The underrepresentation of palliative care in global guidelines for responding to infectious disease outbreaks: a systematic narrative review.

BACKGROUND: The importance of palliative care provision has been highlighted in previous humanitarian emergencies. This review aimed to examine the breadth and depth of palliative care inclusion within global guidelines for responding to infectious disease outbreaks. METHODS: The review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Electronic searches of MEDLINE, Embase, Cumulative Index to Nursing and Allied Health, PsychInfo and grey literature were performed. Inclusion criteria were guidelines (recommendations for clinical practice or public health policy) for responding to infectious disease outbreaks in the general adult population. Results were limited to the English language, between 1 January 2010 and 17 August 2020. Analysis of the included articles involved assessing the breadth (number of palliative care domains covered) and depth (detail with which the domains were addressed) of palliative care inclusion. RESULTS: A total of 584 articles were retrieved and 43 met the inclusion criteria. Two additional articles were identified through handsearching. There was limited inclusion of palliative care in the guidelines examined. CONCLUSIONS: There is an opportunity for the development of guidelines that include information on palliative care implementation in the context of infectious disease outbreaks in order to reduce the suffering of key vulnerable populations worldwide.

Development of an Australia and New Zealand Lung Cancer Clinical Quality Registry: a protocol paper.

INTRODUCTION: Lung cancer is the leading cause of cancer mortality, comprising the largest national cancer disease burden in Australia and New Zealand. Regional reports identify substantial evidence-practice gaps, unwarranted variation from best practice, and variation in processes and outcomes of care between treating centres. The Australia and New Zealand Lung Cancer Registry (ANZLCR) will be developed as a Clinical Quality Registry to monitor the safety, quality and effectiveness of lung cancer care in Australia and New Zealand. METHODS AND ANALYSIS: Patient participants will include all adults >18 years of age with a new diagnosis of non-small-cell lung cancer (NSCLC), SCLC, thymoma or mesothelioma. The ANZLCR will register confirmed diagnoses using opt-out consent. Data will address key patient, disease, management processes and outcomes reported as clinical quality indicators. Electronic data collection facilitated by local data collectors and local, state and federal data linkage will enhance completeness and accuracy. Data will be stored and maintained in a secure web-based data platform overseen by registry management. Central governance with binational representation from consumers, patients and carers, governance, administration, health department, health policy bodies, university research and healthcare workers will provide project oversight. ETHICS AND DISSEMINATION: The ANZLCR has received national ethics approval under the National Mutual Acceptance scheme. Data will be routinely reported to participating sites describing performance against measures of agreed best practice and nationally to stakeholders including federal, state and territory departments of health. Local, regional and (bi)national benchmarks, augmented with online dashboard indicator reporting will enable local targeting of quality improvement efforts.

Singing for People with Advance Chronic Respiratory Diseases: A Qualitative Meta-Synthesis.

RATIONALE: Although there remains insufficient evidence regarding singing programs as effective strategies for achieving clinically significant health outcomes, this non-pharmacological intervention appears to be subjectively low-risk and well-tolerated by people with advanced chronic respiratory diseases (CRD). OBJECTIVE: This study sought to examine and synthesize the current qualitative evidence regarding the experiences of participating in singing for breathing programs by people with advanced CRD. METHODS: A meta-synthesis of qualitative data was conducted. Electronic databases (Medline, CINAHL, PsycINFO, and EMBASE) were searched for published qualitative studies reporting the effects of singing programs for adults with advanced CRD and their carers. Primary qualitative data were extracted and analysed, which generated descriptive and analytical themes. RESULTS: Themes identified from seven included studies were: anticipation and reluctance to participate; physical and psychological benefits; new sense of purpose and enjoyment; social connection and achievement; and broad views regarding program structure and content. The themes highlighted changing perspectives before, during and after engaging in the singing program, as participants transitioned from initial anxiety to mastery of their chronic condition as the singing program progressed. Participants, however, raised concerns regarding several singing technicalities, the lack of ongoing support after the singing programs' conclusion and the social impacts of transitioning the sessions online during the COVID-19 pandemic. CONCLUSIONS: This meta-synthesis highlights the positive experiences of people with CRD who participate in singing for breathing programs. Further research, including longitudinal qualitative studies, can provide insight into the acceptability and feasibility of singing programs and inform the broader implementation of the intervention.

