Introduction
On behalf of our staff, we would like to express our sympathy to you and your family following your loss. We understand that this is a difficult time for you to consider such an issue as a post-mortem examination, but we hope this booklet will help you understand the reasons for undertaking a post-mortem examination, what it involves and its potential value. Please take the time to read it and discuss it with your family if you wish before you complete the consent form and ask us if anything is unclear or if you have any questions. You may also wish to speak to the Bereavement Midwife who can be contacted on 01253 956877 or the Paediatric Bereavement Nurse on 01253 956713.
When a baby or child dies it will be a distressing and confusing time for family members. In some circumstances, a post-mortem examination may be required or requested. This is an examination of a body after death and during this examination organs and tissue samples may need to be removed for investigation. After the post mortem examination decisions will need to be made about what should happen to the removed organs and tissue samples.
This information has been provided to support those who are bereaved and are affected by a post-mortem examination. It can be read in conjunction with the Stillbirth and Neonatal Death Charity (SANDS) leaflet ‘Deciding about a post mortem examination – Information for parents’, which further explains the post mortem examination and the choices available to you.
You may wish to take this information away with you to read in your own time and to refer back to during or after your discussions. This information takes the form of questions and answers and can be used in full or in part, as required.
A post-mortem examination is the examination of a body after death and can also be called an autopsy. Post-mortem examinations are carried out for two main reasons:
• At the request of a Coroner, because the cause of a death is unknown, or when a death happens unexpectedly or suddenly.
• At the request of a hospital, to provide information about an illness or cause of death, or to advance medical research.
These medical examinations of the body can be extremely useful in determining how, why and when someone has died, or providing information about the effect of treatment given, or the events leading up to death. They can also be useful to better understand how a disease has spread, identify genetically inherited diseases or to help plan future pregnancies and how you are cared for during your pregnancy.
Post-mortem examinations are carried out by Pathologists, trained doctors who work to standards set by the Royal College of Pathologists and the Human Tissue Authority.
That in some cases you will be asked to make some decisions. These may be to discuss any need for consent, or to decide what happens to organs and tissue samples that may need to be removed for investigation. Your wishes will be respected.
That you will have the opportunity to have a discussion with a professional trained in seeking consent from either the hospital or Coroner’s service. This is so that you have all the information you need to help you reach a decision. This discussion should cover what you can expect, what will happen and what your rights are. It should also provide you with information to help you make decisions about what happens to organs and tissue samples that may need to be removed for investigation.
That any particular needs that you have, which could be cultural, religious or practical, will be taken into account as far as possible.
That where consent is not given for storage of organs or tissue samples they are disposed of in a timely and respectful manner.
That you will be given time (usually 2 days) to change your mind or make amendments to any decisions you have made regarding the post mortem examination or any tissue or organs that have been retained. You will be provided with the contact details for a named person who you can ring to discuss any changes.
A Coroner’s post-mortem examination is carried out under the authority of a Coroner to find out how your baby or child has died and whether an inquest is necessary. You will not be asked to give consent for a Coroner’s post-mortem examination. This is because the Coroner is required by law to investigate deaths which are violent, unnatural or sudden with unknown cause.
In some circumstances a Coroner may open an inquest after a post-mortem examination. If the Pathologist certifies that they have a bearing on the cause of death, the Coroner may require that any retained organs and tissue blocks and slides are kept until the Coroner’s function is complete. Similarly, if there is a possibility of criminal involvement in the death, tissue may be needed by the police as evidence, separate to the Coroner’s requirements.
In both cases, the tissue samples, blocks and slides or organs may need to be kept for several months, in some cases, years. As a result this may affect what you want to happen to them.
If there is a need for an inquest, this and the implications will be discussed with you by the Coroner’s office.
A hospital post-mortem examination is sometimes requested by a hospital, to provide information about an illness or cause of death, or to advance medical research. A hospital post-mortem examination can only take place with consent. When a baby or child has died, a person close to them can give consent. In these circumstances, the Medical Certificate of the Cause of Death will usually have been issued before the post-mortem examination, but the doctors who looked after the baby or child before they died may request the examination to obtain more information.
Hospital post-mortem examinations can be limited to certain areas of the body, such as the head, chest or abdomen, and this will be discussed with you when your consent is sought. Only those organs or tissue you agree to can be removed and will be examined.
The Human Tissue Authority recommends that you should be given 24 hours to consider your decision about the post-mortem examination, and that you will be given details of someone to contact if you change your mind.
The Human Tissue Authority has the interests of the public and those they regulate at the centre of their work. They aim to maintain confidence by ensuring that human tissue is used safely and ethically, and with proper consent. In England, Wales and Northern Ireland, all hospital and local authority mortuaries where post mortem examinations take place are licensed and inspected by the Human Tissue Authority and must show they meet their standards. Valid consent is at the centre of the Human Tissue Act – the law that established the Human Tissue Authority.
If standards are not met, the Human Tissue Authority will take action, which ranges from providing advice and guidance, restricting activity in a mortuary or, in extreme cases, asking an establishment to stop working until the standards are met. The Human Tissue Authority does not regulate Coroners and is not responsible for the professional practice of Pathologists.
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 (as for a baby or child), someone 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 post-mortem examination will be carried out as soon as possible and usually within two to three working days after the death. It may be possible to arrange it within 24 hours if necessary. The examination will be carried out in a post-mortem examination room, rather like an operating theatre, which is licensed and inspected by the Human Tissue Authority.
During a standard post-mortem examination, the body is opened and organs are removed for examination. Most of the time, a diagnosis can be made by looking at the organs, and they will then be returned to the body.
What are organs and tissues?
Organs and tissue are made up of cells. Tissue is a collection of cells with a specific role. Tissues include blood, blood vessels and muscle. Small samples or biopsies taken from organs are often classed as tissue. Organs are made up of more than one type of tissue and have a specific role in the body. They also have their own structure and blood supply. The body has many organs including the brain, heart, lungs, kidneys and liver.
Why do organs and tissues need to be retained?
In around 20% of adult post-mortem examinations and in most paediatric post-mortem examinations, the cause of death is not immediately obvious. A diagnosis can only be made by retaining small tissue samples of relevant organs for more detailed examination.
The Pathologist may need to retain a whole organ for a full assessment to allow an accurate diagnosis of the cause of death to be made. When this happens the organ or tissue is normally sent to a specialist unit.
These full assessments often take weeks or even a few months to complete, depending on the extent of the investigations required. Once they are complete, the Pathologist will produce a report for the Coroner or the medical staff responsible for the care of the person before they died.
Tissue samples: Small tissue samples which are needed for further examination are usually set into blocks made from paraffin wax. The wax blocks are sliced into very thin layers, which are about ten times thinner than a hair. These slices are placed onto glass slides and stained with a special dye to allow cells to be studied under a microscope.
Organs: If whole organs, part of an organ, or tissue are needed for more detailed examination, they will normally be treated with a chemical that preserves them. Samples of the organ or tissue may then be processed into blocks and slides as described above.
When the post-mortem examination is complete, you will be told whether tissue samples and organs have been retained.
If tissue samples and organs have been retained then you should expect to be given a choice about what happens to them when they are no longer needed by the Coroner or the hospital. Your consent will be needed for any tissue samples or organs to be kept for future use such as research or education and training of medical staff.
If a decision regarding consent has not been made following conclusion of the post-mortem examination, then the samples with be disposed of through sensitive incineration.
Leaflet Number 227332-BLA-PL/845.
Review Date 01/10/2027.
Author Carla McCaffrey.
