Find out what Australian researchers are publishing in palliative care 

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.

29 November 2021

A qualitative study investigating Australian cancer service outpatients' experience of distress screening and management:

what is the personal relevance, acceptability and improvement opportunities from patient perspectives?

McCarter K, Carlson MA, Baker AL, Paul CL, Lynam J, Johnston LN, Fradgley EA.

Purpose: People diagnosed with cancer experience high distress levels throughout diagnosis, treatment, and survivorship. Untreated distress is associated with poor outcomes, including worsened quality of life and higher mortality rates. Distress screening facilitates need-based access to supportive care which can optimize patient outcomes. This qualitative interview study explored outpatients' perceptions of a distress screening process implemented in an Australian cancer center.

Methods: Adult, English-speaking cancer outpatients were approached to participate in face-to-face or phone interviews after being screened by a clinic nurse using the distress thermometer (DT). The piloted semi-structured interview guide explored perceptions of the distress screening and management process, overall well-being, psychosocial support networks, and improvement opportunities for distress processes. Thematic analysis was used.

Results: Four key themes were identified in the 19 interviews conducted. Distress screening was found to be generally acceptable to participants and could be conducted by a variety of health professionals at varied time points. However, some participants found "distress" to be an ambiguous term. Despite many participants experiencing clinical distress (i.e., DT ≥ 4), few actioned referrals; some noted a preference to manage and prevent distress through informal support and well-being activities. Participants' diverse coping styles, such as positivity, acceptance, and distancing, also factored into the perceived value of screening and referrals.

Conclusion and implications: Screening models only measuring severity of distress may not be sufficient to direct care referrals, as they do not consider patients' varying coping strategies, external support networks, understanding of distress terminology, and motivations for accessing supportive care services.

29 November 2021

Dying with dignity: the challenges of end-of-life care in patients with substance use disorders

Datta P, Kruk JS, Jordan K, Fisher KA. 

Substance use disorder is a chronic disease carrying a high risk of morbidity and mortality. We report a case of a patient on long-term opioid agonist treatment who was diagnosed with metastatic cholangiocarcinoma and was referred to palliative care services almost contemporaneously with this diagnosis. In this report, we explore the challenges posed in offering holistic care during the end of life of a patient with a history of opioid dependence. A coordinated approach by addiction medicine and palliative care teams can allow patients from this complex cohort to ultimately die with dignity.

29 November 2021

End-of-life care in emergency departments: A national cross-sectional survey of emergency care nurses

Aquino J, Crilly J, Ranse K.

Background: An ageing population and increasing chronicity of illness will likely contribute to increasing presentations to the emergency department (ED) by patients at the end-of-life (EOL). This study aimed to identify the self-reported EOL care practices of emergency care nurses and the factors influencing EOL care.

Methods: An online survey was distributed to Australian emergency care nurses in August, 2020. Statistical analyses were undertaken to identify the most frequently undertaken EOL practices and factors influencing practice.

Results: There were 178 responses to the survey (response rate 11.3%). The most frequently reported EOL practices were environmental modification (M=4.4/5, SD=0.4) and information sharing practices (M=4.4/5, SD=0.4). Emotional support practices were the least frequently reported practices by emergency care nurses (M=3.6/5, SD=0.9). Participants reported a lack of resources (M=2.4/5, SD=0.8) and opportunities to gain end-of-life care knowledge (M=2.9/5, SD=0.9). However, a generally positive attitude towards EOL care was indicated as participants reported strong agreement to palliative values (M=4.6/5, SD=0.4).

Conclusions: Results of this study suggest that most frequently reported EOL care practices of emergency care nurses require the least emotional engagement. The findings can inform areas of knowledge development and resources for emergency care nurses.

22 November 2021

Palliative care for adults with intellectual disability

Wallace RA.

Contemporary disability principles and values suggest that adults with intellectual disability should be able to access and participate in any mainstream service rather than having a separate service for them. In the case of healthcare services, achievement of optimal access to and participation in healthcare by adults with intellectual disability requires the presence of both adequate disability supports for the person and reasonable adjustments to generic health systems to enable a person-centred approach to care. Development of an interface between people with lived experience of intellectual disability, disability and health sectors help clarify the required nature of disability supports and types of adjustments to mainstream health services. The article describes a case study of an adult with intellectual disability with a serious illness warranting palliative care, and focusses on the reasonable adjustments to mainstream core palliative care principles for adults with intellectual disability.

22 November 2021

Demonstrating the importance of cultural considerations at end of life utilizing the perspective of Indian patients with cancer

Chittem M, Eliott J, Olver I. 

Purpose: This study aimed to understand Indian cancer patients' hopes and beliefs about the end of life, particularly focusing on how this informed their preferences regarding end-of-life treatment. In India, individuals' lives are mainly guided by culturally driven practices of doing right by one's family and believing death is predetermined.

Methods: Indian patients (25) diagnosed with advanced incurable cancer and aware of their prognosis participated in semi-structured interviews exploring their hopes as they approached the end of life. The interview also sought to understand patients' views and beliefs about do-not-resuscitate (DNR) orders and euthanasia. The interviews were transcribed and analysed using interpretative phenomenological analysis.

Results: Two major themes were identified: (i) a desire for living or dying comprising sub-themes of perceptions of current responsibilities, and having a fighting spirit versus feelings of despair, and (ii) God was the ultimate decision-maker of life and death. Furthermore, patients understood that a do-not-resuscitate order meant euthanasia and responded accordingly. Some patients reported hoping for death due to the pain and resultant suffering. However, patients did not talk about euthanasia openly, instead choosing to describe it within a larger framework of life and death.

Conclusions: Indian patients reaching the end of life valued their family responsibilities which determined their desire to live or die. However, all patients believed that God decided on their life and death. It is important to consider cultural perspectives on DNR or euthanasia and to address patients' pain management needs towards the end of life.

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Last updated 19 August 2021