Advance directives in amyotrophic lateral sclerosis - a systematic review and meta-analysis.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease of the upper and lower motoneuron. It is associated with a life expectancy of 2-4 years after diagnosis. Individuals experience paralysis, dysphagia, respiratory failure and loss of communicative function, rendering advance care planning (ACP) critically important. This systematic review primarily aimed to internationally compare the application of advance directives (AD) and ACP in ALS. Its secondary aim was to identify ACP preferences, identify fields for future research and to generate recommendations for improving patient care through ACP. METHODS: We conducted a systematic literature review and meta-analysis. Five electronic databases (Embase, Medline, Scopus, PsycInfo and CENTRAL) were searched for qualitative and quantitative primary literature from 1999 to 2024. Cross-references were used to identify additional publications. Study selection was performed based on inclusion criteria. Number and content of AD were extracted systematically. After statistical analysis consecutive meta-analysis was performed for international differences and changes over time. Quality assessment of studies was performed using the MMAT (Mixed Methods Appraisal Tool). PROSPERO Registration (June 07, 2021) : CRD42021248040. RESULTS: A total of 998 records was screened of which 26 were included in the synthesis. An increase in publication numbers of 88.9% was observed from 1999 to 2024. Results regarding use and content of AD were heterogeneous and international differences were detected. AD were signed in 60.4% of records (1,629 / 2,696 patients). The number of AD decreased over time when separating the review period in two decades (1st 1999-2011: 78% vs. 2nd 2012-2024: 42%). Study quality was superior in qualitative and mixed method designs compared to quantitative studies. CONCLUSION: Further prospective studies should include detailed analyses on preferences regarding ventilation and artificial nutrition in ALS and should encompass countries of the global south. Despite the complexity of ACP with regard to individual patient needs, ACP should be part of each individual support plan for ALS patients and should specifically comprise a discussion on the preferred place of death. The available disease-specific AD documents should be preferred.

Advance Directives Change Frequently in Nursing Home Residents.

OBJECTIVES: To describe the rate, timing, and pattern of changes in advance directives (ADs) of do not resuscitate (DNR) and do not hospitalize (DNH) orders among new admissions to nursing homes (NHs). DESIGN: A retrospective cohort study. SETTING AND PARTICIPANTS: Admissions to all publicly funded NHs in Ontario, Canada, between January 1, 2013, and December 31, 2017. METHODS: Residents were followed until discharged from incident NH stay, death, or were still present at the end of study (December 31, 2019). They were categorized into 3 mutually exclusive baseline composite AD groups: Full Code, DNR Only, and DNR+DNH. We used Poisson regression models to estimate the incidence rate ratios of AD change between different AD groups and different decision makers for personal care, adjusted for baseline clinical and sociodemographic variables. RESULTS: A total of 102,541 NH residents were eligible for inclusion. Residents with at least 1 AD change accounted for 46% of Full Code, 30% of DNR Only, and 25% of DNR+DNH group. Median time to first AD change ranged between 26 and 55 weeks. For Full Code and DNR Only residents, the most frequent change was to an AD 1 level lower in aggressiveness or intervention, whereas for DNR+DNH residents the most frequent change was to DNR Only. About 16% of residents had 2 or more AD changes during their stay. After controlling for covariates, residents with a DNR-only order or DNR+DNH orders at admission and those with a surrogate decision maker were associated with lower AD change rates. CONCLUSIONS AND IMPLICATIONS: Measuring AD adherence rates that are documented only at a particular time often underestimates the dynamics of AD changes during a resident's stay and results in an inaccurate measure of the effectiveness of AD on resident care. There should be more frequent reviews of ADs as they are quite dynamic. Mandatory review after an acute change in a resident's health would ensure that ADs are current.

Association Between Patient Portal Activities and End-of-Life Outcomes Among Deceased Patients in the Last 12 Months of Life.

Objective: The objective of this study was to examine the association between portal use and end-of-life (EOL) outcomes in the last year of life. Methods: A retrospective cohort (n = 6,517) study at Kaiser Permanente Colorado among adults with serious illness deceased between January 1, 2016, and June 30, 2019. Portal use was categorized into engagement types: no use, nonactive, active without a provider, and active with a provider. EOL outcomes were hospitalizations in the month before death, last-year advance directive completion, and hospice use. Association between EOL outcomes and levels of portal use was assessed using χ2 statistics and generalized linear models. Results: Higher portal engagement types were associated with higher rates of hospitalizations (p = 0.0492), advance directive completion (p = 0.0226), and hospice use (p = 0.0070). Conclusion: Portal use in the last year of life was associated with increases in a poor EOL outcome, hospitalizations, and beneficial EOL outcomes, advance directives, and hospice care.

