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Objective: Understanding patients' wishes and preferences during hospitalisation is a crucial component of care. We identified a gap related to documentation of advance directives and patient preferences for care and focused on ensuring appropriate goals of care discussions were occurring and documented. Our aim was to improve the documentation of advance care planning notes to include 80% of targeted hospitalised patients., Patients and Methods: Hospitalised patients in two community hospitals were included. We performed serial Plan-Do-Measure-Act cycles. The first intervention introduced the 'surprise question' during an afternoon huddle. Intervention 2 emphasised documentation of the advance care planning note. The third intervention used a structured approach led by administrators at daily multidisciplinary huddles and identified patients with an Elderly Risk Assessment score of 16 or greater as targets for advance care planning documentation., Results: From a baseline performance under 10%, we increased to greater than 80% of patients with Elderly Risk Assessment scores of 16 or higher having documented advance care planning. We were able to sustain this performance over subsequent years., Conclusion: A structured approach that identifies a targeted population at higher risk of mortality, and implementation of a checklist at a daily multidisciplinary huddle provided sustained improvement in advance care planning documentation. This provides the opportunity for improved patient care that is aligned with their values and preferences., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2025. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ Group.)

Background: An advance care plan outlines a patient's wishes regarding medical treatment or goals of care in the case that they become unable to communicate or to make decisions. An advance care directive (ACD) is an advance care plan that has been formally recorded and has legal status. Despite ACDs playing an important role in person-centred end-of-life care, an earlier retrospective medical records audit demonstrated that only 11% (58/531) of people who died due to a terminal illness had an ACD.The aim of this project was to increase the proportion of patients with a terminal illness completing an ACD. A secondary outcome was to measure the impact of ACDs on hospital and intensive care unit (ICU) admissions in the last 6 months of life.This multifaceted project comprised (1) education for health professionals and the public; (2) individual support for patients on request; (3) development of online resources for health professionals and the general public; and (4) monthly team meetings., Method: The proportion of ACDs completed and hospital and ICU admissions during the last 6 months of life, were extracted via medical record audits.Written consent was required for patients to participate, including being contacted by the project team and accessing their medical records., Results: 112 patients consented to participate in the project and 109 (97%) completed an ACD. There was no reduction in the average number of hospital admissions, while ICU admissions reduced from 14% (n=74) to 0%., Conclusion: The targeted, multifaceted approach to education and support for completion of ACDs, resulted in a significant increase in ACD completion and a major reduction in ICU admissions., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: To investigate the frequency, content, and clinical translation of advance directives in intensive care units (ICUs)., Material and Methods: Retrospective cohort study in a Swiss tertiary ICU, including patients with advance directives treated in ICUs ≥48 h. The primary endpoint was the violation of directives. Key secondary endpoints were the directives' prevalence and their translation into clinical practice., Results: Of 5'851 patients treated ≥48 h in ICUs, 2.7 % had documented directives. Despite 92 % using templates, subjective or contradictory wording was found in 19 % and 12 %. Nine percent of directives were violated. Patients with directive violations had worse in-hospital outcomes (p = 0.012). At admission, 64 % of patients experiencing violations could not communicate, and directives were missing/unrecognized in 30 %. Mostly, directives were not followed regarding life-prolonging measures (6 %), ICU admission (5 %), and mechanical ventilation (3 %). Kaplan Meier statistics revealed a lower survival rate with directives recognized at admission (p = 0.04) and when treatment was withheld (p < 0.001)., Conclusions: Advance directives are available in a minority of ICU patients and often contain subjective/contradictory wording. Physicians respected directives in 90 % of patients, with treatment adapted following their wishes. However, violation of directives may have serious consequences with unfavorable in-hospital outcomes and decreased long-term survival with treatment adaption following directives., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Introduction: Advance directives (ADs) promote patient autonomy in end-of-life (EOL) care, including an individual's EOL medical treatment preferences. This study aims to better understand preferences regarding EOL medical treatment among community-dwelling adults (18 and older) residing in the United States and examine the association between sociodemographic characteristics and EOL medical treatment preferences., Methods: Utilizing a cross-sectional study and snowball sampling methodology, community-dwelling adults completed a survey containing two different ADs and a questionnaire with sociodemographic information. Univariate analyses were used to summarize EOL medical treatment preferences among the sample, and bivariate analyses (Chi-square and Fisher's Exact tests) were performed to examine the association between sociodemographic characteristics (age, gender, and race/ethnicity) and EOL medical treatment preferences., Results: The mean age of the 166 participants was 50 (SD: 21.65, range: 18-93), with 58.4% being White and 61.4% being female. Generally, when EOL scenarios involved brain damage or a coma, more participants indicated that they did not want life-support treatment. Age and race were both associated with EOL medical treatment preferences, but no significant differences were observed in the bivariate results by gender. Largely, young and middle-aged adults, along with Black participants, were more likely to prefer more aggressive EOL medical treatments than older adults and White participants., Conclusion: Overall, EOL medical treatment preferences varied among participants. The study findings indicate that adults develop different preferences for EOL medical treatment, with some of the variation attributable to sociodemographic characteristics such as age and race., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objective: To measure compliance with Advance Care Directives (ACDs) for decedents in a rural setting., Design: Observational, cross-sectional medical records audit comparing requests in ACDs with actual outcomes., Setting: Rural Australian coastal district., Participants: People who had an ACD, died during the study period (30 May 2020 to 15 December 2021) and participated in a local research project., Main Outcome Measure(s): Compliance was measured by comparing stated requests in the ACD with outcomes recorded in medical records. This included the place of death and a list of 'unacceptable interventions'., Results: Sixty-eight people met the inclusion criteria (age range of 46-92 [mean 67 years; median 74 years]; 42 [62%] male). The main cause of death was cancer (n = 48; 71%). Preferred place of death was not stated in 16 ACDs. Compliance with documented preferred place of death was 63% (33/52): 48% (16/33) when the preferred place of death was home; 78% (7/9) when sub-acute was preferred; and 100% (10/10) when hospital was preferred. Compliance was 100% with 'unacceptable interventions'., Conclusion: These results demonstrate strong compliance with rural patients' requests in ACDs, particularly 'unacceptable interventions'. Home was the most common preferred place of death, but the compliance measure (48%) was the lowest in this study. This requires further exploration., (© 2024 The Author(s). Australian Journal of Rural Health published by John Wiley & Sons Australia, Ltd on behalf of National Rural Health Alliance Ltd.)

