A Very Public Death. Final Report. Dying of mesothelioma and asbestos-related lung cancer in the Latrobe Valley. Dr Susan Lee

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1 A Very Public Death Dying of mesothelioma and asbestos-related lung cancer in the Latrobe Valley. Final Report Dr Susan Lee Professor Margaret O Connor AM, Professor Karen Francis Associate Professor Ysanne Chapman Professor John Humphreys, School of Rural Health Ms Vicki Hamilton, Gippsland Asbestos-Related Disease Support Inc Ms Barbara Cass Palliative Care Research Team School of Nursing and Midwifery, Monash University Faculty of Medicine, Nursing and Health Sciences, Frankston, VIC 3199 ISBN:

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3 Executive Summary Title A very public death - dying of mesothelioma & asbestos-related lung cancer in the Latrobe Valley. Authors Dr Susan Lee, Professor Margaret O Connor, Professor Karen Francis, Associate Professor Ysanne Chapman, Professor John Humphreys, Ms Vicki Hamilton and Ms Barbara-Anne Cass Background It is anticipated that cases of mesothelioma will continue to rise significantly over the next fifteen years with power station workers having a risk second only to asbestos mill workers. People with mesothelioma and asbestosrelated lung cancer (M/ARLC) often have had past experience of close family, friends and colleagues dying of the same disease. Mesothelioma responds poorly to treatment and is always fatal, yet there have been few studies related to the palliative care needs of this diagnostic group and none focussing on the Latrobe Valley. Design The study was a descriptive exploratory case study, undertaken to highlight the needs of people dying of mesothelioma and their families in the Latrobe Valley. Data included in-depth interviews with 13 people; those suffering from M/ARLC, carers and stakeholders. In addition, media reports, local authority and employer reports and historical data were content analysed. Data analysis used the constant comparative method to identify common themes and issues. i

4 Key Findings The findings indicate that those with M/ARLC and their families find diagnosis and treatment phase of the illness is filled with unpredictability and fear. Although there are some cancer treatment and legal services locally, people with M/ARLC are often required to travel to metropolitan services for care and advice. They have a strong desire to die at home but their care is often complicated by issues of rurality, isolation and late referral to palliative care services. Recommendations Investigate innovative models of care to improve communication and continuity of care Secure funding for continuity of psychological support Investigate barriers and enablers to local health and legal service provision Comprehensive education strategy for health providers and public Develop strategies to prevent and manage volunteer and professional burnout ii

5 Reference Group The researchers from Monash University: Dr Susan Lee Professor Margaret O Connor Professor Karen Francis Associate Professor Ysanne Chapman Professor John Humphreys Representative of Gippsland Asbestos Related Diseases Support Inc. Ms Vicki Hamilton Research Assistant: Ms Barbara-Anne Cass Community Representative: Ms Dorothy Roberts iii

6 Acknowledgements The authors acknowledge the contribution of the people with Mesothelioma or Asbestos related Lung Cancer and their family members who contributed their precious time, energy and reflections to this study. Many wanted to ensure that they made things better for others in the future and we take the responsibility of ensuring their voices are heard seriously. In addition, we thank those stakeholders who also provided their insights while in roles that are already time pressured. We valued their experience and ideas about the issues of working in this challenging area. Grateful thanks to Julie Grant for her comments during data analysis We also valued the input and guidance of the reference group, particularly Ms Vicki Hamilton and Ms Dorothy Roberts whose passion and commitment to improving the care of people with Asbestos related disease and their families is inspiring. Funded by a Monash University, Faculty of Medicine Nursing and Health Sciences, School of Nursing and Midwifery initiatives grant in iv

7 Table of Contents Executive Summary... i Reference Group... iii Acknowledgements... iv Table of Contents... v 1. Introduction Study aims Literature review Study context Methods Design The sample Data Collection Data Analysis Results Illness experience Diagnosis and prognosis Unpredictability Treatment Fear and Ignorance Independence and Privacy Awareness and Acceptance Accessing information Compensation and justice Carer and family roles Care for the carers Knowledge and risks Services and service gaps Gaps in services Specific roles Bereavement services v

