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Consent and communication

27. Before the PM examination begins, the pathologist must check that it has been properly consented to, either by the deceased person before they died or their relatives, or authorised by the coroner. Written consent or authorisation by the coroner should be obtained wherever possible. 

28. Although consent from relatives is not required for a PM examination authorised by the coroner, it will need to be obtained for the retention of any tissue for the purposes set out in the HT Act when the coroner’s authority ceases.

29. The guidance on consent given in this code is based on some key principles:

  1. as a first step, a willingness to discuss the question of consent should be established
  2. full information about the consent process, as set out in this code, should be available in widely spoken languages and in a variety of formats, such as video or DVD, audiotape or Braille and in line with other legislation, such as the Disability Discrimination Act 1995  [www.opsi.gov.uk/acts/acts1995/ukpga_19950050_en_1].
  3. consent should be based on an understanding of what the procedure involves; this applies to those seeking consent, as well as to those giving it

30. The code of practice on Consent gives more detailed guidance on obtaining consent. It emphasises that consent should be seen as part of a process in which individuals and their relatives may discuss the issue fully, ask questions and make an informed choice.

31. Bereaved people should be treated with respect and sensitivity at all times to help them take important decisions at a difficult time. The standards expected when seeking and obtaining consent are touched on in this code, but are explored in much greater detail in the code of practice on Consent.

Discussing the post mortem with the family

32. The way in which a PM examination is discussed with the deceased person’s relatives is extremely important. They should be given:

  1. honest, clear, objective information
  2. the opportunity to talk to someone of whom they feel able to ask questions
  3. reasonable time to reach decisions (for example about the retention or donation of tissue)
  4. privacy for discussion between family members, if applicable; and
  5. emotional or psychological support if they need and want it (support may be available from an organisation with which a relative is already in touch, particularly if they have been a long-term carer of the deceased person)
  6. for hospital PM examinations, relatives should have the opportunity to change their minds, within an agreed time limit

33. Discussions should be face-to-face if possible, so that all necessary issues and questions are addressed and all parties are clear about what is agreed. A comfortable, private room should be used.

What the discussion should cover

34. Relatives should be offered full and clear information about the purpose of the PM examination, the range of choices available to them, the potential uses for any material retained and the disposal options.

35. They should be provided with factual information that may be taken away if they want it. Consideration should be given to the demographics of the local community when producing printed information. For example, there may be a need to produce information in different languages.

36. At the end of the meeting, relatives should be provided with a record of the discussion and of the agreement reached.

37. Relatives should also be provided with the name, telephone number and / or email address of a nominated person (for example, the hospital’s bereavement adviser or the coroner’s officer), so they may ask further questions later. Ready access to general information, for example via a hospital website may also be helpful to them.

38. When discussing the PM examination or retention of tissue, some relatives may wish to know in considerable detail what will be done to the body, organs or tissue. In such cases the procedure should be explained with careful use of language, but honestly and fully. Others will not want as much or even any detail, and this should be respected; however, sufficient information should be provided to ensure that valid consent is in place.

39. Whilst putting the needs of relatives first, those providing the information should aim to include the following:  

  1. a basic explanation of what happens in a PM examination, including the removal, storage and use of organs and tissue and the various purposes for which tissue might be kept
  2. if known, where and when the PM examination will take place
  3. the meaning of the term ‘tissue’, i.e. that it includes organs, parts of organs and tissue in various forms, such as frozen sections and samples held in paraffin wax after fixing and processing
  4. the benefits of a PM examination and the questions to be addressed in this case, and the reasons for the coroner’s involvement
  5. the possible outcome
  6. for hospital PM examinations, the possible alternatives to a full PM examination (making clear the limitations to these, and the benefits of a full PM examination)
  7. information about tests needed (e.g. histology, toxicology, genetic testing in paediatric cases) and whether these might cause delays to  determining the cause of death
  8. an explanation of the need for any images to be made (including photographs, slides, X-rays and CT scans)
  9. when, to whom and how the results of the investigation will be made available and explained; coroner’s PM examinations are primarily undertaken to identify the cause and circumstances of death and it should be explained to relatives that the results may be limited in scope
  10. options for what will happen to the body and any material removed (including tissue blocks and slides) after the PM examination
  11. the potential benefits of the continued storage or use of tissue and organs for scheduled purposes such as research or teaching, and the potential storage period
  12. whether there are particular uses which relatives would wish to exclude from any general consent given
  13. the timing of burial or cremation so that, where possible, any material removed can be reunited with the body if relatives so wish. This will need to be done in consultation with the pathologist, and in the case of a coroner’s PM examination, with the coroner.

