Health Care Proxy Research Articles

Advance Care Planning-further development of the patient advance directive : What the specialist in internal medicine must know

Trotz der zur Verfügung stehenden Vorsorgeinstrumente Patientenverfügung, Vorsorgevollmacht und Betreuungsverfügung ist der Behandlungswille des Patienten in der konkreten Situation oft nicht in handlungsleitender Weise bekannt. Ziele des systemisch angelegten Konzepts „Behandlung im Voraus Planen“ – advance care planning, sind die Ermittlung, Dokumentation und Umsetzung des Behandlungswillens des Patienten für den Fall, dass er selbst nicht (mehr) rechtsverbindlich über seine Behandlung entscheiden kann. Auf der individuellen Ebene unterstützt ein speziell geschulter Gesprächsbegleiter zunächst bei der Formulierung der Einstellungen zu Leben, schwerer Erkrankung und Sterben. Darauf aufbauend können die Behandlungswünsche für verschiedene medizinische Situationen besprochen und z. B. in einer Patientenverfügung dokumentiert werden. Hierzu gehören der Notfall, die Situation im Krankenhaus bei unklarer Dauer der Einwilligungsunfähigkeit und die Situation bei dauerhaftem Verlust der Einwilligungsfähigkeit. Durch achtsame, nichtdirektive Gesprächsführung im Sinne einer gemeinsamen Entscheidungsfindung („shared decision making“) wird der Vorausplanende befähigt, gut informiert und reflektiert zu entscheiden („informed consent“). Die an den zukünftigen Behandlungsentscheidungen beteiligten Personen, insbesondere der zukünftige Vertreter, werden möglichst frühzeitig einbezogen. Die institutionelle und regionale Implementierung des Konzepts fördert die Umsetzung des auf diese Weise ermittelten und wirksam dokumentierten Patientenwillens in der gesamten Versorgungskette. Durch den neuen § 132 g SGB V, der den Einrichtungen der stationären Altenhilfe und der Eingliederungshilfe ermöglicht, Behandlung im Voraus Planen zulasten der GKV anzubieten, ist eine zunehmende Verbreitung des Konzepts zu erwarten.Zusatzmaterial onlineDie Online-Version dieses Beitrags (10.1007/s00108-022-01333-9) enthält die Muster-Patientenverfügungen der DiV-BVP „Einstellung zu Leben, schwere Krankheit und Sterben“ und „Ärztliche Anordnung für den Notfall“ (© Deutsche interprofessionelle Vereinigung Behandlung im Voraus Planen e.V. (DiV-BVP), Frankfurt am Main, www.div-bvp.de).

Technical Design and Development of a Self-Sovereign Identity

Objective: Clinical data in the United States is highly fragmented, stored in numerous different databases, and are defined by service providers or clinical specialties rather than by individuals or their families. As a result, linking or aggregating a complete record for a patient is a major technological, legal, and operational challenge. One factor that has made clinical data integration so difficult to achieve is the lack of a universal ID for everyone. This leads to other related problems of having to prove identity at each interaction with the health system and providing basic information about demographics, insurance, payment, and medical conditions repeatedly. Traditional solutions that require complex governance, expensive technology, and risks to privacy and security of the data have failed to solve this interoperability problem adequately. We describe the technical design decisions of a patient-centric decentralized health identity management system using blockchain technology, called MediLinker, to address some of these challenges. Design: Our multi-disciplinary research group developed and implemented an identity wallet, that uses blockchain technology to manage verifiable credentials issued by healthcare clinics, banks, and insurance companies. To manage patient’s self-sovereign identity, we leveraged the Hyperledger Indy blockchain framework to store patient’s decentralized identifiers (DIDs) and the schemas or format for each credential type. In contrast, the credentials containing patient data are stored “off-ledger” in each person’s wallet and accessible via a computer or smartphone. We used Hyperledger Aries as a middleware layer (API) to connect Hyperledger Indy with the front-end, which was developed using a JavaScript framework, ReactJS (Web Application) and React Native (iOS Application). Results: MediLinker allows users to store their personal data on digital wallets, which they control. It uses decentralized trusted identity using Hyperledger Indy and Hyperledger Aries. Patients use MediLinker to register and share their information securely and in a trusted system with healthcare and other service providers. Each MediLinker wallet can have six credential types: Health ID with patient demographics, insurance, medication list including COVID-19 vaccination status, credit card, medical power of attorney (MPOA) for guardians of pediatric or geriatric patients, and research consent. The system allows for in-person and remote granting and revoking of such permissions for care, research, or other purposes without repeatedly requiring physical identity documents or enrollment information. Conclusion: We have successfully developed and tested a blockchain-based technical architecture, described in this paper, as an identity management system that may be operationalized and scaled for future implementation to improve patient experience and control over their personal information.

