Validating care and treatment scenarios for measuring decisional conflict regarding future care preferences among older adults.

OBJECTIVE: Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision-making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life-sustaining treatments and care utilisation to inform their broader use in ACP studies. METHODS: Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. RESULTS: Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's = .31-.37, p < .001), and ACP engagement (r's = -.41 to -.37, p < .001) indicated convergent validity. CONCLUSION: A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. PATIENT OR PUBLIC CONTRIBUTION: The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life-limiting conditions and five current or former care partners.

Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions.

Although the progressive clinical trajectory of motor neurone disease (MND) is widely understood, multiple challenges remain preventing optimal end-of-life care for this population with unique needs from the patient, carer and service provider perspectives. This paper reports on the experiences, gaps in service and unmet needs of MND patients and family carers and explores public health palliative care approaches that would facilitate coordinated and integrated care to respond to their changing needs. This is a qualitative study of responses to questions in an online consumer survey (353 respondents) in Western Australia (2020), focusing on a subset of 29 current and bereaved carers of people with MND who have used health services in the last five years. The analysis identified themes, highlighting the insufficient integration of services across health and social care; poor and unequal access to coordinated palliative care; significant gaps in the knowledge base of the workforce and a failure to meet the consumer expectations of person-centred care. For palliative care to be accessible to those living with MND and other under-served conditions, there needs to be a shift to more comprehensive, inclusive and sustainable options, such as the public health approach to palliative/end-of-life care that engages the assets of local communities in partnership with health services, one example being the "Compassionate Communities Connectors" model of care. Further considerations include advocacy for policy changes, fostering partnerships and developing indicators for evaluating the impact of the proposed models of care. The end result is not only better care but substantial savings for the health system.

Socially, Culturally and Spiritually Sensitive Public Health Palliative Care Models in the Lower-income Countries: An Integrative Literature Review.

The demand for palliative care (PC) is ever-increasing globally. The emergence of COVID-19 pandemic has further accelerated the need for PC. In the lower-income countries (LICs), where PC need is highest, PC, the most humane, appropriate and realistic approach to care for patients and families affected by life-limiting illness, is minimal or non-existent. Recognising the disparity between high, middle and LICs, the World Health Organization (WHO) has recommended public health strategies for PC within the socioeconomic, cultural and spiritual contexts of individual countries. This review aimed to: (i) identify PC models in the LICs utilising public health strategies and (ii) characterise how social, cultural and spiritual components were integrated into these models. This is an integrative literature review. Thirty-seven articles were included from a search of four electronic databases - Medline, Embase, Global Health and CINAHL. Literature, both empirical and theoretical literature, published in English from January 2000 to May 2021 that mentioned PC models/services/programmes integrating public health strategies in the LICs were included in the study. A number of LICs utilised public health strategies to deliver PC. One-third of the selected articles highlighted the importance of integrating sociocultural and spiritual components into PC. Two main themes - WHO-recommended public health framework and sociocultural and spiritual support in PC and five subthemes - (i) suitable policies; (ii) availability and accessibility of essential drugs; (iii) PC education for health professionals, policymakers and the public; (iv) implementation of PC at all levels of healthcare and (v) sociocultural and spiritual components, were derived. Despite embracing the public health approach, many LICs encountered several challenges in integrating all four strategies successfully.

Qualitative insights into the palliative care experience of a hospice-based sensory room.

BACKGROUND: The use of multi-sensory rooms as a form of engagement with art in Palliative Care is largely unexplored. METHOD: This practice-based report discusses a qualitative study exploring the experiences of hospice-based inpatients receiving end-of-life care and their carers who immersed themselves into a multi-sensory room. RESULTS: Findings demonstrate that the room provided a safe space for reflection and reconnection that counteracted challenging times during their end of life. It fostered healing and wellbeing by alleviated suffering through respite and sharing of treasured memories with loved ones. Key considerations for future iterations are also discussed.

"Respecting our patients' choices": making the organizational decision to participate in voluntary assisted dying provision: findings from semi-structured interviews with a rural community hospice board of management.

