Press Release

Publication of Report of Dr Deirdre Madden on Post Mortem Practice and Procedures

The Tánaiste and Minister for Health and Children, Mary Harney TD today (18th January, 2006) published The Report of Dr Deirdre Madden on Post Mortem Practice and Procedures following its consideration by Government at their meeting this morning.

In May, 2005, the Government approved the appointment of Dr Deirdre Madden, a distinguished legal expert, to produce a report on post mortem practice and procedures. In her Report published today Dr Madden sets out the facts relating to post mortem practice in relation to children born alive and under 12 years between 1970 and 2000.

Speaking at the publication of the Report the Tánaiste said: “I wish to thank Dr Madden for producing such a robust report. I agree with Dr Madden that the death of a loved one is probably the most difficult event any of us will experience in our lifetime and the death of a child must bring particular heartbreak”.

“Bereavement brings with it a range of strong emotions. When the news about organ retention first made the headlines in 1999 and 2000 parents and next of kin rightly experienced further shock, anger and betrayal. Since then they have been waiting for the facts in an attempt to come to terms with their loss. I am hopeful that Dr Madden’s Report will answer the questions of parents and next of kin although it will never erase the lifelong sorrow and loss”.

A central telephone support helpline will be launched tomorrow, 19th January by the HSE in order to deal with issues that arise for next of kin as a result of media coverage and details contained in the report. The number of this line, which will operate from 8 a.m. to 8 p.m. Monday to Friday is 1850241850.

The key findings in the report are:

Post-mortem examinations were carried out according to best professional and international standards and no intentional disrespect was shown to deceased children or their families.

Communication between hospital staff and parents and next of kin was poor, with people not being told that organs might be retained at a post-mortem. This was often done for paternalistic reasons, where doctors did not wish to upset next of kin when they were already distressed and vulnerable.

There was no legislative framework in place and no consistent national policy relating to these practices. However, the lack of a national policy on post mortem practice until 2002 is not unique to Ireland, nor was it the usual practice in other countries to provide information about organ retention to relatives of a deceased person.

The system of disposal of organs and tissues by hospitals was not intentionally disrespectful to children or their families. Hospitals were constrained by health and safety regulations and were obliged to consider organs and tissues as clinical waste.

Between 1976 and 1988, almost 14,000 pituitary glands were collected in hospitals and supplied to two pharmaceutical companies for the manufacture of human growth hormone. (Around 10% were collected from children, with the balance from adults). The practice ceased when a synthetic product was developed.

The motivation for collection of glands was “for a positive medical and public benefit, notwithstanding the lack of specific consent for retention and use of the glands”.

Hospitals were paid modest amounts for the additional work undertaken to remove the pituitary glands. There was no known commercial motive on the part of any hospital or its staff in the supply of glands to the companies.

Recommendations

Dr Madden says that “the best resolution of this issue for bereaved parents is to enact clear and unambiguous legislation to ensure that such practices cannot happen again in the future without their knowledge and authorization”.

The Report contains 50 recommendations. It notes that while a number of recommendations relate to other post mortems, namely those carried out on babies who have died before or during birth, minors and adults, a Working Group should be established, to ensure that there is appropriate adaptation of legislation, policy and procedures in relation to the distinct legal and ethical issues that were not within Dr Madden’s terms of reference.

The Tánaiste said

“I want to work with relevant representative groups to ensure effective implementation of Dr Madden’s recommendations”.

“My Department’s officials will examine each of the 50 recommendations in consultation with relevant bodies, especially the National Hospitals Office of the Health Service Executive.”

“Some of the recommendations are exclusively the remit of my Department, (e.g. the formulation of human tissue legislation), and others of the HSE (e.g. an audit of organs retained in hospitals) and other agencies (e.g. Coroners Act is Department of Justice Equality and Law Reform). I have asked for an action plan to be prepared for implementation of the recommendations and progress made on implementation will be closely monitored, with a report being provided to me as soon as possible”.

“As recommended by Dr Madden I have agreed to set up the Working Group to examine issues not covered under the terms of reference of the Report, dealing with babies who died before or during birth, minors over 12 years and adults”.

Dr. Madden’s Report will be sent to the Oireachtas Committee on Health and Children. The Report will be circulated to all interested parties, including the National Hospitals Office of the Health Service Executive, the Department of Justice Equality and Law Reform (which has responsibility for the Coroners Service) the Faculty of Pathology, General Practitioners, medical education and research facilities and parents and patients groups. The Report will be available on the Department’s website or copies can be obtained from the Department’s Customer Service Desk.

Read the report (PDF, 673 kb)