Factors affecting advance directives completion among older adults in Korea.

Objective: Advance directives (ADs) provide an opportunity for patients to enhance the quality of their end-of-life care and prepare for a dignified death by deciding treatment plans. The purpose of this study was to explore the multiple factors that influence the advance directives completion among older adults in South Korea. Methods: This was a secondary analysis of a cross-sectional study of 9,920 older adults. The differences in ADs based on subjects' sociodemographic characteristics, health-related characteristics, and attitude toward death were tested using the chi-squared and t-test. A multinomial logistic regression model was used to identify the influencing factor of ADs. Results: The number of chronic diseases, number of prescribed medications, depression, insomnia, suicide intention, and hearing, vision, or chewing discomfort were higher in the ADs group compared to the non-ADs group. The influencing factors of the signing of ADs included men sex, higher education level, exercise, death preparation education, lower awareness of dying-well, and experience of fracture. Conclusion: Information dissemination regarding ADs should be promoted and relevant authorities should consider multiple options to improve the physical and psychological health of older adults, as well as their attitude toward death to increase the ADs completion rate.

Advance statements in mental healthcare: time to close the evidence to practice gap.

This article discusses advance statements in mental health care, which allow individuals with mental disorders to express their preferences for treatment during mental health crises. Despite the evidence supporting their effectiveness, their implementation in clinical practice remains limited. This article explores variations among advance statements, such as psychiatric advance directives (PADs), joint crisis plans (JCPs) and self-binding directives (SBDs), highlighting their content, development process and legal status. We outline the benefits of advance statements, including empowerment, early intervention, improved therapeutic relationships and reduced compulsory admissions. We then draw attention to the challenges that may contribute to their lack of implementation, including legal complexities, communication issues, cultural factors, potential inequities, healthcare provider knowledge, changing preferences, resource constraints, crisis responses, data privacy, family involvement, and long-term evaluation. In conclusion, advance statements offer significant benefits but require addressing these critical aspects to ensure ethical and effective use. Bridging the evidence-to-practice gap is essential, with a focus on implementation science. Integrating these tools into routine clinical practice can significantly benefit individuals with severe mental disorders and mental health systems.

Advance Directives for Patients With Breast Cancer: Applying the Right Info/Right Care/Right Patient/Right Time Oncology Model.

Background Advance directives (AD) are an important component of life care planning for patients undergoing treatment for cancer; however, there are few effective interventions to increase AD rates. In this quality improvement project, the authors integrated AD counseling into a novel right info/right care/right patient/right time (4R) sequence of care oncology delivery intervention for breast cancer patients in an integrated health care delivery system. Methods The authors studied two groups of patients with newly diagnosed breast cancer who attended a multidisciplinary clinic and underwent definitive surgery at a single facility. The usual care (UC) cohort (N = 139) received care from October 1, 2019 to September 30, 2020. The 4R cohort (N = 141) received care from October 1, 2020 to September 30, 2121 that included discussing AD completion with a health educator prior to surgery. The authors used bivariate analyses to assess whether the AD intervention increased AD completion rates and to identify factors influencing AD completion. Results The UC and 4R cohorts were similar in age, gender, race/ethnicity, interpreter need, Elixhauser comorbidity index, National Comprehensive Cancer Network distress score ≥ 5, surgery type, stage, histology, grade, and Estrogen receptor/Progesterone receptor/ human epidermal growth factor receptor 2 (ER/PR/HER2) status. AD completion rates prior to surgery were significantly higher for the 4R vs UC cohort (73.8%, 95% confidence interval [CI] [66.5%-81.0%] vs 15.1%, 95% CI [9.2%-21.1%], p < .01) and did not significantly differ by age, race, need for interpreter, or distress scores. Conclusion Incorporation of a health educator discussion into a 4R care sequence plan significantly increased rates of time-sensitive AD completion.

On Psychological Continuity and Dementia.

