Operationalizing legal rights in end-of- life decision-making: A qualitative study.

BACKGROUND: For a patient's legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers. AIM: To explore barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia. DESIGN: Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making completed between November 2016 and October 2017. A thematic content analysis of interview transcripts. SETTING/PARTICIPANTS: Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers. RESULTS: Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making. CONCLUSION: In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.

Role of Law in End-of-Life Decision-Making: Perspectives of Patients, Substitute Decision-Makers and Families.

The law regulating medical end-of-life decisions aims to support patients to receive high-quality health care. It does so through ensuring treatment received reflects the person's wishes and values and protecting health professionals who provide adequate pain and symptom relief even if that treatment may coincidentally hasten death. However, good decision-making is predicated by those involved, including patients themselves and those supporting patients, being familiar with the law and the role it plays in the decision-making process. This article reports on a study exploring the role that law plays in end-of-life decision-making from the perspective of terminally-ill patients, their substitute decision-makers and family members. While participants' decision-making practices were often underpinned by a legal framework, the role of the law was largely invisible. Community education is needed for the public to know their legal rights and responsibilities, and to understand that the law plays a role in supporting end-of-life decision-making.

Embarking to Caregiving Role: A Thematic Analysis of Malay Caregivers of Older Adults with Mental Health Problems Perspectives.

Religion and culture affect the meaning and practicalities of caring for families with mental illness in Malaysia. Such care also differs according to social background, family values and support, commitment, availability, practicality and the needs of the care recipient. This qualitative study explores 14 Malay caregivers of the older adults with mental health problems in Kelantan, Malaysia. A semi-structured interview was translated and transcribed and subjected to thematic analysis using NVivo software. The findings show that cultural values and religion shaped the meaning of care as provided by the caregivers. The nature of the relationship is also important in determining the best person in the family to take over the caregiving role.

Prevalence of advance care directives in the community: a telephone survey of three Australian States.

BACKGROUND: The community prevalence of advance care directives (ACD) is low despite known benefits of advance care planning for patients, families and health professionals. AIM: To determine the community prevalence of instructional and appointing ACD in New South Wales, Victoria and Queensland and factors associated with completion of these documents. METHODS: A telephone survey of adults living in New South Wales, Victoria and Queensland (n = 1175) about completion of instructional ACD (making their own decisions about future healthcare) and appointing ACD (appointing another to decide). Quota sampling occurred based on population size by state, gender and age, with oversampling in smaller jurisdictions (Victoria and Queensland). RESULTS: Overall response rate was 33%. Six per cent of respondents reported completing an instructional ACD while 12% reported completing an appointing ACD. Female gender, higher educational level, personal experience of a major health scare and being widowed were significant predictors of completing an instructional ACD. Older age, higher educational level and being widowed were significant predictors of completing an appointing ACD. CONCLUSIONS: Despite long-standing efforts to increase advance care planning, community prevalence of ACD remains low, particularly for instructional ACD. This study found some different predictors for instructional ACD compared with appointing ACD, and also a potential role for experiential factors in triggering uptake. These findings suggest supplementing general community awareness campaigns with more nuanced and targeted efforts to improve ACD completion.

Community Knowledge of Law on End-of-life Decision-making: An Australian Telephone Survey.

The law has a clear role to play in supporting patients and their substitute decision-makers (SDMs) to be involved in end-of-life (EOL) decision-making. Although existing literature suggests that knowledge of EOL law is variable among health professionals, there is little information about the extent and sources of such knowledge within the general community. A telephone survey of a representative sample of adults in three Australian States used six case scenarios to examine the extent to which adults know their legal duties, rights and powers as patients or SDMs; the sources from which people derive relevant legal knowledge; experiences of EOL decision-making; and individual characteristics associated with levels of knowledge. The results show considerable variation in levels of legal knowledge dependent primarily of the area of decision-making presented, some sizeable gaps in people's knowledge of EOL law, and varied awareness of how to access appropriate information on this subject. This study points to the need to increase community legal literacy around EOL decision-making, enhance awareness of the role of law in these circumstances and promote the availability of reliable and accessible information on the law at the time when it is needed.

