AUTHORISATION FOR THE HOSPITAL POST-MORTEM EXAMINATION OF AN ADULT
This form and the information leaflet that goes with it are:
Please read the accompanying information leaflet very carefully.
The information leaflet you have been given is a short one, giving important
general information. There is another information leaflet if you wish to be
given more detailed information and you will be asked if you wish to have this
leaflet as well. If there is anything you do not understand, or want to know
more about, please ask the hospital staff.
If you decide to authorise a post-mortem examination, please complete this form in discussion with the hospital staff, and check that all the information on this form is right. If it is, sign your name at the end of the form. The member of hospital staff who has discussed the examination with you will sign the form as well, and give you a copy to keep.
You should take as long as you need to think about whether you wish to authorise a post-mortem examination and what you would want to happen afterwards. Please note: the post-mortem examination may take place later on the same day on which you give your authorisation.
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Box for Contact Details
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NOTES
1. If organs are not to be retained, section 2 must be scored through.
2. One copy of the completed form should be given to the nominated representative/nearest relative, one copy retained in the patient record and a copy given to the pathologist who will perform the post-mortem examination that has been authorised.
3. Information leaflet(s) should also be provided to the nominated representative/nearest relative, and a note of which version of leaflet was given retained in the patient record.
4. If any part of the authorisation is withdrawn within the time limit agreed, all copies of the form should be amended with the date the authorisations are withdrawn and a clear statement who is amending the record and on what evidence, e.g. letter, telephone conversation, etc.
5. If any procedures or uses of material are envisaged which are not pre-printed on this form, separate authorisation MUST be obtained for these and recorded in section 3. In particular, if any extra tissue is to be taken at post-mortem examination for use in research, specific authorisation for this must be documented in section 3.
6. Permission to seek authorisation from a person other than the deceased's nominated representative/nearest relative should only be taken over the telephone exceptionally. All possible steps should be taken to verify the identity of the person whose permission to appoint a substitute is being sought. This discussion must be witnessed by another member of staff.
THE HOSPITAL POST-MORTEM EXAMINATION OF AN ADULT - BASIC INFORMATION LEAFLET
Summary
The post-mortem examination is an important medical examination to find the cause of a person's death.
The person's own wishes about whether or not post-mortem examination should take priority.
If the person asked someone else to make such decisions (a nominated representative), he or she will be asked to consider authorising a post-mortem examination.
If the deceased left no instructions and there is no nominated representative, the nearest relative will be asked whether he or she wishes to authorise a post-mortem examination. There are rules that set out who the nearest relative is.
Ideally the post-mortem examination should take place within a day or two of death.
The person's face, hands and feet are not normally affected by the post-mortem examination.
Relatives should be able to see the body again after the post-mortem examination.
The final results of the examination will usually be available in 21 days and a copy is sent to the deceased's general practitioner. Unless the deceased did not wish this, a copy of the report can be requested by the nominated representative/nearest relative.
Whole organs will only be kept if this was the deceased person's wish or we have authorisation from the nominated representative/nearest relative.
If the nominated representative/nearest relative does not wish to authorise a full post-mortem examination, there may be other tests that may be done. This should be discussed with hospital staff.
Ask as many questions as you wish.
Information about an adult's post-mortem examination
We understand that this is a difficult time for you and it may be hard to consider a post-mortem examination. This leaflet has been written (with the help of bereaved relatives) to give you clear information about the reasons for doing a post-mortem examination and what you would need to decide.
About the authorisation form
Unless it has been ordered by the Procurator Fiscal, the doctors need authorisation before they can carry out a post-mortem examination. If the deceased has left clear instructions that he or she authorises a post-mortem examination and what can be done with his or her body, then these instructions take priority. If he or she had authorised a post-mortem examination, it can take place even if relatives object.
The deceased may have chosen someone else to make such decisions instead. If the hospital knows who this person is, he or she would be the deceased's nominated representative and would be asked whether or not a post-mortem examination should go ahead. The nominated representative can authorise a post-mortem examination even if relatives object.
