ORIGINAL RESEARCH A very public death: dying of mesothelioma and asbestos-related lung cancer (M/ARLC) in the Latrobe Valley, Victoria, Australia SF Lee 1, MM O’Connor 1, Y Chapman 1, V Hamilton 2, K Francis 1 1School of Nursing and Midwifery, Monash University, Frankston, Victoria, Australia 2Gippsland Asbestos Related Diseases Support Inc, Moe, Victoria, Australia Submitted: 25 February 2009; Revised: 8 May 2009; Published: 25 August 2009 Lee SF, O’Connor MM, Chapman Y, Hamilton V, Francis K A very public death: dying of mesothelioma and asbestos-related lung cancer (M/ARLC) in the Latrobe Valley, Victoria, Australia Rural and Remote Health 9: 1183. (Online), 2009 Available from: http://www.rrh.org.au A B S T R A C T Introduction: It is anticipated that in Australia the number of cases of mesothelioma will continue to rise significantly over the next 15 years with power station workers having a risk second only to asbestos mill workers. Mesothelioma responds poorly to treatment and is almost 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, Victoria, Australia. The aims of this pilot study were to identify common issues and to explore the needs and experiences of people with mesothelioma and asbestos-related lung cancer (M/ARLC), their carers, and service providers in the Latrobe Valley community, in particular in relation to palliative care. Methods: The study employed a case study design using in-depth interviews, media reports, local authority and employer reports and historical data, which were content analysed. The constant comparative method was used to identify common themes and issues. Results: The Latrobe Valley is the fourth largest regional area in Victoria. The electricity industry and brown coal mining at the town of Yallourn were the primary industries. Former power workers are contracting mesothelioma at a rate seven times the national average. A total of 13 participants from the Latrobe Valley were interviewed, comprising five key stakeholders who were local legal and healthcare providers; two people who had been diagnosed with mesothelioma; and six family carers. Most people with M/ARLC in the Latrobe Valley are older males who were employed by the electricity and related industries, while their carers © SF Lee, MM O’Connor, Y Chapman, V Hamilton, K Francis, 2009. A licence to publish this material has been given to ARHEN http://www.rrh.org.au 1 are mostly female wives and daughters. There were three major themes identified in the data: illness experience; carer and family roles; and services and service gaps. The results indicated that those with M/ARLC and their families experience diagnosis and treatment as being filled with unpredictability and fear. The older males with M/ARLC were characterised as stoic and reluctant to seek help, contributing to a delayed diagnosis. However, their rural health services compounded these delays because of the unpredictability of health professional availability. 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. The effort and time required to seek compensation at a time of declining health was particularly burdensome. Participants expressed the tension between feelings of loyalty to their employers and anger at the perceived betrayal of the same employers, who were reported to have ignored asbestos warnings. Access to palliative care was delayed by a discomfort associated with acknowledgement of dying and resulted in poor symptom control and a lack of support to significantly burdened carers. People with M/ARLC have a strong desire to die at home but issues of rurality, isolation and late referral to palliative care services often complicate their care. Conclusions: This pilot study explored the needs of people with M/ARLC in the Latrobe Valley and the results indicated that their experience is complicated by unpredictability, lack of information and the rural location. The study recommended that innovative models of care be investigated to improve communication and continuity of care in the Latrobe Valley community, in addition to the barriers and enablers to local health and legal service provision. Further, the study indicates that a comprehensive education strategy for local health providers and community members, and strategies to prevent and manage volunteer and health professional burnout are needed. Key words: asbestos, compensation, lung cancer, mesothelioma, palliative care, rural health. Introduction study was the Latrobe Valley, Victoria, Australia. The Latrobe Valley is located at the gateway to the Gippsland area in the south east of the state of Victoria in Australia. Asbestos was used extensively from the 1800s in industrial The population of 72 000 residents living in the Latrobe applications and as early as the 1900s, workers in the Valley regional area 3 grew around the development of the asbestos industry were reported to be dying of respiratory electricity industry and the mining of