The Neighborhood Atlas Area Deprivation Index For Measuring Socioeconomic Status: An Overemphasis On Home Value.

The Area Deprivation Index (ADI), popularized by the Neighborhood Atlas, is a multifaceted proxy measure for assessing socioeconomic disadvantage that captures social risk factors that are not available in typical clinical registries and that are related to adverse health outcomes. In applying the ADI to New York State, we found that the downstate regions (New York City and its suburbs) were as deprived as or more deprived than the other regions for thirteen of the seventeen ADI variables (all but the ones measured in dollars), but the Neighborhood Atlas-computed overall ADI deprivation was much less in the downstate areas. Numerous census block groups with high home values (indicating low deprivation) accompanied by high deprivation in the other ADI variables had overall ADI scores as computed by the Neighborhood Atlas in the same or contiguous deciles as the home values. We concluded that Neighborhood Atlas-computed ADI scores for New York block groups are mainly representative of median home value. This can be especially problematic when considering quality assessment, funding, and resource allocation in regions with large variations in cost of living, and it may result in underresourcing for disadvantaged communities with high housing prices. We conclude that the Neighborhood Atlas ADI would be more accurate for comparing block groups if variables were standardized before computing the overall index.

Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research.

Many people with dementia are interested in taking part in research, including when they no longer have capacity to provide informed consent. Advance research directives (ARD) enable people to document their wishes about research participation prior to becoming decisionally incapacitated. However, there are few available ARD resources. This Australian interview study elicited the views of people aged 55 years and older about the content of an ARD form and guidance booklet and processes to support research planning. Participants (n = 25; 55 to 83 years) had interests in dementia research. All participants described the ARD materials as easy to understand, and all expressed willingness to take part in future research. Nearly half believed that an ARD should be legally enforceable, while others saw it as a nonbinding document to guide decisions about their participation in research. Close family members were preferred as proxy decision-makers. The ARD form and guidance booklet may be adapted for use elsewhere.

'A perfect storm' or missed care? Focus group interviews with dementia care professionals on Advance Care Planning.

BACKGROUND: Dementia is one of the leading causes of dependency and disability among older people and currently the seventh leading cause of death among all diseases. In recent years, healthcare research in Advance Care Planning in dementia care has received increased attention. Advance Care Planning is a discussion process conducted in anticipation of future deterioration of a person's health condition. The purpose of the study was to investigate the views of dementia nurses and geriatricians on Advance Care Planning in dementia care. METHODS: The study design is a qualitative study using semi-structured focus group interviews with dementia care professionals in a region in Western Finland. A total of seventeen dementia care professionals participated. A modified version of the Qualitative Analysis Guide of Leuven was used for the data analysis. RESULTS: The data analysis identified one main theme and three sub-themes describing the views of dementia nurses and geriatricians on Advance Care Planning in dementia care. The main theme was the 'perfect storm' with sub-themes relating to the person with dementia, the care process, and the care professional. The unfavorable circumstances creating a 'perfect storm' are related to the nature of the illness and the associated stigma, to the unclarity in the suggested care path with inadequate guidelines for Advance Care Planning, and to the demands placed on dementia nurses and geriatricians, as well as to insufficient resources. CONCLUSIONS: Dementia nurses and geriatricians acknowledge the importance of advance directives and express a generally positive view of Advance Care Planning in dementia care. They also hold views on a number of factors which affect the conditions for conducting Advance Care Planning. The lack of Advance Care Planning in dementia care can be seen as a form of missed care caused by multiple forces coming together simultaneously.

Refusal of Representation in Advance Care Planning: A Case-Inspired Ethical Analysis.

Unrepresented patients-people without capacity to make medical decisions who also lack a surrogate decision-maker-form a large and vulnerable population within the United States health care system. The burden of unrepresentedness has rightly prompted widespread calls for more and better advance care planning, in which still-healthy patients are encouraged to designate a surrogate decision-maker and thus avoid the risk of becoming unrepresented. However, we observe that some patients, even with available social contacts and access to adequate advance care planning services, simply decline to name a surrogate decision-maker. We propose a novel concept of "informed refusal of representation" ("IRR") to characterize the position held by some such patients, who are often overlooked in prior work on unrepresentedness. We then discuss physicians' ethical obligations in the face of such a refusal and avenues by which physicians can support patients without surrogates in receiving goal-concordant care.

Psychiatric advance directives facilitated by peer workers among people with mental illness: economic evaluation of a randomized controlled trial (DAiP study).