Achieving goal-concordant care: Formal and informal advance care planning for White, Black, and Hispanic older adults.

INTRODUCTION: Advance care planning (ACP) aims to ensure that patients receive goal-concordant care (GCC), which is especially important for racially or ethnically minoritized populations at greater risk of poor end-of-life outcomes. However, few studies have evaluated the impact of advance directives (i.e., formal ACP) or goals-of-care conversations (i.e., informal ACP) on such care. This study aimed to examine the relationship between each of formal and informal ACP and goal-concordant end-of-life care among older Americans and to determine whether their impact differed between individuals identified as White, Black, or Hispanic. METHODS: We conducted a retrospective cohort study using 2012-2018 data from the biennial Health and Retirement Study. We examined the relationships of interest using two, separate multivariable logistic regression models. Model 1 regressed a proxy report of GCC on formal and informal ACP and sociodemographic and health-related covariates. Model 2 added interaction terms between race/ethnicity and the two types of ACP. RESULTS: Our sample included 2048 older adults. There were differences in the proportions of White, Black, and Hispanic decedents who received GCC (83.1%, 75.3%, and 71.3%, respectively, p < 0.001) and in the use of each type of ACP by racial/ethnic group. In model 1, informal compared with no informal ACP was associated with higher odds of GCC (adjusted odds ratio = 1.38 [95% confidence interval, 1.05-1.82]). In model 2, Black decedents who had formal ACP were more likely to receive GCC than those who did not, but there were no statistically significant differences between decedents of different racial/ethnic groups who had no ACP, informal ACP only, or both types of ACP. CONCLUSIONS: Our results build on previous work by indicating the importance of incorporating goals-of-care conversations into routine healthcare for older adults and encouraging ACP usage among racially and ethnically minoritized populations who use ACP tools at lower rates.

Advance directives in the emergency department-a systematic review of the status quo.

BACKGROUND: Providing individualised healthcare in line with patient wishes is a particular challenge for emergency healthcare professionals. Documentation of patient wishes (DPW), e.g. as advance directives, can guide clinicians in making end-of-life decisions that respect the patient's wishes and autonomy. However, patient centered decisions are hindered by limited availability of DPWs in emergency settings. OBJECTIVE: This systematic review aims to congregate present data on recorded rates for DPW existence and availability in the emergency department (ED) as well as contributing factors for these rates. METHODS: We searched MEDLINE, Google Scholar, Embase and Web of Science databases in September 2023. Publications providing primary quantitative data on DPW in the ED were assessed. Publications referring only to a subset of ED patients (other than geriatric) and investigating DPW issued after admission were excluded. RESULTS: A total of 22 studies from 1996 to 2021 were included in the analysis. Most were from the US (n = 12), followed by Australia (n = 4), Canada (n = 2), South Korea, Germany, the United Kingdom and Switzerland (n = 1 each). In the general adult population presenting to the ED, 19.9-27.8% of patients reported having some form of DPW, but only in 6.8% or less it was available on presentation. In the geriatric population, DPW rates (2.6-79%) as well as their availability (1.1-48.8%) varied widely. The following variables were identified as positive predictors of having DPW, among others: higher age, poorer overall health, as well as sociodemographic factors, such as female gender, having children, being in a relationship, higher level of education or a recent previous presentation to hospital. CONCLUSIONS: Existence and availability of a recorded DPW among ED patients was low in general and even in geriatric populations mostly well below 50%. While we were able to gather data on prevalence and predictors, this was limited by heterogeneous data. We believe further research is needed to explore the quality of DPW and measures to increase both rates of existence and availability of DPW in the ED.

Stability of End-of-Life Care Wishes and Gender-Specific Characteristics of Outpatients with Advanced Cancer under Palliative Therapy: A Prospective Observational Study.

