On behalf of our staff, we would like to express our sympathy to you and your family following the loss of your child. You have been asked to read this booklet because a post mortem examination has either been requested or is required on behalf of the Coroner.
We understand that it is a difficult time for you and you may find it hard to take things in and to ask questions. This booklet contains a detailed account of post mortem procedures and how you can obtain information about the results of the examination afterwards. The details of a post mortem examination should also be explained to you verbally.
There is an index, which is intended to help you find the sections that you wish to read. We hope that it will help you to understand the reasons for the examination and what it involves.
People vary as to how much information they want about the post mortem examination. However, there are certain things that will have to be discussed with you. The main things to remember are that you can ask as many questions as you wish, and that you can take a break or stop at any time if you feel that you need to.
If you have any further questions, please do not hesitate to speak to a member of staff. There is a list of contact numbers for hospital staff and local Coroners at the end of this booklet.
What is a post mortem examination?
A post mortem examination is an examination of a person’s body after death. An examination for a baby or child would be carried out by a consultant paediatric pathologist, who is a highly qualified doctor specialising in the diagnosis of disease and the identification of the cause of death in children under the age of 18. There are two types of post mortem examination:
Consented
This is an examination, which can be either requested by yourself or this may be suggested by the consultant caring for you/your child, in order to find more information about the child’s illness. This can only be done with your full permission and you will have choices about the extent of the examination.
Coroners
This is an examination ordered by HM Coroner, in certain circumstances, and as such becomes a legal requirement, so your consent is not required. You will have choices about what can happen to any tissue taken for this examination once the coroners purposes are complete.
These examinations are explained in more detail on page 5 and 6. The basic principles of the examinations are the same, but there are differences in the requirements and how the findings will be communicated with you. For ease of reference, where there are differences, some sections of the book have been divided into two parts, coroners and consented.
Why are post mortem examinations carried out?
Consented
A post mortem examination can provide information about the illness or cause of death. In some cases, it may add to what the doctors already knew about your child’s illness.
An examination after death can do the following:
• Help to confirm the cause of death.
• Show other diseases or conditions that may have been present but may not have been obvious at the time.
• Assess the effectiveness of treatment and medication given, such as radiotherapy and chemotherapy for cancer.
• In some cases it may help with the planning of future pregnancies.
• Help to answer questions about potential health problems that may run in the family.
• Help to answer questions that you as parents may have in the future.
Coroners
By law the Coroner can order a post mortem examination to be undertaken. There are three main reasons why the Coroner may do this. They are:
• A death is sudden and unexpected.
• The doctor caring for the baby/child is unable to provide a cause of death.
• A death has been the result of an accident or unusual circumstance (including deaths following a medical procedure such as surgery).
In these circumstances, the examination becomes a legal requirement: you do not have a choice, although you may inform the relevant Coroner of any special requests that you may have. However, you should be aware that these requests may not be granted.
When and where does a post mortem examination take place?
The examination may take place at Nottingham University Hospitals NHS Trust or another designated hospital where specialists in paediatric pathology are available. You will be advised when and where the examination is to take place. If you have any special requests, such as viewing your baby/child prior to the examination, please inform the Coroner, or the person who took consent for the procedure. Everything possible will be done to arrange this for you.
The procedure takes place in a facility which is licensed and in a special room in the mortuary, which is similar to an operating theatre, and close to the chapels of rest. A consultant doctor, who specialises in paediatric pathology, carries out the procedure. A highly qualified medical technician will assist the doctor. From time to time, other health professionals in training who have a legitimate interest, may view the examination.
How long will the procedure take?
The procedure itself will normally take about two hours, however, when a very complex examination is required, such as for a child who has had multiple heart surgeries, the examination may take longer.
What does the examination involve?
The pathologist follows strict guidelines laid down by the Royal College of Pathologists and the Royal College of Paediatrics and Child Health.
Post Mortem Examination Procedures
In most cases, it is standard procedure to carry out a full body x-ray and a full external examination.
