Child 'tissues' - January 2001
A report has been published castigating the medical profession, and in particular the pathology profession for the very inappropriate ways in which they have obtained and preserved what they chose to call 'tissues' following the death of children in the care of the hospital. There has been some rather gruesome hand wringing from ministers, but I think that many commentators have failed to see some of the real underlining underlining issues.
First, may I be clear that I speak from a personal stance. My own daughter died in 1984. It is clear that she would have died without medical intervention, and it is clear tha no amount of medical intervention would have significantly extended her life. Instead however the medical profession chose to intervene. The result was the very direct causing of quite unbelievable pain for her for three or so months before her death. Without that intervention she would have died. With it she still died, but in the most gruesome of ways. This was some 15 years ago and my anger had dissipated, but listening to some of the doctors' comments after the the Alder Hey report, I have felt some of that anger again.
For a child to die, something fundamental has gone wrong with the world. A parent should die before their child, and for this not have happened, teh feeling is inevitably that the parent has failed. That failure it is completely disempowering. In this context, the parent will try to do whatever he or she can under any circumstances, to save the child.
The love we have for a child is direct, simple, unmixed, and pure. After the death of a child, the only possible thing the parents can do is to preserve whatever dignity is left by some form of taking care of the child's burial.
Over the years, I have met many parents whose children have died. And when we each come to know this fact about the other, there is an immediate bond of understanding. There is no need to dissemble, no need to hide the pain, no need to seek to explain. We recognise the depths of despair which we have each visited, and which depths are completely unimagined for those who have not experienced it. For the sake of simplicity, I have two lives. One life before my daughter died, and a second and quite distinct life now. Many things linked the two, but the fundamentals are different.
Against this background, comes the additional lack of respect, lack of feeling, condescension, of those who have felt free to remove tissues, by which very main sometimes the almost every organ of substance in the body, and post-mortem.
Something remains unclear from the report and commentary. First what is crystal clear is that many post-mortems appeared to be being carried out for no purpose other than this harvesting of organs. The reports which might accompay a bona fide post mortem were not prpared. Second, there has been the pretence that such organs would be used for research and education. What is quite clear from the report is that in fact that there has been almost no such use of the vast majority of the organs removed.
When I was a child, I collected postage stamps. I collected them, satisfying the need to sometimes acquire "a full set". In practice, the purpose of collecting things is often subordinated to the feelings and emotions involved in the act of collecting.
I know that none of the organs of my daughter were used in this way. I now understand two or three comments made to me that the time, by the undertaker and by a doctor, about the blessing of her having died at home. She died at home, there was no post-mortem, and I know that at the funeral we dealt with all of her. Nevertheless, I feel for the parents of those treated in this way.
It is comforting for the pathology profession and for the government to £ 1 figure is to make a point the finger. This doctor, they say, is evil. By doing so, they avoid having to answer other questions about the approach of the profession as a whole. The
We are told that we shall be able to rely in future on the benefit of what is called 'informed consent'. At the time of my daughter's illness, I had to enter as a trespasser, Leeds University medical library, in order to obtain information about my daughter's condition. She suffered a very rare form of brain tumour. In this particular form, there were only two reports of similar conditions in the literature since the Second World War. Having studied before, one comes to know that one has found almost everything when one finds an article reads it, writes down references, traces each references, and again, and again, until each article only refers to articles one has already found. That level of knowledge was an immediate source of discomfort to the doctors. One doctor, proposing an operation which we opposed, described my daughter's brain tumour as "exquisitely rare". It was an obscene comment. We were given one prognosis. We refused consent. There was a hasty collaboration between senior consultants, at different hospitals, and four hours later we were given a different prognosis. It was a prognosis which was not justified by reference to the literature or anything we had been told about my daughter's condition. It was quite simply made up. The prognosis suggested that our daughter might survive if she had the operation.
I remember writing a one page note which I attached to the consent form, which indicated that I did not believe what is being said. Nevertheless, as we all know, a doctor's diagnosis and particularly that of a senior consultant in oncology, was hard to challenge. Informed consent is not a simple idea.
My daughter had the operation. The doctor opened the skull, discovered that the situation was far worse than he imagined, and in the words of the registrar afterwards, he stuffed it all back' and sought to seal up the skull. The result was that the skull had a flap. Over the next three months, the broken bone would begin to mend. The tumour would grow. It would lead to greater pressure in the skull, and she sank into unconsciousness. As the skull pressure increased, the the skull fractured again, and, just as the pain was at its most intense, she would awaken. This happened five times. we nursed her 24 hours a day. She received painkillers and other treatments every 20 minutes. My wife and I never left her. I went to work and my wife nursed her during the day. I slept in the evening and then nursed her through the night. My wife world to begin the process again the day after.
The doctor confused an attempt to save a life with the opportunity to investigate an occurrence of a very rare disease. For many years afterwards, if I had met the doctor I would happily, as they say, done him serious violence. Mercifully for all involved, I now forget his name.
My position as director of Martin house, children's hospice, puts me in a position where I sit on either side of and work with similar consultants. I am very happy that many of the people who cared for my daughter were of the highest quality -personally and professional. Medicine practised without those personal qualities however he is an empty, and potentially extremely damaging activity.