$1.09 million to investigate better ways to care for the dying
The Federal Minister for Health and Ageing, Senator Kay Patterson, today announced funding of $1.09 million for 10 strategic research projects in palliative care in Australia.
25 March 2002
$1.09 million to investigate better ways to care for the dyingThe Federal Minister for Health and Ageing, Senator Kay Patterson, today announced funding of $1.09 million for 10 strategic research projects in palliative care in Australia. The research program will be funded under the Commonwealth's $10.7 million National Palliative Care Program and administered by the National Health and Medical Research Council.
Senator Patterson said that the research program aimed to achieve the best possible quality of life, both for people who are dying, and for their families.
"Australians who are dying deserve to be treated in an appropriate and dignified manner," Senator Patterson said. "Many of these projects will help ensure that there is equitable access to care for terminally ill people, including those living in rural or remote regions of Australia, older Australians and Indigenous Australians. Other projects will examine what happens as people approach the end of life."
Senator Patterson said Australians in rural and remote areas could face specific challenges when it came to getting the care they needed. "Three of the projects funded will address such issues by trialling innovative ways of delivering services to rural areas, such as developing a kit for use in remote communities or videoconferencing," she explained.
Other projects will look at what good work is already happening and suggest how this could be improved. Palliative care service delivery to Indigenous people living in the Northern Territory, people dying of neurological diseases such as Parkinson's disease, motor neurone disease or multiple sclerosis, and residents in aged care facilities will be assessed. In addition, a random control trial will be carried out to determine how soon after diagnosis terminal cancer patients should be referred to palliative care services.
"Because little is known about the course of end of life illness, some of the projects will look at the things that make a difference at the end of life. For instance, one will look at ways to improve the care of people dying with chronic heart failure," Senator Patterson said.
Sharing good ideas, trying out different solutions, building on strengths and learning from each other - that is what this program is all about.
"Because the research priorities were developed in response to a broad consultative process with stakeholders, consumer groups and researchers, I'm confident that they will provide a strong evidence base to improve service delivery and symptom management," the Minister said.
Details of the ten projects
Innovative models of palliative care health service delivery to rural areas: a multi-disciplinary studyContact: Pam McGrath (07) 3365 2162
University of Queensland
A multi-disciplinary team of researchers will explore the provision of palliative care health service delivery to Indigenous people living in rural areas of the Northern Territory. The expected outcome is the description of an innovative model for rural and remote palliative care service provision to Indigenous people based on an understanding of what is presently available, which models work most effectively and what is needed.
Development of a 'pop-up palliative care service': a new model for providing palliative care to rural and remote communitiesContact: Kate White (08) 9273 8437
Edith Cowan University, WA
This project will develop, implement and evaluate a new model of providing palliative care to individuals in rural and remote communities that will utilise existing health and community resources to provide palliative care. As the number of patients requiring palliation in rural and remote communities is small, the service may not function at all times but come together (pop-up) as required. Evaluation of the model in three different types of rural communities will be undertaken in three states (New South Wales, Queensland and West Australia). Phase I will develop a framework to assist rural communities undertake a critical palliative care service review. Phase II will implement and evaluate the model, leading to recommendations for provision of best practice palliative care more generally in rural communities.
The investigation of innovative tele-medicine models to support palliative care delivery in rural and remote AustraliaContact: Ian Olver (08) 8222 5577
University of Adelaide
This project will investigate the impact of videophone communication between patients wishing to remain at home for their palliative care and their outreach nurses in a remote setting. Patients visited at home will be identified by their palliative care nurses and asked to give consent to have a videophone installed. The carers and nurses will evaluate the impact of the videophones using a questionnaire at the completion of the episode of care. Because suitable telephone lines are available throughout most country areas and the devices are portable and as easy to use as a telephone the use of videophones between palliative care nurses and remote nurses or between patients, if effective, will be widely applicable.