During the post mortem examination, the pathologist will examine anything that may have a bearing on the cause of death. In many cases this means that in order to try to find out why death occurred, the main organs, including the brain, will be removed and examined to look for anything abnormal.
Very often, the changes are very subtle and not visible to the naked eye. Small samples of tissue will be taken for further examination in order to make a diagnosis. These samples are processed into paraffin wax blocks, called tissue blocks, which are placed into plastic cassettes. The plastic cassettes are the shape of a postage stamp, but slightly deeper. These blocks can contain more than one sample or samples from more than one area of the body.
The doctor may also take samples that will be stored in a frozen state. These samples will be used to look at genetic illnesses if appropriate and would normally include a piece of skin that is taken from the site of the examination.
The number of tissue blocks will vary according to each case, but in cases where there is no previous indication as to how the death occurred, sampling may be quite extensive, with thirty to forty tissue blocks taken.
Although this sounds quite a lot, it is usually less than 5% of a small baby’s bodyweight, and much less for an older baby or child. These samples are explained in more detail in the next section.
In most cases all organs are then returned, but in some cases further information will be required that can only be obtained by retaining a whole organ for detailed examination.
You will have choices about what can happen to the organ once the examination is complete, but in most cases the remains of the organ are returned to the body before release to the Funeral Directors. Further details are included on page 14 and this information would be discussed in detail with you if appropriate.
Photographs and case studies
Often it is necessary for the doctor to take photographs during the post mortem procedure, to document the findings. The doctor who conducts the examination normally keeps the photographs for the purposes of case review. Hospital Trusts are large teaching hospitals, so there may be occasions when photographs taken during a post mortem examination can be very useful for teaching purposes. The photographs may be internal or external, but any that are used for teaching would be those that can remain anonymous i.e. that do not show the face or any recognisable part of the body.
More rarely, the findings of the examination will be so interesting or of use to the medical community that the doctors will want to write a case study for publication in an academic journal. This is a very important method for doctors to share information with others in their field. If either the doctor caring for your child or the pathologist want to write a case study, all identifying details will be removed.
Consented Examination
When providing consent for a hospital Post Mortem, you have control over the extent and limitations of the procedure, such as which parts of the body can be examined. When you are asked for your consent, the person obtaining consent will explain the procedure to you, the necessity to retain tissue samples and/or whole organs, any requirements for genetic tests, photographs or x-rays and the implications of any limitations that you require. You will be asked to complete a consent form, which provides detailed choices regarding the examination.
What happens to the tissue samples in the laboratory?
The tissue samples will be placed into plastic cassettes and processed into paraffin wax blocks in the laboratory. The blocks are normally about 20mm (less than one inch) square and about 5mm (under one quarter of an inch) thick. The tissue is chemically treated to remove water, which is replaced with wax. The tissue ‘blocks’ become hard, so that thin sections can be cut with a sharp knife. These sections are very thin – ten times thinner than hair.
They are placed on glass slides and stained with special dyes to allow examination under a microscope. More than one slide may be cut from a block. This is exactly the same as occurs to samples taken during an operation.
During the process of making the blocks, very small amounts of tissue will be surplus to requirements. These would normally be disposed of according to hospital policy.
Why is it useful for tissue blocks and slides to be kept?
Medical opinion recommends that the retained tissue blocks and slides are preserved at the hospital where the post mortem examination was performed as part of the medical record. This will allow them to be looked at again in the future should any questions about the cause of death be raised. They can also be checked if any other member of your family has a similar medical problem.
Whatever your wishes for the tissue blocks and slides you need to sign a consent form. This consent form also gives you the options to agree to retained tissues being used for training doctors, other teaching, ethically approved medical research, audit, public health surveillance and to assist in the diagnosis of other patients. Many people agree to this in the knowledge that this may help other people with illness in the future. When tissue samples are used in this way, any information that can link them to your child is removed.
How are blocks and slides kept?
Tissue blocks and slides are given a unique identifying number. Most are kept in drawers in special cabinets designed specifically for this purpose, which are kept in the department of histopathology at the hospital.
