Women's expectations about birth, requests for pain relief in labor and the subsequent development of birth dissonance and trauma.

BACKGROUND: Birth is a significant event in women's lives. As Mansfield notes (2008) many women aim for a birth that avoids pharmacological pain relief because they are advised it is better for them and their baby. For women having their first baby, this may not be realistic as 3/4 of primiparous women in Australia will use pharmacological pain relief. This study examines the expectations that a group of women had regarding pain relief, how these expectations developed and what happened to requests for pain relief in labour. METHODS: A longitudinal prospective study design was used to recruit 15 women who were having their first baby. Women having low risk pregnancies, hoping for a 'natural birth' (vaginal, no/minimal pharmacological pain relief) were eligible. A semi-structured interview tool was used across all three interviews that asked women about their expectations, then actual labour experience, pain management requests and how these were responded to by carers. Fifteen women were interviewed - at 36 weeks gestation; as soon after delivery of their baby as possible, then six months post-delivery (N = 43 interviews). Interviews were recorded and transcribed and coded by ES using NVivo software with hierarchical thematic analysis used. RESULTS: The study found that women appear to experience a mismatch between expectations they had developed pre-birth, versus actual experience. This appears to cause a specific form of dissonance - which we have termed 'birth dissonance' leaving them feeling traumatised post birth. This is because what women expected to happen in birth was often not realised. In particular, some women requested pain relief in birth and felt that their request was not responded to as hoped, and also seemed to develop post-birth trauma. We proposed that this may have resulted from dissonance arising from their expectations about being able to birth without significant pain relief. Interventions and technology may also contribute to this sense of mismatch and post-birth trauma. CONCLUSIONS: Low risk birthing women birthing in a hospital may have to engage with higher levels of technology, intervention and pain relief than that which they expected pre-birth. This could possibly be avoided with four simple changes. Firstly, better pre-birth education for women about how painful labor is likely to be. Secondly, pre-birth education which includes a detailed explanation of the utility of pharmacological and non-pharmacological pain relief. Thirdly, more egalitarian decision-making during labour and finally delivering upon women's requests for pain relief in labor, at the time that they ask for it. Further research is required to determine the extent of birth dissonance and how women making the transition to motherhood can avoid it.

Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study.

PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region. CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.

Support for and willingness to be involved in voluntary assisted dying: a multisite, cross-sectional survey study of clinicians in Victoria, Australia.

BACKGROUND: In the Australian state of Victoria, specialist doctors are central to the operation of voluntary assisted dying (VAD). However, a broad range of clinicians may be involved in the care of patients requesting or using VAD. AIMS: To describe levels of support for and willingness to be involved in VAD and consider factors associated with clinician support for the VAD legislation and physicians' willingness to provide VAD in practice. METHODS: A multisite, cross-sectional survey of clinicians in seven Victorian hospitals. All clinicians were invited to complete an online survey measuring demographic characteristics, awareness of and support for the VAD legislation, willingness to participate in VAD related activities and reasons for willingness or unwillingness to participate in VAD. RESULTS: Of 5690 who opened the survey, 5159 (90.1%) were included in the final sample and 73% (n = 3768) supported the VAD legislation. The strongest predictor of support for the VAD legislation was clinical role. Forty percent (n = 238) of medical specialists indicated they would be willing to participate in either the VAD consulting or coordinating role. Doctors did not differ in willingness between high impact (44%) and low impact specialty (41%); however, doctors specialising in palliative care or geriatric medicine were significantly less willing to participate (27%). CONCLUSION: Approximately 73% of surveyed staff supported Victoria's VAD legislation. However, only a minority of medical specialists reported willingness to participate in VAD, suggesting potential access issues for patients requesting VAD in accordance with the legal requirements in Victoria.

Advance care directive prevalence among older Australians and associations with person-level predictors and quality indicators.

