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The Environments of Home Health Care

THE PHYSICAL ENVIRONMENT AND HOME HEALTH CARE1

The physical environment can create demands on people’s abilities, said Jon Sanford. If environmental demands are either too strong or too weak, maladaptive behavior can result. “We want to find the zone where the demands equal our abilities.”

In its International Classification of Functioning, the World Health Organization made the environment an integral part of the domain of health. The environment helps determine what people can do—based on their body function and structure—and what they do do—their activities and participation. However, the classification does not emphasize that the environment also affects health, Sanford observed. “They talk about it, but they don’t really have it in the model.”

Environmental Modifications to Improve Activity and Health Outcomes

To make environmental modifications that improve the ability to carry out activities and tasks, assessments need to be made of the fit among a person’s abilities, the demands of activities and tasks, and the attributes of the environment. This information about abilities, activities, and attributes then needs to be analyzed and translated into appropriate interventions.

1

This section is based on the presentation by Jon Sanford, director and senior research scientist in the Center for Assistive Technology and Environmental Access at the Georgia Institute of Technology. For more information and for references to the information cited in this presentation, see Chapter 10.



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4 The Environments of Home Health Care THE PHYSICAL ENVIRONMENT AND HOME HEALTH CARE1 The physical environment can create demands on people’s abilities, said Jon Sanford. If environmental demands are either too strong or too weak, maladaptive behavior can result. “We want to find the zone where the demands equal our abilities.” In its International Classification of Functioning, the World Health Organization made the environment an integral part of the domain of health. The environment helps determine what people can do—based on their body function and structure—and what they do do—their activities and participation. However, the classification does not emphasize that the environment also affects health, Sanford observed. “They talk about it, but they don’t really have it in the model.” Environmental Modifications to Improve Activity and Health Outcomes To make environmental modifications that improve the ability to carry out activities and tasks, assessments need to be made of the fit among a person’s abilities, the demands of activities and tasks, and the attributes of the environment. This information about abilities, activities, and attributes then needs to be analyzed and translated into appropriate interventions. 1 This section is based on the presentation by Jon Sanford, director and senior research scientist in the Center for Assistive Technology and Environmental Access at the Georgia Institute of Technology. For more information and for references to the information cited in this presentation, see Chapter 10. 

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8 HUMAN FACTORS IN HOME HEALTH CARE Not all assessments are the same, said Sanford. Some look at the expected performance of an individual, and others look at actual perfor- mance. Assessments of expected performance look at the anticipated per- formance of activities based on ability and environmental attributes. They do not accurately reflect differences between what individuals can do and what they actually do. Assessments of actual performance focus on activities rather than abili- ties or attributes of the environment. These kinds of assessments then require additional assessments of the environment to determine what needs to be modified and how. For example, one assessment asks people if they are satisfied with what they are able to do in terms of dressing, bathing, feeding, and so on. If they are not satisfied, the next question is how the situation can be modified to allow them to do what they want to do. By linking assessments of abilities, activities, and attributes, designers of the physical environment can develop best-fit solutions. These solutions should be individualized, customized, and personalized, Sanford said, to fit the functional needs of the individual. Still, best-fit solutions are situational. A number of confounding factors can mediate and influence decisions about modifications. Examples of these factors include the personal tastes or preferences of individuals in the home, the social constraints of the living situation, the structure of the home, building and zoning codes, and cost. The majority of the modifications that are typically made relate to get- ting into and out of the home, safe movement within the home, and safe transfers and greater independence in self-care activities. For getting into and out of a home, ramps and lifts can obviate the need for stairs. Chair lifts and architectural modifications, such as wider doors, can facilitate movement within the home. And safe transfers and greater independence can involve modified toilets, sinks, and baths; grab bars and other devices in bathrooms and kitchens; and other modifications designed to facilitate daily activities. A wide variety of organizations and individuals support and provide these modifications, including government agencies, nongovernmental orga- nizations, private contractors, remodelers, builders, occupational therapists, home health nurses, and social service providers, some of whom are trained and certified for their jobs and others of whom are not. Overall, the system is complex and fragmented, said Sanford. “Imagine people trying to get into the system and figure it out.” Most home modifications are paid for by the recipient of care or some- one associated with the recipient. From one perspective, this makes sense, since disability can be seen as a life-cycle event comparable to having a baby or building a home office. But modifications could also be seen as part of the health care system. In some countries, the government subsidizes home modifications throughout the life span. “Whatever you need you get, and

