An unnatural death. A report into investigations of mesothelioma death and their impact on bereaved families

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1 An unnatural death A report into investigations of mesothelioma death and their impact on bereaved families

2 Contents p.3p.3executive summary p.4p.3background p.5p.3the impact on bereaved families p.6p.3 Case study: Chris Knighton p.7 p.3 Survey methodology p.8p.3 p.10p.3 p.10p.3 p.12p.3 Coroners survey findings Police survey findings Learning from the Scottish example Conclusions p.12p.3..recommendations p.15 The Action Mesothelioma campaign p.16 The British Lung Foundation

3 Executive summary Mesothelioma is a cancer of the lining of the lung or abdomen most often caused by exposure to asbestos. It is a slow growing cancer whose symptoms can appear 40 or so years after exposure took place. As yet there is no cure for the disease. Most people die a painful death within 18 months of diagnosis. In the UK we are heading for an epidemic of mesothelioma as people exposed to asbestos in the 1960s and 1970s, when asbestos was often used in many industries, are now becoming ill and dying. In ,739 people died of mesothelioma in the UK. Numbers are expected to peak in Deaths thought to be due to mesothelioma or other asbestosrelated diseases are regarded as an 'unnatural death' and there are often compensation issues involved. These deaths must be referred to the local coroner who carries out an investigation into the death, even though a diagnosis of mesothelioma may have been confirmed months earlier and a terminal diagnosis given. Anecdotal evidence from bereaved families is that this formal investigation constitutes a distressing chain of events at an extremely difficult time, sometimes beginning with a visit from uniformed police officers shortly after their loved one has died, sometimes in the middle of the night. The families say they feel as if they are under criminal investigation. As a result of concerns raised by families, the British Lung Foundation conducted a survey of all 93 coroners and Procurators Fiscal in the UK and all 51 Police Forces in the UK into the procedures used following a death from mesothelioma. The key findings from the survey were: It is clear that there is no consistent practice for responding to a mesothelioma death. This 'postcode lottery' is likely to be the result of differences in the staffing and resources available to coroners in different areas More than a third of coroners (41%) do not have provision for a coroner's officer at night or the weekend, necessitating a visit from the police to the bereaved family if mesothelioma deaths occur at those times 3

4 More than a quarter of coroners (27%) say that police officers in uniform and in marked police cars have been sent to interview a family bereaved by mesothelioma Most coroners (92%) ask relatives to provide formal identification of the body of the deceased Fifty three per cent of coroners expressed a willingness to consider a change of practice to remove the need for identification to be made by a family member. In order to make the necessary procedures more sensitive to the needs of the relatives left behind, the British Lung Foundation recommends that: Consistent practice for procedures following a mesothelioma death should be implemented across the UK Investigation of employment history, asbestos exposure and necessary details should be taken by a healthcare professional shortly following diagnosis, to be provided to the coroner following death The Department of Constitutional Affairs, with the Coroners Society, should investigate ways of removing the need for uniformed police officers to visit relatives bereaved by mesothelioma shortly after the death, particularly where the death occurs out of hours, and amend current procedures accordingly Provision should be made within coroners procedures for an inquest to be opened on the recommendation of the doctor attending a mesothelioma death in order that coroners investigations do not have to be carried out immediately. This would remove the need for police officers to be sent to interview families within hours of their bereavement If police officers still have to be sent to interview families a few days later, they should arrange to arrive in plain clothes and in unmarked cars An explanation of the coroners procedures should be provided to people with mesothelioma and their families. 4