BACKGROUND: Advance care planning (ACP) conversations may result in preferences for medical care being documented. OBJECTIVE: To explore the uptake and quality of advance care directives (ACDs) among older Australians accessing health and aged care services, by overall ACP documentation prevalence, person-level predictors and ACD quality indicators. DESIGN AND SETTING: National multi-centre health record audit in general practices (GP), hospitals and residential aged care facilities (RACF). PARTICIPANTS: A total of 4187 people aged ≥65 years attending their GP (n = 676), admitted to hospital (n = 1122) or residing in a RACF (n = 2389). MAIN OUTCOME MEASURES: ACP documentation prevalence by setting and type including person-completed ACDs and non-ACD documents (completed by a health professional or someone else); person-level predictors and quality indicators of ACDs. RESULTS: Overall ACP documentation prevalence was 46.5% (29.2% weighted). ACD prevalence was 25.3% (14.2% weighted). Unweighted ACD prevalence was higher in RACFs (37.7%) than in hospitals (11.1%) and GPs (5.5%). 35.8% of ACP documentation was completed by a health professional (9.7% weighted), and 18.1% was completed by someone else (10.6% weighted). Having an ACD was positively associated with being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. Only 73% of ACDs included full name, signature, document date and witnessing. CONCLUSIONS AND CONTRIBUTION: Low ACP documentation prevalence and a lack of accessible, person-completed and quality ACDs represent an important ACP implementation issue. Low prevalence is complicated by poor document quality and a higher prevalence of documents being completed by someone other than the person.

Organisational and advance care planning program characteristics associated with advance care directive completion: a prospective multicentre cross-sectional audit among health and residential aged care services caring for older Australians.

BACKGROUND: Advance care planning (ACP) and advance care directive (ACD) completion improve outcomes for patients, family, clinicians and the healthcare system. However, uptake remains low. Despite increasing literature regarding organisational-level ACP characteristics leading to success, there is a lack of data measuring the impact of these factors on ACD prevalence. METHODS: A prospective multi-centre, cross-sectional audit of health records among older Australians accessing general practices (GP), hospitals and residential aged care facilities (RACF) was undertaken to describe organisational and ACP-program characteristics across services, document ACD prevalence, and assess organisation-level predictors of ACD prevalence. Organisational-level data included general and ACP-program characteristics. Patient/resident data included demographics and presence of ACDs. RESULTS: One hundred organisations (GP = 15, hospitals = 27, RACFs = 58) participated, contributing data from 4187 patient/resident health records. Median prevalence of ACDs across organisations was 19.4%, (range = 0-100%). In adjusted models, organisational sector type was the strongest predictor of ACD prevalence, with higher rates in RACFs (unadjusted 28.7%, adjusted 20.6%) than hospitals (unadjusted 6.4%, adjusted 5.8%) or GPs (unadjusted 2.5%, adjusted 6.6%). RACFs in regional and rural/remote areas had higher prevalence than metropolitan organisations. Organisations supported by government funding and those that were Not For Profit had higher prevalence than those that were privately funded, and organisations with an ACP program that had been implemented at least 3 years before data collection had higher prevalence than those with either no program or a more recent program. CONCLUSIONS: The median ACD prevalence was low, with substantial variation across organisations. Sector type was the strongest predictor, being highest in RACFs. Low prevalence rates, overall and in particular sectors, have implications for improvements. Further research into organisational factors associated with ACP/ACD completion is required.

Differences in advance care planning among nursing home care staff.

BACKGROUND: A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. OBJECTIVES: To examine to what extent engagement in advance care planning practices (e.g. conversations, advance directives), knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. DESIGN: Survey study. PARTICIPANTS/SETTING: The study involved a purposive sample of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff (e.g. social workers, physical therapists) completed a survey. ETHICAL CONSIDERATIONS: The study was approved by the University Hospital of Brussels (B.U.N. 143201834759), as part of a cluster randomized controlled trial (clinicaltrials.gov NCT03521206). RESULTS: One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated (67% response rate). After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations (odds ratio 4; 95% confidence interval 1.73-9.82; p < 0.001) and documented advance care planning (odds ratio 2.67; 95% confidence interval 1.29-5.56; p < 0.001); differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses (estimated mean difference 0.13 (score range 0-1); 95% confidence interval 0.08-0.17; p < 0.001) and allied staff (estimated mean difference 0.07; 95% confidence interval 0.03-0.12; p < 0.001) scoring higher than care assistants. We found no significant differences regarding self-efficacy. DISCUSSION: While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. CONCLUSIONS: Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage.

Advance care planning in Australia during the COVID-19 outbreak: now more important than ever.

