European Respiratory Society Clinical Practice Guideline on symptom management for adults with serious respiratory illness.

Respiratory symptoms are ubiquitous and impair health-related quality of life in people with respiratory disease. This European Respiratory Society (ERS) task force aimed to provide recommendations for symptomatic treatment in people with serious respiratory illness.The ERS task force comprised 16 members, including representatives of people with serious respiratory illness and informal caregivers. Seven questions were formulated, six in the "Population, Intervention, Comparison, Outcome" (PICO) format, which were addressed with full systematic reviews and evidence assessed using Grading of Recommendations Assessment, Development and Evaluation (GRADE). One question was addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations.To treat symptoms in people with serious respiratory illness, the task force suggests the use of graded exercise therapy (conditional recommendation, low certainty of evidence); and suggests the use of a multicomponent services, handheld fan and breathing techniques (conditional recommendations, very low certainty of evidence). The task force suggests not to use opioids (conditional recommendation, very low certainty of evidence); and suggests either administering or not administering supplemental oxygen therapy (conditional recommendation, low certainty of evidence). The task force suggests that needs assessment tools may be used as part of a comprehensive needs assessment, but do not replace patient centred care and shared decision making (conditional recommendation, low certainty of evidence). The low certainty of evidence, modest impact of interventions on patient-centred outcomes, and absence of effective strategies to ameliorate cough highlight the need for new approaches to reduce symptoms and enhance wellbeing for individuals who live with serious respiratory illness.

A novel therapy for intractable chronic cough.

Two cases of intractable chronic cough improved significantly with humidified high flow therapy (HHFT). A 59-year-old woman with Primary Sjogren's disease and interstitial lung disease, was trialled on a Fisher and Paykel myAIRVO™ system. She reported sustained benefits of uninterrupted sleep and increased socialization with tapering use of HHFT. A 67-year-old woman with idiopathic pulmonary fibrosis also benefited from the use of myAIRVO™. She had relentless cough with minimal movement, and nocturnal cough causing fragmented sleep. Her cough subsided considerably with continuous HHFT, but recurred without. Both patients reported significant reductions in the cough visual analogue scale. The mechanisms by which HHFT improve intractable cough may include reducing airway dryness, inhibition of neutrophil inflammation and mucus obstruction, and splinting of the airways. HHFT significantly improved cough and health-related quality of life in two patients with interstitial lung disease. Further research is warranted to explore the role of domiciliary HHFT.

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.

Heart failure and the cost of dying: must the ferryman always be paid?

BACKGROUND: Provision of palliative care in chronic heart failure (CHF) can support complex decision-making, significantly improve quality of life and may lower healthcare costs. AIMS: To examine whether healthcare costs differed in terminal admissions according to the adoption of a palliative approach. DESIGN: Retrospective review of medical records and costing data for all admissions resulting in death from CHF (July 2011 to December 2019), analysed as two groups (2011-2016 and 2016-2019) because of background changes in costings. SETTING: Admissions with CHF resulting in death in an Australian tertiary referral centre. RESULTS: The cohort (n = 439) were elderly (median age 83.7 years, interquartile range (IQR) = 77.6-88.7 years) and mostly men (54.9%). Half (230, 52.4%) were referred to a specialist palliative care team, whereas over a third (172, 39.2%) received a palliative approach. Receiving a palliative approach was associated with a nonstatistically significant lower admission cost (AU$12 710 vs AU$15 978; P = 0.19) between 2011 and 2016 (n = 101, 38.8%) and a significantly lower cost (AU$11 319 vs AU$15 978; P < 0.01) between 2016 and 2019 (n = 71, 39.7%). Intensive care admission resulted in the single greatest additional cost at AU$14 624 (IQR = AU$4130-AU$44 197) (n = 48, 2011-2016). Median terminal admission cost was lower for patients with comfort goals of care (P < 0.01), without life-sustaining interventions (P < 0.01) or who received a palliative approach (P < 0.01). Referral to inpatient specialist palliative care or receiving a palliative approach resulted in comparable admission costings (AU$11 621 [IQR = AU$4705-AU$32 457] and AU$11 466 [IQR = AU$4973-AU$25 614]). CONCLUSION: A palliative approach in terminal CHF admission may improve quality at the end of life and decrease costs associated with care.

Impact of socioeconomic status on presentation, care quality and outcomes of patients attended by emergency medical services for dyspnoea: a population-based cohort study.

