Information Booklet for Paediatric Post Mortem Examinations

GUIDE TO THE POST MORTEM EXAMINATION (BABY/CHILD)

On behalf of our staff, we would like to express our sympathy to you and your family following your loss. This booklet may be helpful where a post mortem examination has either been requested or is required for your baby/child. We understand that it is a difficult time for you and that you may find it hard to take things in and to ask questions. This booklet contains an account of post mortem procedures and how you can obtain information about the results of the examination afterwards. However, 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 what will happen during a 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 the Coroner’s Officer and hospital staff at the end of this booklet.

Index Section

Page

What is a post mortem examination?

4

Why undertake a post mortem examination?

4

Details of the examination

6

Tissue samples

7

Whole organs or larger pieces of tissue

7

Options for retained tissues

8

Tissues not processed into blocks and slides

9

Viewing after the procedure

9

Inquests

10

Results

10

What is a post mortem examination? A post mortem examination is an examination of a person’s body after death. In the case of a baby or child the examination is carried out by a paediatric pathologist, who is a qualified doctor specialising in the diagnosis of disease and the identification of the cause of death in children. There are two types of post mortem examination:

1. Consented – This is an examination, which can be either requested by yourself or by

one of the doctors caring for your baby/child, in order to find more information about their illness when the cause of death is already known. This can only be done with your full permission and you will have choices about the extent of the examination.

2. 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 tissues taken for this examination once the Coroners purposes are complete.

These examinations are explained in more detail below. 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 the patient’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 or medication given Help to answer questions about potential health problems that may run in the family, or potential implications for future pregnancies

Coroners By law the Coroner can order a post mortem examination to be undertaken. There are 3 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 usually takes place within 2 to 3 working days of the death. However in certain circumstances it is more helpful if the examination is carried out sooner than this. 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 and everything possible will be done to arrange this for you. The post mortem procedure takes place in a special room in the mortuary, which is very similar to an operating theatre. A paediatric pathologist, a qualified doctor specialising in the diagnosis of disease and the identification of the cause of death in babies and children, carries out the procedure. A highly qualified medical technician will assist the doctor. From time to time, professionals in training with a legitimate interest, such as medical students, student nurses and police officers may view the examination as part of their training. If you have any strong objection to this, please inform either the Coroner, if the examination is being done on their behalf, or the person obtaining your consent to the examination.

How long will the procedure take? The procedure itself will normally take about two hours. Where a very complex examination is required the examination may take longer, up to four hours.

What does the examination involve? The pathologist follows strict guidelines laid down by the Royal College of Pathologists.

Examinations on behalf of HM Coroner The pathologist has a duty to 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 and size 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. 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. These samples are explained in more detail in the next section. In most cases all organs are then returned, but occasionally further information will be required that can only be obtained by retaining a whole organ for detailed examination. If this is necessary, the Coroner will inform you. You should be aware that a Coroner’s examination is limited to identifying a cause of death. There may be instances where you, or the doctors, require further information than can be obtained from the standard procedure. In these circumstances, you may request to extend the procedure or the option of an extended examination may be discussed with you.

Consented Examination The basic procedure will be as described for a Coroner’s post mortem examination above. The main difference is that 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 impose. You will be asked to complete a consent form, which gives 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 a 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, it is inevitable that very small amounts of tissue will be surplus to requirements. These would normally be disposed of according to hospital policy, unless you have an objection to this.

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 if not ordered by the Coroner, with your full permission. 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 for further diagnosis. The implications of any retention will be explained to you. A whole organ that is retained 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 its size and the organ/ tissue retained. If this does apply to you, 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 will involve slicing the tissues, making a visual examination and taking samples, which will then be processed into blocks and slides. The doctor would normally require the ’fixed’” tissues to be retained until the diagnosis is complete.

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 be kept at the hospital as part of the records of the examination, and you may also allow them to be used for ethically approved research, teaching and other clinical purposes (please see next section for more details about blocks and slides.) The retention for future diagnosis is of less value for ’fixed tissues‘ and this option would not normally be offered to you. However, you can allow the fixed tissues to be retained for the purposes of ethically approved research, teaching, public health surveillance, audit and quality control. This could be a very useful resource, and the person obtaining consent will go into more detail with you about the types of uses to which tissue can be put if you require. If you do not wish the tissues to be retained, you have several options: You may choose to delay the funeral until the tissues can be reunited with the body. 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 samples on your behalf.

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. 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 families with illness in the future. When tissue samples are used in this way, any information that can link them to your baby/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.

Are there any other types of tissue that are not processed into tissue blocks and slides? Yes, depending on the circumstances of the death, the paediatric pathologist may feel the need to take samples of blood, urine and other fluids for special tests, such as looking for infection. In most cases, they will all be used for the tests. If the tissues are not all used for the tests, they would normally be retained for approximately six months, and then disposed of according to the hospital policy. However, if you have strong feelings about these samples, then you do have the same choices available to you as for blocks and slides. We would not however, recommend having blood or urine returned for a separate burial or cremation, or reunited with your child.

When will the results be available? It is unusual for an obvious cause of death to be found on the day of the examination. However, even when this does occur, there is usually a benefit in carrying out more detailed examinations of tissues in order to find more information. The doctors will do their best to make a diagnosis as soon as possible, but it can take up to three months before a full report is available. If the examination is complex and the result is likely to be delayed, this will be discussed with you.

Will I be able to view my baby/child after the procedure? Yes, of course. The technicians who are caring for your baby/child after the procedure will prepare them for you to see. There are viewing facilities at the mortuary, so you may view them here or you may prefer to wait until they are transferred to your chosen funeral directors. Viewings are by appointment only and can be arranged either by contacting the Bereavement Care Team on (023) 8079 4587 or the ward where your baby/child died. Outside of normal hours, contact can be made with the on-call mortuary technician by phoning the hospital switchboard on (023) 8077 7222.

What happens next? Consented The funeral directors will be able to collect your baby/child after the examination is complete. They will liaise directly with the Mortuary staff to organise a suitable time.

Coroners If the Coroner has ordered an examination, the Coroner has to give permission for your baby/child to be released. Once the examination is complete, the Pathologist will inform the Coroner of his initial findings and, if appropriate, confirm that he has taken the tissue samples required to complete the examination. The Coroner will usually arrange for your baby/child to be released as quickly as possible, but there may be a slight delay if there is to be an inquest or until the Coroner is satisfied that you do not wish for any tissue samples to be reunited with the body.

Why would there be an inquest? It is the decision of the Coroner whether to hold an inquest, and the Coroner’s Officer will advise you of the reasons in your particular case. However, 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.

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 a member of the medical team who looked after your baby/child. The report will be available for this meeting, and the findings and any implications will be discussed with you.

Coroners If the Coroner has ordered the examination, the results will be given to you via the Coroner’s office. If your baby/child has died at Southampton University Hospitals NHS Trust then you can request an appointment to discuss the findings with a member of the medical team who looked after them. However you should be aware that the Coroner’s permission will be required for this, and he may not allow the meeting to take place until after the inquest is complete, if one is required.

I have further questions, who may I contact? If you have any further questions, then you can contact the ward where your baby/child was cared for, or one of the following: Bereavement Midwife at the Princess Anne Hospital Tel: (023) 8079 6022 Neonatal Family Support Sister at the Princess Anne Hospital Tel: (023) 8079 8112 Bereavement Care at Southampton General Hospital Tel: (023) 8079 4587

Local Coroner: HM Coroner’s Officer Tel: (023) 8067 4266