The novel Coronavirus disease 2019 (COVID-19) outbreak has led to rapid and profound changes in healthcare system delivery and society more broadly. Older adults, and those living with chronic or life-limiting conditions, are at increased risk of experiencing severe or critical symptoms associated with COVID-19 infection and are more likely to die. They may also experience non-COVID-19 related deterioration in their health status during this period. Advance care planning (ACP) is critical for this cohort, yet there is no coordinated strategy for increasing the low rates of ACP uptake in these groups, or more broadly. This paper outlines a number of key reasons why ACP is an urgent priority, and should form a part of the health system's COVID-19 response strategy. These include reducing the need for rationing, planning for surges in healthcare demand, respecting human rights, enabling proactive care coordination and leveraging societal change. We conclude with key recommendations for policy and practice in the system-wide implementation of ACP, to enable a more ethical, coordinated and person-centred response in the COVID-19 context.

Case-control study of end-of-life treatment preferences and costs following advance care planning for adults with end-stage kidney disease.

AIM: The aim of the present study was to examine the efficacy of advance care planning (ACP) to improve the likelihood that end-stage kidney disease (ESKD) patient's preferences will be known and adhered to at end-of-life. METHODS: A case-control study of a nurse-led ACP programme in adults with ESKD from a major tertiary hospital. The primary outcome was the proportion of patients whose preferences were known (by substitute decision maker and/or clinicians) and adhered to by their treating doctors. Secondary measures were health system resource use and costs ($AUD) for a nurse-led ACP intervention in the last 12-months of life. RESULTS: In total, 57 cases (38 men, mean age 73.8 years) and 57 historical controls (38 men, mean age 74.0 years) were included. Cases (38/57, 67%) were significantly more likely than controls (15/57, 26%) to have their preferences known and adhered to by their treating doctor at end-of-life (P < 0.001). Cases (33/40, 83%) were also significantly more likely to withdraw from dialysis in accordance with their preferences than controls (11/33, 33%) (P < 0.001). For cases, the average hospital costs in the last 12 months of life was AUD $99 077 (SD = $71 002) per patient. The total cost of the ACP programme in 2010/2011 was AUD $26 821. CONCLUSION: Advance care planning was associated with improvements in end-of-life care preferences being known and adhered to for people with ESKD.

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 the knowledge, attitudes and needs of advance care planning in older Chinese Australians.

AIMS AND OBJECTIVES: To identify factors that influence the engagement of Chinese Australians with advance care planning. BACKGROUND: Despite the benefits of advance care planning, there is a low prevalence of advance care planning in the Chinese Australian community. Reasons for this are often cited as cultural considerations and taboos surrounding future medical planning and death; however, other logistical factors may also be important. DESIGN: This qualitative study used a thematic analysis grounded theory approach to explore facilitators and barriers to engagement in advance care planning. METHODS: Semistructured interviews were conducted in-language (Mandarin or Cantonese) exploring the views of a purposive sample of 30 community-dwelling older Chinese Australians within Victoria, Australia. RESULTS: Three key themes were identified: knowledge of, attitudes towards and needs for undertaking advance care planning amongst the Chinese Australians. There was a low awareness of advance care planning amongst the participants and some confusion regarding the concept. Most participants reported positive attitudes towards advance care planning but acknowledged that others may be uncomfortable discussing death-related topics. Participants would want to know the true status of their health and plan ahead in consultation with family members to reduce the burden on the family and suffering for themselves. Language was identified as the largest barrier to overcome to increase advance care planning awareness. In-language materials and key support networks including GPs, family and Chinese community groups were identified as ideal forums for the promotion of advance care planning. CONCLUSIONS: The participants of this study were open to conversations regarding future medical planning and end-of-life care, suggesting the low uptake of advance care planning amongst Chinese Australians is not culturally motivated but may be due a lack of knowledge relating to advance care planning. RELEVANCE TO CLINICAL PRACTICE: The results highlight the need to provide access to appropriate in-language advance care planning resources and promotion of advance care planning across the Chinese community.

Advance care planning in chronic kidney disease: A survey of current practice in Australia.