INTRODUCTION: Early integration of palliative care and advance care planning (ACP) play an increasingly important role in the treatment of patients with advanced cancer. Advance directives (ADs) and patients' preferences regarding end-of-life (EoL) care are important aspects of ACP. In the outpatient setting, the prevalence of those documents and EoL care wishes is not well investigated, and changes in the longitudinal course are poorly understood. METHODS: From June 2020 to August 2022, 67 outpatients with advanced solid tumors undergoing palliative cancer therapy were interviewed on the topic of ACP in a longitudinal course. From this database, the prevalence of ADs, healthcare proxy, EoL care wishes, and the need for counseling regarding these issues were collected. In addition, EoL care wishes were examined for their stability. RESULTS: Fifty-one patients (76.1%) reported having ADs, and 41 patients (61.2%) reported having a healthcare proxy. Nineteen patients (37.3%) with ADs and 11 patients (68.7%) without ADs indicated a wish for counseling. Reported EoL care wishes remained stable over a period of approximately 6 months. Nevertheless, intraindividual changes occurred over time within the different EoL care preferences. The desire for resuscitation and dialysis were significantly higher in men than in women (resuscitation: 15 of 21 men [71.4%] versus 9 of 22 women [40.9%], odds ratio [OR] 3.611, 95% confidence interval [CI], 1.01-12.89, p = 0.048; dialysis: 16 of the 23 men [69.6%] versus 9 of the 25 women [36.0%], OR: 4.063, 95% CI: 1.22-13.58, p = 0.023). CONCLUSION: Our results show a reasonably high percentage of ADs and healthcare proxies in our study cohort. The observed stability of EoL requests encourages the implementation of structured queries for ADs and healthcare proxy for outpatients undergoing palliative treatment. Our data suggest that gender-specific characteristics should be further investigated in this context.

Resuscitation (un-)wanted: Does anyone care? A retrospective real data analysis.

BACKGROUND AND OBJECTIVES: In case of out-of-hospital cardiac arrest (OHCA) personnel of the emergency medical services (EMS) are regularly confronted with advanced directives (AD) and do-not-attempt-resuscitation (DNACPR) orders. The authors conducted a retrospective analysis of EMS operation protocols to examine the prevalence of DNACPR in case of OHCA and the influence of a presented DNACPR on CPR-duration, performed Advanced-Life-Support (ALS) measures and decision making. MATERIALS AND METHODS: Retrospective analysis of prehospital medical documentation of all resuscitation incidents in a German county with 250,000 inhabitants from 1 January 2016 to 31 December 2022. Combined with data from the structured CPR team-feedback database patients characteristics, measures and course of the CPR were analysed. Statistic testing with significance level p < 0.05. RESULTS: In total n = 1,474 CPR events were analysed. Patients with DNACPR vs. no DNACPR: n = 263 (17.8%) vs. n = 1,211 (82.2%). Age: 80.0 ± 10.3 years vs. 68.0 ± 13.9 years; p < 0.001. Patients with ASA-status III/IV: n = 214 (81.3%) vs. n = 616 (50.9%); p < 0.001. Initial layperson-CPR: n = 148 (56.3%) vs. n = 647 (55.7%); p = 0.40. Airway management: n = 185 (70.3%) vs. n = 1,069 (88.3%); p < 0.001. With DNACPR CPR-duration initiated layperson-CPR vs. no layperson-CPR: 19:14 min (10:43-25:55 min) vs. 12:40 min (06:35-20:03 min); p < 0.001. CONCLUSION: In case of CPR EMS-personnel are often confronted with DNACPR-orders. Patients are older and have more previous diseases than patients without DNACPR. Initiated layperson-CPR might lead to misinterpretation of patients will with impact on CPR-duration and unwanted measures. Awareness of this issue should be created through measures such as training programs in particular to train staff in the interpretation and legal admissibility of ADs.

A Survey of State Correctional Health Care Providers on Advance Care Planning: Opportunity for Collaboration With Corrections.

