The role of psychologists in supporting illness-related dying and death: A systematic mixed studies review.

Psychologists remain underrepresented in end-of-life care, and there is limited understanding of their role among healthcare professionals, patients, and caregivers. This systematic mixed-studies review, prospectively registered on PROSPERO (CRD42020215775), explored the role of psychologists, and the facilitators and barriers they experience, in supporting clients with illness-related dying and death. A search of six research databases was conducted in October 2023. Fifty-one studies, mainly qualitative and from the perspectives of psychologists, met inclusion criteria. Thematic synthesis highlighted how psychologists provided expertise across various contexts. They supported clients with preparing for death, and adjusting to dying, provided professional consultancy and support, and undertook leadership in enhancing psychological end-of-life care. Results illustrated the sustaining factors and ongoing challenges working in end-of-life care, namely, the unique nature of navigating the death space, recognition and awareness of psychologists' contribution, and the support, training and development required. Given the universality of dying and death, this review is relevant to psychologists working within and beyond more traditional end-of-life care contexts, such as employee assistance programs, private practice, schools, and other psychological services. Policy, clinical and research implications are discussed, including the need for greater engagement and training of psychologists in the dying and death space.

Development of a palliative paramedicine framework to standardise best practice: A Delphi study.

BACKGROUND: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. AIM: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. DESIGN: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. SETTING/PARTICIPANTS: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. RESULTS: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. CONCLUSION: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.

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.

Accuracy of oncologists' estimates of expected survival time in advanced cancer.

BACKGROUND: To evaluate the claim that oncologists overestimate expected survival time (EST) in advanced cancer. METHODS: We pooled 7 prospective studies in which observed survival time (OST) was compared with EST (median survival in a group of similar patients estimated at baseline by the treating oncologist). We hypothesized that EST would be well calibrated (approximately 50% of EST longer than OST) and imprecise (<30% of EST within 0.67 to 1.33 of OST), and that multiples of EST would provide well-calibrated scenarios for survival time: worst-case (approximately 10% of OST <1/4 of EST), typical (approximately 50% of OST within half to double EST), and best-case (approximately 10% of OST >3 times EST). Associations between baseline characteristics and calibration of EST were assessed. RESULTS: Characteristics of 1,211 patients: median age 66 years, male 61%, primary site lung (40%) and upper gastrointestinal (16%). The median OST was 8 months, and EST was 9 months. Oncologists' estimates of EST were well calibrated (50% longer than OST) and imprecise (28% within 0.67 to 1.33 of OST). Scenarios for survival time based on simple multiples of EST were well calibrated: 8% of patients had an OST less than 1/4 their EST (worst-case), 56% had an OST within half to double their EST (typical), and 11% had an OST greater than 3 times their EST (best-case). Calibration was independent of age, sex, and cancer type. CONCLUSIONS: Oncologists were no more likely to overestimate survival time than to underestimate it. Simple multiples of EST provide well-calibrated estimates of worst-case, typical, and best-case scenarios for survival.

'It breaks a narrative of paramedics, that we're lifesavers': A qualitative study of health professionals', bereaved family members' and carers' perceptions and experiences of palliative paramedicine.

BACKGROUND: Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care. AIM: To elicit paramedics', palliative care doctors and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' experiences, perspectives, and attitudes on the role, barriers and enablers of paramedics delivering palliative and end-of-life care in community-based settings. DESIGN: A qualitative study employing reflexive thematic analysis of data collected from semi-structured online interviews was utilised. SETTING/PARTICIPANTS: A purposive sample of 50 stakeholders from all Australian jurisdictions participated. RESULTS: Five themes were identified: positioning the paramedic (a dichotomy between the life saver and community responder); creating an identity (the trusted clinician in a crisis), fear and threat (feeling afraid of caring for the dying), permission to care (seeking consent to take a palliative approach) and the harsh reality (navigating the role in a limiting and siloed environment). CONCLUSION: Paramedics were perceived to have a revered public identity, shaped by their ability to fix a crisis. However, paramedics and other health professionals also expressed fear and vulnerability when taking a palliative approach to care. Paramedics may require consent to move beyond a culture of curative care, yet all participant groups recognised their important adjunct role to support community-based palliative care.

