Dáil Éireann debate -
Tuesday, 22 Oct 2002

Vol. 555 No. 5

Private Members' Business. - Organ Retention and Disposal: Motion.

Caoimhghín Ó Caoláin

I move:

"That Dáil Éireann:

deplores the practice, carried out over many years and up until recently, whereby the organs of deceased children were retained and disposed of without the knowledge or consent of their parents, a practice which has caused untold grief to hundreds of families; and

recognises the valuable work done by pathologists and medical researchers and their need for access to human organs-tissue on the basis of consent of the next of kin of the deceased;

calls upon the Government to:

publish a human tissue Act which would regulate by statute the practice of pathology within the State: and

mandate the health boards to appoint bereavement officers in all major hospitals;

resolves:

that it is expedient that a tribunal be established under the Tribunals of Inquiry (Evidence) Act, 1921, as adapted by or under subsequent enactments of the Tribunals of Inquiry (Evidence) Act, 1979, to inquire urgently into and report to the Clerk of the Dáil and make such findings and recommendations as it sees fit, in relation to the following definite matter of urgent public importance:

post mortem policy, practice and procedure within the State since 1970, with special reference to all issues relating to post mortem examinations, organ removal, organ retention and organ disposal;

that the inquiry be completed in as comprehensive, economical and speedy a manner as possible; and

that the Clerk of the Dáil shall, immediately on receipt of any report from the tribunal, arrange to have it laid before both Houses of the Oireachtas."

I wish to share my time with Deputies Gormley, Cowley, McGrath and Healy.

On 17 October following a meeting with the Minister for Health and Children, Deputy Martin, the representatives of Parents for Justice withdrew from the non-statutory Dunne inquiry into the practice of organ retention, removal and disposal. They did so, in the words of their spokesperson, Fionnuala O'Reilly, "reluctantly and sadly". Frustration at the lack of progress of the Dunne inquiry and grave doubts as to the prospects of the promised statutory inquiry have been added to the great pain felt by many families. There should be no need to table this motion but the sponsoring Deputies have done so at the request of parents who feel they have reached a cul de sac and that the State has failed them. They consider that the route of a statutory inquiry as set out in this resolution is the only way they can establish truth and justice.

It is almost three years since this scandal came to light. Four bereaved mothers sought answers when they found out that their deceased children's organs had been removed and disposed of without their knowledge or consent after post mortem in a leading Dublin hospital. They were shocked that this could be done behind their backs by a trusted health care institution and they were insulted when their questions were met with silence or evasion. Fionnuala O'Reilly, Charlotte Yeates, Breda Butler and Margaret McKeener decided to speak out.

When the victims of a hidden injustice speak for the first time their voices are soon echoed by many other hidden victims. After they spoke out in December 1999 the four women received more than 2,000 phone calls in the space of three weeks. These bereaved families were beginning to ask questions about the treatment of their children after death in hospitals. What they found out was a cause of deep pain to them and a disgrace to a system in which such practices had become routine.

The organs of deceased children were removed without the knowledge or consent of the bereaved parents or next of kin. They were retained for various purposes, often lying for years in laboratories, and they were disposed of with hospital waste. The extent of organ removal from individual deceased children is distressing in the extreme, with many organs, including the brain, taken away and the integrity of the body completely destroyed.

To compound the scandal and to add further pain to the bereaved, it was revealed in February 2000 that one Dublin hospital had received money from a pharmaceutical company in return for the pituitary glands removed from the bodies of dead children. It has been established that this practice was routine for a decade from the mid-1970s to the mid-1980s.

It has been harrowing to listen to the accounts of bereaved parents and special tribute must be paid to those who have relived their grief in public to help others. I will place on record briefly two of those experiences. PJ and Josephine Cleere of Tinryland, County Carlow, were married in 1984 and on 1 May 1985 Josephine went into labour with their first child in a leading Dublin maternity hospital. The child had anencephaly and Josephine was informed coldly during labour that he would not live. The child was born alive but the hospital staff at first told the parents he was dead and refused them access to him. PJ and Josephine had to argue with the staff before they were allowed five minutes with their infant son who was christened Patrick.

PJ was sent home from the hospital and Josephine's request to hold her son again before being put under sedation was denied. So also was her request to be awakened if anything should occur. When Josephine awoke next morning, she was told her child had died in the night and a post mortem was already under way. No permission was sought for the post mortem and none given. The hospital refused PJ access to the inner car park of the building to collect the child's coffin. He had to carry it out in a hold-all. When the organ retention scandal came to light 15 years later, PJ and Josephine found that their child's intestines, spinal cord, liver, trachea, kidneys and other internal organs had been removed and were still retained in storage in the hospital laboratory.

The tragic case of the Cleere family demonstrates the attitude towards patients which prevailed for decades in the hospital system, namely, to tell them as little as possible. It was an outlook of condescension which took no account of the need for truth and understanding among people suffering illness, facing death or experiencing bereavement. The Cleere family, who have been through so much, say that some experiences are much worse than theirs.

An example is a much more recent case. Orla Conway died of sudden infant death in September 1998. She was taken to another leading Dublin hospital where it was decided to carry out a coroner's post mortem as she had died suddenly at home. Her parents were given no information about the post mortem. When the organ retention scandal came to light Orla's mother, Róisín McCormack, contacted the hospital to find out about her child. She was told that the child's organs had been removed and retained without their knowledge or consent. The brain, heart, lungs and spinal cord were still in storage in the hospital. The parents were presented with the organs in two white plastic buckets.

Since its inception Parents for Justice has sought a statutory inquiry. In early 2000, as a compromise between this demand and the Minister's preference for a non-statutory inquiry, a two-tiered inquiry was agreed. The first stage was the private inquiry chaired by Anne Dunne SC and the second stage an inquiry by a committee of the Dáil. In September 2000 in a letter to Parents for Justice the Minister expressed his full confidence in the private inquiry followed by the Dáil committee's public inquiry. He said that, in the unlikely event that this did not prove viable, he would pursue the establishment of alternative forms of inquiry, including a statutory inquiry under the Tribunals Acts. Parents for Justice co-operated with the Dunne inquiry and furnished it with a huge volume of information.

