Thematic report on organ retention

6.1 The public's attitude to death and the care of the deceased's body after death has evolved, reflecting cultural diversity and an expectation of being involved and consulted in all important decisions regarding their relatives.

6.2 Bereaved relatives need to be given information in language they can understand, by people they have confidence in, and to be assured that their wishes will be taken into account.

Equality Act 2010

6.3 In terms of the Equality Act 2010, COPFS is subject to the public sector equality duty ('the general duty'). The general duty requires COPFS to have 'due regard' to the need to:

(a) Eliminate discrimination, harassment, victimisation and other conduct prohibited by the Act.

(b) Advance equality of opportunity between people who share a relevant 'protected characteristic^[42]' and those who do not.

(c) Foster good relations between people who share a relevant 'protected characteristic' and those who do not.

6.4 In a report published by COPFS in 2013^[43] the Crown Agent stated:

"The public interest is at the heart of all we do…We take into account the diverse needs of…communities. We are concerned not only with the fulfillment of statutory duties but also the promotion of best practice in service provision."

6.5 The report emphasised COPFS commitment "to treating all individuals, including those with protected characteristics, with sensitivity, dignity and respect".

6.6 In furtherance of the needs set out in the general equality duty, COPFS has developed a number of equality outcomes^[44] to underpin its mainstreaming of equality in 2013 to 2017. These include among others:

• Improving COPFS understanding of the different needs of people with 'protected characteristics' and providing a service suited to their needs.
• Ensuring COPFS services are accessible to all whatever their needs by making premises accessible and providing appropriate means of communication.
• Ensuring COPFS staff are knowledgeable about people with protected characteristics so that their needs are considered and they are treated with respect.

Equality and Diversity

6.7 Equality must be integral to all COPFS functions, including the investigation of deaths, so that services meet users' needs and are accessible to all. In relation to the investigation of deaths and, in particular, post-mortem examination and retention of organs, COPFS has established policies and practices designed to meet the goal of accommodating the diverse needs of service users.

6.8 There is a wealth of information on equality and diversity issues available to staff on the Knowledge Bank on the COPFS Intranet and, to improve access and communication for all users of its services, COPFS has provided a range of aids and facilities. The main guidance manuals of specific interest to the investigation of deaths and the aids and measures available to facilitate individual needs are outlined at Annex D.

Liaison with Bereaved Relatives

6.9 The Procurator Fiscal is responsible for liaising with bereaved relatives in all deaths and keeping them updated on the progress of the investigation in accordance with carrying out a proper investigation. In particular, nearest relatives should be alerted as soon as possible if organ retention appears likely to occur. In such cases, where compatible with the proper conduct of the investigation, the nearest relatives are entitled to an explanation on the nature and purpose of the retention, the type of organ retained and the likely duration of the retention, and their views on the disposal of the organ must be canvassed.

6.10 In all death reports submitted to the Procurator Fiscal, the police should include information on cultural and religious issues which may have an impact on how the investigation is progressed and how the communication and accessibility needs of nearest relatives can be met.

6.11 While COPFS guidance acknowledges that it may not always be possible to satisfy the wishes of relatives if a post-mortem is required in the public interest, it stresses that all reasonable efforts should be made to identify any religious or cultural issues and to accommodate the nearest relatives' wishes if this does not compromise a proper investigation. It emphasises the distress that is caused to certain faith groups if there is a delay prior to burial and that for some faith groups a post-mortem examination is only acceptable if required by law and if the body is buried intact.

Publications

6.12 COPFS has published information booklets and leaflets for bereaved relatives. A recently revised booklet entitled 'Information for Bereaved Relatives - The Role of the Procurator Fiscal in the Investigation of Death' can be accessed on the COPFS public website. Various national groups and the Equality Advisory Group (EAG) ^[45] were consulted on the content of the booklet. It is aimed at helping relatives to understand the function of the Procurator Fiscal and what is involved in the investigation of various categories of death. It explains in straightforward terms the legal issues and refers bereaved relatives to other external publications which may assist them where, for example, the death is due to homicide or a road traffic accident^[46].

6.13 The booklet provides advice about dealing with matters such as registering the death certificate and provides contact details for agencies that offer support to bereaved families.

