The Effect of Medical Technology on a Concept of Home
By David M. Sine, DrBE, CSP, ARM, CPHRM
Homecare—the provision of personal, often sophisticated, medical care in the home—has been promoted as an attractive alternative to a lengthy hospitalization for patients. Homecare is further advanced as providing patients greater independence and more control over their care and as financially preferable to in-patient hospitalization. Greater involvement of families in care management and support of the patient when cared for in the home may have positive emotional effects on both the patient and the family caregiver(s). Descriptions of the benefits of homecare are typical of the following description by Brenner, et al:
Home therapy allows for the integrity of the family to remain intact and provides the option for greater participation by the patient and caregiver in the development and implementation of the treatment plan. Most important, (homecare) technology has led to the evolution of home therapy as a high-quality cost effective approach to care in a troubled health care delivery system (Shelton & Bender, 1994).
On the other hand, treatment and care that is technologically complex introduces into the home environment medical equipment and devices that negatively intrude on the spatial and conceptual boundaries of the home as well as the social balance and power relationships of family members. Although claims regarding the benefits of homecare are compelling, especially those arguments that promise greater patient autonomy and patient-centered care, current research strongly suggests that families with technology-dependent family members in the home confront physical, mental, social, and financial stresses (Zwijsen, Niemeijer, & Hertogh, 2011). Thus, home-based care should not necessarily be presumed to be the preferred care environment when compared to the hospital setting. Assessments of the suitability of homecare must go beyond disease management and consider, perhaps in a communitarian manner inclusive of stakeholders in addition to the patient, the totality of the patient’s environment of care, including family and social structures.
A medical technology-dependent person is defined by the United States Congress’ Office of Technology Assessment (OTA) as someone who uses “a medical device to compensate for the loss of a vital bodily function and substantial and ongoing nursing care to avert death or further disability” (Office of Technology Assessment, 1987) and can be used to refer to patients reliant on “high tech” mechanical ventilators or relatively “low-tech” dependent patients such as those who have a colostomy (Office of Technology Assessment, 1987; Studdert, Mello, Gawande, Brennan, & Wang, 2007). Such high-tech homecare includes feeding pumps, suction machines, dialysis machines, and ventilators as well as intravenous access for hydration or IV antibiotic therapy, and the delivery of parenteral nutrition. No matter the complexity of the technology involved, care in the home setting is often provided by family members (Wang & Barnard, 2004). This discussion of the effect of medical technology on a concept of home will predominantly focus on delivery of care in the home that requires a patient-machine interface with a non-implanted high-tech medical device and care of the patient provided primarily by family members.
The impact on the home milieu by medical equipment can be dramatic as the home is transformed into an environment associated with a hospital intensive care unit. A home thus transformed loses its culturally relative association with comfort, security, and privacy as daily life becomes routinized by procedures relating to the technology dependence of the patient. Little substantive consideration has been given to what impact the intrusion of homecare technology has on the logic of the home concept or what effect disruption in that logic may have on the patient, the patient’s family, or patient-centered care (Sine & Sharpe, 2011).
The logic of home or of any space is disrupted when an expectation for the function of the space (such as a bedroom) is disrupted. To find a gasoline pump in a wedding chapel disrupts the expectation for the wedding chapel as well as the typically anticipated location for gas pumps (filling stations). Similarly, to find a motorcycle parked in a living room creates a contradiction for both the logic of the living room as well as the garage in which we would have expected to find the motorcycle. Accordingly, the principle aim of this article is two-fold: to explore the effects that technologically complex medical care has on a culturally framed and anticipated concept of home and the effects changes in the concept of home have on those who co-exist in the home space, including women as the predominant providers of care.
From Hospital to Home and Back Again
Hospitals are iconic buildings. Large and imposing, they are full of the bustle and drama of life and death. Yet, more often than not, they are all but devoid of the warmth and the human scale necessary to make buildings places of comfort and security. Hospitals are not, despite their critical functions at the beginnings and endings of life, a place in which most people care to spend time.
