Latest Australian Research

The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.

Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.


14 September 2020

Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease

Aoun SM, Cafarella PA, Rumbold B, Thomas G, Hogden A, Jiang L, Gregory S, Kissane DW.

Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers.

An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia.

393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful.

This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.

7 September 2020

Access and referral to palliative care for patients with chronic heart failure: A qualitative study of healthcare professionals

Singh GK, Ramjan L, Ferguson C, Davidson PM, Newton PJ.

Palliative care for individuals with chronic heart failure is recommended for improving patients' symptoms, function and overall quality of life. Despite this mandate, there is limited access and referral to specialist palliative care for individuals with chronic heart failure.

To explore healthcare professionals' perspectives on access to palliative care for patients with chronic heart failure, focussing on patient, provider and system factors.

Cardiologists, palliative care specialists, heart failure nurses and palliative care nurses in acute and community care settings were interviewed using semi-structured interviews. Purposive and snowball sampling methods were used for recruitment. Interview data were analysed using thematic analysis. The COREQ checklist guided data collection and reporting.

There were 15 participants in the study, and the majority were female. Participants included palliative medicine physicians, a palliative care nurse consultant, cardiologists, a general practitioner and advanced heart failure nurses. The themes derived from the thematic analysis centred on patient, provider and system factors impacting access and referral to palliative care in the context of chronic heart failure. The patient themes were (a) patient and family preconception of palliative care and (b) patient's clinical profile influences referral. The provider themes were (a) conflict, (b) making decisions and (c) education needs, and the system themes were (a) accessing services and resources and (b) improving the model of care.

The patient's clinical profile, education needs of healthcare professionals and improving access to services and resources need to be considered to enhance palliative care access and referral as well as the interacting and influencing elements of the patient, provider and system.

7 September 2020

End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisation and unmet supportive care needs

Bernardes CM, Beesley V, Shahid S, Medlin L, Garvey G, Valery PC.

Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs.

To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life.

Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted.

In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%).

Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.

7 September 2020

Management of primary and metastatic malignant small bowel obstruction, operate or palliate. A systematic review

Banting SP, Waters PS, Peacock O, Narasimhan V, Lynch AC, McCormick JJ, Warrier SK, Heriot AG.

The management of patients presenting with malignant small bowel obstruction is a challenging paradigm. The aim of this systematic review was to examine different management strategies in these complex patients. The primary outcomes evaluated were the type of intervention, 30-day morbidity and mortality and overall survival rates.

A systematic literature review of EMBase, Medline, PubMed and the Cochrane Library was performed using Preferred Reporting Items for Systematic reviews and Meta-Analyses for studies reporting on conservative and operative management of malignant small bowel obstruction.

Fifteen studies (n = 882 patients) reporting on outcomes for malignant small bowel obstruction were analysed. Outcomes measured were primarily survival and relief of obstructive symptoms. The median age ranged from 52 to 66 years. The most common cause of malignant small bowel obstruction was gynaecological in nature (56%), followed by colorectal (19%). Four hundred and eighty-six patients underwent primary surgical management and the remaining 396 patients were assigned to non-surgical intervention. Median overall survival in the operative studies ranged from 2.5 to 7.4 months compared with 0.9 to 1.9 months (P < 0.05). The 30-day mortality ranged from 13% to 28% in those who underwent surgical interventions versus 2% to 61% in the non-surgical group (P = 0.09). No significant difference in median survival in gastrointestinal (GI) and gynaecological malignancies was observed (4.3 versus 5.0 months, P = 0.12). Morbidity ranged from 21% to 85% in the surgical group and 12% to 29% in the percutaneous groups (P < 0.05).

Surgical intervention in malignant small bowel obstruction is associated with significant morbidity, although it may improve survival in selected patients with gynaecological and colorectal malignancy. It is imperative that realistic goals and expectations are discussed with patients preoperatively.

7 September 2020

Does Resource Utilization Group-Activities of Daily Living Help Us Better Interpret Australian Karnofsky-Modified Performance Scale?