Technical Design and Development of A Self-Sovereign Identity Management Platform for Patient-Centric Health Care Using Blockchain Technology.

Clinical data in the United States are highly fragmented, stored in numerous different databases, and are defined by service providers or clinical specialties rather than by individuals or their families. As a result, linking or aggregating a complete record for a patient is a major technological, legal, and operational challenge. One of the factors that has made clinical data integration so difficult to achieve is the lack of a universal ID for everyone. This leads to other related problems of having to prove identity at each interaction with the health system and repeatedly providing basic information on demographics, insurance, payment, and medical conditions. Traditional solutions that require complex governance, expensive technology, and risks to privacy and security of the data have failed adequately to solve this interoperability problem. We describe the technical design decisions of a patient-centric decentralized health identity management system using the blockchain technology, called MediLinker, to address some of these challenges. Our multidisciplinary research group developed and implemented an identity wallet, which uses the blockchain technology to manage verifiable credentials issued by healthcare clinics, banks, and insurance companies. To manage patient's self-sovereign identity, we leveraged the Hyperledger Indy blockchain framework to store patient's decentralized identifiers (DIDs) and the schemas or format for each credential type. In contrast, the credentials containing patient data are stored 'off-ledger' in each person's wallet and accessible via a computer or smartphone. We used Hyperledger Aries as a middleware layer (API: Application Programming Interface) to connect Hyperledger Indy with the front-end, which was developed using a JavaScript framework, ReactJS (Web Application) and React Native (iOS Application). MediLinker allows users to store their personal data on digital wallets, which they control. It uses a decentralized trusted identity using Hyperledger Indy and Hyperledger Aries. Patients use MediLinker to register and share their information securely and in a trusted system with healthcare and other service providers. Each MediLinker wallet can have six credential types: health ID with patient demographics, insurance, medication list including COVID-19 vaccination status, credit card, medical power of attorney (MPOA) for guardians of pediatric or geriatric patients, and research consent. The system allows for in-person and remote granting and revoking of such permissions for care, research, or other purposes without repeatedly requiring physical identity documents or enrollment information. We successfully developed and tested a blockchain-based technical architecture, described in this article, as an identity management system that may be operationalized and scaled for future implementation to improve patient experience and control over their personal information.

The Sound of Music: Short-term Effects of Live Music Performance on the Cognitive and Emotional Statuses of Residential Patients with Major Neurocognitive Disorder

