Dementia in the incarcerated population: a retrospective study using the South Carolina Alzheimer's disease registry, USA.

PURPOSE: Research about the prevalence of dementia among older adults in the incarceration system is currently lacking, and further investigation is warranted. Considering the high level of healthcare needs, unique behavioural issues and difficulty to rehabilitate within the system due to its punitive approach and lack of effective rehabilitation programs, further investigation is warranted to characterize and determine the number of incarcerated older adults with dementia. The purpose of this study is to estimate the prevalence of individuals with dementia in the prison system while also describing the incarceration, demographic and offence-related characteristics of this unique population. DESIGN/METHODOLOGY/APPROACH: South Carolina (SC) Alzheimer's Disease and Related Dementias Registry (1992-2016) and South Carolina Department of Corrections (SCDC) data (Fiscal years 1992-2019) were cross-referenced. The prevalence of Alzheimer's disease and related dementias (ADRD) cases in the corrections system was calculated using South Carolina Alzheimer's Disease (SC AD) SC ADRD Registry and SCDC data. Pearson's correlation coefficients were calculated to determine strength and direction of relationships between year of incarceration and frequency of ADRD cases both prior to and after incarcerations, respectively. Significant differences by age group, race, gender and dementia type were determined using a two-tailed pooled t-test and Bonferroni approach where appropriate. Count data for types of crimes committed are also presented. FINDINGS: The linkage showed that there were 2,171 individuals within the SC AD Registry who have been in the corrections system, about 1% of those in the Registry. Of these individuals, 1,930 cases were diagnosed with ADRD after incarceration and 241 prior to incarceration. In 2016, 317 individuals with ADRD were incarcerated. For ages 55 and above in South Carolina, the prevalence of ADRD is 6.7% in the general, non-incarcerated population compared to 14.4% in the incarcerated population. Additional results showed that those diagnosed with ADRD between 55 and 65 years of age had a significantly lower mean age at first incarceration (34.6 years of age) than those diagnosed between 66 and 74 years of age (55.9 years of age), indicating that those incarcerated earlier in life had an earlier dementia diagnosis. Additionally, African Americans had a significantly lower mean age at first incarceration (43.4 years of age) than Whites (46.2 years of age) and females had significantly lower mean age at first incarceration (42.9 years of age) than males (45 years of age). When investigating trends, results showed a significant positive linear association between year and frequency of ADRD diagnoses (p-value < 0.05) for those with ADRD diagnosis prior to incarceration and a significant decreasing linear association (p-value < 0.0001) in the number of individuals with an ADRD diagnosis after corrections. Findings also showed that a large percentage of older adults with ADRD in prison did not commit a violence offence. ORIGINALITY/VALUE: This study links a population-based Alzheimer's disease registry and state-wide corrections data to estimate the prevalence of individuals with dementia in the prison system. This linkage presents an opportunity to fill in significant gaps and contribute to the body of literature on dementia among people in prison in the USA.

Improving Medical-Legal Advance Care Planning.

The importance of advance care planning (ACP) has been increasingly recognized by health systems. However, 46%-76% of patients report engaging in ACP with lawyers, whereas only a minority report doing so with physicians. In the U.S., ACP with lawyers focuses on advance directive documents, naturally occurs outside of health care contexts, and is often uninformed by the clinical context, such as one's prognosis and clinical trajectory. These forms are regularly stored at home or at a lawyer's office and not available at the bedside when needed in a medical crisis. Yet, in contrast to clinicians, lawyers hold sophisticated knowledge about their states' advance directive law. Lawyers may also understand clients' socioeconomic context and plans more broadly, which are known to be critical for contextualizing and personalizing patient care but are often not well captured in health care. Aligning medical and legal approaches to ACP is important to ensuring the quality and value of those efforts. As an important first step toward this goal, we convened an interprofessional panel of medical and legal experts to elucidate the state of medical-legal ACP and begin to identify strategies to improve and align practices within and across professions. This article describes the historical disconnects between the medical and legal practice of ACP, recommendations and products of the interprofessional panel, and recommendations for future medical-legal collaboration.

Evaluation of the capacity to appoint a healthcare proxy.