Staff perspectives on end-of-life care for people living with dementia in residential aged care homes: qualitative study.

Introduction: People living with dementia in care homes can benefit from palliative approaches to care; however, not all will require specialist palliative care. The generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place, but little is known about their experiences. Objective: To describe staff perspectives on providing quality end-of-life care for people living with dementia in residential care and their families. Methods: Focus groups and semi-structured interviews were conducted with residential aged care managerial and frontline staff in Australia who were caring for residents living with dementia and end-of life needs. A comprehensive, then snowballing sampling strategy was used in participating care homes. Transcripts were analyzed using reflexive thematic analysis. Results: Fifteen semi-structured interviews and six focus groups were undertaken with 56 participants across 14 sites across two Australian states. Five themes were identified: putting the resident at the center (creating homes not hospitals, knowing the individual, a case management approach); articulating goals to grant wishes (initiating the conversation, broadening death literacy, avoiding hospitalization); a collective call to action (staffing the home, recognizing deterioration and escalating issues, communication channels and engaging GPs, managing medications, psychosocial supports); educating to empower staff (governance and guidance, mentoring juniors, self-care); and facilitating family acceptance (setting expectations, partnering in care, access at all hours). Discussion: Aged care staff are committed to providing person-centered palliative and end-of-life care for people living with dementia, recognizing the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes.

Effect of core versus enhanced implementation strategies on adherence to a clinical pathway for managing anxiety and depression in cancer patients in routine care: a cluster randomised controlled trial.

BACKGROUND: Optimal strategies to facilitate implementation of evidence-based clinical pathways are unclear. We evaluated two implementation strategies (Core versus Enhanced) to facilitate implementation of a clinical pathway for the management of anxiety and depression in cancer patients (the ADAPT CP). METHODS: Twelve cancer services in NSW Australia were cluster randomised, stratified by service size, to the Core versus Enhanced implementation strategy. Each strategy was in place for 12 months, facilitating uptake of the ADAPT CP (the intervention being implemented). The Core strategy included a lead team with champions, staff training and awareness campaigns prior to implementation, plus access to feedback reports and telephone or online support during implementation. The Enhanced strategy included all Core supports plus monthly lead team meetings, and proactive, ongoing advice on managing barriers, staff training and awareness campaigns throughout implementation. All patients at participating sites were offered the ADAPT CP as part of routine care, and if agreeable, completed screening measures. They were allocated a severity step for anxiety/depression from one (minimal) to five (severe) and recommended management appropriate to their severity step. Multi-level mixed-effect regression analyses examined the effect of Core versus Enhanced implementation strategy on adherence to the ADAPT CP (binary primary outcome: adherent ≥ 70% of key ADAPT CP components achieved versus non-adherent < 70%), with continuous adherence as a secondary outcome. Interaction between study arm and anxiety/depression severity step was also explored. RESULTS: Of 1280 registered patients, 696 (54%) completed at least one screening. As patients were encouraged to re-screen, there were in total 1323 screening events (883 in Core and 440 in Enhanced services). The main effect of implementation strategy on adherence was non-significant in both binary and continuous analyses. Anxiety/depression step was significant, with adherence being higher for step 1 than for other steps (p = 0.001, OR = 0.05, 95% CI 0.02-0.10). The interaction between study arm and anxiety/depression step was significant (p = 0.02) in the continuous adherence analysis only: adherence was significantly higher (by 7.6% points (95% CI 0.08-15.1%) for step 3 in the Enhanced arm (p = .048) and trending to significance for step 4. DISCUSSION: These results support ongoing implementation effort for the first year of implementation to ensure successful uptake of new clinical pathways in over-burdened clinical services. TRIAL REGISTRATION: ANZCTR Registration: ACTRN12617000411347 (Trial registered 22/03/2017; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true ).