Prison populations are rapidly aging. Persons in prison age quicker and suffer more chronic illness and disability than their nonincarcerated peers, posing challenges to caring for prisoners who are chronically ill and dying. The goal of our study was to describe state prisons' practices and policies addressing persons in prison with advanced chronic and life limiting illness through a national web-based survey of state-level prison health care professionals. In particular, we focused on advanced care planning, use of health care directives, decision-making about goals of care, including life sustaining treatments, The response rate was 22% for a sample size 152 completed surveys. The average age of respondent was 52 years; majority were female and Caucasian, and had worked in corrections more than 8 years. Nearly half were registered nurses. Most reported their prison did not have a dedicated end-of-life care program and only 11% offered a peer-care program. However, two-thirds indicated their facility provided the opportunity to designate a health care agent with physicians most likely responsible for facilitating completion of a health care directive. It is evident the care of persons aging and dying in prison is complex and requires further investigation addressing staff and prison population education, ethics guidelines for care, compassionate release, and advance care planning. This study suggests that hospice and palliative care professionals could collaborate with corrections professionals and national organizations to provide innovative education and support to enhance the humane care of this vulnerable population.

Examining emergency departments practices on advance care directives and medical treatment decision making using the victorian emergency minimum dataset.

INTRODUCTION: Existence of Advance Care Planning (ACP) documents including contact details of Medical Treatment Decision Makers (MTDM), are essential patient care records that support Emergency Department (ED) clinicians in implementing treatment concordant with patients' expressed wishes. Based upon previous findings, we conducted a statewide study to evaluate the performance of Victorian public hospital emergency departments on reporting of availability of records for ACP. METHOD: The study is a quantitative retrospective observational comparative design based upon ED tier levels as defined by the Australasian College for Emergency Medicine (ACEM) for the calendar year 2021. RESULTS: Of 1.8 million total Victorian ED attendances, 15,222 patients had an ACP alert status recorded. Of these, 7296 were aged ≥ 65 years (study group). Of the thirty-one public EDs that submitted data, 65 % were accredited and assigned a level of service tier. The presence of ACP alerts positively correlated to location, tier level, age and gender (MANOVA wilk's; p < 0.001, value=.981, F = (12, 15,300), partial ƞ2 = .006, observed power = 1.0 = 95.919). CONCLUSION: The identified rate of ACP reporting is low. Strategies to improve the result include synchronising ACP (generated at different points) electronically, staff education, training and further validation of the data at the sending and receiving agencies.

How Engaged in Legal Planning for Incapacity and Death Are Canadians? A Mixed-Methods Survey.

Background: This study aimed to measure the level of involvement of Canadians in preparing for incapacity and death and to explore facilitators and barriers. Method: The authors used an online survey based on the social cognitive theory and the Stages of Change model. Result: One-hundred and forty-eight participants took part. The main facilitators were avoiding burdening others and reducing conflicts. Some respondents thought legal planning did not apply to young and healthy people. Some did not trust lawyers. Conclusion: The authors suggest that more people would trust lawyers if they knew the limits of legal documents and if they worked with medical experts.

The influence of POLST on treatment intensity at the end of life: A systematic review.

BACKGROUND: Despite its widespread implementation, it is unclear whether Physician Orders for Life-Sustaining Treatment (POLST) are safe and improve the delivery of care that patients desire. We sought to systematically review the influence of POLST on treatment intensity among patients with serious illness and/or frailty. METHODS: We performed a systematic review of POLST and similar programs using MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, Cochrane Database for Systematic Reviews, and PsycINFO, from inception through February 28, 2020. We included adults with serious illness and/or frailty with life expectancy <1 year. Primary outcomes included place of death and receipt of high-intensity treatment (i.e., hospitalization in the last 30- and 90-days of life, ICU admission in the last 30-days of life, and number of care setting transitions in last week of life). RESULTS: Among 104,554 patients across 20 observational studies, 27,090 had POLST. No randomized controlled trials were identified. The mean age of POLST users was 78.7 years, 55.3% were female, and 93.0% were white. The majority of POLST users (55.3%) had orders for comfort measures only. Most studies showed that, compared to full treatment orders on POLST, treatment limitations were associated with decreased in-hospital death and receipt of high-intensity treatment, particularly in pre-hospital settings. However, in the acute care setting, a sizable number of patients likely received POLST-discordant care. The overall strength of evidence was moderate based on eight retrospective cohort studies of good quality that showed a consistent, similar direction of outcomes with moderate-to-large effect sizes. CONCLUSION: We found moderate strength of evidence that treatment limitations on POLST may reduce treatment intensity among patients with serious illness. However, the evidence base is limited and demonstrates potential unintended consequences of POLST. We identify several important knowledge gaps that should be addressed to help maximize benefits and minimize risks of POLST.

