Recommendations
Chapter 11. Consent
1. Consent to Post Mortem Examination of Children
1.1 In the preceding Chapter we concluded that fully informed
consent is required and nothing less. Fully informed consent must
be freely given without imposition of pressure. It is the application
of basic principles of respect for the person, their welfare and
wishes.
1.2 Comprehensive information is required to obtain a valid
consent. Parents must be informed of the identity of each organ
to be retained and the purpose for which it is to be used. Dr Peart,
a Consultant Paediatric Cardiologist at Alder Hey, accepts that
consent forms must be specific about every organ to be retained.
Blanket consent is inadequate for organs but is worthy of further
consideration with regard to the retention of small tissue samples
for diagnostic purposes, medical education and research.
1.3 Fully informed consent means that a person must have
all the information required to form a final decision. It is not
enough for clinicians to tell the next of kin that they would like
to examine the body after death and this might involve taking some
tissue. The next of kin need to understand what is involved in a
post mortem examination, including a description of whole body systems,
removal of the brain and the steps necessary to remove various organs,
no matter how distasteful the giving of this information might be
to the clinician concerned.
1.4 Paternalism is defined in the Concise Oxford Dictionary
as follows:
‘the policy of restricting the freedom and responsibilities
of ones dependents in their supposed best interest’.
1.5 We accept that for some clinicians it might be unpleasant
to provide the detailed information necessary to obtain consent.
However, their responsibility cannot be avoided. A practical test
for the clinician in considering whether he has given full information
is to question whether any significant detail not mentioned could
have led to a different decision by the next of kin. If so, then
the test for fully informed consent will not been met.
1.6 The issue of consent arises at a time of extreme grief.
Nevertheless, a post mortem examination should be completed as soon
as possible to obtain the best clinical results. It is not possible
to allow sufficient time to assuage grief. Therefore, consent must
be discussed with sensitivity, openness and the necessary detail
to enable clinicians to discharge their duty.
1.7 Clinicians agree that they are best placed to obtain
fully informed consent. With proper training, they should be able
to communicate effectively and sympathetically with the necessary
medical knowledge to inform the next of kin. They must understand
the value and process of post mortem examination in the clinical
setting and also what it means for relatives. We regard it as best
clinical practice for clinicians to work closely with pathologists
who can assist in determining which organs should be retained for
the relevant purposes. They can also assist parents in providing
detail relating to the cause of death.
1.8 The general public should be educated to understand how
human tissue is stored and archived as an ongoing resource for the
general benefit of society. For example, the general population
benefits from a better understanding of disease and more effective
treatment becomes available. The annual influenza epidemic is better
managed now than ever before. Researchers are able to access archives
to study a previous particular strain of influenza virus and can
therefore improve preventative treatment when that strain reappears
in any particular year.
1.9 If the Liverpool experience represents general practice
there must be substantial archives of human material at various
locations around the country, most of which have been obtained unlawfully.
We cannot undo the wrongs perpetrated in obtaining that material,
but can now consider what should happen in the future. In relation
to retained organs or tissue it is the right of surviving relatives
to request respectful disposal, and they must be given that opportunity.
If relatives do not demand respectful disposal now this material
may be of great value to society, if it is used for research and
education in the future.
