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.

Stakeholder perspective on barrier to the implementation of Advance Care Planning in a traditionally paternalistic healthcare system.

BACKGROUND: Advance psychiatric agreements could guide medical teams in providing care consistent with the incapacitated service user's wishes. However, these types of agreements are rarely completed in Asian settings. What challenges can a traditionally paternalistic healthcare system expect to encounter when attempting to implement psychiatric advance directives? METHODS: We answered this research question by exploring the cultural, administrative and logistical challenges that might impede the implementation of the system supporting the service. We interviewed key stakeholders, 28 service users and 22 service providers, to seek their views and interests in the implementation of directives. We structured our analyses along a literature-review-based framework designed to guide further implementation studies, proposed by Nicaise and colleagues (2013). Accordingly, we divided our inductively generated themes into four longitudinal categories: pre-development stage, development stage, implementation stage, post-implementation stage. RESULTS: Overall, the findings indicated that many service users and service providers are interested in advance care planning. They believed that foreseeable challenges could be overcome with appropriate measures. However, the multiple challenges of implementation led some service providers to be ambivalent about their implementation and led service users to dismiss them. Specifically, factors related to the local culture in Singapore necessitated adjustments to the content and structure of the directives. These include language barriers in a multicultural society, conflicting wishes in a collectivist society, taboos for speaking about undesirable outcomes in a traditionalist society, and time limitations in a fast-paced society. CONCLUSION: While culture-specific changes may be required to enable service users in a small Asian country to employ existing advance psychiatric agreement approaches, service providers and service users see their benefits. However, service providers must be mindful not to assume that service users are willing to defer every decision to their physician.

Advance directive preferences of patients with chronic and terminal illness towards end of life decisions: a sample from Saudi Arabia.

BACKGROUND: Advance directives towards end of life decisions are seldom used among Arabs. AIMS: This study aimed at investigating advance care preferences among a sample of Arab patients. METHOD: This cross-sectional study was undertaken over the period March 2012-March 2013 on a sample of 300 patients with chronic illness in King Fahad National Guard Hospital, Riyadh, a major tertiary care hospital in Saudi Arabia. RESULTS: Mean age of patients in the study was 48.7 years (standard deviation 16.4). There were 104 patients on haemodialysis, 73 with advanced malignancy, 81 with chronic liver disease and 35 with chronic respiratory disease. More than 80% of the respondents felt that the physician should make the decision about cardiopulmonary resuscitation. Over 60% wished to remain at home when their condition deteriorated to impending death. There were no significant correlations between the patients' end of life decision preferences and religiosity, quality of life, disease duration, or other demographic characteristics. CONCLUSION: Despite a significant lack of knowledge among our participants regarding resuscitation, a majority of patients with chronic illness were willing to discuss the options and were capable of making advance directive plans regarding their health status.

Culturally Acceptable Advance Care Planning and Advance Directives for Persons Experiencing Homelessness.

Although the process of dying is a universal human experience, it often magnifies individuals' unique cultural differences. Persons experiencing homelessness (PEHs) have unique barriers, challenges, and wishes for end-of-life care. There is insufficient evidence about how to provide culturally congruent advance care planning (ACP) through advance directive (AD) completion for PEHs. This study addressed this knowledge gap, and its findings serve as the basis for developing additional strategies to promote a satisfying ACP experience for this population when they complete an AD. The purpose of this study was to discover if an AD form recreated for PEHs would positively affect their completion of the AD as well as their overall experience with ACP. Guided by the culture care theory and qualitative ethnonursing methodology, 38 individuals (30 PEHs and 8 student nurses) were interviewed. Data were analyzed using the 4 phases of ethnonursing analysis. The 3 themes abstracted were (1) "it needs to be done," (2) the presence or absence of trusted family support, and (3) ACP for PEHs is facilitated by an AD workshop. Nursing interventions based on study findings can be used to help promote a dignified, meaningful ACP experience for vulnerable populations.

Patients' Perspectives on Approaches to Facilitate Completion of Advance Directives.