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.

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.

Advance Directives State Requirements, Center Practices, and Participant Prevalence in Adult Day Services Centers: Findings From the 2016 National Study of Long-Term Care Providers.

OBJECTIVES: Adult day services centers (ADSCs) may serve as an entrée to advance care planning. This study examined state requirements for ADSCs to provide advance directives (ADs) information to ADSC participants, ADSCs' awareness of requirements, ADSCs' practice of providing AD information, and their associations with the percentage of participants with ADs. METHODS: Using the 2016 National Study of Long-Term Care Providers, analyses included 3,305 ADSCs that documented ADs in participants' files. Bivariate and linear regression analyses were conducted. RESULTS: Nine states had a requirement to provide AD information. About 80.8% of ADSCs provided AD information and 41.3% of participants had documented ADs. There were significant associations between state requirements, awareness, and providing information with AD prevalence. State requirement was mediated by awareness. DISCUSSION: This study found many ADSCs provided AD information, and ADSCs that thought their state had a requirement and provided information was associated with AD prevalence, regardless of state requirements.

Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review.

BACKGROUND/OBJECTIVES: Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify promising interventions and outcomes. DESIGN: Scoping review. MEASUREMENTS: We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for ACP randomized controlled trials from January 1, 2010, to March 3, 2020. We used standardized Preferred Reporting Items for Systematic Review and Meta-Analyses methods to chart study characteristics, including a standardized ACP Outcome Framework: Process (e.g., readiness), Action (e.g., communication), Quality of Care (e.g., satisfaction), Health Status (e.g., anxiety), and Healthcare Utilization. Differences between arms of P < .05 were deemed positive. RESULTS: Of 1,464 articles, 69 met eligibility; 94% were rated high quality. There were variable definitions, age criteria (≥18 to ≥80 years), diseases (e.g., dementia and cancer), and settings (e.g., outpatient and inpatient). Interventions included facilitated discussions (42%), video only (20%), interactive, multimedia (17%), written only (12%), and clinician training (9%). For written only, 75% of primary outcomes were positive, as were 69% for multimedia programs; 67% for facilitated discussions, 59% for video only, and 57% for clinician training. Overall, 72% of Process and 86% of Action outcomes were positive. For Quality of Care, 88% of outcomes were positive for patient-surrogate/clinician congruence, 100% for patients/surrogate/clinician satisfaction with communication, and 75% for surrogate satisfaction with patients' care, but not for goal concordance. For Health Status outcomes, 100% were positive for reducing surrogate/clinician distress, but not for patient quality of life. Healthcare Utilization data were mixed. CONCLUSION: ACP is complex, and trial characteristics were heterogeneous. Outcomes for all ACP interventions were predominantly positive, as were Process and Action outcomes. Although some Quality of Care and Health Status outcomes were mixed, increased patient/surrogate satisfaction with communication and care and decreased surrogate/clinician distress were positive. Further research is needed to appropriately tailor interventions and outcomes for local contexts, set appropriate expectations of ACP outcomes, and standardize across studies.

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.

Changes in Advance Care Planning for Nursing Home Residents During the COVID-19 Pandemic.

OBJECTIVE: Describe the care preference changes among nursing home residents receiving proactive Advance Care Planning (ACP) conversations from health care practitioners during the COVID-19 pandemic. DESIGN: Retrospective chart review. SETTING AND PARTICIPANTS: Nursing home residents (n = 963) or their surrogate decision makers had at least 1 ACP conversation with a primary health care practitioner between April 1, 2020, and May 30, 2020, and made decisions of any changes in code status and hospitalization preferences. METHODS: Health care practitioners conducted ACP conversations proactively with residents or their surrogate decision makers at 15 nursing homes in a metropolitan area of the southwestern United States between April 1, 2020, and May 30, 2020. ACP conversations reviewed code status and goals of care including Do Not Hospitalize (DNH) care preference. Resident age, gender, code status, and DNH choice before and after the ACP conversations were documented. Descriptive data analyses identified significant changes in resident care preferences before and after ACP conversations. RESULTS: Before the most recent ACP discussion, 361 residents were full code status and the rest were Out of Hospital Do Not Resuscitate (DNR). Of the individuals with Out of Hospital DNR, 188 residents also chose DNH. After the ACP conversation, 88 residents opted to change from full code status to Out of Hospital DNR, thereby increasing the percentage of residents with Out of Hospital DNR from 63% to 72%. Almost half of the residents decided to keep or change to the DNH care option after the ACP conversation. CONCLUSION AND IMPLICATIONS: Proactive ACP conversations during COVID-19 increased DNH from less than a quarter to almost half among the nursing home residents. Out of Hospital DNR increased by 9%. It is important for all health care practitioners to proactively review ACP with nursing home residents and their surrogate decision makers during a pandemic, thereby ensuring care consistent with personal goals of care and avoiding unnecessary hospitalizations.