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 THE ENVIRONMENTS OF HOME HEALTH CARE if you need it again or if your situation changes, you can get the house remodified or new modifications brought in.” In those cases in which government does pay for home modifications in the United States, many different agencies and organizations can be involved, including state agencies, private insurers, social service organizations, and volunteer organizations. “Again, it’s a patchwork, and it’s fragmented,” Sanford commented. Products and Technologies to Improve Health Management and Treatment Products and technologies can facilitate both caregiver tasks and access to caregivers. For example, a wide variety of products can aid in mobility and transfer, such as ceiling track lifts, portable lifts, wall boom lifts, and rolling lifts. However, some lifts can require major modifications to a home, which can lessen their appeal to homeowners. They can also be expensive. A regular bathtub costs a few hundred dollars, whereas a walk-in tub can cost about $3,000, plus installation. Within a bathroom, devices for transfer include tub seats, transfer benches, lifts, raised toilet seats, and grab bars. All can be very useful, although some products can create obstacles and clutter for people who do not need them. Various products and technologies can reduce safety hazards by turning off stove burners, maintaining water temperatures, adjusting lighting levels, detecting smoke, or setting off an alarm if an individual wanders. Monitors and communication devices can connect individuals with broader networks of formal and informal caregivers and peer communities. One problem, Sanford pointed out, is “Where do we put all this stuff?” Homes can get “obese” if too many products and technologies are crammed into them. Also, builders are very reluctant to build larger houses to accom- modate these devices. Builders have even resisted building stair steps that are seven inches high and have eleven inches of run because steeper but more dangerous stairs take up less room. To integrate health care products and technologies into the environment in a better way, devices can be combined so they take up less room. Another option is to rethink where and how activities take place in the home. Another approach is to adopt the principles of universal design (see the section on medical devices and equipment in Chapter 3). Universal design differs from either accessible design or assistive technology. Assistive tech- nology consists of add-on devices and specialized equipment to improve accessibility for an individual or small cohort of people with specific needs. Accessible design is added to everyday design to reduce demands on groups of people with similar types of impairments.

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0 HUMAN FACTORS IN HOME HEALTH CARE Universal design is everyday design, Sanford said, not specialized or add-on design. It reduces the demands of the environment on everyone, not just people with functional limitations, reflecting the fact that everyone has different degrees of ability. Universal design makes access the norm rather than the exception. It is part of the environment so that it is not obtrusive or obvious. Design features are easier to use and learn by both health care recipients and providers. Universal design can also eliminate the need for many assistive technologies and home modifications. Barriers to Housing Innovations There are numerous barriers to the adoption of housing innovations, on both the supply side and the demand side. Providers with expertise in environmental interventions are few. Certification programs are weak and are specific to only certain of the professions that provide modifications. A few universities and occupational therapy schools have classes and pro- grams in environmental intervention, but they usually depend more on individual faculty members who are interested in the topic rather than a group that supports them. Although the principles of universal design have been widely dissemi- nated, they have not been tested or validated. Some specific policies also create disincentives for universal design. For example, assistive technology may be eligible for reimbursement, but universal design is very unlikely to be reimbursed precisely because it is for everyone rather than for a specific person. “Our system cannot reimburse something that is basically usable by everyone because it is a system that is geared toward disability, not ability.” On the demand side, consumers are generally unaware of universal design and of many potential interventions. Modifications can look indus- trial and institutional rather than residential. Consumers see devices and technologies in homes and react negatively to them. “It’s a vicious cycle. Instead of coming up with new ideas, we just keep using the old ideas and recycling them over and over again.” Universal design does not have to be more expensive than other designs, Sanford said, especially if it is built into a home from the begin- ning. Wider hallways and doors do not add greatly to the cost. Appliances and other products can be more expensive, but that is usually because they are higher quality devices, which is a manufacturing and marketing issue.

