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.

 

23 November 2020

Management of melanoma brain metastases: Evidence-based clinical practice guidelines by Cancer Council Australia

Hong AM, Waldstein C, Shivalingam B, Carlino MS, Atkinson V, Kefford RF, McArthur GA, Menzies AM, Thompson JF, Long GV.

Introduction:
The brain is a common site of metastatic disease for patients with advanced melanoma. Brain metastasis portends a poor prognosis, often causing deterioration in neurological function and quality of life, and leading to neurological death. Treatment approaches including surgery, radiotherapy and systemic therapy can lead to better control of this problem. Therefore, appropriate guidelines for the management of melanoma brain metastases need to be established, with regular updating when new treatment options become available.

Methods:
A multidisciplinary working party established by Cancer Council Australia has produced up-to-date, evidence-based clinical practice guidelines for the management of melanoma. After selecting key clinical questions, a comprehensive literature search for relevant studies was conducted, followed by systematic review of those studies. Data were summarised and the evidence was assessed, leading to the development of recommendations.

Main recommendations:
Symptomatic lesions are best treated with surgery, when possible; this provides safe and effective local control. For patients with single or a small number of asymptomatic brain metastases, stereotactic radiotherapy is recommended, but in asymptomatic patients who have not previously received systemic treatment, drug therapy can be considered as a first-line treatment option. Whole brain radiotherapy may provide palliative benefits in patients with multiple brain metastases. Whenever possible, melanoma patients with brain metastases should be managed by a multidisciplinary team of melanoma specialists that considers the optimal combination and sequencing of surgery, radiotherapy and systemic therapy.

23 November 2020

Nurses' intentions to respond to requests for legal assisted-dying: A Q-methodological study

Wilson MR, Wiechula R, Cusack L, Wilson M.

Aims:
To explore the intentions of nurses to respond to requests for legal assisted-dying.

Background:
As more Western nations legalize assisted-dying, requests for access will increase across clinical domains. Understanding the intentions of nurses to respond to such requests is important for the construction of relevant policy and practice guidelines.

Design:
Mixed-methods.

Data sources:
A total of 45 Australian nurses from aged, palliative, intensive, or cancer care settings surveyed in November 2018.

Method:
Q-methodology studying nurses' evaluations of 49 possible responses to a request for a hastened death. Data consisted of rank-ordered statements analysed by factor analysis with varimax rotation.

Findings:
Four distinct types of intentions to respond to requests for assisted-dying: a) refer and support; b) object to or deflect the request; c) engage and explore the request; or d) assess needs and provide information.

Conclusion:
The findings underscore the complexity of intentionality in assisted-dying nursing practice and differences from other forms of end-of-life care, particularly regarding patient advocacy and conscientious objection. This study enables further research to explore determinants of these intentions. It can also assist the development of professional guidance by linking policy and clinical intentions.

Impact:
Identified a basic range of nurses' intentions to respond to requests for assisted-dying, as there was no evidence at present. Developed a fourfold typology of intentions to respond with most nurses intending to engage in practices that support the requestor and sometimes the request itself. A minority would object to discussing the request. The relatively low level of advocacy within the intended responses selected also is distinctly different from other end-of-life care research findings. This research could assist nursing associations in jurisdictions transitioning to legal assisted-dying to develop guidance ways nurses can frame their responses to requests.

23 November 2020

The participation of people with dementia in the planning of their care and support: An integrative literature review

Read ST, Toye C, Wynaden D.

No abstract available

16 November 2020

Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study

Rodi H, Detering K, Sellars M, Macleod A, Todd J, Fullerton S, Waller A, Nolte L.

Purpose:
To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia.

Methods:
Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey.

Results:
Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region.

Conclusion:
Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.

16 November 2020

What Matters? Palliative Care, Ethics, and the COVID-19 Pandemic

Sheahan L, Brennan F. 

As is often the case in clinical ethics, the discourse in COVID-19 has focused primarily on difficult and controversial decision-making junctures such as how to decide who gets access to intensive care resources if demand outstrips supply. However, the lived experience of COVID-19 raises less controversial but arguably more profound moral questions around what it means to look after each other through the course of the pandemic and how this translates in care for the dying. This piece explores the interface between the pandemic, ethics, and the role of palliative care. We argue that the ethical discourse should be broader, and that the principles that underly the discipline of palliative care provide a solid ethical foundation for the care of all patients through the coronavirus pandemic.

9 November 2020

The effect of bereavement on cognitive functioning among elderly people: Evidence from Australia

Atalay K, Staneva A.