The Association of Spanish Language Preference with Advance Directive Completion.

BACKGROUND/OBJECTIVES: Hispanics have lower advance directive (AD) completion than non-Hispanic Whites. Few studies have assessed the role of language preference in end-of-life planning. We investigated whether language preference and needing an interpreter affected AD completion among older adults in an integrated health system. DESIGN: Retrospective cohort investigation of electronic medical records. SETTING: Northern California integrated health system. PARTICIPANTS: A total of 620,948 Hispanic and non-Hispanic White patients, aged 55 years and older, between January 1, 2013, and December 31, 2017. MEASUREMENTS: Descriptive statistics and bivariate analysis were performed to compare AD completion among non-Hispanic Whites, Hispanics, and Hispanic subgroups by language preference (English speaking, Spanish speaking, and needed interpreter). We conducted multivariable logistic regression to determine the relationship between language preference and having an AD while controlling for demographic, clinical, and utilization factors. RESULTS: We found 20.3% of non-Hispanic Whites (n = 512,577) and 10.9% of Hispanics (n = 108,371) had completed an AD. Among Hispanics, after controlling for demographic, clinical, and utilization factors, compared with Spanish speakers requiring an interpreter, English speakers had nearly two-fold increased odds of completing an AD (adjusted odds ratio (aOR) = 2.6; 95% confidence interval (CI) = 2.4-2.9), whereas Spanish speakers not requiring an interpreter had 20% increased odds (aOR = 1.2; 95% CI = 1.1-1.3). Additional predictors of successful AD completion were being female, being older, having more comorbidities, having more hospital and emergency department visits, and having higher socioeconomic status. There were no differences associated with primary care provider characteristics. CONCLUSION: These findings indicate the need for a tailored outreach to Hispanics, particularly among those subgroups who require the need of an interpreter, to reduce AD completion disparities.

Impact of advance directives on the variability between intensivists in the decisions to forgo life-sustaining treatment.

BACKGROUND: There is wide variability between intensivists in the decisions to forgo life-sustaining treatment (DFLST). Advance directives (ADs) allow patients to communicate their end-of-life wishes to physicians. We assessed whether ADs reduced variability in DFLSTs between intensivists. METHODS: We conducted a multicenter, prospective, simulation study. Eight patients expressed their wishes in ADs after being informed about DFLSTs by an intensivist-investigator. The participating intensivists answered ten questions about the DFLSTs of each patient in two scenarios, referring to patients' characteristics without ADs (round 1) and then with (round 2). DFLST score ranged from 0 (no-DFLST) to 10 (DFLST for all questions). The main outcome was variability in DFLSTs between intensivists, expressed as relative standard deviation (RSD). RESULTS: A total of 19,680 decisions made by 123 intensivists from 27 ICUs were analyzed. The DFLST score was higher with ADs than without (6.02 95% CI [5.85; 6.19] vs 4.92 95% CI [4.75; 5.10], p < 0.001). High inter-intensivist variability did not change with ADs (RSD: 0.56 (round 1) vs 0.46 (round 2), p = 0.84). Inter-intensivist agreement on DFLSTs was weak with ADs (intra-class correlation coefficient: 0.28). No factor associated with DFLSTs was identified. A qualitative analysis of ADs showed focus on end-of-life wills, unwanted things and fear of pain. CONCLUSIONS: ADs increased the DFLST rate but did not reduce variability between the intensivists. In the decision-making process using ADs, the intensivist's decision took priority. Further research is needed to improve the matching of the physicians' decision with the patient's wishes. Trial registration ClinicalTrials.gov Identifier: NCT03013530. Registered 6 January 2017; https://clinicaltrials.gov/ct2/show/NCT03013530 .