5 Background Because deaths from mesothelioma are considered unnatural deaths, a doctor called to a family home or hospital to issue a death certificate is obliged to report the death to the local coroner immediately. A formal investigation into the death then begins. The coroner needs to speak to the family to answer four key questions: 1. Who has died? 2. When did s/he die? 3. Where did s/he die? 4. Most importantly, how did s/he die, i.e. the cause of death. A 4. police officer often fills the role of the coroner's officer and vis 4. its the family. The officer will also question the family about the 4. employment history of the deceased. This investigation takes place soon after the death has occurred in order that an inquest can be opened straight away. An interim death certificate, which allows the family to process the estate, cannot be issued until the inquest has been opened. In many cases the coroner will also conduct a post mortem on the deceased to confirm the cause of death. Any delay in this taking place lengthens the time the family have to wait to hold a funeral. The coroner must hold an inquest to determine both the cause of death and whether it was due to occupational asbestos exposure or a naturally occurring disease process. The impact on bereaved families Anecdotal evidence from bereaved families is that this formal investigation constitutes a distressing chain of events at an extremely difficult time. Families report receiving a visit from uniformed police officers shortly after their loved one has died, sometimes in the middle of the night. A formal identification of the body is often required and families say they feel that they are under suspicion of a crime. What then follows is often a long wait for an inquest into the death. For the families concerned, this adds enormously to their pain and loss. 5

6 Case study - Chris Knighton Chris Knighton's husband Mick died from mesothelioma in March 2001, aged 60, seven months after being diagnosed with the disease and 30 years after he left the Royal Navy where he was exposed to asbestos. He died at home, at 2.15am with Chris by his side. "Within a few hours of my husband Mick passing away from mesothelioma, two uniformed police officers arrived on the door-step, leaving their marked police car parked outside. We were not expecting the police to visit and their arrival was a complete shock. "This was a very private and hugely distressing moment for me and for the family and this police presence felt like an invasion of our grief. "It was a very uncomfortable situation and I felt that the officers concerned felt awkward and didn't want to be there. They had to take a statement of the circumstances surrounding Mick's death and his employment history relating to his asbestos exposure. At the time, this information did not seem so important that it had to be collected there and then, it would have been much better if this could have been given by Mick himself before he died, or a couple of days later when the shock of his passing had eased. "Watching a loved one die is a hugely distressing experience and I would welcome any small changes that could make the procedures followed by the authorities more sympathetic to the relatives left behind. "This experience would have been much easier for me if I had been aware that the police would visit and if they had arrived in plain clothes and an unmarked car. It would also help if officers had some training on mesothelioma so they have a better understanding of the situation they are entering and, finally, it would be much easier if employment history and other relevant information could be shared prior to or a few days after a person's passing so as not to further burden the relatives at such a sensitive time." 6

7 In response to the concerns raised by Chris Knighton and other families bereaved by mesothelioma, the British Lung Foundation conducted a survey of coroners offices, (Procurator Fiscal offices in Scotland) and Police Forces across the UK. We wanted to identify current practice regarding the procedures following a mesothelioma death; determine whether there are any geographical variations in the type of procedure used; and consider whether there are more appropriate or sympathetic ways to handle such a situation. We also wanted to determine how long it currently takes for cause of death to be established. Survey methodology The British Lung Foundation surveyed all 93 coroners and Procurators Fiscal in the UK. There are 74 coroners offices in England, seven in Wales, one in Northern Ireland and 11 Procurator Fiscal offices in Scotland. Responses were received from 46 coroners offices in England, four in Wales and one in Northern Ireland - a response rate of 54 per cent. No individual Procurator Fiscal offices responded to the survey. A letter, however, was received from the Principal Procurator Fiscal Depute at the Crown Office. This letter explained that Procurators Fiscal in Scotland have access to guidance on mesothelioma deaths and it was felt that one letter from the Principal Procurator Fiscal Depute explaining the procedure would be more helpful than individual responses from all the Procurator Fiscal offices. A separate survey was sent to all 51 police forces in the UK. There are 38 police forces in England, four in Wales, one in Northern Ireland and eight in Scotland. Responses were received from seven police forces in England and two police forces in Scotland - a response rate of 17 per cent. No responses were received from police forces in Wales or Northern Ireland. A freepost reply envelope was provided with all questionnaires and recipients were asked to respond within a five week deadline. Thanks to Jo Yarker and Jo Lloyd from the Department of Psychology at Goldsmiths, University of London, for analysing and interpreting the survey responses. 7

