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.

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 ).

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.

Practitioners' perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study.

OBJECTIVES: In oncology and palliative care, patient question prompt lists (QPLs) with sample questions for patient and family increased patients' involvement in decision-making and improved outcomes if physicians actively endorsed asking questions. Therefore, we aim to evaluate practitioners' perceptions of acceptability and possible use of a QPL about palliative and end-of-life care in dementia. DESIGN: Mixed-methods evaluation study of a QPL developed with family caregivers and experts comprising a survey and interviews with practitioners. SETTING: Two academic medical training centres for primary and long-term care in the Netherlands. PARTICIPANTS: Practitioners (n=66; 73% woman; mean of 21 (SD 11) years of experience) who were mostly general practitioners and elderly care physicians. OUTCOMES: The main survey outcome was acceptability measured with a 15-75 acceptability scale with ≥45 meaning 'acceptable'. RESULTS: The survey response rate was 21% (66 of 320 participated). The QPL was regarded as acceptable (mean 51, SD 10) but 64% felt it was too long. Thirty-five per cent would want training to be able to answer the questions. Those who felt unable to answer (31%) found the QPL less acceptable (mean 46 vs 54 for others; p=0.015). We identified three themes from nine interviews: (1) enhancing conversations through discussing difficult topics, (2) proactively engaging in end-of-life conversations and (3) possible implementation. CONCLUSION: Acceptability of the QPL was adequate, but physicians feeling confident to be able to address questions about end-of-life care is crucial when implementing it in practice, and may require training. To facilitate discussions of advance care planning and palliative care, families and persons with dementia should also be empowered to access the QPL themselves.

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.

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.

Dying still matters in the age of COVID-19.

The ongoing COVID-19 pandemic is having a significant impact on people with palliative care needs.

Prognostic Awareness in Adult Oncology and Palliative Care.

Communicating prognosis clearly and empathically can foster accurate prognostic awareness in patients with advanced cancer and their family members. Whereas patients and doctors desire clear prognostic communication, it presents many challenges in oncologic and palliative care settings. Patients with advanced cancer often have poor prognostic awareness as a result of deficiencies in doctor communication and understandable-and potentially adaptive-attempts by patients and families to reduce the threat of death and maintain hope. Interventions to promote prognostic discussion have largely succeeded in increasing the frequency, but not necessarily the quality, of such discussions, yet have failed to improve prognostic awareness. Because clear communication of prognosis is an ethical mandate, more research is needed to provide an evidence base for teaching and practice in this area.

Palliative Caregivers' Spirituality, Views About Spiritual Care, and Associations With Spiritual Well-Being: A Mixed Methods Study.

BACKGROUND: Spiritual care is integral to palliative care. It engenders a sense of purpose, meaning, and connectedness to the sacred or important and may support caregiver well-being. AIM: To examine caregivers' spirituality, religiosity, spiritual well-being, and views on spiritual/religious support. DESIGN: A mixed-methods study across 4 Australian sites, recruiting caregivers of patients with a life expectancy of under 12 months. The anonymous semistructured questionnaire used included research team developed and adapted questions examining religion/spirituality's role and support and views on hospitals supporting spiritual/religious requirements. It additionally included the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). RESULTS: One hundred nine caregivers participated (47.4% responded). Median spiritual well-being was 30.5 on FACIT-Sp-12. Religious affiliation was associated with higher Faith subscores (P < .001). Spirituality was very important to 24.5%, religiosity to 28.2%, and unimportant to 31.4% and 35.9%, respectively. Caregivers prayed (P = .005) and meditated (P = .006) more following patients' diagnoses, gaining comfort, guidance, and strength. Caregivers whose spiritual/religious needs were met to moderate/full extent by external religious/faith communities (23.8%) reported greater spiritual well-being (P < .001). Hospitals supported moderate/full caregiver spiritual needs in 19.3%. Pastoral care visits comforted 84.4% of those who received them (n = 32) but elicited discomfort in 15.6%. Caregivers also emphasized the importance of humane staff and organizational tone in supporting spiritual care. CONCLUSIONS: Hospital-based spiritual care providers should seek to identify those who seek pastoral or religiously orientated care. Genuine hospitality of showing concern for the other ensures the varied yet inevitably humanist requirements of the caregiver community are met.

Fidelity is fundamental: intervention predictors in advance care plans in terminal cancer.

OBJECTIVES: Assessing whether interventions are implemented as intended (fidelity) is critical to establishing efficacy in clinical research yet rarely applied in advance care planning (ACP) interventions. We aimed to develop and implement a fidelity audit tool for an ACP intervention. METHODS: We developed a fidelity audit tool assessing: (A) content; (B) quality (general communication, eliciting EOL preferences and prognostic communication); and (C) family/caregiver involvement. We audited (double-coded) 55 audio-recordings of ACP discussions delivered to advanced cancer patients and caregivers, within a clinical trial. RESULTS: Fidelity to content was high: mean=9.38/11 but lower for the quality of general communication (mean=12.47/20), discussion of patient preferences (mean=4.67/7), prognosis (mean=3.9/6) and family/caregiver involvement (mean=2.67/4). Older patient age and caregiver religiosity were associated with higher fidelity. Higher fidelity to content was associated with the trial primary outcome of family caregiver report of patient wishes being discussed and met. CONCLUSIONS: Fidelity to content, but not quality, of the ACP intervention is strong. Communication skills training is critical for ACP interventionists. Adherence was higher with older patients and religious carers, factors that may influence acceptance of death and readiness to undertake ACP, making the discussion easier. TRIAL REGISTRATION NUMBER: ACTRN12613001288718.

