Do-Not-Hospitalize Orders in Assisted Living Facilities: Direct Care Workers' Perspectives.

PURPOSE: To gather sufficient qualitative data to create an intervention that would prevent direct care workers (DCWs) from sending residents with do-not-hospitalize (DNH) orders to the hospital. METHOD: This was a qualitative study with eight participants that included a descriptive survey followed by semi-structured interviews. RESULTS: DCWs were unfamiliar with DNH orders and their thinking on end-of-life care was binary (hospice or hospital) and protocol driven. However, supportive leaders were able to help DCWs problem-solve these complicated scenarios. Results were mixed on whether having a RN on site was helpful. CONCLUSION: DCWs may benefit from having access to a nurse with palliative care experience when making decisions about residents with DNH orders. [Journal of Gerontological Nursing, 50(4), 11-15.].

Do Suicide Attempters Have a Right Not to Be Stabilized in an Emergency?

The standard of care in the United States favors stabilizing any adult who arrives in an emergency department after a failed suicide attempt, even if he appears decisionally capacitated and refuses life-sustaining treatment. I challenge this ubiquitous practice. Emergency clinicians generally have a moral obligation to err on the side of stabilizing even suicide attempters who refuse such interventions. This obligation reflects the fact that it is typically infeasible to determine these patients' level of decisional capacitation-among other relevant information-in this unique setting. Nevertheless, I argue, stabilizing suicide attempters over their objection sometimes violates a basic yet insufficiently appreciated right of theirs-the right against bodily invasion. In such cases, it is at least prima facie wrong to stabilize a patient who wants to die even if they lack a contrary advance directive or medical order and suffer from no terminal physical illness.

Comparative stability analysis of Indonesian banks: Markov Switching-Dynamic Regression for Islamic and conventional sectors.

The banking industry necessitates implementing an early warning system to effectively identify the factors that impact bank managers and enable them to make informed decisions, thereby mitigating systemic risk. Identifying factors that influence banks in times of stability and crisis is crucial, as it ultimately contributes to developing an improved early warning system. This study undertakes a comparative analysis of the stability of Indonesian Islamic and conventional banking across distinct economic regimes-crisis and stability. We analyze monthly banking data from December 2007 to November 2022 using the Markov Switching Dynamic Regression technique. The study focuses on conducting a comparative analysis between Islamic banks, represented by Islamic Commercial Bank (ICB) and Islamic Rural Bank (IRB), and conventional banks, represented by the Conventional Commercial Bank (CCB) and Conventional Rural Bank (CRB). The findings reveal that both Islamic and conventional banks exhibit a higher probability of being in a stable regime than a crisis regime. Notably, Islamic banks demonstrate a greater propensity to remain in a stable regime than their conventional counterparts. However, in a crisis regime, the likelihood of recovery for Sharia-compliant institutions is lower than for conventional banks. Furthermore, our analysis indicates that larger banks exhibit higher stability than their smaller counterparts regarding assets and size. This study pioneers a comprehensive comparison of the Z-score, employed as a proxy for stability, between two distinct classifications of Indonesian banks: Sharia (ICB and IRB) and conventional (CCB and CRB). The result is expected to improve our awareness of the elements that affect the stability of Islamic and conventional banking in Indonesia, leading to a deeper comprehension of their dynamics.

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.

Attitudes of the Portuguese population towards advance directives: an online survey.

BACKGROUND: Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people's attitudes towards ADs. METHODS: An online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a -form-which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale-was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023. RESULTS: A total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence. CONCLUSION: The results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens' autonomy in end-of-life care planning.

Oncologists' perspective on advance directives, a French national prospective cross-sectional survey - the ADORE study.