<h3>Introduction</h3> Patientswith neurocognitive disorders (NCD) commonly experience a range of psychiatric symptoms such as depression, anxiety, psychosis, and agitation.¹ These comorbidities complicate the course of treatment for these patients as well as exacerbate caregiver burden. Since pharmacologic interventions are known to pose significant risks to these patients, there is great urgency to find additional non-pharmacologic options to improve quality of care.¹ Music therapy is becoming a more frequently used tool in different treatment settings and has been shown to improve anxiety and depression, however intensive and structured music therapy can also be a cost burden for residential facilities.^2,3 This study's aim was to assess the short-term benefits of a live music performance for residential patients with mild and moderate major NCD. <h3>Methods</h3> Thisis a prospective, non-blinded, longitudinal comparison study. Inclusion criteria were age 65-100, English speaking, and had either a diagnosis of major NCD, cognitive disorder, or dementia of the mild to moderate stage that required institutionalization at a residential facility. Exclusion criteria were severe presbycusis, and diagnosis of dementia or NCD of the severe stage. Participating residential facilities with connections to the Symphony of Soul Foundation and St. David's Foundation were asked to publicize this study to residents and their legally authorized representatives (LAR). The participants would then provide informed assent and consent, respectively, to enroll. The study intervention was a 30 minute live-performance of a set list of popular music from the 1930s-1950s (English language), given by a standard performer. The main statistical analysis will be a multivariate repeated measures comparison of scores that assess cognition, depression, and quality of life using the Montreal Cognitive Assessment (MoCA), Geriatric Depression Scale (GDS), and the Cornell-Brown Scale for Quality of Life (CBSQoL). The scales were administered 1 week before the study intervention to participating subjects for baseline scores, and then re-administered 1 week after the intervention. Different versions of the MoCA (v.1 and v.2) were used for the pre- and post-intervention assessments. <h3>Results</h3> Atotal of 8 subjects (n=8) and their respective LARs provided assent and consent to participate in the study. There was 1 complete dropout before the study began. The mean MoCA score pre-intervention, MoCA_pre = 7.3, with a 95% CI = [2.36, 12.25]; the mean MoCA score post-intervention, MoCA_post = 9.4, with a 95% CI = [3.41, 15.39]; the difference between the two mean MoCA scores was not statistically significant, since the 95% CI for this difference was [-5.65, 9.85]. Subjects did not have scores that indicated clinical depression throughout the study, with a mean GDS_pre = 1.5, and a mean GDS_post = 2.2. The mean CBSQoL_pre = -3.67, with a 95% CI = [-10.91, 3.57]; the mean CBSQoL_post = 17, with a 95% CI = [10.86, 23.14]; the CBSQoL scores between the two groups had statistically significant difference as evident in non-overlapping CIs; the 95% CI for the difference between the two mean CBSQoL scores was [11.19, 30.15]. <h3>Conclusions</h3> Thisstudy's initial results suggested that there was a statistically significant improvement in the subjects' quality of life after a brief, live-musical performance. However there were no significant differences in the subjects' cognition and mood. The labor intensity behind completing the pre- and post- intervention assessments was a notable barrier for subjects to participate effectively, and was also a deterrent for other eligible subjects to enroll in the study. Decreasing the difficulty for subjects to participate in the future (e.g., through optimizing the testing environment, shortening the music performance) might therefore increase the sample size and improve the study's power and validity.

Main Family Caregiver

Seriously ill people are often unable to oversee their illness or live their lives independently. Nor are they always able to make responsible medical based decisions. Family caregivers can fill this gap. Often one particular family member assumes this role. This person is termed the main family caregiver (MFC). The motivating factors for taking on this demanding voluntary role are complex and variable. Legal designations such as advanced directives or medical power of attorney, where they exist, may, at most, clarify the delegation of authority to the MFC but do not provide guidelines regarding fulfilling their role. Furthermore, this delegation is often informal or de facto rather than official or legal. In addition, a changing situation such as a deterioration of the patient may render a previous formal arrangement no longer relevant. Their task is complex because of the various demands made upon them, which may include technical skills, making crucial decisions and possible ethical conflicts. Moreover, the medical system, with its patient chart-based approach often does not address MFC involvement, even when critical and decisive. As the patient’s condition deteriorates, the nature of the MFC relationship with the patient evolves from primarily a family member to primarily a caregiver role. In the course of time, the MFC may find themselves overwhelmed or unable to perform their tasks competently. In short, the medical system frequently fails to acknowledge or take into account the important challenging and helpful role that the MFC plays in patient care. The attending physician, along with the treatment team, should guide and support the MFC in order to optimize their role in supporting their loved one.

Evaluating first year residents’ communication skills: a health literacy curriculum needs assessment

ABSTRACT Background High quality communication skills are necessary for competent and ethical practice. When patients present with low health literacy, physicians’ skills may be lacking, which can put patients’ safety and satisfaction at risk. The authors’ developed and executed a simulation-based needs assessment following conflicting internal reports about the communications skills of new residents. Methods The current study recruited first year residents (N = 30) during the 2019 first post-graduate year (PGY-1) orientation at a southeastern university hospital simulation center. The residents completed an Objective Structured Clinical Examination (OSCE) which focused on obtaining informed consent from a patient’s health care proxy who presented with limited literacy and health literacy and poor communication skills. After completing the OSCE, the residents, simulated patients (SP), and independent observers assessed the residents’ performance. Results Residents assessed their performance higher when compared with the ratings from independent observers and patient raters. Residents who spent more time with SPs were given higher ratings by the SPs and independent observers. Finally, residents’ ratings of themselves had a positive correlation with their reported confidence, but no correlation between self-confidence and the ratings provided by SPs or observers. Conclusion PGY-1 residents demonstrate a continued need for health literacy and informed consent education, despite faculty believing that these skills were covered enough in medical school. These residents also demonstrated limited self-assessment ability or skills below the expectations of health literacy experts. Curriculum changes included improving the focus on health literacy, communication skills, and additional practice opportunities throughout their internship year.

