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.
Fernandes BR, Newton JA, Betts K, Sheehan C.
Background: Patients with end-stage heart failure experience a significant symptom burden that is often poorly controlled. Although palliative care can improve symptom management and reduce hospital admissions, many patients still die in acute care settings. The unpredictable course of end-stage heart failure complicates the identification of patients who would benefit from early palliative care referral. To address this challenge, an integrated cardiac supportive care service was developed to engage these patients early, optimise symptom control, and ensure timely access to palliative care.
Aim: The aim of this study is to document the symptom burden, using Patient-Reported Outcome Measures, for patients with end-stage heart failure on admission to the cardiac supportive care service.
Method: A prospective observational study was undertaken in a tertiary hospital service in Sydney, Australia between January 2020 and July 2022. Patients were included if they had a recent admission for heart failure or had heart failure with breathlessness or chest pain at rest or on minimal effort. The cardiac supportive care service, consisting of initial home visits and follow-up reviews conducted by a palliative care physician and cardiac nurse practitioner, collected information using the Dyspnoea-12 (D-12) Questionnaire and the Integrated Palliative Care Outcome Scale (IPOS). Symptom scores from these tools were analysed in relation to patient mortality, with Kaplan-Meier survival curves and Cox regression used to assess the association between symptom burden and time to death.
Results: A total of 114 patients were included in this study. Both the IPOS and D-12 scores indicated a substantial and clinically relevant symptom burden for this cohort of patients. High mean scores on the IPOS were observed for weakness (2.6, standard deviation [SD] 1.2), shortness of breath (2.6, SD 1.2), and sore/dry mouth (2.5, SD 1.3). Sore/dry mouth was the most frequent severe or overwhelming symptom (59%). The D-12 showed that descriptors of breathlessness most commonly rated as severe were "My breathing is exhausting" (40%), "My breathing is distressing" (39%), and "I feel short of breath" (38%). Patients with an IPOS score in the highest quartile had an elevated mortality risk. The survival of patients in this cohort was 17.1 months.
Conclusions: Patients with end-stage heart failure experience a substantial and frequently severe symptom burden, including breathlessness, dry mouth, and weakness. This study demonstrates the significant unmet need in this patient population and highlights the opportunity for integrated and proactive palliative care, delivered through a cardiac supportive care service. This model of care can optimise symptom management, facilitate advance care planning, and ensure timely referral to palliative care.
Lewis S, Franklin M, Newton G, Kenny K, Boyle F, Smith A.
Abstract: Understandings of living well with incurable, life-limiting disease are limited. This article examines how living with a 'contracted future', albeit of uncertain duration, affects how one spends time (wisely) in the present and plans future time. Mobilising the concept of timescapes and interviews with women with metastatic breast cancer, we examined how an incurable prognosis shaped how women experienced time, what meanings they ascribed to time and at what cost. Thematic analysis derived five themes: 'quality time'-the imperative to spend time well; 'out-of-sync timing'-experiencing temporal disconnect with others; 'making time'-motivation to extend their time through treatments; 'time mis/calculations'-planning amid uncertain certainty; and 'the tempo of living beyond prognosis'-responding to initial contraction and subsequent expansion of temporal horizons. Our analyses reveal how pressures to live well, die well and be remembered well complicated women's experiences of how to be in the present and future, incurring substantial social and economic costs. We illuminate how the quest for improved quality of life and extended longevity can result in emotional and financial precarity, experienced most profoundly by those with limited economic resources, revealing the economic and social factors that shape how time is spent well by those with metastatic disease.
Last updated 30 April 2024