How and how much is spirituality discussed in palliative care consultations for advanced cancer patients with and without a question prompt list?

OBJECTIVE: Patients want to discuss spirituality more with their doctors but feel disempowered. Question prompt lists (QPLs) assist conversations. This study assessed the impact of a QPL on spirituality discussions in Palliative Care (PC). METHODS: This was a sub-study of a trial in which PC patients were randomised to either receive a QPL prior to a consultation or not, to see whether its provision influenced advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a PC physician. Consultations were recorded and transcribed. Transcriptions were analysed to examine the frequency and content of spirituality discussions. We conducted logistic regression to investigate the impact of the QPL and other predictors. RESULTS: 174 patients participated. Spirituality was discussed in half the consultations. Patients receiving a QPL discussed spirituality 1.38 times more than controls. This finding did not reach statistical significance. First PC consultation and being asked about their concerns by the doctor were significant predictors of a spiritual discussion. CONCLUSION: Patients are more likely to discuss spirituality in their first PC consultation, and when their doctor asks them about their concerns. PRACTICE IMPLICATIONS: Doctors caring for patients at the end of life should routinely raise spiritual issues.

A randomised controlled trial of an advance care planning intervention for patients with incurable cancer.

BACKGROUND: We modified and evaluated an advance care planning (ACP) intervention, which had been shown to improve compliance with patient's end of life (EoL) wishes, in a different patient population. METHODS: Patients with incurable cancer, and a Family Member (FM), were randomised one-to-one to usual care or usual care plus an ACP intervention, between April 2014 and January 2017. Oncologists and participants were non-blinded. ACP was based on the Respecting Patient Choices model, with an offer to provide individualised ranges for typical, best-case and worst-case scenarios for survival time. Seven facilitators (two oncology nurses, two nurses and three allied health professionals) delivered the intervention within 2 weeks of study enrolment. The primary outcome measure, assessed by interviewing the FM 3 months after patient death, was the FM perception that the patient's wishes were discussed, and met. RESULTS: Six hundred and sixty-five patients from seven Australian metropolitan oncology centres were referred for consideration by their oncologists, 444 (67%) met the study inclusion criteria and were approached by a study researcher. Two hundred and eight patients (47%) and their FM entered the trial as dyads. Fifty-three (46%) dyads in the ACP group and 63 (54%) dyads in the usual-care group had complete primary outcome data (p = 0.16). Seventy-nine patients and 53 FMs attended an ACP discussion. Mean length of discussion was 57 min. FMs from 23 (43%) dyads allocated to ACP and 21 (33%) dyads allocated usual care reported the patient's EoL wishes were discussed and met (difference 10%, 95% CI: -2 to 8, p = 0.27). There were no differences in EoL care received, patient satisfaction with care; FM satisfaction with care or with death; or FM well being. Rates of palliative care referral were high in both groups (97% vs 96%). CONCLUSIONS: A formal ACP intervention did not increase the likelihood that EoL care was consistent with patients' preferences.

Exploring symptom meaning: perspectives of palliative care physicians.

CONTEXT: Understanding patients' symptom experiences is essential to providing effective clinical care. The discussion between patients and physicians of symptom meaning and its significance, however, is ill understood. OBJECTIVES: To investigate palliative care physicians' understanding of symptom meaning, and their experiences of and attitudes towards the discussion of symptom meaning with patients. METHODS: Semi-structured interviews were conducted (N = 17) across Sydney, Australia. Transcripts were analysed using framework analysis. RESULTS: Six key themes were identified: (1) definitions of symptom meaning (causal meanings, functional impact, existential impact, and cascade of meanings); (2) meanings are personal (demographic, culture, spiritual, and family differences); (3) eliciting meanings requires subtlety and trust (following the patient's cues); discussing meaning can be (4) hard (for the patient and health professional); (5) therapeutic (assuaging fears, feeling listened to and valued, increased sense of control, and reduced symptom distress); and (6) enhances clinicians' practice and work satisfaction (provision of more tailored care, reassurance through the provision of information, and strengthening of doctor-patient relationship). CONCLUSIONS: Exploring symptom meaning can serve to provide information, alleviate anxiety, and facilitate individualised care, but only when patients present cues or are open to discuss symptom-related concerns. However, various barriers hinder such dialogue in consultations. Greater awareness of symptom meaning and its influence may facilitate physicians exploring symptom meaning more with patients in the future.