Improving communication about end of life issues for people with dementia

This project aims to significantly improve the quality of care provided to people with Alzheimer's Disease or other dementias by developing and implementing systems, skills and resources for carers and health professionals that will facilitate timely communication between those diagnosed with Alzheimer's Disease or other dementias, their primary carers, families and multi-disciplinary team about end of life issues.

Chief Investigator: Professor Elizabeth Beattie and Professor Patsy Yates
Partner Investigators: Meredith Gresham, Catriona Lorang, Chris King, James Grealy and Nicky Hayward-Wright.
Collaborative Groups: Queensland University of Technology, Spiritus, The Salvation Army Aged Care Plus, Alzheimers Australia.
Status: Project commmenced July 2010 and is due for completion November 2011.

Project Contact Details
Catriona Lorang
P (02) 8280 8444
E clorang@hammond.com.au

End of life care: An integrated care pathway for advanced dementia

This project uses a continuous practice improvement methodology to develop an integrated care framework which can assist staff to provide evidenced based care for residents with advanced dementia in their last days of life. The advanced dementia specific framework will promote multidisciplinary collaboration and address the needs of professional decision making relating to common care requirements in the setting of cognitive decline and the end of life phase. Specific decisions needed relating to nutrition and hydration requirements, assessment and management of pain, behavioural disturbance and family grief and loss planning will be determined. In addition religious/spiritual needs and other emotionally significant aspects relating to end of life care specific to dementia will be determined through consultation and consensus. This project is funded by the Australian Government Department of Health and Ageing.

Chief Investigator: Assoc Prof Meera Agar
Partner Investigators: Meredith Gresham, Janet Heslep, Pam Moore, Aileen Collier, Linda Hansen and Dr Michael Noel.
Collaborative Groups: St Hedwig Village, Palliative Care NSW
Status: The integrated care framework has been developed and is currently being piloted. The project is due for completion by June 2011.

Project Contact Details
Janet Heslep
P (02) 9616 8658
E jheslep@hammond.com.au

Improving end of life care for residents, their families and staff: A case conferencing approach for older people living with advanced dementia

This project seeks to implement and evaluate a systematic case conferencing model of intervention to improve the care and quality of life for people with advanced dementia and other mental illnesses in residential aged care facilities (RACF). Case conferencing is the mechanism to combine meticulous multidisciplinary assessment and planning informed by the individuals advance care plan to lead to these outcomes. Systematic steps in this process will involve: integrating specialist palliative care and specialist aged care psychiatry involvement where appropriate in RACF; facilitating care communicating and coordination; increasing uptake of symptom management strategies and decreasing unnecessary hospitalisations; and facilitating transitions in care if hospital admissions are necessary (communicating care planning to new care environment). This project is funded by the Australian Government Department of Health and Ageing.

Chief Investigator: Assoc Prof Meera Agar
Partner Investigators: Meredith Gresham, Fiona Kendall, Penny West and Elizabeth Brennan.
Collaborative Groups: Flinders University, Catholic Healthcare
Status: Project has commenced and is due for completion June 2011.

Project Contact Details
HammondCare Research team
P (02) 8280 8444
E research@hammond.com.au

Experiences of a palliative care day hospital: Patients' perspectives

This project aims to explore the experience and views of patients who attend a palliative care day hospital which focuses on goal setting. The objective is to explore the patients experience when attending the palliative care day hospital, and to understand and record their perceptions of the therapies they receive.

Chief Investigator: Gerry Dixon
Partner Investigators:  Assoc Prof Meera Agar
Status: Project has commenced and is due for completion June 2011.

Project Contact Details
Gerry Dixon
P (02) 9998 3600
E gdixon@hammond.com.au

A palliative approach for people with declining health living in hostel accommodation: The state of play

In Australia, residential aged care facilities are increasingly becoming the place of care and site of death for people with complex chronic illnesses. Consequently, it is becoming ever more relevant for these facilities to take a palliative approach to care. Since most research to date has focused on end-of-life care in high-level care nursing homes settings, little is known about the use of a palliative approach in caring for elderly people with complex needs living in hostels in Australia.

The study aims to: (i) map high-level care residents in residential low-level care settings in relation to demographic information, medical illnesses, co-morbidities, physical function and individual symptoms, (ii) explore residents perceptions of their situation and how they would like their care to be managed into the future, (iii) explore aged care staff’s understandings of what constitutes a palliative approach, and their perspectives on how this approach is incorporated into the care of their high-level residents in hostel settings, and (iv) review organisational and managerial data such as policies, procedures and staffing.