BACKGROUND: The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among oncology patients remains low. This study investigated oncologists' perspectives on the interests and challenges associated with implementing AD. METHODS: A French national online survey targeting hospital-based oncologists explored five areas: AD information, writing support, AD usage, personal perceptions of AD's importance, and respondent's profile. The primary outcome was to assess how frequently oncologists provide patients with information about AD in daily clinical practice. Additionally, we examined factors related to delivering information on AD. RESULTS: Of the 410 oncologists (50%) who responded to the survey, 75% (n = 308) deemed AD relevant. While 36% (n = 149) regularly inform patients about AD, 25% (n = 102) remain skeptical about AD. Among the respondents who do not consistently discuss AD, the most common reason given is the belief that AD may induce anxiety (n = 211/353; 60%). Of all respondents, 90% (n = 367) believe patients require specific information to draft relevant AD. Physicians with experience in palliative care were more likely to discuss AD (43% vs 32.3%, p = 0.027). Previous experience in critical care was associated with higher levels of distrust towards AD (31.5% vs 18.8%, p = 0.003), and 68.5% (n = 281) of the respondents expressed that designating a "person of trust" would be more appropriate than utilizing AD. CONCLUSION: Despite the perceived relevance of AD, only a third of oncologists regularly apprise their patients about them. Significant uncertainty persists about the safety and relevance of AD.

"Terminal anorexia nervosa" may not be terminal: An empirical evaluation.

Gaudiani et al. (2022) presented terminal anorexia nervosa (T-AN) as a potential new specifier to the anorexia nervosa (AN) diagnosis, with criteria including (a) AN diagnosis, (b) age > 30 years, (c) previously participated in high-quality care, and (d) the clear, consistent determination by a patient with decision-making capacity that additional treatment would be futile, knowing death will result. This study's purpose was to empirically examine a subgroup of participants with AN who met the first three criteria of T-AN-and a smaller subset who also met a proxy index of the fourth criterion involving death (TD-AN)-and compare them to an adult "not terminal" anorexia nervosa (NT-AN) group and to a "not terminal" subset 30 years of age or older (NTO-AN). Patients at U.S. eating disorder treatment facilities (N = 782; T-AN: n = 51, TD-AN: n = 16, NT-AN: n = 731, NTO-AN: n = 133), all of whom met criteria for a current Diagnostic and Statistical Manual of Mental Disorders, 5th Edition diagnosis of AN, were compared regarding admission, discharge, and changes from admission to discharge on physiological indices (i.e., white blood cell counts, albumin levels, aspartate aminotransferase levels, and body mass index), as well as self-report measures (i.e., eating disorder, depression, anxiety, and obsessive-compulsive symptoms). In contrast to the tight syndromal symptom interconnections of, and inevitable spiral toward death expected for, a terminal diagnosis, results suggest substantial variability within the T-AN group and TD-AN subset, and an overall trend of improvement across physiological and self-report measures. This study thus provides some empirical evidence against the specification of the T-AN diagnosis. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Aligning goals with care: Advance directives in older adults with implantable cardioverter-defibrillators.

BACKGROUND: Patients ≥80 with implantable cardioverter-defibrillators (ICDs) have high rates of hospitalization and mortality, yet few have documented advance directives. We sought to determine the prevalence of advance directives in adults ≥80 years with ICDs, focusing on those with frailty and cognitive impairment. METHODS: Prospective cohort study (July 2016-May 2019) in an electrophysiology clinic. Presence of advance directives (health care proxies [HCP] and living wills [LW], or medical orders for life-sustaining treatment [MOLST]) was determined by medical record review. Frailty and cognitive impairment were screened using 4-m gait speed and Mini-Cog. RESULTS: 77 Veterans were evaluated. Mean age 84 years, 100% male, 70% frail. Overall, 52 (68%) had an HCP and 37 (48%) had a LW/MOLST. Of 67 with cognitive testing, 36% were impaired. HCP documentation was similar among frail and non-frail (69% vs. 65%). LW/MOLST was more prevalent among frail versus non-frail (52% vs. 39%). There was no difference in HCP documentation by cognitive status (67%). A LW/MOLST was more frequent for cognitively impaired versus non-impaired (50% vs. 42%). Among 19 Veterans who were frail and cognitively impaired, 14 (74%) had an HCP and 11 (58%) had a LW/MOLST. CONCLUSIONS: Most Veterans had a documented advance directive, but a significant minority did not. Simple frailty and cognitive screening tools can rapidly identify patients for whom discussion of advance directives is especially important.

Measuring patients' medical treatment preferences in advance care planning: development and validation of the Treat-Me-ACP instrument - a secondary analysis of a cluster-randomized controlled trial.

