Awareness Of Advance Care Planning Research Articles

Advance care planning in British Columbia: awareness and engagement (2012–2020)

ObjectivesThis study examines trends in advance care planning (ACP) awareness, engagement, attitude and experiences among the public in British Columbia (BC), Canada, from 2012 to 2020. This time period is...

Primary Care Physicians’ and Hospitalists’ Experience with Advance Care Planning with South Asian Canadian Older Adults before and during COVID-19

Abstract Few older adults discuss their end-of-life care wishes with their physician, and even fewer minorities do this. We explored physicians’ experience with advance care planning (ACP) including the barriers/facilitating factors encountered when initiating/conducting ACP discussions with South Asians (SA), one of Canada’s largest minorities. Eleven primary care physicians (PC) and 11 hospitalists with ≥ 15 per cent SA patients ≥ 55 years of age were interviewed: 10 in 2020, 12 in 2021. Thematic analysis of transcripts indicated that cultural and communication barriers, physician’s specialization, SA older adults’ lack of ACP awareness, and decision-making deference to family and physicians were barriers to ACP discussions. Although the COVID-19 pandemic impacted physicians’ practices, contrary to our hypothesis most reported no change in frequency of ACP discussions. Although ACP discussions were viewed as best conducted by PC physicians, only 55 per cent had ACP training and only 64 per cent had used ACP tools. Training in ACP facilitation, concerning ACP tool usage, and training in patient–physician communication are recommended.

Advance care planning among older adults in Belgium with Turkish backgrounds and palliative care needs: A qualitative interview study

BackgroundData on advance care planning (ACP) among migrants in Europe is lacking. Research has shown that few older migrants in the United States perform ACP due to healthcare system distrust, collectivistic values and spirituality/religion.ObjectivesTo explore the ACP knowledge and perspectives of older Turkish-origin adults in Belgium requiring palliative care.MethodGeneral practitioners (GPs) in Brussels and Antwerp recruited Turkish-origin participants aged ≥ 65 years with palliative care eligibility for this qualitative study. A GP conducted semi-structured interviews in Turkish in respondents’ homes between May 2019 and February 2022 using a topic guide. Two researchers performed combined inductive/deductive thematic data analysis.ResultsAll 15 interviewees (average age, 79 years) lacked ACP awareness and information. Some had discussed specific end-of-life preferences (e.g. care location, burial place) with family. Still, many did not feel the need to discuss future healthcare preferences, due mainly to trust in God and family for caretaking and decision-making. Some respondents viewed ACP discussions as applicable, relieving the burden on family and enabling proactive addressing of ‘what if’ questions. Self-identified ACP barriers were fear of making wrong decisions, ‘living in the moment’ and difficulty discussing death. Facilitators were obtaining sufficient ACP information and recent family illness or death.ConclusionOur sample of Turkish-origin older adults in Belgium requiring palliative care lacked ACP knowledge. Our findings suggest that their lack of engagement in discussing end-of-life medical care planning was linked to their family dynamics and religion. The findings have implications for healthcare providers to ethnic-minority groups.

Attitudes and Perceptions on Advance Care Planning Among Chinese-Speaking Older Australians.

Current literature indicates low uptake of advance care planning (ACP) among the Chinese-speaking community in Australia. To increase the uptake of ACP among the Chinese-speaking community, a better understanding of their attitudes and perceptions on end-of-life (EOL) matters, and ACP is required. This study aimed to identify significant events and social and cultural factors that influence participants' values and characterize the attitudes and perceptions towards ACP among older Chinese-speaking Australians. A qualitative study explored participants' experiences through semi-structured one-to-one interviews. The interviews were conducted in Mandarin, Cantonese or English, then translated and transcribed into English. The transcripts were coded and analysed thematically. Twenty participants were recruited (14 female, six male). Participants typically reported a preference to make health-related decisions autonomously. Their perspectives were grounded in past experiences of illnesses and EOL decision-making of loved ones, personal values, and perceived needs. Family dynamics and intimacy of relationships appeared to influence the role and responsibility of family members in EOL decision-making and ACP. Most participants perceived the need to engage in ACP only when encountering significant health changes or higher care needs. Healthcare professionals should initiate ACP discussion using culturally appropriate communication with consideration of personal values, past experiences and family dynamics. Efforts should be invested in raising public awareness of ACP within the Chinese-Australian community.

