CONTEXT: Individuals with chronic obstructive pulmonary disease (COPD) typically experience a gradual worsening of the illness in the years prior to death. Due to difficulties in predicting the disease trajectory or the timing of acute exacerbations, advance care planning (ACP) may be of particular importance for individuals with COPD.
OBJECTIVES: To review and summarise the available literature on current practices around ACP in COPD.
METHODS: A scoping review of the literature was conducted following the Arksey and O'Malley framework . Original research studies of any design were included.
RESULTS: Twenty-eight studies were included. Across studies, there was agreement that ACP should be incorporated into routine COPD management. There was evidence that this does not occur in everyday practice, with conversations tending to focus on day-to-day symptom management. Barriers included prognosis uncertainty, insufficient time and training, and a lack of protocols for who is responsible for initiating ACP. Facilitators included the use of transition points for identifying the appropriate time to initiate ACP, and an increased focus on ACP in professional education. The occurrence of repeated episodes of acute care was identified as a key transition point for identifying the palliative stage of COPD and an appropriate time to initiate ACP.
CONCLUSION: The findings of this review confirm agreement among healthcare professionals and patients with COPD and their carers that ACP should be incorporated into routine COPD management. The use of transition points may help healthcare professionals overcome the barrier of prognosis uncertainty, and identify patients that might benefit from ACP.
Objective: The aim of this study was to identify the challenges anticipated by clinical staff in two Melbourne health services in relation to the legalisation of voluntary assisted dying in Victoria, Australia.
Methods: A qualitative approach was used to investigate perceived challenges for clinicians. Data were collected after the law had passed but before the start date for voluntary assisted dying in Victoria. This work is part of a larger mixed-methods anonymous online survey about Victorian clinicians' views on voluntary assisted dying. Five open-ended questions were included in order to gather text data from a large number of clinicians in diverse roles. Participants included medical, nursing and allied health staff from two services, one a metropolitan tertiary referral health service (Service 1) and the other a major metropolitan health service (Service 2). The data were analysed thematically using qualitative description.
Results: In all, 1086 staff provided responses to one or more qualitative questions: 774 from Service 1 and 312 from Service 2. Clinicians anticipated a range of challenges, which included burdens for staff, such as emotional toll, workload and increased conflict with colleagues, patients and families. Challenges regarding organisational culture, the logistics of delivering voluntary assisted dying under the specific Victorian law and how voluntary assisted dying would fit within the hospital's overall work were also raised.
Conclusions: The legalisation of voluntary assisted dying is anticipated to create a range of challenges for all types of clinicians in the hospital setting. Clinicians identified challenges both at the individual and system levels.What is known about the topic? Voluntary assisted dying became legal in Victoria on 19 June 2019 under the Voluntary Assisted Dying Act 2017. However there has been little Victorian data to inform implementation.What does this paper add? Victorian hospital clinicians anticipate challenges at the individual and system levels, and across all clinical disciplines. These challenges include increased conflict, emotional burden and workload. Clinicians report concerns about organisational culture, the logistics of delivering voluntary assisted dying under the specific Victorian law and effects on hospitals' overall work. What are the implications for practitioners? Careful attention to the breadth of staff affected, alongside appropriate resourcing, will be needed to support clinicians in the context of this legislative change.
CONTEXT: Volunteer involvement may support organizations to initiate and operationalize complex interventions such as advance care planning (ACP).
OBJECTIVES: A scoping review was conducted to map existing research on volunteer involvement in ACP, and to identify gaps in current knowledge base.
METHODS: We Followed the PRISMA extension for Scoping Reviews (PRISMA-ScR) guidelines. The review included studies of any design reporting original research. ACP was defined as any intervention aimed at supporting people to consider and communicate their current and future health treatment goals in the context of their own preferences and values. Studies were included if they reported data relating to volunteers at any stage in the delivery of ACP.
RESULTS: Of 11 studies identified, 9 different ACP models (initiatives to improve uptake of ACP) were described. The majority of the models involved volunteers facilitating ACP conversations or advance care directive completion (n=6); and three focused on ACP education, training and support. However, a framework for volunteer involvement in ACP was not described; the studies often provided limited detail of the scope of volunteers' roles in ACP and in three of the models, volunteers delivered ACP initiatives in addition to undertaking other tasks, in their primary role as a Volunteer Navigator. Increased frequency of ACP conversation or documentation was most commonly used to evaluate the effectiveness of the studies, with most showing a trend toward improvement.
CONCLUSIONS: Current literature on volunteer involvement in ACP is lacking a systematic approach to implementation. We suggest future research focus on person-centered outcomes related to ACP to evaluate the effectiveness of volunteer involvement.
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.