BACKGROUND: Low socioeconomic status (SES) has been linked to poor outcomes in many conditions. It is unknown whether these disparities extend to individuals presenting with dyspnoea. We aimed to evaluate the relationship between SES and incidence, care quality and outcomes among patients attended by emergency medical services (EMS) for dyspnoea. METHODS: This population-based cohort study included consecutive patients attended by EMS for dyspnoea between 1 January 2015 and 30 June 2019 in Victoria, Australia. Data were obtained from individually linked ambulance, hospital and mortality datasets. Patients were stratified into SES quintiles using a composite census-derived index. RESULTS: A total of 262 412 patients were included. There was a stepwise increase in the age-adjusted incidence of EMS attendance for dyspnoea with increasing socioeconomic disadvantage (lowest SES quintile 2269 versus highest quintile 889 per 100 000 person years, ptrend<0.001). Patients of lower SES were younger and more comorbid, more likely to be from regional Victoria or of Aboriginal or Torres Strait Islander heritage and had higher rates of respiratory distress. Despite this, lower SES groups were less frequently assigned a high acuity EMS transport or emergency department (ED) triage category and less frequently transported to tertiary centres or hospitals with intensive care unit facilities. In multivariable models, lower SES was independently associated with lower acuity EMS and ED triage, ED length of stay>4 hours and increased 30-day EMS reattendance and mortality. CONCLUSION: Lower SES was associated with a higher incidence of EMS attendances for dyspnoea and disparities in several metrics of care and clinical outcomes.

There but not really involved: The meanings of loneliness for people with chronic illness.

Loneliness is one of the most pressing and rapidly growing contemporary social challenges around the world. Yet we still lack a good understanding of how loneliness is constituted and experienced by those most affected. We conducted semi-structured interviews with 40 people with chronic illness who were experiencing loneliness to explore what loneliness means to them and how it impacts in their daily lives. Drawing on ideas around liquidity and performativity, we identified the relational, temporal and social layers of loneliness. Our analysis revealed the interconnectedness of chronic illness and loneliness in participants' daily lives, as well as how chronic illness shifts temporal orientation, and transforms interpersonal relationships and relationship with self, contributing to the experiences of loneliness. Though participants described the many social conditions that restricted their opportunities for social participation, giving them a sense of being left behind and spectating the social life of others, a rhetoric of loneliness as a problem and responsibility of the individual was still prominent. A narrative of the need to perform social connection emerged in the absence of meaningful social bonds with others. We argue that normative ideals of wellness and positivity circulating in chronic illness communities and society more broadly are implicated in the experience of loneliness for people with chronic conditions. We conclude by considering how more expansive representations of how to live well with chronic illness may be important in reducing personal and collective loneliness.

Social determinants of advanced chronic respiratory interventions: a scoping review.

INTRODUCTION: Income, education, occupation, social class, sex and race/ethnicity are essential social determinants of health (SDH). Reporting of SDH when testing complex interventions for people with advanced chronic respiratory diseases or how they impact accessibility, engagement and effectiveness within sub-populations is unclear. AIMS AND METHODS: This scoping review examined reporting of SDH in pulmonary rehabilitation (PR), singing for lung health (SLH) and multicomponent palliative care interventions (MPCI). Reporting of SDH was assessed from studies from PubMed and three systematic reviews. RESULTS: Eight SLH, 35 MPCI and 351 PR studies were included. Sex was most reported (PR: n=331, 94.3%; SLH: n=6, 75.0%; MPCI: n=31, 88.6%), while social class was only mentioned in one PR study (n=1, 0.3%). 18 PR studies (5.1%), two SLH studies (25.0%) and three MPCI studies (8.6%) reported no SDH. Included studies were predominantly from high-income countries (304 PR studies from 26 countries, six SLH studies from two countries and all the MPCI studies from 12 countries), published from 2000 to 2022 with reporting in PR progressively increasing. CONCLUSION: Reporting of SDH is limited. Consequently, impacts of these social barriers on engagement in clinical trials or whether the complex interventions are effective universally or within certain sub-populations is unclear.

Service Level Characteristics of Rural Palliative Care for People with Chronic Disease.

CONTEXT: Despite clear benefit from palliative care in end-stage chronic, non-malignant disease, access for rural patients is often limited due to workforce gaps and geographical barriers. OBJECTIVES: This study aimed to understand existing rural service structures regarding the availability and provision of palliative care for people with chronic conditions. METHODS: A cross-sectional online survey was distributed by email to rural health service leaders. Nominal and categorical data were analyzed descriptively, with free-text questions on barriers and facilitators in chronic disease analyzed using qualitative content analysis. RESULTS: Of 42 (61.7%) health services, most were public (88.1%) and operated in acute (19, 45.2%) or community (16, 38.1%) settings. A total of 17 (41.5%) reported an on-site specialist palliative care team, primarily nurses (19, 59.5%). Nearly all services (41, 95.3%) reported off-site specialist palliative care access, including: established external relationships (38, 92.7%); visiting consultancy (26, 63.4%); and telehealth (18, 43.9%). Perceived barriers in chronic disease included: lack of specific referral pathways (18; 62.1%); negative patient expectations (18; 62.1%); and availability of trained staff (17; 58.6%). Structures identified to support palliative care in chronic disease included: increased staff/funding (20, 75.0%); formalized referral pathways (n = 18, 64.3%); professional development (16, 57.1%); and community health promotion (14, 50%). CONCLUSION: Palliative care service structure and capacity varies across rural areas, and relies on a complex, at times ad hoc, network of onsite and external supports. Services for people with chronic, non-malignant disease are sparse and largely unknown, with a call for the development of specific referral pathways to improve patient care.

