Postmortem

POST MORTEM EXAMINATIONS
GOOD PRACTICE IN CONSENT AND THE CARE OF THE BEREAVED
A CONSULTATION DOCUMENT
GOOD PRACTICE IN CONSENT AND THE CARE OF THE BEREAVED A CONSULTATION DOCUMENT
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Introduction ...................................................................................................1 Executive Summary.......................................................................................3 CHAPTERS 1. Post Mortem Examination - A Code of Good Practice: Rights of Patients and Relatives Responsibilities of Professionals..............................9 Standards for the Management of Post Mortem Examinations .................25 Information for Relatives: Hospital Post Mortem Examination of an Adult ........................................................................................................47 Consent Form for a Hospital Post Mortem Examination of an Adult ........................................................................................................57 4. Information for Parents: Hospital Post Mortem Examination of a Child...........................................................................................................61 Consent Form for a Hospital Post Mortem Examination of a Child............71 5. Information for Parents: Hospital Post Mortem Examination of a Baby ...........................................................................................................75 Consent Form for a Hospital Post Mortem Examination of a Baby ...........................................................................................................85 Consent Form for a Histopathological Examination and Disposal of Early Miscarriages ....................................................................................90 6. A Careplan for Women who Experience a Miscarriage, Stillbirth or Neonatal Death ........................................................................................93 Information for Relatives on a Coroners Post Mortem Examination.................................................................................................115 Consent Form for a Coroners Post Mortem Examination.........................125 8. How to Respond..........................................................................................129 APPENDICES A. Archiving and storage of Human Tissue.Responsibilities of an Archive Holder.............................................................................................133 A Code of Good Practice: Glossary of Terms..............................................137 Further Reading...........................................................................................147
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INTRODUCTION
A post mortem examination may be performed to inform relatives, clinical staff or legal authorities about the cause of death. Often relatives do not know what may be involved or what choices they have with regard to the post mortem examination or retention of organs/tissue and would benefit from information tailored to their needs. Similarly many health care professionals would welcome guidance on post mortem examination. The Department of Health, Social Services and Public Safety wants to ensure that good quality information and guidance on post mortem examinations is available to both relatives and staff in the health services. It is therefore developing new information and guidance for relatives and professionals. This material is being prepared as part of the implementation of recommendations contained in the Human Organ Inquiry Report of June 2002. This document consists of consent forms, information booklets, a code of good practice for professionals and a careplan for women who experience a miscarriage, stillbirth or neonatal death. It also invites your views on a number of specific issues. The aims of these documents are: to give clear guidance to the service regarding the taking of valid consent for post mortem examination and to ensure that the process of giving consent is focussed on the rights of individuals and their families; to ensure consent procedures reflect the needs of the relatives and the health professionals; to improve health service professionals knowledge of the law regarding consent to post mortem examination consent; and to develop documentation for the Health and Personal Social Services (HPSS) that supports and promotes good practice.
EXECUTIVE SUMMARY
Information for Relatives on Hospital Post Mortem Examinations of an Adult

This booklet provides information to assist relatives in understanding what a hospital post mortem examination is and the options available to relatives in providing consent for an examination. It will be given to relatives who have been asked to consent to a hospital post mortem being carried out on an adult. The booklet provides information on the post mortem examination, organ retention and disposal, post mortem reports, medical education and research. A glossary explaining some of the terms used in relation to post mortem examinations is also provided. It is anticipated that the written information will be supplemented as appropriate by discussions with hospital clinical staff.
Consent Form for a Hospital Post Mortem Examination of an Adult

It is proposed that this form will be used when a request is made to carry out a hospital post mortem examination on an adult. It is proposed that the form should only be completed after relatives have had the opportunity to read Information for Relatives Hospital Post Mortem Examination of an Adult. They will be also be given the opportunity to ask questions and discuss options with a senior healthcare professional. The form specifically asks about consent for a post mortem examination of an adult and provides a range of options relating to consent, testing of tissue samples, retention and disposal of organs. Professionals involved in taking consent will be expected to adhere to Post Mortem Examinations Good Practice in Consent and the Care of the Bereaved.
Information for Parents on a Hospital Post Mortem Examination of a Child

This booklet provides information to assist parents in understanding what a hospital post mortem examination is and the options available to parents in providing consent for an examination. It will be given to parents or legal guardians who have been asked to consent to a hospital post mortem examination being carried out on a child over 28 days of age and under 18 years. The booklet provides information on the post mortem examination, organ retention and disposal, post mortem reports, medical education and research. A glossary explaining some of the terms used in relation to post mortem examinations is also provided. It is anticipated that the written information will be supplemented as appropriate by discussions with hospital clinical staff.
Consent Form for a Hospital Post Mortem Examination of a Child

It is proposed that this form will be used when a request is made to carry out a hospital post mortem examination on a child. It is proposed that the form should only be completed after the parents have had the opportunity to read Information for Parents Hospital Post Mortem Examination of a Child. They will be also be given the opportunity to ask questions and discuss options with a senior healthcare professional. The form specifically asks about consent for a post mortem examination of a child and provides a range of options relating to consent, testing of tissue samples, retention and disposal of organs. Professionals involved in taking consent will be expected to adhere to Post Mortem Examinations Good Practice in Consent and the Care of the Bereaved.
Information for Parents on a Hospital Post Mortem Examination of a Baby

This booklet provides information to assist parents in understanding what a hospital post mortem examination is and the options available to parents in providing consent for an examination. It will be given to parents or legal guardians who have been asked to consent to a hospital post mortem examination being carried out on a baby less than 28 days old. The booklet provides information on the post mortem examination, organ retention and disposal, post mortem reports, medical education and research. A glossary explaining some of the terms used in relation to post mortem examinations is also provided. It is anticipated that the written information will be supplemented as appropriate by discussions with hospital clinical staff.
Consent Form for a Hospital Post Mortem Examination of a Baby

It is proposed that this form will be used when a request is made to carry out a hospital post mortem examination on a baby. It is proposed that the form should only be completed after the parents have had the opportunity to read Information for Parents Hospital Post Mortem Examination of a Baby. They will be also be given the opportunity to ask questions and discuss options with a senior healthcare professional. The form specifically asks about consent for a post mortem examination on a baby and provides a range of options relating to consent, testing of tissue samples, retention and disposal of organs. Professionals involved in taking consent will be expected to adhere to Post Mortem Examinations - Good Practice in Consent and the Care of the Bereaved.
Consent Form for a Histopathological Examination and Disposal of Early Miscarriages

This form will be used to obtain consent for histopathological examination and disposal of early miscarriages. The patient will fill it out in conjunction with a healthcare professional. Information to allow the patient to make an informed decision is contained on the consent form. This will be supplemented as appropriate by explanations from healthcare professionals.
Information for Relatives on a Coroners Post Mortem Examination

This booklet provides information to assist relatives in understanding what a coroners post mortem examination is. This booklet will be given to those whose relative has died in hospital and is required to undergo a coroners post mortem examination. The booklet provides information on a coroners post mortem examination, organ retention, disposal or further use, post mortem reports, medical education and research and inquests. A glossary explaining some of the terms used in relation to post mortem examination is also provided. While consent is not required for a coroners post mortem examination, consent is required for the use of tissue once the coroner has completed his inquiry and agreed to its release. It is anticipated that the written information will be supplemented as appropriate by discussions with hospital clinical staff.
Form for a Coroners Post Mortem Examination

It is proposed that this form will be used for those whose relative or friend has died in hospital and is required to undergo a coroners post mortem examination. While consent is not required for a coroners post mortem examination, consent is required for the use of tissue once the coroner has completed his inquiry and agreed to its release. This form will be used to record the decisions of the relatives in relation to the use of tissue following the post mortem examination and its subsequent release by the coroner. The relatives will be provided with the booklet Information for Relatives on a Coroners Post Mortem Examination and will be also be given the opportunity to ask questions. Professionals involved in completing the form will be expected to adhere to Post Mortem Examinations - Good Practice in Consent and the Care of the Bereaved.
Post Mortem Examinations - Good Practice in Consent and the Care of the Bereaved
This code, which is designed for use by health professionals, sets out recommended practice for all those involved in communicating with relatives of a deceased who may undergo or have undergone a post mortem examination and those involved in obtaining consent for such examinations. The document provides professional guidance in the following areas: Rights of Patients and Relatives. Who can give consent. Discussing the post mortem examination, seeking consent. Information to be given to families about post mortem examinations. Maintaining proper documentation. Disposal of the body, tissue and organs. Standardised consent forms and information booklets. Training and support for staff. Standards for the management of post mortem examinations. Archiving and storage of human tissue. Glossary of terms.
A Careplan for women who experience a Miscarriage, Stillbirth or Neonatal Death

This careplan is designed for use by health professionals involved in the care of women who experience miscarriage, stillbirth or neonatal death. The careplan has been developed to facilitate and promote quality care for all women who experience a miscarriage, stillbirth or neonatal death. It summarises principles of best practice, based on clinical and professional guidance, consistent with current legislation, and compatible with guidance on valid consent. The aim is to continually improve quality, provide effective care tailored to individual needs, and to learn from experience. The careplan should be used as a framework for the delivery of care. It will however require adaptation to suit specific local services and circumstances. It provides guidance on the minimum standards of care and the basis for the development of local care pathways.
Equality Issues
Section 75 of, and schedule 9 to, the Northern Ireland Act 1998 place obligations on Departments and other public bodies in carrying out their statutory functions. Such bodies are to have due regard to the need to promote equality of opportunity: Between persons of different religious belief, political opinion, racial group, age, marital status or sexual orientation; Between men and women generally; Between persons with a disability as defined in the Disability Discrimination Act 1995 and persons without; Between persons with dependents and persons without.
As part of this consultation process, the Department wishes to pay particular attention to the equality aspects of the proposed documentation. In an attempt to promote equality of opportunity, separate forms have been produced on consent for a hospital post mortem examination on an adult, a child and a baby, as well as a consent form for histopathological examination and disposal of an early miscarriage and a form for coroners post mortem examinations. Separate guidance booklets have also been developed containing information for parents regarding hospital post mortem examination on children or babies, information for relatives on hospital post mortems on adults and information for relatives on coroners post mortem examinations. Post Mortem Examinations - Good Practice in Consent and the Care of the Bereaved has also been developed. This document is intended to act as a guide to the service explaining the rights of relatives and the responsibilities of professionals.
The Department is aware that some particular issues around post mortem examination may have implications in terms of equality. For example the impact of a post mortem examination on burial arrangements may have a greater effect on some faith groups. Throughout this material the emphasis on valid consent, a relatives right to decline a request for a post mortem examination, and the focus on meeting the individual needs of families should help promote equality of opportunity. We would however like you to consider the equality issues and to identify any particular considerations that you think apply or that may need to be specifically addressed. We welcome comments on these or any other equality issues.
Human Rights Issues

The Human Rights Act 1998 came fully into force in October 2000. It provides additional focus and emphasis to the rights and freedoms of individuals guaranteed under the European Convention on Human Rights. There are 18 Convention rights and protocols which range from the protection and right to life, prohibition of torture, inhuman or degrading treatment or punishment, to the right to respect for private and family life and freedom of expression, which includes the right to receive and impart information. The Act requires legislation, wherever enacted, to be interpreted as far as possible in a way which is compatible with the Convention rights; makes it unlawful for a public authority to act incompatibly with the Convention rights; and, if it does, allows a case to be brought in a court or tribunal against the authority. The Department will take action to ensure its policies are compatible with the Human Rights Act. It is our intention that the guidance will contribute to the development of a human rights culture.
CHAPTER 1 POST MORTEM EXAMINATIONS - A CODE OF GOOD PRACTICE: RIGHTS OF PATIENTS AND RELATIVES: RESPONSIBILITIES OF PROFESSIONALS Introduction
Post mortem examination is crucially important in informing relatives, clinicians and legal authorities about the cause of death and in telling bereaved families about the possibility of acquired and genetic diseases which might need care and treatment. More widely, it is important in improving clinical care, maintaining clinical standards, increasing our understanding of disease, preventing the spread of infectious diseases, and in supporting clinical research and training. Respectful and sensitive communication with bereaved families is essential, both to help them take important decisions at a difficult time, and to ensure continuing improvements in future care.
Context
The publication of this code is one of a series of measures being taken by the Department of Health, Social Services and Public Safety in response to the recommendations of the Human Organs Inquiry Report, June 2002. It is broadly similar to guidance that has been issued in England and Wales and it anticipates the current wider review of the law relating to human tissue and the review of the Coroners system. It supplements guidance issued by the Chief Medical Officer in May 2003, HSS(MD22/03).
Scope Of The Code

This code sets out recommended practice for all those involved in communicating with families or others close to those who have died and with mothers1 of fetuses who may undergo or have undergone a post mortem examination. It seeks to ensure that: those close to the person who has died are given the opportunity to understand the reasons for hospital and Coroners post mortem examinations, the processes involved and their rights in the decision-making process; the wishes of the person who has died and those close to him or her are ascertained and respected; organs and tissues are not retained following post mortem examination without consent or other lawful authorisation, such as that of the Coroner2; the disposal of retained tissue and organs, stillborn or miscarried babies and where possible all products of conception, is in accordance with expressed wishes of the individual (where applicable) or those close to him or her, subject to meeting legal and health and safety requirements;
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general information about post mortem examinations is readily accessible as recommended by the Bristol Inquiry Report3 e.g. through the hospitals website, in booklets and on video, and from Coroners offices.
The code reminds HSS Trusts of the requirements to have in place arrangements for bereavement support and advice, and recommends that ongoing training is provided to ensure such services are effective, particularly in helping families in which a child dies4. The code also advises HSS Trusts and universities about giving feedback to families on the subsequent use of donated tissue for research. The code does not deal with body parts or organs held under the Anatomy (NI) Order 1992. If the person who has died expressed a wish that their body should be used for medical research under that Order i.e. for anatomical purposes, it will not be possible to carry out that wish if the body has been subject to a post mortem examination or if any organs except the eyes have been removed for transplantation. These exclusions may need to be explained to the family. Arrangements for the return of previously retained organs and tissue to families are set out in a leaflet on post mortem examinations issued to all homes in Northern Ireland. This and other information is available on the DHSSPS website at www.dhsspsni.gov.uk
Patients who are dying

This code does not deal as such with the support and information that hospitals should offer to dying patients. However, much of the decision-making after death will be easier if a patient has been able to make known his or her wishes before death. This is obviously a very sensitive matter which requires staff judgement in each case. However, if it is possible to do so ethically and compassionately, hospitals should help dying patients and their families to understand what may happen immediately before and after death. Hospitals must respect the views of patients who indicate that they do not wish to discuss particular issues and ensure that: any preferences about what happens immediately before or after death are identified and understood by staff, including any religious or cultural preferences; that contact is made accordingly with a religious representative, if required; the wishes of the dying person in respect of organ and tissue donation are ascertained and recorded, and the relevant procedures understood, including post mortem examination; consent is sought to the retention and use of organs or body parts for therapeutic purposes and for medical education or research, and this is recorded; wishes are ascertained and recorded with respect to the disposal of organs and tissue following post mortem examination, including those which may subsequently be used for medical education or research.
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This broadly applies, although with some important differences, to the parents of terminally ill or dying children. Although there are difficulties in raising these issues, parents need preparation for what is likely to happen immediately before and after their childs death and some parents will wish to discuss specific arrangements.
Post Mortem Examination

A post mortem examination (or autopsy) may take place either because the Coroner has ordered it or because it has been agreed upon by the hospital and the relatives5. This code sets out standards of practice in communications about both. These standards currently form part of an interim framework pending the outcome of reviews of the law on human tissue and of the Coroners system. Coroners may wish to implement these standards as good practice in advance of any changes to the Coroners system and it would be helpful to do this as part of a regionally agreed protocol between the HSS Trust and the Coroner. In any setting (health service, academic or other), human tissue or organs may only be removed, retained, or used if there is a proper accountability framework in place which ensures that valid authority is obtained. Before commencing the procedure, the pathologist is responsible for checking that the post mortem examination and any retention or use have been properly authorised. This should be done through the completion of the appropriate standard consent form6 or by the Coroner but does not imply that the pathologist should be the one to seek consent.
Quality standards
The Royal College of Pathologists has produced professional Guidelines on autopsy practice7 to consolidate, update and expand previous guidance. It recommends that post mortem examination should be done according to these guidelines. This Code assumes therefore that: an integral part of most post mortem examinations is the removal of tissue samples and indefinite retention of tissue blocks and slides8 for use in diagnosis, audit and review. This must be explained to the family. Specific consent must be obtained for organs or tissue to be used for research and education. medical students, doctors and other health care professionals may witness the post mortem examination or a demonstration of the findings for educational purposes, or for maintaining standards of care. This must also be explained to the family.
Coroners post mortem examination

A Coroners post mortem examination is carried out according to the provisions of the Coroners Act 1959 and the Coroners Rules 1963 in order to determine the
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cause of death. Although the familys consent is not required, the reasons for the post mortem examination and the procedures to be followed should be explained sensitively to the family. Relatives should be given information about when and where the examination is to be performed9 and told of their right to be represented at the post mortem examination by a medical practitioner, if they wish. A police officer10 will usually make contact with the family. If health service staff perform this role as part of a local protocol, they need to consider what advice to give in liaison and agreement with the local Coroner. There is legal provision for a copy of a Coroners post mortem report to be provided to the family for a fee, and they should be informed of this fact, when it will be available and of how to obtain a copy. Unless the Coroner has reason to do otherwise, a copy of the post mortem report should in any case be provided to the deceaseds GP with whom the family may wish to discuss the findings. An inquest may also be necessary following post mortem examination. The reasons for an inquest, and its procedure, should be fully and sensitively explained to the family in these cases. A police officer will usually do this10. Following a Coroners post mortem examination, the family may wish to donate organs or tissue for use in medical education or research, or the person who has died may have expressed such wishes. Ideally, a request for consent to eventual retention of organs or tissue following completion of the Coroners process should be made before12 the post mortem is carried out, following the same practice as described below for hospital post mortem examinations. However, this may be done retrospectively if time does not permit otherwise. The appropriate form for a Coroners Post Mortem Examination should be used.6
Hospital post mortem examination

A hospital post mortem examination is carried out at the request of the family or the hospital to gain a fuller understanding of the patients illness or the cause of death, and to enhance future medical care. During the post mortem examination tissue or whole organs may be preserved for diagnosis, for therapeutic purposes, for future medical education or for research. The valid consent of the nominated representative, or if one has not been appointed the next of kin, must be given before the post mortem examination is undertaken to ensure proper compliance with the legislation, unless the person who has died has already made an advance request5. Consent will be the basis on which the taking, storage and use of all tissue, including organs will be determined. This is based on the principle that in general a person should be able to determine what happens to their body or to any of its parts. An exception is made for the Coroners purposes or those associated with public health surveillance, quality control or clinical audit. In its 1989 Review of the Guidance on the Research Use of Fetuses and Fetal Material, the Polkinghorne Committee recommended that positive consent should
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be obtained from mothers2 to the use of her fetus or fetal tissue which is explicit in the information given about potential options for the use of such tissue.
WHO CAN GIVE CONSENT? Post Mortem Examination of Adults

The competent patient12 has the overarching right to give or withhold consent. This includes decisions to be taken after their death. In the absence of such an advance directive the competent patient can identify a nominated representative who is authorised to consent on their behalf. If no prior arrangements exist consent must be sought from the next of kin, who are ranked in order of authorisation: 1. 2. 3. 4. 5. 6. 7. Husband, wife or partner Parent or child Full brother or full sister Child of a full brother/full sister Stepfather or stepmother Half brother or half sister Friend of long standing
Relationships which appear in the same rank of the provision have equal rights to consent but those with the highest ranking order are designated next of kin. Where there is disagreement or objection among those of equal ranking the post mortem should not be done. All competent adult patients are asked to identify a nominated representative/next of kin on admission to hospital. Wherever possible, Trusts should make clear to patients next of kin the reasons for this nomination and its potential significance, that this is not simply a contact number but may have decision making powers on their behalf if they cease to be competent. A patient can delegate decision making powers on all matters or in restricted matters. In either case the nomination of such a representative must be documented, signed by the patient and signed as witnessed by hospital staff. The person nominated does not need to be a blood relative or spouse and may be a same-sex partner, or even a close friend13. Where an individual does nominate such a person, he or she must consider the nominated persons willingness to act in the event of the individuals incapacity or death. It is helpful for HSS Trusts to provide such information and advice clearly and routinely in a short information leaflet. Where the person who has died does not have immediate and obvious family members or a nominated representative, all reasonably practicable steps should be taken to trace one. What steps are taken should be documented. If no living relatives can be traced and there is no evidence of an objection on the part of the deceased person, the hospital may legally carry out the post mortem. However, careful consideration should be given as to whether it is ethically right to do so before the Chief Executive (or designate) makes his/her decision. The potential benefits of the particular post mortem examination in question will need to be weighed against the lack of information about the wishes of the person who has
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died. Chief Executives may wish to take independent advice on individual cases or consider setting up a formal arrangement to ensure independence of the decision. Such decisions must never be delegated to junior staff. There is no legal obligation to obtain consent from relatives/friends if the deceased has left clear instructions, preferably in writing, to consent for post mortem examination or that body or tissues could be used for medical education or research. However, hospitals might prefer to discuss this with the family and consider not going ahead with a post mortem examination or other procedure in the face of refusal or strong opposition from them, in order to avoid any upsetting conflict at a difficult time, or exacerbating the sense of loss. In any case, they will need to discuss the timing of the funeral, and how this might be affected by a post mortem examination.
Post Mortem Examination of Babies and Children