BACKGROUND: There is limited literature around how palliative care organizations determine the degree to which they will interface with voluntary assisted dying in jurisdictions where it is legal. The aim of this research was to describe the experience of the board of management of an Australian community-based hospice during their decision-making process around whether to support voluntary assisted dying in the facility, prior to the legislation coming into operation. METHODS: The Board considered this decision over ten meetings in 2020, during which time they received information on the legislation, relevant literature, feedback from workshops which included the community, comment from hospice founders, staff survey results and presentations by clinicians able to discuss the impact of voluntary assisted dying on palliative care services. Members were encouraged to make notes of their own experiences during this time. Following this, semi-structured interviews were conducted with seven of the nine board members. Interviews were audio-recorded and transcribed verbatim and analysed using conventional qualitative content analysis method. RESULTS: The board members experienced a sense of journey in reaching an overall decision, which was to allow full participation in voluntary assisted dying provision for inpatients. Themes based on the journey motif included: starting from a personal view; moving to a hospice perspective; exploring if voluntary assisted dying can be part of end-of-life care; awareness and assessment of risks to the Hospice; arriving at a common platform to vote on; factors facilitating a safe decision-making journey; and personal impact of the journey. CONCLUSIONS: The group highlighted several facilitators of a successful outcome including having adequate time, the availability of useful resources, sound board processes and a trusting culture. The study may provide support to other healthcare organisations as they face similar decisions triggered by legislative change.

Being a safe place: a qualitative study exploring perceptions as to how a rural community hospice could respond to enactment of voluntary assisted dying legislation.

BACKGROUND: There is a lack of research to guide the implementation of voluntary assisted dying legislation within a hospice setting. Furthermore, there is limited published information related to the expectations of the community and staff to assist decision making regarding voluntary assisted dying in a community hospice. The aim of this study was to explore the expectations of staff, volunteers and members of the community as how a rural Australian community hospice could respond in relation to imminent enactment of Voluntary Assisted Dying legislation. METHODS: A total of 63 Hospice staff and volunteers and community members participated in 11 workshops. This qualitative study used the interpretive description method to analyse the workshop transcripts. RESULTS: While there was not a consensus view on community expectation, there was agreement among the participants for respect for a patient's individuality and choices. Furthermore, care offered in hospice needs to remain non-judgemental and patient focused regardless of whether voluntary assisted dying policy was implemented or not. Both opportunities and risks associated with implementation were identified by the participants. CONCLUSION: There was common ground around the respect for the dying person and the ideal of a "safe place" despite opposing views on what this may mean in practice. There is a need for clarity in organisational responses around policy, risk management, education, and staff support.

Healthcare professionals' views on how palliative care should be delivered in Bhutan: A qualitative study.

Palliative care aims to relieve serious health-related suffering among patients and families affected by life-limiting illnesses. However, palliative care remains limited or non-existent in most low- and middle- income countries. Bhutan is a tiny kingdom in the Himalayas where palliative care is an emerging concept. This study aimed to explore the views of Bhutanese healthcare professionals on how palliative care should be delivered in Bhutan. It is a component of a bigger research program aimed at developing a contextual based palliative care model for Bhutan. This is a descriptive qualitative study. Eleven focus group discussions and two in-depth interviews were conducted among healthcare professionals, recruited through purposeful sampling, from community health centres, district hospitals, regional and national referral hospitals, and the traditional hospital in Bhutan. The participants in this study emphasized the need for suitable palliative care policies; education, training and awareness on palliative care; adequate access to essential palliative care medicines; adequate manpower and infrastructure; and a multi-disciplinary palliative care team. Participants confirmed a socially, culturally and spiritually appropriate approach is crucial for palliative care services in Bhutan. Despite palliative care being a young concept, the Bhutanese healthcare professionals have embraced its importance, emphasized its urgent need and highlighted their views on how it should be delivered in the country. This study will help inform the development of a public health-focused palliative care model, socially, culturally and spiritually applicable to the Bhutanese people, as recommended by the World Health Organization.

Support Needs for Bhutanese Family Members Taking Care of Loved Ones Diagnosed with Advanced Illness.

