The poor girl’s parents complained that they were given little or no explanation as to what had happened, why it had happened, what they were to expect or what the future would hold for their lovely daughter.
And so this once bright and beautiful young woman lay on a hospital bed sometimes on the flat of her back staring, perhaps unseeingly, up at the ceiling, totally paralysed and motionless except for her steady breathing and the darting movements of her eyes. Her carers had to turn her from one side onto the other to prevent her from developing pressure sores. She had no speech. She was unable to swallow. She could give no signal of thought or feeling other than an occasional despairing moan. She was trapped in her frozen world of deep unconsciousness, alive but unable to move, with no evidence of awareness of self or environment. Her wakeful unconsciousness had no real prospects of any meaningful recovery. To be kept in this state her minders had to insert a urinary catheter into her bladder and a naso-gastric tube down into her stomach through which she was to be fed and hydrated three times a day with a tasteless nutritious soup.
In the very best of medical institutions where highly trained and skilful surgeons and anaesthetists work with the best of nursing staff and where superb ancilliary help is available these things do and will happen. These are the rare but real complications of general anaesthesia. It would be very wrong of me to attempt the proportioning of any blame to anyone in this awful case. Any doctor, even the very best and kindest of them can find themselves in a situation where someone they are trying to help takes a turn for the worse and is left, by complications of treatments, much worse off than they were pre-treatment. Most of us have found ourselves in that situation at least once in a long, active, professional life. It is very much a case of ‘there but for the grace of God go I’ and I do not wish to be seen as smug or as pointing the finger at anyone. But I have talked at length to the mother of this young woman and it is clear from my conversations with her that the real problem lay, not so much in the awful tragedy itself, but rather in the lack of any meaningful communications between carers and relatives.
I am not suggesting for one minute that the management of near PVS is simple and straightforward because it is no such thing. Diagnosis can never be absolute and prognosis is always fraught and uncertain. People have been in these states for several years and been known to recover at least partially. But today we know that the relatives of the person in a PVS simply have to be brought into the equation. In as far as possible an explanation should be given as to why it happened and what, if anything, went wrong. There must be no attempt at a cover-up or of anything that might be construed as a cover-up. In addition to this the relatives must be involved in a management strategy and in the decision-making as to how long treatment should go on and to what lengths they should go to keep the sufferer alive. But in this case none of this happened. The young woman’s parents were kept in the dark and excluded from all decision-making.
On several occasions the patient developed urinary tract infections as a result of her having to have an in-dwelling catheter. Each of these was treated with antibiotics without discussing it with the family. After twenty years it was decided to insert a gastrostomy feeding tube under general anaesthetic. This was done without discussion with the family. This tube fell out on two occasions and was replaced again without reference to the family. But what was worst of all is that on no occasion were the parents and siblings of the young woman brought into a room and sat down and allowed to express their concerns and to be given a chance to have an input into an overall treatment plan that might envisage eventual closure. That simply never happened. The carers’ only plan was to keep the patient alive for as long as ever possible. They claimed to have had an ethical duty to do so.
The family eventually felt that they had no option but to seek legal advice. The first thing they were advised to do was to make the young lady a ward of court. As a ward of court her future would be decided, not by the carers anymore, nor by the family but by the courts of the land. Or, in other words, the courts would stand in loco parentis and decide what was the best line of action, what was in the patient’s best interests – to go on being fed and hydrated through the artificial means of a gastrostomy tube or to allow for the discontinuation of this method of forced feeding and allow the patient to die? The request to make the patient a ward of court was granted in 1994. From here on in, during court hearings, she was to be referred to simply as ‘the ward’.
The next High Court hearing was held in-camera during May 1995 and on 10 May Justice Lynch delivered his verdict, the essence of which was as follows:
– Allow for the discontinuation of feeding via the gastrostomy or naso-gastric tube.
– Allow for the non-treatment of infections and other pathological condition save where pain relief might be required.
– Authorise the family to move the ward to another institution where withholding nutrition was not held to be unethical.
But the carers and the institution where the ward was being cared for decided to appeal this High Court decision to the Supreme Court. On 27 July the Supreme Court delivered its verdict which was essentially to uphold the High Court decision from earlier that summer. I attended all of this hearing as a medical journalist with the Irish Medical News and it was at this stage that I first became aware of the family and the long tortuous journey that they had all made over the previous twenty-three painful years. And it wasn’t over yet.
After all of this, having had to watch their precious daughter or sister suffer on needlessly for twenty-three long and agonising years at the hands of well-meaning if somewhat blinkered carers, having made her a ward of court and then going through the distress of a High Court hearing followed by an equally stressful Supreme Court hearing, after all of this they were still not out of the woods. No, now they could not find an institution that would take on the case and carry out the legal discontinuation of the tube feeding. Nobody wanted to know about it. It was at this stage that the ward’s mother, to know if I might be able to help through my good offices at Clane General Hospital, approached me.
