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.
Williams O, Chur-Hansen A, Crawford GB.
Abstract: End-of-life care options in Australia, recently including Voluntary Assisted Dying (VAD), are available to people in prison. Little is known about how the public perceives this right. We aimed to identify the attitudes of the public by conducting a qualitative content analysis of comments across four Australian online news media outlets discussing the first case of a person in prison being granted VAD (a sexual offender). From 434 comments, we identified four overarching categories: not punished enough; unsupportive of VAD; approving of VAD; and negative characteristics of VAD recipient and other stakeholders involved. Most comments were punitive, highlighting the opinion that VAD was escaping punishment and reflected a tension between the rights of the individual versus the perceived rights of the community. We highlight the risks these attitudes can pose in terms of providing end-of-life care to people in prisons.
Chen X, Zhou W, Hoda R, Li A, Bain C, Poon P.
Introduction: Recent developments in the field of large language models have showcased impressive achievements in their ability to perform natural language processing tasks, opening up possibilities for use in critical domains like telehealth. We conducted a pilot study on the opportunities of utilizing large language models, specifically GPT-3.5, GPT-4, and LLaMA 2, in the context of zero-shot summarization of doctor-patient conversation during a palliative care teleconsultation.
Methods: We created a bespoke doctor-patient conversation to evaluate the quality of medical conversation summarization, employing established automatic metrics such as BLEU, ROUGE-L, METEOR, and BERTScore for quality assessment, and using the Flesch-Kincaid grade Level for readability to understand the efficacy and suitability of these models in the medical domain.
Results: For automatic metrics, LLaMA2-7B scored the highest in BLEU, indicating strong n-gram precision, while GPT-4 excelled in both ROUGE-L and METEOR, demonstrating its capability to capture longer sequences and semantic accuracy. GPT-4 also led in BERTScore, suggesting better semantic similarity at the token level compared to others. For readability, LLaMA 7B and LLaMA 13B produced summaries with Flesch-Kincaid grade levels of 11.9 and 12.6, respectively, which are somewhat more complex than the reference value of 10.6. LLaMA 70B generated summaries closest to the reference in simplicity, with a score of 10.7. GPT-3.5's summaries were the most complex at a grade level of 15.2, while GPT-4's summaries had a grade level of 13.1, making them moderately accessible.
Conclusion: Our findings indicate that all the models have similar performance for the palliative care consultation, with GPT-4 being slightly better at balancing understanding content and maintaining structural similarity to the source, which makes it a potentially better choice for creating patient-friendly medical summaries. Threats and limitations of such approaches are also embedded in our analysis.
Griffin CP, Carlson MA, Walker MM, Lynam J, Paul CL.
Background: Brain cancer is a devastating and incurable disease that places a high burden of care on next of kin (NOK). NOK can play a core role in supporting end-of-life planning, including the decision to donate one's brain after death. Postmortem brain donation is crucial to research. As postmortem programs develop it is important to understand the experiences of NOK as they support a loved one in the donation decision.
Methods: Thirteen qualitative interviews were completed with NOK of people who had consented to donate their brains to the Mark Hughes Foundation (MHF) Biobank. A thematic analysis was carried out on the transcribed interviews.
Results: Four central themes were identified: (i) The carer role has additional responsibilities and psychological benefits when brain donation is being considered; (ii) Supporting a loved one to donate requires mutual trust, understanding, and a commitment to honor agency; (iii) Increasing awareness of brain donation is a priority for NOK, and (iv) Brain donation is seen as a natural continuation of the donor's altruistic values.
Conclusion: When a person with brain cancer decides to donate their brain to research, their NOK can experience additional burdens and benefits as the NOK-patient relationship evolves. Understanding this evolution and recognizing the importance of trust, advocacy, and altruism provides a guide for the integration of brain donation programs into clinical pathways and a basis for normalizing brain donation as an extension of organ donation frameworks.
Iten R, O'Connor M, Gill FJ.
Background: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative care service consultation.
Objective: To synthesise the literature for how palliative care is delivered for infants aged less than 12 months with life-limiting conditions.
Methods: An integrative review design. MEDLINE, CINAHL, ProQuest, Cochrane, Joanna Briggs Institute and EMBASE were searched for research published in English language, from 2010 to 2022, and peer reviewed. Critical appraisal was completed for 26 patient case series, 9 qualitative, 5 cross-sectional and 1 quality improvement study. Data analysis involved deductive content analysis and narrative approach to summarise the synthesised results.
Results: 37 articles met the eligibility for inclusion. Two models of palliative care delivery were examined, demonstrating differences in care received and experiences of families and health professionals. Health professionals reported lack of palliative care education, challenges for delivering palliative care in intensive care settings and barriers to advance care planning including prognostic uncertainty and transitioning to end-of-life care. Families reported positive experiences with specialist palliative care services and challenges engaging in advance care planning discussions.
Conclusion: There are complex issues surrounding the provision of palliative care for infants. Optimal palliative care should encompass a collaborative and coordinated approach between the primary healthcare teams and specialist palliative care services and prioritisation of palliative care education for nurses and physicians involved in providing palliative care to infants.
O'Neill K, Bloomer MJ.
Background: Cultural diversity is increasing worldwide. The provision of end-of-life care for people who have culturally diverse rituals, customs and beliefs can present barriers for critical care nurses in delivering high quality end-of-life care.
Aim: To synthesise research evidence about the perceived barriers for critical care nurses providing end-of-life care for patients and their families from diverse cultural backgrounds in ICU.
Research question: What are the perceived barriers for nurses providing end-of-life care for patients and their families from culturally diverse backgrounds in ICU?
Design: Following protocol registration, a structured integrative review was undertaken across Medline, Embase, APA PsycINFO, CINAHL Complete, Cochrane library, Google Scholar and ProQuest Dissertation and Theses Global databases. A total of 823 records were independently assessed against inclusion and exclusion criteria. All included studies were assessed for quality. Narrative synthesis was used to report findings.
Results: Fifteen studies published between 2010 and 2022 were included. Findings are presented according to four themes: (i) Language and communication, (ii) (Dis) Comfort with religion, (iii) Consensus challenges and (iv) Caring at the end of life.
Conclusion: Recognising cultural diversity provides opportunity for critical care nurses to build awareness and understanding of cultural diversity as a way of optimising end-of-life care, through routine cultural assessment, advocating for professional interpreters to enhance communication and demonstrating openness to diverse cultural needs, preferences and practices.
Implications for practice: The obvious first step in countering perceived challenges to end-of-life care is to increase awareness by acknowledging and respecting difference and diversity. Cultural assessments for all patients admitted to critical care would be an ideal first step in addressing challenges associated with cultural diversity. Greater access to professional interpreters to overcome language barriers is also essential to optimising communication and consensus in decision-making at the end of life.
Last updated 30 April 2024