The appointment of a healthcare proxy is the most common way through which patients appoint a surrogate decision maker in anticipation of a future time in which they may lack the ability to make medical decisions themselves. In some situations, when a patient has not previously appointed a surrogate decision maker through an advance directive, the healthcare team may ask whether the patient, although lacking the capacity to make a healthcare decision, might still have the capacity to appoint a healthcare proxy. In this article the authors summarize the existing, albeit limited, legal and empirical basis for this capacity and propose a model for assessing capacity to appoint a healthcare proxy that incorporates clinical factors in the context of the risks and benefits specific to surrogate appointment under the law. In particular, it is important to weigh patients' understanding and choice within the context of the risks and benefits of the medical and interpersonal factors. Questions to guide capacity assessment are provided for clinical use and refinement through future research.

Lost in translation: the unintended consequences of advance directive law on clinical care.

BACKGROUND: Advance directive law may compromise the clinical effectiveness of advance directives. PURPOSE: To identify unintended legal consequences of advance directive law that may prevent patients from communicating end-of-life preferences. DATA SOURCES: Advance directive legal statutes for all 50 U.S. states and the District of Columbia and English-language searches of LexisNexis, Westlaw, and MEDLINE from 1966 to August 2010. STUDY SELECTION: Two independent reviewers selected 51 advance directive statutes and 20 articles. Three independent legal reviewers selected 105 legal proceedings. DATA EXTRACTION: Two reviewers independently assessed data sources and used critical content analysis to determine legal barriers to the clinical effectiveness of advance directives. Disagreements were resolved by consensus. DATA SYNTHESIS: Legal and content-related barriers included poor readability (that is, laws in all states were written above a 12th-grade reading level), health care agent or surrogate restrictions (for example, 40 states did not include same-sex or domestic partners as default surrogates), and execution requirements needed to make forms legally valid (for example, 35 states did not allow oral advance directives, and 48 states required witness signatures, a notary public, or both). Vulnerable populations most likely to be affected by these barriers included patients with limited literacy, limited English proficiency, or both who cannot read or execute advance directives; same-sex or domestic partners who may be without legally valid and trusted surrogates; and unbefriended, institutionalized, or homeless patients who may be without witnesses and suitable surrogates. LIMITATION: Only appellate-level legal cases were available, which may have excluded relevant cases. CONCLUSION: Unintended negative consequences of advance directive legal restrictions may prevent all patients, and particularly vulnerable patients, from making and communicating their end-of-life wishes and having them honored. These restrictions have rendered advance directives less clinically useful. Recommendations include improving readability, allowing oral advance directives, and eliminating witness or notary requirements. PRIMARY FUNDING SOURCE: U.S. Department of Veterans Affairs and the Pfizer Foundation.

The evolution of health care advance planning law and policy.

CONTEXT: The legal tools of health care advance planning have substantially changed since their emergence in the mid-1970s. Thirty years of policy development, primarily at the state legislative level addressing surrogate decision making and advance directives, have resulted in a disjointed policy landscape, yet with important points of convergence evolving over time. An understanding of the evolution of advance care planning policy has important implications for policy at both the state and federal levels. METHODS: This article is a longitudinal statutory and literature review of health care advance planning from its origins to the present. FINDINGS: While considerable variability across the states still remains, changes in law and policy over time suggest a gradual paradigm shift from what is described as a "legal transactional approach" to a "communications approach," the most recent extension of which is the emergence of Physician Orders for Life-Sustaining Treatment, or POLST. The communications approach helps translate patients' goals into visible and portable medical orders. CONCLUSIONS: States are likely to continue gradually moving away from a legal transactional mode of advance planning toward a communications model, albeit with challenges to authentic and reliable communication that accurately translates patients' wishes into the care they receive. In the meantime, the states and their health care institutions will continue to serve as the primary laboratory for advance care planning policy and practice.

The POLST (Physician Orders for Life-Sustaining Treatment) paradigm to improve end-of-life care: potential state legal barriers to implementation.

The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm is designed to improve end-of-life care by converting patients' treatment preferences into medical orders that are transferable throughout the health care system. It was initially developed in Oregon, but is now implemented in multiple states with many others considering its use. An observational study was conducted in order to identify potential legal barriers to the implementation of a POLST Paradigm. Information was obtained from experts at state emergency medical services and long-term care organizations/agencies in combination with a review of relevant state law.