Chief Investigator: Peta McVey
Partner Investigators: Dr Heather McKenzie and Professor Kate White
Collaborative Groups: University of Sydney
Status: In progress.

Project Contact Details
Peta McVey
P (02) 9488 2200
E pmcvey@hammond.com.au

Descriptive study of associated clinical factors and efficacy of Compression Therapy in Treatment of Male Genital Oedema in Palliative Care Patients

Chronic oedema is an important cause of morbidity in the palliative care population. Within this group male genital oedema is relatively uncommon but is extremely uncomfortable and distressing for those with the condition. There is limited literature available regarding its epidemiology and impact on palliative care patients and palliative care health services. The aim of this study is to assess the prevalence of male genital oedema in the palliative care setting, the magnitude of the problem, and its impact on patients and health resources. The project will also explore and address barriers to effective management of male genital oedema.

Chief Investigator: Edite Tang
Partner Investigators: Assoc Prof Meera Agar and;Mark Buhagiar
Status: In progress.

Project Contact Details
Edite Tang
P (02) 9616 8616
E edite.tang@sswahs.nsw.gov.au

Examining Organisational Complexity and Clinical Risk to improve hospital patients' safety

The study focuses on space and safety particularly with regard to end of life care. This study aims to explore safe healing environments towards the end of life, explore how healthcare spaces can enhance safety and healing and the potential of visual methods to facilitate mutual understanding between patients, families and healthcare workers.

Chief Investigator: Professor Rick Iedema
Partner Investigators: Aileen Collier
Collaborative Groups: Centre for Health Communication
Status: In progress

Project Contact Details
Aileen Collier
E Aileen.Collier@student.uts.edu.au

Randomised control trial of oral risperidone, oral haloperidol, and oral placebo with rescue subcutaneous midazolam in the management of delirium in palliative care inpatients

A randomised double blind placebo controlled phase III study to compare the effectiveness and toxicity of oral risperidone, oral haloperidol, and oral placebo with rescue subcutaneous midazolam in the management of palliative care patients with “Diagnostic and Statistical Manual of Mental Disorders – IV edition revised” (DSM IV – R) defined Delirium.

Chief Investigator: Assoc Prof Meera Agar
Collaborative Groups: Palliative Care Clinical Studies Collaborative (PaCCSC)
Status: In progress and open for recruitment

Project Contact Details
Assoc Prof Meera Agar
P (02) 9616 8600
E meera.agar@sswahs.nsw.gov.au

Randomised, double blind control trial of megestrol acetate, dexamethasone and placebo in the management of anorexia in people with cancer

The aim of this study is to compare megestrol acetate (480 mg mg/day) to placebo and dexamethasone 4 mg/day to placebo for their ability to produce short-term appetite stimulation and quality of life enhancement in people with advanced cancer receiving palliative care

Chief Investigator: Assoc Prof Paul Glare
Collaborative Groups: Palliative Care Clinical Studies Collaborative (PaCCSC)
Status: In progress and open for recruitment

Project Contact Details
Assoc Prof Meera Agar
P (02) 9616 8600
E meera.agar@sswahs.nsw.gov.au

A randomised double-blind multi-site fixed dose controlled cross-over trial comparing morphine, oxycodone and placebo for the relief of refractory breathlessness

To evaluate the efficacy of opioids in the treatment of dyspnoea in people with a life limiting illness. Specifically, the study will determine whether opioids (sustained release morphine 20mg mane, or controlled release oxycodone 5mg three times daily) are more effective than a placebo in the management of dyspnoea in people with a life-limiting illness.

Chief Investigator: Professor David Currow
Collaborative Groups: Palliative Care Clinical Studies Collaborative (PaCCSC)
Status: In progress and open for recruitment

Project Contact Details
Assoc Prof Meera Agar
P (02) 9616 8600
E meera.agar@sswahs.nsw.gov.au

A two-stage trial of anti-emetic therapy in patients with cancer and nausea not related to anticancer therapy

To determine whether guideline driven aetiology based anti-emetic therapy (targeted therapy) is more effective than single agent therapy with haloperidol in patients with cancer and nausea not related to anticancer therapy.

Chief Investigator: Professor Patsy Yates
Collaborative Groups: Palliative Care Clinical Studies Collaborative (PaCCSC)
Status: In progress and open for recruitment

Project Contact Details
Assoc Prof Meera Agar
P (02) 9616 8600
E meera.agar@sswahs.nsw.gov.au

A randomised double blind placebo controlled trial of infusional subcutaneous octreotide in the management of malignant bowel

To compare the efficacy of subcutaneous octreotide relative to placebo in the setting of parenteral ranitidine, dexamethasone and hydration in the treatment of malignant bowel obstruction in people with advanced cancer in: reducing frequency of vomiting, and changes in quality of life, performance status, pain, use of other medications and health service utilisation.
 