If the deceased left no instructions and did not nominate someone else to make these kinds of decision, the nearest relative will be the person who is asked to consider authorising a post-mortem examination. There are rules which set out who the nearest relative is and these will be explained to you. You should let hospital staff know if you think there is a nearer relative than you, or if there are other people who you think should be involved in making this kind of decision.
If you have been given this form it is because the hospital thinks you are the deceased's nominated representative or nearest relative and that you are the person who should be asked whether or not to authorise a post-mortem examination. A written record of your decision makes it clear to everyone what you have, and have not, agreed to. If you change your mind before the post-mortem has taken place you can withdraw your authorisation - even after signing. The hospital staff will tell you how much time you have in which to do this, and who you should contact.
Important: before going on with this leaflet, if you are not sure whether you are the person who should be asked to authorise post-mortem examination, because you are not sure you are the person's nominated representative or nearest relative, please explain this and check with hospital staff.
What do I need to know?
People have different views on how much information they want about a post-mortem examination. You should ask as many questions and read as much information as you want.
You may not want to know any more about the post-mortem examination, but would still be willing to authorise it. If, on the other hand, you would like more detail or would like to discuss it with another health professional (such as a pathologist), please ask. There is a second leaflet with more detailed information about what is involved in post-mortem examinations. Let us know if you want to have this.
Why do a post-mortem examination?
A post-mortem examination can provide information about the illness or other cause of a person's death. Sometimes families ask questions that can only be answered with information from a post-mortem examination. It is also possible that the information gained may benefit other families who suffer from similar problems in the future. The post-mortem findings are also very important for the staff who cared for the person who has died. They can use the knowledge to learn about disease and possibly help others in the future. However, even a post-mortem examination can not always provide a reason for the death. The main reasons for a post-mortem examination are to:
Section 1: Authorisation of a post-mortem examination
What happens in a full post-mortem examination? (Section 1a)
A full post-mortem examination includes an external and an internal examination. It is done with the same care that would be used if the person were having an operation. If you wish to have a more detailed explanation of a full post-mortem examination, please see the other booklet. Small tissue blocks and slides, photographs and X-rays will be made and may be kept as part of the medical record. The person's face, hands and feet will not normally be affected by the examination and you should be able to see the body afterwards if you wish.
Are there different options available? (Section 1b)
If you do not want to agree to a full post-mortem examination, you might consider a limited examination. The doctor or other health professional who discusses the post-mortem with you will be able to explain what the options are. Usually, it means that only certain parts of the body are examined. Tissue block samples and slides, photographs and X-rays may be made in the same way as for a full post-mortem examination.
However, limited examinations provide only limited information about cause of death or illness. A full post-mortem examination will always provide more information. Hospital staff may advise that a limited examination would not provide any useful information and so should not be undertaken.
Since the person's own wishes about what he or she wished to happen have most importance, you will be asked if you know whether the deceased left any instructions about post-mortem examination, or if you think he or she would have objected to it. If there were instructions, these will be checked and if the deceased would have objected then the post-mortem examination would not take place.
When is a post-mortem done?
Post-mortem examinations are usually carried out within 1-3 working days of death occurring. They take place in the mortuary. If because of the person's religion the funeral must be within 24 hours, please let us know; we will try to undertake the post-mortem within this time.
What happens in a post-mortem examination?
A post-mortem examination is done with the same care that would be used in an operation. It includes an external and an internal examination. If you wish a detailed explanation, please see the other booklet. The person's face, hands and feet will not normally be affected by the examination.
Section 1: Authorisation of uses of the medical record
What can be done with the medical record?
Tissue blocks and slides, photographs, X-rays and other images taken during the post-mortem examination will form part of the person's medical record. Unless the deceased had objected to information being shared with the family, they may be useful for the family in future, for example, to diagnose conditions in other family members or if more information becomes available about the condition the person may have had.
They could also be used for medical education and audit. Medical education includes teaching and training all types of doctors, nurses and health professionals so they can provide the best care for patients in the future. Audit means checking the quality of care, procedures and tests to make sure they continue to meet the highest standards.
