Abstract
In this paper, I will argue that there is a deep connection between home-based care, technology, and the self. Providing the means for persons (especially older persons) to receive care at home is not merely a kindness that respects their preference to be at home: it is an important means of extending their selfhood and respecting the unique selves that they are. Home-based technologies like telemedicine and robotic care may certainly be useful tools in providing care for persons at home, but they also have important implications for sustaining selfhood in ways that are of value to individuals and those who care for them. I will argue, by appealing to Hilde Lindemann’s notion of “holding” persons’ identities in place, that technological interventions are not only useful tools for improving and sustaining health and good care at home, but that they may also help to extend our personal identities and relational capacities in ways that are practically and ethically good. Because of these important goods, I will claim that there is a prima facie moral duty to do this “holding” work and that it is best done by family members and loved ones who are well suited to the job because of their history and relationship with the individual that needs to be “held” in place.
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Notes
The term "home" may have a variety of meanings, but for the purposes of this paper it will denote the space where an individual primarily resides that is deeply personalized and meaningful. Home is the place where one is most authentically herself, and where she feels most comfortable. By this definition, a nursing home or long term care facility could also be "home" if the space is personalized and deeply meaningful to the individual. Note, however, that what matters is whether the individual in question views her space as being "home," not how her adult children or others view it.
For the sake of simplicity, and given that the majority of elderly persons receiving care at home are women, I will use the terms "she" and "her" throughout this paper when referring to an elderly individual.
The kinds of technologies that are relevant to my discussion in this paper are home based technologies that run the gamut of assisting the individual resident with everyday tasks (remembering to take her pills, using telemedical technology to contact care providers, or automatically turning off burners if they are accidentally left on) to collecting data so caregivers can monitor the health and function of elderly patients at home (for example, by using advanced technologies like "SHIMMER" which is a body-worn sensor that tracks information about a patient's gait, stride length, or tremors to determine if there are any negative changes taking place; or the magic carpet, which can detect and map an individual's walking patterns, thus allowing physicians to detect even a small deterioration in a person's walking patterns that might not be evident to a caregiver or family member. For more on these technologies, see http://www.gizmag.com/magic-carpet-detects-falls/23979/ and http://www.shimmersensing.com/research-and-education/applications/#applications-tab).
It is especially important for older individuals to be viewed and respected as unique persons, since institution-based care takes them completely out of context. Especially in cases where an individual is experiencing some degree of cognitive decline, she may be easily seen as a body to take care of or a mouth to feed, rather than as an individual with a history, a home, and a unique set of interests (Parks 2003).
Indeed, my account of the self is not rooted in a traditional notion of autonomy which sees the individual as an independent, self-sufficient, rights-bearing entity, but rather it is rooted in a relational conception of the self in which our identities come out of, and are sustained within, a community of caring others (see Mackenzie and Stoljar 2000; Nelson and Nelson 1995; Kittay 1999; Lindemann 2009).
For a primer on telemedicine, please see the American Telemedicine Association at http://www.americantelemed.org/about-telemedicine/what-is-telemedicine#.VOez_fnF8gk. The rise in the use of telemedicine has been addressed by Frist (2014), Freudenheim (2010) and Worth (2014).
Notice that, just as families and loved ones “hold” one another of all ages in memory and identity so, too, do technologies like those mentioned above “hold” us all in place. For example, while some of the technologies I mention are particularly useful to older persons who may be experiencing some cognitive decline, they are also useful to individuals in general, helping us to locate items, remember appointments, and so on.
I do not think it is always wrong for families to decide to place their elderly family members in assisted living or nursing home institutions. In cases where the care needs of their loved one would place an extreme burden on family members (especially female family members, who are mostly expected to complete the care work), the family members also have a major stake in the decision to provide care at home. The goal is not to keep individuals in their homes at any and all costs, but to do so in a way that balances the goods that will be achieved over the negative aspects of doing so. I believe that incorporating some home-based technologies can help families to achieve these goods for their loved ones by reducing some of the care demands they might otherwise face. This issue will be discussed in more detail later in this essay.
While I do not have the space to consider this issue in detail, more work needs to be done on good and bad “holding.” Family relationships can be loving, supportive, and edifying; but they can also be hateful, abusive, and destructive. Not all family members—or families—are good “holders,” and not all individuals are in a state where they are able to be held in place. As dementia deepens, and home is no longer a meaningful space, such “holding” may be an impossible task for both families and those they care for.
I say “largely” here because, as I have repeatedly noted, even younger persons without cognitive decline use assistive technology to remember things and to extend their cognition outside of the brain. We are all “extended minds” (Clark 1997) in the sense that all human beings use technology in various ways to hold memories. For example, without my Google calendar I would not remember what I did many months or years in the past; I can open the calendar online and access activities from five years ago, which my mind is not capable of doing.
In his work, Kibbe (2014) details the importance of creating technologies that are transparent, user-friendly, and repairable so that they can do their valuable work of sustaining selves in personhood.
Of course, this moral “ought” is an ideal that some nations cannot possibly meet due to a weak economic, political, and social infrastructure.
In stating this, I do not assume that everyone feels safe, comfortable, or loved in her home space. I recognize that some homes are the sight of abuse, violence, and unspeakable harm, and that some homes are in no condition to be inhabited by families, despite the fact that families live in them. I would venture to say that all persons should have the opportunity to have a home where they do feel safe, comfortable, and loved; our job, then, is to do what we can to allow individuals to stay at home, where that is desired by the individual, or to help individuals who do not have such a place to find one.
This is not to say that men do not do the kinds of “holding” work mentioned in this essay. However, as Carol Gilligan noted over 30 years ago (Gilligan 1982), we need to ensure that men and women develop equally within themselves orientations towards both justice and care so that we can all be balanced, fully flourishing selves.
These support structures might include a variety of strategies such as funded respite care so familial caregivers can take breaks from care demands; state supported implementation of home based technologies to relieve families of the cost for their implementation; or flexible work schedules that permit caregivers to check on family members during the day. An excellent argument in favor of providing care for caregivers can be found in Eva Kittay’s work, Love’s Labor: Essays on Women, Equality, and Dependency (1999).
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Acknowledgments
I would like to thank Bryan Kibbe for inspiring the ideas on technology and identity contained in this essay and, through his own careful work, for furthering my thinking on home-based care and technology.
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The author has no conflict of interest to report in the preparation or publication of this manuscript. No other person contributed to the preparation or editing of this manuscript; the author is solely responsible for its contents. This article does not contain any studies with human participants or animals performed by the author.
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Parks, J.A. Home-Based Care, Technology, and the Maintenance of Selves. HEC Forum 27, 127–141 (2015). https://doi.org/10.1007/s10730-015-9278-4
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DOI: https://doi.org/10.1007/s10730-015-9278-4