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1 THE ENVIRONMENTS OF HOME HEALTH CARE Improving the use of Human Factors Research in the Physical Environment of Home Health Care Sanford described several policy changes that might increase the adop- tion of housing innovations: • Overcoming policy barriers to interventions in housing. Both governments and private insurers are reluctant to put money into people’s homes because they have no control over those homes. But modifications to local building and zoning codes could help modify the environment. For example, the zoning codes in single-family neighborhoods often dictate how many people who are not related can live in a house. This can make it hard to bring in care providers who may need to be in a home continuously. Similarly, by regu- lating other aspects of the physical environment, codes can assist individuals who provide health care in a home environment. • Creating incentives for universal design by recognizing it as a health care intervention. In part, this can be done by “medicalizing” envi- ronmental interventions. Physicians, nurse practitioners, and the many professionals who see people with health care needs can be educated about the importance of these interventions. “Prescrib- ing medications or prescribing a medical device is great, but what about prescribing how those medications are going to be taken in the home if you don’t have lights to read the labels or you don’t have a place for the medical device in the home? The home has to support all of the other health care interventions that we do.” • Certifying environmental service providers in the same way that other professionals are certified. To affect legislation and regula- tory policy, the efficacy and effectiveness of interventions need to be demonstrated for care recipients, for providers, and for society as a whole. Today, thinking about environmental interventions and universal design is based more on practice-based evidence than evidence-based practice. “If we cannot even define universal design and validate what designs will work, then it is all based on our practice.” Sanford also had ideas regarding a research agenda: • Quasi-experimental pre-/post-modification designs can be used to compare the effects of interventions with the effects of not having them. • Naturally occurring situations can be used in cases in which funders already have programs that are making modifications.

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2 HUMAN FACTORS IN HOME HEALTH CARE • Good outcomes are defined so as to be relevant to individuals, programs, and agencies on both the supply and demand sides of the equation. • Experts in the physical environment are essential to research studies and review panels. The high initial cost of environmental interventions makes randomized controlled trials very difficult. Crossover designs are less expensive, but the disruption of installing interventions is burdensome to the subjects. Epide- miological studies often lack a basic understanding of environmental fac- tors. And there is a lack of mutually agreed-upon outcomes and measures. Clinical significance may be more important than statistical significance, and small changes may equate to big gains in the quality of people’s lives. Responses to Questions Sanford observed that he does not draw a sharp distinction between devices to overcome environment obstacles and modifications of the envi- ronment itself. “It is not an either/or. If the environment were designed more appropriately in the first place, we would need fewer devices. Given that the environment is never going to obviate the need for all devices, then we need to better design the devices that will then fit within the environ- ments we have.” The interchangeability between the two categories makes trade-offs inevitable. Devices may be so expensive as to be equivalent in cost to extensive environmental changes. In response to a question about whether houses with environmental modifications are harder to sell, Sanford labeled such an idea a mispercep- tion. The actual effect depends on the attributes of the modification. “I can show you ramps that the only way that house would be bought is if it was the right price and somebody just needed to get in there. I can show you other houses where the ramps are lovely, and it looks like part of the house, even if it isn’t a sloping lot.” The crucial determinant is how a feature looks and fits in with the rest of the house. Because subsidized and public housing often have higher percentages of disabled individuals than in the general population, the U.S. Department of Housing and Urban Development has an interest in environmental modifica- tion, Sanford said. The building and zoning codes governing the construction of such housing have important effects on accessibility and usability. As Jon Pynoos observed, the Section 202 Supportive Housing for the Elderly Pro- gram requires 5 to 10 percent of units to be basically accessible with walk-in showers. “But the most future-looking developers of that housing are put- ting walk-in showers in all their units and finding that it works much better and gives people many more choices of where to stay in the buildings. So