8 5.4.3 Rural location Summary of results Discussion and conclusions Overview Experience of mesothelioma and asbestos related lung cancer Unpredictability Unpredictability and health professional availability Unpredictability disease and treatment Unpredictability and access to palliative care Carers and family life Recommendations Limitations of the study Conclusions Glossary References Appendices Appendix A Gippsland and the Latrobe Valley Appendix B Advertisement for sufferers/carers Appendix C Explanatory Statement for people with M/ARLC Appendix D Explanatory Statement for carers Appendix E Explanatory Statement: key stakeholders Appendix F Consent Form for all participants Appendix G Interview Guide for carers of people with M/ARLC Appendix H Interview Guide for stakeholders vi

9 1. Introduction Asbestos was used extensively from the 1800s in industrial applications because of its unique properties flexibility, tensile strength, insulation (from heat and electricity) and chemical inertness (The Australian Lung Foundation, 2000). Despite its usefulness, workers in the asbestos industry were reported to be dying of respiratory diseases as early as the 1900s. However it was many years before the publicity surrounding asbestos and the risk to workers, resulted in its removal from industry. The fine fibres associated with asbestos have the capacity to be inhaled by people and may not be removed or inactivated by the body s normal protective mechanisms. Asbestos related lung disease can take many years to develop following exposure and can manifest benign or malignant forms (The Australian Lung Foundation, 2000). Mesothelioma is a cancer of the cells lining the lungs and abdominal cavity. It has been strongly linked to asbestos, is poorly responsive to treatment and is almost always fatal. Asbestos related lung cancer (ARLC) appears and is treated similarly to lung cancer in non-asbestos-exposed individuals (Henderson et al., 2004). Although Mesothelioma and asbestos related lung cancer (M/ARLC) is a worldwide health issue the focus for this study is the Latrobe Valley, Victoria, Australia (Appendix I). Latrobe Valley is located at the gateway to Gippsland in the South East corner of the state of Victoria in Australia. The population of 71,000 residents living in the Latrobe Valley regional area (Latrobe City, 2008) grew around the development of the electricity industry and the mining of brown coal at Yallourn. Power station workers were exposed to asbestos in the construction of the power station as well as in the building of their own homes (White, Holroyd, & Leigh, 2006). (White et al., 2006) report that the second highest rate of asbestos related disease is among those who worked White, et al. directly with asbestos, commonly in the power and construction 1

10 industries. Former power workers in the Latrobe Valley are reported to be contracting Mesothelioma at a rate seven times the national average (Simpson, 2003). 1.1 Study aims This pilot study has two main aims. First, it sought to identify the common issues and needs of people dying with M/ARLC who are living in the Latrobe Valley. Secondly, the experience of those people as well as their carers, and service providers in the community in particular relation to palliative care was explored. It was anticipated that this project will form the basis for further research, and assist in developing clinical guidelines and models of care for practitioners in palliative care. 2

11 2. Literature review The literature review identified scholarly work relevant to the study as well as reporting attitudes and opinions related to the study apparent in grey literature. Several internet search engines were used to locate information, including Google, Google Scholar, Ovid, Informit, as well as journal and newspaper articles, Government publications and transcripts, and radio and television transcripts revealed elsewhere. Search terms included mesothelioma and asbestos, combined with attitudes, issues, Australia and Latrobe Valley. Amongst the scholarly literature, there were a number of publications on the medical diagnosis, treatment and scientific investigations related to curing asbestos related diseases. This literature was not reviewed for this study. The literature selected for the review focused on the perspectives of people with M/ARLC and their issues associated with the experience of diagnosis, legal issues associated with compensation and the search for curative treatments. There was little published information regarding the impact, experiences and needs of people diagnosed with M/ARLC and their families and a lack of Australian studies. This observation is also supported by Hawley and Monk (Hawley, Monk, & Wiltshire, 2004) In a Media Release by the Health Minister Tony Abbott announcing a commitment of $6.2 million for research on asbestos related disease it was reported that 20,000 people worldwide die each year of asbestos related cancers, 500 of those in Australia (Abbott, 2006). The correlation between exposure to asbestos equates worldwide to one death from Mesothelioma per 170 tons of asbestos produced and used as a direct result of work related exposure (Tossavainen, 2004). Deaths from asbestos related cancers in Australia were estimated to be 7000 people from , with predictions that this will rise to 18,000 by 2020 (Prince, Davidson, & Dudley, 2004). Incidence of Mesothelioma is usually linked proportionally to exposure; however, in 3 percent of cases reported in Australia since 1980, there was 3

