Consensus palliative care referral criteria for people with chronic obstructive pulmonary disease.

OBJECTIVE: People with advanced chronic obstructive pulmonary disease (COPD) have substantial palliative care needs, but uncertainty exists around appropriate identification of patients for palliative care referral.We conducted a Delphi study of international experts to identify consensus referral criteria for specialist outpatient palliative care for people with COPD. METHODS: Clinicians in the fields of respiratory medicine, palliative and primary care from five continents with expertise in respiratory medicine and palliative care rated 81 criteria over three Delphi rounds. Consensus was defined a priori as ≥70% agreement. A criterion was considered 'major' if experts endorsed meeting that criterion alone justified palliative care referral. RESULTS: Response rates from the 57 panellists were 86% (49), 84% (48) and 91% (52) over first, second and third rounds, respectively. Panellists reached consensus on 17 major criteria for specialist outpatient palliative care referral, categorised under: (1) 'Health service use and need for advanced respiratory therapies' (six criteria, eg, need for home non-invasive ventilation); (2) 'Presence of symptoms, psychosocial and decision-making needs' (eight criteria, eg, severe (7-10 on a 10 point scale) chronic breathlessness); and (3) 'Prognostic estimate and performance status' (three criteria, eg, physician-estimated life expectancy of 6 months or less). CONCLUSIONS: International experts evaluated 81 potential referral criteria, reaching consensus on 17 major criteria for referral to specialist outpatient palliative care for people with COPD. Evaluation of the feasibility of these criteria in practice is required to improve standardised palliative care delivery for people with COPD.

Top Ten Tips Palliative Care Clinicians Should Know About Designing a Clinical Trial in Palliative Care.

The palliative care field is experiencing substantive growth in clinical trial-based research. Randomized controlled trials provide the necessary rigor and conditions for assessing a treatment's efficacy in a controlled population. It is therefore important that a trial is meticulously designed from the outset to ensure the integrity of the ultimate results. In this article, our team discusses ten tips on clinical trial design drawn from collective experiences in the field. These ten tips cover a range of topics that can prove challenging in trial design, from developing initial methodologies to planning sample size and powering the trial, as well as collaboratively navigating the ethical issues of trial initiation and implementation as a cohesive team. We aim to help new researchers design sound trials and continue to grow the evidence base for our specialty. The guidance provided here can be used independently or in addition to the ten tips provided by this team in a separate article focused on what palliative care clinicians should know about interpreting a clinical trial.

Improving the Well-Being of People With Advanced Cancer and Their Family Caregivers: Protocol for an Effectiveness-Implementation Trial of a Dyadic Digital Health Intervention (FOCUSau).

BACKGROUND: Advanced cancer significantly impacts patients' and family caregivers' quality of life. When patients and caregivers are supported concurrently as a dyad, the well-being of each person is optimized. Family, Outlook, Communication, Uncertainty, Symptom management (FOCUS) is a dyadic, psychoeducational intervention developed in the United States, shown to improve the well-being and quality of life of patients with advanced cancer and their primary caregivers. Originally, a nurse-delivered in-person intervention, FOCUS has been adapted into a self-administered web-based intervention for European delivery. OBJECTIVE: The aims of this study are to (1) adapt FOCUS to the Australian context (FOCUSau); (2) evaluate the effectiveness of FOCUSau in improving the emotional well-being and self-efficacy of patients with advanced cancer and their primary caregiver relative to usual care control group; (3) compare health care use between the intervention and control groups; and (4) assess the acceptability, feasibility, and scalability of FOCUSau in order to inform future maintainable implementation of the intervention within the Australian health care system. METHODS: FOCUS will be adapted prior to trial commencement, using an iterative stakeholder feedback process to create FOCUSau. To examine the efficacy and cost-effectiveness of FOCUSau and assess its acceptability, feasibility, and scalability, we will undertake a hybrid type 1 implementation study consisting of a phase 3 (clinical effectiveness) trial along with an observational implementation study. Participants will include patients with cancer who are older than 18 years, able to access the internet, and able to identify a primary support person or caregiver who can also be approached for participation. The sample size consists of 173 dyads in each arm (ie, 346 dyads in total). Patient-caregiver dyad data will be collected at 3 time points-baseline (T0) completed prerandomization; first follow-up (T1; N=346) at 12 weeks post baseline; and second follow-up (T2) at 24 weeks post baseline. RESULTS: The study was funded in March 2022. Recruitment commenced in July 2024. CONCLUSIONS: If shown to be effective, this intervention will improve the well-being of patients with advanced cancer and their family caregivers, regardless of their location or current level of health care support. TRIAL REGISTRATION: ClinicalTrials.gov NCT06082128; https://clinicaltrials.gov/study/NCT06082128. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/55252.