AIMS: We aimed to assess the cost-effectiveness of psychiatric advance directives (PAD) facilitated by peer workers (PW-PAD) in the management of patients with mental disorders in France. METHODS: In a prospective multicentre randomized controlled trial, we randomly assigned adults with a Diagnostic and Statistical Manual of Mental Disorders, fifth edition diagnosis of schizophrenia, bipolar I disorder or schizoaffective disorders, who were compulsorily hospitalized in the past 12 months, to either fill out a PAD form and meet a peer worker for facilitation or receive usual care. We assessed differences in societal costs in euros (€) and quality-adjusted life-years (QALYs) over a year-long follow-up to estimate the incremental cost-effectiveness ratio of the PW-PAD strategy. We conducted multiple sensitivity analyses to assess the robustness of our results. RESULTS: Among the 394 randomized participants, 196 were assigned to the PW-PAD group and 198 to the control group. Psychiatric inpatient costs were lower in the PW-PAD group than the control group (relative risk, -0.22; 95% confidence interval, [-0.33 to -0.11]; P < 0.001), and 1-year cumulative savings were obtained for the PW-PAD group (mean difference, -€4,286 [-4,711 to -4,020]). Twelve months after PW-PAD implementation, we observed improved health utilities (difference, 0.040 [0.003-0.077]; P = 0.032). Three deaths occurred. QALYs were higher in the PW-PAD group (difference, 0.045 [0.040-0.046]). In all sensitivity analyses, taking into account sampling uncertainty and unit variable variation, PW-PAD was likely to remain a cost-effective use of resources. CONCLUSION: PW-PAD was strictly dominant, that is, less expensive and more effective compared with usual care for people living with mental illness.

Associations between Latino ethnicity and the use of emotional support and completion of advance directives.

OBJECTIVES: Latino patients have been shown to engage in advance care planning (ACP) at much lower rates than non-Latino White patients. Coping strategies, such as the use of emotional support, may differentially relate to engagement in ACP among Latino and non-Latino patients. The present study sought to examine the moderating effect of ethnicity on the relationship between the use of emotional support as a coping strategy and completion of advance directives. METHODS: The present study employed a weighted sample (Nw = 185) of Latino and non-Latino White patient participants in Coping with Cancer III, an National Institutes of Health-sponsored, multisite, longitudinal, observational cohort study of patients with advanced cancer and their informal caregivers and oncology providers designed to evaluate Latino/non-Latino disparities in ACP and end-of-life cancer care. Main and interaction effects of Latino ethnicity and use of emotional support on patient use of advance directives were estimated as odds ratios. RESULTS: Use of emotional support was associated with dramatically lower do-not-resuscitate (DNR) order completion to a greater extent among Latino as compared to non-Latino patients (interaction AOR = 0.33, p = 0.005). Interaction effects were not statistically significant for living will or health-care proxy form completion. SIGNIFICANCE OF RESULTS: Use of emotional support is associated with lower odds of completing DNRs among Latino than among non-Latino patients. Seeking and/or receiving emotional support may deter Latino patients from completing DNR orders. Research is needed to address both emotional needs and practicalities to ensure high quality end-of-life care among Latino patients with cancer.

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

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

Information flow among stocks, bonds, and convertible bonds.

This study examines the information flow between convertible bonds (CBs) and other investment assets, such as stocks and bonds. In particular, we employ transfer entropy (TE) as a proxy for the causal effect between the two assets considering that one of the most widely used methods, Granger causality, requires strict assumptions. When adopting TE, we find that asymmetric information flow arising between assets depends on macroeconomic phases. The stock and bond markets affected the CB market prior to and during the global financial crisis, respectively. In the post-crisis period, we find no meaningful information exchange between CBs and other investment assets concerning their return series. However, we observe a significant cause-effect relationship between CBs and stocks in the rise-fall patterns of their price series. The findings suggest that the appearance of one-directional information flow depends on macroeconomic conditions and the level of data, for example, return series or price fluctuations. Accordingly, investors could exploit this pattern predictability in their portfolio management. In addition, policymakers must closely monitor the information flow among the three markets. When any two markets exchange information in a state of strong market integration, unbalanced regulation between them could lead to market distortions and regulatory arbitrage.

Refusal to participate in research among hard-to-reach populations: The case of detained persons.

