Personal views: Getting consent for autopsies: who should ask what, and why?
Authors: Gwen M Sayers, James Mair
Journal: BMJ (2001)

In the wake of the Alder Hey scandal, our trust, along with others, has produced a new and explicit consent form for autopsies.


Forty years of custom dictates that we, as clinicians, approach relatives shortly after a patient's death in order to obtain consent for an autopsy. Our reason for the request is to ascertain definitively the cause of death, and so provide answers to diagnostic questions that we could not answer while the patient was still alive. 


Relatives are asked to consider tissues, fluids, and organs in the way that they might select football teams on a pools form



The consent form immediately addresses this issue with a clause stating: “I understand that this examination is being carried out to verify the cause of death and study the reasons.” We make clear that, as part of this examination, small tissue samples or fluids will be taken for microscopic examination.

The grieving relatives are now moved on to consider a number of apparently unrelated options. They are asked to choose which whole organs, if any, are retained. They are given the option of objecting or not objecting to any organs being retained. Alternatively they can object to, and list, certain organs of their choice being retained. If they are unclear as to the terms of reference, we will have to explain that they can, for example, choose to keep the liver but have the spleen kept by us. 

They are then informed that following the autopsy the organs must be disposed of in a lawful way. They are given the option of the organs being reunited with the body before it is released, even though this may delay the funeral. Alternatively, they can arrange for the organs to be disposed of by the funeral director, or they can request that the hospital dispose of the organs in a “lawful and respectful way.”

Finally, they are asked to agree or disagree to some tissue, fluids, or organs being taken and held for an unlimited time for medical research and education. As before, their choices are: not object to any; to object to any; or to object to their own selection of specific organs, tissues, or fluids being taken, which they are invited to “list below.”

On the face of it such a form appears to leave little room for ambivalence, criticism, or later complaint. However, from a human and ethical perspective it introduces a host of new problems.

Doctors are expected to be sensitive. Dealing with bereaved relatives calls for compassion and fully tests communication skills. Working through the type of consent now required for autopsies is a legalistic and clerical business with no place for recognition of the deceased patient as a person. The relatives are asked to consider tissues, fluids, and organs and what will happen to them in the way that they might select football teams on a pools form. If the relatives retain any emotional connection with the deceased (and most do), it is likely that they would be shocked at having to contemplate the possible fate of the constituent parts of their loved one.

We have found that the only way of dealing with the practicalities of completing the form is to ask relatives to read it themselves and fill in the check boxes as they see fit. This may amount to a cop-out, but it seems a pragmatic solution given the likely level of discomfort—both the relatives' and ours.

As clinicians faced with a diagnostic problem, our agenda does not include tissue retention other than specimens necessary for histology, and a simple autopsy-only consent would suffice. If, during an autopsy, organs are seen to be of interest for student teaching, or if tissue is required for ongoing research projects, surely it should be for the pathologist or researcher to obtain further consent to specific retention of such tissues, organs, or fluids? In this way the relative would know the precise reason for retaining the material, consent would then be fully informed, and the clinician would not be put in the uncomfortable position of having to obtain an arguably invalid consent for umbrella, and hence ambiguous, purposes.