Surrogate Decision Makers and Proxy Ownership: Challenges of Privacy Management in Health Care Decision Making

Abstract

This study explored the communicative experiences of surrogates who served as decision makers for patients who were unable to convey health information and choices about treatment options. Drawing on assumptions from communication privacy management theory (Petronio, 2002), 35 surrogates were interviewed to explore how they navigated the role of guardian of patients’ private health information while the patient was hospitalized. This research determined that surrogates are not only guardians and thereby co-owners of the patients’ private health information, they actually served in a “proxy ownership” role. Surrogates described obstacles to both obtaining and sharing private health information about the patient, suggesting that their rights as legitimate co-owners of the patients’ information were not fully acknowledged by the medical teams. Surrogates also described challenges in performing the proxy ownership role when they were not fully aware of the patient's wishes. Theoretical and practical implications of these challenges are discussed.

“Let him speak:” a descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment

“…The contributions of family companions in facilitating relationship rapport, information exchange, and medical decision‐making during face‐to‐face medical visits of older adults without cognitive impairment (Wolff and Darer, ; Laidsaar‐Powell et al, ), as well as varied behaviors of these companions that may alternatively help or harm effective communication, have been identified in prior work (Clayman et al, ; Wolff and Darer, ; Wolff and Roter, ). Results from our study and others (Hunsaker et al, ; Schmidt et al, ) underscore the particularly influential roles assumed by family companions during primary care visits of older adults with cognitive impairment and significant challenges relating to older adult and family companion perceived “co‐ownership” of patient health information in conjunction with the prevailing health system orientation to patient privacy and confidentiality (Petronio et al, ; Bute et al, ). This issue is even more complex when multiple family members are involved, a glimpse of which was seen in our study when two daughters participated in the interview with their mother.…”

Ethical frameworks for surrogates’ end-of-life planning experiences

“…23,26,27,31,35,44,47 These guiding ethical frameworks included traditional ethical concepts of respecting patient autonomy, 26,35 and substituted judgment and/or best-interest standards, 31,44,47 as well as “case-based” ethical theories (e.g., narrative ethics, casuistry). 27 Ethical frameworks were typically introduced in the introduction or background with research questions framed around them and points raised about the frameworks in the discussion sections.…”

“…The husband stated that “because healthy people would also be nourished, artificial nutrition and hydration was neither artificial nor invasive. To him it was not a treatment measure at all.” 23(p334) …”

Family Communication about End-of-Life Decisions and the Enactment of the Decision-Maker Role

“…The complexity of EOL decision situations creates a number of dilemmas for family members required to make a decision for a loved one at the end of life. Family members may face challenges in obtaining the information needed to make a good decision [ 21 ] or knowing when a decision point is nearing [ 22 ]. Without adequate information from health care providers to inform the decision, families can experience resentment and emotional burden after a decision is made [ 21 , 22 ].…”

“…Family members may face challenges in obtaining the information needed to make a good decision [ 21 ] or knowing when a decision point is nearing [ 22 ]. Without adequate information from health care providers to inform the decision, families can experience resentment and emotional burden after a decision is made [ 21 , 22 ]. Family members also may be uncertain about the right decision to make [ 10 ], even when there is an ACD in place [ 4 ].…”