This letter responds to the article "On the Authority of Advance Euthanasia Directives for People with Severe Dementia: Reflections on a Dutch Case," by Henri Wijsbek and Thomas Nys, in the September-October 2022 issue of the Hastings Center Report.

Exploring Five Wishes and End-of-Life Care Planning in Young Adults.

INTRODUCTION: Our study aims to (1) examine the perspectives of young adults toward Five Wishes, and (2) measure their preferences related to personal, emotional, spiritual, and medical choices in end-of-life care planning. METHODS: Data were collected using a structured survey questionnaire and Five Wishes. Participants include graduate students (n = 30) attending a university in New York State. Bivariate summary statistics were performed to address the study aims. RESULTS: The average age of the participants was 24 years old; 60% were female, 60% White, and 27% Black. In the case of permanent and severe brain damage without the expectation to wake up or recover, 63% of the participants do not want life-support treatment. In the event of a coma without expectation to wake up or recover, 53% do not want life-support treatment. When close to death, 80% want to have religious or spiritual readings and well-loved - poems read aloud. CONCLUSION: Young adults are capable of making their own decisions about appointing a health care proxy and making choices for their personal, emotional, spiritual, and medical care for the future. The present findings intend to make contributions to the research pertaining to end-of-life care that promotes population-based healthcare decision-making, education, and awareness among young adults.

Promoting and hindering factors in the use of advance statements by Australian mental health clinicians.

WHAT IS KNOWN ON THE SUBJECT?: Australia is a commonwealth of federated states and territories with each having unique mental health legislation. Victoria implemented advance statements based on legislation from overseas jurisdictions such as Scotland. The aim of this Victorian legislation was to underpin an individual's autonomy and decision-making in relation to treatment, particularly compulsory treatment. Advance statements allow individuals within the healthcare setting to document preferences for care and treatment during times of decompensated mental health, including informing nominated persons and preferences for recovery-oriented care; however, advance statements continue to attract barriers in their implementation and use. WHAT THIS STUDY ADDS TO EXISTING KNOWLEDGE?: This paper focuses on legislation within one jurisdiction, Victoria, highlighting that several barriers to uptake exist, including uncertainty around the legal status of advance statements, the ideal setting to implement advance statements and concern around perceived consumer capacity to contribute to developing advance statements. There are substantial differences of opinion regarding adherence to treatment and recovery preferences contained within the advance statement, especially when decisions are made in the context of decompensated mental health. The Theoretical Domains Framework (TDF) model has been used to formulate recommendations in several other health studies, but to date has not been used to provide recommendations for greater implementation of advance statements. Implementation science is a contemporary research translation movement that seeks to identify factors and strategies that influence the adoption and integration of interventions like advance statements in real world settings. For this study it has been useful to identify barriers, consider implementation strategies and link this with policy frameworks to support practice change. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Our study revealed that real challenges exist for mental health clinicians in adopting advance statements despite them having a strong held intention to empower service users to play a greater role in their own treatment and care decisions. The facilitators identified in this study highlight the notion that advance statements, and the concept of supported decision-making are needed in contemporary mental health care. Implementation science can assist in identifying barriers and suggesting facilitators including enhanced training, incentivization of advance statement creation, and greater awareness of the overarching purpose and principle of advance statement creation. Continued support and training in implementing and maintaining advance statements is required if mental health clinicians are to drive the uptake of this important reform to mental health legislation. Training needs to be provided that will address attitudes, and strongly held beliefs that pose barriers to the use of advance statements. ABSTRACT: INTRODUCTION: Advance statements, also known as advance directives or psychiatric wills, provide individuals the opportunity to document care and recovery preferences during a period of mental ill health. Although the use of advance statements has gained momentum, little research has explored the factors that promote or hinder further uptake. AIM: To determine the factors that promote or hinder the uptake of advance statements. METHOD: Cross-sectional online survey of healthcare workers (n = 190). RESULTS: Promoting factors include high perceived value of advance statements, particularly their role in recovery focussed care, while hindering factors include disagreement or responsibility for advance statement creation and legal status. DISCUSSION: This study indicates that several hindering factors or barriers to advance statement uptake remain, and until these factors are addressed future implementation is arguably hindered. In this paper, we have used the Theoretical Domains Framework (TDF) model to outline suggestions to address hindering factors to implementation and guide future implementation strategies for advance statement uptake and practice change. IMPLICATIONS FOR PRACTICE: The ongoing uptake of advance statements requires tailored implementation strategies address hindering factors. Strong promoting factors, such as the shared belief in the advance statement model and its role in recovery focused care, should be considered a strong foundation for implementation strategies.

