Validating care and treatment scenarios for measuring decisional conflict regarding future care preferences among older adults.

OBJECTIVE: Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision-making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life-sustaining treatments and care utilisation to inform their broader use in ACP studies. METHODS: Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. RESULTS: Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's = .31-.37, p < .001), and ACP engagement (r's = -.41 to -.37, p < .001) indicated convergent validity. CONCLUSION: A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. PATIENT OR PUBLIC CONTRIBUTION: The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life-limiting conditions and five current or former care partners.

Feasibility and acceptability of facilitated advance care planning in outpatient clinics: A qualitative study of health-care professionals experience.

OBJECTIVE: This study sought to determine the feasibility and acceptability of a facilitated advance care planning (ACP) intervention implemented in outpatient clinics, as perceived by health-care professionals (HCPs). METHODS: Data from seven focus groups (n = 27) and nine semi-structured interviews with HCPs recruited as part of a pragmatic, randomised controlled trial (RCT) were analysed using qualitative descriptive methodology. Components of the intervention included HCP education and training, tools to assist HCPs with patient selection, hardcopy information, and ACP documentation, and specialised nurse-facilitators to support HCPs to complete ACP conversations and documentation with patients and caregivers. RESULTS: Health-care professionals working in tertiary outpatient clinics perceived the facilitated ACP intervention as feasible and acceptable. Health-care professionals reported a high level of satisfaction with key elements of the intervention, including the specialised education and training, screening and assessment procedures and ongoing support from the nurse-facilitators. Health-care professionals reported this training and support increased their confidence and ACP knowledge, leading to more frequent ACP discussions with patients and their families. Health-care professionals noted their ability to conduct ACP screening and assessment in clinic was impeded by large clinical caseloads and patient-related factors (e.g., dementia diagnoses, and emotional distress). Additional barriers to ACP implementation identified by HCPs included poor collaboration, constrained time and clinical space, undefined roles and standardised recording procedures for HCPs. CONCLUSIONS: Facilitated ACP intervention in outpatient clinics is perceived by HCPs as feasible and acceptable. Addressing barriers and tailoring implementation strategies may improve the delivery of ACP as part of tertiary outpatient care.

Feasibility and Acceptability of Facilitated Advance Care Planning in Outpatient Clinics: A Qualitative Study of Patient and Caregivers Experiences.

Guidelines recommend advance care planning (ACP) for people with advanced illness; however, evidence supporting ACP as a component of outpatient care is lacking. We sought to establish the feasibility and acceptability of a facilitated ACP intervention for people attending tertiary outpatient clinics. Data from 20 semi-structured interviews with patient (M = 79.3 ± 7.7, 60% male) and caregiver (M = 68.1 ± 11.0, 60% female) participants recruited as part of a pragmatic, randomized controlled trial (RCT) were analyzed using qualitative descriptive methodology. Patients were randomized to intervention (e.g., facilitated support) or control (e.g., standard care). Intervention patients expressed high satisfaction, reporting the facilitated ACP session was clear, straightforward, and suited to their needs. Intervention caregivers did not report any significant concerns with the facilitated ACP process. Control participants reported greater difficulty completing ACP compared to intervention participants. Embedding facilitated ACP into tertiary outpatient care appears feasible and acceptable for people with advanced illnesses.

Patient experiences of nurse-facilitated advance care planning in a general practice setting: a qualitative study.