BACKGROUND: Little is understood about the different ways patients complete advance directives (ADs), which is most commonly through lawyers and increasingly using websites. OBJECTIVE: To understand patients' perspectives on different approaches to facilitating AD completion, the value of legal regulation of ADs, and the use of a web-based platform to create an AD. DESIGN: Semi-structured interviews with patients. SETTING/PARTICIPANTS: We purposively sampled 25 patients at least 70 years of age or with a chronic disease from 2 internal medicine clinics. MEASUREMENTS: Interviews focused on experiences and perspectives creating ADs, including facilitation by lawyers, health-care professionals, and websites. Feedback on a website prototype was also obtained. Responses were analyzed with modified grounded theory until thematic saturation was achieved. RESULTS: Although a majority of participants with ADs had used lawyers, participants were ambivalent about the benefits of lawyer facilitation. Most valued both the medical perspective of a health-care professional and a lawyer's attention to legal requirements for AD validity. Participants had positive impressions of the web platform, but some were concerned about privacy with online storage. Trust emerged as an overarching theme, and participants valued legal regulation of ADs to ensure document authenticity and delivery of preference-concordant care. CONCLUSION: Efforts to improve documentation of care planning need to address the disparate methods by which participants complete ADs. Creating options that combine the perceived benefits of a legal approach with greater health professional involvement could appeal to participants. Privacy concerns may limit web use by some patients.

Personalizing Patients' Advance Directives Decreases the Willingness of Intensive Care Unit Residents to Stop Treatment: A Randomized Study.

BACKGROUND: While following patients' advance directives (ADs) is legally binding, French physicians in Intensive Care Unit (ICU) perceive them as complicating their decision. Decision making and ICU residents benefit from personalizing the dying process. In France, ADs can include personal information. OBJECTIVE: Whether personalizing ADs affects ICU residents' decisions and perception of the patient. SUBJECTS AND DESIGN: Sixty-six ICU residents assigned to three experimental groups and presented with a case file for an ICU patient. The files were identical except for the patient's AD, which was manipulated to give three conditions: No Personal Information, Sociodemographic Information, and Agency Information (ability to plan and act upon the world). MEASUREMENTS: Residents evaluated the relevance of the AD, assessed its influence on medical decisions, and decided whether to stop treatment, postpone the decision, or consult the family. Finally, they evaluated the patient with respect to two dimensions of personhood (agency and experience). RESULTS: Residents in all conditions considered the AD to be highly relevant and influential. Residents in both Information conditions perceived the patient as having more capacities for agency and for experience than those in the No Information condition. They were also less likely to stop treatment and more likely to postpone their decision. Consulting the family was not sensitive to the information condition. CONCLUSION: Personalizing ADs of an unknown patient leads ICU residents to be less prone to follow them, but does not affect whether or not they decide to consult the patient's family. Hence, promoting shared decision making by including the incapacitated patients' families in treatment decisions is a major challenge, especially in countries such as France, where ADs are legally binding.

A Randomized Controlled Trial of Strategies to Improve Family Members' Preparedness for Surrogate Decision-Making.

OBJECTIVE: To evaluate 2 strategies for preparing family members for surrogate decision-making. DESIGN: A 2 × 2 factorial, randomized controlled trial testing whether: (1) comprehensive online advance care planning (ACP) is superior to basic ACP, and (2) having patients engage in ACP together with family members is superior to ACP done by patients alone. SETTING: Tertiary care centers in Hershey, Pennsylvania, and Boston, Massachusetts. PARTICIPANTS: Dyads of patients with advanced, severe illness (mean age 64; 46% female; 72% white) and family members who would be their surrogate decision-makers (mean age 56; 75% female; 75% white). INTERVENTIONS: Basic ACP: state-approved online advance directive plus brochure. Making Your Wishes Known (MYWK): Comprehensive ACP decision aid including education and values clarification. MEASUREMENTS: Pre-post changes in family member self-efficacy (100-point scale) and postintervention concordance between patients and family members using clinical vignettes. RESULTS: A total 285 dyads enrolled; 267 patients and 267 family members completed measures. Baseline self-efficacy in both MYWK and basic ACP groups was high (90.2 and 90.1, respectively), and increased postintervention to 92.1 for MYWK ( P = .13) and 93.3 for basic ACP ( P = .004), with no between-group difference. Baseline self-efficacy in alone and together groups was also high (90.2 and 90.1, respectively), and increased to 92.6 for alone ( P = .03) and 92.8 for together ( P = .03), with no between-group difference. Overall adjusted concordance was higher in MYWK compared to basic ACP (85.2% vs 79.7%; P = .032), with no between-group difference. CONCLUSION: The disconnect between confidence and performance raises questions about how to prepare family members to be surrogate decision-makers.

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences.