Community knowledge of law at the end of life: availability and accessibility of web-based resources.

Objective The aim of the present study was to identify online resources community members may access to inform themselves about their legal duties and rights in end-of-life decision making. Methods Resource mapping identified online resources that members of the public in New South Wales, Victoria and Queensland are likely to identify, and assessed the ease or difficulty in locating them. Resources were then critically analysed for accessibility of language and format using the Patient Education Materials Assessment Tool (PEMAT). Results Identified resources differed considerably based on whether search terms identified by community members or experts were used. Most resources focused on advance directives, enduring powers of attorney and substitute decision making. Relatively few provided information about legal duties (e.g. powers and responsibilities of substitute decision makers) or resolving conflict with health practitioners. Accessibility (understandability and actionability) of resource content varied. Conclusions Although numerous resources on end-of-life law are available online, community members may not be able to identify relevant resources or find resource content accessible. What is known about the topic? Research on participation by patients in decision making about their treatment has focused primarily on medical rather than legal knowledge. What does this paper add? The present study investigated which online resources community members may access to inform themselves about the law on end-of-life decision making. The resources identified were analysed for ease of location and content accessibility. What are the implications for practitioners? Authors of online resources on end-of-life decision making should consider whether their resources can be: (1) identified by search terms used by the public; (2) understood by a general audience; and (3) readily used to promote reader action.

Predictors of financial capacity performance in older adults using the Financial Competence Assessment Inventory.

BACKGROUND: Declines in financial capacity in later life may arise from both neurocognitive and/or psychiatric disorders. The influence of socio-demographic, cognitive, health, and psychiatric variables on financial capacity performance was explored. METHODS: Seventy-six healthy community-dwelling adults and 25 older patients referred for assessment of financial capacity were assessed on pertinent cognitive, psychiatric, and financial capacity measures, including Addenbrooke's Cognitive Examination - Revised (ACE-R), Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), Geriatric Depression Scale (GDS), Geriatric Anxiety Inventory (GAI), selected Neuropsychiatric Inventory (NPI) items, Financial Competence Assessment Inventory (FCAI), and Social Vulnerability Scale (SVS). RESULTS: The internal consistency of the debt management subscale of the FCAI was relatively poor in our sample. Financial capacity performance differed between controls and patients. In our sample, performance on the FCAI was predicted by Mini-Mental State Examination, IQCODE, and GAI, but not by ACE-R, GDS, NPI items, or SVS (adjusted R(2) = 0.7059). CONCLUSIONS: Anxiety but not depression predicted financial capacity performance, possibly reflecting relatively low variance of depressive symptoms in this sample. Current cognitive decline as measured by the informant-rated IQCODE was more highly correlated to financial capacity than either educational attainment or ACE-R scores. Lack of significance of ACE-R data may reflect the instrument's decreased sensitivity to domains relevant to financial capacity, compared with more detailed neuropsychological assessment tools. The FCAI displayed fairly robust psychometric properties apart from the debt management subscale.

Managing social support needs in older age for childless Malaysians living in poverty.

OBJECTIVE: To explore how older people manage social support needs when they are childless and living in poverty in the Malaysian context where social policy emphasises family as the primary provider of social support. METHODS: Semi-structured interviews were completed with a purposive sample of 34 childless and older Malaysians living in poverty in Kuala Lumpur, Malaysia. A thematic content analysis focused on their reports of managing social support needs. RESULTS: Key strategies were using existing resources, developing new networks and adjusting expectations. Agency played a vital role in avoiding institutional care. CONCLUSIONS: This paper adds to research on childlessness in older age in varied policy and cultural contexts. It challenges assumptions about families providing social support and argues for policies to recognise older people as an individual unit rather than as part of a family to prolong independent living in the community.

The new caring: financial asset management and older people.

