The Bristol inquiry was established to investigate deaths occurring at a paediatric unit in a British hospital. During this inquiry it was revealed that organs removed from the bodies of children undergoing post-mortem examination were retained for more detailed examination and not returned with the body for burial or cremation.
The public became aware subsequently that this was a consistent practice at post-mortems carried out on adults and children, not only in Britain but in most of the world, including Ireland. While public attention has focused on practices at Our Lady's Hospital for Sick Children in Dublin, the Faculty of Pathology has confirmed that this practice is the same in hospitals throughout Ireland.
When this information became available to the public in Britain and Ireland, it was a cause of tremendous grief for some parents whose children had undergone post-mortem examination. The anger expressed by relatives is understandable, especially as specific consent was not obtained for the retention of organs.
Post-mortem examination has a vital role in determining the cause of death in some cases. Furthermore, the information obtained can be of benefit in improving the care provided for individuals who suffer from a similar medical condition. The practice of retaining organs following the initial post-mortem examination is in many cases unavoidable. A comprehensive examination of organs such as the brain and heart requires techniques that may take a number of days or weeks to complete.
A number of questions arise from this controversy. Why was specific consent for the retention of organs not obtained? Why was the storage and disposal of such organs so insensitive? Finally, what policies need to be put in place to ensure that such organs are properly and sensitively handled in the future?
Consent is always obtained for a post-mortem examination carried out for medical as opposed to legal reasons. Asking bereaved parents for permission to carry out a post-mortem examination immediately after the death of their child is a harrowing experience for any professional. Doctors in hospitals around the world have taken the view that to ask specifically for consent to retain an organ, such as the brain, heart or lungs, might add significantly to the distress of relatives at the time of bereavement.
It now appears that this policy was wrong. Some of the relatives involved have said they wished they had been informed. While the practice of not asking for consent for retention of specific organs arose from a genuine wish to prevent further pain for distressed relatives, this was a presumptuous approach which will have to be changed.
A further and understandable cause of grief for relatives has been the knowledge that no formal system existed for determining how these organs were handled after examination and how they were disposed of ultimately. This in retrospect is perceived as a lack of sensitivity by the medical profession as to the importance of these organs.
Families were not made aware of what happened to the organs. The widespread acceptance in all institutions over many years of this arbitrary practice in relation to the retention, incineration or use of organs for teaching purposes led to an acceptance by the medical profession of these processes.
I have no doubt that the medical profession in Ireland and many other countries now realise the hurt this has caused. We urgently require a Human Tissues Act to establish how organs should be handled when they are retained at post-mortem.
I believe that all of us at Our Lady's Hospital for Sick Children regret that, while following national and international practice in relation to post-mortems, we failed to identify the potential to cause hurt to the bereaved families, until we noted the response of parents to the disclosures of the Bristol inquiry. These revelations and the distress they have caused to some of the parents of children who have died at Our Lady's Hospital for Sick Children have also been a cause of anguish for many of the nursing, medical and administrative staff at the hospital.
Most of the parents who have suffered the terrible loss of a child will agree that the doctors and nurses involved have always striven to deal compassionately with their loss. Indeed, the death can also have a terrible effect on those who cared for that child in hospital.
The Minister for Health and Children, Mr Martin, has now decided upon a public inquiry. This is a time when wise counsel is required. The Minister has been correct in not rushing to provide short-term solutions to what is a long-term problem. There is a need to try to re-establish the credibility of the post-mortem process.
If the public is not reassured very few post-mortems will be carried out in future and the long-term effects of this on the management of sick adults and children are likely to be significant. There is a need to ensure that retained organs are dealt with in a sensitive manner.
Groups such as Parents for Justice can play an important role in advising as to what would be the most sensitive way of dealing with those issues. Equally, as the vast majority of relatives have not made contact with the help-lines that have been established, there is a need to try and assess the opinions of those families.
Finally, there is an acceptance by all of the medical professionals in this State that the practices to-date need to be changed.
With this acceptance and the mature approach taken by our politicians, press and most importantly the bereaved relatives, we can develop excellent guidelines as to how post-mortems and the issue of retained organs should be dealt with. Perhaps these guidelines can be an example to the many other countries where the problem arises.
Prof Brendan Drumm is a consultant paediatric gastro-enterologist at Our Lady's Hospital for Sick Children and head of the department of paediatrics at UCD