40. Medical students, doctors and other healthcare professionals may witness the PM examination or a demonstration of the findings for educational purposes and to develop their professional skills. Police and paramedics may also observe as part of their training. This should be explained to the deceased person’s relatives, making it explicit that unless there is a specific request to the contrary, members of these professional groups may be present. All who witness the examination must respect the confidentiality of any information relating to the deceased person.

 

Tissue or organ donation

41. Many people, prior to their death, have made a decision to consent, or not, to organ or tissue donation. 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. For further guidance, see the code of practice on Donation of solid organs for transplantation.

42. The HT Act makes clear that where an adult made a decision to consent to organ donation taking place after their death, then that consent is sufficient for the activity to be lawful.

43. In cases of potential deceased donation, the transplant coordinator or delegated person should be approached at an early stage and asked to determine whether the deceased person had consented to donate their organs after death. This should be done before the relatives are approached. Trained staff should determine whether the deceased person had given consent for organ donation by checking relevant sources, such as the Organ Donor Register. If no records are held, an approach should be made to the deceased person’s relatives by a transplant coordinator or a member of the team who cared for the person, or both together, to establish any known decision of the deceased person to consent (or not) to donation.

44. Once it is known that the deceased person consented to donation, the matter should be discussed sensitively with their relatives. They should be encouraged to recognise the wishes of their relative and it should be made clear, if necessary, that they do not have the legal right to veto or overrule the deceased person’s wishes. There may nevertheless be cases in which donation is considered inappropriate and each case should be assessed individually.

45. Organ retrieval will take place before a PM examination, whereas tissue retrieval may take place prior to or following a PM examination, depending on the tissues involved and any time restraints. However, to avoid contamination of the tissue to be donated for transplantation, it is preferable for the retrieval to precede the PM examination.

46. Where organ or tissue retrieval is a possibility (and it should be made clear that where this involves tissue rather than whole organs, the tissue will be stored until it may be used), the person talking to the relatives should make early contact with the local transplant coordinator for advice, as outlined in paragraph 43 above. In addition, there should be documented arrangements for access to mortuary premises by tissue retrieval teams.

47. Authorisation from the coroner will be required in addition to consent from the relatives if the coroner is investigating the reason for the deceased’s death.

48. For guidance on arrangements between coroners and transplant coordinators on taking steps for organ preservation, see the code of practice on Donation of solid organs for transplantation.

49. The procurement of tissue for human application is governed by the requirements of the Q&S Regulations. Procurement may only be undertaken under the authority of a licence from the HTA or a third party agreement instigated by a licensed establishment. Further information on the Q&S Regulations and their impact on mortuaries where tissue retrieval takes place is available on the HTA’s website [www.hta.gov.uk/guidance/licensing_guidance.cfm].

Training and support for staff

50. All staff involved with seeking consent should be trained in how to obtain consent and the establishment should hold training records to demonstrate this.

51. Training and support should be offered to others involved with liaising with relatives, such as coroners’ officers and APTs. Training should ensure that they have sufficient knowledge of bereavement management and the procedures involved in the PM examination, as well as the statutory framework of the HT Act.

Example – Establishments seeking to develop training might consider a web-based training module for staff. By working through the relevant sections of the HT Act and the code of practice they can ensure that the key issues are covered. The module might include sections on what constitutes appropriate and valid consent, who is able to seek consent and also give it (i.e. those in 'qualifying' relationships), cultural / religious considerations, the provision of information about the PM examination itself and the retention, storage and disposal of material, and what is documented and where. It might also reference the HT Act so that people know obtaining valid consent is a legal requirement, not just good practice.

52. The development of local joint protocols between healthcare establishments and their coroner/s may provide opportunities for considering training needs and development opportunities in liaison with other relevant bodies such as the police, local authority and Local Safeguarding Children Boards.

Religion, culture and language

53. Attitudes towards PM examination, in particular the removal of organs and tissue and the use of tissue after death, differ greatly. Consent should always be sought and discussed according to the individual requirements of the family.  For example, for religious or other reasons, a funeral may be required to take place as soon as possible; the implications of this should be discussed sensitively and openly, with every effort made to meet the family’s requirements without compromising the clinical outcome. If the outcome is likely to be compromised, an explanation of how and why will be required.

Communication

54. Consent is valid only if proper communication has taken place. Particular consideration should be given to the needs of individuals and families whose first language is not English. Any difficulties in communicating with the person interviewed (e.g. because of language, literacy or hearing difficulties), and an explanation of how these difficulties were overcome (e.g. through an independent translator), should be recorded.

55. Trusts and coroners’ services should ensure that staff are given the necessary training and support to identify and meet the widest possible range of needs and wishes. Bereaved relatives may not always know what is traditional or customary within the community when a death occurs and may wish for time to talk to other family and community members. However, each case and decision is an individual and personal one, and should be treated as such.