Experiences of engaging a death doula: qualitative interviews with bereaved family members.

Background: There has been an emerging trend of adopting a death doula, a non-medical advocate and guide for people at the end of life and their families. While there has been growing empirical research regarding the work of death doulas, no studies have been undertaken with the families who have engaged them.

Objectives: To understand the experiences of families who used a death doula in terms of what they did for the patient and family; to understand the benefits and drawbacks of using a death doula; and to use family insight to determine cultural shifts towards death and dying, and what the death doula phenomenon tells us around our attitudes towards death and dying.

Emerging health and social policy considerations for safe and quality end-of-life care in Australia - the evidence, gaps and challenges.

Recognition of the importance of end-of-life care will enable improvements in the quality of care delivered to patients and their families. Australia is experiencing an increasing number of deaths, (many expected), with an aging population who are living longer, often with multimorbidity. This makes end of life care a priority.

Death doula working practices and models of care: the views of death doula training organisations.

Background: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and enact the role in various ways. The main driver of this evolving role is the organisations that train them.

A qualitative study exploring challenges and solutions to negotiating goals of care at the end of life in hospital settings.

Background: Negotiating goals of care (GoC) with patients is an essential skill for all health-care professionals (HCPs) in hospitals. End-of-Life Essentials (EOLE) is a Commonwealth-funded project that delivers free, peer-reviewed, evidence-based, online education and practice change resources. To date, around 26 000 doctors, nurses and allied health professionals have registered to access the education.

Health and disability care providers' experiences and perspectives on end-of-life care needs of individuals with long-standing physical disability: A qualitative interview study.

Background: Little is known about the specific needs and experiences of individuals with long-standing physical disability at end of life.

Aim: To explore health and disability care providers perspectives and experiences in relation to end-of-life care needs of individuals with long-standing physical disability.

Design: Qualitative study using reflexive thematic analysis.

An international survey of Death Doula training organizations: the views of those driving Death Doula training and role enactment.

Context: Death Doulas are working globally to provide non-medical end-of-life care. They have different training experiences and views on the role and whether it should be standardised.

Objective: To seek the views of organisations responsible for training Death Doulas in order to determine what the drivers are behind this emerging role.

Teams and continuity of end-of-life care in hospitals: managing differences of opinion.

Background: Recognised as an essential element in end-of-life care by the Australian Commission on Safety and Quality in Health Care, effective teamwork can enhance the quality and safety of end-of-life care for patients in hospitals. End-of-Life Essentials (EOLE) is a Commonwealth funded project that delivers peer-reviewed, evidence-based, online education and practice change resources for doctors, nurses and allied health professionals working in hospitals. 'Teams and Continuity for the Patient' features in the suite of EOLE modules and includes education around effective teamwork in end-of-life care.

"Holding back my own emotions": Evaluation of an online education module in pediatric end-of-life care.

Providing quality end-of-life care to a child who is dying in hospital can be stressful and challenging, and health professionals often feel ill-prepared and require additional support. End-of-Life Essentials offers online education modules for health professionals working in acute hospitals, including one on end-of-life care in pediatric settings. This study aimed to evaluate this module and explore learners' views on challenges faced when caring for a dying child and their family in a hospital setting.

Impact of the COVID-19 Pandemic on Funerals: Experiences of Participants in the 2020 Dying2Learn Massive Open Online Course.

A Massive-Open-Online-Course (MOOC) on death and dying (Dying2Learn) was offered in 2020, designed to build conversations about death as a natural part of life. In week 1, the content focused on how today's society engages with death through the language we use, humour, public mourning and funerals. This study investigated 2020 MOOC participants' responses to an online activity reflecting on funerals and memorials during the time of COVID-19.

What is a compassionate response in the emergency department? Learner evaluation of an End-of-Life Essentials online education module.

Objective: To evaluate the End-of-Life Essentials education module 'Emergency Department End-of-Life Care' and explore learners' views on what constitutes a compassionate response in the ED.

Methods: The present study used a multi-methods approach. Learners comprised a mix of nurses, doctors and allied health professionals.

Compassionate communities - What does this mean for roles such as a death doula in end-of-life care?

Objectives: To consider death doulas in relation to compassionate communities, role delineation and regulation, and end-of-life care delivery.

Study Design: A narrative describing the emerging role of death doula in the increasingly complex end-of-life space.

Methods: A discussion of death doula in end-of-life care.

"It's given me confidence": a pragmatic qualitative evaluation exploring the perceived benefits of online end-of-life education on clinical care.