BACKGROUND: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. AIM: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). DESIGN: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. SETTING/PARTICIPANTS: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. RESULTS: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants' multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. CONCLUSION: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

The ideas about advanced life support and affecting factors at the end-stage of life in a hospital in Turkey.

BACKGROUND: The participation of the people in health decisions may be structured in various levels. One of these is participation in decisions for the treatment. "Advanced directives" is one of the examples for the participation in decisions for the treatment. AIM: We wanted to determine the decisions on advanced life support at the end-stage of life in case of a life-threatening illness for the people themselves and their first degree relatives and the factors effecting these decisions. DESIGN AND SETTING: The cross-sectional study was conducted with volunteers among patients and patient relatives who applied to all polyclinics of the Ankara Numune Training and Research Hospital except the emergency, oncology and psychiatry polyclinics between 15.12.2012 and 15.03.2013. METHOD: A questionnaire, the Hospital Anxiety Depression (HAD) scale, and Templer's Death Anxiety Scale (TDA) were applied to all individuals. SPSS for Win. Ver. 17.0 and MS-Excel 2010 Starter software bundles were used for all statistical analysis and calculations. RESULTS: The participants want both themselves and their first degree relatives included in end-stage decision-making process. Therefore, the patients and their families should be informed adequately during decision making process and quality communication must be provided. CONCLUSION: Participants who have given their end-stage decisions previously want to be treated according to these decisions. This desire can just be possible by advanced directives.When moral and material loads of end-stage process are taken into consideration, countries, in which advanced directives are practiced, should be examined well and participants' desire should be evaluated in terms of practicability.

Do Advance Directives Direct?

Resolution of long-standing debates about the role and impact of advance directives - living wills and powers of attorney for health care - has been hampered by a dearth of appropriate data, in particular data that compare the process and outcomes of end-of-life decision making on behalf of patients with and without advance directives. Drawing on a large ethnographic study of patients in two intensive care units in a large urban teaching hospital, this article compares aspects of the medical decision-making process and outcomes by advance-directive status. Controlling for demographic characteristics and severity of illness, the study finds few significant differences between patients without advance directives and those who claim to have them. Surprisingly, these few differences hold only for those whose directives are in their hospital chart. There are no significant differences between those with no directive and those claiming to have a copy at home or elsewhere. The article considers the implications if directives seemingly must be in hand to show even modest effects. Do advance directives direct? The intensive care unit data provide far more support for the growing body of literature that casts doubt on their impact than studies that promote the use of them.

Development of a post-intensive care unit storytelling intervention for surrogates involved in decisions to limit life-sustaining treatment.

OBJECTIVE: Surrogates involved in decisions to limit life-sustaining treatment for a loved one in the intensive care unit (ICU) are at increased risk for adverse psychological outcomes that can last for months to years after the ICU experience. Post-ICU interventions to reduce surrogate distress have not yet been developed. We sought to (1) describe a conceptual framework underlying the beneficial mental health effects of storytelling, and (2) present formative work developing a storytelling intervention to reduce distress for recently bereaved surrogates. METHOD: An interdisciplinary team conceived the idea for a storytelling intervention based on evidence from narrative theory that storytelling reduces distress from traumatic events through emotional disclosure, cognitive processing, and social connection. We developed an initial storytelling guide based on this theory and the clinical perspectives of team members. We then conducted a case series with recently bereaved surrogates to iteratively test and modify the guide. RESULTS: The storytelling guide covered three key domains of the surrogate's experience of the patient's illness and death: antecedents, ICU experience, and aftermath. The facilitator focused on the parts of a story that appeared to generate strong emotions and used nonjudgmental statements to attend to these emotions. Between September 2012 and May 2013, we identified 28 eligible surrogates from a medical ICU and consented 20 for medical record review and recontact; 10 became eligible, of whom 6 consented and completed the storytelling intervention. The single-session storytelling intervention lasted from 40 to 92 minutes. All storytelling participants endorsed the intervention as acceptable, and five of six reported it as helpful. SIGNIFICANCE OF RESULTS: Surrogate storytelling is an innovative and acceptable post-ICU intervention for recently bereaved surrogates and should be evaluated further.

Pediatric advance directives: parents' knowledge, experience, and preferences.

OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics. RESULTS: Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. CONCLUSIONS: The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care.

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.

Factors that affect decisions to receive (or not receive) life-sustaining treatment in advance care planning.

