ON WEDNESDAY, a funeral cortege stopped outside the Department of Health headquarters in Dublin. It was that of Alan Duffy, a young man who had been in a vegetative state for over 20 years since he was given the whooping cough vaccine as a baby. It was a gesture of grief and anger by his parents. A death, especially the untimely death of someone who should be at the prime of life, is always a cause of hurt and rage, a vague but powerful sense that some terrible mistake has been made, that a blank and ignorant fate has worked a cruel trick for unknown reasons.
In Alan Duffy's case, that great hurt in the face of an uncaring universe had a local habitation and a name. His parents believed that his life had been destroyed by the vaccine, and they wanted an acknowledgment from the Department that this was the case.
We all instinctively understand their need. In logic, the fact that someone you loved is dead should be enough, the why and the wherefore insignificant. But this is never so. We all know exactly why the families of dead fishermen need the bodies to be found. We know why the families of murder victims attend the trial of the murderer, so that they can see and hear and try to understand the circumstances of the death.
Just as a child seems to exist fully only when it has been named, so the naming of illnesses, the ability to pronounce the cause of death, is hugely important.
The Duffys' gesture of anger at the absence of information and acknowledgment with regard to their son was a dramatic one but, in smaller and less public ways, their feelings are shared by very many people who, either as patients or as family and friends of patients, find themselves in the midst of a medical crisis. For the most part, the medical establishment, for all the skill and knowledge that it possesses, has been unable to understand those feelings.
Recently, a friend of mine was a patient in a Dublin hospital. One day, he was to begin a course of physiotherapy. He was taken from his bed, put in a wheelchair and pushed along the corridors to the physiotherapy rooms. Because it was to be his first session, his file had to go with him.
As it was difficult for the porter both to wheel the chair and carry the file, it was placed on my friend's knees. Across the cover, in bold letters, were the words "Not to be Seen by the Patient". He was upset and angered by this blatant statement that a 40 year old man could not be trusted with information about his own body.
He told the porter that he was going to read the file, but the porter pleaded with him not to do so. If the hospital found out he said, he would be sacked. So my friend had to sit there and collude with his own ignorance.
THIS experience is not unusual. It is hard, indeed, to find anyone who has had prolonged contact with hospitals who has not at some time encountered a consultant who is annoyed by detailed questions, who resents the patient or family member who has read books or articles about their condition. Many individual doctors take a completely different attitude, but the system as a whole still encourages a feeling that knowledge belongs only on one side the professional side of the medical relationship.
Yet those days are over and the sooner the medical establishment recognises this fact the better They are over because of two quintessential phenomena of the end of the 20th century AIDS and the Internet. When it hit gays in America, AIDS became the first new epidemic to break out in a community with a large presence of relatively wealthy and well educated people.
These people responded to the early years of ignorance, bigotry and secrecy on the part of the political and medical establishments by forming new kinds of networks in which medical information and political lobbying went hand in hand.
Those networks are now international, available to people anywhere who have the money and the education to take advantage of them. The result is that HIV positive people in Ireland can have access, through Project Inform in San Francisco or the Terence Higgins Trust in London, to the very latest information about drugs and treatments. They can, in effect, know as much as their doctors do and this, in turn, has had a huge effect on the relationship between doctors and AIDS patients. The black arts of obscurantism and fobbing off have all but gone out of use in this one corner of medicine.
The model developed by HIV positive people has since been adapted in many other fields, with the Positive Action group of people infected with Hepatitis C being the most obvious Irish example. But it has also been made infinitely available through the Internet.
Another friend of mine recently accompanied her brother to an appointment with a consultant armed with a list of questions based on information she had received through the Internet about developments in Canada in the treatment of his particular illness. In the event, the consultant had never heard of these developments and was outraged at her presumption. But doctors are going to have to face the fact that an increasing number of patients have both the desire to understand what is happening to them and the means to fulfil that desire independently.
ONE OF the oldest encounters in human history, that between the fearful, grateful and humble patient and the godlike, awesome doctor, an initiate into sacred mysteries of life and death, is on the way out. The kind of absolute obedience on the part of patients, so starkly illustrated in the recent case in Cork where a doctor took video pictures of naked female patients, cannot survive.
Increasingly in the developed world, patients and their families will be asking informed questions. Why are you not prescribing a different drug that doesn't have these side effects? Why have you not done this test? What do you think of this new procedure? All of this will become much more specific and pointed if and when the Freedom of Information Act is extended to hospitals.
If it is no longer possible to write "Not to be Seen by the Patient" on the cover of a file, a whole set of attitudes that have been unquestioned for centuries will become untenable.
The consequences of all of this can take shape in two starkly different ways. Either the medical profession and the health industry resent these "intrusions" by nosy patients and become even more defensive than they are at the moment, in which case we will see more conflict in the consulting rooms, resulting in more and more medical litigation in the courts, or they recognise that change is not merely inevitable but also healthy in both the literal and figurative sense.
The lead given by the Department of Health may well determine which of these routes is followed. And the best way for it to start would be with a determination that never again will a hearse stop at its own front door seeking an acknowledgment in death that was denied in life.