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Research Topic : END-OF-LIFE DECISION
Scheme : NHMRC Strategic Awards
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  • Funded Activity

    Prospective Study Of Medical Emergency Team Calls To Define Issues Of End Of Life Decision Making

    Funder
    National Health and Medical Research Council
    Funding Amount
    $48,700.00
    Summary
    A Medical Emergency Team (MET) is a specialised team of doctors and nurses from the Intensive Care Unit who urgently come to patients on the general wards whose medical condition is very unstable. They have to make crucial decisions about their treatment in a very short time. The previous research in this area has been focussed on improving medical outcomes, however it is also apparent that the patients having MET calls are often seriously ill with life limiting illnesses. This study aims to exp .... A Medical Emergency Team (MET) is a specialised team of doctors and nurses from the Intensive Care Unit who urgently come to patients on the general wards whose medical condition is very unstable. They have to make crucial decisions about their treatment in a very short time. The previous research in this area has been focussed on improving medical outcomes, however it is also apparent that the patients having MET calls are often seriously ill with life limiting illnesses. This study aims to explore the broader aspects of care at this time, which are of paramount importance to patients and their families, such as various aspects of communication, particularly focusing on changing goals of care; and also the symptoms that may be causing significant distress for the patient. This project will provide information that will assist development of interventions that will both aim to improve quality of life and also communication in the setting of medical emergencies in patients with life limiting illness.
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    Funded Activity

    An Investigation Of Care Planning Decisions In Advanced Pulmonary And Cardiac Illness In The Bayside Health Care Region

    Funder
    National Health and Medical Research Council
    Funding Amount
    $47,726.00
    Summary
    There has been little Australian research to develop interventions that facilitate end of life decision making. This project will provide a framework for understanding the issues in the planning of end of life care for people with chronic and life limiting illness and the relationship of this planning to organizational policy. The care decisions in hospital records of people with advanced lung and heart disease will be reviewed and people with those diseases interviewed about the issues they exp .... There has been little Australian research to develop interventions that facilitate end of life decision making. This project will provide a framework for understanding the issues in the planning of end of life care for people with chronic and life limiting illness and the relationship of this planning to organizational policy. The care decisions in hospital records of people with advanced lung and heart disease will be reviewed and people with those diseases interviewed about the issues they experience in planning their future care. Professionals from a range of health organisations will be interviewed about their experiences of care planning for people with life limiting lung and heart disease. As a pilot, this project will be used to contribute to the development of a model for a coordinated multidisciplinary process that brings together the health care services in a region and contributes to the systematic, ongoing development of infrastructure to improve end of life care.
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    Funded Activity

    Informing The Development Of A Model Of Care For Patients With End Stage COPD: What Are Their Needs And And They Being Met

    Funder
    National Health and Medical Research Council
    Funding Amount
    $49,425.00
    Summary
    Currently there is no specific model of care for people with end stage chronic obstructive pulmonary disease (COPD), despite growing evidence of the specific symptoms and issues of this patient group. Interviews with end stage COPD patients and their carers will be undertaken to explore the services currently being accessed, and how well patients’ needs are being met by these services. This project will conduct an audit of available services in South Australia and then examine how hospital, spec .... Currently there is no specific model of care for people with end stage chronic obstructive pulmonary disease (COPD), despite growing evidence of the specific symptoms and issues of this patient group. Interviews with end stage COPD patients and their carers will be undertaken to explore the services currently being accessed, and how well patients’ needs are being met by these services. This project will conduct an audit of available services in South Australia and then examine how hospital, specialist palliative care units and primary care services (including general practice) can interface to meet these identified patient and carer needs. The results from this study will be used to inform development of a distinct model (or models) of care that addresses the needs of patients with end stage COPD.
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    Funded Activity

    Using N-of-1 Trials To Determine Effectiveness Of Paracetamol In Advanced Cancer Patients On Opioids

