Documenting the process of developing the Victorian voluntary assisted dying legislation.

Many countries across the world have legislated for their constituents to have control over their death. Commonalities and differences can be found in the regulations surrounding the shape and practices of voluntary assisted dying (VAD) and euthanasia, including an individual's eligibility and access, role of health professions and the reporting. In Australia there have been perennial debates across the country to attempt legislative change in assisting a terminally ill person to control the ending of their life. In 2017, Victoria became the first state to successfully legislate for VAD. In describing the Victorian process that led to the passage of legislation for VAD, this paper examines the social change process. The particular focus of the paper is on the vital role played by a multidisciplinary ministerial advisory panel to develop recommendations for the successful legislation, and is written from their perspective.

Responding to the death of a resident in aged care facilities: perspectives of staff and residents.

A qualitative study using individual semistructured interviews was undertaken to explore the perceptions and experiences of 23 aged care residents with mild dementia concerning the deaths of coresidents. The views of 25 facility staff members were also explored. The study was based in 3 aged residential facilities in Victoria, Australia. Interview data indicated that residents and staff had differing views. Residents reported that the impact of the death of a coresident was much less than staff members thought. Residents generally wanted to be told about the death of someone they knew and considered attempts to hide the death and the removal of the body both unnecessary and disrespectful. Both groups agreed that the celebration of the life of a resident was important, although they differed in their preferences for the way this is done. These findings have implications for staff education and practice.

A case study approach to investigating end-of-life decision making in an acute health service.

AIM: To identify end-of-life (EOL) decision making processes for patients with non-cancer illnesses in a major metropolitan hospital. METHODS: A retrospective review using a case study framework of 47 randomly selected patient records over a 6-month period explored issues in EOL care planning. RESULTS: Reviewed charts represented 53% of total deaths in the study period. All patients (aged 66-99) had co-morbid conditions. In 64%, the first record of EOL discussions occurred in the last 24h of life. Four case groups were identified, ranging from a clear plan developed with patient/family involvement and fully implemented, to no plan with minimal patient/family involvement in decision making. Factors related to clearer EOL care planning according to expressed patient wishes included multiple previous admissions, shorter hospitalisations at EOL, living with a relative and involvement of family in decisions about care. CONCLUSION: This study has shown that the development and effective implementation of EOL plans is associated with the active involvement of both family members and health professionals. It also draws attention to the risks of delaying EOL discussions until late in the illness trajectory or later in life as well as pointing to challenges in acting on EOL developed outside the hospital environment.

A very public death: dying of mesothelioma and asbestos-related lung cancer (M/ARLC) in the Latrobe Valley, Victoria, Australia.

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 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.

GP and nurses' perceptions of how after hours care for people receiving palliative care at home could be improved: a mixed methods study.

BACKGROUND: Primary health care providers play a dominant role in the provision of palliative care (PC) in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs) and PC nurses. METHODS: Questionnaires, developed from the outcomes of the earlier phase, and containing both structured and open ended questions, were distributed through Divisions of General Practice (1 urban, 1 rural, 1 mixed) to GPs (n = 524) and through a special interest group to palliative care nurses (n = 122) in both rural and urban areas. RESULTS: Questionnaires were returned by 114 GPs (22%) and 52 nurses (43%). The majority of GPs were associated with a practice which provided some after hours services but PC was not a strong focus for most. This was reflected in low levels of PC training, limited awareness of the existence of after hours triage services in their area, and of the availability of Enhanced Primary Care (EPC) Medicare items for care planning for palliative patients. However, more than half of both nurses and GPs were aware of accessible PC resources.Factors such as poor communication and limited availability of after hours services were identified the as most likely to impact negatively on service provision. Strategies considered most likely to improve after hours services were individual patient protocols, palliative care trained respite carers and regular multidisciplinary meetings that included the GP. CONCLUSION: While some of the identified gaps can only be met by long term funding and policy change, educational tools for use in training programs in PC for health professionals, which focus on the utilisation of EPC Medicare items in palliative care planning, the development of advance care plans and good communication between members of multidisciplinary teams, which include the GP, may enhance after hours service provision for patients receiving palliative care at home. The role of locums in after PC is an area for further research.