Comparing Variations in Advance Directives Timing among Older Adults with End-Stage Renal Disease versus Cancer.

Background: Having an advance directive (AD) is associated with better care at end of life and better quality of death. However, AD completion rates among End-Stage Renal Disease patients are lower than among cancer patients. ESRD patients commonly experience cognitive impairment, reducing their ability to make their own care choices as their disease progresses. Thus, having an AD earlier in the disease trajectory is important. Little is known about differences in AD completion timing among ESRD and cancer patients. Therefore, the purpose of this study was to (1) investigate difference in AD completion and timing between ESRD and cancer patients; and, (2) identify factors associated with the early and late AD completion. Setting and Participants: A retrospective cohort study was conducted. Data was drawn from the Health and Retirement Study, a United States representative longitudinal survey of older adults, using exit interviews conducted from 2006 to 2016 among 1886 proxy reporters of deceased participants with ESRD or cancer. Results: ESRD patients had lower rates of AD completion compared to those with cancer. Higher education and being older were negatively associated with late AD completion in the last 3 months of life. Additionally, decedents with a diagnosis of ESRD, older age, and with higher education had higher odds of completing ADs one year or more before death. Discussions/Conclusions: While ESRD patient were less likely to have ADs, those that had ADS were more likely than cancer patients to develop ADs earlier in the disease trajectory. Further studies are needed to determine effective strategies to increase the AD completion rate among patients with ESRD.

Challenges of anticipation of future decisions in dementia and dementia research.

Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, little is known about what affected people deem anticipatable.This contribution provides a critical reflection of the literature on anticipation and of a qualitative study on the assessment of ARDs with persons with cognitive impairment in Germany. It combines theoretical and empirical reflections to inform the ethical-legal discourse.Anticipation involves the conceptual separation of the past, the present, and the future. Including dimensions such as preparedness, injunction, and optimization helps in establishing a framework for anticipatory decision-making. While dementia may offer a window of time to consider future decisions, individual beliefs about dementia including fears about stigma, loss of personhood, and solitude strongly impact anticipating sentiments. Concepts of anticipation can be useful for the examination of uncertainty, changing values, needs, and preferences interconnected with the dementia trajectory and can serve as a means to make an uncertain future more concrete. However, fears of losing one's autonomy in the process of dementia also apply to possibilities of anticipation as these require cognitive assessment and reassessment of an imagined future with dementia.

Appropriateness of psychiatric advance directives facilitated by peer support specialists and clinicians on Assertive Community Treatment teams.

BACKGROUND: Psychiatric advance directives (PADs) are used to document a person's treatment preferences for a future mental health crisis. Peer support specialists have been proposed to facilitate PADs, but little is known about the quality of peer versus clinician facilitated PADs. AIMS: This study examined whether PAD documents facilitated by peer specialists and non-peer clinicians differed in the mix of treatment requests and refusals and expert ratings of feasibility and consistency. METHODS: Analyses were conducted of content and expert ratings of 72 PAD documents from a randomized trial of PAD facilitation by peers and clinicians on Assertive Community Treatment (ACT) teams. A count of treatment refusals and requests was used to classify documents as predominantly prescriptive, proscriptive, or balanced. Regression was used to estimate relationships between PAD facilitator type and content. RESULTS: Peer-facilitated PADs were significantly more likely to be predominantly prescriptive than were PADs facilitated by non-peer clinicians. Prescriptive PADs were more likely to receive expert ratings of high feasibility and consistency. CONCLUSIONS: Results should alleviate some clinicians' apprehensions regarding the appropriateness of peer-facilitated PADs, such as the concern that people with lived experience with mental illness might encourage other consumers to use their PAD primarily for treatment refusals.