Correlation of Imaging and Hemodynamic Findings with Clinical Outcomes for Diagnosis of Left Renal Vein Compression Syndrome.

PURPOSE: Left renal vein compression syndrome (LRVCS) remains a challenging diagnosis. This study aimed to correlate imaging and hemodynamic findings with clinical outcomes for patients with LRVCS. MATERIALS AND METHODS: A retrospective review of 66 renal venography procedures with or without intravascular ultrasound (IVUS) was performed from 2017 to 2023 at a single institution. Patients with prior LRVCS treatment or other indications were excluded (n = 11). Primary outcome measure was correlation of catheter-based endovascular (CBE) findings with clinical outcomes (n = 55). Secondary outcome measures included correlation of CBE findings and LRV (i.e., beak) angle > 32°, beak sign, aortomesenteric angle (AMA < 41°), and hilar-to-aortomesenteric ratio (HTAMR ≥ 4.9) on cross sectional imaging. Descriptive statistics, chi-square testing, and ROC analyses were used. RESULTS: Of the 55 patients, 52 (94.5%) were females (median age 31, range 14-72) and 56.4% (n = 31) had a diagnosis of LRVCS on CBE evaluation. A renocaval pressure gradient of ≥ 3 mmHg, presence of collaterals, and > 50% area stenosis on IVUS were significantly associated with CBE diagnosis of LRVCS (p < 0.001). Surgical treatment (renal autotransplantation or LRV transposition) was recommended to all patients with CBE diagnosis of LRVCS (n = 31). 81.2% (18/22) of patients who underwent surgery reported symptom resolution or improvement. When the cross sectional imaging measurements were compared with CBE evaluation, AMA was the most sensitive (100%), HTAMR and beak sign were highly specific (93.3%), and beak angle was the most predictive (77.4% sensitivity; 86.7% specificity). CONCLUSION: CBE diagnosis of LRVCS was highly predictive of surgical candidacy and post-surgical symptom resolution. The presence of collaterals, > 50% area stenosis on IVUS, or a renocaval pressure gradient ≥ 3 mmHg had a significant association with a CBE diagnosis of LRVCS.

Top Ten Tips Palliative Care Clinicians Should Know About Interpreting a Clinical Trial.

Evidence-based practice is foundational to high-quality palliative care delivery. However, the clinical trials that compose the evidence base are often methodologically imperfect. Applying their conclusions without critical application to the clinical practice context can harm patients. The tips provided can help clinicians infer judiciously from clinical trial results and avoid credulously accepting findings without critique. We suggest that statistical and mathematical expertise is unnecessary, but rather a keen curiosity about investigators' rationale for certain design choices and how these choices can affect results is key. For a more comprehensive understanding of clinical trials, this article can be used with the authors' corresponding ten tips article that focuses on designing a clinical trial.

Examining the Case for Palliative Care in Patients With Systemic Sclerosis.

Systemic sclerosis (SSc) is a complex, multiorgan disease that causes substantial and progressive symptoms and impairs quality of life. International guidelines recommend early, integrated palliative care for patients with advanced cardiopulmonary disease, such as heart failure and interstitial lung disease, as this care can improve patient, caregiver, and healthcare outcomes. In this article, we examine the potential need and role for palliative care in SSc. We propose that early, integrated palliative care could improve symptom control and quality of life and recommend a research agenda for palliative care in SSc to address the lack of evidence in this area.

Opioid initiation timing and palliative care referrals in advanced cancer: retrospective study.

