Information about an adult post mortem

Introduction

The death of a relative or friend can be a very difficult time and we wish to offer you our condolences. We recognise there are many things to arrange and consider, and we can provide support and help should you require it.

This leaflet will help you to decide whether to agree to a hospital post mortem examination. A post mortem is the examination of a body after death. It is also known as an autopsy. A hospital post mortem can only be carried out with your consent.

It can be hard to think about a post mortem so soon after death and you may have to make your decision quite quickly. It is important that you have all the information and support you need to reach the decision which is right for you.

In this leaflet we have set out some of the answers to questions you may have. You may not be able to read it all now. Please take it with you and come back to us if you wish to talk about anything we have raised.

What is a post mortem examination?

A post mortem is a careful internal examination of the person who has just died.

This examination can give valuable information about an illness and its effects on the body. It may tell us more precisely why the person died but this is not guaranteed.

Post mortems are carried out by pathologists. Pathologists are doctors who specialise in the diagnosis of disease and the identification of the cause of death.

A post mortem may be carried out for two reasons:

• a death may be referred to a Coroner because the cause of death is unknown. A Coroner is a judicial officer responsible for investigating deaths.
• the family may wish a hospital to investigate an illness, cause of death or to further medical research.

This leaflet concerns only adult post mortems.

Post mortems are carried out in special facilities provided in the hospital mortuary.

The body will be moved respectfully from the place of death to where the examination is to be carried out.

Why do we carry out a post mortem examination?

Post mortem examinations help us to provide information about illness and health that would not be discovered any other way. Without a post mortem, it is estimated that the cause of death can be missed in up to 30% of cases.

Post mortems help to:

• identify the cause of death
• confirm the nature of the illness and/or the extent of the disease
• identify other conditions that may not have been diagnosed
• assess the effects of treatments and drugs
• identify any complications or side-effects.

A post mortem examination can help people understand why a loved one died. This understanding can sometimes help people come to terms with their loss. Sometimes families or partners ask questions that can only be answered with

information from a post mortem examination. It is also possible that the information gained may benefit future members of the family, or other patients who suffer similar problems.

What is the difference between a full and limited post mortem?

If you decide that you do not want a full post mortem, you can consider more limited tests which can still provide valuable information. If you consent to a post mortem which is more restricted, for example, to just the chest and neck, it is important to recognise that this may limit the information obtained about the cause of death and effects of treatment.

Sometimes, a pathologist may discover a link during the post mortem examination which explains the disease in another part of the body. Limiting the extent of the post mortem will mean the pathologist will be unable to go beyond the area(s) of the body which have been specified on the consent form.

It is also possible to only undertake an external examination of the deceased, however, this is of limited value. It involves an external physical examination and using imaging techniques and / or photography by a pathologist.

Donating organs for transplantation is handled separately from the post mortem procedure. Please ask if you want to know more.

What happens in the post mortem?

The pathologist begins the post mortem with a careful external examination. The body will then be opened and examined internally in detail.

The organs are carefully removed from the body one by one, weighed and an incision made in order to examine them inside as well as out. This allows the pathologist to look for anything unusual or to look further into the cause of death. Images and photographs may also be taken (see later section).

Often the only way to really understand the cause of death is to examine part of an organ under a microscope. You will be asked to consent to the removal of these small pieces of tissue for further study. In some cases, a whole organ may be required to be kept for a more detailed examination but this can only be done with your permission.

Some people choose to donate tissue samples or organs from the deceased’s body for use in teaching or research. Unless you have given permission for organs to

be kept after the post mortem examination, the organs are returned to the body although they cannot be relocated to their original positions. The body is then carefully reconstructed by Anatomical Pathology Technologists.

When will the post mortem be undertaken?

Post mortems are usually carried out within 72 hours of death because the earlier the examination takes place, the more likely it is to yield useful information. If, because of your religion, you must have a funeral within 24 hours, please let the hospital know and the pathologist will try to do the post mortem within this time limit.

If I agree, what happens next?