The medical record can also be used for medical research that may benefit other patients. For example, when a new disease or health problem emerges, examining tissue on a wide scale may provide clues about how and why the disease emerged - and how to respond. This happened with the disease known as variant CJD after the BSE scare in cattle.
If any photographs could identify the person, you would be asked specifically for your permission before they are used unless the deceased person had authorised this use. If extra tissue or images are requested specifically for education, audit or research you would be asked to give separate permission for this, again unless the person had authorised this to be done.
What are tissue samples, blocks and slides?
Although some information can be obtained from looking directly at organs and tissues in a post-mortem examination, often the only way to understand properly what has happened is to look at small tissue samples under the microscope. These samples are very small, slightly thicker but no larger than a standard postage stamp. (For more detailed information please see the second leaflet.)
Section 2: Retention and examination of organs
Will any organs be kept?
There may be benefits in keeping a whole organ to carry out a more detailed examination. This will usually be the case if there is an abnormality of the brain, but sometimes the pathologist may need to examine a heart or other organs with an abnormality. Organs will not be retained without the deceased's or your authorisation. (For more information on retention and examination of organs, see the second leaflet. )
If this is discussed with you, there are a number of other options to consider, such as what happens to the organs afterwards. If the person had left instructions about these matters, the hospital will follow these instructions.
Section 3: Other requests or conditions
Can I make any conditions?
If you wish to make any special request or condition, please say so in Section 3, for example, if there are religious requirements that you need to have followed or you wish to allow some organs to be used for research but not others.
What happens after the examination has been completed?
Great care is taken during and after the examination so that the body can be seen after the examination and dressed in his/her clothes. The skin and colouring will naturally change after death whether or not a post-mortem examination has been carried out.
Can I find out the results of the post-mortem examination?
Yes, unless the deceased wished his or her medical information to remain confidential. The pathologist will write a preliminary report within 2 days but some tests may take a few weeks, and a final report will be sent to the doctor who had been caring for the person within 21 days. A copy will be sent to the deceased's general practitioner (GP). You may be offered an appointment to discuss the results, or you may wish to see the GP. You can ask for a copy of the report.
What should I know before deciding?
You should take as much time as you require to make a decision although in practice there is a time limit because of changes that take place after death naturally. Also some tests are better done sooner rather than later (see summary). The hospital staff should make sure you have enough information to decide whether you wish to give your authorisation. They will discuss the alternatives with you. Although they may recommend a particular option, it is important that you understand and come to your own decision. They will ask you to say whether you have understood the information you have been given. If you are not sure, say so.
If you change your mind before the post-mortem examination has taken place you can withdraw your authorisation. The hospital staff will tell you how much time you have in which to do this, and who you should contact. If you give your permission for use of the medical record or organs, permission can be withdrawn at any time unless the medical records or organs have already been used for authorised purposes. Again, you will be told who you should contact.
We hope this information is helpful but please ask if there is more information you need.
THE HOSPITAL POST-MORTEM EXAMINATION OF AN ADULT - FURTHER INFORMATION LEAFLET
Index
1) Post-mortem examination
2) Tissue samples, blocks and slides
3) Uses of the medical record
4) Genetic testing
5) Organ retention
6) Conditions and requests
7) Standards
8) Disagreement about post-mortem examination
9) Further information
This booklet is intended to be read along with the basic information leaflet (1) and contains more information about the post-mortem examination itself, retention of organs and tissue blocks and slides and the uses of the medical record.
1. What happens in a post-mortem examination?
A post-mortem examination is not just an internal examination, but includes the clinical history, photography, X-rays and external examination as well as many possible tests including virology (the study of viruses), bacteriology (the study of bacteria) and genetic investigations (which can vary from chromosome examination to identification of a specific gene). Some of these tests are only very rarely done during a post-mortem examination on an adult.
The body will have a careful external examination. There will then be two openings made to examine the internal organs, one in the chest and abdomen and one on the back of the head. This allows the pathologist to remove the organs from the body and examine each organ in detail. Small tissue samples will be taken from each organ to be examined under the microscope. Swabs, fluids or very small tissue samples may be taken for other tests such as virology, microbiology, biochemistry and genetics if indicated. (See What are tissue samples, blocks and slides).