AIM: Advance care planning (ACP) in nephrology is widely advocated but not always implemented. The aims of this study were to describe current ACP practice and identify barriers/facilitators and perceived need for health professional education and chronic kidney disease (CKD)-specific approaches. METHODS: An anonymous cross-sectional survey was administered online. Nephrology health professionals in Australia and New Zealand were recruited via professional societies, email lists and nephrology conferences. Multiple regression explored the influence of respondents' attributes on extent of involvement in ACP and willingness to engage in future. RESULTS: A total of 375 respondents included nephrologists (23%), nurses (65%), social workers (4%) and others (8%) with 54% indicated that ACP at their workplace was performed ad hoc and 61% poorly. Perceived barriers included patient/family discomfort (84%), difficulty engaging families (83%), lack of clinician expertise (83%) and time (82%), health professional discomfort (72%), cultural/language barriers (65%), lack of private space (61%) and lack of formal policy/procedures (60%). Respondents overwhelmingly endorsed the need for more dialysis-specific ACP programs (96%) and education (95%). Whilst 85% thought ACP would be optimally performed by specially trained staff, comments emphasized that all clinicians should have a working proficiency. Respondents who were more willing to engage in future ACP tended to be non-physicians (odds ratio (OR) 4.96, 95% confidence intervals (CI) 1.74-14.07) and reported a greater need for CKD-specific ACP materials (OR 10.88, 95% CI 2.38-49.79). CONCLUSION: Advance care planning in nephrology needs support through education and CKD-specific resources. Endorsement by nephrologists is important. A multidisciplinary approach with a gradient of ACP expertise is also recommended.

Advance care planning in Australia: what does the law say?

Advance care planning (ACP) assists people to plan for their future health and personal care. ACP encourages a person to legally appoint a substitute decision maker (SDM) and to document any specific wishes regarding their future health care in an advance care directive (ACD). Formal documentation of wishes increases the chances that a person's wishes will be known and followed. However, one of the biggest impediments for doctors following the person's wishes is uncertainty surrounding the law, which is complicated and varies between the states and territories of Australia. SDM legislation varies regarding who can be appointed, how they are appointed, the powers that an SDM can be given and the decision-making principles that the SDM needs to follow. In circumstances where an SDM has not been appointed, the hierarchy for determining the default SDM for a person also varies between states. Although many states have legislated ACD forms allowing for documentation of a person's health care wishes, these forms allow for different things to be documented and have different requirements to be valid. The Australian population is mobile, with patients frequently moving between states. The status of ACP documentation created in a state other than the state in which a patient requires treatment also varies, with some states recognising interstate ACDs whereas others do not. This article outlines the legal status of ACDs, within Australian jurisdictions, including the legal validity of interstate ACDs, and argues that uniform laws and documents would assist with awareness and understanding of, and compliance with, ACDs.

Current advance care planning practice in the Australian community: an online survey of home care package case managers and service managers.

BACKGROUND: Advance care planning (ACP) is the process of planning for future healthcare that is facilitated by a trained healthcare professional, whereby a person's values, beliefs and treatment preferences are made known to guide clinical decision-making at a future time when they cannot communicate their decisions. Despite the potential benefits of ACP for community aged care clients the availability of ACP is unknown, but likely to be low. In Australia many of these clients receive services through Home Care Package (HCP) programs. This study aimed to explore current attitudes, knowledge and practice of advance care planning among HCP service managers and case managers. METHODS: An invitation to take part in a cross-sectional online survey was distributed by email to all HCP services across Australia in November 2012. Descriptive analyses were used to examine overall patterns of responses to each survey item in the full sample. RESULTS: 120 (response rate 25%) service managers and 178 (response rate 18%) case managers completed the survey. Only 34% of services had written ACP policies and procedures in place and 48% of case managers had previously completed any ACP training. In addition, although most case managers (70%) had initiated an ACP discussion in the past 12 months and viewed ACP as part of their role, the majority of the conversations (80%) did not result in documentation of the client's wishes and most (85%) of the case managers who responded did not believe ACP was done well within their service. CONCLUSIONS: This survey shows low organisational ACP systems and support for case managers and a lack of a normative approach to ACP across Australian HCP services. As HCPs become more prevalent it is essential that a model of ACP is developed and evaluated in this setting, so that clients have the opportunity to discuss and document their future healthcare wishes if they choose to.

Advance care planning for adults with CKD: a systematic integrative review.