On 11 April 2002 the Supreme Court delivered judgment in the Abbeylara inquiry, effectively rendering powerless any further inquiry by a committee of the Oireachtas. The second stage of the process agreed by Parents for Justice was now in doubt. Parents for Justice met the Minister on 17 April and he undertook to seek advice from the Attorney General. Parents for Justice stated that despite extensive co-operation over the summer, no progress was made and there was no meaningful engagement from the Minister until last week's meeting. The group's deadline for withdrawal from the Dunne inquiry was the night of the meeting with the Minister. They duly withdrew, as they said, "with sadness and pain".

It is important to put on record the reasons for withdrawal. Parents for Justice stated

Given the considerable period of time which has now elapsed since we first brought our concerns to the Minister about the impact of the Supreme Court judgment on the proposed Oireachtas committee stage of the post mortem inquiry, we are of the view that we can no longer continue to co-operate indefinitely with the non-statutory phase of this inquiry which will not be in a position to complete a final report until 2004.

They also state that the inquiry "by its own admission to the committee of Parents for Justice on 4 April 2002 has not obtained 100% co-operation from health professionals to date".

Again I quote Parents for Justice

We do not believe we are being unreasonable in withdrawing from the Dunne inquiry. . . We attribute this debacle to the Minister's failure to address this issue with the sense of urgency and sensitivity that bereaved families deserve. The Minister's failure to engage meaningfully with us has resulted in this impasse.

I request that the Minister, in his response, confirms the cost of the Dunne inquiry to date. Is it the case that €4.3 million has been spent on this inquiry so far? This seems excessive for an inquiry that, in the view of the main participants, has achieved so little and is set to run so far beyond its deadline. I would also like the Minister to clarify the terms and conditions of Ms Dunne's appointment.

One of the most serious questions raised is that hospitals may have been in breach of the law and carried out post mortems under false pretences and failed to have deaths registered properly. Many parents and other next of kin allege that hospitals failed to notify their area coroner of deaths under anaesthesia. This failure would be in breach of the Coroners Act, 1962. It is also alleged that hospital clinicians told parents that a coroner had ordered a post mortem but that parents later found from the coroner's office that it had no knowledge of these cases. As Parents for Justice points out, the intervention of a coroner negates the need to obtain consent from next of kin for a post mortem. We must know how widespread these unlawful practices have been in Irish hospitals and this information must be brought to this House. We also need to know if the obscene exchange of pituitary glands for money was isolated or widespread.

Most of the focus so far has been on Our Lady's Hospital for Sick Children in Crumlin and the National Maternity Hospital, Holles Street, but this House must learn the full facts from a proper investigation to establish whether this post mortem practice has been continuing throughout the State. Has it been part of the practice of hospitals elsewhere in the jurisdiction?

I urge the Government to support this motion. I note the Minister has tabled an amendment. Even at this late stage I urge him to withdraw his amendment and support the motion, which has the support of 22 Deputies, to allow the bereaved, those at the centre of Parents for Justice and those who depend on the energy and effort on the part of members of that group to find truth and justice at last.

Mr. Gormley

I thank Deputy Ó Caoláin for sharing his time. This is an extremely difficult and sensitive topic for everyone in the Chamber. We should never pretend that those on the Government benches are somehow more callous than those of us in the Opposition. I know they can understand the trauma of the parents here this evening. I know that my colleagues have the capacity to empathise with their plight and pain. As parents themselves, how could they not? The death of a child evokes emotions so raw and so searing that it is almost unbearable.

I know from talking to bereaved parents that such a death is accompanied by guilt so enormous that it engulfs every moment of every day. There are the memories of holding that tiny fragile being for the final farewell. These are painful, sacrosanct memories. They are part of the fabric of a cherished child's life and death.

Now fast forward five years, ten years, 15 years or 20 years. Let us imagine we discover that our most cherished child's body has been plundered, violated in the most grotesque manner imaginable. This has been the experience of the parents in the Public Gallery this evening. Each family has its own harrowing tale to tell, a tale of a life cut short, a future denied and a tiny fragile defenceless body desecrated and violated on cold slab in a hospital laboratory.

There is the case of a mother and father who sat in a hospital consulting room five years after their son's death and who learned the boy's organs were at that moment sitting on a hospital shelf, down the corridor. How can we even begin to understand how horrific it must be to sit in a consultant's room and be told that parts of your most cherished baby are being preserved in a bucket of formaldehyde in a room nearby? Can anybody even begin to understand the impact that the unauthorised removal, retention and disposal of human organs by Irish hospitals has had on thousands of families throughout the State? Can anybody begin to understand the trauma of discovering that one's most precious child has been relegated to the status of a spare part in a hospital laboratory? Can we even try to comprehend the agony of a family that then has to retrieve these organs and endure a second funeral? Let me assure this House that all the immediacy and anguish of a child's death is revisited on such an occasion in all its original intensity.

Members of one family discovered that their daughter's organs were burnt as part of a hospital waste plan. Those organs were considered waste – refuse to be disposed. When they confronted the consultant his callous reply was, "What use were the organs to her anyway, sure they would only be rotting in the ground?" Having double-checked this I am assured this was actually said to the parents.

There is the case of a mother who learned in common with thousands of other families that her son's organs were retained without her knowledge or consent. In addition when she tried to obtain a death certificate she discovered that one did not exist. This was 18 years after her child's death. As well as stealing from her child's body, the hospital in question failed to register the death. This constitutes a clear breach of the Births and Deaths Registration Act.

These cases represent only a fraction of what is being investigated by the non-statutory Dunne inquiry, which by its own admission has not obtained 100% co-operation from hospitals and health professionals. It has sought to gag grieving families and has missed two deadlines for producing a report. As reported in a Sunday newspaper the inquiry's chairperson is still engaged in her own private practice. The inquiry has cost the taxpayer €5.3 million to date. It has not obtained one answer for one family despite having been in session since March 2001.

This is the debacle over which the Minister presides and for which he must bear responsibility. The practices outlined did not take place in a barbaric or Dickensian past: they took place routinely in almost every hospital in the State until very recently.

How can the Minister defend an inquiry where the chairperson has been paid €1.4 million for her work and which has yet failed to produce a substantial report? How can the Minister explain the terms of the chairperson's appointment? How can the chairperson still be engaged in a busy private practice? Does the appointment of such a part time chairperson really suggest a meaningful commitment to the inquiry process?