Providing insights on refusal to participate in research is critical to achieve a better understanding of the non-response bias. Little is known on people who refused to participate, especially in hard-to-reach populations such as detained persons. This study investigated the potential non-response bias among detained persons, comparing participants who accepted or refused to sign a one-time general informed consent. We used data collected in a cross-sectional study primary designed to evaluate a one-time general informed consent for research. A total of 190 participants were included in the study (response rate = 84.7%). The main outcome was the acceptance to sign the informed consent, used as a proxy to evaluate non-response. We collected sociodemographic variables, health literacy, and self-reported clinical information. A total of 83.2% of the participants signed the informed consent. In the multivariable model after lasso selection and according to the relative bias, the most important predictors were the level of education (OR = 2.13, bias = 20.7%), health insurance status (OR = 2.04, bias = 7.8%), need of another study language (OR = 0.21, bias = 39.4%), health literacy (OR = 2.20, bias = 10.0%), and region of origin (not included in the lasso regression model, bias = 9.2%). Clinical characteristics were not significantly associated with the main outcome and had low relative biases (≤ 2.7%). Refusers were more likely to have social vulnerabilities than consenters, but clinical vulnerabilities were similar in both groups. The non-response bias probably occurred in this prison population. Therefore, efforts should be made to reach this vulnerable population, improve participation in research, and ensure a fair and equitable distribution of research benefits.

Validity of ICD codes to identify do-not-resuscitate orders among older adults with heart failure: A single center study.

BACKGROUND: Observational research on the advance care planning (ACP) process is limited by a lack of easily accessible ACP variables in many large datasets. The objective of this study was to determine whether International Classification of Disease (ICD) codes for do-not-resuscitate (DNR) orders are valid proxies for the presence of a DNR recorded in the electronic medical record (EMR). METHODS: We studied 5,016 patients over the age of 65 who were admitted to a large, mid-Atlantic medical center with a primary diagnosis of heart failure. DNR orders were identified in billing records from ICD-9 and ICD-10 codes. DNR orders were also identified in the EMR by a manual search of physician notes. Sensitivity, specificity, positive predictive value and negative predictive value were calculated as well as measures of agreement and disagreement. In addition, estimates of associations with mortality and costs were calculated using the DNR documented in EMR and the DNR proxy identified in ICD codes. RESULTS: Relative to the gold standard of the EMR, DNR orders identified in ICD codes had an estimated sensitivity of 84.6%, specificity of 96.6%, positive predictive value of 90.5%, and negative predictive value of 94.3%. The estimated kappa statistic was 0.83, although McNemar's test suggested there was some systematic disagreement between the DNR from ICD codes and the EMR. CONCLUSIONS: ICD codes appear to provide a reasonable proxy for DNR orders among hospitalized older adults with heart failure. Further research is necessary to determine if billing codes can identify DNR orders in other populations.

"They Would Lift My Spirits": Sources of Support for Family Surrogate Decision-Makers at the End of Life.

Surrogate decision-makers make critical decisions for loved ones at the end of life, and some experience lasting negative psychological outcomes. Understanding whom they rely on for support and the types of support they value may inform nursing care and that of other health team members who work with surrogates. The purpose of the study was to explore decision support and other types of support provided to surrogate decision-makers at the end of life of their loved one and perceived usefulness of the support. This secondary analysis of data from a mixed-methods study involved the examination of the transcripts of qualitative interviews with 13 surrogate decision-makers in the United States, conducted between 2010 and 2014. A constant comparative method was used to identify common themes surrounding surrogate decision support at the end of life. Surrogates valued advance directives and conversations with their loved one about treatment preferences. Surrogates described involving many different types of people in decision-making and other types of support. Finally, surrogates appreciated being reassured that they were doing a good job in making decisions and seemed to seek out this type of affirmation from various sources including the health care team, family, and friends. Nurses are well-positioned to provide this affirmation because of the time that they spend caring for the patient and family. Future research should further explore the concept of affirmation of surrogates in their role as a means of support as they make decisions for a loved one.

The Role of Information and Nudges on Advance Directives and End-of-Life Planning: Evidence From a Randomized Trial.

Despite the substantial personal and economic implications of end-of-life decisions, many individuals fail to document their wishes, which often leads to patient dissatisfaction and unnecessary medical spending. We conducted a randomized trial of 1,200 patients aged 55 years and older to facilitate advance directive (AD) completion and better understand why patients fail to engage in high-value planning. We found that including a physical AD form with paper letters as a nudge to decrease hassle costs increased AD completion by 9.0 percentage points (95% confidence interval [CI] = [4.2, 13.9] percentage points). The intervention was especially effective for individuals aged 70 years and older, as AD completion increased by 17.5 percentage points (95% CI = [5.7, 9.4] percentage points). When compared with the impact of costless electronic reminders, each additional AD completion from the letter interventions costs as little as US$37. Our findings suggest that simple, inexpensive interventions with paper communication as behavioral nudges can be effective, especially in older populations.