Reasons for endorsing or rejecting self-binding directives in bipolar disorder: a qualitative study of survey responses from UK service users.

BACKGROUND: Self-binding directives instruct clinicians to overrule treatment refusal during future severe episodes of illness. These directives are promoted as having the potential to increase autonomy for individuals with severe episodic mental illness. Although lived experience is central to their creation, the views of service users on self-binding directives have not been investigated substantially. This study aimed to explore whether reasons for endorsement, ambivalence, or rejection given by service users with bipolar disorder can address concerns regarding self-binding directives, decision-making capacity, and human rights. METHODS: This qualitative study used data from an internet-based survey distributed to the mailing list of the UK charity Bipolar UK, which contained multiple closed and open questions on advance decision making for patients with bipolar disorder. We included participants who reported that they have been diagnosed with bipolar disorder by a professional (doctor or psychiatrist). In a previous study, quantitative analysis of a closed question about self-binding directives had shown endorsement among a high proportion of participants with bipolar disorder who completed the survey. In this study, we did a thematic analysis of responses from those participants who answered a subsequent open question about reasons for their view. Research was done within a multidisciplinary team, including team members with clinical, legal, and ethical expertise, and lived experience of bipolar disorder. Ideas and methods associated with all these areas of expertise were used in the thematic analysis to gain insight into the thoughts of individuals with bipolar disorder about self-binding directives and associated issues. FINDINGS: Between Oct 23, 2017, and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed the internet survey, with 565 individuals (154 men, 400 women, 11 transgender or other), predominantly white British, providing free-text answers to the open question. 463 (82%) of the 565 participants endorsed self-binding directives, of whom 411 (89%) describing a determinate shift to distorted thinking and decision making when unwell as their key justification. Responses indicating ambivalence (37 [7%) of the 565 responses) were dominated by logistical concerns about the drafting and implementation of self-binding directives, whereas those who rejected self-binding directives (65 [12%] of the 565 responses) cited logistical concerns, validity of their thinking when unwell, and potential contravention of human rights. INTERPRETATION: This study is, to our knowledge, the first large study assessing the reasons why mental health service users might endorse or reject the use of self-binding directives. The findings provide empirical support for introducing self-binding directives into mental health services as well as advance decision-making practice and policy, and might help address enduring ethical concerns surrounding possible implementation of the directive while a person retains decision-making capacity. The opinions expressed here in responses given by multiple service users with bipolar disorder challenge a prominent view within international disability rights debates that involuntary treatment and recognition of impaired mental capacity constitute inherent human rights violations. FUNDING: The Wellcome Trust.

Oncology nurses' perceptions of advance directives for patients with cancer.

This study examined oncology nurses' perceptions of the impact of advance directives on oncology patients' end-of-life care. Nurses (n = 104), who were members of an oncology nursing society or worked in a large metropolitan cancer center, completed a cross-sectional survey assessing perceptions of advance directives. There was high agreement that advance directives (i) make decisions easier for family (87%) and providers (82%); (ii) are doctors' responsibility to implement (80%); (iii) reduce unwanted aggressive treatment in the last weeks of life (80%); (iv) protect patient autonomy (77%); and (v) increase the likelihood of dying in a preferred location (76%). There was moderate or low agreement that advance directives (i) are accessible when needed (60%); (ii) are oncology nurses' responsibility to implement (46%); (iii) are always followed (41%); (iv) reduce the likelihood of pain in the last weeks of life (31%); (v) contain difficult to follow statements (30%); and (vi) have no impact on comfort in the last weeks of life (15%). Most nurses perceive benefits for advance directives, however, there remains uncertainty around accessibility and implementation. Guidelines and education about advance directive processes in oncology could improve person-centered end-of-life care.