Apparently the chairperson does not believe that a report will be presented in the foreseeable future and it is speculated that a final report might not be presented until 2004 or 2005. The inquiry is investigating allegations that may have constituted criminal acts – there appears to have been wholesale breaches of the Coroners Act, 1962 and the Births, Deaths and Marriages Registration Acts. It is in the public interest that these matters be investigated with the transparency and rigour that only a statutory inquiry can provide. It has been established that the pituitary glands of children were removed and sold to pharmaceutical companies without the knowledge or consent of parents. As commercial motivation or profiteering may have underpinned the removal and retention of organs, it is in the public interest that this issue be investigated with the rigour and transparency that only a statutory inquiry can provide.

The proposed second phase of this inquiry – an investigation of the Dunne report by the Oireachtas Committee on Health and Children – is not feasible in the wake of the Supreme Court judgment on the Oireachtas inquiry into the Abbeylara incident. The Minister must acknowledge that Parents for Justice agreed to co-operate with the non-statutory Dunne inquiry entirely on the strength of the statutory powers that would allow an Oireachtas committee inquiry. In view of the above facts, can the Minister offer any compelling reason for not immediately establishing a statutory inquiry into post mortem policy, practice and procedure?

Many of the Minister's predecessors put too much trust in the advice of their officials and they paid the political consequences. He knows in his heart the right course of action. It is time to trust in himself. Justice delayed is justice denied and if the Minister wants to leave the Chamber tonight with his political integrity and credibility intact, he will co-operate fully with the Parents for Justice group and establish the post mortem inquiry on a statutory basis.

Dr. Cowley

I am glad to speak on this motion. I am aware, as are other speakers, of how sensitive this issue is and how deeply distressing it must be to the families concerned. One can only start to imagine the tragedy of a child whose organs were allegedly removed without the prior knowledge and consent of parents. However, it is not just the parents and families who are saddened by this controversy; the medical profession is also saddened. As a GP who deals with families, I am saddened by this.

When a child dies it is a tragic event. I have five children and I do not expect to outlive any of them – please God I will not. A parent rightly expects to have their children with them in their old age. For a parent to lose a child is a tragedy but to hear subsequently that the child's organs have been partly removed must be a truly harrowing experience, particularly when it is done without the knowledge or consent of the parents. Parents for Justice was set up because of this and withdrew from the Dunne inquiry, which was set up by the Government to look into this controversy in which hospitals were allegedly involved in removing and retaining deceased people's organs for the last 30 years without the permission of those people's relatives.

The Parents for Justice group was not happy with this inquiry because it felt the inquiry needed more power. It felt some hospitals and doctors had been slow to co-operate, that there were no effective deadlines for co-operation nor sanctions for failure to co-operate. Also, parents had to sign a confidentiality clause, with the result that they could not get access to information they might require about the children. On the other hand, the interim report sent to the Minister stated there had been a high level of co-operation from doctors in general and that there had been no cases of refusal to co-operate, although on an individual basis some people had been slower to co-operate than others. This inquiry has no statutory powers, but it should have. Neither can it give legal representation or award legal costs. Both doctors and parents are affected by this lack of statutory powers, particularly the latter. Doctors who wish to attend and give evidence in due course also have difficulties.

We need the truth from this inquiry and it is important that all involved co-operate to allow the necessary outcome. There needs to be a statutory basis for the removal, retention and deposition of tissues and organs in coroner-directed and other post mortems. In addition, this inquiry should be public. The Dunne inquiry may feel that confidentiality is necessary for full co-operation from doctors in hospitals, but if that is not forthcoming what is the point? How else can students properly learn in pathology? I learned about disease through pathology; it was necessary for us to learn about disease in order to treat it.

This controversy has soured relations between the public and the medical profession, and hospital doctors in particular. It represents a vestige of the past, a dinosaur which has become extinct. As in other countries, the profession did things without the full recognition of the rights and sensitivities of the public and that should be recognised. However, this was done without malicious intent and in a paternalistic context, where the doctor knew best or at least thought so even if he did not.

I hope the practice of organ retention is consigned to history and that this controversy is sorted out. It has already resulted in hospitals introducing new procedures governing post mortems and organ retention, yet the profession should not be slow in recognising that although it had good intentions, it was wrong – the road to Hell is paved with good intentions. We should not be slow to say sorry and to apologise for something that was done, not out of a sense of malice but out of wanting to ensure medical science would find the causes of the diseases of the future. What parent would not be willing to co-operate with that? Who would not be willing to ensure that no further tragedies would occur and that no more children would die? However, the objective on the part of doctors of wanting to save lives in the future should be balanced with the fundamental and important constitutional rights of parents and their deceased children.

As a father myself I am very touched by the personal details unfolding in this sorry saga and I support the motion.

Mr. F. McGrath

The retention of the organs of deceased children without their parents' permission is the core of this debate. This is not about having a go at the medical profession or at extremely valuable work done by pathologists and medical researchers, and it is extremely important that is on the record.

It is also important to highlight the invaluable work that goes on in our hospitals. Many families, including those of Members of the Oireachtas, owe the lives of their children to the magnificent work of medical staff. We cannot thank them enough for their efforts and essential, life-saving research must go on. However, it must be with the agreement and consent of those directly affected.

Arrogance and medical snobbery cannot be allowed to dominate this debate. Saving lives and the consent of those involved are the core issues in this debate and are the way forward to a solution. The discussion should not get side-tracked without reference to the vast majority of citizens, especially children, who are seriously ill. We must focus on them and ensure they receive as of right the best quality medical care and service regardless of public finances. I am deeply concerned about the current situation in many hospitals where services are being threatened. I ask the Minister for Health and Children to give an undertaking that he will do his best to ensure there is no reduction in these services. I want to see the quality of life protected for thousands of children. It is essential that these issues are linked to this debate. We cannot allow a situation where young adults with disabilities, some of whose parents are terminally ill, are unable to find a residential respite care place. Does the Minister not find this unacceptable? These are real people and they need the State's support.

I support the motion which calls for the publication of a human tissue Bill to regulate by statute the practice of pathology. I also support the motion calling for the Government to mandate the health boards to appoint bereavement officers in all major hospitals. In that regard, we wish them to be properly qualified, experienced people who are genuinely able to deal with hurt, pain and bereavement. Many people who have been down that road have often felt alone and isolated. It is up to all of us to do something practical for these people.

I welcome the motion which proposes that the inquiry be completed in as comprehensive, economical and speedy a manner as possible. We do not want any talks about talks, but action for the families. We need professionals to get on with the job so the families can get on with their lives. Speed and efficiency are essential. We must ensure, above all, that the families concerned are respected and that their dignity and privacy are protected.