Increasing longevity and the growing proportion of the aged in the population in most countries have served to focus on the question of how governments and older people can finance living, health, and care options in retirement. Prudent management of income and assets is an increasingly complex and important aspect of aging as assets and expectations of self-financing increase. Although many informal caregivers act as asset managers and/or substitute decision-makers for older people, little attention has been paid to this increasingly important aspect of care. This paper summaries key findings of a broad research program exploring family involvement in the management of older people's assets and the practices that constitute good practice as well as financial mismanagement and abuse. It identifies multi-level and multi-strategy responses needed to address the issues raised by the research and outlines an innovative community demonstration project aimed at improving financial management practices in relation to older people's assets.

Perceptions and employment intentions among aged care nurses and nursing assistants from diverse cultural backgrounds: A qualitative interview study.

The residential aged care industry faces shortages and high turnover rates of direct care workers. This situation is further complicated by the increasing cultural diversity of residents and staff. To retain direct care workers, it is crucial to explore their perceptions of the rewards and difficulties of care work, and their employment intentions in multicultural environments. A qualitative descriptive study was used to understand perceptions of the rewards and difficulties of residential aged care work for core direct care workers (i.e. nurses and nursing assistants), how these were related to their intentions to stay or leave, and how these varied between nurses and nursing assistants, and between locally and overseas born workers. Individual interviews were conducted between June and September 2013 with 16 direct care workers in an Australian residential aged care facility with a specific focus on people from culturally and linguistically diverse backgrounds. It was found that direct care workers' employment intentions were related to their perceptions and management of the rewards and difficulties of care work. Their experiences of care work, the employment characteristics, and the organizational resources that fitted their personality, ability, expectations, and essential needs were viewed as rewards. Evaluating their jobs as meaningful was a shared perception for direct care workers who intended to stay. Individual workers' perceptions of the rewarding aspects of care work served to counterbalance the challenges of care work, and promoted their intentions to stay. Perceptions and employment intentions varied by occupational groups and by cultural backgrounds. Overseas born direct care workers are valuable resources in residential aged care facility rather than a limitation, but they do require organizational support, such as cultural awareness of the management, English language support, a sense of family, and appropriate job responsibility. The findings indicated that aged care policy makers and service providers should understand the range of individual direct care workers' positive and negative perceptions, and their employment intentions within the context of their roles and their cultural backgrounds.

Referral to rehabilitation following traumatic brain injury: a model for understanding inequities in access.

Identifying inequities in access to health care requires critical scrutiny of the patterns and processes of care decisions. This paper describes a conceptual model, derived from social problems theory, which is proposed as a useful framework for explaining patterns of post-acute care referral and in particular, individual variations in referral to rehabilitation after traumatic brain injury (TBI). The model is based on three main components: (1) characteristics of the individual with TBI, (2) activities of health care professionals and the processes of referral, and (3) the contexts of care. The central argument is that access to rehabilitation following TBI is a dynamic phenomenon concerning the interpretations and negotiations of health care professionals, which in turn are shaped by the organisational and broader health care contexts. The model developed in this paper provides opportunity to develop a complex analysis of post-acute care referral based on patient factors, contextual factors and decision-making processes. It is anticipated that this framework will have utility in other areas examining and understanding patterns of access to health care.

Referral to rehabilitation following traumatic brain injury: practitioners and the process of decision-making.

