Ethics of Health Information Sharing and Social Relationships at End of Life in Assisted Living.

Given an observed tension between perceived privacy restrictions and meaningful social connection in assisted living (AL) and using a relational perspective, we conducted a secondary thematic analysis of health information sharing practices among residents and their care partners in one large urban AL community in metropolitan Atlanta. Data included in-depth interviews with residents (n = 26), family members (n = 20), AL staff (n = 11), and external care workers (n = 4) as well as ethnographic data from observations and informal conversations conducted with these participants and others. Findings showed that health information sharing among residents was helpful in building social relationships; barriers to this communication contributed to isolation. Inappropriate public exchange of residents' healthcare information hindered building these relationships. Negotiating privacy boundaries for health information sharing was an ongoing confusing process across the community. Based on the findings, we propose new guidelines for health information sharing and additional privacy training for residents and care partners.

An Algorithmic Approach to Patients Who Refuse Care But Lack Medical Decision-Making Capacity.

Situations in which patients lack medical decision-making (MDM) capacity raise ethical challenges, especially when the patients decline care that their surrogate decision makers and/or clinicians agree is indicated. These patients are a vulnerable population and should receive treatment that is the standard of care, in line with their the values of their authentic self, just as any other patient would. But forcing treatment on patients who refuse it, even though they lack capacity, carries medical and psychological risks to the patients and the hospital staff. It is also often impractical to force some treatments, especially in the long term. For example, independent of the ethical "should" question, how would one force hemodialysis for the rest of a patient's life, or force a surgery that requires weeks of post-operative physical therapy? In this article we present a novel algorithm that can help clinicians with ethical and practical decision making, with the goals of achieving the best outcomes for patients and reducing moral distress for their caretakers and clinicians.