12 less than 3 months exposure (Laursen, 2004). Others noted that there is no safe level of exposure (White et al., 2006). (Haigh, 2006), a Melbourne journalist, in his book Asbestos House, detailed the history of asbestos in Australia focusing on the James Hardie Company. This company was a broad based building supply company that provided asbestos products. The book indicated the significant time difference between early reports of apparent asbestos related illness and acknowledgement of the risk among health authorities and the James Hardie Company. (Haigh, 2006) reports that with some exceptions such as Dr Douglas Shiels who, in 1939, was medical officer for industrial hygiene in Victoria s health department, the attitudes of health authorities in Australia was, at best, apathetic, and at worst, culpable (p.403). The significance of the organisational apathy towards the risk may impact on issues experienced by people who are subsequently diagnosed with mesothelioma (Haigh, 2006). It has been suggested that the pain experienced by those diagnosed with Mesothelioma is often complex, and exacerbated by issues such as anger relating to the causative factors of the disease being out of control and ongoing legal action. This was confirmed by a multidisciplinary team developed specifically to address pain issues of people at a hospice in the United Kingdom (Proot et al.), which found particular issues for people diagnosed with Mesothelioma (Chapman, Hughes, Landy, Whale, & Saunders, 2005). The needs of this specific group were so significant that recommendations were made for early interventions such as intensive psychological work (Chapman et al., 2005). These people with Mesothelioma were seen to be withdrawn, stoic and more likely to request sedation rather than be involved in psychological strategies to address their distress. A qualitative study in the UK focussed on 15 people who had been diagnosed with malignant pleural mesothelioma (Clayson, Seymour, & Noble, 2005). The interviewers spoke of the stoicism of many of the participants and the emphasis on coping well, despite the difficulties the participants obviously experienced. 4

13 The provision of palliative care services in all settings and the enhancement of continuum of care have demonstrated benefits (Hanson & Ersek, 2006; Meyers, 2007; Stephens, 2008). Preferences for being nursed in the home with twenty-four hour telephone support are shown to be key components in improving patient and carer satisfaction according to a study on aspects of cancer. (ACN Working Party on the Management of Lung Cancer, 2002). This is also suggested to lessen the financial costs of providing nursing care. For some people diagnosed with Mesothelioma, the energy and time finding out how the health system works can be burdensome when they are already quite ill. An Australian study on developing strategies to meet the needs of people with Mesothelioma included assistance in navigating the journey (Hawley et al., 2004) as an important strategy to be addressed in planning for the future. Although (Hawley et al., 2004) study did not focus specifically on the experience of palliative care for people with Mesothelioma, planning for the future would logically include the provision of palliative care. Two of the authors of Hawley et al. s (2004) Australian study summarised the current practice and future research directions related to Mesothelioma. They reported that the Dust Diseases Board, a government organisation of New South Wales, found people diagnosed with M/ARLC have two main issues. The first of the issues identified were that of hope for a cure and the second was a concern regarding the location of their end of life care. The need for respite care is also highlighted to support families in what is referred to as the burden of care (Hawley & Monk, 2004). The involvement of women in support and advocacy in this region (the Latrobe Valley) was highlighted in the 2004 research study Work and Health in the Latrobe Valley: Community Perspectives on Asbestos Issues (LaMontagne & Walker, 2004). In a public comment, LaMontagne referred to the effects of disease from asbestos as an ongoing crisis for the Latrobe Valley community as it supports those diagnosed as well as grieving family members (The University of Melbourne, 2004). 5