BACKGROUND: Advance care planning (ACP) can offer benefits to patients and their families, especially when delivered in outpatient settings, but uptake remains low. Common barriers for health professionals include a perceived lack of time and adequate training, experience, and confidence in conducting ACP. Patient-reported barriers include a lack of awareness of ACP or discomfort initiating or engaging in discussions about end-of-life. METHODS: We aimed to explore patients' perspectives of an ACP intervention designed to address common barriers to uptake in the general practice setting. We provided training and support to doctors and general practice nurses (GPNs) to initiate and lead ACP discussions at their respective practices (2014 to 2015). Following the intervention, we conducted interviews with patients to explore their experience of engaging in ACP in the general practice setting. Thematic analysis was used to inductively code transcripts and identify key themes from semi-structured interviews with patients. RESULTS: Six major themes relating to patient experiences of GPN-facilitated ACP were identified: working through ideas, therapeutic relationship with nurses, significance of making wishes known, protecting family from burden, autonomy in decision-making, and challenges of family communication. The patients valued the opportunity to speak about issues that are important to them with the GPN who they found to be compassionate and caring. The patients felt that ACP would lead to significant benefits not only to themselves but also for their family. Despite encouragement to involve other family members, most patients attended the ACP discussions alone or as a couple; many did not see the relevance of their family being involved in the discussions. Some patients felt uncomfortable or reluctant in communicating the results of their discussion with their family. CONCLUSIONS: With adequate training and support, GPNs are able to initiate and facilitate ACP conversations with patients. Their involvement in ACP can have significant benefits for patients. Psychosocial and relational elements of care are critical to patient satisfaction. Our findings show that some patients may feel uncomfortable or reluctant to communicate the results of their ACP discussions with their family. A future larger study is required to verify the findings of this pilot study.

Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: a study protocol for a randomised controlled trial.

INTRODUCTION: It is unclear whether advance care planning (ACP) undertaken with patients living in the community can improve patient care and avoid unwanted interventions and hospital admissions. We have designed a randomised controlled trial (RCT) to examine if ACP undertaken with patients with advanced illnesses attending hospital outpatient clinics can reduce unplanned hospital admissions and improve patient and caregiver well-being. METHODS AND ANALYSIS: Pragmatic RCT involving patients from subspecialty outpatient clinics at five clinical sites in Sydney, Australia. Participants will be ≥18 years screened as potentially having palliative care needs and at risk of dying in 6-12 months. The patients will be randomised to intervention or control group. Intervention group will undertake ACP discussions facilitated by a trained health professional. The control group will receive written information on ACP, representing the current standard of care. The primary outcome is the number of unplanned hospital admissions at the 6-month follow-up. Secondary outcomes include: (i) patient's health-related quality-of-life and quality of chronic disease care; (ii) caregiver's health-related quality-of-life and caregiver burden and (iii) other health outcomes including ambulance usage, emergency department presentations, hospital admissions, resuscitation attempts, intensive care unit admissions, deaths, documentation of patient wishes in patient records and audit of ACP discussions and documents. The staff's self-reported attitudes and knowledge of ACP will also be measured. The data will be collected using self-report questionnaires, hospital records audit, audit of ACP documentation and data linkage analysis. Semistructured interviews and focus group discussions with patients, caregivers and healthcare professionals will explore the acceptability and feasibility of the intervention. ETHICS AND DISSEMINATION: Approved by South-East Sydney Local Health District Human Research Ethics Committee and NSW Population and Health Services Research Ethics Committee. Results will be disseminated via conference presentations, journal publications, seminars and invited talks. TRIAL REGISTRATION NUMBER: ACTRN12617000280303.

Advance care planning and hospital in the nursing home.

BACKGROUND: the number of nursing home residents (NHRs) in hospital is increasing although hospital admission may be deleterious to their health. OBJECTIVE: to evaluate a system of educating residents, their families, staff and general practitioners about outcomes of dementia, advance care planning (ACP) and hospital in the home. METHODS: we employed one clinical nurse consultant, who utilised the 'Let Me Decide' Advance Care Directive. The intervention area consisted of two hospitals and the 21 nursing homes (NHs) around them compared with another, geographically separate, hospital and the 13 homes around it. We conducted a controlled evaluation monitoring emergency admissions to hospital. RESULTS: emergency calls to the ambulance service from intervention NHs decreased (intervention versus control; -1 versus +21%; P = 0.0019). The risk of a resident being in an intervention hospital bed for a day compared with in a control hospital bed, per NH bed, fell by a quarter from being initially similar [Relative Risk (RR) = 1.01; 95% confidence interval (CI) 0.98-1.04; P = 0.442] to being lower (RR = 0.74; 95% CI 0.72-0.77; P<0.0001). There was no significant change in mortality in the intervention homes, but in the control homes mortality rose in the third year to be 11.2 per 100 beds higher than in the intervention area (P<0.05). CONCLUSION: ACP and hospital in the home can result in decreased hospital admission and mortality of NHRs.