Making Advance Care Planning a part of cancer patients’ end-of-life care in Rwanda

After the devastating damage inflicted by the 1994 Genocide against the Tutsi, Rwanda made great strides in reconstructing its healthcare system from scratch. Although cancer mortality rates continue to rise, there is still a dearth of qualified healthcare workers for advance care planning (ACP) for terminally ill patients. I will draw on lessons learned through the literature search for the initiation of ACP and reflect on their adaptation to the existing policies, healthcare systems, and workforce in Rwanda. We hope to introduce advance care planning into the clinical package given to patients with cancers in terminal illness and their families in Rwanda.The introduction of ACP by skilled, qualified, and specialized healthcare professionals in Rwanda will help establish a practical ACP strategy at the hospital and in the community to benefit patients and their loved ones for an enhanced quality of life in end-of-life care. There is a need for training, policy-making, and community mobilization for the awareness of ACP.

How should Argentina raise Advance Care Planning awareness? Introduction of the Shared Care Planning Group

The WHO Concept Model of Palliative Care emphasises empowering people and communities with Advance Care Planning (ACP). In Latin America, a more relational approach involving family members is suited to ACP. Improvements in doctor-patient-family relationships are needed. Policy efforts have been made to foster ACP in Argentina's healthcare system, but implementation barriers include a need for more communication skills and coordination between healthcare providers. The Shared Care Planning Group Argentina aims to promote ACP through research and training programs. It has sensitised and trained 236 healthcare providers in short courses to introduce basic information and skills. However, there needs to be specific documentation for ACP in Argentina. Research found obstacles to ACP implementation, such as the inability to converse with patients and the lack of coordination between healthcare teams. A new project will assess the self-efficacy of healthcare professionals who assist patients with Sclerosis Lateral Amyotrophic in ACP and evaluate a specific training program. Patient and public involvement in ACP remains limited in Argentina, with paternalistic medical culture and a need for more awareness and training among healthcare professionals as significant barriers. Collaborative research projects with Spain and Ecuador aim to train healthcare professionals and evaluate ACP implementation in other Latin American countries.

Federal Advance Care Planning Policy Primer - Key Aspects, Barriers, and Opportunities.

Advance care planning (ACP) is a nuanced process where patients identify their goals and consider their preferences for medical care over time. Recent systematic reviews have shown mixed findings about the association of ACP with the provision of goal-concordant care, completion of advance directives, and health care utilization. Despite a lack of consistent benefit, patients and clinicians value ACP and policy makers at the state and federal level have been moving ACP policies forward. All fifty states have policies regarding advance directives, and federal policy has had important implications on promoting awareness of ACP and its corresponding legal documents such as advance directives. However, challenges to effectively incentivize and facilitate the delivery of high-quality ACP exist. This paper provides an overview of key federal policy aspects and barriers that affect ACP use including: limitations of Medicare ACP billing codes, disparities in telemedicine access, difficulties with interoperability of advance directives, and underutilization of ACP as a mandatory measure in federal programs. This paper highlights key opportunities to improve federal ACP policy. Because ACP is an essential part of high-quality care and is deeply embedded in state and federal policies, it is imperative that clinicians are knowledgeable about these issues so they may more effectively engage in ACP policy.

The Web-Based Advance Care Planning Program "Explore Your Preferences for Treatment and Care": Development, Pilot Study, and Before-and-After Evaluation.

Web-based advance care planning (ACP) programs may support patients in thinking about and discussing their preferences for future treatment and care. However, they are not widely available, and only a limited number of programs are evidence based. We aimed to develop and evaluate an evidence-based, interactive web-based ACP program that guides users through the process of thinking about, discussing, and recording of preferences for treatment and care. The program "Explore your preferences for treatment and care" was developed, pilot-tested on feasibility, and subsequently evaluated; engagement in ACP was assessed before program completion and 2 months after program completion using the ACP Engagement Survey (score 1-5) among 147 persons with chronic disease. Usability (score 0-100) and user satisfaction (score 1-5) were also assessed. ACP engagement increased from 2.8 before program completion to 3.0 two months after program completion (P<.001); contemplation about ACP increased from 2.6 to 2.8 (P=.003), and readiness for ACP increased from 2.2 to 2.5 (P<.001). No changes were found for knowledge about ACP (3.0-3.2; P=.07) and self-efficacy for ACP (3.8-3.8; P=.25). The program was perceived as usable (mean 70, SD 13), attractive (mean 3.8, SD 0.7), and comprehensible (mean 4.2, SD 0.6). We developed an evidence-based, interactive web-based ACP program in cocreation with patients, relatives, and health care professionals. Before-and-after evaluation showed that the program can support people in taking first steps in ACP and in reflecting on preferences for treatment and care, by guiding them through the process of ACP using a stepwise approach. Participants perceived the program as usable and understandable, and they were satisfied with the program and with the amount of information. Health care professionals may use the program as a tool to start ACP discussions with their patients. The program may increase awareness of ACP.