BACKGROUND: Recent clinical practice guidelines have highlighted the importance of advance care planning (ACP) for improving end-of-life care for people with chronic kidney disease (CKD). STUDY DESIGN: We conducted a systematic integrative review of the literature to inform future ACP practice and research in CKD, searching electronic databases in April 2013. Synthesis used narrative methods. SETTING & POPULATION: We focused on adults with a primary diagnosis of CKD in any setting. SELECTION CRITERIA FOR STUDIES: We included studies of any design, quantitative or qualitative. INTERVENTIONS: ACP was defined as any formal means taken to ensure that health professionals and family members are aware of patients' wishes for care in the event they become too unwell to speak for themselves. OUTCOMES: Measures of all kinds were considered of interest. RESULTS: 55 articles met criteria reporting on 51 discrete samples. All patient samples included people with CKD stage 5; 2 also included patients with stage 4. Seven interventions were tested; all were narrowly focused and none was evaluated by comparing wishes for end-of-life care with care received. One intervention demonstrated effects on patient and family outcomes in the form of improved well-being and anxiety following sessions with a peer mentor. Insights from qualitative studies that have not been used to inform interventions include the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis therapy separately from "aggressive" life-sustaining treatments (eg, ventilation). LIMITATIONS: Although quantitative and qualitative findings were integrated according to best practice, methods for this are in their infancy. CONCLUSIONS: Research on ACP in patients with CKD is limited, especially intervention studies. Interventions in CKD should attend to barriers and facilitators at the levels of patient, caregiver, health professional, and system. Intervention studies should measure impact on compliance with patient wishes for end-of-life care.

Inpatient and long-term outcomes of individuals admitted for weaning from mechanical ventilation at a specialized ventilation weaning unit.

BACKGROUND: Weaning from invasive mechanical ventilation (IMV) in specialized weaning units has been demonstrated to be safe and cost-effective. Success rates and outcomes vary widely, probably relating to patient factors and unit expertise. METHODS: An audit was undertaken of patients admitted for weaning from IMV at the Austin Hospital Ventilation Weaning Unit (VWU) between March 2002 and January 2008. Weaning success, complications and both in-hospital and long-term mortality were examined and regression analysis was undertaken to examine factors related to these outcomes. RESULTS: Seventy-eight patients were admitted to the VWU after a median of 27 days of IMV at their referring centre. Weaning success rate (ventilator free or nocturnal non-invasive ventilation only) was 78.2% (n = 61). Inpatient mortality was 10.2% (n = 8) and serious complications were infrequent. Progressive neuromuscular disease (odds ratio 0.10) and sepsis during admission to the VWU (odds ratio 0.09) were predictive of weaning failure at discharge. Overall survival at 12 months following discharge from the VWU was 66.7% (n = 52) with most survivors residing in the community. Increasing age (hazard ratio 1.93), referral from rural or outer metropolitan centres (hazard ratio 3.57 and 2.37 respectively) and a diagnosis of chronic obstructive pulmonary disease were associated with increased long-term mortality. CONCLUSION: High rates of weaning success with infrequent complications and low mortality were achieved in this specialized non-intensive care unit-based weaning unit. The VWU may provide a useful template for the development of similar units elsewhere.

Patients' with chronic kidney disease and their relatives' perspectives on advance care planning: A meta-ethnography.

INTRODUCTION: Advance care planning is a process that supports adults of any age and stage of illness in understanding and sharing their values, life goals, and preferences regarding medical care. Chronic kidney disease is a progressive and lifelong disease. Close relatives often represent patients' most important support. Advance care planning is recommended to be a continuous part of a person's ongoing treatment and is not solely related to end-of-life care. However, no studies have focused on advanced care planning for patients with chronic kidney disease earlier than the onset of a terminal illness. AIM: The aim is to describe experiences of and perspectives on advance care planning among patients with chronic kidney disease and their close relatives. METHODS: We conducted a meta-ethnography of studies that used individual, dyad, and focus group interviews. We searched five electronic databases: PubMed, Cinahl, Embase, PsycINFO, and Scopus and reference lists of relevant articles. RESULTS: Seven articles were included. Participants had a need for advance care planning to make shared decisions about treatment and everyday life. The responsibility for initiating advance care planning lay with the healthcare professionals. Differences between advance care planning goals among patients, relatives, and healthcare professionals complicated the advance care planning process. A focus on day-to-day care at the expense of focusing on advance care planning gave an impression of a lack of competencies and interest. For some patients, the involvement of relatives was of significant value; however, it could be associated with burden and pressure. CONCLUSION: Patients with chronic kidney disease and their families have a need for early advance care planning before dialysis or transplantation is initiated, so as to facilitate shared decision-making related to treatment options and everyday life. It is important that patients, their relatives, and healthcare professionals share the same advance care planning goals, to get sufficient discussions and thus, achieve clarity about prognosis, medical care, and the illness trajectory.