OBJECTIVES: Early opioid initiation is recommended for advanced cancer pain, however the timing of opioid commencement in relation to diagnosis has not been described, and the role of palliative care prescribers is unclear. This study aims to determine the timing of opioid initiation by prescriber and cancer type in relation to key timepoints in the cancer illness course (diagnosis, palliative care referral and death). METHODS: This retrospective cohort study included patients at a quaternary cancer centre with incurable advanced cancer of five different subtype groups. Demographics, clinical characteristics, health service use and details of first slow and immediate release opioid prescription are reported. RESULTS: Among 200 patients, median time to first immediate release opioid prescription was 23 days (IQR 1-82) and to slow release opioid prescription was 47 days (IQR 14-155). Most patients (95%, (n=190) were referred to palliative care (median time to referral 54 days (IQR 18-190)). Non-palliative care prescribers initiated slow release opioids for half the cohort (49%, n=97) prior to referral. Patients with pancreatic cancer had the shortest time to slow/immediate release opioid prescription (median 10 days (IQR 0-39) and 26 days (IQR 1-43) respectively) and shortest survival (median 136 days (IQR 82-214)). CONCLUSIONS: Median time to opioid commencement was approximately 3 weeks after diagnosis. Despite early palliative care involvement, opioid initiation by non-palliative care clinicians was common and remains important. Timely palliative care referral for those with pancreatic cancer may include consideration of earlier complex pain presentations and shorter prognosis.

Support needs of Australians bereaved during the COVID-19 pandemic: A cross-sectional survey study.

BACKGROUND: COVID-19 disrupted access to bereavement support. The objective of this study was to identify the bereavement supports used by Australians during the COVID-19 pandemic, perceived helpfulness of supports used, prevalence and areas of unmet support need, and characteristics of those with unmet support needs. METHODS: A convenience sample of bereaved adults completed an online questionnaire (April 2021-April 2022) about their bereavement experiences including support use and perceived helpfulness, unmet support needs and mental health. Multiple logistic regression was conducted to determine sociodemographic correlates of unmet needs. Open-ended responses were examined using content analysis to determine key themes. RESULTS: 1,878 bereaved Australians completed the questionnaire. Participants were mostly women (94.9%) living in major cities (68%) and reported the death of a parent (45%), with an average age of 55.1 years (SD = 12.2). The five most used supports were family and friends, self-help resources, general practitioners, psychologists, and internet/online community groups. Notably, each was nominated as most helpful and most unhelpful by participants. Two-thirds (66%) reported specific unmet support needs. Those with unmet needs scored lower on mental health measures. Correlates of unmet needs included being of younger age, being a spouse or parent to the deceased; reporting more impacts from public health measures, and not reporting family and friends as supports. The most frequent unmet need was for social support after the death and during lockdown. CONCLUSIONS: This study demonstrates the complexity of bereavement support needs during a pandemic. Specialised grief therapy needs to be more readily available to the minority of grievers who would benefit from it. A clear recommendation for a bereavement support action plan is to bolster the ability of social networks to provide support in times of loss. The fostering of social support in the wake of bereavement is a major gap that needs to be addressed in practice, policy, and research.

Medicinal Cannabis (MedCan 3): a randomised, multicentre, double-blind, placebo-controlled trial to assess THC/CBD (1:20) to relieve symptom burden in patients with cancer-a study protocol for a randomised controlled trial.