A qualitative exploration of the feasibility and acceptability of Meaning-Centered Psychotherapy for Cancer Caregivers.

Caregivers of patients with cancer are at significant risk for existential distress. Such distress negatively impacts caregivers' quality of life and capacity to serve in their role as healthcare proxies, and ultimately, contributes to poor bereavement outcomes. Our team developed Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C), the first targeted psychosocial intervention that directly addresses existential distress in caregivers. Nine caregivers of patients with glioblastoma multiforme (GBM) enrolled in a pilot randomized controlled trial evaluating the feasibility, acceptability, and effects of MCP-C, and completed in-depth interviews about their experience in the therapy. One focus group with three MCP-C interventionists was also completed. Four key themes emerged from interviews: (1) MCP-C validated caregivers' experience of caregiving; (2) MCP-C helped participants reframe their "caregiving identity" as a facet of their larger self-identity, by placing caregiving in the context of their life's journey; (3) MCP-C enabled caregivers to find ways to assert their agency through caregiving; and (4) the structure and sequence of sessions made MCP-C accessible and feasible. Feedback from interventionists highlighted several potential manual changes and overall ways in which MCP-C can help facilitate caregivers' openness to discussing death and engaging in advanced care planning discussions with the patient. The overarching goal of MCP-C is to allow caregivers to concurrently experience meaning and suffering; the intervention does not seek to deny the reality of challenges endured by caregivers, but instead to foster a connection to meaning and purpose alongside their suffering. Through in-depth interviews with caregivers and a focus group with MCP interventionists, we have refined and improved our MCP-C manual so that it can most effectively assist caregivers in experiencing meaning and purpose, despite inevitable suffering.

Is Primary Care Physician Involvement Associated with Earlier Advance Care Planning?: A Study of Patients in an Academic Primary Care Setting.

Background: Advance care planning (ACP) is important to improving end-of-life care. Few studies have examined the impact of primary care physician (PCP) involvement in ACP. Objectives: To determine whether complete ACP, defined as health care proxy (HCP), provider orders for life-sustaining treatment (POLST), and documented goals-of-care (GOC) conversations, would occur earlier when the PCP was involved in POLST and/or GOC conversations. Design: Charts of deceased patients from 2015 to 2017 in a U.S. academic primary care practice were reviewed. Demographic factors, mortality risk scores, palliative care involvement, and visits within the last year of life to PCPs and specialists were collected. Poisson models with robust variance estimators were used to estimate the likelihood of PCP involvement being associated with earlier complete ACP after adjusting for confounders and accounting for clustering by PCP. Due to high rates of HCP documentation at the institution, 10 patients without HCP were excluded from the review. Results: Of 403 decreased patients, 71 (18%) met criteria for complete ACP and 214 (53%) had HCP only; the remaining 118 patients had partial (2/3 components) ACP. Of the 71 patients with complete ACP, 40.1% had ACP earlier than three months of death (early) and 59.2% had ACP within three months of death (late). PCP involvement was associated with early ACP compared with late ACP and HCP only for both PCP completion of the POLST (risk ratio [RR]: 4.7; 95% confidence interval [CI]: 1.3-17.1) and for PCP documentation of GOC conversation (RR: 4.6; 95% CI: 1.2-17.1) after adjustment for clustering by PCP and other relevant variables. Conclusion: This retrospective cohort study suggests that PCP involvement in ACP correlates with earlier completion. This finding highlights the importance of educating and encouraging PCPs on completing ACP with their patients.

Chapter 11 - Prognostication in dementia

Dementia is a progressive, irreversible illness and leading global cause of death defined by cognitive and subsequent functional decline. Current treatments have limited impact on mortality. In this chapter, we discuss the trajectory of dementia and its variability, markers associated with poorer prognosis (such as poor nutrition, pneumonia, comorbid conditions), the impact of hospitalization on prognosis, and current models of end-of-life palliative care/hospice eligibility (with the use of the Functional Assessment Staging tool and other markers). We then discuss strategies to discuss prognosis with patients and their healthcare proxies using a mental model (Ask, Discover, Anticipate, Provide, Track: ADAPT) and specific skills. Because of progression of dementia variability, prognosis is better discussed in terms of function. For patients with dementia, initiating advance care planning earlier in their disease course allows for more patient involvement (such as to identify a surrogate decision maker).

