Antibiotics were administered for any infections and the tube would be replaced every time it came out.

Our last meeting became very confrontational, I am sorry to say, and we left saying the only recourse left to us was to seek legal advice. This is where I am sure the Lord intervened. We found a wonderful solicitor and an equally courageous counsel a great legal team.

Between us we read, researched and sought out as much data as possible on PVS and similar cases to ours, and the church's view in England, the United States, Australia and New Zealand.

I spoke to six of the most eminent moral theologians in Ireland Three agreed with the line we, were pursuing two agreed to testify on our behalf in court two' were ambivalent and one was against what we proposed.

Our visits to my daughter became a terrible strain. It seemed's nobody in the institution wanted to talk to us or have anything to, do with us. When we asked for information about my daughter's treatment, we were told to go through our solicitors.

The rest is well known. We spent five days in the High Court in April 1995. Our counsel was opposed by the institution, the Attorney General and the Guardian ad Litem (arguing against our case). The court made an unexpected judgment in our favour in May.

There followed the inevitable appeal by the Attorney General, which was supported by the institution and the Guardian ad Litem, now arguing "for life".

We spent another five days in the Supreme Court in the summer of 1995 and the legal battle came to an end in July when the court returned a decision in our favour by a 4-1 majority.

WE FELT we had overcome the greatest hurdle I had been told that what I knew to be morally right was legally correct also. I immediately began to look for an institution to take my daughter in order to allow her to die. I had no trouble finding a nursing home, nurses and a doctor. We in fact had found several doctors who had no moral or ethical objection to what we wished to do.

Here, however, the medical profession intervened once again to block our way. In August, the ethics committee of the Irish Medical Council issued a statement saying it would not be changing its guidelines as a result of the Supreme Court judgment. The statement was unclear but seemed to mean that any doctor taking part in the removal of a feeding tube would be heavily censured.

An Bord Altranais came out with a similar statement.

All medical doors were once again closed to us the doctors, nurses and nursing homes which had been in agreement retreated for fear of censure.

We spent the next month arguing with the ethics committee which refused to clarity of modify its statement and ringing around the country seeking doctors, nurses and an institution to take my daughter. It was all to no avail. The medical ranks had closed once more.

At the same time, the institution was putting great pressure on me to remove my daughter. I received three letters in succession saying it was a matter of urgency that my daughter be removed.

The institution knew at that stage we were at an impasse. In desperation, we had contacted a doctor in England who was prepared to come over to assist us and we had nurses lined up to, come down from Belfast?

I was at the very end of my tether when an Irish doctor with the courage of his convictions agreed to help us and take my daughter as his patient. Soon after that, things began to fall into place eight nurses volunteered to care for her.

We still had nowhere to take her. Should we rent a house? Should we go down the country for fear of being hounded by so called "do-gooders". The Lord intervened once again as I reasoned to myself that if any of my other children were ill, I would naturally have brought them home.

Therefore I decided to bring my daughter home to die.

All of this involved a huge amount of organisation getting, medical supplies, the nurses getting time off work and rearranging the house etc. My other children came home from the United States, Australia, England, Cavan and Cork. We rented and moved into another house to accommodate some of the family and my home became a temporary nursing home.

However, the medical profession had one or two other obstacles to put in our way. I requested to see my daughter's doctor to ascertain what medication she was receiving before she came home. He replied that he would discuss this with the doctor into whose care my daughter was being transferred. This I refused to comply with because of the possible consequences for the doctor who had agreed to help us.

The final compromise was that a list of medications would be handed to my son, who is a doctor in practice in England, on the morning she was to be moved. The same applied to the nursing notes one of my daughters who is a nurse would be able to collect them.

The next instruction we received from the institution was that no one could go up to the ward with the ambulance attendants when my daughter was being moved.

This was outrageous I had always gone with my daughter previously when I knew she was being moved. All of these instructions were coming through our solicitor on the morning it was planned to move her.

For fear that we would be further hampered, I asked my solicitor to be present at the institution when the move was to take place.

I and my youngest daughter went up to the ward and sat with my daughter for about 20 minutes before the move.

My daughter the nurse accompanied the ambulance attendants to the ward while my son received the medical notes in the administrator's office downstairs in the company of our solicitor.

I did not see my daughter's doctor. By chance, I did see the matron and a staff nurse, briefly.

The ambulance men were gentle and discreet they asked no questions. Later, they wrote to say "Thank you for placing your trust in our service."

We brought my daughter home amid secrecy and trauma for my whole family. Our great fear was that the media might get wind of her removal through a leak there had been earlier leaks from people in the institution. That in turn might lead to protests from the so called "do gooders", something we could do without given the strain we were under a strain which it is hard to exaggerate.

When the ambulance arrived at our house, the nurses were ready to receive her and from then on, she had 24 hour nursing by a team of SRNs, helpers and family members. Once we had my daughter in my house it seemed as though a great calm descended on us. There was great sadness too but it was accompanied by peace we felt that, at last, we were in control.

My theologian friend arrived soon and conducted a "welcome home" service for her at which we were all present.

She was visited by members of the family and friends and also by priests, including my parish priest, and Mass was celebrated in her bedroom on the Sunday. It was an extremely sad and stressful time for me and my family. Many, many tears were shed but we knew we had made the right decision.

My daughter lay in bed quietly, just staring and sleeping. There was hardly even the slightest moan. She breathed regularly, her breath getting more and more shallow as the days went by.

Her carers were gentleness itself to quote one of the nurses "We were honoured to be able to share in the care of during her final days." No praise is too high for her doctor and those eight nurses who voluntarily looked after her daily and risked censure by their various medical ethics bodies.

On the morning of the eighth day, she simply stopped breathing. I can say, without fear of contradiction, that her eight days of dying were more peaceful than the previous 23 years of so called living.

Since my daughter died on September 20th last, I have written three letters to the medical ethics committee requesting that it address the implications of the Supreme Court judgment. I have received acknowledgments of receipt of my letters from the registrar nothing more.

In a private capacity, I have received apologies from two Irish doctors on behalf of their profession.

I have received no communication whatsoever from any of the institutions in which my daughter spent over 23 years.