SINFONIA study protocol: a phase II/III randomised controlled trial examining benefits of guided online group singing in people with chronic obstructive pulmonary disease and interstitial lung disease and their carers.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) and interstital lung disease (ILD) are incurable conditions characterised by airflow limitation, persisting respiratory symptoms, and progressive respiratory failure. People living with COPD or ILD often suffer from chronic and severe breathlessness, with limited treatment options and low engagement rates with current therapies. Group singing represents a potential community-based therapy to improve quality of life for patients with COPD or ILD and breathlessness. METHODS: This protocol papers describes SINFONIA, a parallel, double-arm, randomised, blinded-analysis, mixed-methods phase II/III trial of guided, online group singing that will be conducted over 24 months. Adults with confirmed COPD or ILD, on stable treatment for at least four weeks at time of recruitment, with a modified Medical Research Council (mMRC) dyspnoea score of two or greater, who are capable and willing to give consent, and not currently participating in pulmonary rehabilitation will be eligible to participate. Carers may optionally enrol in the trial. Data will be collected on quality of life, anxiety and depression, breathlessness, mastery of breathing, exercise tolerance, loneliness, healthcare utilisation, and carer quality of life (optional). Participants will be randomised 1:1 to intervention or control arms with intervention arm attending one 90 min, guided, online, group singing session per week for 12 weeks and control arm continuing routine care. Phase II of the trial aims to determine the feasibility and acceptability of guided, online group singing and will collect preliminary data on effectiveness. Phase III aims to determine whether guided, online group singing has an effect on quality of life with the primary outcome being a between arm difference in quality of life (36-item Short Form Survey) measured at 12 weeks. DISCUSSION: SINFONIA is the first study is the first of its kind in Australia and to our knowledge, the first to deliver the singing intervention program entirely online. Determining the feasibility, acceptability, and effectiveness of guided, online group singing is an important step towards improving low-cost, low-risk, community-based therapeutic options for patients living with COPD or ILD and breathlessness. TRIAL REGISTRATION: Phase II- ACTRN12621001274864 , registered 20th September 2021; Phase III- ACTRN12621001280897 , registered 22nd September 2021.

Telehealth in outpatient delivery of palliative care: A qualitative study of patient and physician views.

OBJECTIVES: The COVID-19 pandemic has widened the funded use of telehealth in Australia to support telehealth delivery to all patients in any setting. Increasing the use and experience of telehealth brings to light unique insights into the advantages and challenges of this new model of healthcare delivery This study aimed to qualitatively explore the experiences of both palliative care physicians and patients setting, including their views on its future role in healthcare. METHODS: This qualitative study was conducted across three metropolitan tertiary palliative care centers in Victoria, Australia between November 2020 and March 2021. Purposive sampling identified 23 participants (12 physicians and 11 patients). Semi-structured interviews focused on the last telehealth consultation, thoughts and impressions of telehealth, and the possibility of telehealth remaining in palliative care. A thematic approach was adopted to code and analyze the data. RESULTS: Telehealth transformed the ways physicians and patients in this study perceived and engaged with outpatient palliative care across the entire continuum of care. Four key themes were identified: (1) access to care; (2) delivery of care; (3) engagement with care; and (4) the future. SIGNIFICANCE OF RESULTS: This study provides novel data bringing together the perspective of patients and physicians, which confirms the utility of telehealth in palliative care. Its convenience enables more frequent review, enables reviews to occur in response to lower levels of concern, and adds toward enhancing the continuity of care across and between settings. Moving forward, support seemed strongest for a hybrid model of telehealth and face-to-face consultations guided by key parameters relating to the level of anticipated complexity.

A Multi-Centre COVID-19 Study Examining Symptoms and Medication Use in the Final Week of Life.

CONTEXT: Guidelines exist to direct end-of-life symptom management in COVID-19 patients. However, the real-world symptom patterns, and degree of concordance with guidelines on medication use, and palliative care involvement has received limited attention. OBJECTIVES: To describe the evolution of COVID-19 symptoms, medication used to alleviate these, and degree of palliative care involvement in the final week of life. METHODS: This retrospective study reviewed all COVID-19 inpatient deaths across five metropolitan hospitals in Australia from January 1 to December 31, 2020. Outcome measures were collected at day of death, and days one, two, five and seven before death. These were COVID-19 symptom severity (measured by the Palliative Care Outcome Scale), and use of supportive pharmacological and non-pharmacological therapies. Palliative care referral timepoint was also collected. RESULTS: Within the sample of 230 patients, commonest symptoms were breathlessness, agitation, pain, and respiratory secretions. On day of death, 79% (n = 181) experienced at least one symptom, and 30% (n = 68) experienced severe/extreme symptoms. The use of midazolam, glycopyrrolate, and infusions for symptom management occurred late, less frequently, and at lower doses than suggested in guidelines and other studies. Palliative care referrals were made late, at median three days before death (IQR 1-6 days), and for only half of people dying from COVID-19 (51%; n = 118). CONCLUSION: Symptoms peaked in final three days of life. Earlier use of in fusional and breakthrough medications should be considered in anticipation of symptoms given high likelihood of dying in discomfort. Earlier palliative care referral for high-risk patients should be considered at hospital admission.