In the case of post mortem examinations on babies and children, consent for the post mortem, and retention of tissue/organs, must be sought from those with parental responsibility, which for a child in care may be social services. However, even if the natural parents did not have that responsibility, they might reasonably expect to be consulted. Wherever possible, discussion should be with both parents and both should sign the consent form14. If either parent is known to object, a post mortem examination should not be carried out. In a Coroners post mortem examination consent for further use of tissue and organs must be sought from those with parental responsibility but this will only be valid when the Coroner has completed his/her investigations and has agreed to their release. Written consent from the mother2 must be obtained for the examination of babies, stillbirths and fetuses of 12 week size and above (CRL 6cm+). Although the proposed legislation applies only to those born alive and in the past consent was not generally obtained for investigations on babies born dead before the age of viability (24 weeks) such practice is now at variance both with contemporary ethical standards and with public expectations. Different standards of consent apply to adults, young people and children in the consent for post mortem examination of their babies and children: all adults 18 years and above are assumed competent. Otherwise authorisation for consent is as outlined in Who Can Give Consent?; in the case of an incompetent adult authorisation is outlined in Who Can Give Consent?; 16-17 year olds are assumed competent unless proven otherwise. A parent cannot override that consent. This age group has an assumed right to refuse consent but this may be challenged where the consequence of refusal is of sufficient gravity the rule of proportionality applies in such cases;
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mothers under 16 years of age have the capacity to consent if they are proven competent. If a parent of this age is proven competent a grandparent cannot override that consent. If deemed incompetent the mother retains the right to be involved in the decision and to be given information about the post mortem examination process, tissue and organ retention.
Asking parents to agree to a post mortem examination of their baby or young child is particularly difficult. The Stillbirth and Neonatal Death Society has published specific and detailed guidance for health professionals on managing pregnancy loss and the death of a baby15.
Discussing the Post Mortem Examination: Seeking Consent

The way in which pathological investigation is discussed with next of kin is extremely important. They need to be given: an acknowledgement that consent is a process not a one-off event; honest, clear, objective information; the opportunity to talk to someone they can trust and of whom they feel able to ask questions; reasonable time to reach decisions about a hospital post mortem examination and about any use of organs or tissue; privacy for discussion between family members; support for relatives if they need and want it, including the possibility of further advice or bereavement counselling, or psychological support. Support may be available from an organisation with which a relative is already in contact, particularly if he/she has been a long-term carer of the person who has died.16
Only once the family has had time to reach a decision should they be asked to sign a consent form. Many people carry organ donor cards. The family of the deceased person may well be aware of his or her wishes about donation of organs or tissue for transplantation and raise this possibility. Discussion about donation may have taken place in the hospital and the family may have decided to donate if possible. All efforts should be made to allow those who wish to donate organs or tissue to do so and explanations should be given where it is not possible. Where organ or tissue donation is a possibility the person talking to the family should make early contact with the local transplant co-ordinator for advice. There may be local variations but every hospital should have clear arrangements in place for contacting the co-ordination service or otherwise seeking advice. Those seeking consent for a hospital post mortem examination should be a doctor of at least specialist registrar level and be well informed, with a thorough knowledge of the consent process. He or she should have been trained in the
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management of bereavement and in the purpose and procedures of post mortem examinations. Ideally, he/she should have witnessed a post mortem examination. It is usually the responsibility of the deceaseds clinician to seek consent, knowing the medical problems and the unresolved aspects that merit investigation. However, there may be several possibilities for who actually discusses the post mortem examination and obtains consent which in most instances will involve a team approach in the care of the bereaved. Every Trust must have an effective procedure in place. Responsibility for obtaining consent should not be delegated to untrained or inexperienced staff. Wherever possible, consent is best obtained by a person with whom the relatives have an established relationship. If the consultant in charge has not had close dealings with the patients family during the last illness, the family may find it helpful also to have someone present who they know and trust, such as the hospital chaplain, nurse or midwife.17 Whichever approach is taken, all HSS Trusts should have a designated, named individual who is available to provide support and information to families of the deceased where a post mortem examination may be required, whether this is requested by a hospital doctor or a Coroner.2 If necessary, before the discussion with the family, the responsible clinician should contact the pathologist who will perform the post mortem examination so that accurate guidance can be given on which, if any, tissue or organs are likely to be retained and for what period and purpose and the implications of any decisions made by the relatives to restrict the post mortem examination.
What should the discussion cover?

The process of such a discussion should include: full and clear information for relatives about the purpose of the post mortem examination, the procedures and the range of choices available to them for valid consent to be obtained;18 time to consider the information on which to base their decision; identification of any time limits and the reasons for them. Time may be short, for example because an earlier post mortem examination will obtain more or better information; factual information provided in written form that allows the family to take it away, including a written record of the discussion and the agreement reached. A signed copy of the consent form should be included in the patients record and/or Coroners file as appropriate; if possible, an option for relatives changing their minds, within an agreed time limit should be included;
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the name and telephone number and/or e-mail address of the hospitals designated bereavement adviser17 so that relatives can ask further questions at a later stage; ready access to general explanatory material in different formats e.g. a hospital website, if available; standardised HPSS consent forms for post mortem examinations and accompanying information leaflets have been designed to ensure these points are covered and should be used in all cases.6
The content of the discussion should include: a basic explanation of what happens in a post mortem examination, including the removal, retention and use of tissue samples for diagnosis; the benefits of a post mortem examination and why the doctor thinks it would be valuable in this case, and/or the reasons for the Coroners involvement; the possible outcomes, particularly the limitations of a restricted post mortem examination; possible alternatives to a full post mortem examination, making clear the limitations to these, and the benefits of a full post mortem examination; where, when and by whom the examination will be performed, if this information is available. For parents in particular, consenting to a post mortem examination may feel like handing over a part of themselves. They need to know where their child will be, for how long and when they can have access to the body again. If the post mortem examination is to be carried out at another hospital, the body should not be transferred any earlier than is necessary and should be returned as quickly as possible afterwards; information about tests needed and whether these might cause delays in the process; when, to whom and how the results of the investigation will be made available and explained; options for what will happen to the body or remains, and any organs or tissue removed (including tissue blocks and slides) after the examination; whether consent is to be given for retention or use of tissue or organs after the post mortem examination, and for what purposes; explanation of the need for any images to be made (including photographs, slides, X-rays, CT scans, etc), and of their use. The proposed legislation does not require specific consent for the taking of photographs of organs or body parts or of histology slides. Nor is specific consent needed to use them for any purpose provided that, before use, the images are effectively anonymised by the removal of any identifying marks;19
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whether organs or tissue can be retained without limit of time for medical education and research and whether there are particular uses which the family would wish to exclude from any general consent given; the timing of burial or cremation so that, where possible, any human material removed can be reunited with the body for burial or cremation, if the family wish. This will need to be done in consultation with the pathologist and in the case of a Coroners post mortem examination, with the approval of the Coroner;
In some religions, including the Jewish, Muslim and Hindu faiths, it is important that a funeral should take place as soon as possible, usually within 24 hours of death. In such cases, every effort should be made to carry out a post mortem examination within that period. If this is impractical or if organs can not be returned within that period, this should be explained to relatives. The family will need the help of hospital staff to get the necessary certification completed urgently before the funeral. In the case of a Coroners post mortem examination, relatives do not have the option of refusing it, but may want to discuss with the Coroners staff the practical or spiritual implications of any delay. If the pathologist feels that the conditions decided by the family call into question or limit the value of the post mortem examination, or make it difficult for a post mortem examination to be carried out to a sufficiently professional standard, the family should be advised of these limitations or a decision taken that the investigation should not be carried out. This eventuality should be explained to the family at the time of discussion. However, pressure must not be exerted upon the family which would render invalid any consent given. Consent for the post mortem examination must be separate from consent to the retention and use of tissue and organs. The family must be clear that these are two separate decisions. However, whenever possible the family should be asked before a Coroners post mortem examination takes place whether they might agree to the subsequent retention of tissue and organs removed and their use for certain specified medical purposes once the cause of death has been established and the Coroners duties are complete20. The discussion must make clear to the family: the definition of human tissue - that it includes organs, parts of organs and tissue in various forms, such as frozen sections and samples fixed in paraffin wax; the various purposes for which tissue might be kept; options regarding consent or refusal for retention of any particular organ or tissue and for any particular use.
Although staff may recognise the need to obtain a speedy decision in order to maximise the benefit from a post mortem examination, it is important that they do not convey to the family any sense of being rushed. Before the post mortem examination many relatives will want to spend as much time as possible with the
19
person who has died and it is important to try to ensure that they have this time. However, if more information or better results might be obtained from an earlier examination, then it is also important that this is explained.
Cultural traditions and language differences

Attitudes to post mortem examination, burial and the use of organs and tissues after death differ greatly. The individual designated to provide bereavement support must be fully informed of the values and beliefs of a wide range of cultures and religions and particularly those of the local community. All health professionals need to be aware of these values and respond to them with sensitivity, and Trusts must ensure that the necessary training and support is given to staff to ensure that they are equipped to identify and meet a range of needs and wishes of bereaved relatives. However, each case and decision is an individual and personal one and must be treated as such. The family, from any background, may not always know what is traditional or customary within the community when a death occurs and may need time to talk to other family and community members. Valid consent can only be given if proper communication has taken place. All Trusts must consider the needs of families whose first language is not English or where family members have special needs. Consent forms should be available in all the main local community languages and staff should establish whether or not those concerned can read them. If necessary, information should be made available by other means such as video or audiotape. Use should be made wherever possible of a professional interpreter. The interpreter must be able to understand and subscribe to issues of clinical confidentiality. In some cases hospital staff have relied on one family member to speak or interpret for the others. However, someone suffering the shock of bereavement may not be in a good position to do this or the individual may not be competent to do so. Children of the family should not be used as interpreters in relation to any formal procedure.
INFORMATION TO BE GIVEN TO FAMILIES ABOUT POST MORTEM EXAMINATIONS Results from a Hospital Post Mortem Examination
Before any post mortem examination is carried out, the family should be informed as to when the results are likely to be available. For a hospital post mortem examination relatives should be offered an appointment time that will allow them to discuss the results and other issues with the clinician responsible for the care of the person who has died and/or the pathologist or other specialist clinician where that would be helpful. Families will usually be anxious to receive results of the investigation as soon as possible. They will be better able to tolerate the waiting time if they understand the reasons for it. Trusts will need to plan for the resource implications of this where it has not been standard practice to date.
20
Some families will not want to know the results of the post mortem examination or will not wish to discuss them in detail. Their wishes must be respected. However, the opportunity to discuss them at a later date should remain open to them and they should be told this. If necessary a meeting with relatives in relation to the results of the post mortem examination should allow for as wide a discussion as the family want. Although in general, information about deceased patients should be treated in confidence, in such circumstances relatives wishes for relevant information should be met with attention and sensitivity. For parents who have suffered pregnancy loss or the death of a baby, for example, the pathology results may raise many issues which are important to discuss as a couple. The issues raised may require further discussion with other health professionals such as a genetic specialist. Parents should be offered the opportunity of such meetings with the possibility of taking them up at a later date, and should be given full, written contact information so that they may do so when they feel ready. They should also be given contact arrangements if they have questions later as well as details of national and local support agencies.
Results from a Coroners Post Mortem Examination

If a post mortem examination is ordered by a Coroner, its purpose is to identify the medical causes leading to death and will be limited in scope. The Coroner must be consulted before information about the examination or any copy of the report is made available to any other person. If the death is still subject to an inquest, any such discussions may be inappropriate and should be undertaken only with the agreement of the Coroner. Families should be warned of this eventuality in advance wherever possible. Coroners Rules regulate access to the post mortem reports provided for Coroners and a fee may be payable for a copy of a report. With the permission of the Coroner a copy of the full post mortem report may be offered to relatives of the person who has died. They should be helped with the necessary preparation for what such a report includes. The report should also be given to the deceaseds GP and/or treating clinician and to the mothers GP in the case of a neonatal death or stillbirth. Relatives should be informed that this will be done. Help in interpreting the report should be provided by a relevant clinician.
Information about further use of tissue and organs

If families have given consent for the retention and use of tissue and organs after the post mortem examination, they should be asked if they wish to receive general information about how post mortem tissue is subsequently used. The level of information offered will vary according to use. If tissue is used for teaching, a leaflet on the value of medical education and the contribution of organs and tissue may be appropriate. For research, the discussion will need to include how much information they wish to have shared with them. These wishes should be recorded. Any restrictions imposed on the use of organs or tissue and wishes for its eventual disposal,
21
should already have been clearly documented as part of the process for obtaining consent.
Maintaining Proper Documentation

The appropriate standard form for Coroner and hospital post mortem examination should be used on every occasion. Documentation of all material retained should be maintained so that at any time the location and use is recorded and may be fed back to relatives if this is desired. The pathologist who undertakes the post mortem examination is responsible for ensuring this happens. The initial record should include: details of who gave consent; exactly what the consent related to which tissue or organs and whether tissue may be used for medical education or research purposes following diagnostic use; any wishes for disposal; what tissue is removed and retained, and how much.
In addition the archive holder, (see Appendix A) who is responsible for ensuring the security of continued storage of the tissue, must ensure that an adequate record is maintained: what is done to the tissue, organs, blocks and slides; if relevant, when, where and to whom tissue was transferred; if relevant, when and how disposal is undertaken; where the tissue is used for research, the record also needs to include the date when, the place where, and by whom, ethical approval was granted.
A copy of the record should be transferred with any tissue and the record should subsequently be maintained and updated by the archive holder21 responsible for the storage and/or use of tissue at the receiving site. The archive holder and the hospital should periodically take stock of all human tissue and organs that they have kept from post mortem examinations and report this annually to the Trust Board. The Human Tissue Authority will issue standards for documentation and inspection.
Disposal of the Body, Tissue and Organs

Tissue and organs should be handled respectfully at all times in accordance with any reasonable wishes expressed by families or the deceased person. The method of disposal must be legal.
22
Many of those bereaved are unfamiliar with what needs to be done following the death of a relative. The Trusts bereavement adviser/officer or the Coroners office should explain that the deceaseds nominated executor has responsibility for the disposal of the body and provide the family with information about the options available to them for cremation, burial and/or funeral arrangements, the legal requirements and any other relevant information.22 This information is needed before the family can make proper decisions about what happens to any tissue or organs retained at post mortem examination. Staff need to be familiar with local hospital arrangements, including those for babies born dead before 24 weeks gestation, what is available locally, basic legal requirements and what arrangements relatives may wish to make concerning organs and tissue. A summary of this information should be available in written form that the family can take away with them. They may wish to discuss it with other family or community members before making a decision. Basic options are cremation or burial and usually a funeral or other religious or non-religious ceremony, either arranged by the family with help from the hospital if desired or arranged by the hospital. Hospitals should offer this in the event of a stillbirth. Relatives may want to be assured about the suitability of any burial or other arrangements made by the hospital.23
Disposal of fetal remains or products of pregnancy loss

In the case of pregnancy loss, stillbirth or neonatal death, the same options should be available where there is an identifiable body or remains, regardless of size or gestational age. A funeral can be held if parents wish. When there is no identifiable body or remains, parents may still wish to cremate or bury what has been lost. These options should always be offered. Some parents who suffer an early pregnancy loss wish to bury their babys remains respectfully themselves and staff can support parents in these wishes. Some parents will choose not to take part in or have any involvement with what is done with the remains of their baby or fetus. These wishes must be respected. Those concerned should be told, if they wish to hear, what will happen to their babys body or remains if they do not take part in the arrangements themselves, and this should be documented. They should be given information about whom to contact if they would like to make different arrangements and in what timescale.
Later disposal of tissue and organs

Where the family have given their consent to the retention of tissue or organs, they should be offered the option of allowing the hospital to dispose of the tissue and organs after its further examination or use. If material is to be incinerated, care should be taken to ensure that the method is appropriate to the material in question. If the body of the deceased person has already been buried or cremated and the family request that remaining tissue or organs are to be returned later, these should be released:
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preferably to funeral directors acting for those who have legitimate responsibility for the disposal of the body.24 with authoritative confirmation of the identity of the tissue or organ. with confirmation that the cremation or burial authorities have agreed in principle to accept the remains for disposal. costs for re-interment are the responsibility of relatives who chose to have material returned and they should be informed of this at the time of giving consent.
There is no legal bar to releasing retained material directly to the family, but the proposed method of disposal must be lawful and safe, which may be difficult to ascertain.25 The pathologist should notify the recipient or the burial or cremation authorities, of any hazards associated with the tissue and its fixative and obtain confirmation that they are able to handle them appropriately. Because of the potential health hazards, releasing organs and tissue direct to relatives for their indefinite retention is not generally advisable.
Standardised Consent Forms and Information Leaflets

To support implementation of this code, the Department of Health, Social Services and Public Safety has produced standardised consent forms and accompanying information leaflets for hospital post mortems. These are issued alongside this code of practice and the hospital forms should be adopted by every HSS Trust in Northern Ireland. Consent for histopathological examination of early pregnancy loss.26 Consent for hospital post mortem examination of a baby.27 Consent for hospital post mortem examination of a child.28 Consent for hospital post mortem examination of an adult.29
The consent of relatives is not required in a Coroners post mortem examination but the further use of organs, tissue, blocks and slides requires the consent of those authorised to do so. In partnership with the Northern Ireland Court Service a standardised form has also been produced for a Coroners post mortem examination. Coroners post mortem examination.30
These forms and further information are available on the DHSSPS website www.dhsspsni.gov.uk Further information for relatives is also available at www.organretention.info
24
Training and Support for Staff

Training in post mortem processes, consent, effective communication and interpersonal skills is important for successful implementation of most aspects of this code and to enable clinical and other staff to manage bereavement well. This is already required for HPSS staff and more opportunities for training are welcomed by Coroners and their staff. The development of joint protocols between the HPSS and the Coroners Service locally may provide opportunities for considering training needs in liaison with the relevant bodies such as the Police Service of Northern Ireland and Northern Ireland Court Service. Finally, the death of a patient may be upsetting not only for the family but also for members of the clinical team involved in his or her care. Their needs must be recognised and these should be considered when bereavement services are planned, in training staff in procedures for obtaining consent for post mortem examinations and in the provision of support at the time of death. Important elements of provision are: a supportive working environment and a team or organisational culture in which the impact of loss and the need for support are acknowledged; opportunities for case review and de-briefing; access to confidential, non-managerial support; training, so that staff are equipped to manage bereavement and loss and to handle questions on difficult issues that families may understandably wish to raise; training in autopsy procedures for those obtaining consent from relatives.
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CHAPTER 2 STANDARDS FOR THE MANAGEMENT OF POST MORTEM EXAMINATIONS
Standard 1 - Pathology Practice Hospital Post Mortem Examinations Standard 2 - Consent and Information Standard 3 - Storage, Handling and Disposal Standard 4 - Record-keeping Standard 5 Education Standard 6 Bereavement Care
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Standard 1 - Pathology Practice Hospital Post Mortem Examinations Standard Statement Pathology Examination and Reporting
1a Where a post mortem examination takes place both the examination and report follow the guidelines set by the Royal College of Pathologists (RCPath). The post mortem examination is carried out as soon as appropriate after consent is received and the initial and final reports are sent to the clinician in charge of the case within a reasonable timescale. There is evidence that post mortem examinations and reports carried out to RCPath standards result in increased accuracy of diagnoses and reporting of the cause of death, and provide useful information for relatives and clinicians. The information in the report must be made available promptly so that discussion with clinical staff involved in the case, and with the relatives, can take place as soon as possible after death.
Rationale
27
Standard 1 - Pathology Practice Hospital Post Mortem Examinations Criteria Essential
1a.1
Post Mortem examinations are audited according to the most recent RCPath guidelines. Protocols and procedures are in place to ensure accurate identification of the deceased. Information for relatives, if requested, can be made available in nonmedical language. The post mortem examination is supervised, or carried out, by a pathologist on the specialist register of the General Medical Council (GMC). Paediatric, perinatal and neuropathological post mortem examinations are supervised or carried out by a pathologist trained in this specific field. The post mortem examination is carried out by the department performing the examination within 2 working days of receipt of authorisation. 90% of preliminary reports are sent to requesting clinicians within 2 working days of completion of the post mortem examination. 90% of final reports in routine cases are sent to requesting clinicians within 6 working weeks. Where reports are delayed information about the delay is available. Information from the post mortem examination is communicated by the clinical team to the deceaseds GP.
1a.2
1a.3
1a.4
1a.5
1a.6
1a.7
1a.8
1a.9
Desirable
1a.10 Other consultants involved in recently caring for the deceased in life are identified to the pathology department and also receive copies of the final report.
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Standard 1 - Pathology Practice Hospital Post Mortem Examinations Standard Statement Communication
1b. There is effective communication between all those involved before and after the post mortem examinations and there is an identified member of staff to facilitate this. Good communication between all those involved, before and after the post mortem examination reduces unnecessary delays, anxieties and concerns, and can improve the accuracy and flow of information. In particular, the pathologist requires information on the deceased and the questions that the relatives and clinicians wish answered at post mortem examination.
Rationale
1c.
Personal, religious and cultural values and beliefs of the deceased and their relatives are respected.
Awareness and respect of all personal, religious and cultural values and beliefs are fundamental values of the Northern Ireland HPSS.
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Standard 1 - Pathology Practice Hospital Post Mortem Examinations Criteria Essential

