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. Methods: We recruited and interviewed 10 bereaved family members to learn about their experiences using a death doula. This qualitative research took an interpretive phenomenological approach, and thematic analysis was used to analyse the data. Results: The most valuable attribute the families gained from death doulas was an increase in death literacy resulting in personal empowerment. Empowerment enabled positive end-of-life experiences for the family and personalised deaths for the patient. A novel finding was that the connections and knowledge shared between the death doula and family had a resonant effect, resulting in families being more comfortable with death and keen to share their knowledge with others. Therefore, family engagement of a death doula led to an increase in community awareness around death and dying. Conclusion: Family members' experience with a death doula was overwhelmingly positive, empowering them practically and emotionally to deliver the best end-of-life care. Empathy and sharing of knowledge by death doulas were valued by families and resulted in an increase in death literacy which provided families with opportunities to 'pay it forward'. Furthermore, the relationships formed between doulas and families have the potential for a lasting, resonant effect.

What are bereaved family members experience of using a death doula? To date, there are no research studies with a focus on family experiences using death doulas for end-of-life care. We interviewed 10 family members from Australia and the United States to understand what benefits death doulas provided, what complicating factors might be involved when engaging them and what value and impact they had on end-of-life care for families. The most valuable attribute the families' gained from death doulas was an increase in death literacy. There was a direct connection between this and a sense of empowerment for patients and families. Empowerment enabled positive end of life experiences for the family and personalised deaths for the patient.

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. The aim of this study was to examine death doula training organisations' views with regard to DD business models, incorporating the death doula role into other existing models of care, and role enactment. METHODS: An electronic survey was administered to 15 death doula training organisations in 5 countries asking additionally that they disseminate the survey. Responses were received from 13 organisations, based in Australia (n = 4), the US (n = 4), Canada (n = 2), the UK (n = 1), Sweden (n = 1) and New Zealand (n = 1). This paper provides the qualitative findings from four open-text questions posed within the survey related to models of care. RESULTS: Qualitative data analysis was inductive, themes were determined in relation to: (1) standardised business model for death doulas, (2) death doulas incorporated into existing models of care or existing funding options, (3) death doulas who volunteer their services rather than charge money, and (4) role specialisation such as has occurred with birth doulas. CONCLUSIONS: The death doula role has the potential to be formally recognised in the future under national registration schemes, accompanied by death doula training required via certification. Until such time the death doula role will continue to evolve much as the birth doula role has, organically and unstructured. How and if death doulas are incorporated into existing models of health or social care remains to be seen as the organisations that train them push for independence, flexibility and fiscal independence.

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. Methods: We conducted an online survey with Death Doula training organisations in five countries utilising both a targeted and snowball approach. Qualitative analysis was undertaken with themes pre-determined (apriori) due to the nature of the survey categories. Results: In total, representatives from 13 organisations in Australia, New Zealand, Sweden, Canada, United Kingdom, and United States responded. The organisations had provided training for 0 to 20 years, with one just starting and another training birth doulas and now expanding. Owners and trainers hold an array of qualifications such as academic, medical, non-medical, and life experience. Curricula have usually been developed locally, and not always included pedagogical consideration, a strategic business model, nor mapping processes such as gap analysis. The organisations are run similarly, and curricula have several consistent topics but with distinctly different approaches. Trainers' views are also mixed about the way to proceed with registration of the Death Doula role. Conclusion: The contrasting views of training organisations explain much of the ambiguity of Death Doulas themselves regarding standardisation of registration, education and role enactment. If heading towards the ultimate goal of professionalisation of the role then a challenging path lies ahead with little in the way of agreement in what this would require.

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. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.

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. Ethical approval was obtained. A descriptive cross-sectional study was conducted, and purposive sampling was used to survey death doulas registered with death doula training organisations, newsletters and email distribution lists. Questions were based on the researchers' previous findings about the role. One hundred and ninety completed or partially completed surveys were received. Results showed diversity within, and some commonalities across the sample in terms of: training, experience and skills; Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end-of-life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear-cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation.

How Can Activity Monitors Be Used in Palliative Care Patients?