This motion recognises that we have some of the best medical professionals in the world. We owe a great debt to their professionalism and to their caring abilities. I urge all parties to support our motion which deals with the families who have suffered. I welcome the Parents for Justice group to the House. They have our total support and commitment.

Mr. Healy

This is a very sensitive and distressing subject. I would prefer if it did not need to be raised in the House and that the Minister and his Department acceded to the request of the Parents for Justice group for a full statutory inquiry. Even at this late stage I ask the Minister to withdraw his amendment and accept the motion.

I compliment the Parents for Justice group who have highlighted this issue. The group was formed in December 1999 and has worked tirelessly since then to ensure the issues were brought to the attention of the Department, the Minister and the hospitals concerned. It must be a traumatic experience for the families and must be accompanied by feelings of frustration, distress and even a sense of guilt. That is why I suggested this matter might have been better dealt with in another forum.

Many of the hospitals where the removal, retention and disposal of organs of deceased children following post mortems happened may be in breach of the law as stated in the Coroners Act or the registration Acts. I fully support the motion. Everyone deplores the practice carried out over many years whereby the organs of deceased children were retained and disposed of without the knowledge or consent of their parents. That practice has caused untold grief to hundreds of families. The real hurt is that these procedures were carried out without the knowledge or consent of the families concerned.

I support the call for a human tissue Bill to regulate by statute the practice of pathology and that health boards should be mandated to appoint bereavement officers in all major hospitals. I have worked in the health services for many years and believe that bereavement officers are an essential service. Many hospitals have focused on this area and have bereavement rooms and nursing staff who are specialists in bereavement care. The appointment of bereavement officers in all hospitals would give a new focus to this area and I ask the Minister to consider and approve this suggestion.

The motion asks that the inquiry be completed in as comprehensive, economical and speedy a manner as possible. The operative word is "speedy". The Parents for Justice group was formed in December 1999, three years ago and it has done much good work since. The focus must now be on the completion of that work and that should be on a statutory basis. A speedy resolution is vitally important for the parents, the hospitals and the professionals concerned.

Minister for Health and Children (Mr. Martin)

I move amendment No. 1:

To delete all words after "Dáil Éireann" and substitute the following:

"– acknowledges the public concern that exists in relation to the removal and retention of the organs of deceased patients without the knowledge or consent of parents or next of kin and regrets the grief and suffering that this has caused the families concerned;

– supports the Minister for Health and Children in his determination to have an investigation into organ removal, retention, storage and disposal, completed in as comprehensive, economical and speedy a manner as possible;

– notes that an Inquiry under the chairmanship of Ms Anne Dunne SC is examining all aspects of post-mortem practice in the State, with special reference to issues relating to post-mortem examinations, organ retention and organ disposal;

– notes that the Minister intends to refer the report of the Inquiry, when available, to the Joint Oireachtas Committee on Health and Children and, if for whatever reason it is not possible for that committee to deal with the report, will ensure that the report is considered in an appropriate forum, with statutory powers;

– calls on the Minister to ensure that health boards and hospitals review and strengthen, if necessary, their arrangements for providing support, counselling and assistance to the parents and next-of-kin of deceased patients; and

– notes the commitment of the Minister to bring forward legislative proposals to regulate the use of organs and human tissues for necessary medical and research purposes based on the consent of the donor or the next-of-kin of the deceased, as appropriate."

I thank the Deputies who have raised this issue and who have contributed to the debate. I welcome the opportunity to brief the House on the position in relation to the inquiry into the removal and retention of organs. The loss of a child is an extraordinarily traumatic event in any parent's life. The additional distress caused to parents as a result of post mortem practice is especially painful. I know my colleagues will join me in expressing our heartfelt sympathy to the members of Parents for Justice and all who have lost their loved ones.

It would be helpful to begin by reminding the House of the background to this matter. An inquiry in the UK into the management of the care of children receiving complex surgical services at the Bristol Royal Infirmary disclosed that following post mortem examinations, the organs of children who had died were removed and retained by the hospital. A further inquiry into Alder Hey Children's Hospital in Liverpool found that the organs of a large number of children were retained without the consent of parents or next of kin.

Media reports of these revelations in 1999 caused the parents of children who died at Our Lady's Hospital for Sick Children, Crumlin, to query the hospital's practice in the area of removal and retention of organs. Up to 27 March 2000, approximately 1,700 inquiries from parents had been received by the major hospitals. Concerns were also expressed about hospitals' participation in the extraction of pituitary glands from deceased children. Our Lady's Hospital for Sick Children, Crumlin, confirmed that there was an indication in correspondence that its laboratory participated in this process of extracting pituitary glands from deceased children which were then supplied to a pharmaceutical company called Kabi Vitrum for the treatment of growth disorders. Since then a number of other hospitals have stated that they participated in this practice.

Parents of children whose organs had been retained by Our Lady's Hospital for Sick Children, Crumlin, formed a support group called Parents for Justice. I provided the necessary administrative and financial support to facilitate the group in becoming established on a formal footing and I continue to do so.

I had detailed discussions with Parents for Justice and its legal advisers to agree on the format of the inquiry. I wished to move forward in an open fashion in partnership with the group. At all times a priority was to respect a person's privacy and confidentiality while at the same time encouraging all relevant parties to give evidence.

A major consideration at the time was that many parents might not be open to the prospect of going before an open and public tribunal to talk about the traumatic event of the loss of a child. Some parents might wish to participate in such a forum, but there might be many others who might not wish to do so. One could have declared a statutory forum under the 1921 Act at the outset. Prior to that, we had established the Laffoy Commission which provided for victims of sexual abuse, a different issue but, nonetheless, it allowed victims to make submissions to a statutory inquiry through private means or means which would not necessarily be in the public glare. There was a genuine issue which guided me in my view as to whether we should go down the statutory route as per the 1921 Act or take this particular route.

We opted for the non-statutory process on 4 April 2000. On foot of a memorandum which I submitted to Government, a decision was taken to establish a non-statutory inquiry which would review post mortem policy, practice and procedure in the State since 1970, particularly relating to organ removal, retention and disposal by reference to prevailing standards both in and outside the State. At that stage, Parents for Justice went along with this proposal on the basis that I give a written commitment that there would be a second phase – the Joint Oireachtas Committee on Health and Children would be the statutory phase. That was the basis on which we proceeded.

