You have been given this booklet because someone close to you has died. On behalf of our staff, we would like to express our sympathy to you and your family at this sad time.
We understand that this is a distressing and difficult time for you to consider the question of a post mortem examination and you may have some fears and uncertainty about it. We hope this booklet will help you understand the reasons for giving consent for a post mortem examination, what it involves, and how the results could be of value and help.
Take time to read it, and discuss it with your family, if you wish, before you consider completing the detailed consent form. Please do ask us if anything is unclear, or if you have any questions.
This is the name of the person who can help you.
Name.................
Job title....................................................................
Contact telephone number......................................
Times available ........................................................
Please tell us if there is another member of staff you would prefer to speak to. Possibly someone you came to know while they were looking after your loved one or relative whilst in hospital.
It is important to remember that you can ask as many questions as you like but if you would rather not hear details that you find upsetting and distressing just say so. Hospital staff are aware that this is a very hard subject for people to deal with, at such a sad time. They will want to support you in reaching a decision that is right for you and your family.
The Human Tissue Act (2004) regulates the making of post mortem examinations and regulates the removal, storage, use and disposal of human bodies, organs and tissue for research, transplantation, education and training.
As part of the regulatory framework the HTA licences establishments and undertakes inspections to assess compliance with expected standards.
The George Eliot Hospital NHS Trust operates under the licence given by this authority and abides by the requirements and codes of practice of the Human tissue Authority (HTA).
What is a post mortem examination?
A post mortem or, as it is sometimes called, an autopsy, is an examination of a body after death. Post mortems are carried out by pathologists; they are doctors who specialise in the diagnosis of disease and the identification of the cause of death. It is the final step in the investigation of a person's illness, or their cause of death.
Why do a post mortem examination?
A post mortem examination can provide information about the illness or other cause of death. Without a post mortem, the cause of death can be wrong in up to 30% of cases, although even a post mortem examination cannot always provide a reason for the death.
Post mortem examinations help the medical profession by:
- providing information about illness and health that would not be discovered any other way. Much of what is known about illness today has come from such examinations
- 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, and identify any complications or side-effects
A post mortem examination can help people understand why a loved one has died. Sometimes families or partners ask questions that can only be answered with information obtained from a post mortem examination. It is also possible that the information gained may benefit future children in the family, or other patients who suffer similar problems and illness.
Donating organs for transplant is handled separately from the post mortem. Please ask if you want to know more about this.
Who decides whether a post mortem should take place?
By law a Coroner can order a post mortem examination to be done. There are three main reasons why a death is referred to the Coroner:
- a death has been sudden and unexpected
- a person has been ill but the doctor confirming the death is not certain why it happened at that particular time
- a death has been the result of an accident, or unusual circumstances (including deaths following a medical procedure such as surgery).
A hospital can request that a post mortem examination is carried out if:
- the highest qualifying relative gives full consent
- the deceased person gave their consent before they died
- the highest qualifying relative requests a post mortem. See below for the list of qualifying relationships for consent.
What if I don't want a post mortem to be carried out?
The majority of post mortems are ordered by the HM Coroner, who does not need your consent to carry out the examination, the decision is taken by the Coroner and not the family.
If the hospital requests a post mortem, and you do not want this examination it is your right to refuse. You are under no obligation to agree to one and no pressure should be placed on you or other (family members to give consent).
Who can give consent?
The most important wishes to consider are those of the person who has died. If it is known that the person who has died gave consent or specifically did not want to give consent to the retention of tissue samples or organs, then those wishes must be respected.
If their wishes are not known, then a person nominated by them when they were alive, or someone in a relationship with them or closely related, must give consent. The Human Tissue Act defines a list of 'qualifying' relationships, which are ranked. That means that the person nearest the top of the list should be approached and a decision of that person cannot be overturned by someone below them in the list. The spouse or partner is highest on the list, and a long term friend is at the bottom. If there is more than one person at the same level, for instance there may be two or more siblings, consent is only required from one of them.
As defined in the HM Coroners Rules, any 'properly interested person' may give a decision to the HM Coroner about how the samples must be treated when their investigation has ended. Whilst the relationships between the person who has died and the properly interested person are similar to 'qualifying relationships', they are not ranked in the same way. If a decision to retain tissue samples or organs is made by a properly interested person, a Pathologist or another healthcare professional may need to contact the family to make sure the requirements of the Human Tissue Act are met for storage and / or use of the material for medical research or other purposes.
Staff seeking your consent must ensure it is in line with the Human Tissue Act 2004.
Consent must be obtained in this order:
- The person concerned where an adult has, whilst alive, given valid consent for a post-mortem examination to take place after their death, this consent is sufficient.
- Their nominated representative - the Human Tissue Act 2004, sets out the terms for valid appointment of a nominated representative. This is outlined in the HTA's Code of Practice on Consent that the hospital must follow.