Introduction: Advance Care Planning (ACP) refers to a process that includes Advance Care Directives (ACD) and Goals of Care (GOC), a practice widely used for over three decades. Following the findings of an audit and a cross-sectional study in 2019 and 2021 respectively, we implemented several educational and other interventional strategies aimed at enhancing staff awareness and emphasizing the importance of recognizing and documenting of ACD/GOC. The aim of this study was to evaluate the acknowledgement and use of ACD and GOC by Emergency Department (ED) staff following these interventions., Method: We used a mixed methods approach, incorporating both observational and cross-sectional designs with reflexive thematic analysis. Data extraction for the observational study took place between 1st April and 30th June 2023 focusing on a target population of randomly sampled adults aged ≥ 65 years. Demographics and other ACD and GOC related patients' clinical data were collected. Data collection for the cross-sectional study occurred between 19th July and 13th September 2023 targeting all ED staff. Information gathered included demographics, awareness about ACD and GOC, including storage location and implementation, as well as knowledge of Medical Treatment decision Makers (MTDM), a jurisdictional term identifying a person legally appointed to make healthcare decisions on behalf of someone who lacks decision-making capacity and other Victorian State legislative requirements were collected., Results: In the observational period, 22,335 patients attended the ED and 19% (n = 6546) qualified for inclusion from which a sample of 308 patients were randomly extracted. We found ACD documents were noted in the medical records of 6.5% of the sample, fewer than 8% identified in our previous study. There was no correlation between ACD record availability and age (p = 0.054; CI ranging from - 0.065 to 7.768). The response rate for the cross-sectional survey was 12% (n = 340) in contrast to earlier study with 28% (n = 476) respondents. Staff knowledge and familiarity with ACD was 25% and GOC 45%., Conclusion: After implementing interventions in staff education and ACP awareness, we found that ACD documentation did not improve. However, GOC documentation increased in the context of heightened institutional awareness and integration into the Electronic Medical Records (EMR)., (© 2024. Crown.)

Introduction: Advance care planning (ACP) has been widely endorsed and recommended for its many potential benefits, including improved end-of-life (EOL) care, enhanced satisfaction with care, and reduced anxiety and depression. However, little is known about the ACP completion rates and factors affecting ACP among older adults with cancer. This study's purpose was to examine biological, psychological, and social factors affecting ACP in this population., Materials and Methods: Data from the 2002 to 2016 waves of exit interviews from the national longitudinal Health and Retirement Study were analyzed. The sample included 1088 decedents, aged 55 and over, who had a diagnosis of cancer. The exit interviews were completed by a proxy respondent (usually the next of kin of the decedents). ACP outcomes included: having EOL care discussion, durable power of attorney (DPOA), and advance directives (ADs). Multiple logistic regression models were conducted to examine the relationships between predictor variables and each of the three ACP outcome variables., Results: Approximately 65% of the sample had ever discussed EOL care, 61.9% had an assigned DPOA, and 54.1% had ADs. Regression results showed that higher age, Black race, high school and above education, being widowed/never married, higher multimorbidity, and more limitations in activities of daily living and instrumental activities of daily living were significantly associated with the three ACP variables. Surprisingly, Black race was associated with higher odds of ever discussing EOL care and having ADs; high school and above education was associated with lower odds of all three ACP components., Discussion: The majority of participants in this study had discussed EOL care, had an assigned DPOA, and had ADs. However, most participants were White/Caucasian and had completed high school education. Future research that includes more diverse and minoritized participants is needed. Also, the contrasting association of Black race and higher educational status with ACP outcomes warrant further exploration in future studies., Competing Interests: Declaration of Competing Interest None., (Copyright © 2024. Published by Elsevier Ltd.)