This paper explores the effects of experiencing the death of a spouse, relative or close friend on cognitive functioning of Australian elderly. Using rich longitudinal data, we show that experiencing a loss is associated with a modest decline in cognitive function. Our results show that on average the effects are more pronounced for males and the strongest effects are associated with the loss of the spouse or a close friend. These events have significant effects on working memory and speed of information processing. We show that the decrease in cognitive functioning is accompanied by decreases in engagement in cognitive activities and declines in socialization. Our results are suggestive that programmes to support grieving individuals, including support for socialization activities, and extending active aging programmes could be important for promoting successful cognitive aging for the growing population of older adults.

9 November 2020

The level of distress from fatigue reported in the final two months of life by a palliative care population; An Australian national prospective, consecutive case series

Ingham G, Urban K, Allingham SF, Blanchard M, Marston C, Currow DC.

Context:
Fatigue is the most commonly reported symptom in life-limiting illnesses, though not much is known about the distress it causes patients as they approach death.

Objectives:
To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death.

Methods:
A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between 1 July 2013 and 31 December 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status.

Results:
A total of 116,604 patients from 203 specialist palliative care services were analysed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and non-malignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced.

Conclusions:
Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority.

9 November 2020

'Supportive and Palliative Care Indicators Tool (SPICT) improves renal nurses' confidence in recognising patients approaching end of life'

Lunardi L, Hill K, Crail S, Esterman A, Le Leu R, Drummond C.

Background:
Identification of people with deteriorating health is essential for quality patient-centred care and optimal management. The Supportive and Palliative Care Indicators Tool (SPICT) is a guide to identifying people with deteriorating health for care planning without incorporating a prognostic time frame.

Objectives:
To improve renal nursing staff confidence in identifying patients approaching end-of-life and advocate for appropriate multidisciplinary care planning.

Design:
This pilot feasibility prospective cohort study conducted in the renal ward of a major metropolitan health service during 2019 included a preintervention/postintervention survey questionnaire. A programme of education was implemented training staff to recognise end-of-life and facilitate appropriate care planning.

Results:
Several domains in the postintervention survey demonstrated a statistically significant improvement in renal nurses' perception of confidence in their ability to recognise end of life. Of the 210 patients admitted during the study period, 16% were recognised as SPICT positive triggering renal physicians to initiate discussions about end-of-life care planning with patients and their families and to document a plan. Six months poststudy, 72% of those patients recognised as SPICT positive had died with a documented plan of care in place.

Conclusion:
The use of SPICT for hospital admissions and the application of education in topics related to end-of-life care resulted in a significant improvement in nurses' confidence in recognising deteriorating and frail patients approaching their end of life. The use of this tool also increased the number of deteriorating patients approaching end of life with goals of care documented.

9 November 2020

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

McKibben L, Brazil K, McLaughlin D, Hudson P.

Objectives:
People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care.

Methods:
A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals' (n = 28) perceptions of informational needs were explored within focus groups (n = 6).

Results:
Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model.

Significance of results:
New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

9 November 2020

Health-related quality of life in patients with inoperable malignant bowel obstruction: secondary outcome from a double-blind, parallel, placebo-controlled randomised trial of octreotide

McCaffrey N, Asser T, Fazekas B, Muircroft W, Agar M, Clark K, Eckermann S, Lee J, Joshi R, Allcroft P, Sheehan C, Currow DC.

Background:
This analysis aims to evaluate health-related quality of life (HrQoL) (primary outcome for this analysis), nausea and vomiting, and pain in patients with inoperable malignant bowel obstruction (IMBO) due to cancer or its treatments randomised to standardised therapies plus octreotide or placebo over a maximum of 72 h in a double-blind clinical trial.

Methods:
Adults with IMBO and vomiting recruited through 12 services spanning inpatient, consultative and community settings in Australia were randomised to subcutaneous octreotide infusion or saline. HrQoL was measured at baseline and treatment cessation (EORTC QLQ-C15-PAL). Mean within-group paired differences between baseline and post-treatment scores were analysed using Wilcoxon Signed Rank test and between group differences estimated using linear mixed models, adjusted for baseline score, sex, age, time, and study arm.

Results:
One hundred six of the 112 randomised participants were included in the analysis (n = 52 octreotide, n = 54 placebo); 6 participants were excluded due to major protocol violations. Mean baseline HrQoL scores were low (octreotide 22.1, 95% CI 14.3, 29.9; placebo 31.5, 95% CI 22.3, 40.7). There was no statistically significant within-group improvement in the mean HrQoL scores in the octreotide (p = 0.21) or placebo groups (p = 0.78), although both groups reported reductions in mean nausea and vomiting (octreotide p < 0.01; placebo p = 0.02) and pain scores (octreotide p < 0.01; placebo p = 0.03). Although no statistically significant difference in changes in HrQoL scores between octreotide and placebo were seen, an adequately powered study is required to fully assess any differences in HrQoL scores.

Conclusion:
The HrQoL of patients with IMBO and vomiting is poor. Further research to formally evaluate the effects of standard therapies for IMBO is therefore warranted.

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