In some rare cases it may also be felt that small samples should be stored frozen, for later studies using biochemical or genetic tests.
Usually genetic tests would be undertaken to make a specific diagnosis
in the deceased, but occasionally they may have implications for the whole family.
If this is the case, you will be consulted and the implications discussed with
you (See Genetic testing).
The organs are all returned to the body unless the deceased (or you) has given authorisation for their retention, and after the examination, the body is carefully restored, usually by a mortuary technician in such a way that when fully clothed you cannot see the incisions. You should be able to see the body after the examination if you wish.
2. What are tissue samples, blocks and slides?
Tissue samples are a very small part of an organ. These tissue samples are placed in formalin (called fixation) and are often placed directly into plastic cassettes. The tissue is then chemically treated to remove water, which is replaced by wax. This produces a tissue block, which is a hard block attached to the cassette and from which a very thin section can be cut by a biomedical scientist. This thin section (ten times thinner than a human hair) is mounted on a glass slide before being stained. A very large number of sections can be cut from one tissue block, and a number of different stains can be used to show different features. Tissue blocks and glass slides are stored in special cabinets and are kept securely in laboratories that keep very good records and control access to the laboratory. These techniques are the same as those used to examine tissue from living patients.
After tissue blocks have been prepared, there are sometimes slivers or small samples of tissue remaining. These will be disposed of by the hospital.
3. Uses of the medical record
What can be done with the medical record?
If authorisation for a post-mortem examination has been given, then the tissue blocks and slides become part of the medical record of the deceased. The medical record also consists of the case notes, photographs and X-rays.
It is an important part of ensuring the quality of medicine that work is routinely audited, as recommended by the General Medical Council in their booklet Good Medical Practice. This means that checks are made to ensure that the work of medical staff is as accurate as possible by comparing it against recognised standards.
In addition to audit, the photographs, and X-rays taken may have useful lessons or may relate to rare conditions that other doctors could learn about. Examining tissue is one of the most important ways in which doctors learn about illness and how to treat it. Students training to be doctors need to watch and learn about post-mortem examinations, and discuss the findings with an experienced doctor. In the same way, glass slides can be used to teach other doctors or as part of a test in a scheme such as the national Scottish pathology external quality assurance scheme which regularly tests pathologists' knowledge.
Sharing information between doctors and hospitals is also very important for public health surveillance - making sure that infectious diseases do not spread throughout the local or national population.
If the deceased's medical records were to be used in this manner, they would be used anonymously and any identifying features removed.
What about research?
Research is a valuable part of medicine and is how new understanding of disease processes can help in the search for new treatments. Research can vary from a simple study reviewing diagnoses already made to see if there is a new pattern to more complex tests involving gene probes that have only recently been discovered. All research is governed by research ethics committees which might be in the local area (research ethics committees - RECs) or that cover a number of areas (multicentre research ethics committee - MRECs). Both RECs and MRECs have members of the public on the committee.
You can ask if you might see the results of any research that the person's organs or tissue were involved in, but it may not be possible to identify an individual's contribution to a research study. The research institution will have records of its publications, and may have a website giving details of the sort of research it carries out. You should be able to obtain details of the sort of research carried out by the lead researcher and the institution.
4. Genetic testing
Genetic tests vary from the examination of chromosomes (often from a blood or skin sample) to those involving specific probes looking for a particular gene linked to a known disease. Simple tests for diagnosis will be done if necessary as part of the post-mortem examination, but a test that might have major implications for the whole family will only be done after discussion with you. Genetic testing is rarely carried out in post-mortem examination of adults.
5. Organ retention
The body contains many organs, such as the brain, heart, lungs and liver. Each organ carries out many different functions and is composed of different tissues. The brain is extremely soft and in order to examine it thoroughly it has to be hardened in fixative often for several weeks. Neuropathologists are doctors who specialise in the study of disorders of the brain and spinal cord. They may not be in the same hospital as the post-mortem is carried out and it may take some time to get the results of a neuropathological examination.
What happens after the retention and examination of an organ?