If whole organs or larger pieces of tissue are retained, what happens to them?
Whole organs or larger pieces of tissue will only be kept with your full knowledge and consent, unless removed at the request of the Coroner. The organ most often retained for detailed examination is the brain. This is because the brain is a very complex organ and it is possible to miss a diagnosis by only taking tissue samples. More rarely, the heart may be retained and sent to a specialist centre for further diagnosis. The implications of any retention will be explained to you.
A whole organ that is retained has to be made safe for those people who are caring for it, and has to be treated so that it is easier to examine. This means that the organ/tissues will be placed into a chemical called formalin, for a variable period of time, depending on the size and age of the child and the organ/ tissue retained. The individual timescales will be discussed with you.
Once the organ, is ready for examination, or ’fixed’ then a detailed examination will be carried out. This procedure involves making a visual examination and taking samples, which will then be processed into blocks and slides.
What happens when tissue samples, taken from my baby, are used for genetic testing?
• When a baby dies, it is sometimes recommended that genetic testing is carried out, to establish if a genetic issue has caused or contributed to this.
• So that the best quality results can be obtained, if is recommended that a small sample of the baby’s skin and a sample from the placenta are taken for testing by the cytogenetics department.
• The Cytogenetics department will send any remaining pregnancy tissue, including placental samples, to the Paediatric Pathology for sensitive disposal.
• If genetic testing is recommended in earlier gestation pregnancy losses, the whole of the pregnancy remains are sent to cytogenetics so that they can obtain the best quality tissues to carry out the required tests.
• After the tests have been carried out the pregnancy remains will be sent to the Cellular pathology department for further tests to be completed. The pregnancy remains will then be prepared for the patients chosen funeral.
• Some tests require the growth of individual cells that divide in culture, these type of cells are disposed of by the Cytogenetics department after the tests have been completed.
• Where there are no specific request for testing, the tissue samples received by Cytogenetics are frozen and kept for 12 months. If after this time no request for testing has been made, the tissue will be sent to Paediatric Pathology for sensitive disposal.
What are the options for retained tissues?
Once the examination is complete, you will have choices about what happens to the fixed tissues, and the blocks and slides. It is strongly recommended that any blocks and slides made are kept at the hospital as part of the records, and you may also allow them to be used for ethically approved research, teaching and other clinical purposes.
When whole organs and larger tissues have been retained, you can allow the fixed tissues to be donated for the purposes of ethically approved research, teaching, public health surveillance, audit and quality control and this could be a very useful resource, however, if you would prefer the tissues to be retained, you have several options:
• You may choose to delay the funeral until the tissues can be reunited with your child (this occurs in the majority of cases).
• You may choose to have the tissues returned to your funeral director for separate burial or cremation once the examination is complete. You should be aware that there will be no ash from a cremation, and some crematoria may have restrictions on cremating blocks and slides. There may also be a cost implication if you choose this option, and you are advised to discuss it with your chosen funeral director as soon as possible.
• The hospital can dispose of the tissue on your behalf.
Are there any other types of tissue that are not processed into tissue blocks and slides?
Yes, depending on the circumstances of death, the pathologist may feel the need to take samples of blood, urine and other fluids for special tests, such as looking for infection. Sometimes, a sample of liver is also taken to look for medication levels, such as for a child that has been treated for epilepsy. In most cases, all of the tissue will be used for the test. If any tissue remains once the tests are complete they would normally be disposed of according to the hospital policy once a diagnosis is reached.
What do I need to do now?
If the post mortem examination is ordered by the Coroner it is very important that you complete a consent form relating to the tissue samples. This is because the Coroner needs to be aware of your wishes regarding the tissue samples before the funeral can take place, and may not release the body until the consent form is received. This form is provided by the Coroner’s office.
What happens if I do not complete the consent form?
If you do not complete and return the consent form, by law the tissue samples must be disposed of once the Coroners purposes are complete. This would be within three months of the issue of a cause of death or completion of the inquest.
