Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care crosssectional survey

© The Author(s) 2018 CC-BY-NCBackground: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. Aim: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists’ perceptions of opportunities and challenges when delivering and developing palliative care services. Design: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). Results: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Conclusion: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care

Living actively in the face of impending death: constantly adjusting to bodily decline at the end-of-life

Author version made available in accordance with Publisher copyright policy.Context People with advanced cancer experience bodily change resulting in debilitating functional decline. Although inability to participate in everyday activities (occupation) contributes to profound suffering, limited research has examined the relationship between altered bodily experience (embodiment) and functional ability. Objectives The purpose of this study was to better understand the lived experience of functional decline for people with advanced cancer living at home. Methods Indepth interviews were conducted with 10 community dwelling people with advanced cancer about their bodily experiences of functional decline. This study employed a pragmatic qualitative approach, informed by hermeneutic phenomenology. Results People described living with rapidly disintegrating bodies and how this affected their ability to participate in everyday activities. Analysis identified themes which were evaluated against conceptual frameworks of ‘occupation’ and ‘embodiment’. People experienced a shifting sense of self. They had to continuously reinterpret changing bodies. Previously automatic movements became disjointed and effortful. Simple actions like standing or getting out of bed required increasing concentration. Relentless bodily breakdown disrupted peoples’ relationship with time, hindering their ability, but not their desire, to participate in everyday activities. Contending with this deterioration is the work of adaptation to functional decline at the end-of-life. Conclusions This study highlights the role active participation in everyday activities plays in mediating adjustment to functional decline. These findings challenge us to look beyond palliation of physical symptoms and psychospiritual care as ends in themselves. Symptom control and palliation should be viewed as mechanisms to optimise active participation in essential and valued activities

End-of-Life Online Health Education Uptake and Usage by Australian Health Professionals: Urban, Rural and Remote Settings

This work is copyrighted. It may be reproduced in whole or in part for research or training purposes, subject to the inclusion of an acknowledgement of the source. It may not be reproduced for commercial use or sale. Reproduction for purposes other than those indicated above requires written permission from the Flinders University Research Centre for Palliative Care, Death & Dying. Contact [email protected] for permissions.Access to skilled end-of-life care is particularly important for those who live in rural and remote areas in Australia given the high levels of chronic disease and higher mortality rates. However, health professionals in rural and remote areas do not always receive adequate training to provide this care due to lack of accessible education. End-of-Life Essentials (EOLE) is a government funded education project which aims to provide free peer-reviewed online education modules and implementation resources on end-of-life care to health professionals in acute hospitals in Australia. In order to understand the uptake and usage of the EOLE education modules, learners’ geographical locations and module completion data from the first year of the program were analysed according to remoteness category. This White Paper outlines and explores the results of the retrospective data analysis conducted in June 2018. Data from learners who registered in the first year of the EOLE program was were extracted, and 4224 learners were included for data analysis. Study findings show that there is a good reach of EOLE to health professionals living in remote and very remote areas. As learners from very remote areas showed the highest proportion of module completion, it suggests the potential benefit of this important online education in providing accessible continuing end-of-life care education for health professionals residing in the most remote parts of Australia

Allied Health Clinicians' Understanding of Palliative Care as It Relates to Patients, Caregivers, and Health Clinicians: A Cross-Sectional Survey

© 2019 Journal of Allied Health and Association of Schools of Allied Health Professionals. This author accepted manuscript is made available following 12 month embargo from date of publication (June 2019) in accordance with the publisher’s archiving policyPURPOSE: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single openended question from a larger survey are presented. METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data. RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings. CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease

Subacute Rehabilitation Does Have Benefits for Patients With Advanced Cancer

© 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. This manuscript version is made available under the CC-BY-NC-ND 4.0 license: http://creativecommons.org/licenses/by-nc-nd/4.0/ This author accepted manuscript is made available following 12 month embargo from date of publication (Oct 2017) in accordance with the publisher’s archiving policyTo the Editor: It is with concern that we read a recent Letter to the Editor by Desai et al.,1 that stated “people with gastrointestinal cancer did not benefit from the admission to subacute rehabilitation,” concluding that inpatient rehabilitation could do more harm than good. People with advanced cancer may not always achieve physical gains after rehabilitation but to state there is no benefit is an oversimplification. This was a very small sample size (n = 22), one-third of whom had metastatic pancreas cancer where rapid functional decline is seen in the last weeks of life. Is this a sufficient sample on which to base the letter's conclusions? Careful individualized screening of people with advanced cancer to determine who may benefit from rehabilitation is essential when planning care. The outcomes used in this study to measure rehabilitation success (survival, further chemotherapy) do not capture rehabilitation gains. Limiting outcomes to these measures ignores functional outcomes of importance to patients and caregivers such as maintaining independence for as long as possible.2,3 Patient-driven palliative rehabilitation goals focus on maintenance of function and participation,4 not whether they can have further chemotherapy. Rehabilitation, which includes caregiver education and training, optimizes patient function, reduces caregiver burden, and facilitates supported discharge home.2,3,5 A growing body of evidence demonstrates that palliative rehabilitation can maintain and optimize functional ability.5–8 Rehabilitation is highly valued by patients with advanced disease4,9–11 and serves to improve patient confidence to actively participate in everyday activities.4,12,13 It enables patients to regain hope through exerting control over valued activities, even in the face of progressive physical deterioration.5,11,12 Psychosocial support during rehabilitation can be invaluable to facilitate adjustment to functional decline and enhance quality of life.10–13 It is dangerous to flag potential harms of rehabilitation without discussing the potential benefits. Inadequate communication about goals of care can be harmful, but discussing the scope including potential and limitations of rehabilitation is considered clinical care. Effective communication is essential in all clinical practices, and potential harms caused by unrealistic hope may be mitigated by clear, truthful communication delivered in a sensitive manner. When prognosis is openly discussed with patients, rehabilitation clinicians working with palliative care patients can agree on realistic goals of care. Of note, rehabilitation physicians have been found to be less likely to consider prognosis as a barrier to rehabilitation than oncologists14 while palliative care physicians' understanding of the potential benefits of rehabilitation varies.15 The specialties of oncology, palliative care, and rehabilitation bring different skill sets and perspectives that all contribute to optimizing patient function over the disease trajectory.16 Functional decline is inevitable for people with advanced cancer, and not all patients will benefit from palliative rehabilitation. However, a narrative that highlights potential harms of rehabilitation without exploring potential benefits is misleading. Importantly, the potential of palliative rehabilitation to optimize function warrants further investigation, irrespective of prognosis

Activities forgone because of chronic breathlessness: a cross-sectional, population prevalence study

BackgroundChronic breathlessness is a prevalent, disabling syndrome affecting many people for years. Identifying the impact of chronic breathlessness on people’s activities in the general population is pivotal for designing symptom management strategies. ObjectiveThis study aimed to evaluate the association between chronic breathlessness and activities respondents identify can no longer be undertaken (‘activities foregone’). DesignThis population-based, cross sectional, online survey used a market research company’s database of 30,000 registrants for each sex, generating the planned sample size - 3,000 adults reflecting Australia’s 2016 Census by sex, age group, state of residence and rurality. Setting/Subjects The population of focus (n=583) reported a modified Medical Research Council (mMRC) breathlessness scale >1 and experienced this breathlessness for >3 months. MeasurementsActivities forgone were categorised by mMRC using coding derived from the Dyspnea Management Questionnaire domains. Activities were classified as ‘higher/lower intensity’ using Human Energy Expenditure scale.ResultsRespondents were: male 50.3%; median age 50.0 (IQR 29.0); with 66% living in metropolitan areas; reporting 1,749 activities forgone. For people with mMRC 1 (n=533), 35% had not given up any activity, decreasing to 9% for mMRC 2 (n=38) and 3% for mMRC 3-4 (n=12). Intense sport (e.g. jogging, bike riding) was the top activity forgone: 42% (mMRC 1); 32% (mMRC 2); and 36% (mMRC 3-4). For respondents with mMRC 3-4, the next most prevalent activities foregone were ‘sexual activities’ (14%); ‘lower intensity sports’ (11%) and ‘other activities’ (11%).ConclusionsPeople progressively reduce a wide range of activities because of their chronic breathlessness