Or in the absence of either of the above
3. A person in a qualifying relationship with the deceased immediately before their death. Consent must be obtained from the person ranked highest in the hierarchy and is only needed from one person in the hierarchy:
- Spouse or partner (including civil or same sex partner)
- Parent or child (biological or adopted)
- Brother or sister
- Grandparent or grandchild
- Niece or nephew
- Stepfather or stepmother
- Half-brother or half-sister
- Finally, a friend of long standing if no other appropriately related people are available.
Is the consent form binding?
The consent form acts as a written record of your decision, making 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 change, or withdraw your consent even after signing. A member of staff will tell you what the time limit is in which to do this.
Remember that the hospital always needs your consent before a hospital consented post mortem examination can be carried out.
When will the post mortem examination be done?
Coroners post mortems take place in the hospital mortuary at the George Eliot Hospital NHS Trust and are usually carried out within two to three working days of the death. The earlier the examination is held, the more likely we are to gain useful information. If for religious reasons you must have a funeral within 24 hours, please let the hospital know and the pathologist will try to carry out the post mortem within this time limit.
The Coroners' Officer will normally be able to let you know the date, time and place of a post mortem ordered by the Coroner.
Hospital post mortems are conducted at George Eliot Hospital NHS Trust, Nuneaton, Warwickshire.
Is anyone else other than the pathologist present during the post mortem?
The pathologist is helped by other staff, usually at least one mortuary technician. Sometimes doctors, medical students, and other health care professionals may attend a post mortem for educational purposes and may include part of the team who cared for your loved one.
If the Coroner has ordered the post mortem, as the person closest to the deceased, you have the right to be represented at the examination by a medical practitioner, if you wish.
What happens in a post mortem examination?
The pathologist, working to standards set by the Royal College of Pathologists, will remove and examine all the major internal organs (or those agreed beforehand with you) and will take samples of tissue and fluid (such as blood) but only with your
consent for later inspection in detail. Bodily fluid samples removed at post mortem are usually disposed of after diagnosis.
If you have agreed to allow samples of tissue to be taken for testing, you can also agree for these to be kept as part of your loved one's medical record, in case they are needed to answer further questions about the cause of death, or to help answer questions regarding illnesses of other family members in the future. This will not affect the post mortem if you do not agree.
It may be possible to limit the post mortem examination. This means that only certain parts of the body are examined but this can still be helpful. However, as the term suggests, this may only provide a certain amount of information about the cause of death or illness. The doctor may advise you that a limited examination would not be of enough benefit. The doctor, or other health professional who discusses the post mortem with you, will be able to explain what the options are.
Although your consent is not required for the removal and testing of tissues taken during a post mortem ordered by the HM Coroner, you will be able to decide what happens to the organs and tissues when they are no longer required by the HM Coroner. The Coroner's Office will explain the options available to you.
Following the post mortem examination, the organs are returned to the body (although they cannot be returned to their original positions within the body).
What happens to tissue samples removed for more detailed examination?
Although some information can be obtained from looking directly at organs in a post mortem, often the only way to understand properly what has happened is to look at part of an organ with a microscope.
These techniques are the same as those used to examine tissue from living patients.
Small pieces of tissue are removed and placed in small, plastic, cassettes. These samples are usually less than one centimeter square, in size (smaller than a standard postage stamp) and up to five millimeters thick.
Often samples are much smaller, although samples from the brain or lungs may be larger: about two centimeters square. The tissue is chemically treated to remove water, which is replaced with wax. These tissue blocks become hard, so that very
- thin sections - ten times thinner than a human hair - can be cut from them.
They are placed on glass slides so that they can be examined with a microscope.
More than one section can be cut from one block. Most blocks and slides are kept in special cabinets designed for this purpose, which are kept in a secure place in pathology.
Sometimes organs need to be 'fixed', that means preserved with chemicals before samples can be taken. This process may take a few days to complete.
Does the hospital keep tissue samples removed during the post mortem?
Yes, if you have consented to this. Blocks and slides for examination under a microscope (as stated in the previous section) can be very useful because ways of examining tissues improve year on year, and in cases of genetic disorders, looking back to the tissue of deceased family members may help make a diagnosis in living members of the family so that they receive the correct treatment.
In addition, the use of these tissue samples for specified purposes ('scheduled purposes') require your consent. These samples can be valuable for the education and training of healthcare professionals, research, public health monitoring, clinical audit and quality assurance. For example, tissue samples may be needed to check standards in a hospital pathology service.
You will be asked to clearly indicate your wishes.
Will the tissue samples be used for general medical research?
This can only happen in hospital post mortem cases if you give your consent and these will only be stored at University Hospitals Coventry and Warwickshire. Tissue must not be used for research without your agreement.
With your consent, tissue blocks and slides can be used in research which may benefit other people in 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. This happened a few years ago with a variant CJD, following BSE. Special committees must approve any research, to make sure it is ethical, and that sufficient consent has been given.
The George Eliot Hospital NHS Trust has no purpose to retain specimens for medical and teaching purposes on site.
What happens to any tissue removed during the post mortem but not prepared for further examination?