A multi-centre study on patients dying from COVID-19: communication between clinicians, patients and their families.

BACKGROUND: COVID-19 has led to challenges in providing effective and timely communication in healthcare. Services have been required to adapt and evolve as successful communication remains core to high-quality patient-centred care. AIM: To describe the communication between admitted patients, their families and clinicians (medical, nursing, allied health) during end-of-life care. METHODS: This retrospective review included all patients (n = 230) who died directly due to COVID-19 at five Melbourne hospitals between 1 January and 31 December 2020. Contacts and modality used (face to face, video, telephone) during the 8 days prior to death were recorded. RESULTS: Patients were predominantly elderly (median age 86 years) and from residential aged care facilities (62%; n = 141). Communication frequency increased the closer the patient was to death, where on day of death, contact between clinicians and patients was 93% (n = 213) clinicians and families 97% (n = 222) and between patients and families 50% (n = 115). Most contact between patients and families was facilitated by a clinician (91.3% (n = 105) day of death) with the most commonly used mode being video call (n = 30 day of death). CONCLUSION: This study is one of the first and largest Australian reports on how communication occurs at the end of life for patients dying of COVID-19. Contact rates were relatively low between patients and families, compared with other cohorts dying from non-COVID-19 related causes. The impact of this difference on bereavement outcomes requires surveillance and attention.

Perceptions of telehealth in real-world oncological care: An exploration of matched patient- and clinician-reported acceptability data from an Australian cancer centre.

BACKGROUND: Prior to 2020, the use of telehealth in cancer care was limited, but COVID-19 necessitated its rapid and widespread adoption into routine care delivery. This study aimed to evaluate perceptions of telehealth through a dyadic exploration of matched cancer patient- and clinician-reported acceptability data and to explore factors that may predict greater suitability for telehealth. METHODS: A prospective, cross-sectional, exploratory survey study assessed (matched) patient- and clinician-reported perceptions of telehealth consultations occurring at a metropolitan, tertiary-based cancer centre in Victoria, Australia. RESULTS: One-hundred and fifty-five matched patient- and clinician-reported data were included. High rates of acceptability with telehealth were reported by patients (93%) and clinicians (91%), who mostly shared concordant views (86%). Factors significantly associated with increased acceptability for telehealth, included, for clinicians, greater familiarity with the patient (OR 8.20, 95% CI: 1.50-45.06, p = 0.02), and younger patient age (OR 1.06, 95% CI: 0.99-1.13, p = 0.05), and for patients was earlier stage disease (≤stage III) (OR 5.29, 95% CI: 1.08-25.82, p = 0.04). Lower acceptability for telehealth according to clinicians was associated with poorer patient performance status (OR 0.04, 95% CI 1.00-1.08, p = 0.04) and for patients with the need for an interpreter (0R 0.06, 95% CI: 0.008-0.51, p = 0.009). CONCLUSION: While overall telehealth is acceptable in cancer care, our findings raise important implications for future service development, notably that it may be less optimal for patients with higher complexity of need-including those with more advanced disease, poorer performance status, those less well known to treating clinicians and those identified to have additional language barriers.

Telehealth in outpatient delivery of palliative care: a prospective survey evaluation by patients and clinicians.

BACKGROUND: In Australia during the COVID-19 pandemic new funding models were introduced to support telehealth consultations, resulting in their widescale adoption in palliative care service delivery. Clarity around the clinical circumstances and patient populations that might be most appropriate for telehealth models was required. AIMS: To evaluate patient and physician satisfaction, acceptability and utility of outpatient palliative care provision through telehealth. METHODS: This is a multi-site prospective, cross-sectional, observational study conducted during a time of significant public health restrictions. A survey was used to collect matched patient- and physician-reported perceptions of palliative care telehealth consultations across three metropolitan hospitals in Victoria, Australia. RESULTS: There were 127 matched patient-physician data of telehealth consultations and a further 812 physician-only assessments. Telehealth was generally acceptable and satisfactory, with patients providing greater positive scores than clinicians. Telehealth incorporating both audio and video were more acceptable and satisfactory, particularly with the presence of a carer, and during routine reviews. Physicians were less satisfied using telehealth when there was increasing symptom complexity across all domains (pain, psychological, and other symptoms). CONCLUSIONS: Telehealth has high utility in palliative care practice. A future hybrid model of care comprising both face-to-face and telehealth consultations seems favoured by patients and physicians but must be accompanied by targeted support for specific patient groups to ensure equitable healthcare access. Further evaluation of telehealth during a time of fewer public health emergency measures and lower community anxiety is required to fully understand its ongoing role.

The role of telehealth in oncology care: A qualitative exploration of patient and clinician perspectives.

