Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients

Objectives To describe communication regarding cancer patient’s end-of-life (EoL) wishes by physicians and family caregivers. Methods An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was “clearly the best for the patient” or that it was “not necessary to discuss treatment with the patient”. Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). Conclusions There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.

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.

Knowledge of End-of-life Wishes by Physicians and Caregivers in Cancer Patients

Objectives: To describe communication regarding cancer patient’s end-of-life (EoL) wishes by physicians and caregivers.Methods: An online questionnaire and telephone-based surveys were performed with physicians and caregivers respectively in three teaching hospitals in Colombia who had been involved in the EoL care of cancer patients. Results: For 138 deceased patients we obtained responses from physicians and caregivers. In 32% physicians reported they spoke to the caregiver and in 17% with the patient regarding EoL decisions. In most cases with absence of a conversation, physicians indicated the treatment option was “clearly the best for the patient” or that it was “not necessary to discuss treatment with the patient”.Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and caregivers were unaware if the patient had any advance care directive (ACD) in 65% and 51% of cases, respectively, with a very low absolute agreement (34%).Conclusion: There is a lack of open conversations regarding EoL in patients with advanced cancer with their physicians and caregivers in Colombia. Communication strategies are urgently needed.

Prevalence, perceived barriers and sociodemographic correlates of advance care planning in a sample of outpatients

This study aimed to examine the prevalence and perceived barriers to uptake of advance care planning (ACP), including appointment of an enduring guardian (EG) and completion of an advance care directive (ACD) among Australian adults attending hospital outpatient clinics. Sociodemographic correlates of not completing ACP were also assessed. A cross-sectional survey exploring the uptake of ACP was conducted with outpatients and their accompanying persons aged >18 years (n=191) at one regional hospital in New South Wales, Australia. Rates of completion of an ACD and appointment of an EG were 20% (n=37) and 35% (n=67) respectively. The most common reason for non-completion of an ACD and not appointing an EG was: ‘didn’t think I needed this’. Younger age was associated with not having appointed an EG (OR 3.8, 95% CI 1.2–12.1, P=0.02). No sociodemographic characteristics were significantly associated with non-completion of ACDs. Uptake of ACP is suboptimal among outpatients. Community-based healthcare providers are well positioned to promote ACP with outpatients.

Narrative medicine: A useful approach for difficult conversations.

6 Background: Narrative medicine (NM) is acknowledged as an effective approach for valuing patient and provider experiences. The NM approach requires developing narrative competence to “recognize, absorb, interpret, and honor” the stories of self and other (Charon, 2010). Given the difficulties providers face engaging in end-of-life (EOL) and advance care planning (ACP) conversations, this study reports the results of a NM workshop to 1) develop skills in attending and responding to the stories of others as part of ACP conversations and 2) reflect on their own stories of loss in relation to their professional practice. Methods: 80 health care professionals participated in a workshop on NM principles for end-of-life care and completed both pre- and post-workshop surveys. Workshop activities included a close reading on a professional’s story of personal loss and a reflective writing exercise sharing one’s own personal story of loss. Small groups debriefed after each exercise. 2 participants were current students and were dropped from analysis, for a final analytic sample of 78. Participants completed surveys at baseline and at the conclusion of the workshop. Surveys included questions on participant demographics, confidence for EOL conversations, and the ACP Self Efficacy scale. Descriptive statistics were calculated for sample demographics and post-workshop evaluation questions. A paired sample t-test was used to compare ACP Self Efficacy scores pre- and post-workshop. Confidence for EOL conversations was compared pre- and post-workshop using Kendall’s tau-b. Results: The mean age of the sample was 46.6 years (SD 13.1), 94% were female, and 82% were White. Social workers represented 84.6% of the sample. 53% of the sample reported having some type of advance care directive for themselves. Self-efficacy for engaging in ACP conversations increased from pre- to post-workshop (p < 0.0001) and there was a statistically significant improvement in confidence discussing death and dying from pre- to post-workshop (p = 0.004). Conclusions: NM competencies improve self-efficacy and confidence for engaging in ACP and EOL conversations. Providers find the NM approach to be a useful framework for engaging in difficult conversations about end-of-life.

132 A Survey of Non-consultant Hospital Doctors’ Knowledge and Understanding of the Legal Status of Advance Care Directives in Ireland

Background The legal status of advance care directives (ACDs) in Irish law, as they pertain to current clinical practice, is a relatively new topic to healthcare staff. This project aimed to assess current understanding in non-consultant hospital doctors (NCHDs). Methods An online survey was conducted with NCHDs across a range of disciplines to ascertain current knowledge of the legal parameters of ACDs. Descriptive analysis of data was conducted in Excel. Results The survey was completed by 183 NCHDs. Of respondents 93.99% (n=172) were familiar with the term advance care directive and 41.53% (n=76) had encountered one in clinical practice. Their current legal status in Ireland was not known to 58.47% (n=107). That to be considered legally binding an ACD must be in writing was understood by 63.39%, but 58.47% (n=107) were unsure if a solicitor is required to draft one. Refusal of medical treatment as an application for ACDs was appreciated by 79.78% (n=146), however 38.89% (n=73) erroneously believed medical intervention could be requested in an ACD, with a further 30.6% (n=56) unsure. Current guidance sets out that only specific situations may be contained within an ACD, however 77.6% (n=142) of respondents believed a general stipulation could be documented, 25.14% (n=46) did not know if cognitive function affected the legality of an ACD, 95.08% (n=174) of respondents would attend formal training on ACDs if provided by their place of work. Conclusion Despite being enshrined in current legislation the legal status of advance care directives, their definition and criteria to be considered legally binding are very poorly understood by NCHDs. Guidance and education are crucial to the future protection of both patients and doctors with regards the execution of advanced care directives as prescribed by law.

Advance care planning in 21st century Australia: a systematic review and appraisal of online advance care directive templates against national framework criteria

Objectives A drive to promote advance care planning at a population level has led to a proliferation of online advance care directive (ACD) templates but little information to guide consumer choice. The current study aimed to appraise the quality of online ACD templates promoted for use in Australia. Methods A systematic review of online Australian ACD templates was conducted in February 2014. ACD templates were identified via Google searches, and quality was independently appraised by two reviewers against criteria from the 2011 report A National Framework for Advance Care Directives. Bias either towards or against future medical treatment was assessed using criteria designed to limit subjectivity. Results Fourteen online ACD templates were included, all of which were available only in English. Templates developed by Southern Cross University best met the framework criteria. One ACD template was found to be biased against medical treatment – the Dying with Dignity Victoria Advance Healthcare Directive. Conclusions More research is needed to understand how online resources can optimally elicit and record consumers’ individual preferences for future care. Future iterations of the framework should address online availability and provide a simple rating system to inform choice and drive quality improvement. What is known about the topic? Online availability of ACD templates provides consumers with an opportunity for advance care planning outside of formal healthcare settings. While online availability has advantages, there is a risk that templates may be biased either for or against medical treatment and may not elicit directives that are appropriately informed by reflection on personal values and discussion with family and health professionals. What does this paper add? This is the first attempt at monitoring the quality and bias of online ACD templates designed for use in Australia. What are the implications for practitioners? The results of this review provide a description and quality index to assist consumers and clinicians in deciding which online ACD template to use or recommend.