Background: Physical activity in palliative care patients is closely linked to independence, function, carer burden, prognosis, and quality of life. Changes in physical activity can also be related to service provision needs, including requirements for support and prognosis. However, the objective measurement of physical activity is challenging, with options, including self-report, invasive and intensive measures such as calorimetry, or newer options such as pedometers and accelerometers. This latter option is also becoming more viable with the advent of consumer technology driven by the health and exercise industry. Objective: In this article, we highlight our experiences of activity monitoring in palliative care patients as part of telehealth trial. We also highlight the strengths and limitations of activity monitoring in the palliative care population and potential applications. Conclusions: Although the advent of consumer technology for activity measurement makes their use seem attractive in clinical settings for palliative care patients, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.

What role do Death Doulas play in end-of-life care? A systematic review.

Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end-of-life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end-of-life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of "an eldest daughter" or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.

Telemonitoring via Self-Report and Video Review in Community Palliative Care: A Case Report.

Continuous monitoring and management of a person's symptoms and performance status are critical for the delivery of effective palliative care. This monitoring occurs routinely in inpatient settings; however, such close evaluation in the community has remained elusive. Patient self-reporting using telehealth offers opportunities to identify symptom escalation and functional decline in real time, and facilitate timely proactive management. We report the case of a 57-year-old man with advanced non-small cell lung cancer who participated in a telehealth trial run by a community palliative care service. This gentleman was able to complete self-reporting of function and symptoms via iPad although at times he was reticent to do so. Self-reporting was perceived as a means to communicate his clinical needs without being a bother to the community palliative care team. He also participated in a videoconference with clinical staff from the community palliative care service and his General Practitioner. Videoconferencing with the nurse and GP was highly valued as an effective way to communicate and also because it eliminated the need for travel. This case report provides important information about the feasibility and acceptability of palliative care telehealth as a way to better manage clinical care in a community setting.

Case conferencing for palliative care patients - a survey of South Australian general practitioners.

Benefits of case conferencing for people with palliative care needs between a general practitioner, the person and other key participants include improving communication, advance care planning, coordination of care, clarifying goals of care and support for patient, families and carers. Despite a growing evidence base for the benefits, the uptake of case conferencing has been limited in South Australia. The aim of this study is to explore the beliefs and practice of South Australian general practitioners towards case conferencing for people with palliative care needs. Using an online survey, participants were asked about demographics, attitudes towards case conferencing and details about their most recent case conference for a person with palliative care needs. Responses were received from 134 general practitioners (response rate 11%). In total, 80% valued case conferencing for people with palliative care needs; however, <25% had been involved in case conferencing in the previous 2years. The major barrier was time to organise and coordinate case conferences. Enablers included general practitioner willingness or interest, strong relationship with patient, specialist palliative care involvement and assistance with organisation. Despite GPs' beliefs of the benefits of case conferencing, the barriers remain significant. Enabling case conferencing will require support for organisation of case conferences and review of Medicare Benefits Schedule criteria for reimbursement.

Funding models in palliative care: Lessons from international experience.

BACKGROUND: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. AIM: To assess national models and methods for financing and reimbursing palliative care. DESIGN: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. RESULTS: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. CONCLUSION: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

Using telehealth to support end of life care in the community: a feasibility study.

BACKGROUND: Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealth-based model of service provision for community based palliative care patients, carers and clinicians. METHODS: This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient's general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring (ACTRN12613000733774). RESULTS: The average age of patients was 71.6 years (range: 49 to 91 years). All 43 patients managed to enter data using the telehealth system. Self-reported data entered by patients and carers did identify changes in performance status leading to changes in care. Over 4000 alerts were generated. Staff reported that videocalls were similar (22.3%) or better/much better (65.2%) than phone calls and similar (63.1%) or better/much better (27.1%) than face-to-face. Issues with the volume of alerts generated, technical support required and the impact of service change were identified. CONCLUSIONS: The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12613000733774 registered on 02/07/2013.

Implementation of a pilot telehealth programme in community palliative care: A qualitative study of clinicians' perspectives.

BACKGROUND: Telehealth technologies are an emerging resource opening up the possibility of greater support if they have utility for patients, carers and clinicians. They may also help to meet health systems' imperatives for improved service delivery within current budgets. Clinicians' experiences and attitudes play a key role in the implementation of any innovation in service delivery. AIM: To explore clinicians' perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. DESIGN: Focus groups and interviews generated data that were analysed through the lens of a realistic evaluation theoretical framework. SETTING/PARTICIPANTS: The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. RESULTS: Service providers consider telehealth resources as a means to augment current service provision in a complementary way rather than as a replacement for face-to-face assessments. Introducing this technology, however, challenged the team to critically explore aspects of current service provision. The introduction of technologies also has the potential to alter the dynamic of relationships between patients and families and community palliative care clinicians. CONCLUSION: Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.

