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Perinatal Pathology - Consent Form

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Post Mortem
Consent Form

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It was felt that much of the controversy surrounding Alder Hey arose because of the poor standard of the consent form. The Department of Health (Reference1) (DOH) published the results (December 2000) from a national study investigating how hospitals around the country obtain agreement from relatives for post-mortems. 167 hospital trusts, with pathology services, participated.

The main conclusion drawn from the study was the lack of clear explanations about the nature of the examination. 'Clarity is the key' but not at the risk of making the form too long and overwhelming, requiring parents to make numerous decisions.

Some of the main criticisms from this study are outlined below:

Wording of the form.

  • The standard form states that the examination 'may' involve the retention of tissue for laboratory study when this is agreed to be a standard procedure. The use of 'may' is therefore misleading.
  • The word tissue is not clearly defined. Some of the investigators felt this would imply external tissue rather than internal tissue. It was also being used to include organs, without making this clear. College guidelines state that…..'Ethically, it is important that any tissue retained must match the relatives' perception of what they agreed to being retained and its purpose.'

Minimal information regarding the purpose of the examination

These have been outlined above.

Lack of clear options for relatives

There was no indication on many of the forms that the relatives could limit the post-mortem if they so wished. A suggestion from the Forum is that we could offer 'packages'. These would outline different options that are available and their implications. It should be clear though that a limited post-mortem would therefore limit the findings available for the parents and may miss vital information in the diagnosis.

Absence of information about storage and disposal of retained tissue or organs

  • This should deal with the issue of tissue being stored as wax blocks of tissue and slides that are archived and retained for possible future reference.
  • To avoid the need for repeat consents, the option of organs/tissue being used for medical research and education needs to be clarified and consented for.
  • The option for organs to be returned to the body for the purposes of funeral, although a time delay may be involved. For instance, a fetal brain is very difficult to examine and is usually placed in preserving fluid for up to a week before examination.
  • Options for disposal: burial, cremation and funeral arrangements. This is a more difficult area when dealing with fetuses that have been miscarried in the first trimester and may only measure a few centimetres in length. Protocols need to be in place for these situations. Does an ectopic specimen require a consent form for example? The College of Pathologists do state in their guidelines that 'parental agreement must be obtained 'regardless of gestational age' although interestingly, the HTA 1961 (Human Tissue Act) only strictly applies to those who were born alive.


  • Clear and unambiguous language
  • To provide an information leaflet to the parents to accompany the consent form
  • To give a copy of the agreement to the parents
  • To offer a package of options for parental consent



This is an important area that requires legal, ethical and emotional understanding by staff involved. Sadly, Alder Hey has made it obvious that our consent forms are lacking in detail and need to be updated and clarified. There is, at present, no specific consent form dealing with the perinatal post-mortem. We are aiming to have a follow-up Forum on this subject to see the improvements and adjustments made in the wake of the Alder Hey investigations. This is a subject that should be reviewed periodically.


1. Consent to organ and tissue retention at post-mortem examination and disposal of human materials. Department of Health publication. December 2000
2. The Fetal and Infant Post-mortem: Brief notes for the professional. CESDI publication 1998 (please note that this is in the process of being reviewed)

Further information

1. Stillbirth and Neonatal Death Society (SANDS) 0207 436 5881
2. The Foundation for the Study of Infant Deaths (FSID) 0207 235 1721
3. Antenatal Results and Choices 0207 631 028/439 6124

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