8 Coroners survey - findings 1. Use of uniformed police officers Twenty-seven per cent of coroners in England, Wales and Northern Ireland occasionally or always send uniformed police officers in marked police cars to interview the relatives after a mesothelioma death is reported. Use of uniformed police in this way can depend on the resources available in each area - for example whether plain clothed officers are available - or it may not be within the authority of the coroner to specify that plainclothed officers should be used. 2. Out-of-hours provision Forty-one per cent of coroners in England, Wales and Northern Ireland do not have provision for a coroner's officer at night and the weekend. The majority of respondents indicated that investigations are not conducted at night, but in some circumstances, such as when the death occurs at night, this is unavoidable as it is deemed that the investigation needs to begin immediately in order that an inquest be opened. 3. Identification of the deceased Relatives are asked to identify the body following a mesothelioma death in the majority of cases. This is not legally necessary but is often preferable as medical professionals may be reluctant or unable to make a positive identification or relatives may want to make the identification, particularly if the death occurred at home. Fifty-three per cent of coroners expressed a willingness to consider a change of practice to remove the need for identification to be made by a family member. 8

9 4. Training for officers In many areas specialist training about mesothelioma is not provided to police or coroner's officers but 33 per cent of respondents say they are willing to consider introducing this. 5. Inquest The average time from a mesothelioma death to inquest is two to three months, with some inquests taking up to a year to conclude. Thirty-seven per cent of coroners do not think it is currently possible to conclude an inquest within one month of the death. They say delays are due to the time it takes to obtain the scientific results on histology and fibre count which confirms the death was from mesothelioma, and a lack of resources. Inquests for mesothelioma deaths are not mandatory in Northern Ireland. 6. Investigation prior to death Ninety-two per cent of coroners in England, Wales and Northern Ireland do not conduct any investigation with patients or families prior to death and only three per cent would consider changing this practice as legally a coroner has no jurisdiction until a death has occurred. 9

10 Police survey findings 1. Use of uniformed officers The survey suggests that the use of marked police cars and uniformed officers is dependent on police resources although the use of unmarked cars and plain clothed officers is preferred where possible. 2. Training for officers Police officers are not given specific training in mesothelioma prior to attending mesothelioma deaths and there was little willingness to do so due to limited resources and a perception that it is unrealistic to provide training on every medical condition. While it was recognised that dealing with deaths from mesothelioma constitutes only a very small proportion of a police officer's load, some form of training or support is required to equip police officers with the skills and knowledge to manage this situation effectively and empathetically. Learning from the Scottish example Different procedures are in place in Scotland where suspicious and sudden deaths are reported to the local Procurator Fiscal. The Procurator Fiscal works to national guidelines, Death and the Procurator Fiscal 1998, which cover asbestosis, mesothelioma and asbestos-related lung cancer and regulations laid down in Chapter 12 of the Procurator Fiscal Book of Regulations. These regulations provide that if a mesothelioma diagnosis is confirmed prior to death a post-mortem may not be necessary, the relatives of the deceased do not have to attend the mortuary to make formal identification and a report of the deceased's 10

11 employment record can be compiled from medical records wherever possible. The role of the Procurator Fiscal is to ensure that the cause of death does not represent a continuing danger to people other than the deceased. It is their job to determine the source of the disease and inform the Health and Safety Executive if the threat is still current. Where the mesothelioma has been diagnosed from a biopsy in life, the cause of death is accepted as certified by the doctor and a post mortem may not be necessary. In most cases the information required by the Procurator Fiscal can be collected from medical records where this information was supplied by the deceased in life. If this is not available, alternative sources for the information are sought. It is only necessary for the police to question the relatives as a last resort if the information cannot be obtained elsewhere, and in these circumstances this interview will take place at a later stage as relatives cannot be expected to remember such detailed information at a distressing time. Where a death occurs at home, and it is expected as the mesothelioma was diagnosed in life, the doctor will make arrangements for the body to be taken to the undertakers or for a post mortem if this is deemed necessary. It is unlikely that the police would attend at this time but if they did, officers would be more likely to collect information from the doctor than the family at this stage. We suggest that these provisions are more sensitive to the needs of those left behind. We acknowledge that Procurator Fiscal officers are operating under a different remit and legal system to coroner s officers and therefore direct comparisons are not appropriate. However it is suggested that some small changes in coroner's procedures may make them more timely and sensitive to the emotions of bereaved families. 11