Communication differences when patients and caregivers are seen separately or together.

BACKGROUND: Southern Adelaide Palliative Care Services introduced a nurse-led early introduction to a palliative care clinic in 2011. The clinic offers a thorough psychosocial assessment and the provision of information and an introduction to future care planning. The patients and their caregivers are seen together by the nurse practitioner initially for a physical assessment. They are then seen by a social worker to focus on advanced care planning and assessment of social and emotional factors. After the social work visit, the patient and caregiver are separated, and the patient sees the psychosocial nurse for coping and adjustment to illness and the carer sees the caregiver network facilitator to assess their informal supports to assist in the role of community-based caregiving. The pilot study looks at the nature of communication in the clinic where patient and carer are together and compares that to when they are separated. METHODS: A total of 33 patients and their caregivers agreed for their coversations to be tape recorded between May and November of 2013. All tape recordings were transcribed verbatim. Ten patient transcripts (n=40) have been coded for quantitative analysis. The codes identify content and function of speech, cues for information and emotion and whether they are responded to by clinicians. RESULTS: Pilot results reveal that caregivers contribute little in the combined clinics and dominate the conversation in the private clinic. Patients, when seen alone, predominantly express emotion related cues, opposed to cues for information. The clinicians focus on their area of specialty, which results in little duplication in this clinic setting. CONCLUSION: An earlier evaluation of this clinic found that patients and their caregivers appreciate being separated in the clinic setting to have time and privacy to reveal fears and feelings related to end-of-life care. This current study quantifies the patient and caregiver experience and confirms those earlier findings.

Designing clinically valuable telehealth resources: processes to develop a community-based palliative care prototype.

BACKGROUND: Changing population demography and patterns of disease are increasing demands on the health system. Telehealth is seen as providing a mechanism to support community-based care, thus reducing pressure on hospital services and supporting consumer preferences for care in the home. OBJECTIVE: This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community. METHODS: The challenges and considerations in developing the palliative care telehealth prototype were reviewed against the Center for eHealth Research (CeHRes) framework, a telehealth development model. The project activities to develop the prototype were specifically mapped against the model's first four phases: multidisciplinary project management, contextual inquiry, value specification, and design. This project has been developed as part of the Telehealth in the Home: Aged and Palliative Care in South Australia initiative. RESULTS: Significant issues were identified and subsequently addressed during concept and prototype development. The CeHRes approach highlighted the implicit diversity in views and opinions among participants and stakeholders and enabled issues to be considered, resolved, and incorporated during design through continuous engagement. CONCLUSIONS: The CeHRes model provided a mechanism that facilitated "better" solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants. This collaboration enabled greater interaction and exchange among participants resulting in a more useful and clinically valuable telehealth prototype.

Do patients and carers find separate palliative care clinic consultations acceptable? A pilot study.

BACKGROUND: As differing patient and carer information needs have been reported, and in light of changing health-system priorities and issues identified in a self-assessment study, a specialist palliative care service established an interdisciplinary psychosocial assessment clinic to separately assess patient and carer needs. AIM: To determine the acceptability of the separate assessment to patients and carers. METHOD: Patients with a high functional score and who were deemed well enough to manage an appointment were invited to attend the clinic. Consent to follow-up was obtained. Patient and carer satisfaction surveys were developed based on existing tools. Questionnaires were posted out with a pre-paid reply envelope to patients and carers. Data from completed surveys was entered into a data management system and frequency analysis completed. A secondary analysis of the comments was undertaken. FINDINGS: The clinic was attended by 41 patients and 37 carers between September 2011 and the end of February 2012. There was a 46% response rate, with 24 questionnaires returned from both the patient and their carer, 6 from patients only, and 6 from carers only (2 of whom were bereaved). The opportunity for privacy to discuss their own fears and concerns related to the illness was appreciated by 94% of the patients and 83% of the carers. CONCLUSION: This initial pilot data shows patient and carer satisfaction with this clinic model. Further qualitative data would provide more information on the patient and carer experiences of the clinic.

Findings from a nursing scholarship study tour to inform a proposal for a day hospice model in South Australia.