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: All authors listed on this manuscript disclose NO actual or potential conflicts of interest that may affect their relationships and activities, directly or indirectly, related to this work.

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 ƞ 2 = .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., Competing Interests: Declaration of Competing Interest No author among the team has any conflict of interest to declare., (Crown Copyright © 2024. Published by Elsevier Ltd. All rights reserved.)

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., (© 2024 The American Geriatrics Society.)

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., Competing Interests: Disclosure The authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

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., (© 2024. The Author(s).)

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 χ 2 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.

Introduction: Advance directives (AdvDirs) align end-of-life care with personal values, averting unnecessary treatments. This study explores factors influencing AdvDir completion., Methods: We conducted a cross-sectional study with community-dwelling adults (n = 166) age range 18-93, using a survey to gather sociodemographics, beliefs, and AdvDir experiences. Multivariate logistic regression quantifies associations between selected covariates and AdvDir completion., Results: We found that 36% of respondents had completed AdvDirs. The majority were comfortable discussing death (77%) and end-of-life care (84%) and recognized the importance of AdvDirs (79%). Age, education level, self-perceived health status, exposure to end-of-life planning, and the preference to limit treatment in potential future Alzheimer's scenarios significantly influenced AdvDir completion., Conclusion: In conclusion, the study highlights: (1) The need for age-specific, personalized AdvDir education initiatives, and (2) The necessity of intensified AdvDir awareness efforts, particularly for individuals favoring unlimited treatment in Alzheimer's or dementia scenarios., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

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., (© 2024. The Author(s).)

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., (© 2024 The Author(s). Published by S. Karger AG, Basel.)

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., (Copyright © 2022 Longwoods Publishing.)

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., (© 2021 The American Geriatrics Society.)

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., (Published by Oxford University Press on behalf of The Gerontological Society of America 2020.)

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

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., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

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., (© 2020 The American Geriatrics Society.)

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., (© 2020 The American Geriatrics Society.)

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.

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.

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., (© 2020 The American Geriatrics Society.)

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 .

Background/objectives: Many older persons with chronic illness use Physician Orders for Life-Sustaining Treatment (POLST) to document portable medical orders for emergency care. However, some POLSTs contain combinations of orders that do not translate into a cohesive care plan (eg, cardiopulmonary resuscitation [CPR] without intensive care, or intensive care without antibiotics). This study characterizes the prevalence and predictors of POLSTs with conflicting orders., Design: Retrospective cohort study., Setting: Large academic health system., Participants: A total of 3,123 POLST users with chronic life-limiting illness who died between 2010 and 2015 (mean age = 69.7 years)., Measurements: In a retrospective review of all POLSTs in participants' electronic health records, we describe the prevalence of POLSTs with conflicting orders for cardiac arrest and medical interventions, and use clustered logistic regression to evaluate potential predictors of conflicting orders. We also examine the prevalence of conflicts between POLST orders for antibiotics and artificial nutrition with orders for cardiac arrest or medical interventions., Results: Among 3,924 complete POLSTs belonging to 3,123 decedents, 209 (5.3%) POLSTs contained orders to "attempt CPR" paired with orders for "limited interventions" or "comfort measures only"; 745/3169 (23.5%) POLSTs paired orders to restrict antibiotics with orders to deliver non-comfort-only care; and, 170/3098 (5.5%) POLSTs paired orders to withhold artificial nutrition with orders to deliver CPR or intensive care. Among POLSTs with orders to avoid intensive care, orders to attempt CPR were more likely to be present in POLSTs completed earlier in the patient's illness course (adjusted odds ratio = 1.27 per twofold increase in days from POLST to death; 95% confidence interval = 1.18-1.36; P < .001)., Conclusion: Although most POLSTs are actionable by clinicians, 5% had conflicting orders for cardiac arrest and medical interventions, and 24% had one or more conflicts between orders for cardiac arrest, medical interventions, antibiotics, and artificial nutrition. These conflicting orders make implementation of POLST challenging for clinicians in acute care settings., (© 2020 The American Geriatrics Society.)