1b.1 The pathologist carrying out the post mortem examination is provided with a clinical summary and a copy of the consent form which details the relatives wishes. The pathologist has access to the deceaseds medical records, where these are available. There is a procedure to encourage the requesting clinician to attend the post mortem examination. Relatives are offered: the opportunity to speak to clinical staff involved in the care of the deceased and key information is provided in non-medical terms if possible; and a copy of the post mortem examination report, available through their General Practitioner or consultant if they wish it.
1b.2
1b.3
Desirable
1b.4 There is a designated member of staff, appropriately trained, whose primary function is to be a point of contact for relatives, to ensure completion of all appropriate forms and co-ordinate communication between the clinical staff, pathologists and relatives. A summary of the post mortem examination report is available to relatives in non-medical language, if requested.
1b.5
Essential
1c.1 1c.2 Information on bereavement, religious and cultural support is available. A translation service is available.
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Standard 2 - Consent and Information Standard Statement Consent Process & Documentation
2a. Consent is given for all hospital post mortem examinations, using the regional consent forms when these become available. Forms should take into account the wishes of the deceased and where appropriate, the wishes of the relatives. Consent for post mortem examination is a sensitive subject for both those requesting it and those granting it. The consent process should be as straightforward as possible to minimise the risk of additional distress or confusion. There will be separate consent forms for early pregnancy loss, adult, child and baby post mortem examinations.
Rationale
Responsibility for Consent

2b. Consultant clinical staff take overall responsibility for end of life procedures on the ward and maintain close contact with relatives, the pathology department and those involved in support of the deceaseds family. This minimises the risk of breakdowns in communication, which can be distressing for both relatives and staff. Responsibility for the deceased remains with the consultant who cared for that person in life until all clinical follow-up and bereavement care is complete.
Information for Relatives

2c. Information about both the post mortem examination and the consent process is available and is provided to relatives. Trusts undertake ongoing audit of the processes involved in consent for post mortem examinations. The use of standard information leaflets for adults, children and babies supports the process of requesting and giving consent. Audit of the process of seeking consent and the information supplied to relatives can assist in improving the clinical service. Audit of the consent process will build public and clinical confidence in the post mortem examination process.
31
Standard 2 - Consent and Information Criteria Essential
2a.1
The regional consent forms for adults, children, babies and early pregnancy loss must be used.
2b.1
Consent for post mortem examination will only be taken by a specialist registrar or hospital consultant. There is evidence of close supervision of junior medical staff by consultants.
2c.1
The regional standard information leaflets for adults, children and babies must be used. Audit is facilitated by the Trust audit department, and local protocols are in place to demonstrate: audit of the consent process and relatives experience; and mechanisms to provide feedback to all staff involved.
2c.2
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Standard 2 - Consent and Information Standard Statement Education

2d. Where hospitals teach medical students on post mortem examinations, this is explained during the consent process. 2e. Where organs, tissue blocks and slides are retained for use in teaching, consent is obtained. It is made clear to relatives at that time that their consent may be withdrawn at any time. Teaching is necessary for clinical education, and post mortem examinations provide valuable opportunities for learning.
Rationale
Research
2f. Organs ,tissue blocks and slides which have been taken for diagnostic purposes can only be further retained for research if appropriate consent is provided. Information about the purpose of any research will be made available to the relatives if requested. Organ, tissue blocks and slides are a valuable resource for research which may advance medical knowledge and benefit society.
33
Standard 2 - Consent and Information Criteria Essential

2d.1 Consent forms and leaflets include information on teaching where appropriate.
2e.1
Relatives wishes in relation to the use of organs, tissue blocks and slides for teaching are clearly indicated on the consent form.
2f.1
General information on research and its governance is provided for relatives as part of the consent process. Relatives wishes in relation to the use of organs, tissue blocks and slides for research are clearly indicated on the consent form. If requested, relatives should be given information about the use of material in specific research projects, if this is available. There is a protocol for obtaining consent for research, which includes information about how this material is to be used and stored. There is evidence that consent has been obtained. There is evidence of regular review of teaching stock to avoid excess retention.
2f.2
2f.3
2f. 4
2f. 5 2f. 6
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Standard 3 Storage, Handling and Disposal Standard Statement Glass Slides and Tissue Blocks
3a. Tissue samples are taken for diagnostic purposes. All glass slides and tissue blocks taken at post mortem examination for diagnostic purposes are retained as part of the medical record of the deceased and are stored securely, unless otherwise requested by relatives. The tissue samples retained are chemically treated to allow preservation for initial diagnosis. This tissue is retained as part of the deceaseds medical record to allow diagnostic review and further examination which may benefit the deceaseds family and society in general, as medical knowledge advances. Glass slides and tissue blocks should also be retained for the following valuable purposes: to support audit which will improve care; for teaching and education of health professionals; under the direction of the Coroner; for research purposes.
Rationale
Organs
3b. Organs which require to be retained for diagnostic purposes are disposed of following diagnosis, with the knowledge and instruction of the relatives of the deceased. Full diagnostic examination of some organs requires a period of preparation and it may not be possible to return the organs to the body before the funeral (this would usually take place within 2-3 days). To promote public confidence in the post mortem examination process, relatives need to be informed when organs cannot be returned to the body immediately after post mortem examination, and have their wishes taken into account when the organs are disposed of.
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Standard 3 Storage, Handling and Disposal Criteria Essential

3a.1 3a.2 3a.3 3a.4 Glass slides are held for a minimum of 10 years. Tissue blocks are held indefinitely. There is a written policy to ensure secure storage. There is a written policy covering disposal where a decision is taken not to retain tissue samples or return them to relatives.
3b.1 3b.2
There is documentation of the relatives wishes. Every hospital carrying out post mortem examinations has a written protocol for the storage, handling and disposal of organs. The arrangements for disposal of an organ are the responsibility of the department carrying out the post mortem examination, in line with local protocols. Information on these arrangements is recorded in the departmental database. This information is also recorded in the database of the pathology department carrying out the analysis when this differs from the department carrying out the post mortem examinations. Arrangements for the return of organs, blocks and slides are made in accordance with relatives known wishes.
3b.3
3b.4
36
Standard 3 Storage, Handling and Disposal Standard Statement Residual Tissues

3c. Small pieces of residual tissue which are not processed or stored as part of the deceaseds medical record are disposed of lawfully either by the hospital or by relatives. Samples require to be of a size to allow for processing. This sometimes results in small pieces of tissue remaining after block selection. All material should be accounted for.
Rationale
Fetuses
3d. Any fetus or embryo having pathological examination is disposed of lawfully and in accordance with parents wishes. Awareness and respect of all personal, religious and cultural values and beliefs are fundamental values of the Northern Ireland HPSS. Such awareness and respect reduces the risk of causing any additional distress.
Transport
3e. Relatives and funeral directors are informed if the deceased, or organs taken for diagnosis, need to be moved to another hospital for post mortem examination. Facilities for post mortem examinations are not available at some hospitals, which necessitates the movement of the deceased between hospitals. It is also sometimes necessary to transport organs to other sites where regional centres exist for specialist examination. It is important to keep relatives informed of transport arrangements as this can reduce anxiety and facilitate funeral arrangements.
Transport arrangements for the deceased and/or organs are fully documented.
37
Standard 3 Storage, Handling and Disposal Criteria Essential

3c.1 There is a written policy for the disposal of small pieces of residual tissue which includes recording how, where and when they are disposed of, including return to relatives. Relatives are informed of these arrangements, upon request.
3d.1
There is a consent form for pathological examination and disposal of fetuses and fetal tissue. Parents may make alternative arrangements if they wish, and these are documented.
3e.1
There is a written protocol for the movement of the deceased and organs between sites. This details how these will be moved and by whom. The protocol covers informing relatives and funeral directors. There is a system for recording: the organs transported and the reason why; the sending and receiving centres; who sent and received the organs and the dates; and dates when the organs are returned to the referring department.
3e.2
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Standard 4 - Record Keeping Standard Statement Rationale
4a.
Every post mortem examination is fully documented and the records retained in accordance with the most recent Royal College of Pathologists Guidelines (NB tissue blocks and slides are a part of the medical record). It is the responsibility of the head of the pathology department carrying out the post mortem examinations to ensure that the above information is recorded.
A full audit trail is required for each post mortem examination to ensure that Trusts can account for the action taken before, during and after post mortem examinations. This is also required so that any enquiry can be dealt with efficiently and accurately.
Clinical Audit
4b. Clinical audit is a necessary part of medical practice. Quality assurance programmes are essential to the maintenance of standards which cannot be easily measured without access to pathology data. Clinical histories cannot be audited These samples can also be used anonymously. to validate diagnostic tests and improve clinical care. Clinical audit is only carried out on samples which were initially taken for diagnosis and consented for such use. This practice is subject to the rules of medical confidentiality.
39
Standard 4 - Record Keeping Criteria Essential

Minimum data to be recorded in the post mortem examination report. 4a.1 Documentation from each post mortem examination includes a copy of the following: consent form; clinical summary; and post mortem examination report. A copy of the following documents are filed in the department carrying out the post mortem examination: consent form; clinical summary; and post mortem examination report. The medical records of the deceased contain a copy of the consent form and a copy of the post mortem examination report. All samples taken for cytology, histology and all other investigations are detailed in the post mortem examination report.
4a.2
4a.3
4a.4
4b.1
There is evidence that material used for clinical audit and quality control has been subject to diagnosis and subsequent report, and has consent for such use.
40
Standard 5 - Education Standard Statement Rationale
5a.
All medical staff in training in Trusts are instructed in completing the documentation required following death, the procedures and reasons for post mortem examination, and the ethical and medico-legal framework in which death occur.
The documents required after death need to be completed accurately and in a timely manner. Medical staff need to understand all the procedures and reasons why a post mortem examination is performed and when a death needs to be referred to the Coroner.
5b.
All staff are aware that, after death, a body can still be a potential source of infection, and observe current Advisory Committee for Dangerous Pathogens (ACDP) and Health and Safety Executive (HSE) guidelines.
All staff in contact with the deceased are potentially at risk of cross-infection and need to be aware of the level of risk and how to manage it. They also need to be able to advise relatives of the risk involved in viewing and handling the deceased before and after post mortem examination. Undertakers should be given sufficient information to minimise the risk of infection. Mortuary Technical Officers (MTOs) assist in the post mortem examination and need to understand the laws governing the post mortem examination, including consent.
5c.
Mortuary Technical Officers (MTOs) receive training in all aspects of mortuary practice, which includes the educational and research value of a post mortem examination as well as its diagnostic function and the risk of infection.
41
Standard 5 - Education Criteria Essential

5a.1 There is an induction programme, with input from pathologists, for all clinical staff dealing with death, which covers: reasons for a post mortem examination; the procedures involved; the consent process; religious and cultural issues; issuing death certificates; cremation regulations; and deaths that need to be reported to the Coroner. Further training is available in communication skills and the bereavement process. All staff involved in handling the deceased before and after a post mortem examination are aware of current Health and Safety regulations, including control of infection notification procedures. Control of infection notification procedures are in place for the deceased (if required).
5a.2
5b.1
5b.2
5c.1
Mortuary Technical Officers (MTOs) are appropriately qualified or work under supervision.
42
Standard 6 - Bereavment Care Standard Statement Policies and Procedures

6a. That Trusts are responsible for ensuring that policies and procedures are developed in line with nationally agreed standards for the management of death and bereavement. There is a substantial evidence base to demonstrate the enduring impact on the bereaved of the management of care at the time of death. Good policies and procedures benefit patients and their families as well as protect individual staff members and their employers. National standards now apply.
Rationale
Standards of Practice
6b. That Trusts are responsible for ensuring that all staff in contact with patients and their relatives practice to the highest standards of care before, during and after the death of the patient. Clinical care involves the whole of life, including death and dying and the care of bereaved relatives. This is reflected in the development of palliative care services. Explicit statements of standards of care ensure individual patient and public confidence in the service. Such policies and procedures ensure that patients and their relatives receive equality of treatment and equity of access to the best standards of bereavement care.
43
Standard 6 - Bereavment Care Criteria Essential

6a. Policies should be implemented in Trusts for the range of issues associated with bereavement care, sensitive to the needs of individual circumstances, cultures and religious beliefs.
These include policies and procedures on: Consent; DNAR (Do not attempt resuscitation); Advance Directives; Bereavement Care Policy; Hospital Post Mortem Examinations; and Coroners Post Mortem Examinations. Bereavement care services should be available within Trusts, including follow-up or liaison services to relatives, if appropriate. Policies and procedures are subject to systematic audit and review to ensure safe practice and that they remain compliant with national guidelines.
6b.
Staff are aware of and prepared to practise the required standards of bereavement care. Information packs are made available to patients, relatives and agencies acting in their support. Systematic audit of standards of care should be undertaken.
44
Standard 6 - Bereavment Care Standard Statement Training and Development

6c.1 That staff have access to and avail of training in all aspects of bereavement care, appropriate to their level of contact and role with patients and families. That all staff in maternity and childrens services, or in other services where children are treated, are required to undertake continuous professional training in bereavement care. Ongoing training and education are necessary for ensuring safe practice and are a required standard for clinical governance.
Rationale
6c.2
Following the death of a child, baby or mother in child birth, care that is sensitive to the special needs of parents and families is needed, for which staff will require additional training.
Bereavement Support
6d.1 That support and/or counselling is made available to staff working with patients and bereaved relatives. Employers owe a duty of care to staff undertaking difficult and psychologically demanding work for which training and appropriate support can enable more effective working and reduce the impact of such work.
45
Standard 6 - Bereavment Care Criteria Essential

6c.1 At induction all staff are made aware of the issues associated with bereavement care such as consent, communication and the management of death and dying. Ongoing training is required for the core issues identified, with an emphasis on education on the grief process and impact of trauma and ethics at the end of life.
6c. 2
In addition to the core training required at induction and for continuous professional development that staff in these services undertake training and education in the special circumstances and issues associated with the death of a child or pregnancy loss.
6d.1
Trusts must ensure that arrangements are in place to support staff working with patients and relatives.
46
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CHAPTER 3 INFORMATION FOR RELATIVES HOSPITAL POST MORTEM EXAMINATION OF AN ADULT
Information about an Adult's Post Mortem examination

We hope that the information in this booklet will help you to understand the reasons for undertaking a hospital post mortem examination, and what is involved. Please take time to read and discuss it with the doctors and health professionals before you complete the consent form. They will try their best to answer any questions you may have.
You may contact:
on this telephone number
between
(please state times available)
This leaflet does not deal with organ donation for transplantation. Please ask if you would like to know more about this.
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A post mortem examination

A post mortem is an external and internal examination of a body after death. It is also called an autopsy. Post mortems are carried out by pathologists 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 your relatives illness.
The importance of a post mortem examination

A post mortem examination can provide information about the illness or other cause of your relatives death. An examination will only be carried out with the permission of the next of kin, unless the Coroner has ordered it (see below). Post mortem examinations can provide information about illness and health that would not be discovered in any other way and help you to understand why your relative died. Much of what we know about illness today came from such examinations. They 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. Identify complications or side-effects of treatments and drugs.
Sometimes families 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. Unfortunately it is possible that a post mortem examination will not always provide a reason for the death.
A post mortem examination ordered by the Coroner

A Coroner does not need the familys consent to order a post mortem examination to be done or to retain organs or tissue samples from it for further investigation. There are three main reasons why a death is referred to the Coroner and a post mortem is required by law 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 industrial disease, accident or unusual circumstances (which would include deaths following a medical procedure such as surgery).
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You can still donate tissue or organs for medical research following a Coroners post mortem examination, if you sign a consent form for this and with the agreement of the Coroner.
Different options
Full post mortem examination. Limited post mortem examination. No post mortem examination.
If you do not want to agree to a full post mortem examination, you might consider a limited examination. The doctor or other health professional who discusses the post mortem with you will be able to explain what the options are. Usually it means that only certain parts of the body are examined. Blocks and slides will be made from tissue samples in the same way as for a full post mortem examination. Sometimes such examinations can be very useful. It is possible that something important may be missed, or you may wish the examination to be limited to such an extent that the procedure is not worthwhile. In such circumstances, the person explaining the procedure will discuss the limitations and implications with you. However you may not wish to have a post mortem carried out on your relative and you should not feel under any pressure to do so against your wishes or what you know to be the wishes of your deceased relative.
When is a post mortem examination done?

Post mortem examinations are usually carried out within 12 working days of death. They take place in the mortuary. If because of your religion the funeral must take place within 24 hours, please let us know; we will try to do the post mortem examination within this time.
About a post mortem examination

The pathologist, working to standards set by the Royal College of Pathologists, will make incisions (cuts) in the body to remove and examine the major internal organs and will take various samples of tissue and fluid (such as blood) for later inspection in detail. Examination of the brain involves an incision across the head within the hairline. Sometimes it becomes essential to retain an organ such as brain or heart for a further detailed examination. However this will only be done if you have agreed beforehand. The samples of tissue taken for testing are usually kept as part of your relatives medical records 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.
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Tissue samples, blocks and slides

Although some information can be obtained from looking directly at organs in a post mortem examination, often the only way to understand properly what has happened is to look at part of an organ with a microscope. Small pieces of tissue are removed and placed in plastic containers (cassettes). These samples are usually less than 1.5 x 1.5cm in size (less than the size of a postage stamp) and up to 5 mm thick (often samples from the brain may be larger: about 2 x 2cms). The tissue is chemically treated to remove water, which is replaced with wax. These tissue blocks become hard, so that very thin sections can be cut from them. These sections are ten times thinner than a human hair. 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 securely in hospitals or research laboratories. Slides are usually stored for 10 years and wax blocks indefinitely as part of your relatives medical records.
Ways of examining tissue improve each year. In cases of genetic disorders, looking back to the tissues of deceased family members may help to make a diagnosis in other living members of the family so that they then receive the correct treatment. If you give your permission, these tissue blocks and slides can also be used in research, which may benefit other patients 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. Special committees must approve any research, to make sure it is ethical, and that valid consent has been given. Tissue must not be used for research without your agreement.
What is residual tissue?

After the blocks have been prepared the hospital needs to know how you want any unused or residual tissue to be disposed of or returned to you.
X-rays and other images
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Often the pathologist will take x-rays or other images (including photographs) of part of the body or of an organ during the examination, to be studied again later. These images are usually kept indefinitely as part of the medical records. They may also be used for teaching, training, audit or research, in which case any information which would allow your relative to be identified will be removed. If you object to images being used in this way, you must say so.
Organ retention/disposal
Some tests may take several days or weeks. Hospital staff can advise if this is likely, and how long tests may take. You may wish to have the funeral during this time. The consent form asks you about four options: You can ask for any organs and tissues that have been retained to be returned to the funeral director once the tests are complete, and you will then need to arrange for a separate cremation or burial service for these. Costs for the re-interment or cremation will be your own responsibility. You can choose to delay the funeral so that organs and tissue may be returned to the body for burial or cremation. But please note that it is not possible to place all the organs back into their original position in the body. You can choose to donate tissue samples or organs from your relatives body for use in medical education or research. If you have not donated the organs or tissue or asked for them to be returned, the hospital will dispose of them in a lawful way. This is by incineration.
Any tissue, blocks and slides, and photographs, x-rays or other images taken will usually be kept with the medical records. Alternatively, except where the Coroner has ordered the examination, they may be returned, if you ask for this to happen.
Your relatives body after the post mortem examination

After the post mortem examination the mortuary staff will prepare the body for you to see again, if you wish, and for the undertaker to prepare it for the funeral. We want to assure you that the body of your loved one is treated with respect and dignity. Evidence of the post mortem examination is not usually visible when the body is dressed.
The results of the post mortem examination

A copy of the post mortem report will be sent to your relatives Consultant Clinician and Family Doctor (GP). If you want one, you can be given an appointment time to discuss the findings of the post mortem with the GP or doctor in charge of your relatives care at the hospital. This will be a minimum of six weeks later, after all the tests are complete, but in some cases considerably
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longer. Where your relative has asked prior to death for confidentiality of his/her medical reports this will also apply to the post mortem report.
The consent form

Unless it has been ordered by the Coroner, the doctors need to get consent before they can carry out the post mortem examination. A written record of the decision makes it clear to everyone what has and has not been agreed to. Copies will be placed in your relatives medical record, given to the pathologist and to you. If you change your mind before the post mortem examination has taken place you can withdraw your consent even after signing. The hospital staff will tell you how much time you have in which to do this.
Who can consent?

Before their death an adult can consent to a post mortem examination or they can identify a nominated representative who has the authority to make decisions for them before and/or after death. If your relative has not made their wishes known or nominated someone to make these decisions it is for the next of kin to give their consent. Next of kin are ranked in order of authorisation as: 1. 2. 3. 4. 5. 6. 7. Husband, wife or partner Parent or child Full brother or sister Children of full brother or sister Stepmother or stepfather Half brother or half sister Friend of long standing
The decision of the highest ranking next of kin has the authority to consent. Where relatives of equal ranking are in disagreement the hospital is unlikely to agree to a post mortem examination.
Medical education and research

The consent form asks you about whether you want to donate tissue, organs, blocks or images for use in medical education or ethically approved research. Medical education: includes teaching, training and educating all types of doctors, nurses and health professionals. Research: examining tissue, organs or blocks 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
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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. Medical audit means checking the quality of care, procedures and tests. Doctors training to be Pathologists need to observe and learn about post mortem examinations, and to discuss the procedure and findings with an experienced Pathologist. 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 population. If you donate organs or tissue, they will not usually be returned to you. After they have been used, they may eventually be disposed of in a lawful and ethical way.
What should I know before deciding?