The study aimed to examine the factors influencing referral to rehabilitation following traumatic brain injury (TBI) by using social problems theory as a conceptual model to focus on practitioners and the process of decision-making in two Australian hospitals. The research design involved semi-structured interviews with 18 practitioners and observations of 10 team meetings, and was part of a larger study on factors influencing referral to rehabilitation in the same settings. Analysis revealed that referral decisions were influenced primarily by practitioners' selection and their interpretation of clinical and non-clinical patient factors. Further, practitioners generally considered patient factors concurrently during an ongoing process of decision-making, with the combinations and interactions of these factors forming the basis for interpretations of problems and referral justifications. Key patient factors considered in referral decisions included functional and tracheostomy status, time since injury, age, family, place of residence and Indigenous status. However, rate and extent of progress, recovery potential, safety and burden of care, potential for independence and capacity to cope were five interpretative themes, which emerged as the justifications for referral decisions. The subsequent negotiation of referral based on patient factors was in turn shaped by the involvement of practitioners. While multi-disciplinary processes of decision-making were the norm, allied health professionals occupied a central role in referral to rehabilitation, and involvement of medical, nursing and allied health practitioners varied. Finally, the organizational pressures and resource constraints, combined with practitioners' assimilation of the broader efficiency agenda were central factors shaping referral.

Enduring powers of attorney: promoting attorneys' accountability as substitute decision makers.

AIM: The misuse and abuse of Enduring Powers of Attorney (EPAs) by attorneys, particularly in relation to financial decision-making, is a growing concern. This paper explores the opportunities to enhance accountability of attorneys at the time of the execution of the document in Queensland. METHOD: A four-stage multi-method design comprised a critical reference group; semi-structured interviews with 32 principals or potential principals, attorneys and witnesses; two focus groups with service providers and a state-wide survey of 76 principals, attorneys and witnesses. RESULTS: Across all methods and user groups, understanding the role and obligations of the attorney in an EPA was consistently identified as problematic. CONCLUSIONS: Promoting accountability and understanding can be addressed by greater attention to the role of the attorney in the forms/ guidelines and in the structure and witnessing of the forms, increased direction about record keeping and access to appropriate advice and support.

Models for predicting turnover of residential aged care nurses: a structural equation modelling analysis of secondary data.

BACKGROUND: Nurse turnover in the residential aged care industry is a pressing issue. Researchers have shown ongoing interest in exploring how the factors that are amendable to change in aged care policy, regulation and funding and in organizational procedures (e.g. job demands, coping resources and psychological health of nurses) impact on turnover. However, the findings are mixed. OBJECTIVE: This study tested two theoretical models of turnover to examine the structural relationships among job demands, coping resources, psychological health and turnover of residential aged care nurses. Although many previous studies operationalized turnover as intention to leave, the present study investigated actual turnover by following up with the same individuals over time, and thus provided more accurate predictive models of turnover behaviour. DESIGN AND METHODS: The sample, 239 Australian residential aged care nurses, came from the Nurses and Midwives e-cohort Study. Job demands, coping resources, and psychological health were measured using standardized instruments. Structural equation modelling was used to test the measurement and structural models. RESULTS: Controlling for a number of workforce and individual characteristics, coping resources (measured by job control, supervisor support, and co-worker support) were negatively and directly associated with turnover. Additionally, the findings supported the Job Demand-Control-Support model in that higher coping resources and lower job demands (indicated by psychological demands, physical demands, and effort) were related to better psychological health (measured by vitality, social functioning, role emotional, and mental health), and higher job demands were related to lower coping resources. CONCLUSIONS: Findings suggest that aged care policy makers and service providers might consider increasing coping resources available to nurses and minimizing job demands of care work to reduce turnover and improve nurses' psychological health. Moreover, findings from this Australian study may provide valuable practical and policy implications for other developed countries.

Promoting the use of enduring powers of attorney in older adults: a literature review.

This review aims to identify factors that facilitate the establishment of enduring powers of attorney (EPOAs), and those that create a barrier to their establishment. The primary aim was to provide guidance about how to encourage future planning while people are cognitively able to make such important decisions. A detailed search of the literature was conducted to identify research looking at the motivating factors behind putting future-planning strategies in place. The literature highlighted a number of broad areas motivating the establishment of EPOAs, including: demographic factors; intrapersonal and personality factors; health and psychological factors; cognitive factors; and socio-emotional factors. While a number of factors play a role in determining whether or not a person establishes an EPOA, the factor most malleable to change is the awareness and knowledge of older adults and their families regarding the utility of EPOAs.