Morgan DD, Brown A, Cerdor PA, Currow DC.

No abstract available

7 September 2020

Community stakeholder and opinion formation toward end-of-life planning in Chinese community in Australia

Wang WY, Han GS, Forbes-Mewett H.

We examine the role of stakeholders in constructing new socio-cultural narratives of advance care planning in the Chinese community in Australia. Applying the communication theory of opinion leader(ship) and drawing on data from 41 interviews and field observation notes, we explore how stakeholders establish their authority and perform their expertise. Data analysis shows stakeholders have gained their opinion leadership status through demonstrating their ability to link the Chinese cultural values of family harmony and parental duty and the notions of self-empowerment and independence in official advance care planning promotions in Australia.

7 September 2020

Advance care planning in Australia during the COVID-19 outbreak: now more important than ever

Sinclair C, Nolte L, White BP, M Detering K.

The novel Coronavirus disease 2019 (COVID-19) outbreak has led to rapid and profound changes in healthcare system delivery and society more broadly. Older adults, and those living with chronic or life-limiting conditions, are at increased risk of experiencing severe or critical symptoms associated with COVID-19 infection and are more likely to die. They may also experience non-COVID-19 related deterioration in their health status during this period. Advance care planning (ACP) is critical for this cohort, yet there is no coordinated strategy for increasing the low rates of ACP uptake in these groups, or more broadly. This paper outlines a number of key reasons why ACP is an urgent priority, and should form a part of the health system's COVID-19 response strategy. These include reducing the need for rationing, planning for surges in healthcare demand, respecting human rights, enabling proactive care coordination and leveraging societal change. We conclude with key recommendations for policy and practice in the system-wide implementation of ACP, to enable a more ethical, coordinated and person-centred response in the COVID-19 context.

31 August 2020

The Voluntary Assisted Dying Law in Victoria - A Good First Step but Many Problems Remain

Savulescu J. 

In 2019, the Voluntary Assisted Dying Act 2017 (Vic) came into force. Thereupon, Victoria became the first State in Australia to enact such a law since the Commonwealth of Australia overturned Northern Territory legislation in 1997. Because of the difficulties in the introduction of Victorian law, it is extremely conservative, with many safeguards. There are significant limitations to this law which will result in significant ethical difficulties for medical practitioners and their patients. Four problematic areas of the law are discussed: the prohibition on health practitioners introducing the subject, introduction of the subject of voluntary assisted dying to patients; difficulties in obtaining access to treatment in certain populations in Victoria; the arbitrary minimum age of 18 to be able to access voluntary assisted dying; and the difficulties for patients and practitioners in evaluating the capacity of patients with mental illness and cognitive difficulties. Practical solutions to these difficulties will be proffered and discussed.

31 August 2020

Systems of Care in Crisis: The Changing Nature of Palliative Care During COVID-19

Chapman M, Russell B, Philip J.

Among the far-reaching impacts of COVID-19 is its impact on care systems, the social and other systems that we rely on to maintain and provide care for those with "illness." This paper will examine these impacts through a description of the influence on palliative care systems that have arisen within this pandemic. It will explore the impact on the meaning of care, how care is performed and identified, and the responses of palliative care systems to these challenges. It will also highlight the current and potential future implications of these dynamics within the unfolding crisis of this pandemic.

31 August 2020

Palliative and End-of-Life Care: Vital Aspects of Holistic Diabetes Care of Older People With Diabetes

Dunning TL.

Palliative and end-of-life care and advance care planning are important components of holistic diabetes management, especially for older people with a long duration of diabetes and comorbidities who experience unpleasant symptoms and remediable suffering. Many diabetes clinicians do not have conversations about advance care planning with people with diabetes, often because they are reluctant to discuss these issues and are not familiar with palliative care. This article outlines palliative, terminal, and end-of-life care for older people with type 1 or type 2 diabetes and suggests when to consider changing the focus on tight blood glucose control to a focus on safety and comfort. It proposes strategies to incorporate palliative and end-of-life care into personalized holistic diabetes care, determined with older people with diabetes and their families through shared decision-making.