Initiating advance care planning in New South Wales general practices using a structured conversation guide

METHOD: Three focus groups were held as part of an existing initiative, 'Ask, Share, Know: Rapid Evidence for General Practice Decisions'. Data were analysed using an inductive thematic approach; themes identified informed adaptation of the conversation guide. RESULTS: Five key themes were identified: 1. general practice provides the optimal context for ACP discussions; 2. ACP priorities differ between GPs; 3. healthcare professionals' roles in ACP vary; 4. confusion exists regarding ACP practice; and 5. the adapted conversation guide provides a useful structure for ACP. DISCUSSION: ACP practice varies between GPs. GPs preferred the adapted conversation guide, but further evaluation is required prior to implementation into practice.

Unmet spiritual needs in palliative care: psychometrics of a screening checklist.

BACKGROUND: While studies in palliative care use measures of spirituality and religious belief, there have been few validation studies of a screening tool that identifies unmet spiritual needs. METHODS: A multidisciplinary research team developed and examined the usefulness, reliability and validity of a 17-item Spiritual Concerns Checklist (SCC) as a screening tool for unmet spiritual needs. A cohort of patients recruited from three palliative care services in Sydney and Melbourne, Australia completed anonymous questionnaires. Factor structure and item response theory were used to examine its properties; concurrent validity employed the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). RESULTS: Among 261 patients, while only 15% directly sought spiritual care, nearly 62% identified at least one spiritual concern. Existential needs (fear of the dying process 32%; loss of control 31%), regret (20%), need for forgiveness (17%), guilt (13%), loss of hope (13%) and meaning (15%) were prominent concerns. Eleven concerns were present for more than 10% of the participants and 25% of religiously orientated participants expressed >4 concerns. The 17-item SCC was unidimensional, with satisfactory reliability. Concurrent validity was evident in the reduced sense of meaning and peace on the FACIT-Sp-12. CONCLUSION: This preliminary Rasch analysis of the newly developed SCC has demonstrated its usefulness, reliability and validity. Our findings encourage refinement and ongoing development of the SCC with further investigation of its psychometric properties in varying populations.

Australian residential aged care home staff experiences of implementing an intervention to improve palliative and end-of-life care for residents: A qualitative study.

Access to high-quality and safe evidence-based palliative care (PC) is important to ensure good end-of-life care for older people in residential aged care homes (RACHs). However, many barriers to providing PC in RACHs are frequently cited. The Quality End-of-Life Care (QEoLC) Project was a multicomponent intervention that included training, evidence-based tools and tele-mentoring, aiming to equip healthcare professionals and careworkers in RACHs with knowledge, skills and confidence in providing PC to residents. This study aims to understand: (1) the experiences of healthcare professionals, careworkers, care managers, planners/implementers who participated in the implementation of the QEoLC Project; and (2) the barriers and facilitators to the implementation. Staff from two RACHs in New South Wales, Australia were recruited between September to November 2021. Semi-structured interviews and thematic data analysis were used. Fifteen participants (seven health professionals [includes one nurse, two clinical educators, three workplace trainers, one clinical manager/nurse], three careworkers and five managers) were interviewed. Most RACH participants agreed that the QEoLC Project increased their awareness of PC and provided them with the skills/confidence to openly discuss death and dying. Participants perceived that the components of the QEoLC Project had the following benefits for residents: more appropriate use of medications, initiation of timely pain management and discussions with families regarding end-of-life care preferences. Key facilitators for implementation were the role of champions, the role of the steering committee, regular clinical meetings to discuss at-risk residents and mentoring. Implementation barriers included: high staff turnover, COVID-19 pandemic, time constraints, perceived absence of executive sponsorship, lack of practical support and systems-related barriers. The findings underline the need for strong leadership, supportive organisational culture and commitment to the implementation of processes for improving the quality of end-of-life care. Furthermore, the results highlight the need for codesigning the intervention with RACHs, provision of dedicated staff/resources to support implementation, and integration of project tools with existing systems for achieving effective implementation outcomes.