The Psychological and Wellbeing Impacts of Quarantine on Frontline Workers during COVID-19 and Beyond.

OBJECTIVE: The current study investigated the experiences, wellbeing impacts, and coping strategies of frontline workers who participated in "Hotels for Heroes", an Australian voluntary hotel quarantine program during the COVID-19 pandemic. The program was open to those who were COVID-19 positive or exposed to COVID-19 as part of their profession. METHODS: Frontline workers who had stayed in voluntary quarantine between April 2020 and March 2021 were invited to participate in a voluntary, anonymous, cross-sectional online survey including both quantitative and qualitative responses. Complete responses were collected from 106 participants, which included data on sociodemographic and occupational characteristics, experiences of the Hotels for Heroes program, and validated mental health measures. RESULTS: Mental health problems were prevalent amongst frontline workers (e.g., moderate anxiety symptoms, severe depression symptoms, and greater than usual impact of fatigue). For some, quarantine appeared to be helpful for anxiety and burnout, but quarantine also appeared to impact anxiety, depression, and PTSD negatively, and longer stays in quarantine were associated with significantly higher coronavirus anxiety and fatigue impacts. The most widely received support in quarantine was from designated program staff; however, this was reportedly accessed by less than half of the participants. CONCLUSIONS: The current study points to specific aspects of mental health care that can be applied to participants of similar voluntary quarantine programs in the future. It seems necessary to screen for psychological needs at various stages of quarantine, and to allocate appropriate care and improve its accessibility, as many participants did not utilise the routine support offered. Support should especially target disease-related anxiety, symptoms of depression and trauma, and the impacts of fatigue. Future research is needed to clarify specific phases of need throughout quarantine programs, and the barriers for participants receiving mental health supports in these contexts.

Burn-out in the health workforce during the COVID-19 pandemic: opportunities for workplace and leadership approaches to improve well-being.

BACKGROUND: Burn-out is a long-standing problem among healthcare workers (HCWs) and leads to poorer quality and less safe patient care, lower patient satisfaction, absenteeism and reduced workforce retention. Crises such as the pandemic not only generate new challenges but also intensify existing workplace stresses and chronic workforce shortages. As the COVID-19 pandemic continues, the global health workforce is burnt-out and under immense pressure, with multiple individual, organisational and healthcare system drivers. METHOD: In this article, we examine how key organisational and leadership approaches can facilitate mental health support for HCWs and identify strategies to support HCWs that are critical for supporting workforce well-being during the pandemic. RESULTS: We identified 12 key approaches at the organisational and individual levels for healthcare leadership to support workforce well-being during the COVID-19 crisis. These approaches may inform leadership responses to future crises. CONCLUSION: Governments, healthcare organisations and leaders must invest and deliver long-term measures to value, support and retain the health workforce to preserve high-quality healthcare.

Knowledge and Attitudes of Allied Health Professionals Towards End-Of-Life and Advance Care Planning Discussions With People With COPD: A Cross-Sectional Survey Study.

Chronic obstructive pulmonary disease (COPD) is a progressive, life-limiting condition. End-of-life (EOL) and Advance Care Planning (ACP) discussions are essential, yet access and support remain inadequate. Allied health professionals (AHPs) commonly have ongoing relationships with patients and opportunities to discuss care outside acute crises as is considered best practice. Australian and New Zealand AHPs were invited to complete an anonymous, online, cross-sectional survey that aimed to explore knowledge, attitudes and practices, and associated perceived triggers and barriers to EOL and ACP discussions with patients with COPD. Closed survey responses were summarized descriptively and free-text thematically analysed. One hundred and one AHPs (physiotherapists, social workers and occupational therapists) participated. Many held positive attitudes towards ACP but lacked procedural knowledge. Half (50%) of participants routinely discussed EOL care with patients when perceiving this to be appropriate but only 21% actually discussed ACP with the majority of their patients. Many cited lack of training to engage in sensitive EOL discussions, with barriers including: 1) clinician lack of confidence/fear of distressing patients (75%); 2) perceived patient and family reluctance (51%); 3) organizational challenges (28%); and 4) lack of role clarity (39%). AHPs commonly have ongoing relationships with patients with chronic conditions but lack the confidence and role clarity to utilise this position to engage ongoing EOL and ACP discussions. While AHPs may not traditionally consider EOL and ACP discussions as part of their role, it is crucial that they feel prepared to respond if patients broach the topic.

