Abstract
This article examines the role of context in the development and deployment of standards of medical decision-making. First, it demonstrates that bioethics, and our dominant standards of medical decision-making, developed out of a specific historical and philosophical environment that prioritized technology over the person, standardization over particularity, individuality over relationship and rationality over other forms of knowing. These forces de-contextualize the patient and encourage decision-making that conforms to the unnatural and contrived environment of the hospital. The article then explores several important differences between the home health care and acute care settings. Finally, it argues that the personalized, embedded, relational and idiosyncratic nature of the home is actually a much more accurate reflection of the context in which real people make real decisions. Thus, we should work to “re-contextualize” patients, in order that they might be better equipped to make decisions that harmonize with their real lives.
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Notes
Research shows that sometimes it is, and, surprisingly, sometimes it isn’t. In fact, there is a growing ethnographic literature demonstrating that despite the best intentions of developers, home-based medical services and technologies can actually be quite disruptive to the “intimate, co-constitutive relationship between self and home” and the care recipients’ “embodied subjectivity” (Angus et al. 2005, p. 182; Dyck et al 2005, p. 176). An article by Bowden and Bliss (2008) reveals that the use of highly medicalized hospital beds in the homes of terminal cancer patients is far from “entirely benign and beneficial” (p. 561) and often represents the beginning of an unanticipated transformation in the patient’s experience of home.
While in general the data demonstrate that remaining in one’s home while receiving healthcare has significant emotional and physical benefits (see Gilleard et al. 2007; Wiles et al. 2011; Chapin and Dobbs-Kepper 2001), this is sometimes not the case. See Jennifer Parks’ text No Place Like Home? (2003) for a discussion of how many home health care practices can be highly exploitative of both workers and patients.
Of course, Kant and Rawls have a very specific understanding of what constitutes “rationality” (very simply, rationality is that which conforms to means-ends reasoning), one that neglects other versions of practical reason. MacIntyre claims (1988) that all conceptions of rationality are relative to a certain tradition, and to identify or use a particular conception independent of its tradition, as Rawls has, only confuses the conversation.
I use the term radical individualism not necessarily to distinguish it significantly from individualism as the term is usually used (i.e., that the freedoms, goals and values of the individual are prioritized over and above those of collections of individuals or communities) but instead to emphasize that, according to this particular anthropology, this priority is fundamental and inherent.
While this section focuses on standards of general medical decision-making, the influence of modern liberalism (specifically its emphasis on individualism) in standards of pediatric decision-making has been discussed in Salter (2014).
Berger et al. critique the traditional hierarchy of standards (known wishes, substituted judgment, and best interests) saying that “many patients do not necessarily want their surrogates to follow their specific treatment preferences or to follow the standards sequentially but wish them to respond dynamically to actual clinical situations and to integrate both medical and nonmedical concerns” (p. 49) including concerns like minimizing emotional or financial burdens on family members. As an example of a situation that would likely defy the traditional hierarchy by giving preference to substituted judgment over known wishes, the authors imagine a surrogate decision maker stating that “I know that my wife wrote in her living will that under no circumstances would she want to be on a ventilator, but our son is returning from Iraq next week and I believe she would want to be kept alive to say goodbye” (p. 50).
The American Cancer Society offers this question among several others on a list of things to consider when making a treatment decision. http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-treating-considering-options.
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Salter, E.K. The Re-contextualization of the Patient: What Home Health Care Can Teach Us About Medical Decision-Making. HEC Forum 27, 143–156 (2015). https://doi.org/10.1007/s10730-015-9268-6
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DOI: https://doi.org/10.1007/s10730-015-9268-6