The 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. They may recommend a particular option, but it is important that you understand and come to your own decision. They will ask you to say whether you have understood the information you have been given. If you are not sure, say so.
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 about what will happen during a post mortem examination. If you would rather not know about certain aspects, please say so. If, on the other hand, you would like more detail or would like to discuss the matter with another health professional please ask.
Key things to remember

Ask as many questions as you like and if you would rather not hear details that you find upsetting, just say so. Hospital staff are aware that this is not an easy subject for you to deal with. They are able to give you as much help to make the decision that is right for you and your family.
What some of the words mean
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Archiving Archiving is the long-term preservation of tissue or organs. Archives are important and useful because: The tissue/organ can be examined if new techniques or knowledge become available. This gives a clearer explanation of an illness. The education and training of medical students and doctors is easier if they can see for themselves what happens inside the body in disease. Research using archived tissues and organs can help in the diagnosis and treatment of future patients.
Tissue and Organ Banks Rare diseases can be investigated properly only when a number of cases have been studied. This means that tissues/organs from post mortems may be stored safely and securely until enough cases have been collected and then the research can begin. Tissues/organs are only stored with the family's permission. Body Parts Body parts are groups of organs, a limb or part of a limb. Cassette A small plastic container, usually measuring 2.5 x 1.5 x 0.5 cms, in which tissue samples are placed at post mortem. Each cassette is marked with the patients identifying number. The tissue samples remain in the cassettes from the time of the post mortem, through processing and slide cutting, and are stored in them. Consented post mortem examination A post mortem examination carried out with the agreement of relatives, not one required by law. Coroner The Coroner is an independent lawyer who investigates deaths due to unnatural, suspicious or unknown causes. The Coroner may hold an inquest in a small number of cases. Coroner's post mortem examination This is a post mortem examination that has been asked for by a Coroner. The agreement of relatives is not needed as the post mortem is required by law but the tissue or organs cannot be used for other purposes without your consent and the agreement of the Coroner.
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Death Certificate A death certificate is required to allow the death of the person to be registered, along with the cause of death. It lets the Registrar of Deaths issue the form allowing the funeral to take place. Fixation Before organs or tissues can be examined in detail, they have to be hardened by soaking them in a chemical, usually formaldehyde. This is known as fixation or fixing. The complete process may take several weeks, especially for the brain. Full post mortem examination The full post mortem involves examination of all the organs in the chest and abdomen, and the brain. Inquest A Coroner may hold an inquest into any death that is reported to him. This may be when a death is known or suspected to be due to anything other than natural disease. Sometimes it is held in the presence of a jury. An inquest considers all the evidence about the death and gives relatives or their legal representative an opportunity to question witnesses. Incision An incision is a cut in the skin to allow the internal organs to be examined. It is made in the same way as for a surgical operation. The incision is closed with stitches at the end of the post mortem and may then be bandaged. Limited post mortem examination This is a post mortem where only some organs are examined. This may only provide a part of the possible information about the illness. Microscope This is a machine with special lenses that allows the pathologist to look at the tissue on a glass slide, and see the cells magnified 400 times. Changes in the tissue that are not normal indicate the type of disease. Mortuary The mortuary is a group of rooms where bodies are kept in refrigerators before being collected by the funeral directors. The mortuary also includes the post mortem room where the examinations are performed.
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Organ(s) The body contains many organs such as the brain, heart, kidneys, lungs and liver. Each organ carries out different functions. The organs are connected in the body by nerves, blood vessels and fibres. Pathologist A pathologist is a medical doctor trained in the diagnosis and study of disease. Pathologists who perform post mortem examinations usually work in hospitals, and are also involved in the diagnosis of disease in live patients. Some pathologists have further specialist training: Neuropathologists study diseases of the brain. Paediatric pathologists study diseases of babies and children. Forensic pathologists study sudden, suspicious or unnatural deaths.
Pathologists work to standards laid down by the Royal College of Pathologists. Regional centre for specialist post mortem examination Sometimes it is necessary for a body to be moved to another hospital for the post mortem examination where there are special facilities and pathologists skilled in dealing with particular cases (for example, deaths in infancy and childhood and diseases of the brain). Tissue Organs are made up of tissue, which is a collection of cells that give organs their special functions. For example, the heart contains muscle tissue composed of cells that contract to pump the blood.
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CONSENT FORM FOR A HOSPITAL POST MORTEM EXAMINATION OF AN ADULT1
Department of Health, Social Services and Public Safety Consent form for a Hospital Post Mortem examination of an adult
1.
PATIENT DETAILS
NAME: DOB: HOSPITAL: WARD: CONSULTANT: GP: M/F: UNIT NO:
2.
INFORMATION
This form asks about consent for a post mortem examination to be performed on the person named above. Please read through it carefully with the doctor and tick the boxes that show your decisions. I confirm that I have read and understood the booklet: Information for Relatives: Hospital Post Mortem Examination of an Adult. I confirm that any questions about post mortem examinations that I have asked have been answered to my satisfaction and understanding.
3.
CONSENT
A post mortem examination can be full or limited in extent and the hospital staff will explain this choice and what it means to you. I consent to a full post mortem examination being carried out on the body of the above and am not aware that he/she objected to this. I understand that the reason for the examination is to further explain the cause of death and study the effects of disease and treatment. I consent to a limited post mortem examination being carried out on the body of the above and am not aware that he/she objected to this. I understand that this may give only some of the information about the cause of death and effects of treatment. I wish the examination to be limited to: The Head The Chest The Abdomen
Other (please specify)
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I consent to the attendance at the post mortem examination of healthcare staff and students for the purposes of training and education. I do not consent to a post mortem examination being carried out on the body of the above and I understand that this may limit the information regarding the cause of death.
4.
TISSUE SAMPLES
As part of the post mortem examination, tissue samples mostly in the form of blocks and slides and small amounts of body fluids will be taken and used to determine the diagnosis and extent of the disease. These samples can be valuable for medical education and ethically approved research and you can agree to them being retained by the hospital or university for such purposes. Alternatively you may want them to be kept only as part of your relatives medical records or returned to you. I understand that post mortem examination involves the taking, examining and keeping of small samples of tissue and body fluids to investigate the cause of death, study the effects of the disease and treatment and as a medical record. I understand that glass slides are usually disposed of after 10 years but that wax blocks will be kept indefinitely. I consent to these samples being used by the hospital or university for education/research. I want these samples to be kept only as part of the medical records. I want the blocks and slides to be returned to me for burial/cremation after the post mortem report is completed2. Small amounts of tissue may be left after making the blocks and slides. Please indicate your preference for their disposal. Hospital disposal Return to me/funeral director for disposal
5.
GENETIC TESTING OF TISSUE SAMPLES

In some cases analysis of chromosomes and other genetic tests are important to aid diagnosis. Study of stored samples may also help future understanding of disease. I consent to genetic tests being done for diagnostic purposes. I consent to these samples being used by the hospital or university for education/research. I want these samples to be kept only as part of the medical records.
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I do not consent to genetic tests being done.
6.
IMAGES
Photographs, X-rays or other images may be taken during a post mortem investigation. After this they are kept as part of the medical record in keeping with current law. Images (with identification removed) can be valuable for medical teaching and ethically approved research. I consent to the images being used by the hospital or university for education/research. I want the images to be kept only as part of the medical records. I do not consent to images being taken.
7.
ORGAN RETENTION
As part of the post mortem examination it may be important for whole organs to be taken for further examination as they can provide a more detailed understanding of the disease. I consent to organs being taken for further examination. I consent to organs being taken for further examination except those listed below:
I do not consent to any organs being taken for further examination.
8.
FURTHER USE OR DISPOSAL OF RETAINED ORGANS

Where organs have been retained, please indicate your preference for their further use or disposal. I want the hospital to dispose of the organs in a lawful and respectful way following completion of the post mortem report. I want the organs to be returned to me following completion of the post mortem report. I will arrange for their lawful disposal2. I want the organs to be reunited with the body before it is released. I understand that this will significantly delay the funeral. I consent to the organs being used by the hospital or university for education/research. Other requests or conditions you would like to make:
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9.
CONFIRMATION OR REFUSAL OF CONSENT

This section is signed to confirm that the form has been read and completed by the person(s) named below and witnessed by the member of staff as detailed. Name of relative(s) giving consent (print):
Relationship(s) to the deceased3:
Signature(s):
Date:
Name of doctor taking consent (print name):
Job title/grade:
I confirm that I have: explained the procedures and reasons for them. explained the terms tissue samples, blocks and slides. checked for objections about removal or retention of tissue and organs as indicated. discussed special requests/conditions.
Signature: Date:
1. 2. 3.
The form applies to adults of 18 years of age and above at time of death. Later burial of organs, residual tissue and tissue blocks is done at relatives expense. The wishes of the patient, if known, take precedence over the wishes of relatives. A nominated representative may have been appointed by the patient to make decisions on their behalf. If neither apply then next of kin have the authority to consent to post mortem examination. These are ranked in authority: 1. husband/wife/partner 2. parent or child 3. brother/sister 4. nephew/niece 5. Stepmother/father 6. half-brother/sister 7. friend of long standing.
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CHAPTER 4 INFORMATION FOR PARENTS HOSPITAL POST MORTEM EXAMINATION OF A CHILD
Information about a childs Post Mortem Examination

This leaflet has been written with the help of other bereaved parents. It gives information about a hospital post mortem examination and how it might be valuable to you in the future. Your consent is required for the post mortem to take place. Your childs doctors or nurses will answer any questions you may have.
You may contact:
between
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A post mortem is the examination of a body after death. It is also called an autopsy. Post mortem examinations are carried out by pathologists. Pathologists are doctors who specialise in the diagnosis of disease and the identification of the cause of disease.
The importance of a post mortem

A post mortem examination can provide information which will help you and the doctors understand why your child died. An examination can only be carried out with the permission of the parents or legal guardians, unless the Coroner has ordered it. Post mortem examinations can provide information about illness and health that would not be discovered in any other way. Much of what we know about illness today came from such examinations. They help to: Identify the nature of the illness, if this is not already known. Identify other conditions that may not have been diagnosed. Identify complications or side-effects of treatments and drugs. Help plan future pregnancies and care in pregnancies. Diagnose and treat conditions in your other children or future children. Provide information that may benefit other families in the future who suffer from similar problems.
Unfortunately, it is possible that a post mortem examination may not provide a reason for the death.
Different options
The doctor or other health professional who discusses the post mortem examination with you will be able to explain what these are: Full post mortem examination Limited post mortem examination No post mortem examination
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If you do not agree to a full post mortem examination, you might consider a limited examination. This means that only certain parts of your child's body are examined. Tissue samples will be taken from the organs you consented to be examined. From these, blocks and slides will be made in the same way as for a full post mortem examination. A limited examination is likely to provide only limited information about your child's cause of death or illness. Because of this, the doctor may advise you that it would be better not to proceed with a limited post mortem examination. However, you may chose not to have a post mortem examination carried out on your child.
Timing of a post mortem examination

Post mortem examinations are usually performed 1-2 working days after death, and are carried out in the mortuary.

The pathologist works to standards set by the Royal College of Pathologists. During the post mortem, a very careful external examination of your child is carried out. The pathologist then makes an incision (cut) down the front of the body and the internal organs (or those agreed beforehand with you) are removed and examined. All organs are returned to the body afterwards. Occasionally it is important to retain whole organs for further examination, as this can provide more detailed understanding of the disease. This can only be done with your consent. If the brain needs to be examined, an incision is made in the back of the head around the hairline. It takes six to eight weeks to properly examine the brain because special processes (fixation) need to be carried out. Small samples of tissue will be taken from each organ for examination under the microscope. Sometimes tissue samples or fluid (such as blood) will be taken for further tests such as looking at the childs chromosomes or genes or to search for infections due to bacteria or viruses. The samples of tissue taken for testing are usually kept as part of your child's medical records in case they are needed to answer further questions about the cause of death. They may also help answer questions regarding illnesses of other family members in the future (see section below on tissue samples, blocks and slides). In some cases the post mortem findings suggest a gene abnormality for which genetic testing is not available at present. This may become available in the future and so it may be helpful to store a small sample of tissue or
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extracted DNA for possible future investigation. This will not be done without your consent.

Although some information can be obtained from looking directly at organs in a post mortem examination, often the only way to understand properly what has happened is to look at part of an organ under the microscope. Small samples of tissue are removed from the organs and placed in little plastic containers (cassettes). These samples measure approximately 1.5 x 1.5 cm (less than the size of a postage stamp) and up to 5mm thick. Samples from tiny organs are much smaller and those from the brain are larger, usually 2 x 2 cms. The tissue is chemically treated to remove water, which is replaced with wax. These tissue blocks become hard. Very thin slices (sections), a tenth of the thickness of a human hair, are then cut off the surface. The sections are placed on glass slides so that they can be examined under a microscope. More than one slide can be cut from one block. These techniques are the same as those used to examine tissue from living patients.
The wax blocks and slides are kept by the hospital as part of the childs medical records (blocks indefinitely and slides for approximately 10 years). Blocks and slides are kept in special cabinets designed for this purpose, which are kept securely in hospitals or research laboratories. Methods of examining tissues are improving each year, and new tests become available. In the case of genetic disorders, looking back to stored tissue, blocks or slides of deceased family members may help to make a diagnosis in living members of the family. They can then receive the appropriate treatment. If you give your consent, your childs tissue blocks and slides can also be used in medical research, which may benefit other patients in the future. When a new disease or health problem emerges, examination of tissue samples on a wide scale may provide clues about how and why the disease emerged - and how this may be treated.
Residual tissue
After the blocks have been prepared there may be small amounts of unused or residual tissue remaining. The hospital will need to know how you want this tissue to be disposed of or returned to you.
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Often the pathologist will take X-rays and photographs of the body or an organ during the examination. These images are kept as part of your child's medical records and can be reexamined if new knowledge becomes available.
If you have consented for an organ to be retained, the consent form gives you several options. You can choose: For the organs to be used in medical education, or research, or both. For the organs to be returned to you, through your funeral director, once tests are completed. You will then need to arrange a separate cremation or burial service for these. For the organs to be returned to your child's body for burial or cremation, but this will significantly delay the funeral. For the hospital to arrange lawful disposal of the organs through cremation, incineration or burial. Staff will let you know what options are available in the hospital.
Further use of blocks, slides, photographs, x-rays

Tissue blocks and slides, photographs, X-rays and other images are part of your childs medical records. You can choose: For the hospital to keep these only for use in your childs records. To give these for use in medical education, or research, or both (you may wish only to give some of them). For the blocks and slides to be returned to you for cremation or burial. This means it will not be possible to have the case reviewed or seek a second opinion at a later date.
Your childs body after the post mortem examination

When the post mortem examination is over, you will be able to see and hold your child again in a private room in the mortuary. The incision on the body from the post mortem is bandaged once the post
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mortem examination is finished and is not seen when your child has been dressed. The incision on the head will normally be covered by hair, but may sometimes be visible.
Funeral arrangements
You can contact the undertaker about funeral arrangements either before or after the post mortem examination has taken place.

The post mortem report will be sent to your child's hospital consultant and general practitioner. This takes a minimum of 6 weeks to complete and may be considerably longer in some cases. A letter will also be sent to you informing you that the doctors have received the report. You can arrange an appointment with them to discuss the findings, if you wish.
The consent form

Unless it has been ordered by the Coroner, the doctors need the consent of parents or those having parental authority before they can carry out the post mortem examination. The form is a written record of your decision and makes clear to everyone what you have, and have not, agreed to. If you change your mind before the post mortem examination has taken place you can withdraw your consent, even after signing. You will be given a copy of the consent form, a copy will be filed in your childs hospital notes and a copy will be sent to the pathologist. This ensures that everyone knows your decisions.

The consent form asks you about whether you want to give blocks and slides, images, genetic samples or organs for use in medical education and/or research. Medical education: this includes teaching, training and educating all types of doctors, nurses and health professionals. Research: examining tissue, organs and images 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, and to teach specialist knowledge. Sharing information between doctors is important in maintaining high standards of care.
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Doctors training to be pathologists need to watch and learn from post mortem examinations, and discuss the findings with an experienced pathologist. Sharing information between doctors and hospitals is also very important for public health surveillance. This can make sure that infectious diseases do not spread throughout the population. A separate copy of the consent form will be kept, if you agree that blocks and slides, images, genetic samples or organs may be used for medical education and research.
Questions
You can ask as many questions as you like. You may also wish to discuss the decision about a post mortem examination with other family members. People vary as to how much information they want about what will happen during a post mortem examination. If you would like more details or want to discuss the matter with another health professional, please ask.
Before giving your consent

It is important that you understand all the information and come to your own decision. Hospital staff are available to give further help, if you wish. They can also discuss your options. They will ask you to say whether you have understood the information you have been given. If you are not sure, say so.

Archiving Archiving is the long-term preservation of tissue or organs. Archives are important and useful because: The tissue/organ can be examined if new techniques or knowledge become available. This gives a clearer explanation of a childs illness. The education and training of medical students and doctors is easier if they can see for themselves what happens inside the body in disease. Research using archived tissues and organs can help in the diagnosis and treatment of future patients.
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Tissue and Organ Banks Rare diseases can be investigated properly only when a number of cases have been studied. This means that tissues/organs from post mortem examinations may be stored safely and securely until enough cases have been collected and then the research can begin. Tissues/organs are only stored with the family's permission. Body Parts Body parts are groups of organs, a limb or part of a limb. Cassette A small plastic container, usually measuring 2.5 x 1.5 x 0.5 cms, in which tissue samples are placed at post mortem examination. Each cassette is marked with the patients identifying number. The tissue samples remain in the cassettes from the time of the post mortem examination, through processing and slide cutting, and are stored in them. Consented post mortem examination A consented post mortem examination carried out with the agreement of relatives, not one required by law. Coroner The Coroner is an independent lawyer who investigates deaths due to unnatural, suspicious or unknown causes. The Coroner may hold an inquest in a small number of cases. Coroner's post mortem examination This is a post mortem examination that has been asked for by a Coroner. The agreement of relatives is not needed as the examination is required by law but the tissue or organs cannot be used for other purposes without your consent and the agreement of the Coroner. Death Certificate A death certificate is required to allow the death of the person to be registered, along with the cause of death. It lets the Registrar of Deaths issue the form allowing the funeral to take place. Fixation Before organs or tissues can be examined in detail, they have to be hardened by soaking them in a chemical, usually formaldehyde. This is known as fixation or fixing. The complete process may take several weeks, especially for the brain.
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Full post mortem examination The full post mortem involves examination of all the organs in the chest and abdomen, and the brain. Inquest A Coroner may hold an inquest into any death that is reported to him. This may be when a death is known or suspected to be due to anything other than natural disease. Sometimes it is held in the presence of a jury. An inquest considers all the evidence about the death and gives relatives or their legal representative an opportunity to question witnesses. Incision An incision is a cut in the skin to allow the internal organs to be examined. It is made in the same way as for a surgical operation. The incision is closed with stitches at the end of the post mortem examination and may then be bandaged. Limited post mortem examination This is a post mortem where only some organs are examined. This may only provide a part of the possible information about the illness. Microscope This is a machine with special lenses that allows the pathologist to look at the tissue on a glass slide and see the cells magnified. Changes in the tissue that are not normal indicate the type of disease. Mortuary The mortuary is a group of rooms where bodies are kept in refrigerators before being collected by the funeral directors. The mortuary also includes the post mortem room where the examinations are performed. Organ(s) The body contains many organs such as the brain, heart, kidneys, lungs and liver. Each organ carries out different functions. The organs are connected in the body by nerves, blood vessels and fibres. Pathologist A pathologist is a medical doctor trained in the diagnosis and study of disease. Pathologists who perform post mortem examinations usually work in hospitals, and are also involved in the diagnosis of disease in live patients. Some pathologists have further specialist training: Neuropathologists study diseases of the brain.
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Paediatric pathologists study diseases of babies and children. Forensic pathologists study sudden, suspicious or unnatural deaths.
Pathologists work to standards laid down by the Royal College of Pathologists. Regional centre for specialist post mortem examination Sometimes it is necessary for a body to be moved to another hospital for the post mortem examination where there are special facilities and pathologists skilled in dealing with particular cases (for example deaths in infancy and childhood and diseases of the brain). Tissue Organs are made up of tissue, which is a collection of cells that give organs their special functions. For example, the heart contains muscle tissue composed of cells that contract to pump the blood.
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CONSENT FORM FOR A HOSPITAL POST MORTEM EXAMINATION OF A CHILD1
Department of Health, Social Services and Public Safety Consent form for a Hospital Post Mortem examination of a child
1.
CHILDS DETAILS
2.
INFORMATION
This form asks about consent for a post mortem examination to be performed on the person named above. Please read through it carefully with the doctor and tick the boxes that show your decisions. I confirm that I have read and understood the booklet: Information for Parents: Hospital Post Mortem Examination of a Child. I confirm that any questions about post mortem examinations that I have asked have been answered to my satisfaction and understanding.
3.
CONSENT
A post mortem examination can be full or limited in extent and the hospital staff will explain this choice and what it means to you. I consent to a full post mortem examination being carried out on the body of the above and am not aware that he/she objected to this. I understand that the reason for the examination is to further explain the cause of death and study the effects of disease and treatment. I consent to a limited post mortem examination being carried out on the body of the above and am not aware that he/she objected to this. I understand that this may give only some of the information about the cause of death and effects of treatment. I wish the examination to be limited to: The Head The Chest The Abdomen
Other (please specify)
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I consent to the attendance at the post mortem examination of healthcare staff and students for the purposes of training and education. I do not consent to a post mortem examination being carried out on the body of the above and I understand that this may limit the information regarding the cause of death.
4.
TISSUE SAMPLES
As part of the post mortem examination, tissue samples mostly in the form of blocks and slides and small amounts of body fluids will be taken and used to determine the diagnosis and extent of the disease. These samples can be valuable for medical education and ethically approved research and you can agree to them being retained by the hospital or university for such purposes. Alternatively you may want them to be kept only as part of your childs medical records or returned to you. I understand that post mortem examination involves the taking, examining and keeping of small samples of tissue and body fluids to investigate the cause of death, study the effects of the disease and treatment and as a medical record. I understand that glass slides are usually disposed of after 10 years but that wax blocks will be kept indefinitely. I consent to these samples being used by the hospital or university for education/research. I want these samples to be kept only as part of the medical records. I want the blocks and slides to be returned to me for burial/cremation after the post mortem report is completed2. Small amounts of tissue may be left after making the blocks and slides. Please indicate your preference for their disposal. Hospital disposal Return to me/funeral director for disposal
5.