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.

Systematic review and content analysis of Australian health care substitute decision making online resources.

Objective Substitute decision makers (SDMs) can be required to make difficult health care decisions on behalf of individuals lacking decision-making capacity. Online resources may be helpful in preparing and supporting SDMs. This study systematically explored the frequency, content and usability of Australian online resources containing health care substitute decision-making content written for consumers. Methods In April 2019, Google searches were conducted to identify online resources containing health care substitute decision-making content for consumers. Analysis comprised mapping resource characteristics, including target audience (individual-specific, SDM-specific, mixed) and thematic analysis of content. Usability was assessed using the Patient Education Materials Assessment Tool (PEMAT). Results Of the 61 resources identified, the most frequent were webpages (57%), individual-specific (43%) and those produced by government organisations (31%). Only 15 resources (24%) were written for SDMs. Content themes identified were: defining the scope of the SDM role (93%); recommended traits or characteristics of SDMs (80%); instructions or principles regarding standards for decision making (75%); duties of SDMs (70%); and supports (46%), rights (16%), barriers (8%) and benefits (5%) for SDMs. The median (interquartile range) PEMAT scores (out of 100) were 66 (27) for understandability and 60 (55) for actionability. Conclusions SDMs have a vital role in making decisions for people lacking decision-making capacity. Online resources are a potential source of information and support for SDMs in Australia. This study identified key gaps in availability, content and usability of existing SDM resources, highlighting the need for the further development of such resources. We suggest that future resource development include SDMs in the design and evaluation processes. What is known about the topic? An aging population and a greater need for decisions to be made on behalf of others who lack capacity means that health care substitute decision-making is occurring more frequently. Appointing one or more SDMs may occur as part of the advance care planning process. However, being a healthcare SDM can be difficult and stressful. People frequently use the Internet to search for health-related information. What does this paper add? This paper systematically examined the frequency, content and usability of existing Australian online resources with substitute decision-making content written for a consumer audience in English, and identified key gaps in online resources available to support SDMs. What are the implications for practitioners? Although there is a need for resources written for SDMs, authors of online resources need to pay careful attention to the purpose, content and usability of their resource. Future resource development should include input from SDMs and involve them in evaluation to assess whether the resources meet target audience needs.

Public knowledge, preferences and experiences about medical substitute decision-making: a national cross-sectional survey.

OBJECTIVE: To describe the Australian adult public's knowledge and experiences regarding substitute decision-making for medical decisions and their preferences for obtaining information about the substitute decision-maker (SDM) role. METHODS: This is a national cross-sectional online survey of the Australian adult public. The survey examined participants' advance care planning (ACP) awareness and experience, SDM experiences and preferences for obtaining more information about SDM, and participant knowledge about SDM. RESULTS: Of 1586 people who opened the survey, 1120 (70.6%) were included in the final sample. 13% (n=142) of participants indicated they had acted as an SDM. A median score of two correct responses out of five showed low to moderate knowledge about the SDM role among all participants, with only 33% reporting awareness of SDM laws existing in Australia. While most (59%) participants ranked a health professional as their preferred source of obtaining information about supporting SDMs, few participants who had been an SDM (n=64, 45%) reported obtaining any support in making medical decisions. The median SDM knowledge scores for people who had discussed ACP (3.0 vs 2.0, U=1 45 222, z=6.910, p<0.001), documented their ACP preferences (3.0 vs 2.0, U=71 984, z=4.087, p<0.001) or acted in the SDM role (3.0 vs 2.0, U=56 353, z=-3.694, p<0.001) were significantly higher compared with those who had not. CONCLUSIONS: The Australian public may have low to moderate knowledge about the SDM role and access only minimal support when making challenging medical decisions.