    Funder
    National Health and Medical Research Council
    Funding Amount
    $49,996.00
    Summary
    In advanced cancer, the prevalence of pain is very high (70-90%). Chronic pain is the most feared symptom and is not controlled in a large proportion of cancer patients. The impact on function (physical, mental, social and spiritual) and quality of life (QOL) is very significant. The role of paracetamol in the management of pain in patients with advanced cancer on opioids needs to be defined. Managing pain with treatment supported by the best possible evidence for individual patients and produci .... In advanced cancer, the prevalence of pain is very high (70-90%). Chronic pain is the most feared symptom and is not controlled in a large proportion of cancer patients. The impact on function (physical, mental, social and spiritual) and quality of life (QOL) is very significant. The role of paracetamol in the management of pain in patients with advanced cancer on opioids needs to be defined. Managing pain with treatment supported by the best possible evidence for individual patients and producing any improvement in pain will improve patients’ functional status, and will greatly improve QOL for patients and carers. N-of-1 trials are randomized, double-blind cross-over comparisons of active drug with placebo or another drug. The patient is their own control. N-of-1 trials provide objective means of testing effectiveness of medicines in individuals, providing evidence stronger than randomised controlled trial evidence for the efficacy of that drug in that individual. We will pilot N-of-1 trials of paracetamol for pain in 10 patients. If feasible, this will be a new method of obtaining strong evidence in a difficult to research population: palliative care patients.
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    Funded Activity

    Discussing Prognosis & End-of-life Issues In Palliative Care: Current Practice & Dvlpmnt Of Evidence Based Trng Program

    Funder
    National Health and Medical Research Council
    Funding Amount
    $149,955.00
    Summary
    Discussing prognosis and end-of-life issues is of key importance to palliative care patients and their families. We will a) prepare evidence based communication guidelines on these topics, b) analyse audio-taped consultations to see how these issues are currently discussed and c) develop and pilot a communication training module for palliative care clinicians. This could improve clinical practice, enhance patients' and families' psychological well-being and help patients to make appropriate deci .... Discussing prognosis and end-of-life issues is of key importance to palliative care patients and their families. We will a) prepare evidence based communication guidelines on these topics, b) analyse audio-taped consultations to see how these issues are currently discussed and c) develop and pilot a communication training module for palliative care clinicians. This could improve clinical practice, enhance patients' and families' psychological well-being and help patients to make appropriate decisions and prepare for their death.
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    Funded Activity

    A Study To Pilot A Clinical Trial To Test Dignity Psychotherapy For The Frail Aged

    Funder
    National Health and Medical Research Council
    Funding Amount
    $25,000.00
    Summary
    One of the greatest challenges today is to preserve the dignity of the frail elderly. Our study will test and perfect a strategy to trial a new approach for this population, Dignity Psychotherapy. The approach will document aspects of the senior's life that they regard as meaningful, want remembered, or of which they are proud. Among the terminally ill, the approach has had positive outcomes. Benefits for elders may include that the approach forms a foundation for holistic care.
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    Funded Activity

    Improving Quality Of Life Of People With Dementia Living In Residential Care Facilities A Randomised Trail Of Educat Int

    Funder
    National Health and Medical Research Council
    Funding Amount
    $777,409.00
    Summary
    The DIRECT study aims to determine if education of General Practitioners (GPs) and Residential Care Staff can improve the quality of life (QOL) of people with dementia living in Residential Care Facilities (RCF). Our hypothesis is that a systematic educational intervention delivered to GPs and RCF staff will improve care delivery, leading to measurable improvements in the quality of life of residential care recipients. We hypothesise that education delivered to GPs will have additive effects to .... The DIRECT study aims to determine if education of General Practitioners (GPs) and Residential Care Staff can improve the quality of life (QOL) of people with dementia living in Residential Care Facilities (RCF). Our hypothesis is that a systematic educational intervention delivered to GPs and RCF staff will improve care delivery, leading to measurable improvements in the quality of life of residential care recipients. We hypothesise that education delivered to GPs will have additive effects to education delivered to RCF staff. Dementia is the leading cause of non-fatal disease burden among older Australians. Of people with dementia, nearly half live in RCF. There appears to be much scope to improve care, and thus QOL, for people with dementia living in residential facilities. However, the most effective way to translate knowledge regarding the components of high quality care into practice is uncertain and there is a paucity of Australian data to guide practice. Education of RCF staff is likely to be the cornerstone of improved care for recipients of residential care who have dementia. GPs also play a key-role in the care of older people living in RCF, including collaboration in the development of management plans, prescription of medications and initiation of health referrals. A detailed action research process with data collected from surveys, focus groups and pilots will be used to develop educational programmes for delivery to GPs and RCF staff. The primary outcome of the study will be quality of life of the people with dementia, assessed by themselves, their family carers and the staff looking after them. Several tools incorporating different sources of information will be used to assess QOL in a comprehensive fashion. Secondary outcomes will include knowledge among GPs and RCF staff regarding dementia, markers of quality care, participants’ sleep quality, and carer satisfaction. It is anticipated that the results will fill this current gap in evidence and will be of value to policy makers and stakeholders from the Residential Care Industry and Peak Community and General Practice bodies. The study results will have tangible implications for proprietors, managers and staff from the residential care sector and policy makers. The results have potential to directly benefit the quality of life of both patients and carers.
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    Funded Activity