Background: Emergency departments routinely offer cardiopulmonary resuscitation and endotracheal intubation to patients in resuscitative states. With increasing longevity and prevalence of chronic conditions in Australia, there has been growing need to uptake and implement advance care directives and resuscitation plans. This study investigates the frequency of the presence of advance care directives and resuscitation plans and its utilisation in cardiopulmonary and endotracheal intubation decision making., Methods: Retrospective audit of electronic patients' medical records aged ≥65 years presenting over a 3-month period. Data collected included demographics, triage categories, advance care directive and/or resuscitation plans/orders status., Results: A total of 6439 patients were included representing 29% of the total patient population during the study period. Participants were randomly selected (N = 300); mean age was 78.7 (±8.1) years. An advance care directive was present in only 8% and one in three patients (37%) had a previous resuscitation plan/order. Senior consultant was present at the department for consultation by junior doctors for most of the patients (82%). Acknowledgment of either advance care directive or resuscitation plans/orders in clinical notes was only 9.5% (n = 116)., Conclusion: Advance care directive prevalence was low with resuscitation plans/orders being more common. However, clinician acknowledgement was infrequent for both., (Crown Copyright © 2020. Published by Elsevier Ltd. All rights reserved.)

Purpose: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer., Methods: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed., Results: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer., Conclusions: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.

Background: Several studies have described the population of adult trauma patients who undergo withdrawal of life-sustaining treatments (WLST); however, no study has looked specifically at trauma patients who undergo WLST following surgery., Methods: This was a retrospective chart review of all trauma patients who underwent surgery at our trauma center between January 1 and December 31, 2017. Demographics were collected along with injury patterns and advance directives. Charts of all patients who died or who were discharged to hospice were analyzed to determine whether WLST occurred. Statistics included Fisher's exact test and Mann-Whitney U test., Results: Three thousand and twenty-five adult trauma patients received care and 1495 (49.4%) had operations. Thirty (2.0%) patients underwent WLST, 15 (50.0%) of whom died in the hospital and 15 (50.0%) of whom were discharged to hospice. Twenty-six (86.7%) patients had a palliative care consult and 12 (40.0%) had prior advance directives. The most common injuries were femur fractures and subdural hematomas. Adjusting for age, white race, and age-adjusted CCI, femur fracture patients had, on average, 8.8 more hours between presentation and surgery (95% CI 2.1-15.4, P = .01) and 39 fewer hours between surgery and WLST (95% CI -107-29, P = .26) than traumatic brain injury patients., Discussion: The short time between surgery and WLST in this cohort of patients may demonstrate that surgery was not aligned with patients' goals of care. A patient-centered approach that includes surgeon-driven palliative care discussions may help avoid nonbeneficial surgery in the last few days of life.

Completing an advance directive offers individuals the opportunity to make informed choices about end-of-life care. However, these decisions could be influenced in different ways depending on how the information is presented. We randomly presented 185 participants with four distinct types of advance directive: neutrally framed (as reference), negatively framed, religiously framed, and a combination. Participants were asked which interventions they would like to receive at the end of life. Between 60% and 70% of participants responded "accept the special interventions" on the reference form. However, the majority (70%-90%) chose "refuse the interventions" on the negative form. With respect to the religious form, 70% to 80% chose "not decided yet." Participants who refused special life-sustaining treatments were older, female, and with better prior knowledge about advance directives. Our findings imply that the specific content of advance directives could affect decision-making with regard to various interventions for end-of-life care.

Purpose: Little has been determined regarding the association between patients' and families' illness understanding and preferences for medical care. We aimed to evaluate the association of illness understanding with advance care planning (ACP) and preferences for end-of-life care, such as aggressive care, early palliative care (EPC), and hospice care, among advanced cancer patients and their family caregivers., Methods: Patients were recruited for a prospective cohort study at outpatient and inpatient facilities in nine university hospitals in Korea (n = 150), and their primary family caregivers were also asked to participate (n = 101). Data on ACP and end-of-life care preferences were collected only at baseline in the cohort study with optional questions and were used to analyze these study results., Results: Patients with illness understanding were more likely to have documented physician orders for life-sustaining treatment (POLSTs) (adjusted odds ratio [aOR] of 4.94) and to have discussed ACP with their families (aOR 2.15) than those who did not. Being expected to live for several months, they were unlikely to prefer active treatment. Caregivers understanding patients' illness were more likely to write advance directives (ADs) and to discuss ACP; furthermore, they had already discussed ACP with family members. They did not prefer active treatment or life-sustaining treatments when their family members were expected to die within a few weeks. There was no significant association between illness understanding and preferences for EPC., Conclusion: Accurately recognizing an incurable disease is associated with preferences for more ACP and less aggressive care but not with preferences for EPC or hospice care among both advanced cancer patients and their family caregivers.