Background: Palliative care aims to improve the quality of life of patients diagnosed with an advanced illness and their families. Family members, who often play a central role caring for their very ill loved ones, have significant support needs. In Bhutan, where palliative care is an emerging concept, the needs of family members have not been assessed thus far. Objective: This study explored the support needs of Bhutanese family members caring for their loved ones diagnosed with advanced illness. Methods: This is a cross-sectional descriptive study. Setting/Subjects: Study sites included the national referral hospital, the two regional referral hospitals, four district hospitals and Basic Health Units (Grade I and II), spread across Bhutan. Participants were recruited through purposeful and snowball sampling strategies. Data were collected from May to August 2019. The Carer Support Needs Assessment Tools (CSNAT) was used. Results: Despite unforeseen challenges, 46 family members out of 60 identified (77%) participated in the survey. Twenty-three (50%) cared for relatives with advanced cancer and the remainder for loved ones with non-malignant conditions. This study found high support needs among both groups. The priority needs included understanding their relative's illness, managing symptoms, providing personal care, financial aspects, dealing with their own feelings and emotions and knowing what to expect in the future. Conclusion: This study will help inform the World Health Organization recommended public health approach to palliative care modified to the Bhutanese context for enabling a cost-effective intervention to improve the quality of lives of patients and families.

Comparison of end-of-life care for people living in home settings versus residential aged care facilities: A nationwide study among Australian general practitioners.

We have little knowledge of differences in end-of-life care between home settings and residential aged care facilities (RACFs) where people spend most of their last year of life. This study aimed to compare end-of-life care between home settings and RACFs from the perspective of Australian general practitioners (GPs). A descriptive study was conducted with 62 GPs from Western Australia, Queensland and Victoria. Participants were asked to provide reports on end-of-life care of decedents in their practice using a validated clinic-based data collection process developed by our team between September 2018 and August 2019. Of the 213 reported expected deaths, 66.2% mainly lived at home in the last year of life. People living at home were more likely to die at a younger age (median 77 vs. 88, p < 0.001), to be male (51.1% vs. 33.3%, p = 0.01) and to die of cancer (53.9% vs. 4.2%, p < 0.001) compared to those in RACFs. There were no significant differences between the two patient groups for seven out of the eight assessed symptoms, except nausea. GPs' perceived roles in caring for patients and levels of their involvement in provision of common palliative care services were comparable between the two groups. The usual accommodation setting was most frequently considered the preferred place of death in both groups. However, more home residents ended up dying in hospital compared to RACF residents. There were significantly higher frequencies of end-of-life discussions (ORs ranged 5.46-9.82 for all topic comparisons) with GPs associated with people living at home versus RACFs. One opportunity for improved care is through promoting greater involvement of GPs in end-of-life discussions with RACF residents and staff. In general, more Australians could potentially remain at home until death if provided with greater access to essential specialist palliative care services and supportive services in home settings.

Specialist haematology consultation services in regional Western Australia: evaluating a model combining telehealth and onsite clinics.

BACKGROUND: Models of care that increase specialist medical services to regional or remote patients are being explored worldwide. Many of the models include telehealth (also called telemedicine or video-conferencing consultations) alone or in combination with traditional face-to-face clinic visits. AIM: To report the experience of patients using telehealth consultation and costs associated with delivering the service in a Regional Cancer Centre over a 12-month period. METHODS: Patients attending a Great Southern haematology clinic between September 2018 and July 2019 were invited to complete a brief questionnaire about their demographic and diagnosis details. Those attending a telehealth clinic were invited to complete a Tele-Haematology Satisfaction Questionnaire and invited to participate in a face-to-face interview regarding their general experiences and thoughts related to telehealth and face-to-face consultations. Occasions of service costs and direct hospital expenses were provided by the central health service's telehealth office. RESULTS: The use of telehealth alone or as part of a mixed model was acceptable and convenient for most patients. In addition, high levels of satisfaction were reported including improved access to specialist services, reduced travel time and an ease of use of the telehealth system. The total cost saving was A$308 per occasion of service. CONCLUSIONS: The present study demonstrated that the model was effective in providing outpatient services and cost effective to the health service, while being experienced as a satisfactory model by patients.

Palliative care needs among patients with advanced illnesses in Bhutan.

BACKGROUND: Palliative care improves the quality of lives of patients and families affected by advanced illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country. METHODS: This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants. RESULTS: Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease. CONCLUSIONS: The symptom burden experienced by patients affected by advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization.