If the person left instructions authorising the retention of organs for further examination or gifted them for research, the wishes of the deceased will be followed, as will any instructions concerning disposal.
If you authorise the retention of an organ for further examination, you need to consider how it might be dealt with after the examination is complete. If the examination or a preliminary examination can be completed before the funeral, the organ can be returned to the body, and you might wish to consider delaying the funeral to allow this to happen. You should discuss with the hospital how long the funeral would need to be delayed.
If you do not feel you need to have the organs returned to the body before the funeral, you can ask the funeral director who is making the funeral arrangements to arrange for the later disposal of organs. Alternatively, the hospital can arrange this for you and you may wish to ask for more details about what the hospital's arrangements for disposal are.
You may feel that you would like more use to be made of any organ that you authorise to be retained for diagnosis. There are many research studies in different areas of medicine that could benefit from a donation, and a gift such as this would be appreciated and could help in research or education of future doctors. Please discuss this with the person who is explaining the post-mortem, and they should know who to ask about what can be done.
If you authorise the retention of an organ for education, audit or research it will usually not be returned and will be disposed of by the hospital or researcher once the purpose for which it has been retained has been completed.
6. Conditions and requests
What sort of conditions and requests can I make?
You may have specific religious requirements about the timing of the funeral or washing of the body. If you do, please tell the hospital staff and ask them to note these in section 3 of the form.
If there is specific research that you would like the person's organs and
tissue to be donated to, or if there are specific types of research that you
would object to, then the authorisation form is the place to record those wishes.
You may want the organs to be held for only a limited period of time. Again,
if so, please say so on the authorisation form.
7. Standards
How do I know that only what has been authorised will be carried out?
NHS Quality Improvement Scotland has written standards for post-mortem examinations that must be followed by NHS personnel in Scotland. These are available on their website (www.clinicalstandards.org/nhsqis/) and you can ask for a copy to read. One of the standards is that there is a check on what has been authorised and what is then carried out by the pathology department. The Royal College of Pathologists has also published guidelines about post-mortem practices, and has published patient leaflets and guidance about the retention of tissues and organs at post-mortem examinations.
8. What if the relatives disagree about a post-mortem examination?
It is always best where all those close to the deceased agree on whether or not a post-mortem examination can be done. Where the deceased left instructions authorising or objecting to post-mortem examination, use of his or her medical record and use of organs, doctors will usually act on these instructions. If the deceased nominated a person to make decisions for them and the hospital is made aware of this, then doctors will act in accordance with the views of the nominated representative.
If the deceased did not leave instructions or nominate a representative, then the person's nearest relative would be the person asked to consider authorising a post-mortem examination.
The person's nearest relative would be determined in descending order of priority according to this list:
Where there is more than one possible nearest relative, for example where there is no surviving husband or wife but there are a son and a daughter, the eldest child would be treated as the nearest relative. Illegitimate children have the same rights as legitimate ones.
Unmarried partners should have the same rights to give authorisation as husbands or wives, regardless of whether they are of the same sex as the deceased. However, in line with current law, unmarried partners must have been living with the person as if they were husband or wife for a reasonable time, not less than 6 months. Where the deceased was divorced or permanently separated from a husband or wife, the husband or wife loses the right to give or withhold authorisation of a post-mortem examination.
Where only one of the close relatives is available at the hospital, he or she will be asked if they think the other close relatives would object. The post-mortem examination can go ahead if the nominated representative or the nearest relative authorises it. However, if the other close relatives object or would be likely to object, then usually the post-mortem examination would not be done. There may be unusual circumstances in which relatives disagree strongly over whether a post-mortem examination should be done. Where disagreement cannot be resolved through discussion, the post-mortem examination would not usually go ahead.
9. Further information
What else can I read about post-mortem examination?
Standards for the management of post-mortem examinations: NHS Quality Improvement Scotland April 2003
Royal College of Pathologists: Guidelines on Autopsy Practice, September 2002
Medical Research Council (MRC). Human Tissue and Biological Samples for Use in Research: Operational and Ethical Guidelines MRC 2001.
The hospital will have a list of local and national organisations who can offer support and further information.