Advance directives (ADs) allow individuals to legally determine their preferences for end-of-life (EOL) medical treatment and designate a health-care proxy to act on their behalf prior to losing the cognitive ability to make informed decisions for themselves. An interprofessional group of researchers (law, nursing, medicine, and social work) conducted an exploratory study to identify the differences in quality-of-life (QOL) language found within the AD state statutes from 50 US states and the District of Columbia. Data were coded using constant comparative analysis. Identified concepts were grouped into 2 focus areas for EOL discussions: communication/awareness of surroundings and activities of daily living. Language regarding communication/awareness of surroundings was present in the half of the statutes. Activities of daily living were addressed in only 18% of the statutes. Only 3 states (Arkansas, Nevada, and Tennessee) specifically addressed QOL. Patients are best served when professionals, regardless of discipline, can share and transform knowledge for patients in times of crisis and loss in ways that are empathetic and precise. Interprofessional collaborative practice (IPCP) comprises multiple health workers from different professional backgrounds working together with patients, families, and communities to deliver the highest quality of care. One of the major competencies of IPCP encompasses values and ethics. Interprofessional collaborative practice is offered as the means to deliver person-centered value-based care when facilitating these crucial dialogs and making recommendations for change.

Introduction: Numerous studies about poor communication and altered quality of life of patients with chronic obstuctive pulmonary disease (COPD) lead to the conclusion that overall palliative management of COPD remains to be improved. The aim of this study was to describe pulmonologists' practice of palliative care for COPD patients in order to identify obstacles to it., Material and Method: A survey was sent to all pulmonologists whose email appeared in the 2017 French-language Respiratory Medicine Society's directory., Results: A total of 294 responses were obtained, among which 287 were analysed. Overall, 81.6% of the pulmonologists said that they identify a distinct palliative phase from "sometimes to often" in the care of COPD patients. When not identified, the most common reason given (68.8%) was the difficulty of defining when to start palliative care. Aspects of the palliative approach, which were considered the most problematic for pulmonologists, were the discussion of end of life care, and the impression that COPD patients have a low demand for information. 31% of pulmonologists reported that they gathered information about patients' wishes to undergo resuscitation and endotracheal intubation in 61 % to 100% of patients who they judged to have the most severe disease., Conclusion: Uncertainty as to when to begin a palliative approach for COPD patients and perceptions around communication in chronic diseases appear to be the main obstacles to a palliative approach., (Copyright © 2020 SPLF. Published by Elsevier Masson SAS. All rights reserved.)

Objective: Terminal patients and their relatives must know their real situation, and be treated according to the principle of autonomy, to establish therapeutic objectives adapted each one, according to their needs and decisions. The objective of this study is to identify the sufficient existence of records in the Medical Histories of terminal patients, which indicate their situation, such as the information given to the patients, or the LET, No-RCP or Z.51.5 codes, and the statistical relation they have with the sociodemographic and clinical variables., Methods: Cross-sectional study in a third-level hospital, with patients admitted between January and December 2017, who died with terminal illness criteria. Data were collected from the medical records, and, fundamentally, from the nursing clinical notes. The statistical analysis was performed with the SPSS program, version 22., Results: Participants were 140 people, 54.3% men, of 78.51 (SD=13.5) of middle age. People up to 70 years of age received less information (Odds ratio (OR): 0.077, 95% Confidence interval (CI): 0.015-0.390) and lower sedation (OR: 0.366, 95% CI: 0.149-0.899). Proceeding from city reduced the probability of receiving information (OR: 0.202; IC95%: 0.058-0.705). Presenting dyspnea reduced LTE (OR: 0.44, 95% CI: 0.20-093), No CPR (0.29, 95% CI: 0.12-0.68) and sedation (OR: 0.27; 95% CI: 0.12-060). Fatigue increased the probability of being Non-CPR (OR: 2.77, 95% CI: 1.166-6.627) and of receiving sedation (OR: 2.6, 95% CI: 1.065-6.331)., Conclusions: Efforts to empower the patient in the decision of their process and the management of the information of their diagnosis and prognosis are still lacking. A greater and better clinical records facilitates knowing how actions are developed, allowing to identify and implement ethical and responsible interventions.