Determining the feasibility and effectiveness of brief online mindfulness training for rural medical students: a pilot study.

BACKGROUND: We sought to determine the feasibility and effectiveness of a mindfulness training program, delivered online to medical students at a Rural Clinical School. METHODS: An 8-week online training program was delivered to penultimate-year medical students at an Australian Rural Clinical School during 2016. Using a mixed methods approach, we measured the frequency and duration of participants' mindfulness meditation practice, and assessed changes in their perceived stress, self-compassion and compassion levels, as well as personal and professional attitudes and behaviours. RESULTS: Forty-seven participants were recruited to the study. 50% of participants were practising mindfulness meditation at least weekly by the end of the 8-week program, and 32% reported practising at least weekly 4 months following completion of the intervention. There was a statistically significant reduction in participants' perceived stress levels and a significant increase in self-compassion at 4-month follow-up. Participants reported insights about the personal and professional impact of mindfulness meditation training as well as barriers to practice. CONCLUSIONS: The results provide preliminary evidence that online training in mindfulness meditation can be associated with reduced stress and increased self-compassion in rural medical students. More rigorous research is required to establish concrete measures of feasibility of a mindfulness meditation program.

Impact of a Nurse-Led Advance Care Planning Intervention on Satisfaction, Health-Related Quality of Life, and Health Care Utilization Among Patients With Severe Respiratory Disease: A Randomized Patient-Preference Trial.

CONTEXT: Previous work has found that facilitated advance care planning (ACP) interventions are effective in increasing ACP uptake among patients with severe respiratory disease. OBJECTIVES: The objective of this study was to investigate whether a nurse-led, facilitated ACP intervention among participants with severe respiratory disease impacts self-reported or clinical outcomes. METHODS: A multicenter, open-label, patient-preference, randomized controlled trial of a nurse-led facilitated ACP intervention was performed. Outcome measures included self-report scales (health care satisfaction and EQ-5D-5L health-related quality of life at three- and six-month follow-up), 12-month mortality, and health care utilization during the final 90 days of life. RESULTS: One hundred forty-nine participants were recruited across two study settings (metropolitan tertiary hospital respiratory department and rural sites) and 106 were allocated to receive the ACP intervention. There was no effect of the intervention on satisfaction with health care, health-related quality of life, or 12-month mortality rates. Among those participants who died during the follow-up period (N = 54), those allocated to the ACP intervention had significantly fewer outpatient consultations (7.51 vs. 13.6, P < 0.001). There were no changes in emergency department attendances, total hospital admissions or length of stay, or home nursing visits. Among those allocated to the ACP intervention, there was a reduced length of stay in acute hospital settings (7.76 vs. 11.5 nights, P < 0.001) and increased length of stay in palliative hospital settings (5.54 vs. 2.08, P < 0.001) during the final 90 days of life. CONCLUSION: A facilitated ACP intervention among patients with severe respiratory disease did not have an impact on satisfaction, health-related quality of life, or 12-month mortality rate. Facilitated ACP may be associated with a different type of health care utilization during the end-of-life period.

"A Real Bucket of Worms": Views of People Living with Dementia and Family Members on Supported Decision-Making.

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants' experiences with decision-making: "the person in relationship over time" and "maintaining involvement." Participant views on the practical issues associated with supported decision-making are addressed under the themes of "facilitating decision-making," "supported decision-making arrangements," "constraints on decision-making," and "safeguarding decision-making." While participants endorsed the principles of supported decision-making as part of their overarching strategy of "maintaining involvement" in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual "constraints on decision-making" also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a "spectrum approach" to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

The advance care planning nurse facilitator: describing the role and identifying factors associated with successful implementation.

Advance care planning (ACP) has been shown to improve end-of-life care, yet uptake remains limited. Interventions aimed at increasing ACP uptake have often used a 'specialist ACP facilitator' model. The present qualitative study appraised the components of an ACP facilitator intervention comprising nurse-led patient screening and ACP discussions, as well as factors associated with the successful implementation of this model in primary care and acute hospital settings across rural and metropolitan Western Australia. Semistructured interviews were undertaken with 17 health professionals who were directly or indirectly involved in the facilitator ACP intervention among patients with severe respiratory disease. Additional process data (nurse facilitator role description, agreements with participating sites) were used to describe the nurse facilitator role. The interview data identified factors associated with successful implementation, including patient factors, health professional factors, ACP facilitator characteristics and the optimal settings for the intervention. The primary care setting was seen as most appropriate, and time limitations were a key consideration. Factors associated with successful implementation included trusting relationships between the nurse facilitator and referring doctor, as well as opportunities for meaningful encounters with patients. This study suggests a model of ACP nurse facilitation based in primary care may be an acceptable and effective method of increasing ACP uptake.