Instrument Development: Knowledge, Attitudes, and Confidence in Palliative Care Concepts Held by Trauma and Neuroscience Intensive Care Nurses.

BACKGROUND AND PURPOSE: Unique pressures impact trauma intensive care unit (TICU) nurses in their provision of care for severely injured patients. When it becomes clinically obvious that these patients may not survive, TICU nurses must continue life-saving measures while at the same time consider a palliative care consultation. In order to facilitate this referral, TICU nurses need to have the appropriate knowledge, attitude, and confidence in doing so. The purpose of this study is to refine an instrument that aims to support this process. METHODS: A convenience sample of 42 respondents completed the Knowledge, Attitudinal, and Experiential Survey on Advance Directive (KAESAD). RESULTS: Domains with the highest Cronbach's alpha value were "professional attitudes" (α = .995) and "clinical experiences" (α = .999). CONCLUSIONS: Reliability assessments suggest that most domains of the instrument have strong internal consistency, and with a larger sample size, future studies may elucidate how nurse educators can use this instrument to target areas for continuing education.

Advance directives and end-of-life care: knowledge and preferences of patients with brain Tumours from Anhui, China.

BACKGROUND: In Mainland China, advance directives (ADs) and end-of-life care for patients with tumours, especially patients with brain tumours who may have lost consciousness or the ability to speak at the early stage of their illness, have been poorly acknowledged. Thus, this study aimed to clarify the knowledge and preferences of ADs and end-of-life care in patients with brain tumours and to investigate predictors of patient preferences. METHODS: This was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on sociodemographic factors, brain tumour illness, knowledge and preferences of the advanced decisions and end-of-life care of the patients was collected. RESULTS: A total of 88.61% of participants had never heard of ADs, but 65.18% reported that they would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, being younger than 70 years old, being male, having educational qualifications of college or beyond, being childless, having medical insurance for nonworking or working urban residents and self-paying medical expenses were predictors of preference for making ADs. A total of 79.43% of participants wanted to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care, even though it would not delay death. A total of 65.82% of patients with brain tumours wanted resuscitation, and as many as 45.45% of the patients thought that they did not need life support if they were in a persistent vegetative state. Brain primary tumours, being younger than 70 years old, male sex, educational qualification of junior middle school or below, having children, having new rural cooperative medical insurance and having medical expenses paid by children or spouses were predictors of choosing appropriate palliative care. CONCLUSIONS: ADs and end-of-life care have been poorly acknowledged among patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those who are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote disease-specific ADs among Chinese patients with brain tumours.

Impact of psychiatric advance directive facilitation on mental health consumers: empowerment, treatment attitudes and the role of peer support specialists.

BACKGROUND: A psychiatric advance directive (PAD) is designed to prevent involuntary mental health interventions by enabling people with serious mental illnesses to plan ahead for their own treatment during a future incapacitating crisis. This study implemented PAD facilitation in assertive community treatment (ACT) teams. AIMS: We examined ACT clients' attitudes toward PAD facilitators, satisfaction with PAD facilitation, the short-term impact of PAD completion on subjective sense of empowerment and attitudes toward treatment, and whether the type of PAD facilitator made a difference. METHODS: Participants were randomly assigned to be offered PAD facilitation by a peer support specialist or non-peer ACT team clinician, and interviewed at baseline (n = 145) and post-facilitation 1-2-month follow-up (n = 116), to assess perceived consumer-directedness of PAD facilitation, empowerment and various treatment attitudes. Mean scores before and after the intervention were compared for PAD-completers, non-completers, and those who completed a PAD with a peer vs. non-peer. The effect of PAD completion was assessed using logistic and linear regression analysis. RESULTS: There was no evidence of bias against peer-facilitators. There was a modest positive impact of PAD facilitation on treatment attitudes and empowerment. CONCLUSIONS: PAD facilitation by peer support specialists and others working in community mental health settings supports recovery.