In some cases analysis of chromosomes and other genetic tests are important to aid diagnosis. Study of stored samples may also help future understanding of disease. I consent to genetic tests being done for diagnostic purposes. I consent to these samples being used by the hospital or university for education/research. I want these samples to be kept only as part of the medical records.
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I do not consent to genetic tests being done.
6.
IMAGES
Photographs, X-rays or other images may be taken during a post mortem investigation. After this they are kept as part of the medical record in keeping with current law. Images (with identification removed) can be valuable for medical teaching and ethically approved research. I consent to the images being used by the hospital or university for education/research. I want the images to be kept only as part of the medical records. I do not consent to images being taken
7.
ORGAN RETENTION
As part of the post mortem examination it may be important for whole organs to be taken for further examination as they can provide a more detailed understanding of the disease. I consent to organs being taken for further examination. I consent to organs being taken for further examination except those listed below:
8.

Where organs have been retained, please indicate your preference for their further use or disposal. I want the hospital to dispose of the organs in a lawful and respectful way following completion of the post mortem report. I want the organs to be returned to me following completion of the post mortem report. I will arrange for their lawful disposal2. I want the organs to be reunited with the body before it is released. I understand that this will significantly delay the funeral. I consent to the organs being used by the hospital or university for education/research. Other requests or conditions you would like to make:
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9.

This section is signed to confirm that the form has been read and completed by the person(s) named below and witnessed by the member of staff as detailed. Name of relative(s) giving consent (print):
Relationship(s) to the child3:
Signature(s):
Date:
Job title/grade:
I confirm that I have: explained the procedures and reasons for them. explained the terms tissue samples, blocks and slides. checked for objections about removal or retention of tissue and organs as indicated. discussed special requests/conditions.
Signature: Date:
1. 2. 3.
This form applies to children over 28 days old but under 18 years at the time of death. Later burial of organs, residual tissue and blocks is done at parents expense. Only parents or those with legal parental authority can consent to the post mortem examination of a child.
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CHAPTER 5 INFORMATION FOR PARENTS HOSPITAL POST MORTEM EXAMINATION OF A BABY Information about a baby's Post Mortem examination
This leaflet has been written with the help of other bereaved parents. It gives information about a hospital post mortem examination and how it might be valuable to you in the future. Your consent is required for the post mortem examination to take place. Your, or your babys doctors or nurses will answer any questions you may have.
You may contact:
between
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A post mortem examination can provide information which will help you and the doctors understand why your baby died. An examination can only be carried out with the permission of the parents or legal guardians, unless the Coroner has ordered it. Post mortem examinations can provide information about illness and health that would not be discovered in any other way. Much of what we know about illness today came from such examinations. They help to: Identify the nature of a disease, if this is not already known. Identify other conditions that may not have been diagnosed. Identify congenital abnormalities such as heart or kidney defects. Help plan future pregnancies and care in pregnancies. Diagnose and treat conditions in your other children or future children. Provide information that may benefit other families in the future who suffer from similar problems.
Unfortunately, it is possible that a post mortem examination may not provide a reason for the death.
Different options
The doctor or other health professional who discusses the post mortem examination with you will be able to explain what these are: Full post mortem examination. Limited post mortem examination. No post mortem examination.
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If you do not agree to a full post mortem examination, you might consider a limited examination. This means that only certain parts of your baby's body are examined. It may however only provide limited information about your baby's cause of death or illness. Because of this, the doctor may advise you that it would be better not to proceed with a limited post mortem examination. If you do not agree to a full or limited post mortem examination, you may choose to consent for an external examination only. This means that the organs are not examined as the body is not opened. This will only provide limited information. Tissue samples will be taken from the organs you consented to be examined. From these, blocks and slides will be made in the same way as for a full post mortem examination. However, you may chose not to have a post mortem examination carried out on your baby.
Timing of a post mortem examination

Post mortem examinations are usually performed 1-2 working days after death, and are carried out in the mortuary.

The pathologist works to standards set by the Royal College of Pathologists. Sometimes it is necessary for a body to be moved to another hospital for the post mortem examination where there are special facilities and pathologists skilled in dealing with particular cases (for example deaths in infancy and babyhood and diseases of the brain). During the post mortem, a very careful external examination of your baby is carried out. The pathologist then makes an incision (cut) down the front of the body and the internal organs (or those agreed beforehand with you) are removed and examined. All organs are returned to the body afterwards. Occasionally, it is important to retain whole organs for further examination, as this can provide more detailed understanding of the disease. This can only be done with your consent. If the brain needs to be examined, an incision is made in the back of the head around the hairline. It takes six to eight weeks to properly examine the brain because special processes (fixation) need to be carried out. Small samples of tissue will be taken from each organ for examination under the microscope. Sometimes tissue samples or fluid (such as blood) will be taken for further tests such as looking at the babys chromosomes or genes or to search for infections due to bacteria or viruses.
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The samples of tissue taken for testing are usually kept as part of your baby's medical records in case they are needed to answer further questions about the cause of death. They may also help answer questions regarding illnesses of other family members in the future (see section below on tissue samples, blocks and slides). In some cases the post mortem examination findings suggest a gene abnormality for which genetic testing is not available at present. This may become available in the future and so it may be helpful to store a small sample of tissue or extracted DNA for possible future investigation. This will not be done without your consent.

Although some information can be obtained from looking directly at organs in a post mortem examination, often the only way to understand properly what has happened is to look at part of an organ under the microscope. Small samples of tissue are removed from the organs and placed in little plastic containers (cassettes). These samples measure approximately 1.5 x 1.5 cm (less than the size of a postage stamp) and up to 5mm thick. Samples from tiny organs are much smaller and those from the brain are larger, usually 2 x 2 cms. The tissue is chemically treated to remove water, which is replaced with wax. These tissue blocks become hard. Very thin slices (sections), a tenth of the thickness of a human hair, are then cut off the surface. The sections are placed on glass slides so that they can be examined under a microscope. More than one slide can be cut from one block. These techniques are the same as those used to examine tissue from living patients.
The wax blocks and slides are kept by the hospital as part of the babys medical records. Blocks are kept indefinitely and slides are kept for approximately 10 years. Blocks and slides are kept in special cabinets designed for this purpose, which are kept securely in hospitals or research laboratories. Methods of examining tissues are improving each year, and new tests become available. In the case of genetic disorders, looking back to stored tissue, blocks or slides of deceased family members may help to make a diagnosis in living members of the family. They can then receive the appropriate treatment. If you give your consent, your babys tissue blocks and slides can also be used in medical research, which may benefit other patients in the future. When a new disease or health problem emerges, examination of tissue samples on a wide
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scale may provide clues about how and why the disease emerged - and how this may be treated.
Residual tissue
After the blocks have been prepared there may be small amounts of unused or residual tissue remaining. The hospital will need to know how you want this tissue to be disposed of or returned to you.

Often the pathologist will take X-rays and photographs of the body or an organ during the examination. These images are kept as part of your baby's medical records and can be re-examined if new knowledge becomes available.
If you have consented for an organ to be retained, the consent form gives you several options. You can choose: For the organs to be used in medical education, or research, or both. For the organs to be returned to you, through your funeral director, once tests are completed. You will then need to arrange a separate cremation or burial service for these. For the organs to be returned to your baby's body for burial or cremation, but this will significantly delay the funeral. For the hospital to arrange disposal of the organs through cremation, incineration or burial. Staff will let you know what options are available in the hospital.

Tissue blocks and slides, photographs, X-rays and other images are part of your babys medical records. You can choose: For the hospital to keep these only for use in your babys records. To give these for use in medical education, or research, or both. You may wish only to give some of them.
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For the blocks and slides to be returned to you for cremation or burial. This means it will not be possible to have the case reviewed or seek a second opinion at a later date.
Your babys body after the post mortem examination

When the post mortem examination is over, you will be able to see and hold your baby again in a private room in the mortuary. The incision on the body from the post mortem examination is bandaged once the post mortem is finished and is not seen when your baby has been dressed. A little hat can be used to cover the mark over the back of the head.
You can contact the undertaker about funeral arrangements either before or after the post mortem examination has taken place. Alternatively you may request the hospital to make arrangements for the burial or cremation.

Following a miscarriage or stillbirth the post mortem report will be sent to your hospital consultant and general practitioner. Following a babys death before the 28th day of life the post mortem report will be sent to your babys hospital consultant and, if appropriate, their general practitioner. This takes a minimum of 6 weeks to complete and may be considerably longer in some cases. A letter will also be sent to you informing you that the doctors have received the report. You can arrange an appointment with them to discuss the findings, if you wish.
The consent form

Unless it has been ordered by the Coroner, the doctors need the consent of parents or those having parental authority before they can carry out the post mortem examination. The form is a written record of your decision and makes clear to everyone what you have, and have not, agreed to. If you change your mind before the post mortem examination has taken place you can withdraw your consent, even after signing. You will be given a copy of the consent form and a copy will be filed in your babys hospital notes. A copy will also be sent to the pathologist. This ensures that everyone knows your decisions.

The consent form asks you about whether you want to give blocks and slides, images, samples for genetic testing or organs for use in medical education and/or research.
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Medical education: this includes teaching, training and educating all types of doctors, nurses and health professionals. Research: examining tissue, organs and images 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 teach medical students and new doctors, to help experienced doctors continue to learn about new conditions or treatments, and 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 from post mortem examinations, and discuss the findings with an experienced pathologist. Sharing information between doctors and hospitals is also very important for public health surveillance. This can make sure that infectious diseases do not spread throughout the population. A separate copy of the consent form will be kept, if you agree that blocks and slides, images, samples for genetic testing or organs may be used for medical education and research.
Questions
You can ask as many questions as you like. You may also wish to discuss the decision about a post mortem examination with other family members. People vary as to how much information they want about what will happen during a post mortem examination. If you would like more details or want to discuss the matter with another health professional, please ask.
Before giving your consent

It is important that you understand all the information and come to your own decision. Hospital staff are available to give further help, if you wish. They can also discuss your options. They will ask you to say whether you have understood the information you have been given. If you are not sure, say so.
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Archiving Archiving is the long-term preservation of tissue or organs. Archives are important and useful because: The tissue/organ can be examined if new techniques or knowledge become available. The education and training of medical students and doctors is easier if they can see for themselves what happens inside the body in disease. Research using archived tissues and organs can help in the diagnosis and treatment of future patients.
Tissue and Organ Banks Rare diseases can be investigated properly only when a number of cases have been studied. This means that tissues/organs from post mortem examinations may be stored safely and securely until enough cases have been collected and then the research can begin. Tissues/organs are only stored with the family's permission. Body Parts Body parts are groups of organs, a limb or part of a limb. Cassette A small plastic container, usually measuring 2.5 x 1.5 x 0.5 cms, in which tissue samples are placed at post mortem examination. Each cassette is marked with the patients identifying number. The tissue samples remain in the cassettes from the time of the post mortem examination, through processing and slide cutting, and are stored in them. Consented post mortem examination A post mortem examination carried out with the agreement of relatives, not one required by law. Coroner The Coroner is an independent lawyer who investigates deaths due to unnatural, suspicious or unknown causes. The Coroner may hold an inquest in a small number of cases.
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Coroner's post mortem examination This is a post mortem examination that has been asked for by a Coroner. The agreement of relatives is not needed as the examination is required by law but the tissue or organs cannot be used for other purposes without your consent and the agreement of the Coroner. Death Certificate A death certificate is required to allow the death of the person to be registered, along with the cause of death. It lets the Registrar of Deaths issue the form allowing the funeral to take place. Fixation Before organs or tissues can be examined in detail, they have to be hardened by soaking them in a chemical, usually formaldehyde. This is known as fixation or fixing. The complete process may take several weeks, especially for the brain. Full post mortem examination The full post mortem involves examination of all the organs in the chest and abdomen, and the brain. Inquest A Coroner may hold an inquest into any death that is reported to him. This may be when a death is known or suspected to be due to anything other than natural disease. Sometimes it is held in the presence of a jury. An inquest considers all the evidence about the death and gives relatives or their legal representative an opportunity to question witnesses. Incision An incision is a cut in the skin to allow the internal organs to be examined. It is made in the same way as for a surgical operation. The incision is closed with stitches at the end of the post mortem examination and may then be bandaged. Limited post mortem examination This is a post mortem where only some organs are examined. This may only provide a part of the possible information about the illness. Microscope This is a machine with special lenses that allows the pathologist to look at the tissue on a glass slide, and see the cells magnified. Changes in the tissue that are not normal indicate the type of disease.
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Mortuary The mortuary is a group of rooms where bodies are kept in refrigerators before being collected by the funeral directors. The mortuary also includes the post mortem room where the examinations are performed. Organ(s) The body contains many organs such as the brain, heart, kidneys, lungs and liver. Each organ carries out different functions. The organs are connected in the body by nerves, blood vessels and fibres. Pathologist A pathologist is a medical doctor trained in the diagnosis and study of disease. Pathologists who perform post mortem examinations usually work in hospitals, and are also involved in the diagnosis of disease in live patients. Some pathologists have further specialist training: Neuropathologists study diseases of the brain. Paediatric pathologists study diseases of babies and children. Forensic pathologists study sudden, suspicious or unnatural deaths.
Pathologists work to standards laid down by the Royal College of Pathologists. Tissue Organs are made up of tissue, which is a collection of cells that give organs their special functions. For example, the heart contains muscle tissue composed of cells that contract to pump the blood.
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CONSENT FORM FOR A HOSPITAL POST MORTEM EXAMINATION OF A BABY
Department of Health, Social Services and Public Safety Consent form for a Hospital Post Mortem examination of a Baby1
1.
BABYS DETAILS
NAME: DOB: MOTHERS NAME: HOSPITAL: WARD: CONSULTANT: GP: GESTATIONAL AGE: FATHERS NAME: UNIT NO: M/F:
2.
INFORMATION
This form asks about consent for a post mortem examination on your baby. Please read through it carefully with the doctor and tick the boxes that show your decisions. I confirm that I have read and understood the booklet: Information for Parents: Hospital Post Mortem Examination of a Baby. I confirm that any questions about post mortem examinations that I have asked have been answered to my satisfaction and understanding.
3.
CONSENT
A post mortem examination on a baby can be full, limited in extent or external only. Hospital staff will explain these choices and what they mean. I consent to a full post mortem examination being carried out on my baby. I understand that the reason for the examination is to try and explain why my baby died. I consent to a limited post mortem examination being carried out on my baby. I understand that this may only give limited information. I wish the examination to be limited to: The Head The Chest The Abdomen
I consent for an external examination to be carried out on my baby. I understand this may only give very limited information. I consent to the attendance at the post mortem examination of healthcare staff and students for the purposes of training and education. I do not consent to a post mortem examination being carried out on my baby and I understand that this may limit the information regarding cause of death.
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4.
TISSUE SAMPLES
As part of the post mortem examination, tissue samples mostly in the form of blocks and slides and small amounts of body fluids will be taken and used to try and find out why your baby died. These samples are used to investigate the cause of death, study the effects of disease and treatment and as a medical record. They can be valuable for medical education and ethically approved research and you can agree to them being retained by the hospital or university for such purposes. Alternatively you may want them to be kept only as part of your babys medical records or returned to you. I understand that post mortem examination involves the taking, examining and keeping of small samples of tissue and body fluids. I understand that glass slides are usually disposed of after 10 years but that wax blocks will be kept indefinitely. I consent to these samples being used by the hospital or university for education/research. I want these samples to be kept only as part of my babys medical records. I want the blocks and slides to be returned to me for burial/cremation after the post mortem report is completed. Small amounts of tissue may be left after making the blocks and slides. Please indicate your preference for their disposal. Hospital disposal Return to me/funeral director for disposal
5.

Some children have inherited diseases and it can be important to test for these at post mortem examination by looking at the babys chromosomes and testing for abnormal genes. Study of stored samples can help doctors identify and understand new genetic diseases. I consent to genetic tests being done for diagnostic purposes. I consent to these samples being used by the hospital or university for education/research. I want these samples to be kept only as part of my babys medical records. I do not consent to genetic tests being done.
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6.
IMAGES
Photographs, X-rays and other images are an important part of a babys post mortem examination. They are usually kept as part of the babys medical record in keeping with current law. Images (with identification removed) can be valuable for medical teaching and ethically approved research. I consent to the images being used by the hospital or university for education/research. I want the images to be kept only as part of the medical records. I do not consent to images being taken.
7.
ORGAN RETENTION
As part of the post mortem it may be important for a whole organ, particularly the brain, to be retained for further examination as this may give a more detailed understanding of the disease. The study of retained organs given by families after examination is a very important part of medical teaching and research. I consent to organs being taken for further examination. I consent to organs being taken for further examination except those listed below:
8.

Where organs have been retained please indicate your preference for their further use or disposal. I want the hospital to dispose of the organs in a lawful and respectful way following completion of the post mortem report. I want the organs to be returned following completion of the post mortem report. I will arrange for their lawful disposal.2 I want the organs to be reunited with the body before it is released. I understand that this may significantly delay the funeral. I consent to the organs being used by the hospital or university for education/research. Other requests or conditions you would like to make:
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9.
BURIAL/CREMATION OF YOUR BABY

There are choices you may wish to consider about burial or cremation of your baby. Hospital staff will tell you which of these options the hospital can offer to you. I wish to take my baby and I will arrange family burial/cremation. I wish the hospital to arrange burial or cremation of my baby with scattering of the ashes in the Garden of Remembrance3. The procedures in the hospital have been explained to me and I understand that I will have no further part in the arrangements for my babys cremation/burial.
10. CONFIRMATION OR REFUSAL OF CONSENT

This section is signed to confirm that the form has been read and completed by the appropriate person(s)4 named below and witnessed by the doctor taking consent. Name of parent(s)/legal guardian giving consent (print):
Relationship(s) to the baby:
Signature(s):
Date:
Job title/grade:
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I confirm that I have: explained the procedures and reasons for them. explained the terms tissue samples, blocks and slides. checked for objections to removal or retention of tissue. and organs as indicated. discussed special requests/conditions.
Signature: Date:
1 2 3 4
This form applies to fetal deaths of 12 week size and above (CRL 6cm+) up to and including babies of 28 days of age. Later burial of organs, tissue blocks or residual tissue is done at parents expense. This option is not available at every hospital. Mothers signature is required for the death of a baby in the womb.
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CONSENT FORM FOR A HISTOPATHOLOGICAL EXAMINATION AND DISPOSAL OF EARLY MISCARRIAGES1

Department of Health, Social Services and Public Safety Consent form for a Histopathological examination and disposal of early miscarriages1
1.
PATIENT DETAILS
NAME: DOB: HOSPITAL: WARD: CONSULTANT: GP:
UNIT NO:
2.
INFORMATION
A miscarriage is when a pregnancy ends in the early months. Although in many cases the cause will remain unknown it is important for the tissue from the pregnancy to be examined both visually and microscopically to look for abnormalities which might explain the miscarriage or affect future pregnancies. In most cases this tissue, the products of conception, is made up only of the afterbirth (placenta), the lining of the womb (uterus) and blood clots. After visual examination tissue samples are made into blocks and slides for examination under a microscope. The slides are kept for 10 years and the blocks are kept indefinitely as part of your medical record. Sometimes a tiny embryo or fetus, or fetal parts are found among the tissue. Examination of this can give valuable information. With your consent a pathological examination will be similar to that already described, but as the internal organs are very small they are placed whole into wax blocks and in some cases the entire body may be placed in the block. I confirm that I have read and understood the information given above and that any questions I have asked have been answered to my satisfaction and understanding.
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3.
A
CONSENT
If fetal remains are identified visually: I consent to the examination of the embryo/fetus/fetal parts. I do not wish any examination of the embryo/fetus/fetal parts to be carried out. And I wish the hospital to undertake cremation/burial of the fetal remains and unprocessed tissue. I wish to take the fetal remains and unprocessed tissue for family burial/cremation.
If no fetal remains are identified visually: I wish the hospital to arrange cremation/burial of the unprocessed tissue. I wish to take the unprocessed tissue for burial/cremation.