You should have the opportunity and the time to discuss your decision with relatives, your doctor, nurse, or heath visitor. You will be asked to sign the consent form which records what you have agreed to. Please ask if you would like a copy. You also have the opportunity to withdraw your consent if you change your mind within a short time limit as agreed with the hospital.

Who can consent to a post mortem?

The Human Tissue Act 2004, the law that governs post mortems, sets out clear guidelines on who may consent to a post mortem and their order of importance in terms of giving consent. Staff must ensure consent is sought in the following order.

1. It is possible for the hospital to obtain consent from the patient before they die.

If the patient has given their consent to a post mortem being carried out, that decision cannot be overruled by other members of their family.

2. The patient may nominate a representative to act on their
behalf after their death

(their ‘nominated representative’).

3. If no direct consent has been obtained and there is no
nominated representative, consent will then be sought from
the highest ranked existing person on the list below (known
as a ‘person in a qualifying relationship’):

• spouse or partner (this includes same-sex partnerships)
• parent or child
• brother or sister
• grandparent or grandchild
• child of a brother or sister
• stepfather or stepmother
• half brother or half sister
• longstanding friend.

Do I find out the results of the post mortem?

We always send a copy of the post mortem report to the deceased’s General Practitioner and the hospital Consultant. This will usually take about six weeks. If you would like to know more about our findings you will be able to discuss these with you deceased’s GP.

Information about the consent form

The consent form is used to record your agreement to the post mortem and to state exactly what you agree and don’t agree to. The person discussing the process with you will explain what the choices are and what they mean. Please do not hesitate

to ask if you have any questions.

A Patient Details

By law we must record the name and details of the deceased, including their NHS number.

B Provision of Information

This section is a check to ensure you have received all the information you need to help you make a decision.

C Post mortem examination: full or limited

Agreement to a full post mortem examination

The pathologist, working to standards set by the Royal College of Pathologists,

will remove and examine all the major internal organs, and with your consent, will take samples of tissue and fluid (such as blood) for later examination in detail. The organs are then returned to the body (although they cannot be returned to their original position).

A full examination would not in any way prevent you from viewing the body in

the Chapel of Rest after the post mortem has taken place. Not all assessments can be made only with the naked eye and so it may be necessary to retain samples of tissue for later study under the microscope, or for other investigations. These are small pieces of tissue (usually less than 2.5cm across), which are placed into wax blocks, from which microscope slides are made. With your consent, these would normally be retained as part of the pathology record.

Limiting the post mortem examination

This could involve removal and examination only of those organs directly involved in the deceased’s illness. This may, however, mean that no information will be available about possible abnormalities present in other organs, but which may have contributed to the death. If you wish to limit the examination in any way, for example to only part of the body, please explain the restrictions to the person asking for consent so they can be recorded on the consent form.

D Retention of tissue samples

With your consent, the hospital will keep tissue samples removed during the post mortem as part of the deceased’s medical record. The tissue is made into blocks and slides for examination under a microscope. Blocks and slides can be stored indefinitely and so can be very useful because ways of examining tissues improve year on year. Keeping blocks and slides enables them to be reviewed in the future either in the

light of further medical information or on behalf of the family.

Tissue blocks and slides may also be used in training doctors and other health professionals and for quality assurance and audit purposes. Training doctors may be on a one-to-one basis or at meetings where the treatment of the deceased may be discussed. Tissue samples may be needed to check on standards in a hospital pathology service. These uses require your consent.

With your consent, tissue blocks and slides can be used in research which may benefit other people in the future. When a new disease or health problem emerges, examination of tissue on a wide scale may provide clues about how and why the disease emerged – and how to respond. Independent regional committees, working to national guidelines, must approve any research to make sure it is ethical, and that sufficient consent has been given. Tissue must not be used for research without your agreement.

You may choose that tissue samples are not retained for any reason meaning that further investigations will not be possible in the future. It is not possible to guarantee how long it will be before tissue samples can be disposed of or returned but it may be several weeks. As the slides are made of glass it may not be possible for crematoriums to cremate them. If you do not agree to the tissue samples being retained, please let us know (by indicating on the consent form) whether you would like us to dispose of them lawfully by hospital incineration or have them returned to the funeral director.