BACKGROUND: Advance Care Planning interventions should be evaluated as broadly as possible to gain a holistic understanding of the Advance Care Planning process. However, validated early stage outcome instruments are lacking. Therefore, the Treatment-Preference-Measure-Advance Care Planning (Treat-Me-ACP) instrument was developed and validated as part of the cluster-randomized controlled trial STADPLAN (Study on Advance Care Planning in care-dependent community-dwelling older persons) to assess the effects of Advance Care Planning interventions on patients' medical treatment preferences. METHODS: The design of Treat-Me-ACP is based on the Emanuel Medical Directive and the Life Support Preferences Questionnaires. Using a multi-stage team approach a preliminary version of the Treat-Me-ACP was developed and pre-tested. The pre-tested instrument consists of one global medical care goal-item, five hypothetical scenarios with five hypothetical treatments, and one how would you feel-item within each scenario. A total of five scenario preference scores and five treatment preference scores can be formed. This version was subsequently applied to a subsample of the STADPLAN project (n = 80) to assess patient's preferences at baseline (T0) and at 12-month follow-up (T2). The further validation steps were based on this subsample and included: (1) acceptance by using completion rate and frequencies of missing data, (2) internal consistency by using Cronbach's α to test whether it was possible to create preference scores by scenario and treatment, (3) concurrent validation examining the association between the global medical care goal-item and the preference scores and the association between the how would you feel-items and the scenario preference scores, and (4) responsiveness of the instrument to changes in preferences for life-sustaining treatments by comparing preference scores from T0 to T2 between study groups. RESULTS: Acceptance of the instrument was high. Results of concurrent validation indicate that the five scenarios represent the global medical care goal well. The preference scores showed an average tendency for decreasing preferences for life-sustaining treatments across all scales for the intervention group during study follow-up. CONCLUSIONS: The Treat-Me-ACP can be used to evaluate the dynamics of patients' medical treatment preferences in Advance Care Planning. It has been validated for care-dependent community-dwelling older persons and can be used as an additional outcome measure in evaluating the effectiveness of ACP interventions. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00016886 on 04/06/2019.

Primary Care Interventions to Prevent Child Maltreatment: Evidence Report and Systematic Review for the US Preventive Services Task Force.

Importance: Child maltreatment is associated with serious negative physical, psychological, and behavioral consequences. Objective: To review the evidence on primary care-feasible or referable interventions to prevent child maltreatment to inform the US Preventive Services Task Force. Data Sources: PubMed, Cochrane Library, and trial registries through February 2, 2023; references, experts, and surveillance through December 6, 2023. Study Selection: English-language, randomized clinical trials of youth through age 18 years (or their caregivers) with no known exposure or signs or symptoms of current or past maltreatment. Data Extraction and Synthesis: Two reviewers assessed titles/abstracts, full-text articles, and study quality, and extracted data; when at least 3 similar studies were available, meta-analyses were conducted. Main Outcomes and Measures: Directly measured reports of child abuse or neglect (reports to Child Protective Services or removal of the child from the home); proxy measures of abuse or neglect (injury, visits to the emergency department, hospitalization); behavioral, developmental, emotional, mental, or physical health and well-being; mortality; harms. Results: Twenty-five trials (N = 14 355 participants) were included; 23 included home visits. Evidence from 11 studies (5311 participants) indicated no differences in likelihood of reports to Child Protective Services within 1 year of intervention completion (pooled odds ratio, 1.03 [95% CI, 0.84-1.27]). Five studies (3336 participants) found no differences in removal of the child from the home within 1 to 3 years of follow-up (pooled risk ratio, 1.06 [95% CI, 0.37-2.99]). The evidence suggested no benefit for emergency department visits in the short term (<2 years) and hospitalizations. The evidence was inconclusive for all other outcomes because of the limited number of trials on each outcome and imprecise results. Among 2 trials reporting harms, neither reported statistically significant differences. Contextual evidence indicated (1) widely varying practices when screening, identifying, and reporting child maltreatment to Child Protective Services, including variations by race or ethnicity; (2) widely varying accuracy of screening instruments; and (3) evidence that child maltreatment interventions may be associated with improvements in some social determinants of health. Conclusion and Relevance: The evidence base on interventions feasible in or referable from primary care settings to prevent child maltreatment suggested no benefit or insufficient evidence for direct or proxy measures of child maltreatment. Little information was available about possible harms. Contextual evidence pointed to the potential for bias or inaccuracy in screening, identification, and reporting of child maltreatment but also highlighted the importance of addressing social determinants when intervening to prevent child maltreatment.