Palliative paramedicine: Comparing clinical practice through guideline quality appraisal and qualitative content analysis.

BACKGROUND: Palliative care is an emerging scope of practice for paramedicine. The COVID-19 pandemic has highlighted the opportunity for emergency settings to deliver palliative and end-of-life care to patients wishing to avoid intensive life-sustaining treatment. However, a gap remains in understanding the scope and limitations of current ambulance services' approach to palliative and end-of-life care. AIM: To examine the quality and content of existing Australian palliative paramedicine guidelines with a sample of guidelines from comparable Anglo-American ambulance services. DESIGN: We appraised guideline quality using the AGREE II instrument and employed a collaborative qualitative approach to analyse the content of the guidelines. DATA SOURCES: Eight palliative care ambulance service clinical practice guidelines (five Australian; one New Zealand; one Canadian; one United Kingdom). RESULTS: None of the guidelines were recommended by both appraisers for use based on the outcomes of all AGREE II evaluations. Scaled individual domain percentage scores varied across the guidelines: scope and purpose (8%-92%), stakeholder involvement (14%-53%), rigour of development (0%-20%), clarity of presentation (39%-92%), applicability (2%-38%) and editorial independence (0%-38%). Six themes were developed from the content analysis: (1) audience and approach; (2) communication is key; (3) assessing and managing symptoms; (4) looking beyond pharmaceuticals; (5) seeking support; and (6) care after death. CONCLUSIONS: It is important that ambulance services' palliative and end-of-life care guidelines are evidence-based and fit for purpose. Future research should explore the experiences and perspectives of key palliative paramedicine stakeholders. Future guidelines should consider emerging evidence and be methodologically guided by AGREE II criteria.

Australian general practice experiences of implementing a structured approach to initiating advance care planning and palliative care: a qualitative study.

OBJECTIVES: Initiation of advance care planning (ACP) and palliative care (PC) assessments in general practice is key to quality end-of-life care. The Advance Project promotes a team-based approach to initiating ACP and PC needs assessment in general practices through training, resources and practical support for implementation from local primary health networks (PHNs). This paper aims to understand: (1) general practice participants' experiences of undertaking Advance Project training and implementing the Advance Project resources in their practices; (2) barriers and facilitators to implementation of Advance Project resources; and (3) PHN staff experiences of supporting general practices through training and practical support for implementation of the Advance Project resources. DESIGN: Qualitative study using semistructured interviews and thematic analysis. SETTING: Twenty-one general practices and four PHNs from three Australian states were recruited between June 2019 and May 2020. PARTICIPANTS: General practitioners (GPs), general practice nurses, practice managers (PMs) and PHN staff. RESULTS: 45 participants comprising 13 GPs, 13 general practice nurses, 9 PMs, 3 allied health staff and 7 PHN staff were interviewed. The general practice participants generally agreed that the Advance Project training/resources led to changes in their own behaviour and increased their awareness of the importance of ACP/PC discussion with their patients. Participants reported the following benefits for patients: increased awareness of ACP; engagement with families/carers and peace of mind. Key facilitators for successful implementation were a team-based approach, the role of the PHN, the role of practice champions, training facilitators' ability to influence peers and facilitate change, and mentoring support. Barriers to implementation included issues related to workplace culture, cost, time/workload, patients and health system. CONCLUSION: Findings suggest that the Advance Project approach facilitated successful implementation of ACP and PC needs assessment into usual care in general practices that encouraged teamwork among GPs and general practice nurses. The ability of the practice to make the best use of practical support and guidance available to them through their local PHN both before and during implementation was a key factor in integration of Advance Project resources into routine practice.

Barriers and facilitators to nurse-led advance care planning and palliative care practice change in primary healthcare: a qualitative study.

