title: A very public death: dying of mesothelioma and asbestos-related lung cancer (M/ARLC) in the Latrobe Valley, Victoria, Australia.
abstract: BACKGROUND
  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 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.
authors.affiliation: School of Nursing and Midwifery, Monash University, Frankston, Victoria, Australia. Susan.Lee@med.monash.edu.au
authors.forename: Susan F
authors.initials: SF
authors.lastname: Lee
authors.forename: Margaret M
authors.initials: MM
authors.lastname: O'Connor
authors.forename: Ysanne
authors.initials: Y
authors.lastname: Chapman
authors.forename: Vicki
authors.initials: V
authors.lastname: Hamilton
authors.forename: Karen
authors.initials: K
authors.lastname: Francis
mesh_terms: D001194:Asbestos / Q000009:adverse effects* / Q000506:poisoning; D017028:Caregivers; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008175:Lung Neoplasms / Q000209:etiology*; D008297:Male; D008654:Mesothelioma / Q000209:etiology / Q000401:mortality*; D016273:Occupational Exposure / Q000009:adverse effects; D010166:Palliative Care; D012423:Rural Health; D019452:Terminally Ill; D014739:Victoria / Q000453:epidemiology
chemical_list: D001194:Asbestos