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Importance – The homeless face higher rates of morbidity and mortality than the general population, and have lower rates of end-of-life care planning. An effective and sustainable intervention, to provide living wills and durable power of attorney, is required to protect the autonomy of a vulnerable population. Objective – To determine if medical student-led 1:1 counseling is as effective as social worker-led counseling as reported in the literature, determined by rate of advanced directive completion. Design – A focus groups and educational sessions on EOL care and ADs were conducted at 2 shelters, after which participants were offered the opportunity to sign up for a 1:1 counseling session with a medical student volunteer. Rates of sign-ups and completion were recorded. Setting – 2 North Philadelphia homeless shelters, requiring either an Axis I or current substance abuse diagnosis for residence. Participants – A convenience sample of 20 homeless men were approached; 10 enrolled in the study. Interventions – Educational sessions, focus groups, and 1:1 AD completion counseling sessions Main Outcomes – Interest in and completion of an advanced directive. Results – 9 participants signed up to complete ADs after an informational session. At the conclusion of the study, 8 of them (88.8%) completed ADs. 40% of the total participants completed an AD. Conclusions – Similar rates of advanced directive completion were achieved with the student-led intervention compared to a previous intervention in the literature. Further study with a larger sample including homeless women should be conducted to provide a generalized conclusion. / Urban Bioethics

Death is an inevitable part of life, yet many Americans fail to plan for this final part of life. Only about 1/3 of our country has an advance directive (Off White Papers, 2014). This underutilization of advance directives is reflected in our health care spending. It is estimated that 30% of all Medicare spending occurs during the last six months of a patient’s life. The numbers are even lower when broken down into sub-categories. Only 24% of older Black Americans possess an advance directive versus 44% of their older White counterparts (Huang, Neuhaus, & Chiong, 2016). Some studies found that African Americans were more likely to “express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs which conflict with the goals of palliative care, and distrust the healthcare system” (Johnson, Kuchibhatla, & Tulsky, 2008). Other studies have even concluded that Black race is an independent predictor of lack of advance directive possession (Huang et al., 2016). This paper further explores the possibility that race and ethnicity may simply be proxies for cultural values that impact advance directive possession. We’ll discuss the barriers, for both Black patients and health care providers, to advance directive possession as well as investigate culturally mindful interventions to combat the barriers. / Urban Bioethics

The purpose of this study is to explore what knowledge dementia caregivers have about advance care planning (ACP), how they learn to execute formal advance directives (ADs) or have engaged in an informal ACP process, and how they understand their roles as decision makers for the patients. Factors that contribute to the completion of an ACP process such as demographic, psychosocial, and situational factors are identified. From the grounded theory data analysis, a theory emerged about how ACP is accomplished and used by caregivers. Findings reveal that caregivers understand ACP as having the power to shape the dying process for dementia patients. It is not just about executing formal written ADs but how caregivers exercise that power. Caregivers’ knowledge and beliefs are reflected in their behavior regarding ACP in both how they do the ACP process and how they use ACP. For the caregivers in this study, the process of ACP occurs along a trajectory from: years before dementia to dementia diagnosis to end stage and death. At each of these stages, actions taken by the caregivers and their motivation are identified. Three key features of the ACP process in all three stages are examined: conversations within the family and with trusted others, gaining knowledge of ACP, and keeping ACP documents. How caregivers use ACP is based on how they define their roles as decision makers for their patients by: accepting responsibility for making difficult decisions regarding treatment for the patients, using ACP as an effective tool to shape the dying process for their patients, and doing battle with health care professionals to honor patients’ wishes. This definition is shaped by the meaning caregivers give to ACP, how caregivers understand life sustaining measures, and caregivers’ knowledge of patients’ end-of-life wishes. This new theory, the Dementia Caregiver Advance Care Planning Theory, adds new knowledge as the first model specific to dementia caregivers and adds dimension and depth to the current existing ACP models by detailing an ACP process, demonstrating the impact of conversations on the process, and identifying both the most important influences and the primary relationship in the decision making process.