South Australia releases national and international travel scholarships every year to the nursing and midwifery workforce to enable them to undertake observational site visits to inform the development of service models that can be introduced into care practices back in South Australia. Ten sites across New Zealand, Canada, and the UK agreed to host a site visit as part of a scholarship to look at day hospice (DH) programmes. The author undertook an observational study that included participation in DH programmes and discussions with staff and patients. There were many similarities across the three countries, in particular in the structure of the programmes, the staff makeup, and the support of the volunteer workforce. Two distinct models were observed: social and medical. Each has its value and both need to be incorporated to ensure services and participants have their needs met. Based on the site visits and other research, the author devised a proposal for South Australia to commence with a time-limited sessional group DH programme with a focus on maintenance of function for participants coupled with caregiver education and information provision.

Clinical networks influencing policy and practice: the establishment of advanced practice pharmacist roles for specialist palliative care services in South Australia.

OBJECTIVES: To operationalise the concept of 'advanced practice roles' in pharmacy within the new integrated regionalised palliative care service model outlined in the Palliative Care Services Plan 2009-2016, SA Health. METHODS: A working group was established under the auspices of the Palliative Care Clinical Network to progress the development of advanced practice pharmacist roles for regionalised palliative care services. A pharmacy stakeholder forum was conducted in December 2010 to provide further guidance on the advanced practice pharmacist roles in the following domains: education; network links and partnerships; quality and safety; and research. RESULTS: Advanced practice pharmacist positions were created for each of the three regionalised palliative care services in South Australia (SA). Funding was obtained for a Statewide Palliative Care Pharmacy Network project, to build a sustainable community-based palliative care pharmacy network. Advanced practice pharmacists commenced in the regionalised palliative care services of SA on 4 October 2011. CONCLUSIONS: The Statewide Palliative Care Clinical Network and the SA Palliative Care Plan provided a policy framework that supported involvement and advocacy in the planning of the advanced practice pharmacist roles. Collaboration between leaders in workforce reform, service planners, specialist palliative care providers and the pharmacy sector was a key enabler for developing the advanced practice pharmacist positions for regionalised palliative care services. What is known about the topic? The advanced practice palliative care pharmacist role reflects a new direction for the discipline of pharmacy and has been embraced at a time when a nationally endorsed Advanced Pharmacy Practice Framework has been published, while recognising that registration for pharmacists in Australia currently does not have specific endorsement for advanced practice. What does this paper add? This paper outlines the value of collaboration across settings and sectors. There is an opportunity for these roles to align with the new nationally endorsed framework for advanced practice in pharmacy. What are the implications for practitioners? These new positions strengthen the links between the hospital and community pharmacy sectors to enhance a quality use of medicines approach with improved access to end-of-life medicines for home-based palliative care clients, which actively facilitates a home death for those who choose it.

IMhPaCT: an education strategy for cross-training palliative care and mental health clinicians.

The Australian Integrated Mental Health and Palliative Care Task (IMhPaCT) project aimed to improve the quality of palliative care for people with a severe and persistent mental illness and those who develop mental health issues as a response to their diagnosis of a life-limiting illness. These patients and families are generally cases of high complexity and require strong collaboration and cooperation across various service sectors. Education across both palliative care and mental health services was identified as a key objective in improving palliative care service delivery in this patient population. This article specifically addresses one aspect of the project-the education strategy. The processes of development, implementation, and evaluation of outcomes are discussed.

Negotiating uncertain terrain: a qualitative analysis of clinicians' experiences of refractory suffering.

In palliative care, the witnessing of unrelieved (refractory) suffering takes its toll on all concerned; however, the effect on experienced palliative clinicians of witnessing such suffering has largely been unexplored. The aim of this study was to examine health care professionals' (nurses, doctors, and allied health workers) experiences of working with a patient's refractory suffering, together with their clinical management strategies. A qualitative research design involving semistructured interviews and an online questionnaire was used to collect the data. Seventeen experienced palliative care clinicians participated; 13 with face-to-face interviews and a further 4 by an online questionnaire. The overarching theme of negotiating uncertain terrain was common across all clinician narratives. In order for them to work successfully with a patient's refractory suffering, the clinicians had to negotiate areas of practice characterized by uncertainty, with no clear directions and with few expert guides. In reviewing their experiences, they identified within an overarching theme of negotiating uncertain terrain four subthemes: Changing Approach from "Fixing" to "Being With," Maintaining Perspective, Negotiating and Maintaining Boundaries, and Living the Paradoxes. This study highlights that dealing with patients' refractory suffering involves clinicians moving into uncertain and unexplored territory. For them to work effectively in this terrain the clinicians need wisdom, courage, and a commitment to journeying alongside the suffering person.