Commentary on “Remote Advance Care Planning in the Emergency Department During COVID-19 Disaster: Program Development and Initial Evaluation”

Commentary on “Remote Advance Care Planning in the Emergency Department During COVID-19 Disaster: Program Development and Initial Evaluation”

Assessing Quality in Advance Care Planning Documentation: A Survey of Current Methods.

High-quality advance care planning (ACP) documentation facilitates the communication of patients' wishes as they progress in their disease course and travel between health care settings. No consensus exists regarding evaluation of documentation quality, and diverse strategies for assessing quality have been adopted in clinical ACP studies. We conducted a literature review in PubMed and via manual search to identify clinical studies that assessed ACP quality or completeness as an outcome measure over a 5-year period. Studies that treated ACP as a binary outcome variable (present or absent), studies that took place outside of the US, and studies in pediatric populations were excluded from review. We identified 11 studies for inclusion in our review. Across study methodologies, the following 8 quality domains were identified: discussion frequency, documentation accessibility, discussion timing, health care proxy, health goals or values, scope of treatment/code status, prognosis/illness understanding, and end of life (EOL) care planning. Each study assessed between 2 and 6 domains. Divergent methods for assessing quality domains were utilized, including manual qualitative analysis and natural language processing techniques. Defining and measuring the quality of documentation is critical to developing ACP programs that improve patient care. Our review provides an adaptable framework centered around quality domains.

A review and content analysis of U.S. Department of Corrections end-of-life decision making policies

PurposeWith a rapidly growing population of older adults with chronic illness in US prisons, the number of people who die while incarcerated is increasing. Support for patients’ medical decision-making is a cornerstone of quality care for people at the end of life (EOL). This study aims to identify, describe, and analyze existing policies regarding EOL decision-making in U.S. Departments of Corrections.Design/methodology/approachThis study performed an iterative content analysis on all available EOL decision-making policies in US state departments of corrections and the Federal Bureau of Prisons.FindingsThis study collected and reviewed available policies from 37 of 51 prison systems (73%). Some areas of commonality included the importance of establishing health-care proxies and how to transfer EOL decision documents, although policies differed in terms of which patients can complete advance care planning documents, and who can serve as their surrogate decision-makers.Practical implicationsMany prison systems have an opportunity to enhance their patient medical decision-making policies to bring them in line with community standard quality of care. In addition, this study was unable to locate policies regarding patient decision-making at the EOL in one quarter of US prison systems, suggesting there may be quality-of-care challenges around formalized approaches to documenting patient medical wishes in some of those prison systems.Originality/valueTo the best of the authors’ knowledge, this is the first content analysis of EOL decision-making policies in US prison systems.

Mapping the Landscape of Advance Care Planning in Adolescents and Young Adults Receiving Allogeneic Hematopoietic Stem Cell Transplantation: A 5-Year Retrospective Review