Expedience, cleanliness, standardization, fiscal restriction, and the efficient execution of specific functions require the aesthetics of hospitals to differ dramatically from those of the home. The purpose-built environments associated with healthcare are seldom decorative, are generally not “culturally relevant,” and, unlike the personalized spaces of the home, are constructed from materials that are durable and easy to clean and maintain (Angus, Kontos, Duck, McKeever, & Poland, 2005; Brandt, 1994).
Current interest in making hospitals less institutional, more home-like, and a healing environment have caused the concept of home to be put forward as the ideal model for non-acute medical inpatient care. The leitmotif of “home-like setting”— which when idealized in the literature often mimics a middle-class family and living conditions—denies an important aspect of patient-centered inpatient care, namely that home will have a different meaning for different persons and different cultures. The provision of medical care in the home takes the “home-like” design model to its logical conclusion and resolves the problem of identifying a culturally relevant interpretation of home as a care setting.
Home is usually thought to be the place a person feels most “at home,” surrounded by familiar faces, furniture, sounds, smells, tastes, and the comforting rituals of everyday life. There exists a close relationship between personal identity and the appearance, location, and unique merits of one’s home (Mack, 1991). Many of the sensory dimensions of a home space hold an intense sentimental and personal significance that is deeply inscribed with biological, cultural, and class-related distinctions (Angus et al., 2005). The fragility of these personal elements of the concept of home is revealed when there is an unwanted or unexpected intrusion such as a burglary. Even a well-intended intrusion, such as homecare that has at its core the ethical principle of beneficence, can violate the feelings of security and safety typically associated with one’s home.
When a technology-dependent family member is brought home from the hospital for care, the introduction of medical equipment into the home space blurs the boundary between the hospital treatment setting and the home. The intrusion of unfamiliar pumps, tubes, medication refrigerators, and shower chairs alter the home’s intimate meanings as a place of security, privacy, and comfort. Brown and others have stressed the problems of maintaining normalcy in the home when it is filled with unfamiliar supplies and equipment that renders it a contested space. They underline the difficulty of ensuring that the home environment does not become “encoded” as a place of medicine as it is “transformed by the buzz, smell, and complexity” of medical equipment (Schachter & Holland, 1995).
Costs and Quality: No Real Bottom Line
Studies that have compared the quality of care in the home vs. the hospital setting find few differences in clinical outcomes (Richards, Coast, Gunnell, & Peters, 1998; Shepperd et al., 1998). However, many of the quality studies only compare clinical outcomes in the two environments of care (home and hospital) when the care was delivered and the technology managed by healthcare professionals, not family members. Most of the medical technology imported into the home was originally designed for use by skilled caregivers with advanced abilities. Successful use of complex medical technology by non-medical professionals in the home involves certain prerequisites related directly to the use of technology. Obviously, the patient should be in a stable clinical condition. In addition, the patient should have a supportive and involved family member or surrogate as caregiver, and both the patient and the other involved individuals must be able to learn and perform the tasks necessary to monitor and use the technology properly in the home environment (Kohrman, 1995). Even the simplest technologies can produce great difficulties in management and compliance for patients and family members. Studies have consistently shown that 40% to 60% of patients do not grasp the instructions for the use of metered dose inhalers (a relatively simple technology) such as failing to inhale when pushing the top of the inhaler or holding the inhaler against the chest instead of in the mouth (Timmermans & Berg, 2003).
Those who rationalize a discharge from hospital to a homecare environment as a preference for improved care quality often also cite strong arguments that there is a financial benefit when patients choose to receive high-tech care at home. The Office of Technology Assessment (OTA) asserts that “the care of technology-dependent patients at home is likely to be less costly to society and the public or private insurers when it is provided at home” (Office of Technology Assessment, 1987). Although homecare may be less expensive than hospital-based care in absolute terms to the providers and insurers, the out-of-pocket cost to the patient may be more if the same service is provided in the home depending on insurance coverage. For example, Medicare will currently cover only the administration of a limited number of intravenous antibiotics in the home (National Home Infusion Association, n.d.). In addition, a close examination of the cost valuations cited by OTA reveals a bias towards hospital-incurred expenses with little or no consideration is given to the social and financial situations of families (Wang & Barnard, 2004).