Patients signature:
Date:
Doctor taking consent (print name):
Date:
Job title/grade:
Signature: (of doctor taking consent)
This form applies where any fetus present is below 12 week size (less than CRL 6cm)
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CHAPTER 6 CAREPLAN FOR WOMEN WHO EXPERIENCE A MISCARRIAGE, STILLBIRTH OR NEONATAL DEATH Introduction
This regional careplan has been developed to facilitate and promote quality care for all women who experience a miscarriage, stillbirth or neonatal death. It summarises principles of best practice, based on clinical and professional guidance, consistent with current legislation, and compatible with guidance on informed consent. The aim is to continually improve quality, provide effective care tailored to individual needs, and learn from experience. Each patient should be provided with the highest possible standard of maternity care and professionals with appropriate skills should be involved at the earliest opportunity. All professionals involved in the care of patients who have suffered the loss of a baby should ensure that the care provided is sensitive, competent and caring. This careplan is divided into four main sections:
Section I Section II Section III Section IV
Principles of good practice. Early pregnancy loss (baby less than 24 weeks gestation). Late pregnancy loss (baby at 24 weeks gestation and after). Loss of a neonate.
Sections II, III and IV each contain core information in addition to more detailed information relevant to the specific section. This careplan should be used as a framework for the delivery of care. It will however require adaptation to suit specific local services and circumstances. It provides guidance on the minimum standards of care for your Trust and the basis for the development of local care pathways.
DR IAN CARSON
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Section I - Principles of good practice. Trusts should supplement this section in accordance with local needs and circumstances. Aims of this careplan
To provide health professionals with principles of good practice. To promote a sensitive patient-focused approach in the care of patients and their families. To facilitate Trusts in producing locally appropriate information and guidance to supplement this careplan.
Definitions
A live birth is one in which there is any sign of life regardless of gestational age. The World Health Organisation (WHO) definition of a live birth states: Complete expulsion or extraction from its mother of a product of conception irrespective of the duration of pregnancy which, after separation, breathes or shows any evidence of life, such as beating of heart, pulsation of cord or definite movement of voluntary muscles, whether or not the umbilical cord has been cut or the placenta attached. A stillbirth is defined as: The complete expulsion from its mother, after the 24th week of pregnancy of a child which did not at any time after being completely expelled or extracted breathe or show any other evidence of life. (The Stillbirth Definition (NI) Order, 1992).
Patient Centred Care

Each patient will have unique needs, which must be recognised and addressed. Decisions must, where possible, be compatible with a patients wishes, choices and requests. Although decisions must be taken by the patient, the participation of her partner and family may be important in decision-making. Where the term patient appears throughout this document it may need to be interpreted as the woman and her partner/family.
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Section I - Principles of good practice. Professional Roles

Professional staff involved must fulfil their statutory obligations to notify the birth and to inform CEMACH (Confidential Enquiry into Maternal and Child Health) or the coroner where applicable. A network of lead bereavement training officers will be established to ensure best practice is in place. There should be regular audit of practice. There should be clear written guidelines for reporting critical incidents.
Patients Choices
Staff should be aware that the emotional distress patients experience may present in a variety of ways and staff should be prepared to respond to individual needs. All available choices should be clearly and fully explained and patients given time to consider choices and to ask questions. Some of the choices and decisions for patients may include whether to hold, dress or photograph their baby and what burial or cremation arrangements are preferred. Staff should formulate a plan and record choices and requests. Every effort should be made to help the patient understand what is happening. A checklist of discussion items should be developed. Language should be carefully chosen. Avoid using the terms non-viable fetus and "disposal of body", when speaking to patients. The individuality of the grieving process must be recognised and acknowledged. The basic principles must be observed including: sensitivity, understanding, compassion, honesty, choice, support, time, privacy, spiritual support and respect. The procedures, options and choices available should be discussed with a patient in a quiet and private environment, and documented clearly. Staff must respect patients feelings and choices and recognise their rights to grieve in their own way. If there is dissatisfaction or unhappiness with services, patients should be advised of the services of the Patients Advocate or local complaints process.
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Section I - Principles of good practice. Clinical Management

Normal good practice during and after the delivery should be consistent with available clinical and professional guidance. Efforts should be made to provide continuity of care by a senior member of staff experienced in caring for the bereaved. Patients should be cared for in a quiet, private environment. Appropriate follow-up should be undertaken.
Counselling Services
All professionals should be informed of the psychological effect of a pregnancy loss. Support and follow-up is essential. The patient may require referral for formal counselling.
Post Mortem examination

The nurse/midwife/doctor caring for the patient should discuss and clarify the patients wishes concerning post mortem and funeral arrangements. When the death needs to be reported to the coroner the patient must be provided with a full explanation supported by written information.
Hospital burial/cremation or own funeral arrangements

Staff should inform patients of choices regarding funeral or cremation arrangements.
Interpreter and special needs services

Interpreter services should be available as appropriate.
Dealing with patients of different faiths

Be aware of and respect the wishes and beliefs of all religions in relation to the care of dead bodies. Staff should speak to a patient about particular wishes regarding their religious beliefs. Be aware that in some religions, burials must take place within 24 hours of a death.
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Section I - Principles of good practice. Care for the professionals

The focus of care in pregnancy loss is directed initially at the patient and her family. The subsequent requirement may then be to support professional carers. Regular debriefing sessions should be offered to all staff who attend and care for bereaved patients. This should be a time for staff to reflect, debrief and identify any concerns or needs, both for the patient and for themselves and identify any areas for improvement. Training in loss and bereavement should be provided for all staff who care for patients after miscarriage, stillbirth, or loss of a neonate.
Using this booklet as reference/checklist

A complete copy of this booklet should be held for reference by the following: Maternity Wards. Special Care Baby Unit/Neonatal Intensive Care. Gynae Wards. Community Midwifery Teams. Paediatric Units. Day Procedure Units/Theatres. Accident & Emergency Departments. Mortuary and Pathology Departments. Chaplains. Social Services.
Review of careplan
This booklet should be subject to review every three years, and revised as required. All changes should be agreed and communicated to each area.
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Section II - Early pregnancy loss (baby less than 24 weeks gestation). Care and arrangements for patients who deliver a baby of less than 24 weeks gestation with no signs of life, and for the management of miscarriage. Trusts should supplement this section in accordance with local needs and circumstances. Introduction
This section provides good practice guidance for all health care professionals involved in the care of a patient who delivers a baby before the 24th week of pregnancy when the baby, following delivery, does not show any sign of life; or for those experiencing early miscarriage. In early miscarriage there may not be an identifiable fetus and traditionally the expelled tissue has been referred to as products of conception. However, irrespective of gestational age, and whether there is an identifiable fetus or not, sensitivity to the needs of patients experiencing a miscarriage is essential.
Status of the fetus

The Polkinghorne Report, Review of the Guidance on the Research Use of Fetuses and Fetal Material, (1989) states: Central to our understanding is the acceptance of the special status for the living human fetus at every stage of its development which we wish to characterise as a profound respect based upon its potential for development into a fully formed human being That respect carries over in a modified fashion to the dead fetus in a way analogous to the respect we afford to a human cadaver on the basis of its having been a human being.

Each patient will have unique needs, which must be recognised and addressed. Respect and understanding for the individual nature of experience is fundamental to care. Decisions must, where possible, be compatible with a patients wishes, choices and requests. Although decisions must be taken by the patient, the participation of her partner and family may be important in decision-making. Where the term patient appears throughout this document it may need to be interpreted as the woman and her partner/family. The patient is most likely to appreciate care when it is individualised to her needs, is agreed in consultation with staff, and recognises the emotional aspects of pregnancy loss.
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Section II - Early pregnancy loss (baby less than 24 weeks gestation). Guidance for the management of miscarriage
Clinical management of miscarriage should be consistent with professional guidance, for example guidance issued by the Royal College of Obstetricians and Gynaecologists. There should be ready access to services for any patient presenting with a threatened miscarriage. Ideally this includes an appropriately staffed Early Pregnancy Assessment Unit. The diagnosis of a miscarriage should be made by a clinician with appropriate experience in obstetric care. The options for care should be discussed with the patient in a quiet and private environment. Senior staff should be involved in counselling and adequate time allowed for decision making. If possible, admission should be to an appropriately sited single room. Patients with pregnancies of less than 20 weeks gestation are usually managed in a gynaecological ward. If over 20 weeks gestation, a maternity unit is more appropriate. However circumstances may vary according to clinical factors and the physical layout of the Trust. If, prior to treatment, a patient wishes to return home to make family arrangements this should be facilitated providing her health is not at risk.
Clinical Follow-Up
It may be appropriate to investigate the patient for an underlying cause, especially if there is a history of more than one miscarriage. Specific investigations will depend upon individual clinical circumstances. The wishes of the patient regarding follow-up should be sought and documented and the necessary arrangements made. This may include a visit by the community midwife/nurse and, if appropriate, a review at the gynaecological clinic. Referral to the Regional Genetics Centre should be discussed with the patient if the miscarriage is thought to have a genetic cause.
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Section II - Early pregnancy loss (baby less than 24 weeks gestation). Post Mortem examination and disposal
Valid consent should be obtained in keeping with the guidance contained in Post Mortem Examinations: Good Practice in Consent and the Care of the Bereaved.
Histopathological Examination and Disposal of Early Miscarriage For miscarriages of less than 12 weeks size/crown-rump length (CRL) less than 6cm, information should be provided and consent obtained as detailed in the Consent Form for Histopathological Examination and Disposal of Early Miscarriage.
Post mortem examination following Miscarriage For miscarriages of 12 weeks size and above (CRL 6cm+) information should be provided and consent obtained as detailed in the Consent Form for a Hospital Post Mortem Examination of a Baby. Medical staff should be involved in providing information, obtaining consent and counselling patients as appropriate. The booklet Information for Parents: Hospital Post Mortem Examination of a Baby should be provided to the patient.
Burial/Cremation
Consent for burial/cremation should be obtained as detailed in: Consent Form for Histopathological Examination and Disposal of an Early Miscarriage or Consent Form for a Hospital Post Mortem Examination of a Baby. Patients may request the hospital to make arrangements for the burial/cremation. Following written consent for the hospital to arrange burial/cremation some Trusts delay procedures for a period up to several weeks during which time the patient can contact the hospital if she changes her mind. Trust policies should be clearly stated in any information leaflet provided to the patient prior to discharge from the hospital.
Documentation
In addition to the normal documentation required for discharge and review arrangements the following action should be taken as appropriate: A Certificate of Confirmation of Miscarriage should be issued to the patient and other appropriate professionals.
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Section II - Early pregnancy loss (baby less than 24 weeks gestation).

Inform local co-ordinator of CEMACH (Confidential Enquiry into Maternal and Child Health) of late fetal loss (20-23 weeks gestation or weight over 300g). Ensure all others involved in care have been notified, e.g. antenatal clinic, GP, community midwife, ultrasound department, parentcraft, social worker.
Organisations for patients

Advise the patient of the Book of Remembrance and Annual Services, where available. Provide information leaflets for patient and family members. Provide contact addresses and telephone numbers of regional and local support groups.
Staff Training and Education

All staff must be aware of protocols for management of miscarriages within the unit. All medical staff seeking post mortem consent should be appropriately trained. All medical, nursing and midwifery staff should fully understand what is involved in a post mortem examination. All staff attending a patient who has experienced miscarriage, must have guidance and training in how to care for, and support families, who have suffered the loss of their baby. There should be regular audit and arrangements for risk management.
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Section III - Late pregnancy loss (baby at 24 weeks gestation and after). Care and arrangements for patients who deliver a baby of more than 24 weeks gestation with no signs of life (stillbirth). Trusts should supplement this section in accordance with local needs and circumstances. Introduction
This section sets out principles of good practice for the management of patients who deliver a baby of more than 24 weeks gestation with no signs of life (stillbirth). The circumstances of a stillbirth may vary widely, from cases in which the patient is aware that the baby has died in utero to occasions where death has occurred close to or during labour/delivery. While the circumstances may vary, the principles of patient management remain the same.
Definition
The Stillbirth (Definition) Order (Northern Ireland) came into operation on 1 October 1992 (No. 1310 (N.I. 10), Statutory Instruments). A stillbirth means the complete expulsion from its mother after the 24th week of pregnancy of a child which did not, at any time after being completely expelled or extracted, breathe or show any other evidence of life. The World Health Organisation (WHO) definition of a live birth states: Complete expulsion or extraction from its mother of a product of conception irrespective of the duration of pregnancy which, after separation, breathes or shows any evidence of life, such as beating of heart, pulsation of cord or definite movement of voluntary muscles, whether or not the umbilical cord has been cut or the placenta attached.

Each patient will have unique needs, which must be recognised and addressed. Respect and understanding for the individual nature of experience is fundamental to care. Decisions must, where possible, be compatible with a patients wishes, choices and requests. Although decisions must be taken by the patient, the participation of her partner and family may be important in decision-making. Where the term patient appears throughout this document it may need to be interpreted as the woman and her partner/family.
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Section III - Late pregnancy loss (baby at 24 weeks gestation and after).
The patient is most likely to appreciate care when it is individualised to her needs, is agreed in consultation with staff, and recognises the emotional aspects of pregnancy loss.
CLINICAL MANAGEMENT Antenatal Care

The diagnosis of intrauterine death must be made by a doctor with appropriate experience in obstetric care. The options of care should be discussed with the patient in a quiet and private environment. Senior staff should be involved in counselling and adequate time allowed for decision making. Admission should be to an appropriately sited single room if possible. The patient should be provided with appropriate verbal and written information about stillbirth. A checklist should be developed itemising investigations required. It may be considered appropriate to discuss the possibility of a post mortem examination at this stage. Ensure all others involved in care have been notified, e.g. antenatal clinic, GP, community midwife, ultrasound department, parentcraft, social worker. If, prior to delivery, a patient wishes to return home to make family arrangements this should be facilitated providing her health is not at risk. Cancel outstanding appointments.
Admission and Delivery

Continuity of care should be provided by senior staff. Discussions with the patient should cover family support during delivery and care during labour and delivery. Healthcare professionals should support patients through the difficulties associated with giving birth to a baby who has died. Choices for analgesia should be discussed carefully. It should be explained that pain relief will be provided but that strong sedation may block memories that patients later wish they could recall.
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Section III - Late pregnancy loss (baby at 24 weeks gestation and after). Postnatal Care
Ensure the patient has privacy and continuity of care from experienced staff. The patient should be accommodated in areas separate from other postnatal patients. Patients should be provided with appropriate information to prepare them for the babys appearance, which will be different to that of a liveborn baby. Patients who wish to photograph, hold or spend time with their dead baby should be facilitated in doing so. Discuss options for spiritual support. Inform clergy/religious advisor according to the patients requests. Discuss Baptism/naming ceremony with the patient. Discuss photography with the patient, distinguishing between clinical and personal photographs. Ensure baby is dressed in clothes of patients choice, or other appropriate baby clothes. Offer to provide mementos, including: hand/footprints; photographs; cot card; ID bands; lock of hair.
Discharge Home
Ensure investigation checklist is complete. Be aware that early discharge is often requested. The Consultant-in-charge should discuss the pregnancy/outcome and any preliminary post mortem examination results with the patient before discharge. Postnatal care should be offered by the community midwife and GP. A followup visit by the hospital midwife involved in the patients care may be offered within six weeks of the loss. Referral to the Regional Genetics Centre should be discussed with the patient if the stillbirth is thought to have a genetic cause. A timely discharge letter should be written by senior staff to the GP, and where relevant to the referring clinician.
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Section III - Late pregnancy loss (baby at 24 weeks gestation and after).
Follow-up arrangements should be discussed with the patient, her wishes documented and the necessary arrangements made by the consultant. The baby should be discharged from the Mortuary. If other arrangements exist, e.g. from a Quiet Room, the Mortuary must be notified before discharge.
Hospital Review
Review by the Consultant-in-charge should take place in an environment which provides privacy and gives adequate time for discussion. Ensure all relevant notes, results of investigations and if applicable the full post mortem report are available for the consultation. The patient should be advised about her obstetric care in any future pregnancy, and the plan of care should be clearly documented. Check all investigations are complete before arranging review appointment.

Notify the Mortuary and complete relevant documentation. Valid consent should be obtained in keeping with the guidance contained in Post Mortem Examinations: Good Practice in Consent and the Care of the Bereaved. If a post mortem examination is required the patient should be provided with the booklet, Information for Parents: Hospital Post Mortem Examination of a Baby. Consent should be obtained as detailed in Consent Form for a Hospital Post Mortem Examination of a Baby. Medical staff should be involved in providing information, obtaining consent and counselling patients as appropriate. If consent for a post mortem examination is obtained, contact the Paediatric Pathology Service to arrange the examination. Contact the Mortuary to arrange transport to and from the Royal Hospitals in accordance with agreed guidance.
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Section III - Late pregnancy loss (baby at 24 weeks gestation and after). The Placenta
The placenta should be sent for histology. If the baby is to have a post mortem examination performed, the same pathologist should examine the placenta.
Burial/Cremation
Consent for burial/cremation should be obtained as detailed in Consent Form for a Hospital Post Mortem Examination of a Baby. Patients may request the hospital to make arrangements for the burial/cremation. Following written consent for the hospital to arrange burial/cremation some Trusts delay procedures for a period of up to several weeks, during which time the patient can contact the hospital if she changes her mind. Trust policies should be clearly stated in any information leaflet provided to the patient prior to discharge from the hospital.
Documentation
In addition to the normal documentation required for discharge and review arrangements the following action should be taken as appropriate: Notify the stillbirth. Provide the Stillbirth Certificate to the patient. Advise the patient about Registration of Birth. Inform the local co-ordinator of CEMACH (Confidential Enquiry into Maternal and Child Health).
Organisations for Parents

Advise the patient of the Book of Remembrance and Annual Services, where these are available. Provide information leaflets for patient and family members. Provide contact addresses and telephone numbers of regional and local support groups.
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Section III - Late pregnancy loss (baby at 24 weeks gestation and after). Staff Training and Education
All staff must be aware of protocols for management of patients who have experienced a stillbirth within the unit. All medical staff seeking post mortem consent should be appropriately trained. All medical, nursing and midwifery staff should fully understand what is involved in a post mortem examination. All staff attending a stillbirth must have guidance and training in how to care for and support families who have suffered the loss of their baby. There should be regular audit, including perinatal meetings and arrangements for risk management.
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Section IV - Loss of a neonate Care and arrangements for patients who deliver a baby that dies within the neonatal period. Trusts should supplement this section in accordance with local needs and circumstances. Introduction
This section sets out principles of good practice for the management of patients whose baby dies in the neonatal period. The circumstances of a neonatal death may vary widely, from cases in which the patient is aware that the baby has a serious abnormality incompatible with life, to occasions where the death occurs unexpectedly shortly after delivery, and other cases in which there is a death in the first 28 days of life. While the circumstances may vary, the principles of patient management remain the same. The focus of this document is the care of a patient for whom a neonatal death is inevitable. If death occurs suddenly within the first few days or weeks of life, the opportunity to discuss events and prepare the patient may be limited. In such cases particular attention should be focused on providing effective patient centred-care in the most appropriate setting.
Definitions
The World Health Organisation (WHO) definition of a live birth states: Complete expulsion or extraction from its mother of a product of conception irrespective of the duration of pregnancy which, after separation, breathes or shows any evidence of life, such as beating of heart, pulsation of cord or definite movement of voluntary muscles, whether or not the umbilical cord has been cut or the placenta attached. The neonatal period refers to the first 28 days of life.

Each patient will have unique needs, which must be recognised and addressed. Respect and understanding for the individual nature of experience is fundamental to care. Decisions must, where possible, be compatible with a patients wishes, choices and requests. Although decisions must be taken by the patient, the participation of her partner and family may be important in decision-making. Where the term patient appears throughout this document it may need to be interpreted as the woman and her partner/family.
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Section IV - Loss of a neonate

The patient is most likely to appreciate care when it is individualised to her needs, is agreed in consultation with staff, and recognises the emotional aspects surrounding the loss of a baby.
CLINICAL MANAGEMENT Antenatal Care

A fetal abnormality incompatible with survival may have been diagnosed by ultrasound. If so, this provides time for the preparation of the patient and staff. The developments in fetal anomaly scanning services enhance the opportunity for diagnosis, preparation and decision-making and place of confinement (e.g. conditions which may require intensive care or neonatal surgery). Paediatric advice should be available, if appropriate, prior to admission/ delivery. In some circumstances it may be relevant to discuss post mortem examination at this stage. Ensure all others involved in care have been notified, e.g. antenatal clinic, GP, community midwife, ultrasound department, parentcraft, social worker. Cancel outstanding appointments.
Admission and Delivery

In cases of extreme prematurity it may be apparent that, although the baby may be born alive, early death is inevitable. An experienced obstetrician/paediatrician should advise on which resuscitative procedures are appropriate. Ensure patients have privacy and continuity of care from experienced staff. Discuss options for spiritual support with the patient. A checklist should be developed itemising investigations required. Privacy and support from appropriately trained staff is essential. Where early neonatal death is inevitable, patients need to be informed that the baby may have a heartbeat and make breathing efforts for some time. Staff should assure patients that they will make the baby as comfortable as possible.
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Healthcare professionals should support patients through the difficulties associated with giving birth to a baby who will almost certainly die shortly after birth. Choices for analgesia should be discussed carefully. It should be explained that pain relief will be provided but that strong sedation may block memories that mothers later wish they could recall. Continuity of care should be provided by senior staff. Discussions with the patient should cover family support during delivery, and care during labour and delivery.
Postnatal Care
Ensure the patient has privacy and continuity of care from experienced staff. The patient should be accommodated in an area separate from other postnatal patients. Arrangements will vary depending on whether the baby is being cared for in the labour ward or the neonatal unit. Decisions regarding management should be taken by a senior paediatrician in consultation with the patient. Following the babys death arrangements may vary depending on whether death was predicted, inevitable, sudden or unexpected. Investigations should be tailored to individual circumstances. Patients who wish to photograph, hold or spend time with their dead baby should be facilitated in doing so. Discuss options for spiritual support. Inform clergy/religious advisor according to the patients requests. Discuss Baptism/naming ceremony with the patient. Discuss photography with the patient distinguishing between clinical and personal photographs. Ensure baby is dressed in clothes of patients choice, or other appropriate baby clothes. Offer to provide mementos, such as a booklet containing: hand/foot-prints; photographs; cot card; ID bands; lock of hair. Notify the Mortuary and complete relevant documentation. The baby should be discharged from the Mortuary. If other arrangements exist, e.g. from a Quiet Room, the Mortuary must be notified before discharge.
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Section IV - Loss of a neonate Discharge Home

Ensure investigation checklist is complete. Be aware that early discharge is often requested. The Consultant Obstetrician and Paediatrician should discuss pregnancy/outcome and any preliminary post mortem examination results with the patient before discharge. Postnatal care should be offered by the community midwife and GP. A followup visit by the hospital midwife involved in the patients care at the time of delivery may be offered within six weeks of the death. Referral to the Regional Genetics Centre should be discussed with the patient if the neonatal death is thought to have a genetic cause. A timely discharge letter should be written by senior staff to the GP, and where relevant to the referring clinician. Follow-up arrangements should be discussed with the patient, her wishes documented and the necessary arrangements made by the consultant.
Hospital Review
Review by the Consultant Obstetrician and/or Paediatrician in-charge should take place in an environment which provides privacy and gives adequate time for discussion. Ensure all relevant notes, results of investigations and if applicable the post mortem report are available for the consultation. The patient should be advised about her obstetric and neonatal care in any future pregnancy and the plan of care should be clearly documented. Check all investigations are complete before arranging review appointment.