Public Perceptions of Advance Care Planning, Palliative Care, and Hospice: A Scoping Review.

Background: Although access to advance care planning (ACP), palliative care, and hospice has increased, public attitudes may still be barriers to their optimal use. Purpose: To synthesize empirical research from disparate sources that describes public perceptions of ACP, palliative care, and hospice in ways that could inform public messaging. Data Sources: Searches of PubMed and other databases were made from January 2011 to January 2020. Study Selection: Studies reporting survey or interview data with the public that asked specifically about awareness and attitudes toward ACP, palliative care, or hospice were included. Data Extraction and Synthesis: Two reviewers independently screened citations, read full texts, and performed data abstraction. Twelve studies met inclusion criteria and included >9800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. For palliative care, 66% to 71% of participants reported no awareness of palliative care, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated palliative care favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions. Limitations: A limited number of studies met inclusion criteria, and some were published in nonpeer reviewed sources. The studies reflect public perceptions pre-COVID-19. Conclusion: Consumer perceptions of ACP, palliative care, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging.

Value of Advance Care Directives for Patients With Serious Illness in the Era of COVID Pandemic: A Review of Challenges and Solutions.

Advance care directives (ACDs) are instructions regarding what types of medical treatments a patient desires and/or who they would like to designate as a healthcare surrogate to make important healthcare decisions when the patient is mentally incapacitated. At end-of-life, when faced with poor prognosis for a meaningful health-related quality of life, most patients indicate their preference to abstain from aggressive, life-sustaining treatments. Patients whose wishes are left unsaid often receive burdensome life sustain therapy by default, prolonging patient suffering. The CoVID pandemic has strained our healthcare resources and raised the need for prioritization of life-sustaining therapy. This highlights the urgency of ACDs more than ever. Despite ACDs' potential to provide patients with care that aligns with their values and preferences and reduce resource competition, there has been relatively little conversation regarding the overlap of ACDs and CoVID-19. There is low uptake among patients, lack of training for healthcare professionals, and inequitable adoption in vulnerable populations. However, solutions are forthcoming and may include electronic medical record completion, patient outreach efforts, healthcare worker programs to increase awareness of at-risk minority patients, and restructuring of incentives and reimbursement policies. This review carefully describes the above challenges and unique opportunities to address them in the CoVID-19 era. If solutions are leveraged appropriately, ACDs have the potential to address the described challenges and ethically resolve resource conflicts during the current crisis and beyond.

Older Adults without Desired Surrogates in a Nationally Representative Sample.

BACKGROUND/OBJECTIVES: Little is known about older adults who have intact capacity but do not have a desired surrogate to make decisions if their capacity becomes impaired. DESIGN: Cross-sectional study of a nationally representative sample. SETTING: National Social Life, Health, and Aging Project (NSHAP), 2005-2006. PARTICIPANTS: Community-dwelling older adults without known cognitive impairment, aged 57 to 85, interviewed as part of NSHAP (n = 2,767). MEASUREMENTS: We examined demographic, medical, and social connectedness characteristics associated with answering "no" to this question: "Do you have someone who you would like to make medical decisions for you if you were unable, as for example if you were seriously injured or very sick?" Because many states permit nuclear family to make decisions for persons with no legally appointed health care agent, we used logistic regression to identify factors associated with individuals who were ill suited to this paradigm in the sense that they had nuclear family but did not have a desired surrogate. RESULTS: Among NSHAP respondents, 7.5% (95% confidence interval = 6.4-8.7) did not have a desired surrogate. Nearly 90% of respondents without desired surrogates had nuclear family. Compared with respondents with desired surrogates, those without desired surrogates had lower indicators of social connectedness. On average, however, they had four confidants, approximately 70% socialized at least monthly, and more than 90% could discuss their health with a confidant. Among respondents who had nuclear family, few characteristics distinguished those with and without desired surrogates. CONCLUSION: Nearly 8% of older adults did not have a desired surrogate. Most had nuclear family and were not socially disconnected. Older adults should be asked explicitly about a desired surrogate, and strategies are needed to identify surrogates for those who do not have family or would not choose family to make decisions for them.