14 The literature highlighted the burden for families beyond normal grief reactions of the newly bereaved. This additional burden related to the necessary involvement of the Coroner and the autopsy the coroner might recommend, can impact further on the anxiety and stress of surviving families (Downs, Giles, & Johnson, 2002). Since 2004, the death of a person who has had a history of asbestos exposure is reportable to the Coroner in Victoria. The Coroner suggested that confusion on the part of medical practitioners may be the reason for the small number of cases being reported. In addition, compensation claims can increase the burden of suffering (Clayson, 2003). As an acknowledgement of the impact of asbestos related diseases, in 2005, the Australian Government announced a $6.2 million strategy involving the establishment of a National Research Centre for Asbestos Related Diseases and the funding of 11 research projects over a three year period through. The focus of this research program was to develop treatments with the aim of curing diseases such as Mesothelioma (Australian Government, 2005). One of the grants funded in 2007 was for the establishment of a Latrobe Valley power industry cohort and bio specimen bank for the study of asbestos related disease. This and other work funded by the 2005 Australian Government strategy examines the biological basis of asbestos related disease risk and treatment. Also in this funding initiative was one project examining the community impact of asbestos related exposure in Western Australia, and one developing approaches to manage asbestos related disease in Aboriginal communities (National Health and Medical Research Council, 2006). In an interview for the Australian Broadcasting Commission in 2001, a Latrobe Valley local Member of Parliament commented that the effects of asbestos exposure to community members in the Latrobe Valley was a central health issue (Saccotelli, 2001b) and as such is deserving of specific research attention. This literature review has revealed substantial opinion that M/ARLC is likely to cause significant distress in people with the disease and their family and carers, but a scarcity of research to inform service provision, particularly in 6

15 palliative care. Because of the high rate of M/ARLC there, the context of the Latrobe Valley gives further weight to the necessity for more research in this area. In summary, the literature review highlighted several key issues: first, that asbestos related disease is a significant risk for people who have worked with asbestos; second, that there may be unique psychosocial needs in this group and their families caused by the aggressiveness of M/ARLC, the battle for compensation and the involvement of the coroner in a reportable death; third, that there is a lack of Australian research related to the palliative care needs of people with M/ARLC 7

16 3. Study context In some families in the Latrobe Valley, four generations have experienced exposure to asbestos (Doherty, 2007). The effect of asbestos on the health of women and children was noted by (Davis, 2007). She reported women washing their husbands work clothes and fathers hugging their children whilst contaminated with asbestos fibres. One local resident attending a remembrance service in 2004 spoke of her mother who had died six months previously, with asbestos related cancer, just 10 weeks after being diagnosed. This resident suspected that her mother contracted the disease when as a child she inhaled fibres from her grandfathers work overalls (ABC News, 2004). Ian Moore, diagnosed with an asbestos related cancer, was interviewed by reporter Ben Doherty (Doherty, 2007). Moore talked of his time working as an electrician at the Yallourn power plant. He said asbestos was everywhere, consumed through drinking, breathing and playful antics where workers threw it at each other. Time Bomb is an expression used by journalists and in the title of a book written by George Wragg to describe the presence of asbestos fibres in the human body (International Ban Asbestos Secretariat, 2002; Wragg, 1995). In an article for the International Ban Asbestos Secretariat Wragg s daughter discussed the difficulty in obtaining accurate figures in relation to liability claims from workers at the State Electricity Commission of Victoria (SECV). She cited the State Government in the early 2000 s suggesting that six thousand SECV employees are still considered to be at high risk of developing asbestos-related disease (International Ban Asbestos Secretariat, 2002). The full impact of asbestos exposure was believed to have not peaked in the Latrobe Valley as the next generation of people with M/ARLC are anticipated to be the wives and children of people who worked with asbestos, and those who worked to remove asbestos from the Commission s properties. 8