'We are largely left out': workplace and psychosocial experiences of Australian general practitioners during the initial months of the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic continues to exert a significant toll on the Australian primary healthcare system. Although wellbeing challenges faced by hospital-based healthcare workers are widely discussed, less is known about the experiences of general practitioners (GPs) during the initial phases of the pandemic. This paper reports qualitative survey data from Australian GPs, examining their workplace and psychosocial experiences during the initial months of the pandemic. METHODS: An Australia-wide, cross-sectional, online survey of frontline healthcare workers was conducted in 2020. A qualitative approach using content analysis was utilised to examine responses to four free-text questions from GPs. RESULTS: A total of 299 GPs provided 888 free-text responses. The findings reveal that general practice was overlooked and undervalued within the pandemic response, resulting in negative impacts on GP wellbeing. Four themes were identified: (1) marginalisation of GPs; (2) uncertainty, undersupported and undervalued in the workplace; (3) isolation and disrupted personal lives; and (4) strategies to support GPs during times of crises. Key concerns included poor access to personal protective equipment, occupational burnout and poor wellbeing, insufficient workplace support, and conflicting or confusing medical guidelines. CONCLUSIONS: Primary healthcare constitutes an essential pillar of the Australian healthcare system. This study presents the many factors that impacted on GP wellbeing during the COVID-19 pandemic. Enabling GP voices to be heard and including GPs in decision-making in preparation for future crises will enhance the delivery of primary care, reducing the burden on hospital services, and help sustain a safe and effective health workforce long term.

Improving care for people with bronchiectasis: opportunities and challenges highlighted from service evaluation.

BACKGROUND: Bronchiectasis is a serious, debilitating condition warranting specialist care. AIMS: To determine if care provided in a tertiary hospital general respiratory clinic was guideline concordant and to validate the Bronchiectasis Severity Index (BSI) in the Australian context. METHODS: A single-centre ambispective study was conducted. The first stage involved a retrospective medical record audit between 1 January 2015 and 31 December 2016. All aspects of bronchiectasis management were reviewed. In the second prospective phase the cohort was followed for 4 years to determine survival and the validity of the BSI determined. RESULTS: A total of 145 patients was included, with mean age of 65 years (standard deviation = 16.6). The aetiology of bronchiectasis was explicitly documented for 58 (40%) patients, with potential causes identified in another 37 patients. Post-infectious aetiologies were described in 62 (43%) patients. Most patients had lung function testing (n = 142; 97%) and sputum culture results (n = 120; 83%). Long-term antibiotics were prescribed to 49 (34%) patients. Only patients culturing Pseudomonas spp. were prescribed inhaled antibiotics. Documentation regarding essential management recommendations was low, including airway clearance (46%), pneumococcal vaccination (27%) and written action plans (32%). Severe disease was common, with more than one-third (34-48%) having BSI scores >9. One-fifth (21%) of the cohort died during the 4-year follow-up period. The BSI was significantly associated with mortality risk (odds ratio 7.7; 95% confidence interval = 3.1-19.3; P < 0.001). CONCLUSION: Our cohort had a high proportion of patients with severe disease and significant mortality; some, but not all, aspects of recommended care were delivered.

Opioids and driving: education gaps in advanced cancer.

OBJECTIVES: Opioids may impair the ability to drive safely, particularly when first prescribed or with dose titration. We investigated whether clinicians evaluate driving status and provide opioid-related driving advice when initiating opioids among people with advanced lung cancer. METHODS: A retrospective medical record review of outpatients with advanced non-small cell lung cancer seen at an Australian tertiary referral centre between 1 January 2015 and 31 December 2019 was undertaken to determine frequency of opioid prescription and documentation of driving status and education regarding driving safety while taking opioids. RESULTS: Of 1022 patients screened, 205 were commenced on opioid therapy. Forty-seven (23%) patients had driving status documented. According to medical records, education about driving safety while on opioids was provided to two (1%) patients on opioid initiation. Ten (5%) patients received opioid-related driving education at least once at follow-up appointments. The content of the education was infrequently documented, and when documented, focused on opioid side effects impacting driving. Opioid doses were often escalated at follow-up appointments. CONCLUSIONS: According to documentation in medical records, clinicians infrequently assessed driving status on opioid initiation and rarely provided education regarding opioid-related driving risks. Further research and clearer guidance regarding opioids and driving safety in the cancer population are required.