Notify the Mortuary and complete relevant documentation. Valid consent should be obtained in keeping with the guidance contained in Post Mortem Examinations: Good Practice in Consent and the Care of the Bereaved.
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If a post mortem examination is required the patient should be provided with the booklet, Information for Parents: Hospital Post Mortem Examination of a Baby. Consent should be obtained as detailed in Consent Form for a Hospital Post Mortem Examination of a Baby. Medical staff should be involved in providing information, obtaining consent and counselling patients as appropriate. If consent for a post mortem examination is obtained, contact the Paediatric Pathology Service to arrange the examination. Contact the Mortuary to arrange transport to and from the Royal Hospitals in accordance with agreed guidance.
Coroners Cases
If a coroners post mortem examination is required the patient should be provided with the booklet, Information for Relatives: Coroners Post Mortem Examination. Consent for further use of tissue samples, genetic material and images can be sought using the Form for a Coroners Post Mortem Examination. Informed consent for the further use of tissue samples, samples for genetic testing and images should be obtained in keeping with the guidance contained in Post Mortem Examination: Good Practice in Consent and the Care of the Bereaved.
Burial/Cremation
Consent for burial/cremation should be obtained as detailed in Consent Form for a Hospital Post Mortem Examination of a Baby. Patients may request the hospital to make arrangements for the burial/cremation. Following written consent for the hospital to arrange burial/cremation some Trusts delay procedures for a period of up to several weeks, during which time the patient can contact the hospital if she changes her mind. Trust policies should be clearly stated in any information leaflet provided to the patient prior to discharge from the hospital.
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Section IV - Loss of a neonate Documentation

In addition to the normal documentation required for discharge and review arrangements, the following action should be taken as appropriate: Notify the birth. Notify the death. Advise the patient about Registration of Birth and Death. Inform the local co-ordinator of CEMACH (Confidential Enquiry into Maternal and Child Health).
Organisations for Parents

Advise the patient of the Book of Remembrance and Annual Services, where these are available. Provide information leaflets for patient and family members. Provide contact addresses and telephone numbers of regional and local support groups.
Staff Training and Education

All staff must be aware of this protocol for neonatal deaths within the unit. All medical staff seeking post mortem consent should be appropriately trained. All medical, nursing and midwifery staff should fully understand the post mortem examination. All staff attending a neonatal death must have guidance and training in how to care for and support families who have suffered the loss of their baby. There should be regular audit, including perinatal meetings and arrangements for risk management.
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CHAPTER 7 INFORMATION FOR RELATIVES ON A CORONERS POST MORTEM EXAMINATION Information about a coroner's Post Mortem examination
This leaflet gives information about a Coroners post mortem examination. We hope that the information in this booklet will help you to understand the reasons for undertaking a coroners post mortem examination and what is involved and how it might be valuable to you in the future. Your consent is not required for the post mortem to take place but you may be asked to consent to the further use of tissue once the Coroner has completed his investigation and agreed to its release. The staff will answer any questions you may have.
You may contact:
Please telephone this number
between
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What is a coroner?
A Coroner is an independent officer of the court who investigates sudden, violent or unexplained deaths.
What is a coroners investigation?

A Coroners post mortem examination relates to cases where death occurs under certain circumstances such as: sudden or unexpected deaths deaths where the cause of death is unknown or a doctor is unable to issue a medical certificate stating the cause of death (death certificate). all unnatural deaths (including accidents, suspected suicide or suspicious deaths). deaths thought to be due to industrial disease. deaths thought to be due to negligence. deaths occurring during surgery or anaesthesia. deaths from any cause other than natural illness or disease.
If a coroner decides that a post mortem examination is required, a pathologist is asked to carry it out and report the findings to the Coroner. A coroners post mortem examination, which is required by law, does not require the consent of the next of kin, although the family will be informed about it. If the post mortem examination shows that death was due to natural causes and there is no need for an inquest, the Coroner will issue a certificate so that the death can be registered.

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A post mortem examination can provide information which will help the Coroner and you understand why your relative/child has died. Unfortunately there are times when the post mortem examination is unable to find this out. An examination is only carried out if the Coroner has ordered it.

The pathologist works to standards set by the Royal College of Pathologists. During the post mortem, a very careful external examination is carried out. The pathologist then makes an incision (cut) down the front of the body and internal organs are removed and examined. In most cases the organs are returned to the body afterwards. Occasionally it is important to retain whole organs for further examination, as this can provide more detailed understanding of the cause of death. If the brain needs to be examined, an incision is made in the back of the head around the hairline. It takes six to eight weeks to properly examine the brain because special processes (fixation) need to be carried out. Small samples of tissue will be taken from each organ for examination under the microscope. Sometimes tissue samples or fluid (such as blood) will be taken for further tests such as looking at the chromosomes or genes or to search for infections due to bacteria or viruses which may have caused the unexplained death. The samples of tissue taken for testing are usually kept as part of pathology records in case they are needed to answer further questions about the cause of death.

Although some information can be obtained from looking directly at organs in a post mortem examination, often the only way to understand properly what has happened is to look at part of an organ under the microscope. Small samples of tissue are removed from the organs and placed in little plastic containers (cassettes). These samples measure approximately 1.5 x 1.5 cm (less than the size of a postage stamp) and up to 5mm thick. Samples from tiny organs are much smaller and those from the brain are larger, usually 2 x 2 cms.
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The tissue is chemically treated to remove water, which is replaced with wax. These tissue blocks become hard. Very thin slices (sections), a tenth of the thickness of a human hair, are then cut off the surface. The sections are placed on glass slides so that they can be examined under a microscope. More than one slide can be cut from one block. These techniques are the same as those used to examine tissue from living patients.
The wax blocks and slides are kept by the pathologist for the records. Blocks are kept indefinitely and slides for approximately 10 years and these are stored in special cabinets designed for this purpose.
Residual tissue
After the blocks have been prepared there may be small amounts of unused or residual tissue left over. The pathologist will need to know how you want this tissue to be disposed of or returned to you. There is a section on the Form for a coroners Post Mortem that will record your wishes.
Organ retention, disposal or further use

If you have consented for an organ to be retained after the Coroner has agreed to its release, the consent form gives you several options. You can choose: For the organs to be used in medical education, or research, or both. For the organs to be returned to you, through your funeral director, once the Coroner has agreed. You will then need to arrange a separate cremation or burial service for these. This will be at your own expense. For the hospital to arrange disposal of the organs through cremation, incineration or burial. Staff will let you know what options are available in the hospital.

Tissue blocks and slides, photographs, X-rays and other images are part of the pathology records. Your permission is needed if they are to be used for other purposes once the Coroner has agreed to their release. You can choose: For the Coroner to keep them for the records.
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To give them for use in medical education, or research, or both. (You may wish only to give some of them). For the blocks and slides to be returned to you for cremation or burial. This means it will not be possible to have the case reviewed or seek a second opinion at a later date.
Your relative/childs body after the post mortem

Usually in a coroners post mortem the body is released immediately after the examination, whether or not there is to be an inquest. The incision on the body from the post mortem examination is bandaged once the examination is finished and is often not visible. The incision on the head will normally be covered by hair, but may sometimes be visible.
If a death is reported to the Coroner you should not make funeral arrangements until you have the Coroners permission. In almost all cases tissue samples and sometimes organs will have been removed as part of the post mortem procedure which will need to be kept for some time, at least until the inquest or other court proceedings are over. Although the Coroner remains in control of the retained material you should make your wishes known about disposal if or when it is no longer needed by the Coroner. The funeral can take place before the inquest is held. The body can be cremated, buried or taken out of Northern Ireland once the Coroner is satisfied that it is no longer needed. If there is to be an inquest the Coroner can allow burial or cremation once the post mortem examination is completed.
Death Certificates
The death can be registered and a death certificate issued only after the Registrar of Deaths has received the certificate from the Coroner after the inquest or other legal proceedings are completed. The Coroner can, however, supply a coroners Certificate of Evidence of Death for use in the meantime.
Organ transplants and donation

The Coroner is not usually concerned with organ transplants or donation. However, if the death has to be reported to the Coroner you need his permission before you can donate either organs of your relative/child for transplant or the whole body for medical teaching.
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The Inquest
The inquest is not a trial. An inquest is a public inquiry by a coroner sitting with or without a jury, into the circumstances surrounding the death. The purpose is to determine the identity of the person who has died; how, when and where they died; and to work out the details the Registrar of Deaths needs to register the death. The findings of the inquest are the means by which a person died, not who or what was responsible.
Who is involved in an Inquest?

In certain circumstances a jury of between 7 and 11 people take part in the inquest, although that is not always necessary. Anyone with evidence relevant to the inquiry can put themselves forward as witnesses or be summoned by the Coroner. Usually witnesses can be questioned by anyone with a proper interest, including: Next of kin of the person who died, or their representatives or executors of wills. Representatives of interested insurance companies or trade unions. Those responsible for the death in any way (e.g. an employer or a motorist causing death) or their representatives. Others at special risk or those appearing to the Coroner to have a proper interest.
The consent form

As the post mortem is ordered by the Coroner your consent is not needed for the examination. It is however important for you to understand what is involved in this. Once the Coroner has completed his investigation your permission is needed for any further use of your relative/childs tissue or organs. The form is a written record of your decisions about the further use of organs, tissue, blocks, slides, genetic samples and images. This makes clear to everyone what you have and have not agreed to. If you change your mind at any stage you can withdraw your consent, even after signing. You will be given a copy of the consent form, a copy will be filed in the Coroners records and a copy will be sent to the pathologist. This ensures that everyone knows your decisions.
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The consent form asks you about whether you want to give blocks and slides, images, genetic samples or organs for use in medical education and/or research once the Coroner has agreed to their release. Medical education: this includes teaching, training and educating all types of doctors, nurses and health professionals. Research: examining tissue, organs and images 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 and 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 from post mortem examinations and discuss the findings with an experienced pathologist. Sharing information between doctors and hospitals is also very important for public health surveillance. This can make sure that infectious diseases do not spread throughout the population. A separate copy of the consent form will be kept, if you agree that blocks and slides, images, genetic samples or organs may be used for medical education and research.
Questions
You can ask as many questions as you like. You may also wish to discuss the decision about consent for further use of the tissue, blocks and slides with other family members. People vary as to how much information they want about what will happen during a post mortem examination. If you would like more details or want to discuss the matter with another health professional, please ask.
Before giving your consent to further use of tissue, organs, genetic samples, images, blocks and slides
It is important that you understand all the information and come to your own decision. Staff are available to give further help, if you wish. They can also discuss your options. They will ask you to say whether you have understood the information you have been given. If you are not sure, say so.
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Further Information
Further information about the Coroner is available from: Information Service, Northern Ireland Court Service, Windsor House, 9-15 Bedford Street, Belfast BT2 7LT Telephone: Fax: 02890 328594 02890 439110

Archiving Archiving is the long-term preservation of tissue or organs. Archives are important and useful because: The tissue/organ can be examined if new techniques or knowledge become available. This gives a clearer explanation of a childs illness. The education and training of medical students and doctors is easier if they can see for themselves what happens inside the body in disease. Research using archived tissues and organs can help in the diagnosis and treatment of future patients.
Tissue and Organ Banks Rare diseases can be investigated properly only when a number of cases have been studied. This means that tissues/organs from post mortem examinations may be stored safely and securely until enough cases have been collected and then the research can begin. Tissues/organs are only stored with the family's permission. Body Parts Body parts are groups of organs, a limb or part of a limb. Cassette A small plastic container, usually measuring 2.5 x 1.5 x 0.5 cms, in which tissue samples are placed at post mortem examination. Each cassette is marked with the patients identifying number. The tissue samples remain in the cassettes from the time of the post mortem examination, through processing and slide cutting, and are stored in them.
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Consented post mortem examination A post mortem examination carried out with the agreement of relatives, not one required by law. Coroner The Coroner is an independent lawyer who investigates deaths due to unnatural, suspicious or unknown causes. The Coroner may hold an inquest in a small number of cases. Coroner's post mortem examination This is a post mortem examination that has been asked for by a coroner. The agreement of relatives is not needed as the post mortem examination is required by law but the tissue or organs cannot be used for other purposes without your consent and the agreement of the Coroner. Death Certificate A death certificate is required to allow the death of the person to be registered, along with the cause of death. It lets the Registrar of Deaths issue the form allowing the funeral to take place. Fixation Before organs or tissues can be examined in detail, they have to be hardened by soaking them in a chemical, usually formaldehyde. This is known as fixation or fixing. The complete process may take several weeks, especially for the brain. Full post mortem examination The full post mortem involves examination of all the organs in the chest and abdomen, and the brain. Inquest A coroner may hold an inquest into any death that is reported to him. This may be when a death is known or suspected to be due to anything other than natural disease. Sometimes it is held in the presence of a jury. An inquest considers all the evidence about the death and gives relatives or their legal representative an opportunity to question witnesses. Incision An incision is a cut in the skin to allow the internal organs to be examined. It is made in the same way as for a surgical operation. The incision is closed with stitches at the end of the post mortem examination and may then be bandaged.
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Limited post mortem examination This is a post mortem where only some organs are examined. This may only provide a part of the possible information about the illness. Microscope This is a machine with special lenses that allows the pathologist to look at the tissue on a glass slide, and see the cells magnified. Changes in the tissue that are not normal indicate the type of disease. Mortuary The mortuary is a group of rooms where bodies are kept in refrigerators before being collected by the funeral directors. The mortuary also includes the post mortem room where the examinations are performed. Organ(s) The body contains many organs such as the brain, heart, kidneys, lungs and liver. Each organ carries out different functions. The organs are connected in the body by nerves, blood vessels and fibres. Pathologist A pathologist is a medical doctor trained in the diagnosis and study of disease. Pathologists who perform post mortem examinations usually work in hospitals, and are also involved in the diagnosis of disease in live patients. Some pathologists have further specialist training: Neuropathologists study diseases of the brain. Paediatric pathologists study diseases of babies and children. Forensic pathologists study sudden, suspicious or unnatural deaths.
Pathologists work to standards laid down by the Royal College of Pathologists. Regional centre for specialist post mortem examination Sometimes it is necessary for a body to be moved to another hospital for the post mortem examination where there are special facilities and pathologists skilled in dealing with particular cases (for example, deaths in infancy and childhood and diseases of the brain). Tissue Organs are made up of tissue, which is a collection of cells that give organs their special functions. For example, the heart contains muscle tissue composed of cells that contract to pump the blood.
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CONSENT FORM FOR A CORONERS POST MORTEM EXAMINATION
Department of Health, Social Services and Public Safety Consent form for a Coroners Post Mortem examination1
1.
PATIENT DETAILS
2.
INFORMATION
The Coroner is the legal officer charged with the responsibility to investigate the cause of death in certain cases. He directs that the post mortem examination is undertaken and relatives consent is not required. At the end of his investigation the Coroner may release tissue samples which, with your consent, may be used for other purposes such as medical education or ethically approved research. Please read through the options available carefully with the doctor and tick the boxes that show your decisions. I confirm that I have read and understood the booklet: Information for Relatives on a Coroners Post Mortem Examination. I confirm that any questions about post mortem examinations that I have asked have been answered to my satisfaction and understanding.
3.
CONSENT FOR FURTHER USE OF TISSUE SAMPLES, GENETIC MATERIAL AND IMAGES
As part of the post mortem examination tissue samples, mostly in the form of blocks and slides, images and small amounts of body fluids will be taken and used to determine the cause of death. In some cases analysis of chromosomes and other genetic tests are undertaken. At the completion of the investigation, and only with the Coroners agreement, they can be released. These samples can be valuable for medical education and ethically approved research and you can consent to them being retained by the hospital or university for such purposes. Alternatively you may want them to be kept only as part of your relatives medical records or returned to you. I understand that post mortem examination may involve the taking, examining and keeping of small samples of tissue, genetic material, images and body fluids to investigate the cause of death and as a medical record. I understand that glass slides are usually disposed of after 10 years but that wax blocks will be kept indefinitely.
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I consent to these samples being used by the hospital or university for education/research. I want these samples to be kept only as part of the medical records. I want the blocks and slides to be returned to me for burial/cremation after the Coroner has completed his investigation.
4.
DISPOSAL OF RETAINED ORGANS

As part of the post mortem examination whole organs may be taken for further examination as they can provide a more detailed understanding of the cause of death. Where organs have been retained please indicate your preference for their disposal once the Coroner has completed his investigation and has agreed to their release. I consent to the organs being used by the hospital or university for education/research. I want the hospital to dispose of the organs in a lawful and respectful way following completion of the Coroners investigation. I want the organs to be returned following completion of the Coroners investigation. I will arrange for their lawful disposal. I want the organs to be reunited with the body before it is released but I understand that this will significantly delay the funeral, which can be up to several months or occasionally longer. Small amounts of tissue may be left after making the blocks and slides. Please indicate your preference for their disposal.
Hospital disposal
Return to me/funeral director for disposal
Other requests or conditions you want to make:
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5.
CONFIRMATION OF INFORMATION GIVEN AND CONSENT TAKEN

This section is signed to confirm that the form has been read and completed by the person(s) named below and witnessed by the doctor giving information/taking consent. Name of next of kin/parent(s)/legal guardian (print):
Relationship(s) to the deceased2
I /We understand that I/we do not have to give consent for this post mortem examination but that my/our consent is required for further use of the tissue once the Coroners investigation is complete and he agrees to its release. I/We have also stated my/our wishes for the disposal of tissue in the future. Signature(s):
Date:
Name of doctor giving information/taking consent (print name):
Job title/grade:
I confirm that I have: explained Coroners post mortem procedures and reasons for them explained the terms organs, tissue samples, blocks and slides taken consent for further use of materials once the Coroners investigation is complete discussed special requests/conditions
Signature:
Date:
1 2
This form applies to all Coroners Post Mortem Examinations of Children and Adults For a child under 18 years of age only parents or those with legal parental authority can give consent. For an adult the wishes of the patient, if known, take precedence over the wishes of relatives. A nominated representative may have been appointed by the patient to make decisions on their behalf. If neither apply then next of kin have the authority to consent on behalf of the patient. These are ranked in authority: 1. husband/wife/partner 2. parent or child 3. brother/sister 4. nephew/niece 5. stepmother/father 6. half-brother/sister 7. friend of long standing.
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CHAPTER 8 HOW TO RESPOND
We would welcome your views on these documents. We have asked a number of specific questions and would like your answers to these and any other comments you wish to make:
These should be answered after reading the Information Booklets and Consent Forms.
Q.1 Do you consider that these consent forms should be introduced throughout the HPSS? Do you consider that relatives will find the consent forms easy to understand? If not, do you have any suggestions for improving them? Do you consider that relatives will find the information booklets easy to understand? If not, what suggestions do you have for improving them?
Q.2
Q.3
These should be answered after reading Post Mortem examinations Good Practice in Consent and the Care of the Bereaved.
Q.4 Do you think that the information provided in the guide is clear and easy to understand? If you have suggestions for improving it please tell us. Are there any further areas which you feel should be covered in this document?
Q.5
These should be answered after reading The Careplan.

Q.6 Do you think that the information provided in the careplan is clear and easy to understand? If you have suggestions for improving it please tell us. Are there any further areas which you feel should be covered in this document?
Q.7
These should be answered after reading the Complete Document.

Q.8 Do you think that the proposed documentation may have an adverse impact on equality of opportunity and/or good relations for any of the categories listed in Section 75 of the Northern Ireland Act 1998. If you have answered yes, please describe the adverse impact that you feel the guidance is likely to have on this group or groups and how you feel this adverse impact could be reduced or alleviated by changing the documentation?
Q.9
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Q.10 Do you think that any additional guidance is required for specific groups? If yes, please indicate and give reasons for your answer. Are there any sources of information that you would consider should be included in any additional guidance?
These should be answered after reading the Complete Consultation Documents.