Allogeneic hematopoietic stem cell transplantation (HSCT) carries significant risks of morbidity and mortality. Participation in advance care planning (ACP) is crucial to promote patient-centered care and has been shown to have positive impacts on patients, caregivers, and providers. Historically, both HSCT recipients and adolescents and young adults (AYAs) are significantly less likely to engage in ACP. We sought to characterize ACP utilization in AYAs undergoing HSCT by evaluating the frequency of different types of ACP documentation over time and identifying demographic and clinical factors associated with documentation of each type of ACP. We conducted a single-center retrospective review of the electronic health record (EHR) of AYAs (age 15 to 39 years) who underwent allogeneic HSCT between 2015 and 2020. EHR documents were screened for 3 predefined categories of ACP: (1) advance directives (ADs) or medical orders (MOs), which included proof of signed paper directives, expressions of preferred code status, and identification of a healthcare proxy; (2) goals of care (GOC) conversations, which included discussions of medical care in a specific situation informed by patients' priorities; and (3) other ACP conversations, which included more general discussions of patients' values regarding their care or legacy wishes. Documents were coded by 2 researchers, and discrepant categorizations were reviewed by a third researcher. Patients age <18 years on the day of transplantation were excluded in the analyses of AD/MO documentation. Univariate and multivariate logistic regression were used to test for associations between patient factors and documentation of each type of ACP. For deceased patients, Kaplan-Meier curves were created to illustrate the time-to-event relationship between days before death and documentation of each type of ACP. Sixty-eight thousand documents associated with 219 patients were reviewed, and 666 ACP documents associated with 190 patients were identified. Few of the 219 patients had documented GOC (n=29; 13%) or other ACP conversations (n=81; 37%). A subset of patients (n=28; 13%) had no documented ACP. Most of the 201 patients age ≥18 years had a documented AD/MO (n=172; 86%). No tested factors were significantly associated with documentation of ADs/MOs. GOC and other ACP conversations were more likely to occur in patients with a palliative care consult, and patients with a malignant diagnosis were also more likely to engage in GOC conversations. More than 50% of the documentation occurred in the subset of 39 deceased patients, with one-half of AD/MO documentation in the last 67 days of life, one-half of other ACP documentation in the last 20 days of life, and one-half of GOC documentation in the final 2 days of life. Although the majority of AYA patients receiving HSCT did have documentation of ADs/MOs, few patients had documented GOC or other ACP conversations. The bulk of all ACP conversations occurred in patients that ultimately died and who were very close to the end of life. Our results support ongoing efforts to improve the implementation of ACP in this vulnerable population, particularly for those undergoing HSCT for nonmalignant conditions.

Implementation of 4M Age-Friendly Care in Arkansas Rural Primary Care Clinics Led to Improved Advance Care Planning

The 4Ms Age-Friendly Framework has been introduced and implemented into nearly 2,000 primary care practices across the United States by Geriatric Workforce Enhancement Program’s (GWEP) educational efforts. The AR Geriatric Education Collaborative, the GWEP in Arkansas, has provided monthly trainings to a rural federally qualified healthcare clinic system and educated clinicians about how to complete a Medicare Annual Wellness Visit (AWV) that was inclusive of an advance care plan. Specific educational training including the two main components of an ACP: living will preferences and medical power of attorney were reviewed as their role into “What Matters” was explained. Before 4Ms Age Friendly training, baseline data showed only 7% of older adults (OAs) had an established ACP in site 1 and 33% in site 2. After training, the rate of ACP rose to 47% in site 1 and 59% in site 2. During the training, not only were the two main components reviewed but case studies were provided about what questions to ask surrounding the “What Matters” question as a guide to further discuss an OAs wishes, priorities and end-of-life care. This project demonstrated that implementation of 4Ms Age-Friendly Care not only improves the completion of advance care plans but also further enhances the overall care of the older adult when “what matters” most to the older adults is known and communicated.

Creation of a Latin-American Dementia Advance Care Planning Guide

The LEAD Guide (Life-Planning in Early Alzheimer’s and Dementia) is an advance care planning conversation guide for use within the context of dementia (Dassel et al., 2019). Considering that Latino adults have the highest risk of ADRD, a culturally sensitive and translated Spanish version of the LEAD Guide was needed. Therefore, the objective of this study was to: 1) translate the LEAD Guide into a Latin-American Spanish version (i.e., LA LEAD) and 2) assess the applicability and acceptability of the LA LEAD through focus groups with Latino older adults. First, the LEAD Guide was translated into a “neutral” Spanish version. Second, forward and backward translation was conducted to create the LA LEAD. Third, two 1.5-hour focus groups with Spanish-speaking Latino adults age 50+ who were: a) healthy adults (N=7) or b) current or previous dementia caregivers (N=7) were held. The focus groups were recorded, translated, and transcribed for descriptive analysis, which revealed three domains regarding the LA LEAD: 1) Family Dynamics: the guide could help prevent family conflict, designate a health care proxy, and reduce burden; 2) Cultural Expectations: acknowledgement of cultural nuances between LA countries, the familial responsibility of caring for family in the home, and the influence of religion on end-of-life care decisions, and 3) Health Literacy: lack of knowledge about advance care planning conversations, documentation, and dissemination. This process resulted in the creation of a validated LA LEAD Guide, which is a culturally and linguistically appropriate and acceptable advance care planning tool for Latino older adults.