The explorations of the awareness, contemplation, self-Efficacy, and readiness of advance care planning, and its predictors in Taiwanese patients while receiving hemodialysis treatment

BackgroundEnd-stage renal disease (ESRD) is a major chronic illness worldwide, and Taiwan reports one of the highest incidence rates of ESRD with 529 cases per million population (pmp). A number of patients with ESRD patients might require lifelong hemodialysis (HD) or peritoneal dialyses (PD). Due to the progression of dialysis, patients are likely to experience other chronic comorbidities, anxiety and depression, frequent hospitalizations, and higher rates of mortality compared to patients with other types of chronic illnesses. As a result, dialysis patients are prone to experience advance care planning (ACP) needs, such as whether they withdraw from receiving dialysis while approaching their end-of-life (EOL). Yet, existing studies have shown that dialysis patients seldom receive timely consultation regarding ACP and there are limited studies examining ACP amongst Taiwan HD patients.PurposeThe purpose of this study was to examine ACP awareness, contemplation, self-efficacy and readiness; and factors influencing ACP readiness.DesignThis cross-sectional descriptive study with convenience sampling was conducted in the out-patient HD unit at a regional teaching hospital in southern Taiwan. A total of 143 ESRD patients undergoing HD treatments were recruited. A 55-item ACP engagement survey containing the subscales of awareness, contemplation, self-efficacy, and readiness was employed. The data were analyzed with t-tests, one-way ANOVAs, Pearson’s correlations and multiple regressions.ResultsThe results of our investigation revealed that approximately half of the participants (n = 67, 46.9%) were not informed of ACP. Although they reported considering their EOL, medical decisions and desired care, they demonstrated significantly low self-efficacy in discussing ACP (t= -5.272, p < 0.001). HD duration influenced all four ACP subscales; religious beliefs significantly influenced ACP-self-efficacy and readiness; and marital status, education, and primary decision-maker status significantly influenced ACP-readiness. The predictors of ACP-readiness were high self-efficacy and being the primary decision-maker (Adjusted R2 61%).ConclusionMost of the HD patients in this study had low ACP-awareness, contemplation, self-efficacy, and readiness, and most had not completed any ACP-related advance directives (AD). Healthcare professionals should proactively provide HD patients with ACP-related information and answer patients’ and medical decision-makers’ questions in a timely manner, thereby improving the quality of EOL care.

Important Factors Influencing Willingness to Participate in Advance Care Planning among Outpatients: A Pilot Study in Central Taiwan

Advance care planning (ACP) and advance directives (ADs) ensure patient autonomy in end-of life care. The number of ADs made and followed in Taiwan is still lacking. This study aimed to determine the factors that influence the willingness to participate in ACP among outpatients in Taiwan. In this study, we conducted a cross-sectional survey based on convenient sampling methods. The questionnaire included questions about participants’ basic sociodemographic information, knowledge of ACP, and awareness of ACP. A total of 198 adults who were outpatients of a family medicine clinic in an affiliated hospital in Taiwan were recruited. The associations between each variable were evaluated using the χ2 test. The adjusted odds ratios (ORs) and 95% confidence intervals (CIs) were calculated using the logistic regression method to examine the influence of each variable on willingness to participate in ACP. Being happy and being a healthcare professional were positively correlated with ACP participation. A lack of ACP knowledge (OR = 0.30 in model A and OR = 0.42 in model C), valuing “Reducing families’ end-of-life decision-making burden” (OR = 2.53 in model B and OR = 2.65 in model C), and a “Belief in a good death” (OR = 4.02 in model B and OR = 4.10 in Model C) were the main factors affecting subjects’ willingness to participate in ACP. Knowing which factors influence willingness to participate in ACP helps in the promotion of ACP. Continuously educating both the general public and healthcare professionals strengthens knowledge about the right to autonomy, about its associated laws, and about the ACP process, and thus, programs should be created to provide this education. Additionally, taking into account the differences between cultures can be helpful.