17 Reference has been made to an incident occurring over forty years ago when the Gippsland Trades and Labour Council implored the State Electricity Commission to allow health department inspectors into the Yallourn power station (Haigh, 2006). Dr Shiels, from the Victorian health department, was aware of the risk to workers using asbestos such as those at the power station but the State Electricity Commission were of the opinion that workers preferred current work practices and could decide if a medical examination was required. Approximately forty years later in 2001 the Latrobe Valley was featured in a national television documentary as a campaign was instigated to ban the importation of asbestos into Australia(Latrobe Community Health Service, 2007a). A recent newspaper article (Egan, 2008) in Melbourne s The Age newspaper reported the desire of those in the Latrobe Valley affected by M/ARLC to have an apology from the Victorian State Government for failing to protect the workers of the state run State Electricity Commission (International Ban Asbestos Secretariat). In The Age article, Eagan, notes: The Latrobe Valley community is skeptical about the Government's conflicting roles as the employer responsible for their asbestos contamination and the protector of public health. Reconciliation between the Government and the community has been hindered by the SEC's initial denials of asbestos hazards, lack of consultation, the suppression of information and bitterly fought compensation claims. (Egan, 2008) In an interview broadcast on the Australian Broadcasting Commission program PM, Gippsland Respiratory Physician Dr Tony Sasse drew an analogy between the benefits [financial] he perceived the Victorian Government received from the sale of the State Electricity Commission some years ago and the benefits received by those workers. He said that Latrobe Valley workers are a beneficiary of a time bomb, deep down inside them (Saccotelli, 2001a). 9

18 A media release by the Victorian Government (State Government of Victoria, 2003) announced a pledge to improve health programs in the Latrobe Valley to benefit power station workers. This was in response to a review of the Lung Function Program that has been screening power industry workers since The Government initiative included a commitment of $21 million to establish a Cancer Treatment Centre at Traralgon so residents of the Latrobe Valley would no longer have to travel to Melbourne for many treatments, a distance of approximately 150km. The Centre opened in mid 2006 but did not have any inpatient beds. In recent years an accommodation facility for people with cancer and families receiving treatment at the new cancer centre has been established by the Latrobe Group of Rotary Clubs. The concentration of people diagnosed with M/ARLC in the Latrobe Valley has also resulted in the formation of community support groups such as the Gippsland Asbestos Related Diseases Support group (GARDS) and the Latrobe Asbestos Disease Support group (LADS). Some residents interviewed by a newspaper reporter in one town spoke of the strong sense of community in the area (Elder, 2003). One man expressed sorrow over so many of his mates becoming ill from the effects of asbestos and the closure of businesses and services in the area as people relocated. Several people spoke of their concern that residents in the area are portrayed throughout Australia as not good people and Hillbilly trash. A community volunteer said that the community acknowledges and attempts to address social difficulties. An element of this strong community spirit is evidenced in the Asbestos Awareness Day held annually in the Rose Garden in Morwell. People diagnosed with M/ARLC, their relatives and carers, as well as power station workers and many community members attend these days of education and remembrance(abc News, 2004). An annual wreath laying ceremony for International Workers Memorial Day is also an important event in the community for recognising the impact of M/ARLC in the Latrobe Valley. 10

19 4. Methods 4.1 Design As there was little research informing the palliative care needs of people with M/ARLC and their families, particularly in the Latrobe Valley, a descriptive case study method was chosen as a methodology for this project. The case study method (Yin, 2003) comprises a detailed study of a group using multiple data sources described as an embedded case study design. Case study methods are useful when the context of a situation is complex and central to the study and where multiple perspectives need to be recognised, as is the case with this study (Walshe, Caress, Chew-Graham, & Todd, 2004). In this study, the context was a community in the Latrobe Valley where there is a significant population of people at risk of developing M/ARLC. The complexity of this context is in part a result of the range of health care services available and the mix of rural and regional town populations. The multiple perspectives of interest in this study were not only those experiencing M/ARLC, but those caring for them in families and in health care services, particularly palliative care services and also in local support services. The publicity around compensation claims has been significant and was also considered a variable of interest in affecting the experience of M/ARLC. Therefore, in this study, in-depth interviews of people who have been diagnosed with M/ARLC, family members and other key stakeholders, historical literature and media reports were used as data sources. In addition field notes were taken during the interviews to provide additional insight into the context of the data. 4.2 The sample The location for this study is the Gippsland area with the focus being Latrobe City. The Latrobe Valley located in the South East of the state is the fourth 11

