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Abstract Background Advance Care Planning (ACP) by Registered Nurses (RNs) has been emerging. However, there is limited understanding about what RNs experience as they incorporate ACP into their practice. This study aimed to elicit the experiences of ACP RNs with the implementation of a normalised ACP (NACP) service in hospital and community care settings. Methods A qualitative descriptive study invited four ACP RNs who delivered a nurse-led NACP for a 6 months duration at two hospital and two community health care settings in New South Wales (NSW), Australia. The experiences of the ACP RNs were captured through a semi-structured interview and weekly debriefing meetings. The interview recordings were transcribed verbatim and the minutes of weekly debriefing meetings were utilized. Data were analysed by two independent researchers using thematic analysis with the Normalisation Process Theory (NPT) as a methodological framework. Findings The ACP RNs were females with a mean age of 43 years old. Their nursing experiences ranged 2 to 25 years but they had minimal experiences with ACP and had not attended any education about ACP previously. The following four themes were identified in the experiences of the ACP RNs; 1) Embracing NACP service; 2) Enablers and barriers related to patients and health professionals; 3) Enablers and barriers related to ACP RNs; and 4) What it means to be an ACP RN. Conclusion The introduction of a NACP service into existing clinical systems is complex. The study demonstrated the capacity of RNs to engage in ACP processes, and their willingness to deliver an NACP service with a raft of locally specific enablers and barriers. Trial registration The study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246 ). The URL of the trial registry record

Abstract Background Advance Care Planning (ACP) has emerged to improve end-of-life processes and experiences. However, the available evidence presents the gloomy picture of increasing number of older people living with chronic diseases and the mismatch between their preferences for and the actual place of death. The study aimed to investigate the efficacy of normalisation of an Advance Care Planning (NACP) service delivered by specially trained Registered Nurses (RNs) in hospital and community settings. Methods A quasi-experimental study was conducted involving 16 sites (eight hospital and eight community sites) in Australia. Patients who were aged ≥18 years, who had at least one of nine chronic conditions, and who did not have an Advance Care Directive (ACD) were offered the NACP service. ACP was normalised as part of routine service on admission. The intervention, NACP, was a series of facilitated conversations about the components of ACP. The primary outcomes which included the completion of ACDs, and/or appointment of an Enduring Guardian (EG), were assessed in both intervention and control sites at pre and post intervention stages. Numbers of patients who completed an ACD or appointed an EG were described by count (percentage). ACD completion was compared between intervention and control sites using a logistic mixed effects regression model. The model includes fixed effects for treatment group, period, and their interaction, as well as random site level intercepts. Secondary model included potentially confounding variables as covariates, including age, sex and chronic diseases. Results The prevalence of legally binding ACDs in intervention sites has increased from five to 85 (from 0.85% in pre to 17.6% in post), whereas it has slightly decreased from five to 2 (from 1.2% in pre and to 0.49% in post) in control sites (the difference in these changes being statistically significant p

Abstract Background A growing body of international literature concurs that comprehensive and complex Advance Care Planning (ACP) programs involving specially qualified or trained healthcare professionals are effective in increasing documentation of Advance Care Directives (ACDs), improving compliance with patients’ wishes and satisfaction with care, and quality of care for patients and their families. Economic analyses of ACDs and ACP have been more sporadic and inconclusive. This study aimed to contribute to the evidence on resource use associated with implementation of ACP and to inform key decision-makers of the resource implications through the conduct of a cost-consequence analysis of the Normalised Advance Care Planning (NACP) trial. Methods The outcomes for the economic evaluation included the number of completed “legally binding” ACDs and the number of completed Conversation Cards (CC). The cost analysis assessed the incremental difference in resource utilisation between Usual Practice and the Intervention. Costs have been categorised into: 1) Contract staff costs; 2) Costs associated with the development of the intervention; 3) Implementation costs; 4) Intervention (delivery) costs; and 5) Research costs. Results The cost incurred for each completed ACD was A$13,980 in the hospital setting and A$1248 in the community setting. The cost incurred for each completed Conversation Card was A$7528 in the hospital setting and A$910 in the community setting. Conclusions The cost-consequence analysis does not support generalisation of the specified intervention within the hospital setting. The trial realised an estimated incremental cost per completed ACD of $1248, within the community setting. This estimate provides an additional benchmark against which decision-makers can assess the value of either 1) this approach towards the realisation of additional completed ACDs; and/or 2) the value of ACP and ACDs more broadly, when this estimate is positioned within the potential health outcomes and downstream health service implications that may arise for people with or without a completed ACD. Trial registration The study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246 ). The URL of the trial registry record.

Abstract Background Advance Care Planning (ACP) enables healthcare professionals to embrace the important process where patients think about their values in life and goals for health care, and discuss their future health care preferences with family members for a time when they are not able to make health care decisions. Despite the promotion of ACP last two decades, and well-known benefits of ACP and a written Advance Care Directive (ACD), they are still underutilised in Australia and across the world. Previous studies have provided some insights, however, an uptake of ACP and prevalence of ACDs in community settings is rarely reported. Methods The aim of this study was to determine the uptake of ACP and prevalence of ACDs among people with chronic diseases in hospital and community settings. A retrospective medical record audit of eligible patients looking for evidence of ACP was conducted in 16 research sites in eight hospital and eight community care settings. Participants included those who were admitted to one of the research sites, and who were aged 18 years and over with at least one of nine nominated chronic diseases. The primary outcome measures included the number of patients with evidence of ACP through the following practices: completion of an ACD, appointment of an Enduring Guardian (EG), or completion of a resuscitation plan. Results The overall prevalence of ACD was 2.8% (n = 28) out of 1006 audited records, and only 10 (1%) of them were legally binding. The number of EGs appointed was 39 (3.9%) across the sites. A total of 151 (15.4%) resuscitation plans were found across the eight hospital sites. 95% (n = 144) of the resuscitation plans indicated ‘Not-for-resuscitation’. Conclusions The uptake of ACP is very low. Current medical recording system reveals the challenges in ACP lie in the process of storage, access and execution of the ACDs. Given that having an ACD or Enduring Guardian in place is only useful if the treating physician knows how and where to access the information, it has implications for policy, information system, and healthcare professionals’ education. Trial registration The study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246 ). The URL of the trial registry record http://www.anzctr.org.au/trial/MyTrial.aspx

Abstract Background Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia. Methods The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP. Discussion This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings. Trial registration This project has been approved by the Hunter New England Human Research Ethics Committee (Approval No. 17/12/13/4.16). It has also been retrospectively registered on 3 October 2018 with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246). This study will operate in accordance with the National Health and Medical Research Council’s National Statement on Ethical Conduct in Human Research (2007) and the CPMP/ICH Note for Guidance on Good Clinical Practice.