Background: In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics and with the intention to respond to legally binding instructions. Healthcare to dying residents with dementia in nursing homes is interpreted in light of the Regulation theory., Methods: Nursing home palliative care reference nurses were contacted through questionnaire. One hundred twenty-one addresses were reached, 69 responses were collected, giving a response rate of 57%. In order to deepen the understanding, 10 semi-directive interviews were conducted in 10 different nursing facilities with 12 palliative nurses., Results: Presently, Swiss nursing homes are lacking a model of AD suitable to people with dementia. The study sheds light on dissimilarities in the purpose assigned to ADs' procedure in the different facilities. Discrepancies in end-of-life care practices reveal more the influence of structural and organisational devices specific to each setting than conflicting views on end-of-life care principles. We analyse the interpretation of the Law and its implementation in the participating NHs as compromises that could be accounted for as a form of social regulation., Conclusion: Dementia accentuates the uncertainty inherent to end-of-life trajectories. The implementation of standardised procedures aimed at collecting the wishes of the person deprived of his or her discernment is source of dissonances with regard to the multiple interests involved in these care situations. In this context, the drafting of ADs during end-of-life care in NH correspond to new normative constraints requiring new collective regulation actions.

Importance: There is limited evidence regarding how patients make choices in advance directives (ADs) or whether these choices influence subsequent care., Objective: To examine whether default options in ADs influence care choices and clinical outcomes., Design, Setting, and Participants: This randomized clinical trial included 515 patients who met criteria for having serious illness and agreed to participate. Patients were enrolled at 20 outpatient clinics affiliated with the University of Pennsylvania Health System and the University of Pittsburgh Medical Center from February 2014 to April 2016 and had a median follow-up of 18 months. Data analysis was conducted from November 2018 to April 2019., Interventions: Patients were randomly assigned to complete 1 of the 3 following ADs: (1) a comfort-promoting plan of care and nonreceipt of potentially life-sustaining therapies were selected by default (comfort AD), (2) a life-extending plan of care and receipt of potentially life-sustaining therapies were selected by default (life-extending AD), or (3) no choices were preselected (standard AD)., Main Outcomes and Measures: This trial was powered to rule out a reduction in hospital-free days in the intervention groups. Secondary outcomes included choices in ADs for an overall comfort-oriented approach to care, choices to forgo 4 forms of life support, patients' quality of life, decision conflict, place of death, admissions to hospitals and intensive care units, and costs of inpatient care., Results: Among 515 patients randomized, 10 withdrew consent and 13 were later found to be ineligible, leaving 492 (95.5%) in the modified intention-to-treat (mITT) sample (median [interquartile range] age, 63 [56-70] years; 279 [56.7%] men; 122 [24.8%] black; 363 [73.8%] with cancer). Of these, 264 (53.7%) returned legally valid ADs and were debriefed about their assigned intervention. Among these, patients completing comfort ADs were more likely to choose comfort care (54 of 85 [63.5%]) than those returning standard ADs (45 of 91 [49.5%]) or life-extending ADs (33 of 88 [37.5%]) (P = .001). Among 492 patients in the mITT sample, 57 of 168 patients [33.9%] who completed the comfort AD, 47 of 165 patients [28.5%] who completed the standard AD, and 35 of 159 patients [22.0%] who completed the life-extending AD chose comfort care (P = .02), with patients not returning ADs coded as not selecting comfort care. In mITT analyses, median (interquartile range) hospital-free days among 168 patients assigned to comfort ADs and 159 patients assigned to life-extending default ADs were each noninferior to those among 165 patients assigned to standard ADs (standard AD: 486 [306-717] days; comfort AD: 554 [296-833] days; rate ratio, 1.05; 95% CI, 0.90-1.23; P < .001; life-extending AD: 550 [325-783] days; rate ratio, 1.03; 95% CI, 0.88-1.20; P < .001). There were no differences among groups in other secondary outcomes., Conclusions and Relevance: In this randomized clinical trial, default options in ADs altered the choices seriously ill patients made regarding their future care without changing clinical outcomes., Trial Registration: ClinicalTrials.gov Identifier: NCT02017548.

Background: It is unknown if the implementation of an advance care planning (ACP) program is feasible in daily clinical practice for glioblastoma patients. We aimed to develop an ACP program and assess the preferred content, the best time to introduce such a program in the disease trajectory, and possible barriers and facilitators for participation and implementation., Methods: A focus group with health care professionals (HCPs) and individual semi-structured interviews with patients and proxies (of both living and deceased patients) were conducted., Results: All predefined topics were considered relevant by participants, including the current situation, worries/fears, (supportive) treatment options, and preferred place of care/death. Although HCPs and proxies of deceased patients indicated that the program should be implemented relatively early in the disease trajectory, patient-proxy dyads were more ambiguous. Several patient-proxy dyads indicated that the program should be initiated later in the disease trajectory. If introduced early, topics about the end of life should be postponed. A frequently mentioned barrier for participation was that the program would be too confronting, while a facilitator was adequate access to information., Conclusion: This study resulted in an ACP program specifically for glioblastoma patients. Although participants agreed on the program content, the optimal timing of introducing such a program was a matter of debate. Our solution is to offer the program shortly after diagnosis but let patients and proxies decide which topics they want to discuss and when. The impact of the program on several patient- and care-related outcomes will be evaluated in the next step.