6.14 There are a number of translated versions available online and others are available on request. There is also an 'Easy Read' version for those with learning difficulties. The booklet is available in electronic format only to allow changes to be made easily if required. This avoids the additional cost of having to discard out-of-date printed copies. Letters sent to bereaved relatives refer to the booklet and advise that it can be made available in hard copy format on request.

6.15 Bereaved relatives can also access VIA leaflets online. One leaflet provides advice to bereaved relatives in crime related deaths and another leaflet, 'How We Can Help You', explains the VIA service and how VIA can help bereaved relatives where there is to be a FAI or extensive investigation. Both leaflets are available in electronic format on the COPFS website and hard copy versions can be made available on request.

6.16 In addition there is online a booklet entitled 'Death and the Procurator Fiscal - Information and Guidance for Medical Practitioners'. This is intended to offer advice to doctors on whether a death needs to be reported to the Procurator Fiscal although bereaved relatives may also find it informative.

Liaison in Non-Suspicious Deaths

6.17 All deaths reported to COPFS where there is no suspected criminality are dealt with by SFIU. There are some categories of death such as suicide, a death arising from a road traffic collision or where a FAI may be held where COPFS policy is that the nearest relatives should automatically be offered a meeting. The purpose of the meeting is to explain the role of the Procurator Fiscal and the Victim Information and Advice service, to provide information on the circumstances of the death and to assist with any queries face-to-face. In such cases there will normally be VIA involvement. The role of VIA is to keep relatives informed about the progress of the death investigation and to provide contact information about agencies able to offer advice and support.

6.18 It is recognised that paediatric post-mortem examinations give rise to particular sensitivities. The Scottish Cot Death Trust^[47] (SCDT) emphasised the importance of ascertaining how a family wants to receive information. From their experience, they advised that the preference is usually for the initial contact to be made personally by telephone followed by a letter. Early and personal contact provides reassurance that the Procurator Fiscal is approachable although in some cases it may be preferable for the Procurator Fiscal to liaise with the family through someone who has already formed a relationship with them such as a General Practitioner or their undertaker.

6.19 SCDT cautioned against the use of 'legalese' in correspondence and stressed the need to use sensitive language and avoid using terms such as 'the case'. It commented favourably on the content of letters issued following the Deaths Conference held by COPFS in October 2013 which sought input from agencies such as SCDT and the Scottish Association for Mental Health (SAMH). SCDT also provided positive feedback on the service provided by SFIU commenting that it provided greater certainty on whom to contact. It also found the staff in SFIU approachable and that they responded to queries in a timeous, knowledgeable and helpful manner.

6.20 The only concern expressed was that families may have to travel some distance to where the Fatalities Unit is based. However, SFIU confirmed that their staff are happy to facilitate meetings at other Procurator Fiscal offices, where appropriate.

Liaison in Suspicious Deaths

6.21 There is a Joint Protocol between Police Scotland and COPFS regarding family liaison to provide information and support to bereaved relatives during certain investigations which may lead to criminal or other proceedings.

6.22 Following any death where criminality is suspected, the police will normally appoint a Family Liaison Officer (FLO). These are police officers with special training in investigation and communication. Their primary role is as a police investigator but they also provide a critical conduit to obtain relevant family information including whether there are any religious or cultural sensitivities or any other equality issues. They provide a direct line of communication between the families of victims and the police and are often best placed to provide updates on the investigation and contact details of support agencies. The FLO liaises with the Procurator Fiscal on such matters as post‑mortem arrangements and the release of the deceased's body to the family. If the body cannot be released in compliance with the wishes of the nearest relatives then the Procurator Fiscal will advise the FLO of the reasons so that this can be shared with the family.

6.23 While the Joint Protocol does not specifically mention organ retention, it is common practice for the FLO to keep the nearest relatives advised if it is likely that an organ will have to be retained although the Procurator Fiscal will always be available to provide further details on the reason for any retention and timescales.

6.24 At an agreed time, responsibility for liaising with the nearest relatives will transfer from the FLO to a COPFS Victim Information and Advice (VIA) officer attached to the homicide or high court team. A meeting is offered to the nearest relatives in any case where there is likely to be a prosecution if, for example, the death has resulted from a road traffic incident. This is done by an official handover meeting with the family, FLO and VIA.