However, even if the absolute costs of care in both settings are the same, net family income is significantly lower in families providing care to a technology-dependent family member if one working member of a family quits a job in order to assume the role of caregiver. In one study of families, a total of 32.9% stated that they had quit a job, and 46% reported that they were working fewer hours in order to care for a medical technology-dependent child in the home (Thyen, Kuhlthau, & Perrin, 1999).
Setting aside any further discussion of the quality or cost of care, the most obvious benefit of high-tech homecare for the patient remains being able to maximize time at home and to have family involved in the provision of care (Pfister, 1995). For many, home remains the place where they would prefer to be when ill (Schachter & Holland, 1995).
Families as Caregivers in the Home
In addition to the physical and aesthetic issues, introducing medical technology into a home may have social and ethical consequences on the primacy of patient welfare as the home space is transformed into a place that in many ways resembles a miniature intensive care unit; a space which is most often associated with efficiency, impersonal relations, illness, infirmity, and death.
The physical structures of most homes and the rooms within them are intended to create boundaries around the most intimate spaces to create privacy. These arrangements become problematic and subtly altered when care for the technology-dependent patient is required. Even the presence of a low-tech device such as a commode chair suggests to the observer that bodily activities occur in spaces where such activities are usually out of place. The chair becomes a symbol that indicates that the logic normally associated with privacy no longer apply to this habitat and to an occupant who is now incapacitated by illness (Angus, et al., 2005). The medical equipment is more than a symbol or artifact of care; intended to assist in the care of the patient, it becomes a source of stress for the caregiver. Interviews with mothers who cared for ventilator-dependent children at home revealed that even seeing medical equipment in the home was, for them, a source of chronic sorrow and pain. In addition, the mothers explained that the presence of medical technology in the home was a constant reminder of the reality of the differences between their child and other children who were not technology dependent (Wilson, Morse, & Penrod, 1998).
The shift in the home from a place of security to an environment dominated by medical equipment also affects family members who are not directly involved in care and the fragile dynamic of family relationships. For example, if a young patient’s siblings are present, negative behavioral changes such as jealousy, resentment, and rivalry may occur. In addition, marital problems are not uncommon. Marital discord relating to issues such as unevenly divided home duties, physical and emotional stress, loss of privacy, and financial burden can result in deteriorating marital relationships, family dysfunction, and exacerbation of depression (Patterson, Jernell, Leonard, & Titus, 1994).
Research suggests that caregiver stress can be related to financial problems and overall levels of family responsibility such as situations where parents work outside the home or where there are other children. The literature documents a wide variety of stress-coupled emotions experienced by caregiver parents such as anxiety, anger, guilt, and frustration (Patterson, et al., 1994). A number of studies have found evidence of mental health problems among caregivers, such as depression, which in some cases warranted psychiatric intervention (Kirk, 1998). Family stress levels can also be aggravated if families are socially isolated by providing care. Due to the burden of care and inability to find outside assistance for providing care or monitoring the complex medical equipment, family activities can be severely restricted. Many studies report difficulties in gaining access to short-term respite care, which may lead to caregivers becoming virtually house bound (Wang & Barnard, 2004). Quint et al. found that parents who had been caring for a technology-dependent child had lower coping skills and were burned out and exhausted after two years (Quint, Chesterman, Crain, Winkleby, & Boyce, 1990).