Background: Emergency departments (EDs) are crowded with critically ill patients, many of whom are no longer able to communicate with the emergency staff. Substitute decision makers are often unknown or not reachable in time. The availability of advance directives (ADs) among Swiss ED patients has not yet been evaluated. The purpose of this prospective survey was to investigate the prevalence of ADs among ED patients and to identify factors associated with the existence or absence of ADs., Methods: In a prospective survey, we enrolled consecutive patients from 10&ndash;30 July 2017 who visited a tertiary care ED. Patients completed a written, standardised and self-administrated questionnaire during the waiting time. The primary endpoint was the prevalence of ADs in ED patients. Secondarily, we defined predictors associated with the existence or absence of ADs. Two months after the first survey, there was a written follow-up survey asking patients without ADs whether they had completed an AD in the meantime., Results: Fifty-eight of 292 enrolled ED patients (19.9%) had a completed AD. Overall, 49.3% of the survey population was female. Patients having an AD were older (69.5 years, interquartile range [IQR] 57&ndash;81 vs 39 years, IQR 27&ndash;56) and had more comorbidities (67.2% vs 38.9%) compared with patients without ADs. The four leading reasons given for not having an AD were: 33.6% never considered completing one, 26% did not know about ADs, 14% preferred family to make decisions, 11.6% felt it was too early to make such a decision. Predictors for having an AD were older age (p &lt;0.001), being in long-term medical treatment by a specialist (p = 0.050), being Swiss (p = 0.021) and living with nursing care (p = 0.043). Of the ED patients with ADs, 46.6% discussed their AD with the family and 31% with their general practitioner. Results of the follow-up survey showed that eight participants had completed an AD in the meantime. The prevalence of ADs increased from 19.9% to 22.6%., Discussion: During the last 20 years, the percentage of patients having an AD has not changed. Even today, only every fifth ED patient has a completed AD. Nearly two thirds of ED patients never considered completing one or did not know about ADs. Therefore, there is an urgent need to better inform and sensitise the public, so that they will define in a timely manner legally valid and specifically defined decisions about future medical treatments and wishes by completing individual directives.

Background: Increased awareness of the clinical course of nursing home residents with advanced dementia and advance care planning (ACP) has become the cornerstone of good palliative care., Objective: The aim of our study is to describe changes in ACP in the form of physician treatment orders (PTOs), symptom prevalence and possible burdensome interventions among nursing home (NH) residents who died between 2004-2009 and 2010-2013 METHODS: Retrospective study RESULTS: The number of PTOs regarding forgoing antibiotics or parenteral antibiotics, forgoing artificial nutrition or hydration or forgoing hospitalisation doubled between 2004-2009 and 2010-2013 (38.1% vs. 64.9%, p < 0.001; 40.0% vs. 81.7%, p < 0.001; 28.1% vs. 69.5%, p < 0.001, respectively). PTOs were also done significantly earlier in 2010-2013 than in 2004-2009. The prevalence of distressing symptoms and possible burdensome interventions remained unchanged, although the prevalence of consistency with the PTOs was high., Conclusion: Despite the increased number of PTOs, this had little effect on symptom prevalence and possible burdensome interventions experienced by NH residents in the last days of life., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Background: In emergency departments, for some patients, death is preceded by a decision of withholding or withdrawing life-sustaining treatments. This concerns mainly patients over 80, with many comorbidities. The decision-making process of these decisions in emergency departments has not been extensively studied, especially for noncommunicating patients., Aim: The purpose of this study is to describe the decision-making process of withholding and withdrawing life-sustaining treatments in emergency departments for noncommunicating patients and the outcome of said patients., Design: We conducted a prospective multicenter study in three emergency departments of university hospitals from September 2015 to January 2017., Results: We included 109 patients in the study. Fifty-eight (53.2%) patients were coming from nursing homes and 52 (47.7%) patients had dementia. Decisions of withholding life-sustaining treatment concerned 93 patients (85.3%) and were more frequent when a surrogate decision maker was present 61 (65.6%) versus seven (43.8%) patients. The most relevant factors that lead to these decisions were previous functional limitation (71.6%) and age (69.7%). Decision was taken by two physicians for 80 patients (73.4%). The nursing staff and general practitioner were, respectively, involved in 31 (28.4%) and two (1.8%) patients. A majority of the patients had no advance directives (89.9%), and the relatives were implicated in the decision-making process for 96 patients (88.1%). Death in emergency departments occurred for 47 patients (43.1%), and after 21 days, 84 patients (77.1 %) died., Conclusion: There is little anticipation in end-of-life decisions. Discussion with patients concerning their end-of-life wishes and the writing of advance directives, especially for patients with chronic diseases, must be encouraged early., (© 2019 John Wiley & Sons, Ltd.)