Lower workforce participation is associated with more severe persisting breathlessness

Background: Not being able to work has negative health, social and financial consequences. Persisting breathlessness is prevalent in working-aged people. Is it associated with lower workforce participation? This study, using the South Australian Health Omnibus, aimed to explore associations between paid workforce participation and persisting breathlessness intensity, and economic impacts on income in people of working age. Methods: This cross-sectional study conducted face-to-face interviews with a random sample of adults in South Australia (n = 8916). Questions included key demographic data, workforce participation and the presence and intensity of persisting breathlessness. Data from working-aged respondents (20–65years of age) were standardised to the census for regression analyses. Work was coded to paid full- or part-time work or ‘other’. Persisting breathlessness (more than three of the last six months) used the modified Medical Research Council breathlessness scale (aggregated to 0, 1, 2–4). Opportunity cost valuations compared annual income foregone by persisting breathlessness severity. Results: Of people interviewed, 6,608 were working-aged (49.9% male; 67.5% had post-secondary qualifications; 70.9% were in paid full- or part-time work; and 1.7% had mMRC score 2–4). Workforce participation dropped in working aged people with increasing breathlessness: mMRC 0, 70.6%; mMRC 1, 51.7%; mMRC 2–4, 20.3%. In the regression model, people with the most severe breathlessness were much less likely to work (OR 0.14; 95% CI 0.09, 0.22). Annual income foregone by people with persisting breathlessness was AU$10.7 billion (AU$9.1b for full-time and AU$1.6b for part-time work; range AU$5.9b, AU$49.7b). Conclusion: Worsening persisting breathlessness is associated with lower workforce participation with direct financial consequences, greatest for older males

The trajectory of functional decline over the last 4 months of life in a palliative care population: A prospective, consecutive cohort study

This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for selfarchiving. © The Author(s) 2019Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families

Phase II, double blind, placebo controlled, multi-site study to evaluate the safety, feasibility and desirability of conducting a phase III study of anamorelin for anorexia in people with small cell lung cancer: a study protocol (LUANA trial)

AbstractAnorexia is experienced by most people with lung cancer during the course of their disease and treatment. Anorexia reduces response to chemotherapy and the ability of patients to cope with, and complete their treatment leading to greater morbidity, poorer prognosis and outcomes. Despite the significant importance of cancer-related anorexia, current therapies are limited, have marginal benefits and unwarranted side effects. In this multi-site, randomised, double blind, placebo controlled, phase II trial, participants will be randomly assigned (1:1) to receive once-daily oral dosing of 100mg of anamorelin HCl or matched placebo for 12 weeks. Participants can then opt into an extension phase to receive blinded intervention for another 12 weeks (weeks 13-24) at the same dose and frequency. Adults (≥18 years) with small cell lung cancer (SCLC); newly diagnosed with planned systemic therapy OR with first recurrence of disease following a documented disease-free interval ≥6 months, AND with anorexia (i.e., ≤ 37 points on the 12-item Functional Assessment of Anorexia Cachexia Treatment (FAACT A/CS) scale) will be invited to participate. Primary outcomes are safety, desirability and feasibility outcomes related to participant recruitment, adherence to interventions, and completion of study tools to inform the design of a robust Phase III effectiveness trial. Secondary outcomes are the effects of study interventions on body weight and composition, functional status, nutritional intake, biochemistry, fatigue, harms, survival and quality of life. Primary and secondary efficacy analysis will be conducted at 12 weeks. Additional exploratory efficacy and safety analyses will also be conducted at 24 weeks to collect data over longer treatment duration. The feasibility of economic evaluations in Phase III trial will be assessed, including the indicative costs and benefits of anamorelin for SCLC to the healthcare system and society, the choice of methods for data collection and the future evaluation design. The trial has been registered with the Australian New Zealand Clinical Trials Registry [ACTRN12622000129785] and approved by the South Western Sydney Local Health District Human Research Ethics Committee [2021/ETH11339]