Contextual factors influencing advance care planning in home care: process evaluation of the cluster-randomised controlled trial STADPLAN

BackgroundThe STADPLAN study is a cluster-randomised controlled trial including 27 home care services in Germany. It assesses the effect of an advance care planning (ACP) intervention delivered by trained nurses to older care-dependent patients. Patients received two ACP conversations and an information brochure. Nurses were educated through a two-day programme and topic guides structuring the conversations.Objectives of the process evaluation were to determine: [1] whether the intervention was implemented as planned, [2] which change mechanisms were observed, [3] whether targeted process outcomes were achieved and [4] in which way contextual factors influenced the implementation process.MethodsThe process evaluation is based on a mixed methods approach following the recommendations of the UK-MRC framework for the development and evaluation of complex interventions. Qualitative and quantitative assessments were developed and analysed guided by a logic model comprising intervention, participants, mechanisms of change and context factors. The results of the main trial will be published elsewhere.ResultsEducational programme and topic guides were mostly implemented as planned and resulted in motivation, knowledge, and perceived competencies to facilitate ACP conversations in nurses. Deviances in the performance of ACP conversations indicated patients’ varied individual needs, but also obstacles like reluctance of patients and caregivers to participate actively and time constraints of nurse facilitators. Patients and caregivers reported increased awareness of ACP, planning and other activities indicating that targeted process outcomes could be achieved. The relevance of multifaceted contextual factors acting as barriers or facilitators for the engagement in ACP interventions on the individual, organisational and macro level was evident.ConclusionsThe process evaluation elicits obstacles and achievements of the ACP intervention. The logic model organised a plethora of mixed methods data into a holistic picture of multifaceted results. Nurses as ACP facilitators in home care can fulfil a crucial initiating role based on a trusting relationship with their patients. To support older care-dependent people’s ACP engagement, access should be simplified.Furthermore, education for nurse facilitators and sufficient resources for service provision are needed. Independent of monetary reimbursement, healthcare providers must respect patients’ choice for or against any ACP intervention.Ethics and trial registrationApproved by the Ethics Committees of Martin Luther University Halle-Wittenberg (Ref.-No. 2019–045), Carl von Ossietzky University Oldenburg (Ref.-No. 2019–024), and University of Lübeck (Ref.-No. 19–080).German Clinical Trials Register: DRKS00016886. Registered retrospectively 04/06/2019, first participant included 29/05/2019.

Australian general practice experiences of implementing a structured approach to initiating advance care planning and palliative care: a qualitative study

ObjectivesInitiation of advance care planning (ACP) and palliative care (PC) assessments in general practice is key to quality end-of-life care. The Advance Project promotes a team-based approach to initiating ACP and PC needs assessment in general practices through training, resources and practical support for implementation from local primary health networks (PHNs). This paper aims to understand: (1) general practice participants’ experiences of undertaking Advance Project training and implementing the Advance Project resources in their practices; (2) barriers and facilitators to implementation of Advance Project resources; and (3) PHN staff experiences of supporting general practices through training and practical support for implementation of the Advance Project resources.DesignQualitative study using semistructured interviews and thematic analysis.SettingTwenty-one general practices and four PHNs from three Australian states were recruited between June 2019 and May 2020.ParticipantsGeneral practitioners (GPs), general practice nurses, practice managers (PMs) and PHN staff.Results45 participants comprising 13 GPs, 13 general practice nurses, 9 PMs, 3 allied health staff and 7 PHN staff were interviewed. The general practice participants generally agreed that the Advance Project training/resources led to changes in their own behaviour and increased their awareness of the importance of ACP/PC discussion with their patients. Participants reported the following benefits for patients: increased awareness of ACP; engagement with families/carers and peace of mind. Key facilitators for successful implementation were a team-based approach, the role of the PHN, the role of practice champions, training facilitators’ ability to influence peers and facilitate change, and mentoring support. Barriers to implementation included issues related to workplace culture, cost, time/workload, patients and health system.ConclusionFindings suggest that the Advance Project approach facilitated successful implementation of ACP and PC needs assessment into usual care in general practices that encouraged teamwork among GPs and general practice nurses. The ability of the practice to make the best use of practical support and guidance available to them through their local PHN both before and during implementation was a key factor in integration of Advance Project resources into routine practice.

