Consent Issues in the Management of Acute Ischemic Stroke

This position statement briefly reviews the principle of informed consent, the elements of decisional capacity, and how acute stroke may affect this capacity. It further reviews the role of surrogate decision-making, including advance directives, next of kin, physician orders for life-sustaining treatment, and guardianship. In some cases of acute stroke in which the patient lacks decisional capacity and no advance directives or surrogates are available, consent to treatment may be presumed. The document describes the rationale for this position and various considerations regarding its application to IV thrombolysis, neuroendovascular intervention, decompressive craniectomy, and pediatric stroke. The document also reviews consent issues in acute stroke research.

Age of Majority in Special Education and the Compliance-Driven Denial of Student Dignity and Autonomy

Ethical imperatives, the importance of self-determination, and evidence-based practices in transition direct special education professionals to ensure students with disabilities receive support that prepares them to exercise their rights as they approach adulthood. The Individuals with Disabilities Education Act (IDEA) includes mandates that address the process of transferring educational decision-making authority to students as they approach the age of majority. There is evidence, however, that indicates there are challenges with implementing such mandates as the use of surrogate decision-making mechanisms, such as guardianship, continue to be favored over less restrictive alternatives. This chapter outlines information for professionals seeking to support students as they approach the age of majority and encourages the use of strengths-based approaches, rather than approaches that center student deficits and IDEA compliance. This chapter emphasizes the importance of utilizing less restrictive alternatives to guardianship that promote student autonomy and self-determination.

We Should Widen Access to Physician-Assisted Death

Typical philosophical discussions of physician-assisted death (“pad”) have focused on whether the practice can be permissible. We address a different question: assuming that pad can be morally permissible, how far does that permission extend? We will argue that granting requests for pad may be permissible even when the pad recipient can no longer speak for themselves. In particular, we argue against the ‘competency requirement’ that constrains pad-eligibility to presently-competent patients in most countries that have legalized pad. We think pad on terminally ill, incapacitated patients can be morally permissible in cases where advance directives or suitable surrogate decision-makers are available, and should be legally permissible in such cases as well. We argue that this view should be accepted on pain of inconsistency: by allowing surrogate decision-makers to request withdrawal of life-sustaining care on behalf of patients and by allowing patients to request pad, we rule out any plausible justification for imposing a competency requirement on pad.

Feasibility and Acceptability of an mHealth ACP Tool in Primary Care

With only 7% of Medicare beneficiaries having completed Advance Care Planning with their physicians, engagement in Advance Care Planning in the clinical setting has been historically low. This study investigated the feasibility of introducing the Koda Health Advance Care Planning software platform in the primary care setting, and whether patients would engage in advance care planning through this medium. The Koda platform is a video-driven, web application that guides patients through advance care planning concepts, including values and quality of life exploration, surrogate decision maker selection, life-support treatments, and advance directive completion. The study was completed over a six-month period in two primary care clinics in the Houston, Texas area. Inclusion criteria were age 55 or older, English-speaking, and capacity for medical decision making. 339 patients met eligibility criteria and had a median age of 73 (range 59-89). All participants were offered the platform, and 262 (77%) created an account and began planning for their care. Of the patients that created an account, 87% completed all ACP steps on the platform and 72% identified a surrogate decision maker. The median time spent on the platform was 18 minutes. The Koda platform appears to be a useful tool for patients and providers to improve engagement in advance care planning and improve surrogate decision maker identification. Further research is needed to understand whether the Koda platform aids in providing goal-concordant care.

I Mind My Own Business and Expect Others to Do the Same: Conversations About Declining Financial Capacity

Introduction One of the smartest ways to prepare for declines in financial decision making capacity is to appoint an agent under power of attorney for finances and to share important financial information and preferences with trusted family or friends. Yet only 12% of older Americans with children think that they’ll need help with their finances as they age, and more than half are uncomfortable talking about their finances with children. Method: We conducted four in-depth interviews with older adults and four focus groups with Black, Latino, low income, and low-middle income adults aged 65 and older. An average of 9 participants were in each 2-hour focus group. Results Barriers included lack of awareness, denial of future changes in capacity, lack of trustworthy surrogate decision-makers, shame about one’s financial situation, desire for privacy, fear of being a burden, and resistance to overtures by children. Barriers differed by ethnicity and socioeconomic status, with lower income older adults having less knowledge of advance planning and Powers of Attorney. Implications: Significant education is needed around Powers of Attorney and how to begin the advance planning process. Study findings informed the Thinking Ahead Roadmap, a guide to facilitate planning and communication around future money management. The Roadmap uses an empowerment framework to motivate individuals to appoint trusted financial advocates and prepare them for a smooth transition in money management, thereby reducing risk of exploitation, costly mistakes, and family conflict.

Dementia Caregiver Surrogate Decision Making Self-Efficacy:Distress, and Quality of Life

We assessed the relationship between caregiver self-efficacy and caregivers’ ratings of care recipient’s health-related quality of life, the severity of neuropsychiatric symptoms, and associated caregiver distress for persons with Alzheimer’s dementia (AD). Methods: The 31-item DEMQOL-Proxy, Neuropsychiatric Inventory (NPI-Q), and the Self-Efficacy for Surrogate Decision-Making scale (SDM-SES) were collected from 26 family caregivers of people with AD expressing care resistant behaviors. We used Spearman correlations to assess relationships between SDM-SES, NPI-Q severity, and NPI-distress and DEMQOL-proxy. Among enrolled caregivers, 14 (54%) were women; mean age was 64.5 years, and 24 (92%) were college-educated. Their care recipients were 61% women, 77 % white, with a mean age of 76 years, and mostly college-educated (88%). Mean scores were DEMQOL-Proxy 91.27 (+/- 14.16), SDM-SES 16.38 (+/- 2.74), NPI-Q Severity score 14.23 (+/- 6.04), and NPI-distress 17.42 (+/-6.90). There were moderate correlations between DEMQOL-Proxy and SDM-SES (r=0.54), NPI severity (r= -0.42) and NPI-distress (r= -0.49). Secondary analysis showed a moderate correlation between SDM-SES and NPI-distress (r= -0.40). We identified associations between caregiver self-efficacy, quality of life, and caregiver distress. A higher baseline SDM-SES was associated with greater health-related quality of life for the care recipient. Lower self-efficacy scores were related to more caregiver distress related to neuropsychiatric symptoms. Higher NPI severity and caregiver distress were associated with lower quality of life for the care recipient. Interventions targeting self-efficacy may promote improved QOL and decrease caregiver distress in AD dyads.