Although gender, class, and race are incorporated within everyday activities of the home, often at an assumptive level, the response of families to the changed experience of home are not consistent across ethnic and cultural lines (Smith, 1999). Studies have found that ethnicity and culture (with ethnicity defined as a sense of shared social heritage and culture defined as a group’s way of life) can influence the response of caregivers to the stresses produced by changes in the logic of the home due to homecare (Winkler, Ross, Piamjariyakul, Gajewski, & Smith, 2006). There exists a small but growing empirical literature that compares how different cultural groups experience the strain of caring for their functionally dependent family members (Kuo, Cohen, Agrawal, Berry, & Casey, 2011; Winkler, et al., 2006). In an examination of the differential impact of caregiving strain between blacks and whites, a sample in an urban geriatric assessment center found blacks were 5.8 times more likely to institutionalize a cognitively impaired family member (Morycz, Mallory, Bozich, & Martz, 1987). While further research in this area is needed, the study’s conclusions were that black caregivers were more burdened by the provision of assistance related to physical activities of daily life (ADLs: toileting, bathing, dressing, eating) that are most affected by the physical environment (i.e. the home) in which care is rendered while whites were more burdened by the provision of instrumental activities of daily living (IADLS: shopping, money management, taking medication, and making meals)(Morycz et al., 1987).
A Disproportional Burden on Women
The discussion of the impact that changes in the logic of home has on families should also include gender as a central organizing principle in the home space. Women of all generations still carry the major burden of care for both acute and chronic conditions of spouses, children, and relatives (Thyen et al., 1999). The traditional view, of course, is that women in all cultures are defined by their capacity and instinct to care and because it was thought that women want to care, that it is their nature to care, any woman who resisted the caregiving role was thought to be unnatural (Gilligan, 1982; Tannen, 1990). This belief persists, and women are routinely asked to take responsibilities from which men are excused (Noddings, 1995). From a feminist perspective, the assumptions that caregiving is the natural domain of women and that the closest female relation has the duty to provide care are asymmetrical and unjust. Although more men participate as caregivers in the home than in previous generations, homecare places a disproportionate burden on women who, as caregivers, often forgo employment opportunities (Schachter & Holland, 1995).
The burden on women by the conversion of the home place into a place of care for the technology-dependent can be tangentially quantified through a study of the effect on family incomes. Family income was significantly lower in families providing care to a technology-dependent family member. Often, income is reduced because one working member of a family will quit a job in order to care for a technology-dependent family member. In one study of two-parent families with technology-dependent children cared for in the home, a total of 32.9% stated that the woman had quit a job in order to care for a child and 46% reported that they were working fewer hours in order to care for a medical technology-dependent child. This financial impact of caring for a technology-dependent child was especially problematic for single mothers. Single mothers acting as a primary caregiver for a technology-dependent child were 15 times more likely to quit a job compared with mothers living in two parent families (Thyen et al., 1999).
Special Issues for the Technology-Dependent Child
When the homecare patient is a technology-dependent child, parents experience extra physical and emotional burdens (Carnevale, Alexander, Davis, Rennick, & Troini, 2006; Kuo, et al., 2011). Evidence suggests that even the daily routines and continual responsibilities associated with the medical care of a technology-dependent child can result in physical and emotional overburden on the home caregiver (Thomlinson, 2002). Sleep deprivation, insomnia, high levels of anxiety and depression are prominent in parents of technology-dependent children cared for at home. Reports reveal a number of unique stress factors encountered by parents including chronic anxiety about children’s unpredictable medical states, high levels of vigilance (especially at night), and constant beeping and buzzing from alarms (Wang & Barnard, 2004). Jennings (1990) found that stay-at-home mothers caring for children with a tracheostomy reported that they found the experience both exhausting and overwhelming. Parents expressed that the fear of the child dying while in their care and the fear of not hearing the child if he/she was in trouble was ever present. Finding even a short-term respite from these burdens can be problematic because finding baby-sitters for an evening out or other leisure activities is nearly impossible because of the child’s specialized needs (Teague, Flemming, & Castel, 1993). Those parents who do manage to obtain short-term care are reported to be concerned over its quality and safety, with many parents noting that services are designed for those with developmental rather than complex physical or medical care needs (Diehl, Moffitt, & Wade, 1991).