Information Portal

One recent innovation by COPFS relates to the availability of an information portal on the COPFS website for bereaved relatives of those that died in a helicopter accident involving multiple fatalities. The website is updated with information about the ongoing enquiry and can be accessed via a unique password. This enables COPFS to keep families informed and to allow them access to information when they choose. The booklet for bereaved families is available on the portal. This is an excellent and innovative application of technology aimed at providing up-to-date information in a readily accessible format to a large number of relatives. The use of the portal is designed to ensure that consistent and accurate information is provided to all simultaneously. At an appropriate time, the use of the portal should be evaluated to ascertain if it achieved these objectives and if the nearest relatives' experience has been positive. If so, we would encourage the use of such portals for any major incidents involving multiple fatalities.

Notification of the Retention of an Organ

6.25 Nearest relatives must be informed at the earliest possible time if an organ has to be retained for further investigation.

6.26 We found within the three Fatalities Units different means of communicating with nearest relatives. In the East and West, the initial contact to discuss retention of an organ is usually made through personal contact by a senior member of legal staff. In the North, contact may be made by a member of SFIU but it is also common to communicate through the family undertakers who have established a relationship with the family on the understanding that the nearest relatives can contact the SFIU, if they so wish.

6.27 While there are variations on the means of communication with bereaved relatives across the country depending on the circumstances, the essential requirements are that the information provided is timeous, sensitive and appropriate to meet the needs of the bereaved relatives and that in all cases a contact point within SFIU is provided to the nearest relative.

6.28 Similarly, while it is entirely appropriate for correspondence to be personalised to reflect the specific and different circumstances of each case, it should contain the same information content and reflect similar language.

6.29 Organisations who work with the bereaved advocate that contact with relatives is best done personally, whether through the police, funeral director, doctor or social worker. It is essential that nearest relatives should be contacted as early as possible on any issue relating to organ retention so they can make a decision about appropriate funeral arrangements. This is particularly significant for relatives with religious or cultural affiliations as delay in providing such information can cause distress.

6.30 While it is appropriate for SFIU to assess who is best placed to initially contact the nearest relatives to advise that an organ has been retained, it is the responsibility of SFIU to follow up any such communication in writing.

Disposal Options

6.31 In the few cases where an organ may be retained following the deceased's body being released, it is incumbent on COPFS to seek the views of the nearest relatives on the disposal of the organ after the further examination has been completed. Procurators Fiscal are advised to ensure that nearest relatives are informed of the options that are available. The options being:

• disposal by pathologist
• separate burial/cremation
• delaying the funeral
• authorisation for retention for medical research

6.32 Disposal should be in accordance with any reasonable wishes of the nearest relatives. One area highlighted by pathologists is that information on the families' wishes is often communicated by phone or email. To ensure there is an appropriate audit trial, this information should be provided in writing.

Recommendation 9

All communication on the wishes of the nearest relatives should be provided in writing to the pathologist who should acknowledge receipt. The written instruction and the receipt should be retained in the electronic death file.

6.33 Some relatives may not wish to engage in a discussion on the disposal of the organ. In such circumstances, COPFS should ensure that the relatives are provided with a contact point in case they wish to seek information at a later date. The identification of cases in the COPFS audit where organs had not been disposed of due to a lack of engagement or instruction from the nearest relatives, highlighted that there was no procedure or policy to deal with such cases. In such circumstances, efforts should be made to ensure that the nearest relatives have an informed understanding of their options but if they choose not to engage with COPFS then there should be a cut-off point beyond which any organs retained are disposed of by the pathologist.

6.34 In some cases, tracing nearest relatives has proved problematic. In such cases, if after undertaking all reasonable inquiries, COPFS is unable to trace any nearest relatives, the Procurator Fiscal should instruct the pathologist to dispose of the organ.

Recommendation 10

If nearest relatives fail to engage on the disposal of an organ, COPFS should arrange for a second communication, either in person if there is an established rapport, or by recorded delivery of correspondence seeking their instruction. This second communication should advise that COPFS will arrange for the pathologist to dispose of the organ if the nearest relatives fail to engage or provide an instruction on their wishes within a specified period of time.

If, after undertaking all reasonable inquiries, COPFS is unable to trace any nearest relatives, the Procurator Fiscal should instruct the pathologist to dispose of the organ.