Power, ethics and normative logic related to voluntary remote monitoring used to provide independent living

Abstract

Purpose: The social and ethical considerations of emerging remote monitoring practices with older adults are seldom discussed in the empirical literature 1-3. Remote monitoring (RM) technology is commonly described as a tool used to enhance independence, yet older adults and caregivers have also expressed concerns that RM undermines independence, self-determination and choice 4. Focus group and pilot study participants express fear that RM will reduce privacy, act as 'big brother', or undermine the ability of the elderly to keep information about themselves private for their own personal reasons 4,5. The unique contributions of this study are four-fold: it explains the ethical implications of elder care practices related to independent living; it examines discontinuation; it is based on a non-pilot real-world situation with six years of organizational use; and its sample a population that includes ethnically diverse residents of subsidized senior housing. Method: Forty-six in-depth interviews were conducted in English and Korean with current resident users, former users, social workers, and family members serving as emergency contacts for residents of six low-income independent living residence buildings in a USA city. Participants were ethnically diverse; more than half were born in one of ten different countries. The majority of resident participants had home aide services and all had multiple chronic conditions. Results & Discussion: Three interrelated ethical issues will be presented. The first is the issue of elder self-determination. Techniques include engaging family and peers to encourage adoption of RM, "revisiting" the option multiple times if a resident had initially declined RM, and presenting adoption as the right thing to do through moral discourse related to self-care. The second issue is the potential threat to autonomy and control over one's life that is embedded in the design of the passive monitoring systems. The expectation of a regularity of routine in one's daily life, coupled with no other viable options for the older adult to control their own lives, can present a problem for some users and cause them to discontinue use of RM. Third, examples will be presented of how privacy and incidental findings are perceived and handled in practice. The ways in which older adults, family members and social workers negotiate needs, concerns, caregiving, responsibility and prevention techniques are reflexive, relational practices. They have ethical aspects and implications. Findings reveal that passive monitoring systems can become coercive if the rights of the elderly to refuse or discontinue use are not respected. The interaction of power dynamics in the decision making process with potential threats to autonomy and privacy will be discussed.