The advantages of providing care to the technology-dependent patient in the home are well documented. The inherent risks and impersonal efficiency of hospital-based care can make even a woefully inadequate home seem warm and inviting (Ruddick, 1995). Indeed, care in the home lessens many hospital-based concerns for patient rights and privacy that are associated with the often anonymous, diffuse, and harried care in larger hospitals and academic medical centers. For the family, the advantages of homecare are the ability to have unfettered daily contact and closeness without the intrusion of others. Within the medical ethics frame, there is increased autonomy for patients and their families who are placed in control of decisions about care at the point of care.
On the other hand, the privacy provided by the private home may actually decrease mobility and access for the patient. Private homes, unlike hospitals, are not designed to be “disability friendly” or to meet architectural requirements for access to toilets and lavatories, or to be barrier free. A technology-dependent patient, who, with the assistance of an IV pole or walker can navigate their room or even the length of an entire unit in a hospital, may find themselves trapped in the second floor bedroom of their own home and tethered to an immobile medical device. The caregivers of such a patient may find themselves similarly tethered to the home and experience a similar loss of freedom due to their new role(s).
Dulworth and Pyenson (2004) found a strong correlation between average length of stay (ALOS) and hospital-acquired infections (HAIs) that could possibly make use of homecare appear to be an attractive alternative to a lengthy hospitalization. The conventional thinking is that homecare, which has as a goal improved quality of care measured through reduced risks of hospital-acquired infection and iatrogenic injury, is both desirable and ethical. However, that thinking does not fully consider, in a communitarian manner, the full consequence that the inclusion of medical technology has on the patient and family in the home setting. This paper has elucidated that the too frequent and too early use of homecare for a medical technology-dependent patient potentially has adverse effects on the social structure and family economics of the home.
Medical technology and homecare disrupt the intimate relationship between self and home space and the balance of familiar social roles and relationships within that space. The loss of flow between spaces and everyday activity disrupts the relationship between caregiver, care recipient, and the culturally relevant meanings of home (Angus, et al., 2005). Thus, the discharge of the patient to homecare, even with its reduced frequency of iatrogenic injury and lessened risk of hospital-acquired infection, should be tempered with a more realistic look at the patient’s home environment and how that will be altered, perhaps negatively, by the introduction of medical technology into the private and intimate logic of the home space in a manner that in sum detracts from the primacy of patient welfare.
Because economic and social burdens are shifted from hospital to family, home-based care should not necessarily be presumed to be the preferred care environment when compared to the hospital setting. If homecare includes the introduction of medical technology into the home, the resultant repurposing of the home space reinforces dependence and social stigma, increases stressors, and creates architectural and social barriers. Therefore, to be both ethical and inclusive of a patient’s preferences and values, assessments of the suitability of a technology-dependent patient’s discharge to homecare must not be limited to the medical condition of the patient, the etiology of the disease, or the ability of family to provide care. Assessments must also ask what the people involved in the plan of care mean to each other, what their home and each of its rooms mean to them, and what effect the intrusion of medical technology into the home might have on those meanings before a technology dependent patient is discharged from hospital to homecare.
David Sine has over 30 years of healthcare risk and safety experience in both private and public sector health systems. He currently serves as an advisor on risk management to the National Association of Psychiatric Health Systems and as chief risk officer for the Veterans Health Administration Office of Quality, Safety and Value. Dr. Sine holds a degree in design from the School of the
Art institute of Chicago, a masters in health policy and a doctorate in biomedical ethics from Loyola University, Chicago and has research interests that intersect risk management, ethics, and patient safety. He may be contacted at firstname.lastname@example.org.
The opinions in this article are those of the author and are not intended to represent the position of the Department of Veterans Affairs or the U.S. government.
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