Awareness, Attitudes, and Willingness of Young Adults in Mainland China Regarding Advance Care Planning: A Cross-Sectional Study

Background: Advance care planning (ACP) can help healthy young adults enhance their sense of responsibility and can assist others to complete their own end-of-life wishes. Therefore, this study assessed the awareness and attitudes of young adults toward ACP to check their willingness to participate in ACP to popularized it. Purpose: The purpose of this study was to explore the awareness and attitudes of ACP among young adults in mainland China, and determine factors associated with their willingness to participate in ACP. Methods: A total of 1312 Chinese young adults were surveyed by using the Advance Care Planning Questionnaire (ACPQ) between December 2020 and May 2021 in Jiangsu Province, China. Results: The level of young adults’ awareness of ACP was low, but the attitude toward ACP was positive. Monthly income, encouraged by others to participate in ACP, and death-related experiences in the last five years can affect the willingness of ACP among young adults. Conclusion: This study indicated a low awareness but supportive attitude toward ACP amongst young adults in mainland China. Patient education, public advocacy, and future research on young adult-centered models of shared decision-making are needed to increase young adults’ understanding of ACP and to enable them decision-making empowerment.

Part of the solution: A survey of community organisation perspectives on barriers and facilitating actions to Advance Care Planning in British Columbia, Canada.

BackgroundDespite the established benefits of Advance Care Planning (ACP), engagement remains low in British Columbia. Since 2016, a growing number of community‐based nonprofits have offered ACP education. To date, no study has focused on the perspectives of nonprofits on ACP in British Columbia.ObjectiveThis study aimed to identify barriers and facilitating actions to ACP as perceived by British Columbian nonprofits.DesignA mixed‐methods design was used. Data were collected through online surveys and telephone interviews.Setting and ParticipantsStaff and volunteers from British Columbian nonprofits that are providing or interested in providing public education on ACP were recruited for this study.ResultsThe lack of public awareness of ACP, the emotional difficulty of the conversation, the complicated ACP process, the belief that ACP is synonymous with completing a medical order form, the challenge of introducing ACP in different cultural contexts and the siloed approach to ACP education were rated as the most important barriers to ACP engagement. The most important facilitating actions were developing clear messages, improving ACP literacy, reframing ACP as part of life planning, simplifying ACP documentation and transfer, integrating ACP conversations into clinical practice and better collaboration between the health system and nonprofits.DiscussionThis study identifies numerous opportunities to improve ACP engagement in British Columbia from a community lens. To maximize ACP engagement, community‐led ACP education should be offered in coordination with the health system.ConclusionCommunity‐led ACP education as well as collaboration and consultation with nonprofits are part of the solution to the low ACP engagement in British Columbia.Public ContributionStudy participants, including staff and volunteers at nonprofits, are members of the public.

Awareness and attitudes towards advance care planning in primary care: role of demographic, socioeconomic and religiosity factors in a cross-sectional Lebanese study

ObjectiveTo assess awareness and attitudes towards engaging in advance care planning (ACP) and their relationship with demographic, socioeconomic and religiosity factors among Lebanese middle-aged to older-aged adults in primary care.DesignA...

Perceptions of Behavioral Awareness, Intention, and Readiness for Advance Care Planning: A Mixed-Method Study among Older Indigenous Patients with Late-Stage Cancers in Remote Areas of Eastern Taiwan.