Background: Hospital admissions for end-of-life care are increasing exponentially across the world. Significant numbers of health professionals are now required to provide end-of-life care with minimal training. Many health professionals report they lack confidence to provide this care, particularly those in acute hospital settings.

Natural Death Versus Known Date-Of-Death: A Qualitative Study of Views on Voluntary Assisted Dying in an Online Course About Death.

The study aimed to describe views on Voluntary Assisted Dying (VAD), gleaned through qualitative analysis of participant responses to a set activity, run during the 2018 'Dying2Learn' Massive Open Online Course (MOOC). Data from 508 participants, most of whom identified as health professionals, were analysed using thematic content analysis, and themes generated. A large proportion of participants discussed their personal views related to VAD, specifically around choice, control, dignity, palliative care and dying at home, medical intervention, societal factors, the impact on those left behind, laws and regulations, dying 'naturally', advance care directives, and being in pain.

Words describing feelings about death: A comparison of sentiment for self and others and changes over time.

Understanding public attitudes towards death is needed to inform health policies to foster community death awareness and preparedness. Linguistic sentiment analysis of how people describe their feelings about death can add to knowledge gained from traditional self-reports. This study provided the first description of emotive attitudes expressed towards death utilising textual sentiment analysis for the dimensions of valence, arousal and dominance.

Evaluation of an End-of-Life Essentials Online Education Module on Chronic Complex Illness End-of-Life Care.

Chronic complex illness/multimorbidity is a leading cause of death worldwide. Many people with chronic complex illnesses die in hospital, with the overall quality of end-of-life care requiring substantial improvement, necessitating an increase in the knowledge of the health professionals caring for them. End-of-Life-Essentials (EOLE) offers online education modules for health professionals working in acute hospitals, including one on chronic complex illness.

End-of-Life Care in Acute Hospitals: Practice Change Reported by Health Professionals Following Online Education.

Providing quality care for those dying in hospital is challenging for health professionals who receive little training in this. "End of Life Essentials" (EOLE) was developed to address gaps in health professionals' knowledge, skills and confidence in end-of-life care via the provision of online learning modules and practice resources. This study aimed to determine whether respondents could describe clinical practice change as a result of module completion.

End-of-life doulas: A qualitative analysis of interviews with Australian and International death doulas on their role.

Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews.

E-learning: who uses it and what difference does it make?

Background: CaseSearch 'My Learning' e-learning modules were designed to remind clinicians and practitioners about the role of evidence in practice and demonstrate how to find relevant evidence to make a difference in clinical care. This study aims to describe the role of the modules and their uptake, and determine whether the modules influenced the learners' palliative care practice and whether the modules were easy to use.

Method: Two sets of questions were designed to capture data to evaluate the modules.

The Changing Nature of Palliative Care: Implications for Allied Health Professionals' Educational and Training Needs.

CareSearch is an Australian Government Department of Health funded repository of evidence-based palliative care information and resources. The CareSearch Allied Health Hub was developed in 2013 to support all allied health professionals working with palliative care clients in all clinical settings. This cross-sectional online survey sought to elicit allied health professionals palliative care experiences and subsequent considerations for educational and clinical practice needs.

The voices of death doulas about their role in end-of-life care.

'Death Doulas' have emerged as a relatively new role supporting dying people and their family members; however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study aimed to explore the ambiguity of the role of death doulas in end-of-life care including the skills, training and experience of death doulas; how the role is communicated to the community; and the relationships to palliative care providers and other health professionals. People identifying as death doulas were invited to participate in an online survey between April and June 2018.

Improving quality in hospital end-of-life care: honest communication, compassion and empathy.

Background: With over half of expected deaths occurring in acute hospitals, and a workforce not trained to care for them, good quality end-of-life care in these settings is hard to achieve. The has been translated into e-learning modules by the End of Life Essentials project, and this study aims to demonstrate how clinicians interpret the Consensus Statement in their day-to-day practice by answering the question at the end of each module: 'Tomorrow, the one thing I can change to more appropriately provide end-of-life care is…'.

Methods: The modules were developed by a palliative care educator with the support of a peer review group and were piloted with 35 health professionals.

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

Purpose: 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 open-ended question from a larger survey are presented.

"I want to die in my sleep"-how people think about death, choice, and control: findings from a Massive Open Online Course.

Background: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages.

Methods: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn.

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

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.

Community Views on 'What I Want 'Before I Die'.

Few previous studies have formally examined people's wishes regarding what they want to do before they die. This study aimed to describe responses to an activity within a Massive Open Online Course (MOOC) where people considered what was important when faced with their own mortality. We asked participants to complete the following: "Before I Die, I want to…".