“Nobody Tells You Anything”: Ethics of Privacy in Assisted Living Open Access

Cooke, Emma (Spring 2020)

Permanent URL: https://etd.library.emory.edu/concern/etds/nc580n73g?locale=en


Assisted living (AL) was developed as a “homelike” alternative to nursing care for older adults; however, as the AL population has aged, its role as a home and community is balanced with its role as a healthcare delivery site. Enforcement of the Health Information Privacy and Accountability Act (HIPAA) illustrates this dichotomy. AL, as a patient care site, must abide by regulations restricting health information sharing among residents and staff; however, in the setting of a community with longstanding peer relationships, many residents find these regulations frustrating. 

HIPAA was established to protect patient privacy, but is rooted in a Western conception of autonomy that may not fully recognize individual embeddedness in a larger community. Alternative conceptions of autonomy such as relational autonomy and ethics of care contextualize decision-making within the context of a community network, and point towards ways to reconcile the two equally important values of personal privacy and social connectedness.

This study analyzed qualitative data collected over a two-year period at Parkside, an AL community in Atlanta, to address the question: what are the health information sharing practices in AL that help or hinder residents’ maintenance of self?, with maintenance of self defined as the process of continuously upholding and refining a sense of individual identity and meaning throughout life. We identified four health information sharing practices: conversing about health, obtaining health information through observations in the environment, using health information, and maintaining privacy. We then identified four overarching themes within these practices: (1) Providing information about shared life stage and health circumstances builds community; (2) Avoiding health information disclosure or providing incomplete information leads to frustration and further questions; (3) Inserting medical information into public space medicalizes the social environment; and (4) Negotiating privacy boundaries in health information requires compromise between residents and staff.

These themes illustrate HIPAA’s limitations in the AL setting; accordingly, we recommend developing a health information advance directive, allowing residents to designate the amount of health information they would like to share in the event of hospitalization. This policy would allow for resident choice and better recognize the unique needs of AL residents.

Table of Contents

Chapter 1: Privacy, Social Relationships, and HIPAA in Assisted Living                                 1

Chapter 2: Ethical ramifications of sharing health information in AL                                      14

Chapter 3: An Examination of One Assisted Living Community’s Health Information

Sharing Practices                                                                                                                      30

Chapter 4: Toward A New Approach in Health Information Sharing Practices                       54

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