Q.11 To what extent do you think that the guidance adequately addresses human rights issues? If not, can you suggest ways in which this can be improved. Unless otherwise requested, it will be assumed that responses are not confidential and will be made available to interested parties. Responses can be sent by post or electronic mail to the address below.
TIMESCALE FOR RESPONSE

Responses must be received by 27 April 2004.
ADDITIONAL COPIES AND ACCESSIBLE VERSIONS

Copies of the full documents are available on request from the address below and on the Departments website: www.dhsspsni.gov.uk The Department will make the documents available in audio tape, Braille, Irish and Cantonese. The Department will also consider requests for translations into other minority ethnic languages or other formats. After 27 April 2004 the responses will be analysed. The Department of Health, Social Services and Public Safety will take account of the views expressed during the consultation process before issuing final guidance.
CONTACT ADDRESS
Mr Nigel Palmer Department of Health, Social Services and Public Safety Secondary Care Directorate Room 1 Annexe 1 Castle Buildings Belfast BT4 3SQ Telephone: Fax: E-mail: 028 9052 2126 028 9052 3302 nigel.palmer@dhsspsni.gov.uk
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APPENDICES
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APPENDIX A ARCHIVING AND STORAGE OF HUMAN TISSUE RESPONSIBILITIES OF AN ARCHIVE HOLDER

a) Human tissue, including blocks or slides, will only be held in defined locations in Trusts or Universities. Each collection of tissue, blocks or slides will be under the control and supervision of an archive holder, who will be a named individual, usually a medical consultant or scientist of similar seniority from the relevant area of the Trust or University in which the archive is held. There will in addition be a named deputy archive holder in each case. Access to tissue, blocks or slides for teaching, research or audit purposes shall be obtained by written application to the appropriate archive holder. The archive holder will be responsible for ensuring that a person applying for access to tissue, blocks or slides is appropriately qualified (i.e. has a relevant medical or scientific qualification and appropriate experience) to make use of the material and has a legitimate purpose in doing so. Any use of tissue, blocks or slides for research purposes will require prior approval by an appropriately constituted Research Ethics Committee. The archive holder will be responsible for ensuring that such Ethics Committee approval has been obtained before allowing access to the material, a copy of which should be filed with the archive holder. The archive holder shall be responsible for ensuring that tissue, blocks or slides are stored in an appropriate secure environment. The archive holder shall be responsible for ensuring that complete records are maintained of all tissue entering the archive and of subsequent use and disposal. In addition, for post mortem tissue, the archive holder will ensure that written evidence of the consent is held with the archive. Use of surgical tissue must be in accordance with the consent which has been obtained. The archive holder will make a report on an annual basis to the institution in which the archive is held, detailing the extent of the archive at the beginning of the year, any additions to or deletions from the archive during the year, and the extent of the archive at the year end. The report shall also indicate the use to which material has been put during the year in question. Each institution (HSS Trust or University) will make a report on an annual basis to the appropriate authority (Human Tissue Authority or other responsible body) with regard to human tissue currently held and the uses to which it has been put during the period.
b)
c)
d)
e)
f)
g)
h)
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i)
In the case of existing archives of tissue, including blocks or slides, these materials have continuing value as a resource for research, teaching, audit and other purposes (e.g. laboratory quality control). The archive holder will be responsible for ensuring that proper documentation of the use of existing and future archive material is maintained. Tissue may continue to be used for research as long as prior approval is obtained from an appropriate ethics committee, in line with research governance requirements. Archive material must not be used where relatives (in the case of post mortem tissue) or the patient (in the case of surgical biopsy tissue) request their return or place restrictions on their use.
j)
Archival material and related record keeping will be subjected to audit at appropriate intervals as directed by the Human Tissue Authority or other responsible body.
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RESPONSIBILITIES OF THOSE OBTAINING MATERIAL FROM AN ARCHIVE

a) Anyone wishing to use archived human tissue, including blocks or slides, for teaching, research or audit shall apply in writing to the archive holder, who will be a named individual, usually a medical consultant or scientist of similar seniority, in the relevant area of the Trust or University in which the archive is held. Permission to use tissue, blocks or slides shall only be given to appropriately qualified applicants i.e. applicants with a relevant medical or scientific qualification and appropriate experience. Any use of tissue, blocks or slides for research purposes will require prior approval by an appropriately constituted Research Ethics Committee. The applicant is responsible for ensuring that such ethics committee approval has been obtained and that a written copy of the approval has been given to the archive holder. Tissue, blocks or slides shall not be used for any other research purpose than that specifically approved by the Research Ethics Committee. The applicant is responsible for ensuring that any tissue, blocks or slides obtained from the archive are stored in an appropriate secure environment, subject to regulation and inspection as determined by the Human Tissue Authority or other regulatory body. The applicant is responsible for ensuring that a complete written record is maintained of tissue, blocks or slides borrowed from the archive and that the material is not passed on to any third party without the written permission of the archive holder. The applicant is responsible for returning all material to the archive when it has been used for the purposes for which approval was given. The applicant must not use tissue, blocks or slides for any purpose other than those specifically applied for to the archive holder.
b)
c)
d)
e)
f)
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APPENDIX B A CODE OF GOOD PRACTICE GLOSSARY OF TERMS

accreditation A process, based on a system of external peer review using written standards, designed to assess the quality of an activity, service or organisation. The process of measuring the quality of an activity or service provided by an organisation. Systematic review of the procedures used for diagnosis, care, treatment, and rehabilitation, examining how associated resources are used and investigating the effect care has on the outcome and quality of life for the patient. Dissection and examination of a body after death in order to determine the cause of death or the presence of disease process. A framework through which HPSS organisations are accountable for both continuously improving the quality of their services and safeguarding high standards of care, by creating an environment in which excellence in clinical care can flourish. Management of clinical risk at an organisational level is an important aspect of clinical governance. Clinical risk management recognises that risk can arise at many points in a patients journey, and that aspects of how organisations are managed can systematically influence the degree of risk. Record of medical events and treatments. Service provided by healthcare professionals. All medical, midwifery, nursing and other professional staff who cared for the deceased during life and after death. Abbreviated medical history presented in a logical manner. An expert clinical practitioner who specialises in clinical work as opposed to laboratory-based studies.
assessment
audit
autopsy
clinical governance
clinical history clinical service clinical staff
clinical summary
clinician
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college
In the UK, the term college, when used relating to healthcare, as for example in The Royal College of refers to organisations which usually combine an educational role with promotion of professional standards. The granting of permission. Guidelines for applying good practice in ensuring infection risks are managed. The essential information related to a specific medical condition may include demographic, clinical management and outcome data used for audit and research. Post mortem examination carried out at the request of the Coroner. Provide the more detailed and practical information on how to achieve the standard, and relate to structure, process or outcome factors. The study of cells using a microscope. The source of evidence to demonstrate whether a standard or criterion is being met. A formal word for dead.
consent control of infection notification procedures core data set
coroners post mortem examination criterion/criteria
cytology data source
deceased
desirable (criterion/criteria) Good practice that is being achieved in some parts of the service and demonstrates levels of quality to which other providers of a similar service should strive. DHSSPS Department of Health, Social Services and Public Safety. Identification of an illness or health problem by means of its signs and symptoms. This involves ruling out other illnesses and casual factors for the symptoms. The process of determining the nature of a disorder by considering signs and symptoms. Material in the nucleus (brain of the cell) that codes what that cell will become structurally and functionally. The developing organism from human conception.
diagnosis
diagnostic
DNA Deoxyriboneucleic acid
embryo
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essential (criterion/criteria) A criterion that should be met wherever a service is provided. evaluation The study of the performance of a service (or element of treatment and care) with the aim of identifying successful and problem areas of activity. The process of systematically finding, appraising and using current research findings as the basis for clinical decisions. Relating to, or resembling, a fetus. The unborn child before the age of viable life, currently set legally as 24 weeks gestation. Governing body for medical practitioners. Website address: www.gmc-uk.org/ Standards that apply to most, if not all, clinical services. The period during which a fertilised egg develops into a baby. The glass plate used to carry material (tissue or cells), and placed on the microscope for examination. General Practitioner. Statements which help in deciding how to treat particular conditions. Guidelines relating to health and safety issued by the Health and Safety Executive and other relevant bodies. A person qualified in a health discipline. The science concerned with the study of the structure, composition and function of tissues under a microscope. Health and Personal Social Services (Northern Ireland).
evidence-based
fetal fetus
General Medical Council (GMC) generic standards
gestation
glass slide
GP guidelines
Health and Safety Guidelines
healthcare professional histology
HPSS (Northern Ireland)
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informed consent
The principle by which a patient/user is informed about the nature, purpose and likely effects of any treatment proposed, before being asked to consent to accepting it. See consent. A post mortem carried out on only part of the body, as agreed on a consent form. Patients notes; documentation of care. The structure that supports both medicine and the law in forensic medicine. An instrument used to obtain an enlarged image of small objects. The systematic process of collecting information on clinical and non-clinical performance. Monitoring may be intermittent or continuous. It may also be undertaken in relation to specific incidents of concern or to check key performance areas. A special unit where the deceased are kept until formal arrangements for post mortem examination and/or release are made. An individual who assists pathologists during post mortem examinations, which may involve taking part in the examination itself, or collecting specimens and taking notes. A term used to describe the first four weeks after birth. The general medicine of childhood. Any agent that can cause disease. The examination of organs, tissues and cells. Doctor who identifies diseases by studying cells and tissues using a microscope. A person who is receiving care or medical treatment. A person who is registered with a doctor, dentist, or other healthcare professional, and is treated by him/her when necessary. Sometimes referred to as a user.
limited post mortem
medical records medico-legal framework
microscope
monitoring
mortuary
mortuary technical officer (MTO)
neonatal
paediatric medicine pathogens pathological examination pathologist
patient
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peer review
Review of a service by those with expertise and experience in that service, either as a provider, user or carer, but who are not involved in its position in the area under review. The post mortem examination carried out on stillbirths and babies less than 28 days old. Relating to the period after death, and also a loosely used term for autopsy. The conventional first point of contact between a patient and the HPSS. This is the component of care delivered to patients outside hospitals and its typically, though by no means exclusively, delivered through general practices. Primary care services are the most frequently used of all services provided by the health service. Primary care encompasses a range of family health services provided by family doctors, dentists, pharmacists, optometrists and ophthalmic medical practitioners. A policy or strategy which defines appropriate action in specific circumstances. Also covers the adoption, by all staff, of national or local guidelines to meet local requirements in a specified way, resulting in what are known as local protocols. A speciality of population-based medicine. Improving performance and preventing problems through planned and systematic activities including documentation, training and review. Document outlining the methods and procedures to be used in setting standards and reviewing services. Scientific/objective reason for taking specific action. Remaining or left behind. The professional and advisory body overseeing education and qualifications of pathologists. Website address: www.rcpath.org/ Assessment of performance against standards by individual/clinical team/Trust providing the service to which the standards are related.
perinatal autopsy
post mortem
primary care
protocol
public health medicine quality assurance (QA)
quality assurance manual
rationale
residual Royal College of Pathologists (RCPath)
self-assessment
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Specialist Register of the General Medical Council
Since 1 January 1997 it has been a legal requirement that, in order to take up a consultant post in the health service, a doctor must be included on the specialist register. An area of medicine in which professional specialisation is required. A sample of tissue. An overall statement of desired performance. Enacted by statute; depending on statute for its authority as a statutory provision. Required by law. The birth of a baby that shows no evidence of life (heartbeat, respiration or independent movement) at any time later than 24 weeks of conception. The sudden, unexpected death of an infant less than two years old from an unidentifiable cause. Organs contain tissue, collection of cells which give organs their special function. Samples of tissue (typically small slices about a quarter of an inch thick) are usually taken during a post mortem examination for examination with a microscope. A sample of an organ embedded in paraffin for processing and examination. A piece of an organ used for pathological examination. The study of poisonous materials and their effects upon living organisms. A Trust is a public health service organisation responsible for providing a group of healthcare services for the local population. An acute hospital Trust provides hospital services. A primary care Trust delivers primary care/community health services. Mental health services (both hospital and community based) are now usually provided by primary care Trusts.
specialty
specimen standard statement statutory
stillbirth
sudden infant death syndrome (SIDS) tissue
tissue block
tissue sample
toxicology
Trust
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REFERENCES
1 Some women who have had a miscarriage or termination may not think of themselves as mothers and professionals should be careful about using this term. Discussion with the father may also often be appropriate. Lawful authorisation may flow from the Coroners duty to investigate deaths in certain circumstances. Bristol Royal Infirmary Inquiry. The report of the public enquiry into childrens heart surgery at the Bristol Royal Infirmary 1984-1995: Learning from Bristol/The Bristol Royal Infirmary Inquiry. London: The Stationary Office, 2001. (Cm. 5207(11)). HSG(92)8 and HSG(97)43 set out arrangements for bereavement services for people who die in hospital. These are available on Department of Health WebPages (www.doh.gov.uk/bereavement). (The Department of Health, Social Services and Public Safety is reviewing guidance on good practice in the provision of bereavement services. Any updates will be provided on the Departments website www.dhsspsni.gov.uk). See sections 20-23 for advice on who can give consent and a definition of next of kin. See section 63 for standard consent forms. Guidelines in autopsy practice Report of a working group of the Royal College of Pathologists, September 2002. Available at www.rcpath.org Small pieces of tissue are removed and placed in small, usually plastic, cassettes. These samples are usually less than 1cm2 in size and up to 5mm thick. (Often samples are much smaller. Samples from the brain may be larger: about 2cm2). The tissue is chemically treated to remove water, which is replaced with wax. These tissue blocks become hard, so that very thin sections can be cut from them. These sections are ten times thinner than a human hair. 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. These techniques are the same as those used to examine tissue from living patients. Larger organs such as the heart or brain may need to be fixed for some weeks before blocks and slides can be taken families need to be advised of this so that they can decide on when and how these organs are to be subsequently disposed of. Coroners legislation requires notice to be given of the date, time and place of the post mortem examination to any relative of the deceased who has asked to be informed, unless it is impracticable to do so. These may eventually be replaced by Coroners Officers.
6 7
10
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11
At present this will only apply to Coroners post mortem examinations carried out in hospital but there may be a phased implementation with the development at the Coroners Offices. All those 18 years and over are assumed competent unless proven otherwise. This may be particularly appropriate where the individual does not have a close relationship with any family members or where there has been an estrangement. Prior to April 2002 fathers only had the right to consent where they were on the birth certificate of the child and married to the mother at the time of birth, or who had been through a formal adoptive process. Nancy Kohner. Pregnancy loss and the death of a baby: guidelines for professionals. London: Stillbirth and Neonatal Death Society, 1995. For example, the National Schizophrenia Fellowship gives support to relatives of people with severe mental illness and would be available to help immediately following the death of the person they cared for. Local arrangements will apply in relation to bereavement care, but Trust policies must comply with the DHSSPS Standards for Bereavement Care Annex B Standard 6. When discussing the post mortem examination, some people will wish to know considerable detail about what will be done to the body. In such cases the procedure should be sensitively but honestly and fully explained. Others will not want so much or even any detail, which should be respected. Guidance on the making and using of visual and audio recordings of patients was prepared by the General Medical Council in 2002 and is available at www.gmc-uk.org In some cases where more detailed forensic examination is required different procedures apply. Standards for the Archive Holder and those obtaining material from the archive are given in Appendix A, NI Code of Practice. Information on Death and Bereavement is available on the government website, www.ukonline.gov.uk If the hospital does arrange the funeral, arrangements for the burial or cremation should be dignified, involving a simple ceremony if the parents wish. Burial should be in a specially designated, well-kept area: see Department of Health Welfare of Children and Young People in Hospital. London: HMSO, 1991.
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13
14
15
16
17
18
19
20
21
22
23
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24
Hospitals and next of kin should be aware that it is the executor of the estate of the deceased (if any) who has responsibility for disposal of the body, so any action must only be taken following consultation with him/her. For example formalin, commonly used as a fixative, can give an allergic disease of the lungs and is a low grade carcinogen. Early pregnancy form used where no fetus present or a fetus present of less than 12 week size (<CRL6cm). Baby form used for babies, stillbirths and fetuses of 12 weeks size and above (>CRL6cm) up to 28 days old. Child form used for children aged at least 28 days old but below 18 years of age. Adult form used for patients 18 years and over. This form is for babies, children and adults.
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26
27
28
29 30
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APPENDIX C FURTHER READING
Many organisations provide information, and a number of documents and articles have been published, which deal with bereavement, post mortem examination, and the retention and use of human tissue and organs. They include: Pregnancy loss and the death of a baby. Guidelines for Professionals (Revised Edition) Nancy Kohner and the Stillbirth and Neonatal Death Association 1995. The Fetal and Infant Post Mortem: Brief Notes for the Professional. Confidential Enquiry into Stillbirths and Death in Infancy (CESDI) 1998. Guidelines in autopsy practice Report of a working group of the Royal College of Pathologists, September 2002. Available at www.rcpath.org Tissue Blocks and Slides. Retained Organs Commission, April 2001. Guidance on Return of Organs, Tissue Blocks and Slides. Retained Organs Commission, July 2001. Human tissue and biological samples for use in research. Operational and Ethical Guidelines. Medical Research Council (Ethics Series) 2001. Making and using visual and audio recordings of patients. General Medical Council, 2002. Available at www.gmc-uk.org Reference Guide to Consent for Examination or Treatment. Department of Health. March, 2001. Available at www.doh.gov.uk/consent Good Practice in Consent. Department of Health. November, 2001. Available at www.doh.gov.uk/consent/index.htm Sensitive disposal of all fetal remains. Guidance for nurses and midwives. Royal College of Nursing, London. May, 2001. Sudden Death: Guidelines for Relatives, Professionals and Schools. June, 2003. Donnelly & Connon. Available at www.royalhospitals.org/traumaticgrief The Office of Fair Trading published a report of an inquiry into funerals in July 2001, which made recommendations about the information which should be made available about funerals, and the need to ensure sufficient consumer choice. It includes a leaflet prepared in partnership with the National Funerals College. These are all available at www.oft.gov.uk/html/rsearch/reports/oft346.htm
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Produced by: Department of Health, Social Services and Public Safety, Castle Buildings, Belfast BT4 3SQ Telephone (028) 9052 2126 Textphone: (028) 9052 7668 www.dhsspsni.gov.uk January 2004 Ref: 188/2003

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Postmortem

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POST MORTEM EXAMINATIONS

GOOD PRACTICE IN CONSENT AND THE CARE OF THE BEREAVED

Information for Relatives on Hospital Post Mortem Examinations of an Adult

Consent Form for a Hospital Post Mortem Examination of an Adult

Information for Parents on a Hospital Post Mortem Examination of a Child

Consent Form for a Hospital Post Mortem Examination of a Child

Information for Parents on a Hospital Post Mortem Examination of a Baby

Consent Form for a Hospital Post Mortem Examination of a Baby

Consent Form for a Histopathological Examination and Disposal of Early Miscarriages

Information for Relatives on a Coroners Post Mortem Examination

Form for a Coroners Post Mortem Examination

A Careplan for women who experience a Miscarriage, Stillbirth or Neonatal Death

Human Rights Issues

Scope Of The Code

Patients who are dying

Post Mortem Examination

Coroners post mortem examination

Hospital post mortem examination

WHO CAN GIVE CONSENT? Post Mortem Examination of Adults

Post Mortem Examination of Babies and Children

Discussing the Post Mortem Examination: Seeking Consent

What should the discussion cover?

Cultural traditions and language differences

Results from a Coroners Post Mortem Examination

Information about further use of tissue and organs

Maintaining Proper Documentation

Disposal of the Body, Tissue and Organs

Disposal of fetal remains or products of pregnancy loss

Later disposal of tissue and organs

Standardised Consent Forms and Information Leaflets

Training and Support for Staff

CHAPTER 2 STANDARDS FOR THE MANAGEMENT OF POST MORTEM EXAMINATIONS

Standard 1 - Pathology Practice Hospital Post Mortem Examinations Criteria Essential

Standard 1 - Pathology Practice Hospital Post Mortem Examinations Criteria Essential

Responsibility for Consent

Information for Relatives

Standard 2 - Consent and Information Criteria Essential

Standard 2 - Consent and Information Standard Statement Education

Standard 2 - Consent and Information Criteria Essential

Standard 3 Storage, Handling and Disposal Criteria Essential

Standard 3 Storage, Handling and Disposal Standard Statement Residual Tissues

Standard 3 Storage, Handling and Disposal Criteria Essential

Standard 4 - Record Keeping Standard Statement Rationale

Standard 4 - Record Keeping Criteria Essential

Standard 5 - Education Standard Statement Rationale

Standard 5 - Education Criteria Essential

Standard 6 - Bereavment Care Standard Statement Policies and Procedures

Standard 6 - Bereavment Care Criteria Essential

Standard 6 - Bereavment Care Standard Statement Training and Development

Standard 6 - Bereavment Care Criteria Essential

CHAPTER 3 INFORMATION FOR RELATIVES HOSPITAL POST MORTEM EXAMINATION OF AN ADULT

Information about an Adult's Post Mortem examination

You may contact:

on this telephone number

(please state times available)

A post mortem examination

The importance of a post mortem examination

A post mortem examination ordered by the Coroner

When is a post mortem examination done?

About a post mortem examination

Tissue samples, blocks and slides

What is residual tissue?

X-rays and other images

Your relatives body after the post mortem examination