When will the results be available?
Unfortunately, there are a limited number of specialist pathologists nationally and due to the some of the tests required, the report may not be available for a number of months (3-6).
In complex cases where certain tests are necessary, other specialist centres may be involved in providing information to assist the overall results and diagnosis. In these cases the report may not be available for at least 6 months.
Will I be able to see my child after the procedure?
Yes, the technicians who are caring for your child after the procedure will prepare them for you to see and there is normally no reason why you cannot hold them if you wish. Nothing will be done that will affect your child’s face and if dressed, wearing a hat or has a lot of hair, then it is unlikely that you will be able to see that an examination has taken place. However, if you wish to undress, or pick up your child, then you may see evidence of the procedure.
There are facilities at the hospitals, for you to view your child there or you may prefer to wait until they are transferred to your chosen funeral directors. The visiting suites are open from Monday to Friday during normal office hours by appointment. There is also an out of hours service, for emergencies. The relevant telephone numbers are given at the end of this booklet.
What happens next?
Consented
The funeral directors will be able to collect your child after the examination is complete, on the same day if required. They will usually liaise directly with the mortuary staff to arrange a suitable time.
Coroners
The Coroner has to give permission for the child to be released. Once the examination is complete, the doctor will inform the Coroner of their initial findings and, if appropriate, confirm the tissue samples taken to complete the examination. The Coroner will usually arrange for the child to be released as quickly as possible, but there may be some delay if there is to be an inquest or until the consent for the tissue samples has been received.
Why would there be an inquest?
It is the decision of the Coroner whether to hold an inquest, and the Coroner’s office will advise you of the reasons. An inquest is normally required if the death is due to an unnatural cause, such as an accident, or an inquest may be opened if the cause of death is not immediately identified from the post mortem examination. The relevant Coroner’s office will discuss this with you. A list of local Coroners and their contact details can be found at the end of this booklet.
How will I get the results of the examination?
Consented
If you have consented to an examination, then you will be offered an appointment with the consultant who was in charge of your child’s care, however the report may take a number of months to complete depending on the nature of the case. The report will be available for the meeting, and the findings and any implications will be discussed with you.
Coroners
If the Coroner has ordered the examination, the results and final report can take a number of months to complete and you will normally be offered an appointment to discuss the findings with a consultant who has been involved with your child’s care. You should be aware that the Coroner’s permission will be required for this, and they may not allow the meeting to take place until after the inquest is complete, if it is required.
I have further questions, who may I contact?
Mortuary / Visiting Suite
QMC campus 0115 919 4442 (8.30am to 4.30pm)
Mortuary / Visiting Suite
City campus 0115 969 1169 extension 76662 between 10.00am and 3.00pm. In an emergency (out of office hours) call 0115 924 9924 and ask for the on call mortuary technician.
NUH Bereavement Centre - 0115 970 9113
NUH Chaplains can be reached out of hours by ringing the hospital switchboard and asking for the on call hospital chaplain.
Post Mortem Information Line 0115 970 9726
Local Coroners
HM Coroner for Nottinghamshire
The Council House, Old Market Square
Nottingham, NG1 2DT
Tel: 0115 9841 5553
HM Coroner for West Lincolnshire
4 Linden Road
Lincoln, LN2 1NN
Tel: 01588 552500
HM Coroner for Leicester and South Leicestershire
The Coroners Office
Town Hall, Leicester LE1 9BG
Tel: 0116 454 1030
HM Coroner for Rutland and North Leicestershire
34 Woodgate, Loughborough
Leicestershire, LE11 2TY
Tel: 0116 305 7732
Feedback
We appreciate and encourage feedback. If you need advice or are concerned about any aspect of care or treatment please speak to a member of staff or contact the Patient Advice and Liaison Service (PALS):
Freephone (City Hospital Campus): 0800 052 1195
Freephone (QMC Campus): 0800 183 0204
From a mobile or abroad: 0115 924 9924 ext 65412 or 62301