Creation of a Latin-American Dementia Advance Care Planning Guide

American Heart Association’s (AHA) Life’s Simple 7 (LS7), an index of cardiovascular health risks, has been associated with worse brain outcomes but few examined this relationship in midlife. We examined whether LS7 scores at midlife were associated with brain morphometry in early old age. Participants were 471 men who participated in the Vietnam Era Twin Study of Aging. The LS7 index was assessed at mean age 62 (range 55-66) and 68 (range 61-71) and included smoking, physical activity, diet, body mass index, cholesterol, glucose, and blood pressure. Each factor was coded, per AHA criteria, on a 3-point scale (0/poor-2/ideal) and summed to create a composite score (0-14). At mean age 68, participants underwent structural magnetic resonance imaging, which was used to create the previously validated brain measures. Scores included: the ratio of abnormal white matter to white matter, and two Alzheimer’s disease brain signatures (cortical thickness/volume signature and a mean diffusivity (MD) signature). Analyses controlled for age, education, income, ethnicity, and APOE genotype. Concurrently at mean age 68, the LS7 was associated with cortical thickness/volume (F=4.85, p = .028), MD (F=10.89, p = .001) signatures and abnormal white matter ratio (F=14.04, p < .001). Prospectively, the LS7 at mean 62 was significantly associated with age 68 cortical thickness/volume (F=5.08, p = .025) and MD (F=5.54, p = .019) signatures but not with abnormal white matter ratio. These results suggest that prevention strategies that promote heart healthy behaviors could have implications for healthy brain aging.

Characterizing Patients and Themes of SARS-CoV-2 Vaccine Hesitancy in a New York City High-Risk Older Population

Background: Vaccines to prevent SARS-CoV-2 infection are deemed one of the most promising measures in controlling the devastating pandemic, yet there is significant vaccine hesitancy in some communities. Historic systemic health, discrimination, and structural inequities in specific racial and ethnic communities contribute to vaccine hesitancy with disproportionately negative impact. It is therefore critical to better understand vaccine hesitancy in this high-risk older population. The ALIGN (Acute Life Interventions, Goals, and Needs) program co-manages a panel of older patients with complex medical and psychosocial needs in an urban academic medical center. Methods: ALIGN enrolled or graduated Patients or designated healthcare proxies were contacted by telephone to discuss SARS-CoV-2 vaccine willingness and hesitancy using a standardized web-based survey. Qualitative data was categorized into themes and subgroups. Demographic data was collected by chart review. Results: Complete results are forthcoming and will include patient reported race and ethnicity baseline, vaccine hesitancy perceptions, with common overarching themes, and clinical team member debriefing. Iterative quality improvement actions taken based on elicited patient themes will also be included and assessed in telephone follow-up for changes in vaccine hesitancy. Conclusions: We are conducting a qualitative and quality improvement study characterizing vaccine perceptions and hesitancy in a high-risk older group with focus on racial and ethnic disparities in this population. This preliminary data informs healthcare providers of potential health literacy, cultural and language, and other potential barriers in order to help further understand how to optimize SARS-CoV-2 vaccine acceptance and delivery in a patient population with elevated risk.

Tissue plasminogen activator for the treatment of adults with critical COVID-19: A pilot randomized clinical trial

Tissue plasminogen activator for the treatment of adults with critical COVID-19: A pilot randomized clinical trial

The impact of APOE genotype disclosure on lifestyle behaviors and decisions about future directives