To be honest I did not want to ask my colleagues in Clane Hospital to do something that they may not have been comfortable with or to put them in a position where they may have had to say no. In any case at this stage both the family and I were coming to the same conclusion. The only way and the kindest way forwards was to bring the patient back to her own home where I was to remove the gastrostomy tube and allow her to die surrounded by her loving family. And that’s what happened but it wasn’t before there was to be a final glitch, this time emanating from the Medical Council.
This whole right to die case attracted huge media attention as you can imagine. In the immediate aftermath of the Supreme Court ruling journalists approached some of the more conservative members of the council’s ‘fitness to practice’ committee. At least one of them, speaking I think to be fair about it on his own behalf, opined that any doctor who would co-operate in the discontinuation of nutritional support for the ward might be deemed guilty of serious professional misconduct and be struck off the register. But I had to balance these kinds of threatening rumbles coming from high quarters with the facts on the ground as I saw them at the time. Those facts were that here was a mother and family who had suffered twenty-three years of the most terrible anguish and pain imaginable, largely at the hands of the medical profession. Now the highest court in the land had at last declared it legal to bring closure and peace and an end to their suffering. If there was anything I could do to help them then I felt duty bound to do so.
Three days after I deflated the retaining balloon and with shaking hand withdrew the gastrostomy feeding tube from deep inside the comatose woman’s abdomen, she passed away peacefully and quietly, surrounded by her family and those fantastic nurses who lovingly and so professionally cared for her during her final hours. May she rest in peace.
* * *
My children are now adults living independent lives
away from home while Joan and I happily rattle around in this hopelessly impractical old Georgian house. I have sold my general practice to younger blood. At this stage vasectomy has become more or less a full-time job and I certainly do not need the stress and hassle of GP work anymore. People are congratulating me on my ‘retirement’ and I am at pains to point out that, just because I have given up general practice, this does not at all mean that I have retired. In fact I do not believe in or like the concept of retirement and believe that a man needs to have a good reason to get out of bed every morning. It’s either work or wilt and I’d prefer to work. So when well-meaning people congratulate me while mistakenly thinking that I had gone and done something that, as it happens, I do not believe in, they are in effect being mildly offensive – without meaning to be of course.
During the twenty-five years that I served in it, general practice underwent some massive changes. It became a speciality in its own right requiring aspirants to undertake a three-year post-graduate course ending with a membership examination. We are all members of the Irish College of General Practitioners, and sport MICGP after our names. In addition to this general practitioners these days tend to practise within group practices and single-handed practices have now become the exception. This is the very opposite to the way that things were when I set up practice in Kildare on my return from Canada in 1974. Then, single-handed practices were the norm, co-operation among GPs was at best very poor and competition for private patients quite fierce.
Now it is all sweetness and light. Every county has its own GP co-op – an arrangement whereby doctors in any given area cover for each other at nights and weekends. This should add enormously to the quality of general practitioners’ personal lives because they can now go to bed at night and know that they are going to get a decent night’s sleep. They can go away at weekends or take their children to the beach or climb a mountain and do all these things without the worry that one of their patients may need medical attention in their absence. They are no longer nailed to their practices as we were ten or fifteen years ago. In the bad old days I would be dragged out of my warm winter bed night after night to attend to an asthmatic child or to an old lady who had fallen out of bed or to a couple who had decided to have a good old domestic barney with lots of drink on board too, of course. And the next day I was expected to be fresh and well and all smiles and sympathy throughout a busy day’s surgery. And this might go on week in week out for anything up to six months without a break.
That style of general practice is dead and buried and good riddance to it. I say the new order of things, the co-ops, the group practice, the absence of any real competition for private patients, should add enormously to the quality of a GP’s personal life. But somehow or other this does not seem to have happened. Other extraneous changes have taken place in the meantime that have negated the internal improvements made in the organisation of community general practices.
The first five years of the new millennium have witnessed quite extraordinary growth and development in the Irish economy and infrastructure. We now have full employment but house prices and mortgages are so high that both parents have to work in order to pay for their lifestyles. They put their infants into crèches and feel guilty about it. They bring their babies to the doctor, not because there is anything wrong with their baby but because they want to assuage their guilt for leaving him or her in a crèche all week. They are assertive, stressed, rude, litigious and computer-literate. People who have done a full internet search before coming to see their GP offer a new challenge. The doctor–patient relationship has changed for all time. The authority of, and respect for, medicine have both gone out the window. Now doctors are on their guard all the time and practising defensive medicine, doing unnecessary laboratory tests just to cover them in the event of litigation. And on top of all that the health services are in such a shambles that it is extremely difficult to get the genuinely sick and urgent cases seen to within a chaotic hospital system.
