End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals

Author version made available in accordance with the publisher's policy.Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors.There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality

Deathbed phenomena reported by patients in palliative care: clinical opportunities and responses

Copyright 2015 Mark Allen Healthcare. editorially accepted manuscript version of the paper reproduced here with permission from the publisher.Over many decades and across many cultures and disciplines, the scientific literature reports unusual and hard to explain phenomena at the end of life. In the palliative care literature these reports are often anecdotal (Nelson, 2000), poorly understood or even treated just as hallucination (Morse 1994). In practice though, many health professionals have heard accounts from ill and dying patients of difficult to explain events (Pflaum and Kelley 1986, Wimbush and Hardie 2001, Mazzarino-Willett 2010) and while health professionals need also to recognise hallucinations arising from delirium, dementia or other neurologic or psychiatric disorders, underlying causality for these experiences may not be obvious or attributable. We have adopted the term Death Bed Phenomena (DBP) described here by Brayne and colleagues (2006, Page 17): “death may be heralded by deathbed phenomena such as visions that comfort the dying and prepare them spiritually for death” although these unexplainable accounts range from seeing dead relatives, hearing or feeling “other worlds” (Fenwick and Brayne, 2012), a significant dream, or patients being aware of the time of their own death. Patients and carers can be reluctant to discuss or divulge these phenomena for fear of being labelled ‘mad’ (Barbato et al, 1999) and health professionals (professionally trained and primarily educated in biomedical, scientific or rational models and ways of thinking) can find this a perplexing issue leaving them unsure how to respond to their patients’ stories and accounts (Brayne et al, 2006). In a quest to understand the clinical potential around these phenomena, we undertook this systematic review of the literature, with a specific focus on the palliative care population for whom death is an expected and foreseeable event due to progressive illness. While postulations on possible causes of these extraordinary end of life phenomena can be fascinating to read (Blanke, 2004), such phenomena are real for those who experience them. “Assumptions about their origins and credibility can alienate” patients and their families “at a critical time in their mourning or dying” (Barbato et al, 1999). Like others (Brayne et al 2006, Fenwick and Brayne 2011), Barbato and colleagues (1999) raise the potential within our professional role to normalise the experience and encourage the patient to find solace and emotional and spiritual wellbeing. In an effort to understand more fully these phenomena and their impact, health professionals, sociologists, psychologists and others have explored patient accounts of difficult to explain events and occurrences. Studies describing deathbed phenomena (DBP) (Barrett 1926, Sartori 2010) and near death experiences (NDE) (Morse 1994, Alvarado 2006, Bell et al 2010) emphasise the supportive spiritual potential of DBP (Ethier 2005, Fenwick and Brayne 2011), suggest additional therapies to further interpret DBP (Iordache and MacLeod, 2011), and put forward specific approaches for children and adolescents who experience NDE (Bell et al, 2010). DBP has been distinguished from NDE with the latter usually describing an unusual event or experience preceding an unexpected or accidental near death, or reported after successful cardiopulmonary resuscitation. While the nomenclature and definitions of DBP are developing in the literature, a comprehensive review about these occurrences reported by patients in a palliative care context is not available. DBP may be of especial significance in this population where cure is not possible and death at some point is a foreseeable event

‘My Learning’: Results of pre-test, post-test evaluation Evaluation Program: Report No. 21 A white paper published by the Flinders Research Centre for Palliative Care, Death and Dying

Copyright Flinders UniversityFor professionals who are seeking to implement Evidence Based Practice (EBP), understanding how to use evidence in clinical practice can be difficult. While research evidence can be important in highlighting the efficacy of various treatments and therapies, translating available evidence into practice can be challenging for clinicians and act as an obstacle to the provision of high-quality care

Supporting service change in palliative care: a framework approach

Copyright 2014 Mark Allen Healthcare. editorially accepted manuscript version of the paper reproduced here with permission from the publisher.Background Palliative care services are increasingly identifying areas for improvement, then trying to create appropriate changes in response. Nurses in particular are often expected to take leading roles in Quality Improvement (QI) but are not necessarily trained or supported in these processes. Methods. A framework approach to change was developed to guide services through a change cycle, and delivered via workshops by representatives of three national projects in Australia. Participants were predominantly nurses (80%) with the majority over the age of 50 (62.4%). The workshops and the framework were positively evaluated with participants feeling confident in a number of QI related activities following workshop training. Discussion. Recognising and addressing problems in clinical practice and service delivery is an important way for nurses to ensure quality care for patients, however, they need support in developing the skills and knowledge that are essential to successful QI 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

Lessons learned from the Dying2Learn MOOC : pedagogy, platforms and partnerships

(1) Background: Massive Open Online Courses (MOOCs) are becoming more commonplace in the delivery of free online education and a Dying2Learn MOOC was offered by a team at Palliative and Supportive Services, Flinders University, South Australia; (2) Methods: Working with the OpenLearning platform developer, a research study and MOOC evaluation were embedded in the course, and content was delivered in innovative ways without compromising pedagogical approaches; (3) Results: This MOOC provided the facilitators with the opportunity to view education as an intervention, with testing undertaken, including measuring attitudinal change. Research, clinical and community partnerships were developed or reaffirmed and the value of ongoing partnerships with developers in creating platforms and tools that can expand the options for online learning is highlighted. Opportunities for future health professional and consumer education were also explored; (4) Conclusion: MOOCs can provide innovative opportunities to redesign educational approaches, which can be achieved by working with new technologies and with platform developers, while still adhering to pedagogical principles

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

Correlates of perceived death competence: What role does meaning-in-life and quality-of-life play?

This version is free to view and download for private research and study only. Not for re-distribution or re-use. Copyright © Cambridge University Press 2019.Objective Understanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life. Method During the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background. Result Findings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death. Significance of results The findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals and volunteers may help predict or prevent burnout and compassion fatigue, and help identify who would benefit from additional training and support. Future longitudinal studies including both health professionals and the general community are needed to determine the effect adaptive attitudes toward meaning in life can potentially have on bolstering subsequent adaptive coping and competence regarding death and dying