The terms of reference of the inquiry are to review all post mortem examination policy, practice and procedure in the State since 1970 and, in particular, as it relates to organ removal, retention, storage and disposal by reference to prevailing standards both in and outside the State; to examine the application of these policies, practices and procedures in all hospitals; and to address the hospitals' policies, practices and procedures in this area of organ removal, retention, storage and disposal, the necessity for such prac tices and the manner in which they were carried out.

The inquiry would take account of best practice regarding post mortem examinations in and outside the State together with the reasonable expectations of parents of deceased children and next of kin in such circumstances. In particular, the inquiry would: examine the hospitals policies and practices relating to obtaining consent from parents and next of kin for post mortem examinations, organ removal, retention, storage and disposal; examine the hospitals procedures and practices relating to retained organs, including the reasons for such retention, the hospitals management of such retention and storage of organs, including record keeping, and of any other arrangements relating to such organs and the practices adopted for ultimately dealing with retained organs, including arrangements with pharmaceutical companies in relation to those retained organs; review the nature and appropriateness of the hospitals' overall response to parents of children and next of kin of persons on whom a post mortem examination was performed and examine specific cases in any hospital as it deems appropriate in relation to post mortem examinations and post mortem examination related matters.

It is at the discretion of the inquiry to examine any other relevant matters which arise in the course of its work. The report is to include confirmation that the inquiry received all the information and co-operation from health agencies, persons employed therein and any other persons which it considered necessary to form its opinions and to arrive at its conclusions. In the event of deficiencies arising in these areas which the inquiry considered materially limited the scope of its investigations, the report would identify same. At that time, I made it clear to parties on all sides that on receiving such intimations from the inquiry, I would have no hesitation in moving to the statutory phase. It was in everybody's interest to co-operate because if they did not do so, they would have to do so in a different format.

Following that decision, I had further consultations with Parents for Justice. I agreed that when the report of the inquiry came to hand, I would refer it to the Oireachtas Joint Committee on Health and Children. The committee could decide whether to conduct hearings in relation to the report and if it considered it appropriate to do so, to avail of powers to call witnesses as appropriate.

Ms Anne Dunne, SC, was duly appointed to chair the inquiry and set about the task of recruiting a legal team and the necessary support staff. In relation to Deputy Ó Caoláin's point, once the inquiry is established, the Minister must stand back and allow it to do its work. The Department of Health and Children itself is a respondent to the inquiry and has received questions from it. One stands back until the timeframe outlined has expired and then one can seek a report on progress to date.

A team of senior and junior counsel was assembled to assist the chairman in her work and a solicitor was appointed. Administrative and support staff were put in place and a premises at 2-3 Parnell Square East was made available. A public notice was published in the national press in February 2001 inviting the assistance of any persons or bodies who might be in a position to contribute to the work of the inquiry.

In December 1999 the chief medical officer of my Department and the Secretary General wrote to the chief executive officers of all health boards and voluntary hospitals indicating the scope and format to be adopted by the inquiry and requesting that agencies prepare themselves to fully co-operate in an efficient manner and directing that hospitals ensure that appropriate responses be provided to parents and families making inquiries. They requested that all hospitals put in place a policy of informed consent by next of kin to the carrying out of a post mortem and retention of tissues or organs and that mechanisms be put in place to dispose of, as sensitively as possible and with the co-operation of families involved, any remaining organs or tissue which are retained by the hospital. Hospitals were also requested to put structures in place to support helplines and ensure queries from parents or next of kin were quickly addressed and followed up and that the necessary back-up – medical, social work, nursing and administrative – be put in place to facilitate the process.

The chief medical officer also requested that retained organs and tissues should be securely and properly stored, documented and organised in a manner which would facilitate early identification and retrieval for parents and families and that medical and other records be assembled in advance so as to be available when sought and in a manner which would readily facilitate the inquiry. In addition, financial support arrangements were to be provided in individual cases to families who wished to make private arrangements for the interment of retained organs.

An agency that plays a key role in post mortem practice is the coroner service. A major review of the coroner service was co-ordinated by the Department of Justice, Equality and Law Reform and the report of the working group was published in 2000. The report seeks to provide a blueprint for the coroner service for the foreseeable future and provides specific recommendations critical to achieving specific legislative, organisational, financial and service objectives in the short, medium and long-term. In addition, a booklet has been produced on the role of the coroner in death investigation. The booklet is aimed at the public and other interested parties. It gives useful information on death investigation and death certification, post mortem examination, the inquest and other relevant issues.

The original timeframe for the inquiry was, at the request of the chairperson, 18 months. We had originally thought it would be six months but following consultations with the chairperson, this was extended to 18 months, which time expired in early September. Parents for Justice had expressed their satisfaction with the process when they met me in April. At that time the major issue was the Abbeylara judgment. The Attorney General's advice was that Abbeylara should not affect phase 1 in any possible way and that it could continue. In respect of phase 2, his advice was that much would depend on the content of the report that would be presented to the Oireachtas committee. I made it clear at the time and subsequently to Parents for Justice, and I am making it clear now, that in the event of the Oireachtas committee having a difficulty, I would move into a new statutory format.

However, with the knowledge now that the initial phase of the work will continue indefinitely, Parents for Justice have expressed dissatisfaction with the process, particularly on the timeframe. We discussed this issue at some length last week and I will refer to it again later. The inquiry depends on the co-operation of those involved in the work. To date, six of the 11 key hospitals have provided information. Oral submissions have been heard from 78 parents or next of kin and 328 parents or next of kin have yet to be heard.

The inquiry team has had contact with Departments and State agencies. It has identified individuals and organisations that might be able to assist the inquiry and it continues to conduct research, including site visits to hospital facilities and correspondence with pharmaceutical companies. It has received useful assistance from coroners.

The inquiry has considered in excess of 150,000 pages of documentation submitted by participants. The tasks that remain to be completed include: the receipt of documentation from outstanding hospitals; the continued taking of oral evidence from persons who have made written submissions to the inquiry; the hearing of evidence from hospitals and affording hospitals the opportunity to comment on submissions from parents and next of kin who have been heard by the inquiry. In addition, the inquiry is obliged to determine, in a formal manner, in accordance with its memorandum on procedures, issues of factual disputes between participants.