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 THE ENVIRONMENTS OF HOME HEALTH CARE there is some response from the market end.” Sanford added that modifica- tions to existing housing provide opportunities to do pre-/post-modification studies in which people can act as their own controls. In response to a question about the best outcome measures for such studies, Sanford said that defining and agreeing on appropriate measures is a difficult task. Outcomes that might be dismissed as statistically insig- nificant could actually be making a major difference in people’s lives. “We don’t have a really good measure of what it means to the individuals who are getting these modifications.” Accessibility in the physical environment surrounding a house or apart- ment can be just as important as accessibility to and within it, Sanford said. Without an accessible environment, such as navigable sidewalks, people are “imprisoned in their homes, and that just doesn’t work. You can’t get to work, you can’t get to a place of worship, you can’t get to the market, you can’t get to the doctor, you can’t get anywhere. Our community environ- ments are less than accessible.” Furthermore, the Americans with Disabili- ties Act exerts little control over the community environment. Many of the issues affecting people with physical disabilities apply with even greater force to people with cognitive disabilities. As people enter into a cognitive decline, more caregiver assistance is necessary and independence diminishes. The need for assistance then shifts as much to the caregiver as to the care recipient. Sanford also pointed out that builders tend to be extremely conserva- tive and have few incentives to change. “Before the bust, they sold every- thing that they had. They sold it no matter how bad it was. They sold it as fast as they could build it. What is the incentive to do anything different? There was none.” As a result, making changes to support universal design or health and wellness is “a difficult sell.” Finally, incorporating design changes from hospitals and other institu- tional settings can be a good idea. “But it has to be residential in scale. It cannot just be translated from hospital to home.” THE IMPACT OF CuLTuRAL, SOCIAL, AND COMMuNITY ENVIRONMENTS ON HOME HEALTH CARE2 Steven Albert began his talk by describing two care settings that he encountered in his first job, at the Philadelphia Geriatric Center. In the first, a middle-aged African American woman was caring for her mother, 2 This section is based on the presentation by Steven Albert, professor and associate chair for research and science in the Department of Behavioral and Community Health Sciences of the University of Pittsburgh. For more information and for references to the information cited in this presentation, see Chapter 11.

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 HUMAN FACTORS IN HOME HEALTH CARE who had Alzheimer’s disease, in a northern Philadelphia home. She had placed the hospital bed in the living room right by the front door, where everyone who came into the home had to see and interact with her mother. Over the hospital bed hung a mobile with photos and family keepsakes attached to help orient her mother. The shelves around the living room held supplies, including adult diapers, wipes, and everything else needed for Alzheimer’s care, and there was a commode right next to the bed. The daughter said to him, “‘This is the best-looking lady with Alzheimer’s dis- ease in Philadelphia. Touch her skin. Touch her hair.’ That, as a very young man, left a very good impression on me.” That same week he went to another home where a person with simi- larly profound Alzheimer’s disease, mostly confined to a hospital bed, lived upstairs in an isolated, poorly maintained room that few people entered. “What is involved in this sort of contrast?” asked Albert. “Is it a cultural factor? Is it social or family factors? Is it community factors, since these were different communities? . . . Many, many things go into what kind of adaptation families think is reasonable in the case of severe chronic dis- ease care.” The Social-Ecological Model One approach Albert uses to analyze these issues is a social-ecological model that places the individual in successively broader family, community, and policy contexts. This model makes it possible to see how definitions of challenges and resources at each level may be linked or depend on pro- cesses at a different level. For example, a home care challenge may require disruption of home routines and the home environment. This decision may be informed by a strong filial obligation, social traditions of home care, or an expansive cultural definition of “home.” All of these factors can affect the choice to adapt the home for intensive medical care. Similarly, a family decision to disrupt family relations may depend on a supportive division of labor within the family, family networks that allow appropriate information gathering, the willingness to include home health care staff as family, or perhaps modification of a home. At the level of the community or neighborhood, the challenge might be the availability of home health care providers, and relevant resources might include neighbor- hood support of medical technology in the home, reliable services, and an appropriate infrastructure for home medical equipment. And at the policy level, eligibility for services might depend on linkages between providers, the quality of home technology, the reputation of providers, and waiting times. “The basic idea in social ecology is that what happens at one level may be relevant for decisions at another level. . . . We can go up and down levels and see additional layers of complexity.”