E Retention and disposal of organs for diagnosis

Sometimes organs need to be preserved with chemicals before samples can be taken.

With your permission an organ or part of an organ might also be retained for use

in research or medical education. If the organ shows a particularly clear example of

a specific illness, it may play an important role in the education of medical students, doctors and nurses.

If specific organs or parts of organs are retained for a long period, it will not be possible for the tissue or organs to be buried or cremated with the deceased.

Once the examination has been completed, you decide what happens to any retained organs or tissue:

• you can donate the retained organs for research into related disease and medical education, after which they will be disposed of lawfully by hospital incineration.
• you can ask the hospital to dispose of the organs lawfully by hospital incineration.
• you can delay the funeral so that organs and tissue may be returned to the body for burial or cremation. However, this can take several weeks or longer
• you can ask for any organs and tissue that have been retained to be returned to the funeral director. You will then need to arrange a separate cremation or burial for these.

F Medical teaching and training

Training pathologists, technologists, medical students, healthcare and other professionals for the future is essential to the National Health Service and helps us to improve the quality of the service we provide. This post mortem may provide an important opportunity for training our staff in specialist techniques, some of which may involve invasive surgical procedures, and which would be in addition to the techniques required to determine the diagnosis and extent of the disease. These extra procedures would not change the appearance of the body and will only be carried out with your consent.

G Use of images

The pathologist may take X-rays or other images (including photographs and

CT scans) of part of the body or of an organ during the post mortem examination, to be studied again later. These images are usually kept indefinitely as part of the person’s medical records. They may also be used, unidentified, for medical teaching and training according to guidance from the General Medical Council. We therefore do not need your consent in order to use these images for medical teaching and training but will ensure they cannot be identified.

H Other requirements

If you have any particular requests or concerns, please write them on the consent form. Hospital staff will also record any special instructions on the consent form.

Sometimes there is a requirement arising from the post mortem examination for genetic testing of tissue samples. In the case of unexpected deaths in adults, this is to help us investigate conditions such as inherited cardiac conditions, since these would not have been diagnosed in life.

I & J Your right to change your mind and signing the form

You will be asked to sign the form as a person in a qualifying relationship (as set

out in ‘Who can consent to a post mortem?’). If you change your mind before the post mortem has taken place you can modify or withdraw your consent even after signing. We will tell you how much time you have in which to do this.

Withdrawing consent

If you have given consent for the hospital to retain tissues and/or organs for research or educational use following a post-mortem examination, and you later decide to withdraw that consent, you have the right to do so and to request to have any stored samples or organs either destroyed or repatriated.

Contact the Patient Advice and Liaison Service (PALS):
If you wish to withdraw your consent, please get in touch with our Patient Advice and Liaison Service (PALS) as soon as possible. PALS will guide you through the process and ensure that your wishes are respected.

PALS Contact Information:

o Phone: 01223 216756

o Email: cuh.pals@nhs.net

o Office hours: between 09:00 and 16:00 on weekdays

Bereavement Care at Cambridge University Hospitals

We will help support you and sort out many practical issues after bereavement. Contact 01223 217537

Bereavement Care Services

Box 136, Addenbrooke’s Hospital, Hills Road, Cambridge, CB2 0QQ

At the time of bereavement we can also offer you support through the following:

Ward Staff

Staff on the ward are available before, during and after a bereavement in hospital

to help and support patients, carers and families and to call upon other bereavement support agencies within the Trust.

Chaplaincy Team

We are available for staff, patients and families at any time before, during or after bereavement. Contact 01223 217769

Visiting the Woodland Suite (Chapel of Rest)

The Woodland Suite is open from 10am until 4pm Monday to Friday and from 10am until 5pm on Saturdays, Sundays and Bank Holidays.

Appointments must be made for all Woodland Suite visits. Appointments can be made on 01223 217106 or via the hospital contact centre outside of working hours.

Bereavement Care from outside agencies

There are links to other groups and agencies that provide support as you travel through the grieving process from the CUH website (opens in a new tab)

This information is also available from our Patient Liaison and Advisory Service (PALS)

on 01223 216756 or from the Chaplaincy.