When a tissue sample is taken it is often larger than the piece needed for making into a block. This is necessary to rim unfixed or fresh tissue to the exact size needed for processing and not damage it. Any tissue left over is disposed of immediately. After tissue slides have been prepared the unused (or residual) tissue in the block will be disposed of as hospital clinical waste.
Who decides what happens to tissue kept for further examination?
You do, as the highest ranked person in a qualifying relationship to the patient.
Are photographs taken during the post mortem?
Yes, occasionally photographs are taken but if they are, they are usually kept as part of the person’s medical records. They may be used for medical education, audit, or research, in which case any information which would allow your partner or relative to be identified will be removed. If you object to photographs or other images being used in this way, you must say so and this will be respected and will not be carried out.
Why do hospitals need people to donate tissue and organs for medical research, education, audit, or quality assurance?
Examining tissue is one of the most important ways in which doctors learn about illness and how to treat it. Tissue blocks and slides are used to train medical students and new doctors, to help experienced doctors continue to learn about new conditions or treatments, or to teach specialist knowledge.
Sharing information between doctors is important in maintaining high standards of care. Doctors training to be pathologists need to watch and learn about post mortem examinations, and discuss the findings with an experienced doctor.
Sharing information between doctors and hospitals is also very important for public health surveillance - making sure that infectious diseases (such as hepatitis, measles or tuberculosis) do not spread throughout the local or national population.
Medical education, audit and quality assurance are an important part of healthcare, so blocks and slides taken for diagnosis may be used in this way.
However, you will always be asked for your consent to retain whole organs for any of these purposes.
Research is vital for the progress of medicine. It allows us to understand, and in many cases, cure diseases that were incurable in the past. The majority of research adds just a little understanding to the building of knowledge - occasionally it is groundbreaking. But all research is important, even if it doesn't make the newspaper headlines. We ask for your help to continue improving our knowledge that will in turn help other patients in the future.
Can I choose to donate tissue or organs just to certain areas of research?
Yes. If there are some types of research you are worried about, you should discuss this with a member of hospital staff. You do not have to give overall consent and can always refuse to consent to certain types of medical research.
What happens to organs or tissue donated for medical research, education or audit?
They cannot be returned to you. After they have been used, they will normally be disposed of by incineration. ln some cases they may be used for many years before disposal.
What if I get confused about what I'm agreeing to?
There is a great deal of information involved but the hospital staff should make sure you know enough about the post mortem examination to decide if you wish to give your consent. They will discuss the alternatives with you. Although they may suggest a particular option, it is important that you come to the right decision for you and the family. They will ask you to say whether you have understood the information you have been given. If you are not sure, don't hesitate to say so.
Will I be able to ask questions?
You can ask as many questions as you like. You may also want to discuss the decision about a post mortem examination with other family members.
People vary as to how much information they want to know about what will happen during a post mortem examination. If you would rather not know about certain details of the post mortem please say so.
You may want to have more information, or would like to discuss the matter in more detail with a health professional such as a pathologist, doctor or other health professional trained in taking consent so do not hesitate to ask.
Can I see the body after the post mortem?
Yes, most certainly if that is your wish. After the post mortem the mortuary staff will prepare your loved one for you to see again. We have an appointment system here at the George Eliot Hospital NHS Trust as we only have one Chapel of Rest, however when you view your loved one you can take as long as you need. Please contact the Bereavement Centre on 024 7686 5102 during office hours Monday - Friday 8.30am - 4.30pm.
You may prefer to wait and make arrangements with the funeral director that you have chosen, to use their facilities, often this is the preferred choice.
How do I find out the results of the post mortem?
At the George Eliot Hospital NHS Trust the consultant in charge of your relative or partner's care will normally make an appointment to see you on a one to one basis. You are then able to discuss the findings of the post mortem with the doctor. This may be some weeks later, after all the tests are complete. A copy of the post mortem report will be kept in the hospital notes. A copy can also be requested by the GP.
In the case of the HM Coroners' office, a post mortem ordered by the Coroner is to identify the medical causes leading to death. You should still be able to obtain a copy of the report from the HM Coroner's office, although there could be a fee for this, unless an inquest has been ordered following the post mortem. You should be informed as soon as the HM Coroner's report is available.
What is the role of the Human Tissue Authority (HTA)?
The Human Tissue Authority (HTA) ensures that human tissue is used safely and ethically, and with proper consent. It regulates organisations that remove, store and use tissue for research, medical treatment, post-mortem examination, teaching and display in public. More information on the HTA can be found using the link below.
https://
How do I raise a concern or make a complaint?
If you have concerns and wish to make a complaint you can contact the George Eliot PALS department by email PALS
Thank you for taking time to read this booklet and we trust it has been of help. If further assistance is needed please feel you can contact the named person written in the front or a member of the medical or nursing staff.
Bereavement Centre, George Eliot Hospital NHS Trust, College Street, Nuneaton CV10 7DJ.
George Eliot Hospital is a smoke free environment. For help and advice to stop smoking you can call the national helpline on 0300 123 1044 or visit https://
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