20 largest regional area in Victoria. Like the rest of Australia, the Latrobe Valley has a projected increase in its ageing population of 20 percent by 2031 (Latrobe City Council, 2007). 70 percent of the residents of Gippsland live in Latrobe City. This City is inclusive of several towns including Moe, Morwell, Traralgon, Churchill and Yallourn North (see Appendix 1). According to Australian Bureau of Statistics census data, the population has declined between unlike the period between when there was major growth. That period of growth has been attributed to the additional jobs created in the development of the Thompson River Dam and the Loy Yang Power Station. The proportion of people over 50 years of age, living in Latrobe City, is estimated to increase dramatically from 28.4% in 2001 to 49.7% in 2031 (Latrobe City Council, 2007). Generally, people who are diagnosed with M/ARLC are males of between 60 and 75 years of age. In the Latrobe Valley, men with M/ARLC worked for the State Electricity Commission at Yallourn Power Station prior to its demolition in The family carers of people with M/ARLC are usually the wives and daughters of workers with asbestos. Medical and nursing care in the Latrobe Valley is provided by General Practitioners (GP s), Respiratory Physicians, Oncologists, and Radiologists and for specialist palliative nursing care, the Latrobe Community Health Palliative Care Interdisciplinary team. Two asbestos community support groups are active in the area; these are in addition to the State Asbestos Information and Support Service and the national body. Several legal companies are located in the area with two in particular focusing on asbestos compensation claims. Latrobe regional Hospital, which services the Latrobe Valley, has 257 beds located at Traralgon with emergency, surgery and a range of specialties, including a cancer treatment centre. The hospital has links to other local health services including the Latrobe Community Health Service. 12

21 4.3 Data Collection Prior to data collection, the project received approval from the Monash University Standing Committee on Ethics in Research on Humans. Data were collected between December 2006 and May The reference group established to guide the project identified potential participants in the community who had significant roles in the provision of legal and health care and other support services to people with M/ARLC. These potential participants were sent a letter of invitation and explanatory statement by the local support group and were asked, if interested, to contact the researcher to arrange an interview. All participants provided a written consent to be interviewed and to have the interview audio-recorded. 4.4 Data Analysis The recorded interviews were de-identified and transcribed verbatim. On some occasions, follow up telephone calls and communication were undertaken to clarify particular points in the interview transcript. Given the relatively small set of data, a computer based data management system was not used. The transcripts were analysed using the constant comparison technique (Strauss & Corbin, 1990). This technique involved line by line comparison of data and the generation of common concepts. Concepts were combined and reduced to common themes and sub-themes. The field notes, media and historical reports were used as analytical memos (Payne, Field, Rolls, Hawker, & Kerr, 2007; Strauss & Corbin, 1990) to deepen our understanding of the context of concepts arising from the analysis of the transcribed interviews. 13

22 The themes and sub-themes were presented to the reference group for comment discussion before being finalised. 14

23 5. Results A total of thirteen (13) participants were interviewed. Participants consisted of five key stakeholders who were local legal and healthcare providers, two people who had been diagnosed with Mesothelioma and six family carers. The carers interviewed were all females in their 60 s and 70 s. They had been in long established relationships with their male spouses. Most worked within the home with the primary role to manage the home and family although one carer had a professional background and another carer had previously worked in a health care role. All of the carers had lived in the local area for at least five years and three of the families had moved from another location within the area to be closer to services and to enable easier maintenance on smaller homes. Three of the carers were actively involved in caring for their partners at the time of the interviews. In one case, the partner of one of the carers was in the terminal stage of his disease having been diagnosed with Mesothelioma approximately three years previously. This carer was adamant that the prearranged interview should continue as planned, despite her husband being in the final days of his life. Three of the carers interviewed who were widowed and had been very involved in caring for their partners until their death. The two people interviewed who had both been diagnosed with Mesothelioma were retired men who lived with their female partners. One was diagnosed a few months prior to being interviewed and the other person had been living with his diagnosis for six years. Stakeholders interviewed represented a diverse range of support services relevant to M/ARLC, including Government, non-profit and professional organisations, for example, doctors, nurses, lawyers and community volunteers. All of the stakeholders had been in their positions for some time. The majority were residents in the area with one participant travelling to the region regularly to meet with people requiring his expertise. 15

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