Such are the stresses and strains and lack of job satisfaction within general practice these days that new recruits to the discipline are hard to find, general practitioners are retiring earlier and there is now a manpower crisis looming in general practice. This is reflected in the fact that many practices have a two or three-day waiting list of patients for non-urgent cases. In my day we didn’t even have an appointment system never mind a waiting list of people wanting to come and see you. Changed times indeed from when not so long ago general practitioners would be fighting with each other for stealing ‘my patients away from me’!
Clane General Hospital, now in its twentieth year of existence, goes from strength to strength. Even the long-suffering shareholders are happy campers these days because they are in receipt of modest but real annual dividends. A four-million euro extension has just been added to house an MRI and CT scanner along with the many new medical and surgical consultants who have joined us in the recent past. We have an assisted-fertility clinic or IVF unit that is one of the busiest in the country and knee and hip joint replacement surgery has now also been introduced. This is for us a quantum leap forward and brings the whole profile of Clane Hospital up several notches. The place is now vibrant, complete and self-sufficient and I am very proud to have been part of it all through the years. For me at any rate it has gone from a dream, when I first conceived the idea, to a nightmare when we struggled so painfully to survive those dreadful early years wondering where our next penny might come from and how long would it be before the banks foreclosed on us. Then it went back to a dream again when we turned the corner and the whole concept became sustainable, cheerful and even profitable.
* * *
I have taken a keen interest in the subject of ‘andropause’ or more properly the testosterone deficiency syndrome. All men as they grow older lose their high youthful testosterone levels at a rate of about one per cent per annum. This steady age-related decline in testosterone levels means that by the time a man reaches the age of say seventy or seventy-five he can expect that his testosterone levels will have fallen to less than half of what they were when he was a young man of twenty-one. The question then is this: does this steady natural age-related decline in male hormone levels have any adverse effects on the ageing man and, if it has, is it safe and effective to treat this decline with testosterone replacement therapy? The medical profession is divided on these questions. At the moment there are at least three schools of thought and more research will need to be undertaken before definitive answers can be reached.
The conservative doctors will say that by and large there are no ill effects to this decline in male hormones and even if there were it would be most unsafe to treat them. The majority of medics would I think acknowledge that falling testosterone levels is accompanied by some symptomatology but that this was not worth treating or the potential risks of treating with HRT were such as to make this treatment unwise. And then of course there are the more liberal of us who say that in a minority of men this decline in testosterone levels can produce quality-of-life-reducing symptoms and that in these cases hormone replacement therapy for men is not only justifiable but may also indeed be good medical practice. Opinion is as diverse as that. It has more to do with belief systems than with hard medical facts.
In the meantime however, because I deal with them on a daily basis, I am strongly of the opinion that at least some men do suffer from the consequences of age-related falling testosterone levels and that some of these adverse effects may be reversed by the application of testosterone replacement therapy. Symptoms most commonly encountered are:
• Loss of libido or sex drive
• Erectile dysfunction or impotence
• Increased belly fat and loss of muscle mass and strength
• Lethargy and mild depression
• Osteoporosis and easily fractured bones
• Senile dementia and arteriosclerosis – coronary artery disease.
Before a man can be considered as a candi
date for hormone replacement it is essential that his prostate gland be checked for early cancer. This is best done by a blood test known as PSA. Once this is in order it is safe to give him a trial of testosterone replacement. These days this is best given as an intermusclear long-acting injection called Nebido and given every twelve weeks. If after say three of these the man notices no difference at all then therapy should be discontinued. If, as is more likely the case, the man feels better all round then therapy may be continued while keeping an eye on his PSA.
* * *
I am taking a legal action against the state for deliberately poisoning my drinking water. Ever since 1965, when the Health (Fluoridation of Water Supplies) Act 1960 came into law, all public drinking water supplies in Ireland have been fluoridated at a rate of one part per million of fluoride to water. Every county council right across the country is duty bound to add in this fluoride at source, that is at their water treatment plants. They are statutory-bound to do this whether they like it or not and a recent survey indicated that many of them do not like it one little bit and, given the option, they would prefer to discontinue the practice. But they have no option; the law says that they must add in the fluoride to the nation’s drinking water supply.
Another statutory body called the Irish Medicines Board defines a medicine as ‘any product given to treat, or prevent or diagnose a disease’. Fluoride is given to the Irish population to supposedly prevent or reduce the incidence of a disease called dental caries or tooth decay. Therefore, according to the Irish Medicines Board’s own definition of a medicinal product, fluoride is a medicine. Since another duty of the board is to regulate the granting of product authorisation for medicinal products and since fluoride carries no such product authorisation, fluoride is therefore not only a medicine but also, worse still, it is an unlicensed medicine.
The Vasectomy Doctor Page 18
