Family Caregiving, Home Medical Devices, and the Sociotechnical System: Bringing the Biomedical Sciences into the Bioethics Discourse

Informal caregiving by family members has been a substantial, cost-effective resource for the medical system. More recently, complex devices have made it possible to sustain patient's lives at home in more acute situations for longer periods of time. The arguments supporting the use of home care devices have been predicated on improving patients' quality of life since patients want to live out their life in their home. Ethically, this has been advocated as a means by which medicine can support patient-autonomy. This assumes the patient had a choice in using these devices and, more broadly, that the family caregiver had any choice. Autonomy fails to distinguish that a patient's autonomous choice is based on the expectation of use and that family will provide care. I will argue that neither the care recipient nor caregiver has autonomy and that the relationship they share is far more important. This usual deference to patient-autonomy overlooks the caregiver, the true user, on whom the patient and the system is reliant. Pushing this cultural objective of sustaining autonomy are the home care technologies themselves through the force of the technological imperative. While we often conceive of technologies as neutral objects, I argue they are cultural artifacts reflecting social values and practices. These values are imbued in these technologies' development and design by biomedical scientists and engineers who create them. These same people, though, are separated from the values and needs of family caregivers, challenging the goals of home care. I will argue they should not be separated since they are not neutral but rather moral actors within the larger context of the medical sociotechnical system.