brown coal at the town diseases. However it was many years before the publicity of Yallourn. Power station workers were exposed to asbestos surrounding the risk to workers of asbestos exposure resulted during construction of the power stations, as well as in the in the removal of asbestos from industry. building of their own homes 4. Former power workers in the Latrobe Valley are reported to be contracting mesothelioma Asbestos related lung disease can take many years to at a rate seven times the national average 5. develop following exposure and can manifest in benign or malignant forms 1. Mesothelioma is a cancer of the cells Literature review lining the lungs and abdominal cavity. It has been strongly linked to asbestos, is poorly responsive to treatment and is The aim of the literature review for this study was to almost always fatal. Asbestos related lung cancer (ARLC) determine the issues experienced by people with M/ARLC. causes similar symptoms and is treated similarly to lung The literature review identified scholarly work relevant to cancer in non-asbestos-exposed individuals 2. the study, as well as reporting attitudes and opinions related to the study apparent in media articles, reports and historical Although mesothelioma and asbestos related lung cancer literature. The literature selected for the review focused on (M/ARLC) is a worldwide health issue, the focus for this the perspectives of people with M/ARLC and their issues © SF Lee, MM O’Connor, Y Chapman, V Hamilton, K Francis, 2009. A licence to publish this material has been given to ARHEN http://www.rrh.org.au 2 associated with the experience of diagnosis, legal issues components in improving patient and carer satisfaction, associated with compensation and the search for curative according to a study on aspects of cancer 15 . treatments. There was little published information regarding the impact, experiences and needs of people diagnosed with For some people diagnosed with mesothelioma, the energy M/ARLC and their families, and a lack of Australian studies, and time required for finding out how to navigate the health an observation supported by Hawley et al 6. system can be burdensome when they are already quite ill. An Australian study on developing strategies to meet the Haigh, in his book ‘Asbestos House’, detailed the history of needs of people with mesothelioma included assistance in asbestos in Australia, focusing on the James Hardie ‘navigating the journey’ 6 as an important strategy to be Company 7. This company was a broad-based building supply addressed in planning for the future. Although this study did company that provided asbestos products. The book not focus specifically on the experience of palliative care for indicated the significant time difference between early people with mesothelioma, planning for the future would reports of apparent asbestos related illness and logically include the provision of palliative care. As a result acknowledgement of the risk among health authorities and of that study, Hawley and Monk reported that people the James Hardie Company. The significance of the diagnosed with M/ARLC have two main issues 16 . The first organisational apathy towards the risk may impact on issues concerned hope for a cure, and the second was a concern experienced by people who are subsequently diagnosed with regarding the location of their end of life care. The need for mesothelioma 7. It has been suggested that the pain respite care is also highlighted to support families in what is experienced by those diagnosed with mesothelioma is often referred to as ‘the burden of care’. complex, and exacerbated by issues such as anger relating to the causative factors of the disease being out of control, and The literature highlighted the burden for families beyond ongoing legal action 8. The complexity of the pain normal grief reactions of the newly bereaved. This additional experienced by those with mesothelioma was confirmed by a burden related to the necessary involvement of the coroner multidisciplinary team developed specifically to address the and the autopsy the coroner might recommend, which can pain issues of people at a hospice in the UK, which found impact further on the anxiety and stress of surviving particular issues for people diagnosed with mesothelioma 9. families 17 . In addition, compensation claims can increase the Despite identifying that people with mesothelioma had burden of suffering 18 . significant psychological distress, another study by Clayson, Seymour and Noble also found people with mesothelioma The literature review indicated that M/ARLC is likely to were stoic and more likely to request sedation rather than be cause significant distress in people with the disease and their involved in psychological strategies to address their family and carers, but there is a scarcity of research to distress 10 . inform service provision, particularly in palliative care.