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AUTHORISATION FOR THE HOSPITAL POST-MORTEM EXAMINATION OF A CHILD
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 3 must be scored through.
2. One copy of the completed form should be given to the parent(s)/guardian(s), 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 parent(s)/guardian(s), 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 If any part of the authorisation is withdrawn within the time limit agreed, all copies of the form should be amended with the date the authorisations are withdrawn and a clear statement who is amending the record and on what evidence, e.g. letter, telephone conversation, etc.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.
THE POST-MORTEM EXAMINATION OF A BABY OR CHILD - BASIC INFORMATION LEAFLET
Summary
The post-mortem examination is an important medical examination to try to find the cause of your baby/child's death.
Ideally the post-mortem examination should take place within a day or two of death.
Your child's face, hands and feet are not normally affected by the post-mortem examination.
You should be able to see and hold your child again after the post-mortem examination.
You, hospital staff or funeral directors can take pictures of your baby before the post-mortem examination if you wish.
The final results of the examination will usually be available in 21 days and a copy is sent to your general practitioner. You can request a copy of the report.
Whole organs will only be kept if we have your authorisation.
If you do not wish a full post-mortem examination, talk to your doctor about other tests that may be done.
Ask as many questions as you wish.
Information about a baby or child's post-mortem examination
We are sorry your child has died and offer you our sympathy. As long as your child remains in our care, he/she will be treated with dignity and respect.
We understand that this is a very difficult time for you and it may be hard to consider a post-mortem examination. This leaflet has been written (with the help of other bereaved parents) to give you clear information about the reasons for doing a post-mortem examination and what you would need to decide.
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.
If you would prefer not be given any further information about the post-mortem examination, please say so. 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 booklet 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 help families understand why their child died. 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. However, even a post-mortem examination can not always provide a reason for the death, although it may help to answer questions that you or the doctors caring for your child may have. The main reasons for a post-mortem examination are to:
The following notes refer to sections in the authorisation form for post-mortem examination.
Section 1: Authorisation of a post-mortem examination
What is a post-mortem examination?
A post-mortem is an examination of a body after death. It is also called an autopsy. Post-mortem examinations are carried out by pathologists - doctors who specialise in the diagnosis of disease and the identification of the cause of disease. Paediatric or perinatal pathologists have further training in disorders that affect babies and children.
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 child 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 note to section 1 explains what this means. Your child's face, hands and feet will not normally be affected by the examination and you should be able to see and hold your child afterwards if you wish.
Are there different options available? (Section 1b and 1c)
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 examination with you will be able to explain what the options are. Usually, it means that only certain parts of your child's 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.
The external examination: an even more limited post-mortem examination is an external examination of a stillborn child or fetus, where only images and possibly small skin samples are taken with your authorisation. This is intended only as a check of your baby to look for an abnormality.
However, limited or external examinations provide only limited information about your child's cause of death or illness, whereas 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.
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 your religion you must have a funeral within 24 hours, please let us know and we will try to undertake the post-mortem within this time.
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 your child's medical record. 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 child may have had. They could also be used for medical education, audit and research. 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.
Medical research 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 new variant CJD after the BSE scare in cattle.
If any photographs could identify your child, you would be asked specifically for your permission before they could be used. If extra tissue or images are requested specifically for education, audit or research you would be asked to give separate permission for this.
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.
Section 2: Retention and examination of whole 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 a congenital abnormality. Organs will not be retained without your authorisation.
If this is discussed with you, there are a number of other options to consider, such as what happens to the organs afterwards. These are set out in section 2.
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, there may be religious requirements that you need to have followed, or you may wish to allow some organs to be used for research but not others.
What happens after the examination has been completed?
Care is taken during and after the examination so that your child can be dressed in his/her own clothes, and you may see your child after the examination. Your child's 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?
Yes. The pathologist will write a preliminary report within 2 days but some tests will take a few weeks, and a final report should be sent to the doctor caring for your child, normally within 21 days. A copy will also be sent to your general practitioner (GP). You will be offered an appointment to discuss the results either at the hospital or with your own GP. You can have a copy of the report if you wish to have one.
Why do I have to sign the authorisation form?
Unless it has been instructed by the Procurator Fiscal, the doctors need
your authorisation before they can carry out the 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. If you authorise the use of the medical record or organs, you
can change your mind 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.
How long do I have to decide?
You should take as much time as you need to make a decision, although in practice there is a time limit because of changes that take place after death naturally. There are also some tests that are better done sooner rather than later. The hospital staff should make sure you have enough information to decide if 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 whether you have understood the information you have been given and feel able to make a decision. If you are not sure, say so.
We hope this information is helpful but please ask if there is more information you need.
THE POST-MORTEM EXAMINATION OF A BABY OR CHILD - 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 (see index).
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), microbiology (the study of bacteria) and genetic investigations (which can vary from chromosome examination to identification of a specific gene).
Your child will have a careful external examination with documentation
of weight and various measurements to see how he/she has grown. 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 and made into blocks and slides for other
tests such as virology, microbiology, biochemistry and genetics if indicated.
(See 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 your child, 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 tests).
The organs are all put back in the body unless you have 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 and hold your child after the examination if you wish.
2. What are tissue samples, blocks and slides?
Tissue samples are usually just a small part of an organ. Where a baby is very small, (for example a fetus before 24 weeks' gestation) and the organs are tiny, the pathologist may need to take a larger piece of an organ but will be careful not to take the whole organ. These tissue samples are placed in formalin (a process 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 where access to the laboratory is controlled. These techniques are the same as those used to examine tissue from living patients.
After tissue blocks have been prepared, there may be 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 you have given your authorisation for a post-mortem examination, then the tissue blocks and slides become part of the medical record of your child. 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 of your child may have useful lessons or rare conditions that could educate other doctors. 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 paediatric pathology external quality assurance scheme which regularly tests paediatric and perinatal pathologists' knowledge.
The blocks and slides which form part of the medical record can also be used for medical research. Medical research 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.
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 your child'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 committees - 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 your child'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.
What about genetic testing?
Genetic investigations can be important if a baby dies during pregnancy or in the first few weeks of life, to try and find out if the cause is hereditary and if there is a chance of this happening again during a subsequent pregnancy. 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.
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 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 note it on the form. You may wish a special item of clothing or a special soft toy to be with your child during and after the examination, or photographs to be taken while your child is wearing his/her own clothes.
If there is specific research that you would like your child'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 only for a limited period of time. Again, if so, please say so on the authorisation form.
7. Standards
How do I know that only what I have 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 (http://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 parents disagree about a post-mortem examination?
Where both parents are available, it is always best that they agree on whether or not a post-mortem examination can be done. Where only one parent is available at the hospital, he or she will be asked if they think the other parent would object. The post-mortem examination can go ahead if only one parent authorises it. However, if the other parent objects or would be likely to object, then usually the post-mortem examination would not be done. There may be unusual circumstances in which parents disagree strongly over whether a post-mortem examination should be done. Where this 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?
Pregnancy loss and the death of a baby: Guidelines for professionals, SANDS 1995
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.