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Dáil Éireann díospóireacht -
Thursday, 9 Dec 1999

Vol. 512 No. 5

Adjournment Debate. - Organ Removal and Retention.

(Carlow-Kilkenny): I thank the Chair for allowing me to raise this serious topic. The death of a child is distressing for parents at any time. To discover five years after that sad event has taken place that the lungs and heart of the child are on a shelf in the hospital is shocking and cruel. I raise this matter in an effort to help the parents involved, Bernard and Fionnuala Reilly, to get answers. I realise the Minister of State will have a prepared script but if it does not cover the following questions I would appreciate a further reply from him later. The answering of questions from the parents could help soften the blow.

The parents about whom I am speaking and all the other parents who have been caught in this situation and have now formed the Justice for Parents Group would like to know how the organs of a child could be kept for five years in any hospital. Why did this happen and can the Minister of State guarantee that it will never happen again? When asked how long organs can be kept a hospital spokesperson used the phrase "for a reasonable period of time". What exactly does this mean? Is there an onus on the hospital to return the organs to the parents at the end of this period? The mention of incineration is not something that placates parents who are already deeply upset.

The hardship unnecessarily imposed on parents who have discovered these sad facts cannot be overexaggerated. No hospital should repeat this ordeal unless parents willingly and formally agree to organs being kept, perhaps to help another child lead a fuller life. The donation of organs is a vital part of medical science and the donor or their relatives must always agree. What makes this matter upsetting for parents and any right thinking person is that it has been handled in such a careless manner.

Will the Minister of State establish an inquiry into these events to enable the Parents for Justice Group to ask questions, receive explanations and, above all, guarantee that a new standard will prevail to ensure they do not recur? There is a lack of information and an absence of acceptable explanations. Parents should not have to suffer further by having to fight bureaucracy to secure the information they require. All possible facilities should be put at their disposal.

The question asked of the Minister of State regarding the policy of hospitals in holding human organs in storage without the consent or knowledge of the families involved does not convey the outrage, distress and trauma suffered by the many families involved in this crisis. We still do not know how many are involved. The death of a family member is a cause of sadness. To have this revisited on the family concerned because of the policy of hospitals is not good enough. The families involved should have complete access to files and information and their fears and concerns allayed forthwith. There should be a public inquiry to enable the Parents for Justice Group access the available files on the many families involved in this distressing situation.

I appeal to the Minister to reveal the general policy of the hospitals to hold human organs in storage for periods of up to five years without the consent or knowledge of the families involved. Will the Minister also outline the current policy in relation to this issue and the policy and procedures that prevailed prior to 1997? How many such organs are still being held in storage without the knowledge of the families concerned? What is the intention of the hospitals or the Department in terms of revealing all this information, informing the families and/or the disposal of the organs? What steps does the Minister intend to take to progress the queries currently before the Department and the hospital concerned? How many hospitals are involved? We must be able to determine the extent of the problem and I ask the Minister to proceed in a proactive way so that we can alleviate any further distress, sadness or trauma being experienced by the families. We should have a full and frank report through a public inquiry.

I thank Deputies Browne and McGuinness for bringing these issues to our attention. The Minister regrets that he cannot be here this evening to reply to these Adjournment matters owing to a prior engagement.

I am glad to have the opportunity to outline the position in relation to the retention of tissue or organs following post-mortem examination. Before doing so I would like to express my sympathy to the families concerned for the stress and additional grief they have suffered as a result of the disclosure of practices in this sensitive area.

As the Deputies will be aware, post-mortem examinations are carried out to establish the cause of death and to examine the effects of treatment. This usually involves the retention of tissue. In certain cases the post-mortem examination is incomplete without the retention and subsequent evaluation of an entire organ.

I am informed that it has traditionally been accepted practice in pathology that consent to a post-mortem examination is required. However, it has not been standard practice to provide relatives with specific details of the retention of tissue and organs for further diagnostic or other purposes.

Current practice in autopsy pathology was developed many years ago at a time when the principles of informed consent were less developed. The area is particularly difficult as it involves the presentation of an important area of medical practice and scientific inquiry to people who are unfamiliar with the autopsy, and who may find the procedure upsetting at a time of emotional stress.

The professional body responsible for standards and practices in pathology in Ireland, the Faculty of Pathology, Royal College of Physicians of Ireland, has been reviewing current consent arrangements for post-mortem examination and, in particular, the retention of tissue or organs for further diagnosis, teaching and research. The faculty has recommended to its fellows that specific consent for retention of tissue for such purposes be sought for all post-mortem examinations. The faculty considers that it is essential to be explicit in relation to this issue and accordingly is currently finalising a set of guidelines which will be issued to all members of the faculty as soon as possible.

The concerns regarding the retention of tissue or organs at Our Lady's Hospital for Sick Children, Crumlin arose initially in June 1999 from a specific case at the hospital where it emerged that tissue had been retained following a post-mortem procedure performed at the hospital in 1985.

My Department's chief medical officer reviewed the practice in Crumlin at that time and was satisfied that the practice which had applied in Crumlin was consistent with the standard practice of pathologists in general. On the basis of this review, the CMO was satisfied that the hospital had taken appropriate steps to introduce a more comprehensive consent form which dealt specifically with the retention of tissue and organs.

I understand the total number of children whose organs have been retained at Our Lady's Hospital for Sick Children is 98. The hospital is pursuing a sensitive method of dealing with retained tissue or organs, first through the faculty of pathology and more recently with a crematorium. Once that mechanism is in place, it is the hospital's intention to contact all of the families concerned. In recent months the hospital authorities have responded to families who have contacted them and have arrangements in place to facilitate any individual family who wishes to make alternative arrangements.

The chief medical officer of my Department has today written to the chief executive officer of each health agency asking them to ensure, pend ing the issue by the faculty of pathology of its guidelines on this matter, that a policy of informed consent by next of kin to the carrying out of a post-mortem and retention of tissue or organs operates in each health agency. Each agency has also been asked to make appropriate arrangements to deal with any organs or tissue which have been retained and in a manner which is sensitive to the needs of individual families.

Monitoring of post-mortem examination practices is a matter for the health agencies concerned. I am confident that the guidelines of the faculty of pathology, which will ensure that tissue and organs will only be used for diagnostic, treatment and research purposes where explicit consent has been obtained from next of kin, will form the basis for best practice in this area.

I am satisfied these arrangements will ensure that post-mortem examinations are conducted in a manner that is sensitive to the needs of families and will ensure that the necessary functions and processes involved in post-mortem examination can be understood and accepted by the general public.

The Minister has received a formal request to meet with concerned parents on this matter and I know he will respond positively to this request.

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