On 16 October I met representatives of Parents for Justice to hear their concerns about the investigatory process. While it was acknowledged that the inquiry has dealt sensitively and thoroughly with parents and next of kin who have been called for interview, it was clear that the length of time it is taking for the inquiry to carry out its work is a major issue for Parents for Justice.

I told the representatives of Parents for Justice that I share their concerns in relation to the timeframe for the inquiry. I requested the inquiry to report to me by September of this year. I met the chairperson in early September. I felt it was the correct process to meet the chairperson first and then meet Parents for Justice to relay the information I gleaned from that meeting. The chairp erson informed me that the inquiry still has a substantial amount of work to undertake and she was not in a position to say when her report will be available. Having regard to the amount of work that remains to be undertaken, it is reasonable to conclude that the completion of the inquiry is some considerable time off. I consider it would be unfair to Parents for Justice and other parties concerned if the process were allowed to drag on indefinitely.

However, the notion that a changeover from a non-statutory to a statutory inquiry would, of itself, overcome the timeframe problem is misguided and untenable. I made the point last week to Parents for Justice that this is not a simple matter of deciding overnight to move by the stroke of a pen from a non-statutory to a statutory inquiry. The only way in which the timescale can be shortened is to give the inquiry a much sharper focus in consultation with all parties. If we were to move to a statutory phase now or in the next period, I would not do so with the existing terms of reference. They are too wide and it would entail a huge logistical exercise.

The original intention was that the immediate focus would be upon the children's hospitals, about which the bulk of the complaints, queries and concerns were expressed. There are other hospitals where there are equally important queries. We have to look at the overall framework if we want to move into a statutory framework. I articulated these points last week. There is room for further discussions and I am available for discussions with all the parties. I am in discussions with the Attorney General on these issues and with the inquiry team itself. There is a problem with the timeframe and the terms of reference are a factor in that. That is an issue that has to be taken on board. I would not move unilaterally on terms of reference because I would be roundly condemned by all sides. I would only do so in partnership and consultation with all the groups, in particular Parents for Justice.

The other major issue of concern to Parents for Justice relates to the statutory phase of the investigation. It has been and remains my intention that the investigation into organ retention issues will have a statutory phase. If it transpires that it is not possible to do so through an Oireachtas committee, whether as a result of the Supreme Court judgment in the Abbeylara case or otherwise, I am committed to ensuring that it is done through another appropriate forum with statutory powers.

Despite my assurances to Parents for Justice that I am committed to the process, the group decided to withdraw from the inquiry process. This is something I very much regret and I have made it clear to the group that my door remains open for further discussions.

I accept there is a need, as some speakers have identified, to address such issues as informed consent and best practice in relation to removal and storage of organs. The only legislative instrument in this area is the Anatomy Act, 1832, which allows for granting of licences for anatomy purposes to persons qualified to practice anatomy. I have instructed my officials to examine the legislation and to identify areas where the regulatory framework needs to be strengthened as a matter of priority.

There has been some progress at European level and the European Commission has put forward a proposal for a directive on setting standards of quality and safety for the donation, procurement, testing, storage and distribution of tissues and cells. My Department is taking an active part in the consultation process with all member states of the European Union and the emerging thinking at EU level will be taken into account in preparing proposals for organ and tissue legislation.

I have heard all the contributions from the various Deputies and I share with them the concerns they expressed. I have heard at first hand some of the appalling stories of what occurred. I attended a major meeting organised by Parents for Justice about a year and a half ago, I think, and it was one of the most harrowing public meetings I ever attended. Some of the stories I heard were appalling in terms of how people were treated. Deputies articulated some of those individual cases and nobody could defend what happened, or defend certain standards of communications to parents in respect of what happened to their children's organs and so forth.

Consent is important. We spoke to the medical bodies when all this was raised as an issue and all the guidelines have been revisited. There are different practices and guidelines in place now and the issue of consent, which was raised by Deputy McGrath, is very important. We have issued instructions and the principle is now in place in hospitals across the country as well as colleges.

The cost of the inquiry to date is €5.3 million and I can give the breakdown to Members later. I will seek clarification on some of the issues that have been raised this evening in the Oireachtas and raise them with the inquiry team.

Caoimhghín Ó Caoláin

Including the terms and conditions?

Mr. Martin

The terms and conditions and the rates are similar to all the other tribunals that are ongoing.

Caoimhghín Ó Caoláin

That would make us all wince given the increases we were advised of this afternoon in terms of conducting tribunals. We would like to have the detail of the terms and conditions, please.

Mr. Martin

I have absolutely no difficulty with that because that is a matter of public knowledge. We do not hold a brief for anybody in that respect. The rates are similar to the rates that jun ior and senior counsel and chairpersons of inquiries would receive across the board. I do not set those rates, they are set at governmental level. The Minister for Finance and the Attorney General's office consult regularly on this issue. Obviously my Department has an input. The amount involved is about €5.3 million, €4.3 million of which is for administrative supports for groups involved and legal costs. However, that does not include the significant costs to hospitals in getting ready for the inquiry, getting documentation, appointing individuals in each hospital to co-ordinate the response to the inquiry and putting in place some of the processes that have flowed from this.

Caoimhghín Ó Caoláin

Will the Minister allow for inflation in terms of the amount of time being employed in the processing by the board of the existing inquiry?

Mr. Martin

I have given certain undertakings. Points were made in the course of the debate about individuals who are not here. I have undertaken to formally raise those with the inquiry team given that they have been raised on the floor of the House. I will ensure that the post mortem inquiry continues in its course of work which will involve the statutory phase. I am committed and open to further detailed consultation with all the relevant parties. In particular, I want to proceed in partnership with the Minister for Justice, Equality and Law Reform and to reflect on the meeting last week. I have been in discussion with the Attorney General and I will revert back to Government with proposals on this issue and to the Oireachtas.

Ms O. Mitchell

I wish to share time with Deputy Neville.

An Leas-Cheann Comhairle

Is that agreed? Agreed.

Ms O. Mitchell

I welcome the opportunity to speak on this issue again. I congratulate those who tabled the motion. However, I feel I am speaking in a vacuum not knowing what is in the interim report. In looking at where we go from here, it is useful to know how far we have got. The inquiry was set up 18 months ago and will run for two or possibly three years. I am glad the Minister recognises it is not reasonable for any inquiry to run that long or for the parents to wait for explanations for that period. We have heard described eloquently by others the trauma of the death of a child, the insensitivity with which people were treated at the time of the death of their child, that some found out later that their children's organs were removed without their consent and that they were retained sometimes for periods beyond which anyone could consider reasonable or decent.