Chief Investigator:  Professor David Currow
Collaborative Groups: Palliative Care Clinical Studies Collaborative (PaCCSC)
Status: In progress and open for recruitment

Project Contact Details
Assoc Prof Meera Agar
P (02) 9616 8600
E meera.agar@sswahs.nsw.gov.au

A randomised double-blind multi-site parallel arm controlled trial to placebo

The primary aim is to test the efficacy of sertraline compared with placebo in relieving the sensation of intractable breathlessness. Secondary aims focus on the impact of the sertraline on improving quality of life, dyspnoea-related anxiety and depression, adverse effects, function and clinical predictors of benefit.

Chief Investigator:  Professor David Currow
Collaborative Groups: Palliative Care Clinical Studies Collaborative (PaCCSC)
Status: In progress and open for recruitment

Project Contact Details
Assoc Prof Meera Agar
P (02) 9616 8600
E meera.agar@sswahs.nsw.gov.au

Pharmacovigilance study 

This study will investigate the adverse effects of commonly used agents in the palliative care population.

Chief Investigator: Dr Melanie Lovell
Partner Investigators: Professor David Currow
Collaborative Groups: Palliative Care Clinical Studies Collaborative (PaCCSC)
Status: In progress

Project Contact Details
Dr Melanie Lovell                           
P (02) 9903 8293
E mlovell@nsccahs.health.nsw.gov.au

Overcoming Cancer pain

Pain is a significant problem for patients with cancer. There is evidence that despite widespread availability of effective pain relief strategies in Australia, cancer pain is often poorly controlled. Patient education about pain for people with cancer has been shown to improve patient knowledge, attitudes and pain control, but targeted, comprehensive and easy-to-understand information has been difficult to source. This project sought to develop and evaluate an education package designed to help improve cancer pain management.

Results from the initial qualitative study demonstrated that Australian cancer patients are reluctant to use analgesia and have a number of attitudinal and knowledge barriers to communicating about pain and using pain relief medications: there is a pressing need for targeted education.

In response, Dr Lovell developed education materials including a booklet and a DVD. The efficacy of the educational intervention was tested in a multi-site randomised controlled trial. Patients that received both the booklet and the DVD had reduced average pain scores and scores that measure ‘worst pain’. Those receiving just the booklet reduced their opioid use.

The education was demonstrated to be an effective, feasible and relatively inexpensive adjunct to a multi-pronged pain management approach. The Cancer Council of NSW has produced 25,000 booklets and DVDs for distribution.

Chief Investigator: Dr Melanie Lovell
Partner Investigators: Associate Professor Frances M Boyle AM

Status: Project completed December 2009
Links: To read the full text publication please click here and to access the journal article please click here.

Project Contact Details
Dr Melanie Lovell
P (02) 9903 8293
E mlovell@nsccahs.health.nsw.gov.au

Delirium in advanced cancer

Delirium in advanced cancer is prevelant, under recognised by health professionals, predictive of death and distressing to the person and their family. There is limited prospective data to guide management. The aim was to survey current practice of specialist using two contrasting cases of delirium in cancer to identify investigations and treatment used. The survey emphasised the significant areas of variability in the management of delirium in advanced cancer; depending on the speciality area of the treating doctor. There is urgent need for evidence to guide management in ways that draw on the strength and knowledge of different medical and allied health disciplines. Treating delirium is crucial to being able to treat other end-of-life symptoms such as pain and is important for families as well. "A family will take away a better memory and a positive end-of-life experience for their loved one rather than a painful, confused one".

Chief Investigator: Assoc Prof Meera Agar
Research Partners: Flinders University

Status: Project completed July 2008
Links: To read the full text article please click here.

Project Contact Details
Assoc Prof Meera Agar
P (02) 9616 8600
E meera.agar@sswahs.nsw.gov.au

HammondCare Collaborations

Improving Palliative Care through Clinical Trials (ImPACCT)
ImPaCCT’s mission is to improve NSW palliative care services for people with advanced cancer and other life limiting illness through ethical, scientifically rigorous, collaborative research. HammondCare is an active participant in this collaborative, with our researchers involved in its ongoing work.

Links: For more information about ImPACCT please click here.

Last updated 24 March 2011