Using Andersen's health behavioral model as a framework, this study examined factors associated with the completion of advance directives and the behavior of sharing them with one's family and health care providers. Data were from the 2014 United States of Aging Survey ( N = 1,153; aged 60 or older), and multinomial logistic regression was used for analysis. We found that 73% of respondents had advance directives. However, 28% have not shared their advance directives with anyone. The sense of having completed a great deal of preparation for the future and the number of illnesses were found to be relevant to the behavior of sharing advance directives. Existing educational training and interventions can be expanded to increase public awareness and encourage people to share their completed advance directives with others. Policies mandating physicians to engage in advance directive conversations with patients during annual checkups might improve completion and sharing of advance directives.

Background: Overuse of antibiotics in end-of-life patients with advanced directives increases bacterial resistance and causes morbidity and mortality. Consultations with infectious disease (ID) physicians and burnout, which can affect antibiotic days of therapy (DOT) prescribed by physicians, have not been examined so far., Objectives: To assess antibiotic use by physicians in end-of-life (EOL) patients with advanced directives and to investigate the association between ID consultations, physician burnout, and antibiotic DOT in those patients., Design: A descriptive correlational study., Setting: Acute-care and post-acute-care hospitals., Participants: The study included 213 physicians and 932 their hospitalized patients in the last 2 weeks of life., Methods: We distributed questionnaires and analyzed the data collected regarding ID consultation, EOL antibiotics prescription with and without an advanced directive, and physician burnout to 278 physicians, and 213 were completed (response rate 76%)., Results: Of the 932 deaths, 435 of 664 (>50%) were EOL patients with advanced directives. Of these patients, 74% received antibiotics, 29.9% had bacterial resistance cultures, and antibiotics were discontinued in only 5%. Half of the physicians lacked knowledge concerning antibiotics use issues and had significantly fewer consultations with ID physicians in EOL patients with advanced directives (mean rate, 0.27) than those without advanced directives (mean rate, 0.47). ID physicians reported significantly higher emotional exhaustion levels (mean rate, 29) than other medical specialties (mean rate, 19.2). Antibiotic DOT was significantly higher when patients had ID consultations (mean rate, 21.6) than in patients who did not (mean rate, 16.2). In post-acute-care hospitals and/or geriatric wards, antibiotic DOT was significantly higher than in other types of hospitals and/or wards. Depersonalization level was negatively related to antibiotic DOT (P < .05)., Conclusions: Antibiotics are overused in EOL patients with advanced directives. ID physician burnout and impact of ID consultation should be further assessed.

Objectives: Many older adults in long-term care (LTC) experience acute health crises but are at high risk of transfer distress and in-hospital morbidity and mortality. Residents often complete advance directives (ADs) regarding future care wishes, including directives for hospital transfers. This study aims to estimate the prevalence of, and adherence to, "no transfer to hospital" ADs in LTC, and to explore the circumstances leading to transfers against previously expressed directives., Design: We conducted a mixed methods study in 10 nursing homes in Nova Scotia, Canada. A total of 748 resident charts and Emergency Health Services (EHS) database notes were reviewed from 3 time periods spanning implementation of a new primary care model, Care by Design (CBD)., Measures: ADs were divided into those requesting transfer to hospital vs on-site management only, which were then analyzed in relation to actual hospital transfers. Reasons for EHS calls, management, and qualitative data were derived from the EHS database. Resident variables were obtained from LTC charts. Measures were compared between time periods., Results: ADs were complete in 92.4% of charts. Paramedics were called for 80.5% of residents, and 73.6% were transferred to hospital, 51.3% of whom had explicit ADs to the contrary. The majority of those were transferred for fall-related injuries, followed by medical illness. Unclear care plans, symptom control, and perceived need for investigations and procedures all influenced transfer decisions., Conclusions/implications: The use of "no transfer to hospital" directives did not appear to impact the number of residents being transferred to acute care. Half of those transferred to hospital had explicit ADs to the contrary, largely driven by fall-related injury. The high incidence of injury-related transfers highlights an important gap in advance care planning. Clarifying transfer preferences for injury management in advance directives may lead to better end-of-life experiences for residents and improve effective resource utilization., (Copyright © 2019. Published by Elsevier Inc.)