Social workers' perspectives about advance directives: A qualitative study.

OBJECTIVES: The study explores medical social workers' perceptions on the importance of and purpose for documenting Advance Directives (ADs) in the United States and their views of the benefits for engaging patients and families in dialogue about ADs and Advance Care Planning (ACP). METHODS: We conducted a qualitative study using free-text responses from a survey of 142 social workers who work in the medical field in various in-patient hospital and out-patient medical/healthcare settings. Participants were asked, "What is the purpose of documenting an advance directive?" and "Why do you think advance directives are important?" and "What benefits have you experienced in educating patients about advance directives?" Thematic analysis informed themes about the purpose, importance, and benefits of supporting patients in completing an AD. RESULTS: Four themes emerged: 1) The purpose of documenting an AD, 2) Facilitating communication, 3) Creating a plan involves relationship building, and 4) Having an AD reduces suffering and uncertainty. CONCLUSION: Social workers have expertise in relationship building which is an essential element of the partnering process with patients and their support systems towards AD completion. PRACTICE IMPLICATIONS: Social workers who work in medical settings provide ACP education for patients and families and create interprofessional linkages to support patient care. It is clear that social workers add value to care provision to improve communication and provide assistance towards AD completion.

Preparing for the End of Life: Medical Students Completing Their Own Advance Directives Described Increased Empathy for Patients.

BACKGROUND AND OBJECTIVES: Family medicine offers the opportunity to integrate advance care planning into routine primary care, connecting relationship-centered orientation with thoughtful action before a terminal diagnosis. However, physicians are undertrained in end-of-life counseling and care. To address this educational gap, we had clerkship students complete their own advance directives and submit a written reflection about the experience. The aim of this study was to learn about how students report on the value of completing their own advance directives, according to their written reflections. We hypothesized that self-described empathy, previously defined as understanding patients' emotions and communicating that understanding back to patients, would increase, as reported by students in their reflections. METHODS: We analyzed 548 written reflections over 3 academic years using a qualitative content analysis approach. An iterative process included open coding, building of themes, and verification with the text by four professionally diverse researchers. RESULTS: After completing their own advance directives, students reported increased empathy for patients facing end-of-life decisions and discussed the intention to change their future clinical practice regarding helping patients plan for the end of life. CONCLUSIONS: Using experiential empathy, an approach to teaching and cultivating empathy in which the participants experience the topic first-hand, we directed medical students to consider their own end-of-life wishes. Upon reflection, many noted this process changed their attitudes and clinical approaches to patients' death. This learning experience could be one meaningful component of a longitudinal and comprehensive curriculum to prepare medical school graduates to help patients plan for and face the end of life.

Spatial and Temporal Analyses of the Event of Death for 1480 in Milan Using the Data Contained in the Sforza's Registers of the Dead.

Historical death registration was conducted primarily to assess the presence of plague. The Liber Mortuorum of Milan was one of Europe's first registers with many socio-demographical details. In this work, we consider 1480 to make spatial and temporal analyses of the event of death to find possible explanations about the events' distribution and the events' trend over time. The spatial analyses involved Moran's I, the LISA, and the heatmaps; the temporal analysis applied the Durbin-Watson test. All the analyses were conducted separately on all subjects (1813), children (765), and adults (1046). Contrade (districts) were considered for spatial analysis. Moran's I and the Durbin Watson test were significant on all subjects and children's analyses, and the LISA showed the same results for those groups. Children may significantly impact the distribution of death and the trend over time. At least half of the children were 0 years old, and survival in the very first childhood period was closely linked to the family, so that it could be a proxy of the conditions of an area.

Henri Wijsbek and Thomas Nys Respond.

The authors respond to a letter by Tim Holland in the January-February 2023 issue of the Hastings Center Report concerning their article "On the Authority of Advance Euthanasia Directives for People with Severe Dementia: Reflections on a Dutch Case.".

On Psychological Continuity and Dementia.

This letter responds to the article "On the Authority of Advance Euthanasia Directives for People with Severe Dementia: Reflections on a Dutch Case," by Henri Wijsbek and Thomas Nys, in the September-October 2022 issue of the Hastings Center Report.