Those parents, having gone through that experience, are entitled to a resolution to ease their grief and get on with their lives. If they have to wait for an inquiry that may go on for five years before the public statutory process is undertaken, that is unreasonable, apart from the issue of the cost of such an inquiry, which would be obscene. I have serious doubts, and I detect in the Minister similar doubts, about the direction in which this inquiry is going, whether it is going in the direction intended. My understanding is that a case by case history is being sought from each hospital. If that is the case the process will continue for ever. I admit the terms of reference enable the judge to go down that road but only where it is deemed necessary. The primary terms of reference are to examine the policy and practices in hospitals relating to obtaining consent for post mortem, organ removal, retention, storage and disposal and to examine the hospitals procedures relating to retained organs, including any arrangements for pharmaceutical companies. Surely with a finite number of hospitals in the country and with reasonable co-operation, that information could be gathered relatively quickly. If a case by case examination is necessary it should only be undertaken where individual doctors or pathologists within the same hospital operate different procedures.

An investigation is about establishing the facts and this one, particularly given its terms of reference, is about establishing the facts and making recommendations for change. That is what we want from an inquiry. The inquiry process should not be adversarial. It does not require banks of lawyers or years of investigation. Vengeance and retribution is not sought by the parents. The purpose is to examine policies, practices and procedures for dealing with what is an emotive and sensitive issue, particularly with the giving of informed consent at a time of huge trauma for families. This is probably the most traumatic event that can happen to any family.

Most people accept there was no deliberate malfeasance in this matter but there was huge insensitivity, lack of communication and an absence of clearly understood and commonly applied procedures and protocols. Nobody questions the need for post mortems to determine the cause of death and to facilitate valuable and essential medical research. Organ retention is essential for similar purposes. Sometimes organs and tissue have to be retained for long periods but none of this should happen without informed consent.

I fully support the motion which calls for a bereavement officer to be available always in the case of a death to counsel parents and ensure they absorb the implications of what is involved in a post mortem from the moment their child dies until the death certificate is issued. The need for agreed procedures on what happens at this time is paramount. It is paramount for the parents of children who have died in the past and for the parents whose children will die. It is also paramount for doctors, pathologists and hospitals who need the protection of clarity of procedure. They also need the support of trained counsellors. While doctors have many talents they are not renowned for their communication skills. The Minister referred to huge insensitivity on the part of doctors. They also need help at that critical time.

We all know when under stress, in any circumstance, we forget the most important questions. We do not come away with the full picture. We are sorry we did not remember to ask questions. That is when help is needed. That is when parents and doctors must be helped to clarify all the implications. Most people want to co-operate with medical research. Some would find consolation in thinking that something good may come out of what was a terrible event for them, namely, that another child might benefit.

Given the climate of fear of litigation doctors tend to be less forthcoming than they might otherwise be. It predisposes them, whether consciously or subconsciously, to give the minimum information. For doctors and all of us, the era of keeping the public in the dark and having the attitude that "we know best" is gone.

This inquiry, if it continues on the path on which it appears to be going, will get us nowhere and will prolong the anguish of parents who have already put up with enough. I am pleased the Minister is, at least, thinking along the lines of a new approach. Perhaps a tribunal of inquiry or other public inquiry is the right way to proceed if the Dáil so decides, but having spent the past few weeks reading the Lindsay tribunal report, I am not convinced it is the way to find out the truth of any matter without very tight terms of reference. Perhaps the way to proceed is to have a public open forum chaired by a senior official from the Department who would examine the deficiencies of existing practice, represent all interested parties and make recommendations for the introduction of regulations to change existing practices and protocols. It could include, for instance, the Parents for Justice group, pathologists, doctors, hospital managers, the legal profession, research and pharmaceutical companies and even the churches, all of which may have a role in examining the whole process from the time of death to the time a death certificate is issued. There is a lack of clarity around this whole area, particularly when a post mortem is required by law but merely regarded as something that might be useful. I do not know whether the Minister is aware of it, but the practice in this area is fudged. It is sometimes a question of ringing around to see if anyone will sign a death certificate in order that a post mortem will not be necessary.

There are also legal problems surrounding the issue of consent. Nobody is entitled to own a body, yet in certain circumstances we require the consent of the next of kin for a post mortem to take place. There can even be doubt about who should be regarded as the next of kin in that one parent may agree to a post mortem while the other may not. Whose consent is required in such cases? These are all grey areas that need to be clarified.

The area that most perturbed and upset the parents affected, and every member of the public, was the revelation of the removal of pituitary glands, and I understand other body parts, for the purpose of drug manufacture. I am aware money changed hands, but nobody believes this was done for anything other than the best motivations. However, serious ethical considerations arise and strong regulation is required.

The issue of organ and tissue disposal, and what is appropriate, also needs to be resolved. For instance, for ethical, public health and human dignity reasons, should there be different procedures for disposing of organ and body parts from living persons as part of a medical procedure? Should these procedures be different from the treatment accorded to body parts, organs or tissue from adults or children who have died? How long is it considered reasonable to retain such organs, and in what circumstances and conditions? The ultimate method of disposal also needs to be clarified. I understand body parts fixed in formaldehyde are now regarded as hazardous waste and, under law, have to be disposed of as such. That is a further complication that we did not have in the past and something that will have to be examined. Is this practice entirely appropriate in all cases?

Setting up a forum which could make recommendations that would feed into legislation, such as a human tissue Bill, is one possible way forward, but whatever we do, there can be no flexibility on the issue of informed consent, which is essential to this whole inquiry. In the absence of informed consent, the Parents for Justice group want to know the identity of those who authorised organ retention in the past. The individual or procedure whereby authorisation was given – I suspect it was not always explicit authorisation but implicit authorisation – should be known by now. There is a finite number of hospitals involved and the information, if available, should feed into the next stage of the process.

It is important that we move on to the next stage of the process. We cannot have an inquiry wandering on for years, we know not where, and then end up with another type of inquiry whose format we have not yet decided. This whole episode has bred hostility to giving consent for the carrying out of autopsies and also led to a marked increase in reluctance to permit the harvesting of organs for essential transplants, of which I am sure the Minister is aware. It is in nobody's interests to let this issue drag on unresolved. All that is required is some mechanism to ensure we treat the living and their dead with dignity in this whole process.

