The Tánaiste and Minister for Health and Children,
Mary Harney TD published (18 January 2006) 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 at www.dohc.ie or copies can be obtained from the
Department's Customer Service Desk.
The report is available online.
Biography of Dr Deirdre Madden
Dr Deirdre Madden is a graduate of UCC (BCL 1987; LLM 1988; PhD 2000)
and was called to the Bar in 1989. She has been a lecturer in the UCC
Law Faculty since 1992.
Dr Madden's research interests are in the area of medical law and
ethics. Her publications include a book entitled "Medicine, Ethics and
the Law" (2002). She has been a Visiting Professor in the United States
on a number of occasions.
Dr Madden was appointed by the Minister for Health and Children to the
Commission on Assisted Human Reproduction in 2000. She has also been a
member of the Research Ethics Committee of the Irish College of General
Practitioners, and the Expert Evaluation Panel on Bioethics for the
European Commission. Dr. Madden was appointed to the Medical Council in
August 2004 for a five-year term to represent the public interest.
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