This study identifies factors that affect decisions people make regarding whether they want to receive life-sustaining treatment. It is an interpretive-descriptive study based on qualitative data from three focus groups (N = 23), representing a diverse population in central Pennsylvania. Study sites included a suburban senior center serving a primarily White, middle-class population; an urban senior center serving a frail, underserved, African American population; and a breast cancer support group. The most important factors affecting whether participants wished to receive life-sustaining medical treatment were prognosis, expected quality of life, burden to others, burden to oneself in terms of the medical condition and treatment, and effect on mental functioning and independence. Our findings contribute to the knowledge of the complex factors that influence how people make decisions about advance care planning and life-sustaining treatments. This understanding is critical if nurses are to translate the patient's goals, values, and preferences into an actionable medical plan.

The process of advance care planning in HCT candidates and proxies: self-efficacy, locus of control, and anxiety levels.

The purpose of this study was to examine the relationship between hematopoietic cell transplant candidate and proxy advance care planning (ACP) behavior and attitudes. A total of 49 candidates and 44 proxies completed the Advance Directive Attitudes Survey, Multidimensional Health Locus of Control Scale, Family Decision Making Self-Efficacy Scale, and the State-Trait Anxiety Inventory. In all, 45% of candidates reported completing an advance directive (AD), while only 26% had ADs on file; 80% of candidates discussed ACP wishes with their loved ones and 15% discussed ACP wishes with their medical team. The AD completers were significantly (1) older, (2) more positive about ADs, and (3) were less likely to believe that health events happen by chance. Discrepancies between reported ACP behavior and communication with health care practitioners have implications for end-of-life care.

Advance directives in the context of end-of-life palliative care.

PURPOSE OF REVIEW: To review the definition of advanced directive, understand the implications for the patient, family and healthcare team, and address the obstacles involved in the implementation. RECENT FINDINGS: Advanced directives propose a model of healthcare based on patient preferences. Although there is sufficient evidence related to their usefulness, various factors are known to affect the use of advanced directives. Therefore, rules need to be established in order to optimize the implementation process. SUMMARY: An advanced directive is a legal document based on the principle of autonomy that expresses the desire of the patient in relation to different medical treatments when the patient is unable to make those decisions. The advanced directives are represented in three formats: Living Will, Appointment of a Healthcare Proxy and Legal Status of Preferences. The uses of advanced directives have an impact not only on the patients and their families, but also on the healthcare team. Despite their utility being well known, there are several general barriers that affect implementation, as well as factors related to characteristics of each study population.

The effect of emotion and physician communication behaviors on surrogates' life-sustaining treatment decisions: a randomized simulation experiment.

OBJECTIVE: Surrogate decision makers for critically ill patients experience strong negative emotional states. Emotions influence risk perception, risk preferences, and decision making. We sought to explore the effect of emotional state and physician communication behaviors on surrogates' life-sustaining treatment decisions. DESIGN: 5 × 2 between-subject randomized factorial experiment. SETTING: Web-based simulated interactive video meeting with an intensivist to discuss code status. SUBJECTS: Community-based participants 35 and older who self-identified as the surrogate for a parent or spouse recruited from eight U.S. cities through public advertisements. INTERVENTIONS: Block random assignment to emotion arousal manipulation and each of the four physician communication behaviors. MEASUREMENTS AND MAIN RESULTS: Surrogate's code status decision (cardiopulmonary resuscitation vs do not resuscitate/allow natural death). Two hundred fifty-six of 373 respondents (69%) logged-in and were randomized: average age was 50; 70% were surrogates for a parent; 63.5% were women; 76% were white, 11% black, and 9% Asian; and 81% were college educated. When asked about code status, 56% chose cardiopulmonary resuscitation. The emotion arousal manipulation increased the score on depression-dejection scale (ß = 1.76 [0.58 - 2.94]) but did not influence cardiopulmonary resuscitation choice. Physician attending to emotion and framing the decision as the patient's rather than the surrogate's did not influence cardiopulmonary resuscitation choice. Framing no cardiopulmonary resuscitation as the norm rather than cardiopulmonary resuscitation resulted in fewer surrogates choosing cardiopulmonary resuscitation (48% vs 64%, odds ratio, 0.52 [95% CI, 0.32-0.87]), as did framing the alternative to cardiopulmonary resuscitation as "allow natural death" rather than do not resuscitate (49% vs 61%, odds ratio, 0.58 [95% CI, 0.35-0.96]). CONCLUSIONS: Experimentally induced emotional state did not influence code status decisions, although small changes in physician communication behaviors substantially influenced this decision.