OBJECTIVE: The COVID-19 pandemic has accelerated the rapid expansion of telehealth, affording opportunities to study its impact on oncology care. Our qualitative study explored physician and patient perspectives of telehealth in cancer care. METHODS: Semistructured interviews were conducted with seven physicians and eleven patients, recruited from an Australian hospital oncology department. Two authors independently coded the transcripts with emerging themes identified and refined iteratively in a thematic analysis. RESULTS: Telehealth offered broadened possibilities by allowing continuity of care in the pandemic and revealing advantages of convenience in consultations. It also highlighted core elements of in-person care that were unavailable. These included the information communicated through formal and informal physical examination, the collaboration between patient and physician in shaping outcomes and building rapport and the confidence in decisions made and physician performance. While patients and physicians envisioned the continuation of telehealth postpandemic, logistical steps are necessary to address these challenges. CONCLUSION: This study highlights the unprecedented opportunities that telehealth presents in widening access to oncology care and simultaneously reveals that it cannot always reach equivalence in quality of care. Further research is required to identify when and for whom telehealth is most acceptable as future care models are considered.

Palliative Care Clinical Trials: Building Capability and Capacity.

Clinical trials are a key component of expanding the evidence base in palliative care. A key strategic objective of the Victorian Comprehensive Cancer Centre (VCCC), a multisite cancer center alliance, was to increase palliative care clinical trial expertise. The palliative care services within the VCCC alliance presented substantial trial development opportunities with large number of patients and established relationships, but few trial-active centers. Objectives: To establish a multi-site "Building Capability in Palliative Care Clinical Trials" program as a service development, and to assess the strategies, activities, and the outcomes resulting from this program. Methods: A series of strategies and activities were developed linked to the key program objectives of increasing the number of clinical sites and skilled clinicians conducting clinical trials, increasing the number of trials available and patients participating, broadening research opportunities in palliative care, and establishing the program sustainability. Results: In the two years of implementation, the program resulted in the establishment and conduct of several Phase 4 postmarketing pharmacovigilance studies, nine Phase 2 and 3 trials across five palliative care services, and a Phase 1 clinical trial. During the program, 150 patients were recruited to clinical trials, and 258 prospective pharmacovigilance monitoring cases were recorded. Five investigator-initiated trials were developed by clinical trial fellows and achieved competitive (n = 3) or commercial (n = 2) funding. Clinicians reported that undertaking clinical trials had increased attention to the evidence base of care provision, and increased service research activity more broadly. Long-term sustainability remains a challenge, particularly in the context of the COVID-19 pandemic. Conclusions: Clinical trials in palliative care services are feasible, acceptable, and result in increased attention to the evidence base of care. The strategies detailing the framework, activities, and outcomes have been collated to facilitate implementation of clinical trials in other sites and with other trial-naive disciplinary groups.

COVID-19 end-of-life care: symptoms and supportive therapy use in an Australian hospital.

BACKGROUND: Descriptions of symptoms and medication use at end of life in COVID-19 are limited to small cross-sectional studies, with no Australian longitudinal data. AIMS: To describe end-of-life symptoms and care needs of people dying of COVID-19. METHODS: This retrospective cohort study included consecutive admitted patients who died at a Victorian tertiary referral hospital from 1 January to 30 September directly due to COVID-19. Clinical characteristics, symptoms and use of supportive therapies, including medications and non-pharmacological interventions in the last 3 days of life were extracted. RESULTS: The cohort comprised 58 patients (median age 87 years, interquartile range (IQR) 81-90) predominantly admitted from home (n = 30), who died after a median of 11 days (IQR 6-28) in the acute medical (n = 31) or aged care (n = 27) wards of the hospital. The median Charlson Comorbidity Score was 7 (IQR 5-8). Breathlessness (n = 42), agitation (n = 36) and pain (n = 33) were the most frequent clinician-reported symptoms in the final 3 days of life, with most requiring opioids (n = 52), midazolam (n = 40), with dose escalation commonly being required. While oxygen therapy was commonly used (n = 47), few (n = 13) required an anti-secretory agent. CONCLUSIONS: This study presents one of the first and largest Australian report of the end of life and symptom experience of people dying of COVID-19. This information should help clinicians to anticipate palliative care needs of these patients, for example, recognising that higher starting doses of opioids and sedatives may help reduce prevalence and severity of breathlessness and agitation near death.

Systems of Care in Crisis: The Changing Nature of Palliative Care During COVID-19.

Among the far-reaching impacts of COVID-19 is its impact on care systems, the social and other systems that we rely on to maintain and provide care for those with "illness." This paper will examine these impacts through a description of the influence on palliative care systems that have arisen within this pandemic. It will explore the impact on the meaning of care, how care is performed and identified, and the responses of palliative care systems to these challenges. It will also highlight the current and potential future implications of these dynamics within the unfolding crisis of this pandemic.