Assessment of the effectiveness of Australian models of palliative care delivery in four neuro-degenerative disorders.Contact: Linda Kristjanson (08) 9273 8617
Edith Cowan University, WA
This study will be conducted in three Australian states (Queensland, Victoria and West Australia), to assess the effectiveness of existing palliative care service delivery to people with motor neurone disease, multiple sclerosis, Huntington's disease or Parkinson's disease, and to their families. In phase I, interviews will be conducted with people who have these diseases, their families, and health professionals to discover the needs for palliative care services. In phase II, a survey will determine the extent to which these needs are met. The findings will be used to recommend improved palliative care delivery models.
Palliative care constituency, utilisation and impact on health care: a Western Australian based epidemiological and sociological studyContact: Beverley McNamara (08) 9380 2742
University of Western Australia
Using the Western Australian linked database and in consultation with palliative care service providers, the study will: Study patterns of palliative care delivery during the last 12 months of life, comparing utilisation between different socio-demographic groups and cause of death.
Study the relationships between the services provided and the terminally ill.
Develop a definition of those who utilise designated palliative care programs and apply it to the population of Western Australia in 1994-1999.
Develop a forecasting model to optimise the planning and delivery of palliative care service in Australia.
Early referral to palliative care: a randomised trial of patients with metastatic cancers and a survival expectation of less than 12 months.Contact: Martin Tattersall (02) 9660 7362
University of Sydney
It is not known when, in the course of incurable cancer, palliative care advice should be sought. A randomised trial will be conducted on patients consulting with a medical or radiation oncologist. Consenting patients will be randomised to either receive palliative care advice immediately or somewhat later after diagnosis. The consequences of early contact with palliative care professionals will be documented using a range of patient measures including quality of life, symptom control and assessment of unmet needs. The research includes a cost consequence analysis.
Body composition changes in cardiac cachexia: patho-physiology and quantificationContact: David Kaye (03) 9276 3263
Baker Institute of Medical Research, Vic
Cachexia is weight loss and weakness caused by disease, or as a side effect of illness. Congestive heart failure is a common cardiovascular condition that is accompanied by high mortality (up to 50% over 2 years) and considerable suffering. People with congestive heart failure often develop cachexia. This project will explore the mechanisms responsible for the development of cachexia using an animal model of cardiac cachexia that the researchers have developed. It will be complemented by an examination of the effects of exercise on measures of cachexia in patients with congestive heart failure. The researchers believe that this study will supply valuable new information about the development of cachexia and lead to new therapies for this syndrome.
Improve care of the dying with chronic heart failureContact: Patricia Davidson (02) 9350 3171
South Eastern Sydney Area Health Service
Chronic heart failure is increasing in prevalence and is primarily a condition of ageing. Although chronic heart failure has worse outcomes than many cancers, patients are often denied the benefits of palliative care with its emphasis on symptom management, spirituality, emotional health and focus on family issues. This project seeks to assess the state of knowledge in Australia related to palliative care in chronic heart failure. Guidelines and care maps appropriate to Australian conditions will be developed and their usefulness assessed in improving care of patients and their families.
Objective assessment (based on whole body bio-impedance) of the trajectory of the course of illness for end of life non-cancer related diseases: biological, social and environmental determinantsContact: Neil Piller (08) 8204 4711
Flinders University, SA
The course of non-cancer related disease is difficult to assess clinically making it hard for clinicians to accurately predict the end of life course of illness for patients. No matter what the end of life disease is, death will involve multi-system organ failure and changes in body composition. These changes, including fluid distribution, muscle mass and type and fat mass as well as measures of body mass index, basal metabolic rate and arm muscle circumference can be accurately followed with non-invasive multi-frequency bio-impedance. This information will provide a basis to either confirm the clinical diagnosis or lead to recommendations for change.
Palliative care in aged care facilities for residents with a non-cancer diagnosisContact: Carol Grbich (08) 8201 3271
Flinders University, SA
Preliminary studies have suggested there may be deficiencies in the care of residents in aged care facilities who have advanced terminal illnesses other than cancer. Aged care residents do not have access to the expertise and resources available to clients of palliative care services where cancer is the major diagnosis. This study aims to investigate the extent and nature of any deficits experienced in aged care facilities and to employ palliative care standards to develop strategies so that any unmet needs can be addressed.
Media Contact: Randal Markey (Minister's Office) 02 6277 7220
Jeanne Klener (NHMRC) 02 6289 5796