BACKGROUND: Distressing symptoms are common in advanced cancer. Medicinal cannabinoids are commonly prescribed for a variety of symptoms. There is little evidence to support their use for most indications in palliative care. This study aims to assess a 1:20 delta-9-tetrahydrocannabinol/cannabidiol (THC/CBD) cannabinoid preparation in the management of symptom distress in patients with advanced cancer undergoing palliative care. METHODS AND DESIGN: One hundred and fifty participants will be recruited across multiple sites in Queensland, Australia. A teletrial model will facilitate the recruitment of patients outside of major metropolitan areas. The study is a pragmatic, multicenter, randomised, placebo-controlled, two-arm trial of escalating doses of an oral 1:20 THC/CBD medicinal cannabinoid preparation (10 mg THC:200 mg CBD/mL). It will compare the efficacy and safety outcomes of a titrated dose range of 2.5 mg THC/50mgCBD to 30 mg THC/600 mg CBD per day against a placebo. There is a 2-week patient-determined titration phase, to reach a dose that achieves symptom relief or intolerable side effects, with a further 2 weeks of assessment on the final dose. The primary objective is to assess the effect of escalating doses of a 1:20 THC/CBD medicinal cannabinoid preparation against placebo on change in total symptom distress score, with secondary objectives including establishing a patient-determined effective dose, the effect on sleep quality and overall quality of life. Some patients will be enrolled in a sub-study which will more rigorously evaluate the effect on sleep. DISCUSSION: MedCan-3 is a high-quality, adequately powered, placebo-controlled trial which will help demonstrate the utility of a THC:CBD 1:20 oral medicinal cannabis product in reducing total symptom distress in this population. Secondary outcomes may lead to new hypotheses regarding medicinal cannabis' role in particular symptoms or in particular cancers. The sleep sub-study will test the feasibility of using actigraphy and the Insomnia Severity Index (ISI) in this cohort. This will be the first large-scale palliative care randomised clinical trial to utilise the teletrial model in Australia. If successful, this will have significant implications for trial access for rural and remote patients in Australia and internationally. TRIAL REGISTRATION: ANZCTR ACTRN12622000083796 . Protocol number 001/20. Registered on 21 January 2022. Recruitment started on 8 August 2022.

Quantifying the Need for Specialist Palliative Care Management in Patients With Systemic Sclerosis.

OBJECTIVE: The importance of early integration of palliative care in the management of complex multisystem diseases has been recognized. In this study, we aimed to quantify the need for specialist palliative care in patients with systemic sclerosis (SSc). METHODS: Using data from 875 patients enrolled in the Australian Scleroderma Cohort Study, we defined the need for palliative care as a high symptom burden at two or more consecutive study visits, at ≥50% of overall study visits, or at the study visit immediately before death. Symptoms of interest included breathlessness, fatigue, pain, depression, anxiety, constipation, and diarrhea. Logistic regression analyses evaluated the association between individual symptoms and SSc manifestations. Linear regression analysis evaluated the relationship between palliative care needs and quality of life (QoL) and function. RESULTS: Almost three-quarters of patients (72.69%) met the threshold for specialist palliative care needs. Severe fatigue (54.17%) was most common, followed by breathlessness (23.66%) and severe constipation (21.14%). Concurrent severe symptoms were frequently observed. Severe breathlessness (coefficient [coef] -7.95, P < 0.01) and pain (coef -7.70, P < 0.01) were associated with the largest reductions in physical QoL. Severe mood symptoms were associated with the greatest reduction in mental QoL (coef -12.91, P < 0.01). Severe pain (coef 0.56, P < 0.01), breathlessness (coef 0.49, P < 0.01), and mood symptoms (coef 0.40, P < 0.01) had a significant impact on function. CONCLUSION: SSc is frequently associated with multiple severe symptoms that may be amenable to palliative care intervention. Given the strong association between symptom burden and impaired QoL targeted, effective symptom management in parallel with standard-of-care treatments may improve overall patient outcomes.

Attitudes to End-of-Life Care and Voluntary Assisted Dying Amongst Members of the Australian Jewish community.

The implementation of voluntary assisted dying (VAD) in the Australian State of Victoria in 2019 has stimulated discussions about end-of-life care and dying in many communities. Various attempts have been made to represent the attitudes of the Jewish community, a distinct culturally and linguistically diverse (CALD) group, in terms that suggest a unified set of opinions that opposes VAD policies. This research aimed to explore attitudes to VAD in the context of end-of-life care held by members of the Victorian Jewish community. A descriptive qualitative methodological design was employed. Ten Victorians who identify as Jewish were recruited and participated in in-depth, semi-structured interviews. Reflexive thematic analysis was carried out on the transcripts to identify key themes, attitudes and preferences in relation to end-of-life care, death and dying, and VAD. Three themes were identified: "complexity and variation", "similarities", and "factors influencing attitudes to VAD and end-of-life care". A significant degree of diversity was apparent, ranging from highly supportive of VAD to advocacy for a total repeal of the policy. The results indicate that images of how Victorian Jewish individuals feel towards VAD based on essentialised notions about the community and belief systems are not supported by the evidence. In reality, considerable diversity of attitudes exists towards VAD and end-of-life care. We conclude that it is important that policymakers and members of the broader society avoid stereotypes that falsely characterise this specific community and, by implication, other CALD groups, particularly in terms that ignore internal diversity regarding belief systems, social attitudes and ethical perspectives.