AbstractBackgroundStudies have shown apolipoprotein E (APOE) genotype disclosure to be safe and well tolerated in cognitively unimpaired (CU) older adults. Genotyping can be valuable to modifiable lifestyle intervention studies as it provides important Alzheimer’s disease (AD) risk information. As such, the goal of this study is to examine the impact of the disclosure process itself on lifestyle behaviors and decisions about future directives in community‐dwelling CU older adults from the Butler Alzheimer’s Prevention Registry (BAPR).MethodCognitively unimpaired APOE &amp;epsilon;4 non‐carriers (n= 106) and carriers (n= 80) aged 58‐78 from the BAPR first completed in‐person psychological readiness screening and genotyping followed by APOE disclosure. Follow‐up assessments were completed online 3 days, 6 weeks and 6 months post disclosure. The primary outcomes were scores on self‐reported measures of physical activity, diet, and decisions about future directives.ResultPost‐disclosure, non‐carriers were more likely to report future directive change towards decisive action on will or estate planning at 3 days follow‐up, healthcare proxy and long‐term living arrangement planning at 6 weeks, and life insurance planning at 6 months. Further, non‐carriers were more likely to report having a long‐term planning discussion with their families at 6 months than carriers. No significant differences were found between non‐carriers and carriers on any of the self‐reported measures of modifiable lifestyle factors (all p&gt; .10).ConclusionIn a clinical research setting, APOE genotype disclosure has been shown to be safe, well tolerated, and in one study, to increase enrollment in ongoing clinical AD research studies. Disclosure led to more decisive actions on future directives in non‐carriers. Disclosure did not lead to changes in modifiable lifestyle factors, an indication that disclosure alone may not be sufficient to inspire behavioral change. Future work will investigate whether pairing disclosure with education about the role of lifestyle factors in AD risk and providing guidelines on making risk‐lowering lifestyle modifications as an intervention approach engenders positive change.

PREP Act immunity does not apply to unauthorized hydroxychloroquine administration

Under the Public Readiness and Emergency Preparedness (PREP) Act, there is legal protection from liability for those who perform specially authorized emergency activities during a pandemic. The PREP Act states “a covered person shall be immune from suit and liability under Federal and State law with respect to all claims for loss caused by, arising out of, relating to, or resulting from the administration to an individual of a covered countermeasure.” A recent case illustrates that there can be limits on the applicability of PREP Act immunity. A patient resided in a “senior living community.” On April 20, 2020, the patient tested positive for COVID-19, although she was “completely asymptomatic.” Two days later, a nurse assistant called the patient's son, who served as the patient's medical power of attorney. The nurse assistant wanted to “commence treating the patient with hydroxychloroquine for five days.” The son did not consent to this plan due to his mother's history of heart issues. Nevertheless, the mother was allegedly administered hydroxychloroquine for 5 days without consent. The patient “fell ill and her condition deteriorated.” On May 4, 2020, the patient died, reportedly due to “a cardiac event and COVID-19.” The patient's family sued the senior living facility. The plaintiffs asserted various legal claims, including negligence, reckless and outrageous conduct, and wrongful death. The defendant facility filed a motion to dismiss the case based on PREP Act immunity. The court considered whether the administration of hydroxychloroquine in this manner qualified as a “covered countermeasure” for purposes of PREP Act immunity. The defendant contended that on March 28, 2020, FDA issued an emergency use authorization (EUA) for hydroxychloroquine. Based on this EUA, the defendant argued that the hydroxychloroquine administered to the patient was a “covered countermeasure,” and that PREP Act immunity should apply. The plaintiffs directed the court's attention to the “fine print” of the March 28 EUA. The EUA stated that “the hydroxychloroquine sulfate may only be used to treat adult and adolescent patients who weigh 50 kg or more, hospitalized with COVID-19, for whom a clinical trial is not available, or participation is not feasible.” The court acknowledged the plaintiffs' contention that the patient was not in a hospital, was never hospitalized for her asymptomatic COVID-19, and that it had never been determined that the patient was ineligible for a clinical trial or that her participation was not feasible. In ruling on the defendant's motion to dismiss, the court concluded that the “Defendants' administration of hydroxychloroquine sulfate does not fall within the clear, explicit, and limited scope of the drug's FDA emergency use authorization. Therefore, based on these allegations, the administration of the treatment as defendants used it cannot be considered a covered countermeasure because it was not ‘authorized for investigational or emergency use, as those terms are defined in the [FDCA Food, Drug, & Cosmetic Act],' as required by the PREP Act.” The motion to dismiss was denied. This case teaches one of many lessons to be learned from the COVID-19 pandemic. If there is any silver lining to the dark cloud of a global pandemic, it is that improvements can be made to the way things were done, and the next epidemic or pandemic can be managed more efficiently and productively. An EUA is not an open invitation to use a drug in any way that a health care institution chooses to use it. PREP Act immunity only extends to the use of a drug consistent with the guidelines and limitations specified in an EUA. Read the EUA to learn those guidelines and limitations. The hydroxychloroquine EUA was revoked 6 weeks after this patient died. The important lesson of this case is that administration of a drug contrary to EUA guidance, and without patient consent, exposes an institution to a risk of legal liability. There is no PREP Act immunity.