Primary care settings are ideal for initiating advance care planning (ACP) conversations and assessing palliative and supportive care needs. However, time constraints and a lack of confidence to sensitively and efficiently initiate such discussions are noted barriers. The Advance Project implemented a national multicomponent training package to support Australian general practice nurses (GPNs) to work with GPs to initiate ACP and palliative care conversations in their practice. This paper reports on semistructured interviews conducted with 20 GPNs to explore barriers and facilitators to implementing the Advance Project model. Participants identified a range of factors that affected implementation, including lack of time, limited support from colleagues, lack of knowledge about systems and funding processes in general practice and a need for better alignment of the Advance Project resources and practices with general practice information management platforms. Barriers related to professional roles, particularly the lack of clarity and/or limitations in the scope of practice of GPNs, highlighted the importance of defining and supporting the roles that different primary health practice staff could play to support implementation of the model. The findings underline the need for complementary training in the Advance Project model for GPs and practice managers to enable a team-based approach to implementation.

Paramedics delivering palliative and end-of-life care in community-based settings: A systematic integrative review with thematic synthesis.

BACKGROUND: There is a growing demand for community palliative care and home-based deaths worldwide. However, gaps remain in this service provision, particularly after-hours. Paramedicine may help to bridge that gap and avoid unwanted hospital admissions, but a systematic overview of paramedics' potential role in palliative and end-of-life care is lacking. AIM: To review and synthesise the empirical evidence regarding paramedics delivering palliative and end-of-life care in community-based settings. DESIGN: A systematic integrative review with a thematic synthesis was undertaken in accordance with Whittemore and Knafl's methodology. Prospero: CRD4202119851. DATA SOURCES: MEDLINE, CINAHL, PsycINFO and Scopus databases were searched in August 2020 for primary research articles published in English, with no date limits applied. Articles were screened and reviewed independently by two researchers, and quality appraisal was conducted following the Mixed-Methods Appraisal Tool (2018). RESULTS: The search retrieved 5985 articles; 23 articles satisfied eligibility criteria, consisting of mixed-methods (n = 5), qualitative (n = 7), quantitative descriptive (n = 8) and quantitative non-randomised studies (n = 3). Through data analysis, three key themes were identified: (1) Broadening the traditional role, (2) Understanding patient wishes and (3) Supporting families. CONCLUSIONS: Paramedics are a highly skilled workforce capable of helping to deliver palliative and end-of-life care to people in their homes and reducing avoidable hospital admissions, particularly for palliative emergencies. Future research should focus on investigating the efficacy of palliative care clinical practice guideline implementation for paramedics, understanding other healthcare professionals' perspectives, and undertaking health economic evaluations of targeted interventions.

Spirituality and religiosity in a palliative medicine population: mixed-methods study.

BACKGROUND: Spiritual care allows palliative care patients to gain a sense of purpose, meaning and connectedness to the sacred or important while experiencing a serious illness. This study examined how Australian patients conceptualise their spirituality/religiosity, the associations between diagnosis and spiritual/religious activities, and views on the amount of spiritual support received. METHODS: This mixed-methods study used anonymous semistructured questionnaires, which included the Functional Assessment of Chronic Illness Therapy-Spiritual Scale-12 (FACIT-SP-12) and adapted and developed questions examining religion/spirituality's role and support. RESULTS: Participants numbered 261, with a 50.9% response rate. Sixty-two per cent were affiliated with Christianity and 24.2% with no religion. The mean total FACIT-SP-12 score was 31.9 (SD 8.6). Patients with Christian affiliation reported a higher total FACIT-SP-12 score compared with no religious affiliation (p=0.003). Those with Christian and Buddhist affiliations had higher faith subscale scores compared with those with no religious affiliation (p<0.001). Spirituality was very important to 39.9% and religiosity to 31.7% of patients, and unimportant to 30.6% and 39.5%, respectively. Following diagnosis, patients prayed (p<0.001) and meditated (p<0.001) more, seeking more time, strength and acceptance. Attendance at religious services decreased with frailty (p<0.001), while engagement in other religious activities increased (p=0.017). Patients who received some level of spiritual/religious support from external religious/faith communities and moderate to complete spiritual/religious needs met by the hospitals reported greater total FACIT-SP-12 spirituality scores (p<0.001). CONCLUSION: Respectful inquiry into patients spiritual/religious needs in hospitals allows for an attuned approach to addressing such care needs while considerately accommodating those disinterested in such support.