Palliative Approach Remains Lacking in Terminal Hospital Admissions for Chronic Disease Across Rural Settings: Multisite Retrospective Medical Record Audit.

INTRODUCTION/AIM: Despite clear benefit from palliative care in end-stage chronic diseases, access is often limited, and rural access largely undescribed. This study sought to determine if a palliative approach is provided to people with chronic disease in their terminal hospital admission. METHODS: Multisite, retrospective medical record audit, of decedents with a primary diagnosis of chronic lung, heart, or renal failure, or multimorbidity of these conditions over 2019. RESULTS: Of 241 decedents, across five clinical sites, 143 (59.3%) were men, with mean age 80.47 years (SD 11.509), and diagnoses of chronic lung (n = 56, 23.2%), heart (n = 56, 23.2%), renal (n = 24, 10.0%) or multimorbidity disease (n = 105, 43.6%), and had 2.88 (3.04SD) admissions within 12 months. Outpatient chronic disease care was evident (n = 171, 73.7%), however, contact with a private physician (n = 91, 37.8%), chronic disease program (n = 61, 25.3%), or specialist nurse (n = 17, 7.1%) were less apparent. "Not-for-resuscitation" orders were common (n = 139, 57.7%), however, advance care planning (n = 71, 29.5%), preferred place of death (n = 18, 7.9%), and spiritual support (n = 18, 7.5%) were rarely documented. Referral to and input from palliative services were low (n = 74, 30.7% and n = 49, 20.3%), as was review of nonessential medications or blood tests (n = 86, 35.7%, and n = 78, 32.4%). Opioids were prescribed in 45.2% (n = 109). Hospital site and diagnosis were significantly associated with outpatient care and palliative approach (P<0.001). CONCLUSIONS: End-of-life planning and specialist palliative care involvement occurred infrequently for people with chronic disease who died in rural hospitals. Targeted strategies are necessary to improve care for these prevalent and high needs rural populations.

Introducing palliative care in advanced cancer: a systematic review.

BACKGROUND: Negative perceptions about palliative care (PC), held by patients with cancer and their families, are a barrier to early referral and the associated benefits. This review examines the approaches that support the task of introducing PC to patients and families and describes any evaluations of these approaches. METHODS: A systematic review with a systematic search informed by the Preferred Reporting Items for Systemic Reviews and Meta-Analyses guidelines was performed on the online databases MEDLINE, PsychInfo and CINAHL from May 2022 to July 2022. Identified studies were screened by title and abstract, and included if they were empirical studies and described an approach that supported the introduction of PC services for adult patients. A narrative-synthesis approach was used to extract and present the findings. RESULTS: Searches yielded 1193 unique manuscripts, which, following title and abstract screening, were reduced to 31 papers subject to full-text review, with a final 12 studies meeting eligibility criteria. A diverse range of included studies described approaches used to introduce palliative care, which may be broadly summarised by four categories: education, clinical communication, building trust and rapport and integrative system approaches. CONCLUSION: While educational approaches were helpful, they were less likely to change behaviours, with focused communication tasks also necessary to facilitate PC introduction. An established relationship and trust between patient and clinician were foundational to effective PC discussions. A framework to assist clinicians in this task is likely to be multidimensional in nature, although more quantitative research is necessary to establish the most effective methods and how they may be incorporated into clinical practice.

What are the cost and resource implications of voluntary assisted dying and euthanasia?

Objectives Voluntary assisted dying (VAD) legislation has now been passed in all Australian states. Although VAD has been operating in many settings worldwide for a considerable time, the specific costs associated with VAD seem unclear. The aim of this study was therefore to outline the common resource implications associated with VAD. Methods A rapid literature review and grey literature search were undertaken. Results We found a paucity of empirically informed detail regarding the actual costs required to implement VAD. Hence, we tabulated a list of potential costs that could be used for subsequent evaluation and a future research agenda. Conclusions There is a lack of publicly available information related to the costs associated with implementing VAD. Given that this is a significant change in policy and many multidisciplinary practitioners may be directly or indirectly involved in VAD it is important that associated costs are clearly outlined so that appropriate resources can be allocated.