Mr. Neville

How much time do I have?

An Leas-Cheann Comhairle

The time remaining in the slot is 16 minutes.

Mr. Neville

May I share three minutes of my time with Deputy Durkan?

An Leas-Cheann Comhairle

That three minutes will probably be taken tomorrow.

Mr. Durkan

That is okay.

Mr. Neville

I support this important motion and congratulate the Technical Group for bringing it forward. There is no doubt that the death of a child is extremely traumatic. In the normal course of life we expect our children to outlive us. I believe such trauma has visited the Minister's family and he has our deepest sympathy in that regard.

I work in the area of suicide and have met many families who have seen their children go before them. I am keenly aware that it is against nature for a child to die, but the insensitivity and grief visited on the families of those involved with Parents for Justice are totally unacceptable and beyond comprehension. A family visited me over a period of weeks because they were extremely concerned about the situation in my area and I came close to experiencing their fear and emotion until they found out whether their child's organs had been retained. They had not been retained, but there remained a level of doubt in their minds, even though the authorities were satisfied that no organs had been retained. I experienced at first hand the insensitivity, trauma and emotion visited upon the family in question. It is difficult for someone who has never been touched by this to understand the intense emotions experienced by those concerned about the retention of their late child's organs. In addition, there was a sense of a total revisiting of the bereavement they had experienced years previously and they relived the loss of the child. In a normal bereavement one eventually moves on, but they revisited all the feelings surrounding the bereavement as a result of this process.

The Parents for Justice group, which was formed in December 1999, has done excellent work in creating an avenue for the parents concerned to express their views and have their concerns examined. The fact that they now lack confidence in the Dunne inquiry must force us to examine this matter carefully. We have the utmost confidence in Parents for Justice because of their sincerity and experience, yet the Minister has said they no longer have confidence in the inquiry. We must respond carefully to this. They want a statutory inquiry and have good reasons for making such a request. It is not just another group that does not like what is happening. The members have told us their concerns about the confidentiality undertaking that must be signed by all those dealing with the Dunne inquiry but had not been signed by some of the members. The group was concerned that it would be excluded from the work of the inquiry. It now seeks a statutory public inquiry because it has the power to compel witnesses and order the production of documents. We must listen carefully to its concerns.

There is much concern about the second phase. We have covered this ground before, but there has been a Supreme Court decision on the Abbeylara affair which severely limits the power and effectiveness of Oireachtas committees in dealing with cases such as this. Something has gone wrong if a process that was expected to be completed in 18 months must now take up to four years. I would question the credibility of an inquiry if, after setting terms of reference and a timeframe, it was found that the expected time had more than doubled. I am not questioning the credibility of the people involved but the credibility of the process.

The key issue is consent, which was not sought for any of the retentions. Consent is the legal expression of autonomy. A person has the right to offer or refuse consent to a treatment, procedure or request, in this case, for the retention of organs. Consent has its own autonomy and there is a right to accept or reject the request. Set against this there has been the historical scope given to medical practitioners to judge the amount of information needed to enable a patient to give valid consent. As we move from an age of paternalistic health care to one of shared decision-making with the patient, the patient is now seen as a consumer and someone whose consent should be sought and who should have all aspects of procedures and interventions in his or her life fully explained so that it may be understood. Informed consent is the making of a rational and intelligent choice about whether to submit to a proposed treatment or procedure. To make this decision a patient, or in this case a parent or next of kin, needs to be given adequate details of all aspects of what is happening.

The original issue was the retention of organs after post mortem examinations for research and teaching purposes. This practice is reasonable provided the consent of the next of kin or parent is obtained. Information was the crucial missing factor. The second issue is the provision of pituitary glands to a pharmaceutical company, without the parents' consent, for research on growth hormone. This may be seen as a reasonable thing to do because it could be beneficial to children who are short of stature. Again, consent was not sought and information was not given to the people involved about what was going on. Consent and information is crucial. The third issue concerns the sale from some maternity hospitals of placentas to companies engaged in the manufacture of cosmetics. The practice may be seen as grotesque, depending on one's point of view, but it was hidden. We do not know whether mothers would have objected to the practice at the time because nobody told them about it and their consent was not sought.

Of a different order were the revelations by St. James's Hospital that foetuses under 28 weeks of gestation were dealt with by a process of special incineration, similar to cremation. The hospital goes on to say that during the early 1980s recognition became widespread that women who suffered a miscarriage or stillbirth needed special support or counselling. We discussed this some years ago when we brought in the Bill which allowed for the registration of stillbirths. At that time we discovered that the traumatic event of stillbirth was being ignored by society. We were informed of how traumatic the bereavement of a stillbirth was to a mother, a father and a family. Here we see that women who had suffered miscarriages and stillbirths actually saw their foetuses incinerated. We are told that public attitudes were different at that time but had the public known what was happening, would attitudes and practices have changed earlier? If the information had been out there those practices would not have continued.

What Parents for Justice need, as was said earlier, is truth and justice. Its members feel that the present inquiry will not give them the full truth. They do not feel that justice will be fully served through that forum and they want a statutory inquiry. The Minister must revisit his views on that immediately. Confidence has been lost. Most speakers mentioned bereavement officers. It is a very important area in which some work has been done in recent years, but much has still to be done. People generally do not understand, even when they experience it, the process of bereavement and the different stages and emotions involved. Bereavement counselling is a positive development and helpful to those who access it. People need it in different ways: some need intense counselling, others only brief counselling.

There are two common bereavement situations. One is the loss of a parent who is well advanced in years. This is a normal process. Grief is natural and can be taken care of reasonably because it is the natural course of things. Then there is bereavement as the result of an accident in which somebody dies, which is more intense. I have already dealt with the loss of a child and loss due to suicide. All of these are distinct types of experiences with different intensities for different people. It is a very important area that is not fully understood and should be taken into consideration by the health boards. I suggest a bereavement officer for each hospital or at least a few in each health board area. Some health boards, including my local health board, offer suicide counselling and in my experience those who access it find it extremely helpful. It has been successful in bringing many families through very sad bereavements.

Mr. Durkan

Nothing evokes greater concern and compassion among people than the death of a child. The countless families that have had that unfortunate and tragic experience are the only ones who know at first hand the agony and trauma that has been suffered by the parents who are still pursuing their objective of finding the truth. I know the Minister is anxious to facilitate them and everything must be done to address the valid issues they have raised.

Debate adjourned.