"A good death but there was all this tension around"- perspectives of residential managers on the experience of delivering end of life care for people living with dementia.

BACKGROUND: End of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia. METHODS: Focus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis. RESULTS: 20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding. CONCLUSION: Aged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident's terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.

Specialist palliative care staff's varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews.

BACKGROUND: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. AIM: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. DESIGN: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. SETTING/PARTICIPANTS: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. RESULTS: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). CONCLUSIONS: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.

Professionals' views and experiences in supporting decision-making involvement for people living with dementia.

BACKGROUND: The provision of supported decision-making for people living with disabilities is an emerging area of practice and rights-based law reform, and is required under international law. OBJECTIVES: This qualitative study aimed to understand how Australian health and legal professionals conceptualised their professional roles in the practice of providing decision-making support for people living with dementia. METHODS: The methods were informed by grounded theory principles. In-depth, semi-structured interviews were conducted with 28 health and legal professionals involved in providing care or services for people with dementia. Interviews explored how professionals described their practice of providing support for decision-making and how they conceptualised their roles. The analysis was underpinned by the theoretical perspective of symbolic interactionism. RESULTS: Participants described providing support across a range of decision domains, some of which were specific to their professional role. Four key themes were identified: 'establishing a basis for decision-making', 'the supportive toolbox', 'managing professional boundaries' and 'individualist advocacy versus relational practice'. Participants identified a range of generic and specialised techniques they used to provide support for people with dementia. These techniques were applied subject to resource limitations and perceived professional obligations and boundaries. A continuum of professional practice, ranging from 'individualist advocacy' to 'relational practice' describes the approaches adopted by different professionals. DISCUSSION: Professionals conceptualised their role in providing support for decision-making through the lens of their own profession. Differences in positioning on the continuum of 'individualist advocacy' through to 'relational practice' had practical implications for capacity assessment, engaging with persons with impaired decision-making capacity, and the inclusion of supporters and family members in decision-making processes. Further progress in implementing supported decision-making (including through law and policy reform) will require an understanding of these inter-professional differences in perceived roles relating to the practice of providing decision-making support.

Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

BACKGROUND: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. METHODS: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings. RESULTS: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly. CONCLUSIONS: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.

Prevalence of advance care planning documentation and self-reported uptake in older Australians with a cancer diagnosis.

BACKGROUND: Advance care planning (ACP) and completion advance care directives (ACDs) is recommended for patients with cancer. Documentation needs to be available at the point of care. OBJECTIVE(S): To describe the prevalence of ACDs in health records and the self-reported awareness of and engagement in ACP as reported by older Australians with cancer, and to examine the concordance between self-reported completion of and presence of documentation in participants' health records. DESIGN/SETTING/PARTICIPANTS: Prospective multi-center audit of health records, and a self-report survey of eligible participants in 51 Australian health and residential aged care services. The audit included 458 people aged ≥65 years with cancer. RESULTS: 30% had ≥ ACD located in their record. 218 people were eligible for survey completion; 97 (44% response rate) completed it. Of these, 81% had a preference to limit some/all treatments, 10% wanted to defer decision-making to someone else, and 9% wanted all treatments. Fifty-eight percent of survey completers reported having completed an ACP document. Concordance between documentation in the participant's record and self-report of completion was 61% (k = 0.269), which is only fair agreement. CONCLUSION(S): Whilst 30% of participants had at least one ACD in their record, 58% self-reported document completion, and concordance between self-reported completion and presence in records was only fair. This is significant given most people had a preference for some/all limitation of treatment. Further ACP implementation strategies are required. These include a systematic approach to embedding ACP into routine care, workforce education, increasing community awareness, and looking at e-health solutions to improve accessibility at the point of care.