The Challenge of Perioperative Advance Care Planning.

As our population ages, there will be an increasing number of patients with life-limiting disease who may be referred for major elective surgery and more pressingly may present acutely, requiring major emergency surgical intervention. Owing to the high risk of perioperative and postoperative complications associated this group of patients, it is paramount that specific advance care planning that encompasses a patient's goals of care and resuscitative status be clarified before undergoing surgery in this acute period. In doing so, this will lead to a better quality of life for patients with a limited trajectory and allow for more informed decisions to be made about their health care. Furthermore, it will help to prevent futile and inappropriate treatments that do not respect a patient's wishes and their clinical status. In this case discussion, we explore the key themes about the challenge of perioperative advance care planning for patients with life-limiting disease and provide a framework to help guide conversation in this crucial period.

Project to improve storage, access and incorporation of advance care plans in a regional Australian hospital.

PROBLEM: Despite acknowledged benefits, the impact of advance care planning on usual care is inconsistent. DESIGN: Quality improvement study. SETTING: A Western Australian regional hospital. KEY MEASURES FOR IMPROVEMENT: This project aimed to create a system for storing, accessing and incorporating advance care planning documents in clinical care. STRATEGIES FOR CHANGE: Interventions over 18 months addressed four areas: medical records processes for receiving and processing advance care planning documents; information technology solutions for electronic storage and alerts; clerical staff duties in regards advance care planning documents; and clinician education. EFFECTS OF CHANGE: There was a 12-fold increase in advance care planning documents stored electronically and 100% of audited notes had correct filing of advance care planning documents with an alert in place at follow-up audit. Clinician recognition of the presence of an advance care planning document improved. Detailed examples of interventions are described. LESSONS LEARNT: Repeated exposure to different forms of advance care planning education, in conjunction with simple but effective system changes can make a difference in changing established hospital practice. Final impact of these changes on end-of-life care requires further audit.

How couples with dementia experience healthcare, lifestyle, and everyday decision-making.

ABSTRACTObjectives:Recent research has demonstrated the challenges to self-identity associated with dementia, and the importance of maintaining involvement in decision-making while adjusting to changes in role and lifestyle. This study aimed to understand the lived experiences of couples living with dementia, with respect to healthcare, lifestyle, and "everyday" decision-making. DESIGN: Semi-structured qualitative interviews using Interpretative Phenomenological Analysis as the methodological approach. SETTING: Community and residential care settings in Australia. PARTICIPANTS: Twenty eight participants who self-identified as being in a close and continuing relationship (N = 13 people with dementia, N = 15 spouse partners). Nine couples were interviewed together. RESULTS: Participants described a spectrum of decision-making approaches (independent, joint, supported, and substituted), with these approaches often intertwining in everyday life. Couples' approaches to decision-making were influenced by "decisional," "individual," "relational," and "external" factors. The overarching themes of "knowing and being known," "maintaining and re-defining couplehood" and "relational decision-making," are used to interpret these experiences. The spousal relationship provided an important context for decision-making, with couples expressing a history and ongoing preference for joint decision-making, as an integral part of their experience of couplehood. However, the progressive impairments associated with dementia presented challenges to maintaining joint decision-making and mutuality in the relationship. CONCLUSIONS: This study illustrates relational perspectives on decision-making in couples with dementia. Post-diagnostic support, education resources, proactive dyadic interventions, and assistance for spouse care partners may facilitate more productive attempts at joint decision-making by couples living with dementia.

The Improving Rural Cancer Outcomes Trial: a cluster-randomised controlled trial of a complex intervention to reduce time to diagnosis in rural cancer patients in Western Australia.

This corrects the article DOI: 10.1038/bjc.2017.310.