    Palliative Care For Aboriginal And Torres Strait Islander People With End-stage Renal Disease: An Action Research Initiati

    Funder
    National Health and Medical Research Council
    Funding Amount
    $295,554.00
    Summary
    There are significant gaps in current knowledge for providing culturally appropriate and effective palliative care for Aboriginal and Torres Strait Islander people with kidney failure. This project will consider these issues in partnership with the Kowanyama Community and the associated key Aboriginal and Torres Strait Islander and other agencies. Echoing the recommendations by the �National Indigenous Palliative Care Needs Study� this study will address the absence of a culturally appropriate m .... There are significant gaps in current knowledge for providing culturally appropriate and effective palliative care for Aboriginal and Torres Strait Islander people with kidney failure. This project will consider these issues in partnership with the Kowanyama Community and the associated key Aboriginal and Torres Strait Islander and other agencies. Echoing the recommendations by the �National Indigenous Palliative Care Needs Study� this study will address the absence of a culturally appropriate model of care pathway for Aboriginal and Torres Strait Islander people with advanced kidney failure to make effective informed choices for palliative care. Through the use of action research methodology this study will engage with Aboriginal and Torres Strait Islander people to consider these issues, taking into consideration their cultural, spiritual and social needs, those of their family, carers, healthcare personnel and the wider community. Subject to discussions and input from the Aboriginal and Torres Strait Islander people and other key stakeholders it is anticipated that the key areas of interest will focus on spirituality, quality of life, role of the family, carer and community, understandings and experience of kidney failure, treatment options, patient advocacy systems, the need for relocation, and the potential role of advanced care planning. Intervention strategies will also be conducted and evaluated. Subject to discussions and input from the Aboriginal and Torres Strait Islander participants and other key stakeholders it is anticipated that these will focus on a community based education program, development of a culturally appropriate quality of life questionnaire, development and piloting of a culturally appropriate mechanism for people to consider advanced care planning and development and piloting of a patient advocacy process for those from remote areas visiting metropolitan renal - palliative care health services.
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    Funded Activity

    Case Conferencing, Quality Of Life And Palliative Care For Clients From Remote Communities In The Northern Territory

    Funder
    National Health and Medical Research Council
    Funding Amount
    $42,750.00
    Summary
    This project addresses an area in the delivery of palliative care in rural and remote Top End of the NT, where research is seriously lacking. It will focus on the relationship between quality of life and communication between health providers and palliative clients and their carers. The conduit of communication will be case conferences and family conferences. There has been some research that reflects that case conferencing (in urban areas) in palliative care leads to improved quality of life (M .... This project addresses an area in the delivery of palliative care in rural and remote Top End of the NT, where research is seriously lacking. It will focus on the relationship between quality of life and communication between health providers and palliative clients and their carers. The conduit of communication will be case conferences and family conferences. There has been some research that reflects that case conferencing (in urban areas) in palliative care leads to improved quality of life (Mitchell 2006). This project will be assessing whether there is a similar association between quality of life and case conferencing in rural and remote Northern Territory. The project will also assess the dynamics of communication between palliative clients and their carers and the health providers.
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    Funded Activity

    Burden Of Disease&cost Effectiveness Of Intervention Options:informing Policy Choices & Health System Reform In Thailand

    Funder
    National Health and Medical Research Council
    Funding Amount
    $787,978.00
    Summary
    This research project aims to improve the scientific basis for health services provision in Thailand by filling important gaps in knowledge about the causes of disease and the possibility of effectively intervening to reduce them. Since the accuracy of the routine death registration system in Thailand is unknown, it cannot be confidently used to guide policy. The team will evaluate how accurately causes of death are being recorded, both in urban and rural areas. It will also calculate how much d .... This research project aims to improve the scientific basis for health services provision in Thailand by filling important gaps in knowledge about the causes of disease and the possibility of effectively intervening to reduce them. Since the accuracy of the routine death registration system in Thailand is unknown, it cannot be confidently used to guide policy. The team will evaluate how accurately causes of death are being recorded, both in urban and rural areas. It will also calculate how much disease and injury in Thailand is being caused by major risk factors, such as tobacco and unsafe sex. Using this information the team will evaluate the effectiveness of the major interventions to reduces diseases and injuries from risk factors that are affordable and applicable in the Thai context.
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