Portuguese Advance Directives-a twist against futility? A cross sectional study.

BACKGROUND: Advance Directive documents allow citizens to choose the treatments they want for end-of-life care without considering therapeutic futility. OBJECTIVES: To analyze patients' and caregivers' answers to Advance Directives and understand their expectations regarding their decisions. DESIGN AND SETTING: This study analyzed participants' answers to a previously published trial, conceived to test the document's efficacy as a communication tool. METHODS: Sixty palliative patients and 60 caregivers (n = 120) registered their preferences in the Advance Directive document and expressed their expectations regarding whether to receive the chosen treatments. RESULTS: In the patient and caregiver groups, 30% and 23.3% wanted to receive cardiorespiratory resuscitation; 23.3% and 25% wanted to receive artificial organ support; and 40% and 35% chose to receive artificial feeding and hydration, respectively. The participants ignored the concept of therapeutic futility and expected to receive invasive treatments. The concept of therapeutic futility should be addressed and discussed with both the patients and caregivers. Legal Advanced Directive documents should be made clear to reduce misinterpretations and potential legal conflicts. CONCLUSION: The authors suggest that all citizens should be clarified regarding the futility concept before filling out the Advance Directives and propose a grammatical change in the document, replacing the phrase "Health Care to Receive / Not to Receive" with the sentence "Health Care to Accept / Refuse" so that patients cannot demand treatments, but instead accept or refuse the proposed therapeutic plans. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT05090072. URL: https://clinicaltrials.gov/ct2/show/NCT05090072.

Barriers to initiate a discussion about advance care planning among older Taiwanese residents of nursing homes and their families: A qualitative study.

BACKGROUND: In Taiwan, the Patients' Right to Autonomy Act was enacted in 2019. However, advance care planning (ACP) implementation rates remain low in long-term care facilities. AIM: This study explored the barriers to initiate a discussion about ACP among older Taiwanese residents of nursing homes and their families. METHODS: A descriptive qualitative design was used. Face-to-face interviews were individually conducted with 38 participants (residents: 18; family members: 20), and data were analyzed through content analysis. RESULTS: Five themes were identified: (1) having cultural or spiritual concerns (both groups), (2) prioritizing the bigger picture (family) (both groups), (3) waiting for the right time (both groups), (4) feeling unsure (residents), and (5) following the pace of the residents (family members). CONCLUSION: The results indicate that discussing ACP with Chinese people and their families clashes with traditional Chinese culture. To implement ACP in long-term care facilities based in regions with ethnically Chinese populations, medical professionals must ensure that the residents and their family members understand advance directives and their role in ensuring a good death and must act as a bridge between residents and their family members to assist them in making consensual end-of-life-care decisions with residents.

Assessment of complementary health approaches use in pediatric oncology: Modification and preliminary validation of the "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires.

OBJECTIVE: Complementary Health Approaches (CHA) are commonly used by children with cancer; however, a few health care providers (HCPs) inquire about the use of CHA. A standardized questionnaire could facilitate such clinical discussions. We aimed to adapt and determine the face and content validity of the "Which Health Approaches and Treatments are you using?" (WHAT) child and parent-report questionnaires in pediatric oncology. METHODS: An electronic Delphi survey that included children with cancer (8-18 years), parents, and HCPs and CHA researchers was conducted to reach consensus on the content of the WHAT questionnaires in pediatric oncology. Children and parents from the Hospital for Sick Children (SickKids), and HCPs and researchers from the International Society of Pediatric Oncology and Pediatric Complementary and Alternative Medicine Research and Education Network completed the survey. To determine the face and content validity of the questionnaires, two iterative cycles of individual interviews were conducted with purposive samples of children (8-18 years), parents, and HCPs from SickKids. RESULTS: Consensus was reached on all domains and items of the original WHAT questionnaires after one Delphi cycle (n = 61). For face and content validity testing, the first cycle of interviews (n = 19) revealed that the questionnaires were mostly comprehensive and relevant. However, the paper-based format of the original WHAT was not user-friendly, and generic items were vague and not aimed at facilitating clinical dialogues about CHA use. The WHAT questionnaires were then modified into electronic cancer-specific self- and proxy-report questionnaires including 13 and 15 items, respectively. The second cycle (n = 21) showed no need for further changes. CONCLUSIONS: The modified electronic cancer-specific WHAT questionnaires showed adequate face and content validity. The next step is to determine inter-rater reliability, construct validity, and feasibility of administration of the modified WHAT questionnaires in pediatric oncology.