12 Conclusions It is clear that there is no consistent practice for responding to a mesothelioma death. This 'postcode lottery' is likely to be the result of differences in the staffing and resources available to coroners in different areas The survey bears out anecdotal evidence from bereaved families that coroners are sometimes required to use police officers to attend the scene of a mesothelioma death, and that a considerable number of these visits are by uniformed police officers in marked cars Although the use of unmarked cars and plain-clothed officers is preferable the survey suggests that the use of marked police cars and uniformed officers is dependent on police resources There seems to be no clear reason, other than that it is established procedure, that police officers need to be sent to investigate a mesothelioma death within hours of death occurring There is some willingness on behalf of coroners to change current practices, and to provide education for police officers on the issue of mesothelioma. Recommendations 1. National Guidelines It is recommended that national guidelines for England, Wales and Northern Ireland are developed to ensure that consistent, best practice, procedures for investigations of a mesothelioma death are followed country-wide. In order to achieve this, a review of coroner's resources may be necessary as these vary from area to area. 2. Occupational history It is recommended that following a mesothelioma diagnosis, healthcare professionals should take an occupational/employment history from the patient to identify asbestos exposure. This information should meet the needs of the coroner and be passed on following the death. This would reduce the burden on 12

13 relatives who may be distressed or unable to provide this information after the death has occurred. However, relatives should always be given the opportunity to contribute to the coroner's inquiries if they wish to do so. 3. Coroners procedures The Department of Constitutional Affairs, with the Coroners Society, should investigate ways of removing the need for uniformed police officers to visit relatives bereaved by mesothelioma shortly after the death, particularly where the death occurs out of hours, and amend current procedures accordingly. 4. Interim death certificate Provision should be made within coroners procedures for mesothelioma deaths for an interim death certificate to be issued and an inquest to be opened, on the recommendation of the doctor, in order that coroners investigations do not have to be carried out immediately. This would remove the need for police officers to interview families within hours of their bereavement. If police officers still have to be sent to interview families a few days later, they should arrange to arrive in plain clothes and in unmarked cars. 5. Identification Relatives should be given the option of not identifying the body as many may find this distressing and prefer not to. A suitable alternative, such as a healthcare professional, should be able to perfom this function if necessary. 4. Training Specialist training should be provided to police and coroner's officers in areas of high mesothelioma incidence to increase their understanding of the nature of the disease in order that their response is as sympathetic to the needs of bereaved families as possible. 13

14 5. Fibre count A review of procedures for obtaining a fibre count from a specialist centre, where it is not possible to determine this adequately locally, should be conducted to identify whether improvements can be made to hasten this process in order to conclude an inquest as soon as possible after death and allow the family some closure. 6. Information for relatives Relatives of people with mesothelioma should be informed about the need for the coroner's investigation following a mesothelioma death and the procedure explained to them. 14

15 The Action Mesothelioma campaign The British Lung Foundation launched the Action Mesothelioma campaign in response to increasing concern about this asbestos-related cancer. The campaign brings together healthcare professionals, asbestos support groups, charitable trusts and bereaved families who have been affected by the disease. The first Action Mesothelioma Day was held on 27 February 2006 and was marked across the UK with national and regional events including a parliamentary reception and the presentation of the Mesothelioma Charter to 10 Downing Street with more than 14,000 signatures. The campaign asks the Government to consider the 15 points raised in the Mesothelioma Charter, undertake to make mesothelioma a national priority area and do all it can to ensure people with the disease have access to the best possible diagnosis, treatment, care and support. 15

16 The British Lung Foundation One person in seven in the UK is affected by a lung disease. Whether it's mild asthma or lung cancer, the British Lung Foundation is here for every one of them. This is what we do: We support people affected by lung disease through the individual challenges they will face. Support is the focus of many of our activities, including Breathe Easy, our nationwide support network and Baby Breathe Easy, our parent support groups. We help people to understand their condition. We do this by providing comprehensive and clear information on paper, on the web and on the telephone. And we work for positive change in lung health. We do this by campaigning, raising awareness and funding world-class research Goswell Road London EC1V 7ER t: e: w: Published February 2007 British Lung Foundation 2007 Reg. charity no

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