Bringing the hospital home. Ethical and social implications of high-tech home care.

One is struck initially by the complexity of the phenomenon of high-tech home care. During the past decade a wide range of technical services has evolved to meet the needs of an equally wide spectrum of patient populations. The technologies encompass some relatively uncontroversial devices, designed to provide low-cost replacements for home health aids, such as personal emergency response systems and sensors that signal an alarm once the patient wanders beyond certain boundaries. Such innovations are usually modestly priced and offer significant benefits in terms of safety and peace of mind for both patients and families. Then there are relatively uncomplicated therapeutic measures, such as home oxygen dispensers, that provide important benefits--in this case, greater ease in breathing for a large population of elderly patients with compromised lungs--without imposing serious financial or management burdens upon patients, caregivers, or society. Finally, and most problematically, there are the paradigmatic high-tech therapeutic interventions that should be the main focus of ethical and social concern: sophisticated catheters and infusion pumps for the delivery of all manner of antibiotics, nutrition, and analgesics; home ventilator systems; and some extremely expensive but noninvasive hardware, such as the new "Flexicare" beds that relieve bed sores at a going rate of $20,000 per unit. It is crucial to note here, however, that one cannot place a given technology anywhere on a spectrum of moral and social concern simply by referring to its status as "high tech." A great deal depends upon the context of its deployment--upon the "who," the "where," the "why," and the "for how long," as well as the "what. " A wide variety of high-tech home care interventions is currently administered to a very broad spectrum of patients, including children, the elderly, cancer and AIDS patients, as well as to a large number of otherwise completely functional, working adults. Whether a given technology--for example, home ventilators--will tend to generate serious ethical and social problems depends on answers to a large number of questions. Is the patient tethered to the machine for a life of indefinite duration or only for a short time? Is the purpose of the treatment merely palliative or is it meant primarily to restore health or extend life? What is the quality of the life thus extended? Is a family member or close friend present, able, and willing to shoulder the burdens of care, and will they continue to be as their own individual and collective situations change? If so, how great are those burdens, given the level of care and the caregivers' other responsibilities? If no family member or friend is available, could care be purchased to fill this void? Is the home well-equipped and clean, or as is the case for many urban and rural poor, is it roach-infested and lacking even "low-tech" necessities such as telephone and refrigeration? And finally, what is the cost of delivering this technology in this way compared to other ways in other settings? In spite of the fact that the label "high tech" does not automatically confer the status of "ethical/social problem" on any given procedure or piece of medical equipment, it remains true that the phenomenal growth of high-tech home care in the last decade poses at least one novel problem and, like the AIDS epidemic, puts a distinctive spin on older, more familiar problems. As we shall see in later sections devoted to policy issues, still other problems, such as unabashed profiteering by manufacturers and the failure of regulators and industry to assess quality and efficacy, are neither new nor do they manifest a distinctive spin: they are as familiar and American as apple pie. If one were to ask what is really novel, from an ethical or social point of view, about high-tech home care, we would respond that it is the hypermedicalization of the home, the extension of medical dominion to the heretofore private sphere of family and friends. …