Examining interrater agreement between self-report and proxy-report responses for the quality of life-aged care consumers (QOL-ACC) instrument.

BACKGROUND: Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairment amongst older people, hence proxy reporting is often utilised as the default option. Internationally, there is little evidence on the impact of proxy perspective on interrater agreement between self and proxy report. OBJECTIVES: To assess the impacts of (i) cognition level and (ii) proxy perspective on interrater agreement using a utility instrument, the Quality of Life-Aged Care Consumers (QOL-ACC). METHODS: A cross-sectional study was undertaken with aged care residents and family member proxies. Residents completed the self-report QOL-ACC, while proxies completed two proxy versions: proxy-proxy perspective (their own opinion), and proxy-person perspective (how they believe the resident would respond). Interrater agreement was assessed using quadratic weighted kappas for dimension-level data and concordance correlation coefficients and Bland-Altman plots for utility scores. RESULTS: Sixty-three residents (22, no cognitive impairment; 41, mild-to-moderate cognitive impairment) and proxies participated. In the full sample and in the mild-to-moderate impairment group, the mean self-reported QOL-ACC utility score was significantly higher than the means reported by proxies, regardless of perspective (p < 0.01). Agreement with self-reported QOL-ACC utility scores was higher when proxies adopted a proxy-person perspective. CONCLUSION: Regardless of cognition level and proxy perspective, proxies tend to rate quality of life lower than residents. Further research is needed to explore the impact of such divergences for quality assessment and economic evaluation in aged care.

Improving the Accuracy of Code Status Documentation in Home Care.

Advance care planning discussions require specialized skills to elicit goals and preferences from patients contending with life-limiting illness. Documentation forms which include Health Care Proxies, Medical Orders for Life Sustaining Treatments, or Physician Orders for Life Sustaining Treatments are meant to accompany patients through every transition of care. However, they are often forgotten between the hospital and the home setting. Home care clinicians have the obligation to ensure all providers involved in the patient's care are made aware of their code status and goals of care. Consequently, home care clinicians need education about advance care planning to support patients in achieving their care goals as they transition from hospital to home. This quality improvement project implemented three consecutive interventions including reminding clinicians to review code status orders, applying short educational interventions at daily nursing huddles via email, and finally, administering primary palliative education classes for home care clinicians. The purpose was to guide home care nurses in reviewing and reaffirming code status orders and advance care documentation at the initiation of the home care episode and to improve the consistency and accuracy of code status documentation at the transition of care. After implementing the interventions to improve code status documentation, compliance improved from 8% to 100% in a 10-month period.

Intention to sign an advance directive among nephrology medical staff and its related factors.

BACKGROUND: Advance care planning enables people to record their future health and care wishes and appoint someone as an advocate. An advance directive can be made in the event that a person is incapacitated, so that their wishes are still upheld. The beliefs of the nephrology team might affect patients' choices and willingness to sign an advance directive. To increase the number of dialysis patients who have signed an advance directive, it is necessary to educate the nephrology medical staff. AIM: To explore the intention to sign an advance directive and its related factors among nephrology medical staff. METHODS: A cross-sectional and correlational design was used. This study recruited 160 nephrology medical staff. Data were analysed by using the Statistical Package for Social Science 21.0 for Windows. FINDINGS: The results found that the longer someone has worked as part of the nephology medical staff, the more knowledgeable they were about an advance directive. This led to them being more likely to want to sign an advance directive for themselves. CONCLUSION: In order to improve the knowledge and awareness of advance directives among nephrology medical staff, hospital managers should provide continuing education on this topic.