Improving Patient Preparedness and Confidence in Discussing Advance Directives for End-of-Life Care with Health Care Providers in the United States and Japan.

BACKGROUND: The low completion rate of advance directives (ADs) has received attention in Japan and the United States, as policy makers and health care professionals face aging populations with multiple comorbidities. Among the barriers to AD planning, cultural values and attitudes appear to be particularly influential. A comparison of culturally distinct societies provides a deeper understanding of these barriers. Through such an approach, this study identifies strategies for increasing AD planning among late-middle-age Japanese and US individuals. METHODS: After giving informed consent for the Institutional Review Board-approved study, Japanese and US respondents (45-65 y; 50% female) without ADs completed a language-appropriate online survey. Participants were asked to review a decision aid as part of a scenario-based physician consultation regarding artificial nutrition and hydration (ANH). Hypotheses were analyzed using multigroup structural equation modeling. RESULTS: Important similarities were identified across the 2 groups. After reviewing the decision aid, both samples strongly preferred "no ANH." Respondents who strongly valued either self-reliance or interpersonal relationships experienced greater preparedness for AD planning. In both countries, greater decision preparedness and positive death attitude predicted greater confidence to discuss care options with a provider. Finally, cultural values predicted preference for family participation: respondents with a strong interdependent self-concept desired more family involvement, whereas high independents preferred less. CONCLUSIONS: Findings indicate the importance of documenting care preferences and accounting for individual differences. To increase AD adoption, providers should identify patient segments likely to benefit most from the interventions. Targeting individuals in both countries who value self-reliance and interpersonal relationships appears to be a good place to begin. Such individuals can be identified clinically through administration of validated measures used in this study.

Prevalence and factors associated with advanced care directives in a motor neuron disease multidisciplinary clinic in Australia.

OBJECTIVES: Motor neuron disease (MND) is a neurodegenerative disorder leading to functional decline and death. Multidisciplinary MND clinics provide an integrated approach to management and facilitate discussion on advanced care directives (ACDs). The study objectives are to analyse (1) the prevalence of ACD in our MND clinic, (2) the relationship between ACD and patient demographics and (3) the relationship between ACD decision-making and variables such as NIV, PEG, hospital admissions and location of death. METHODS: Using clinic records, all patients who attended the MND clinic in Liverpool Hospital between November 2014 and November 2019 were analysed. Data include MND subtypes, symptom onset to time of diagnosis, time of diagnosis to death, location and reason of death. ACD prevalence, non-invasive ventilation (NIV) and percutaneous endoscopic gastrostomy (PEG) requirements were analysed. RESULTS: There were 78 patients; M:F=1:1. 44 (56%) patients were limb onset, 28 (36%) bulbar onset, 4 primary lateral sclerosis and 2 flail limb syndrome presentations. 27% patients completed ACDs, while 32% patients declined ACDs. Patients born in Australia or in a majority English-speaking country were more likely to complete ACDs compared to those born in a non-English-speaking country. There was no significant correlation between ACD completion and age, gender, MND subtype, symptom duration, NIV, PEG feeding, location of death. CONCLUSION: One-quarter of patients completed ACDs. ACDs did not correlate with patient age, gender, MND subtype and symptom duration or decision-making regarding NIV, PEG feeding or location of death. Further studies are needed to address factors influencing patients' decisions regarding ACDs.