The first Patient Right to Autonomy Act enacted in Asia in 2019 has enabled every Taiwanese citizen to plan for his/her end-of-life (EOL) in case of incompetency. Advance care planning (ACP) has been highly promoted for individuals with terminal, life-threatening illnesses, particularly in the mainstream society, and efforts have been made by the Taiwanese government to train health care providers in order to optimize patients’ quality of dying. However, such advanced decisions and discussions regarding life-sustaining treatment and EOL care remain scarce among older ethnically minority patients. A multiple-case study employing a mixed-method (n = 9) was undertaken to explore indigenous patients’ ACP perceptions. Both quantitative and qualitative information was obtained from indigenous patients, a minority group whose socio-economic and educational status are different from the general Taiwanese population. An initiative was made to describe ACP behavioral awareness, intention, and readiness of older terminal patients from four tribes with seven late-stage cancers in remote, mountainous areas of eastern Taiwan. Our findings showed that according to the Transtheoretical Model, terminal indigenous patients’ ACP readiness was at a precontemplation stage. Their lack of fundamental ACP awareness, insufficient healthcare resources, life-sustaining value in a Christian faith context, and the prevalent health disparity in the remote communities have negatively affected indigenous patients’ intention to participate in ACP. We provide suggestions to further promote ACP in this group and suggest that health information should be tailored at various readiness stages in order to overcome barriers and decrease ACP literacy discrepancies. This study calls attention to an understudied area of ACP behaviors, an overlooked need in EOL care for older cancer patients of unique cultural backgrounds, and the imperativeness to ensure cultural minority group’s EOL care is consistent with patients’ preferences.

Rising Awareness of Advance Care Planning

Summary Interest in advance care planning is broadening among health care professionals, but implementation can bog down between primary care and inpatient settings.

139 What are the Barriers and Facilitators to Effective Advance Care Planning (ACP) in Residential Care Settings for Older People?

Abstract Introduction ACP is recommended for all people approaching the end of life but there is an inequality in access to ACP for care home residents. In North East Essex there has been an Electronic Palliative Care Coordination system (EPaCCS) in place for 6 years, currently without care home staff access capability. The aim of this study was to investigate ACP within care homes within this context. Method A qualitative study, with semi-structured interviews with fourteen senior care home staff from ten care homes across North East Essex. The interview transcripts underwent thematic analysis regarding facilitators and inhibitors to effective ACP. Results Four overarching themes were identified. These were relationships, communication, healthcare systems and attitudes. Care home staff considered ACP to be part of their role but perceived their work in this area to be separate from that performed by other health care professionals. The care home staff awareness of ACP done by other health care professionals was limited. Care home staff were aware of the EPaCCS, but only a minority perceived it to impact on residents care. All interviewees were keen to have access to the EPaCCS. Many of the facilitators and barriers to effective ACP in this locality are consistent with those found in prior literature. Having an EPaCCS within the area did not alleviate a perceived barrier of poor communication. Relationships between staff, residents, families and health care professionals remain the most common facilitators to ACP, with continuity of care from primary care, specialist palliative care and paperwork tools remaining important. Conclusion To overcome the inequity of access to ACP for residents in care homes interventions could be commissioned to address current barriers. These could include communication skills training, aligned primary care and community services as well as technological support for communication with family and access to EPaCCS.

Evaluating the Implementation of the Conversation Starter Kit in Long Term Care.

IntroductionAdvance care planning can improve the quality of life for residents in long-term care homes and reduce stress for families. However, care home staff and families often lack knowledge about advance care planning, making it especially difficult for residents with dementia to communicate their care plan wishes. A Conversation Starter Kit may increase advance care planning awareness among staff and families.ObjectivesThis study evaluated an advance care planning intervention, the Conversation Starter Kit booklet, for use in long term care homes.MethodsData were collected at three long-term care homes in southern Ontario. We collected data from 55 residents who were able to make decisions on their own paired with 11 family members of these residents. We also collected data from 24 family members of residents who were unable to make decisions on their own. This study used a quasi-experimental, one group pre/post design. Quantitative surveys were administered before and after a three-month advance care planning intervention. An additional structured interview was completed at the end of the intervention period, which included both closed and open-ended questions to assess perceptions about the booklet's use or non-use.ResultsResidents reported more engagement in advance care planning after completing the Conversation Starter Kit booklet, particularly related to asking questions to health care providers about health care decisions. Family members reported feeling very certain that they would be able to make decisions on behalf of the resident but felt less certain after completing the booklet, implying the booklet raised their awareness of the types of decisions they might need to make, hopefully prompting them to be more prepared for decisions in the future.ConclusionsAn advance care planning intervention – The Conversation Starter Kit booklet - appears acceptable and easy to use for residents and family members/friends in long-term care and can improve resident engagement in advance care planning. Although using the booklet may decrease efficacy for decision making among family members of long-term care residents, it may highlight the importance of more actionable engagement in advance care planning among residents, their families/friends, and staff.

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

To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. 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. 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.