[Why regulation of active life termination in children remains problematic]. / Waarom een regeling levensbeëindiging bij kinderen problematisch blijft.

The case description regards a nine-years old patient who, as a consequence of a very serious epilepsy syndrome, several forms of comorbidity, severe developmental impairments, and the absence of meaningful contact with relatives, is felt to be in very serious suffering. Parents and physicians decide to end the child's life by withholding nutrition and hydration. Based on this case description and on the parents' experiences, its authors argue in favour of a stately regulated procedure for active life termination. In this comment I argue that the regulation of life termination without a patient request should remain a no-go area. If we allow life termination in children, there is no reason why we should not also allow such requests on behalf of incompetent patients such as handicapped adults and elderly patients with advanced dementia who have not issued an advance directive. Let the very rare cases in which a doctor sees no other option than to terminate an infant's life, remain in the realm of the non-regulated.

Disruptions to HIV services due to the COVID pandemic in the USA: a state-level stakeholder perspective.

BACKGROUND: The United States envisions a 90% reduction in HIV infections by 2030. However, the COVID-19 pandemic disrupted the HIV continuum and disproportionately affected access to social and health services for people at the highest vulnerability. This study shows how stakeholders in the State of Michigan handled disruptions and their key recommendations. As a case study, this study adds to the literature about preparedness for future pandemics. METHODS: We interviewed 33 statewide Michigan HIV/AIDS Council members-practitioners, researchers, and community representatives, guiding service planning, improvement, and resource allocations, measuring group cohesiveness using a tested scale. We measured group cohesiveness as a proxy for how individual opinions reflected those of the Council as a group. We used qualitative questions to assess: (1) how the COVID-19 pandemic disrupted HIV prevention; (2) how disruptions were handled; and (3) recommendation to help address disruptions now and in the future. Using thematic analysis, we coded the interviews. RESULTS: We found a high degree of cohesiveness. Participants agreed that the pandemic disrupted HIV prevention services (e.g., HIV testing, PrEP education, referrals to primary care, etcetera) offered by community organizations, hospital clinics, and health departments across the state. In response, they developed online and curbside services to maintain HIV services, abate social isolation, and address structural issues like lack of food and public transportation. We organized results in four categories: (1) HIV service disruptions (e.g., "Housing for women and children who are fleeing a legal situation"); (2) Responses to disruptions (e.g., "Some of them, we would say, hey, weather permitting, we'll come out to your car"); (3) Minoritized groups disproportionately affected (e.g., "Especially in my community, to get people if there's ever a vaccine, Black people are going to be the last people to take it"); and (4) Recommendations (below). CONCLUSIONS: The pandemic unsettled and further exacerbated every aspect of HIV service provision. The main recommendation was to overhaul communication systems between government and organizations offering HIV services to mitigate disruptions and improve the chances of achieving a 90% reduction.

Guiding the Future: Rethinking the Role of Advance Directives in the Care of People with Dementia.

When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better-informed decisions has led to the development of dementia-specific advance directives, in which people are given tools to help them communicate what their preferences are while they are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia-specific directives and addresses some of the criticisms raised about them.

Home Care Clinicians' Perspectives on Advance Care Planning for Patients at Risk for Becoming Incapacitated With No Evident Advance Directives or Surrogates.

Advance care planning is important and timely for patients receiving home health services; however, opportunities to facilitate awareness and engagement in this setting are often missed. This qualitative descriptive study elicited perspectives of home health nurses and social workers regarding barriers and facilitators to creating advance care plans in home health settings, with particular attention to patients with few familial or social contacts who can serve as surrogate decision-makers. We interviewed 15 clinicians employed in a large New York City-based home care agency in 2021-2022. Participants reported a multitude of barriers to supporting patients with advance care planning at the provider level (eg, lack of time and professional education, deferment, discomfort), patient level (lack of knowledge, mistrust, inadequate support, deferment, language barriers), and system level (eg, discontinuity of care, variations in advance care planning documents, legal concerns, lack of institutional protocols and centralized information). Participants noted that greater socialization and connection to existing educational resources regarding the intended purpose, scope, and applicability of advance directives could benefit home care patients.