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 THE ENVIRONMENTS OF HOME HEALTH CARE Home Care Culture A model used to analyze the culture of home health care defines culture as shared beliefs, knowledge, feelings, and expectations that carry motiva- tional force. Albert draws on ideas from cognitive anthropology to elicit cultural expectations about home care that are relevant for decisions about the use of services. In particular, he has used cultural consensus theory to determine the degree to which ideas are shared and the extent to which individual expectations are consonant with a group consensus. An example would be asking family members and caregivers to con- sider what changes in a home would be appropriate when a family member is seriously ill and may die. People would then generate lists of changes to their homes or their own behaviors that they think would be appropriate. Another question might be: What changes in your household would you need to make in order to provide quality care for a family member receiving home health care services? Not much research has been done in this area, but Albert speculated that studies of family caregivers would show differ- ing preferences for such interventions as home hospice services, infusion technologies, hospital beds, the placement of commodes, telemonitoring, places to store supplies, or more reliable utilities. By generating lists of this type, researchers could calculate the extent to which lists overlap and the degree of consensus surrounding any given intervention. It may be possible, Albert said, to identify subcultures of people based on lists of what is appropriate and correlate those subcultures with care- giving choices. For example, a list may demonstrate a commitment to family care originating in filial piety. This in turn may be linked to choices about the use of formal providers or receptivity to an in-home medical technology. These kinds of decisions could be linked to caregiver training, communication with health care providers, exposure to health information, and perceptions of stigma associated with disability. Social and Family Relationships Familism—the subordination of individual interests to family concerns— can affect decisions about home health care in many different ways. It may reinforce individual cultural expectations for home care. It may also place such great stress on families to provide this care that it interferes with the care. Families “differ in their consensus about care and their willingness to divide the labors of care,” said Albert. Preferences for dignity, privacy, comfort, choice, and autonomy may not take precedence over more basic decisions about care. “Once someone achieves a certain level of chronic care need, families seem to be more will- ing to compromise on these.” An interesting natural experiment related to

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 HUMAN FACTORS IN HOME HEALTH CARE these issues is the Cash and Counseling Demonstration Project conducted by the Centers for Medicare & Medicaid Services in Alabama, Arkansas, and New Jersey.3 It allowed people who qualify for home care to hire their own caregivers, work out scheduling, and influence the training of a caregiver rather than being assigned a home care paraprofessional and a package of services. Results suggested some positive outcomes.4 “This [was] a very nice experiment, because we can see whether greater consumer direction leads to different outcomes.” For example, will people use their funds to purchase medical assistive equipment? How will they use home paraprofessionals? “One of my hypotheses might be that with greater consumer direction we might see more effective use of home care technologies,” said Albert. Community and Neighborhood Factors At the community and neighborhood levels, safety, access, the infra- structure of neighborhoods, the physical features of homes, social net- works, and the degree of linkage between home care agencies servicing a community all need to be considered. For example, neighborhoods with greater linkages among home care providers diffuse innovations and share information better, which benefits consumers who need such help. “We don’t normally think about that as being a health resource, but it most likely is.” Social networks can also have properties that are protective of health. Many studies have shown that neighbors checking on each other or com- mon spaces in a neighborhood where people can go can be important health resources. Improving the use of Human Factors Research in Cultural, Social, and Community Environments Albert had several ideas for action: • Expanding consumer direction–type demonstrations (like Cash and Counseling) to include not only greater control over hiring and sched- uling but also greater control over the adoption of in-home medical technologies. • Establishing cultural competence training and certification for allied health home care providers. In New York City, some agen- cies have reported that the racial/ethnic cultures of the home care 3 The Cash and Counseling Demonstration Project has ended, and similar programs have since been implemented in multiple states. 4 See Chapter 12 for a description of these outcomes.

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 THE ENVIRONMENTS OF HOME HEALTH CARE paraprofessional and the care recipient are different 80 percent of the time, and in a third of those cases the care provider and the recipient do not even speak the same language. In the area of research, he suggested the following: • Studies of home care culture to assess intracultural variation and cross-cultural differences. Such studies may lead to better tools for assessment of cultural expectations for home care. • Cross-level investigations of the choices people make to modify homes, use home care paraprofessionals, adopt advanced home care technologies, or some combination of the three. Such studies could help clarify the results of inconsistent studies that have focused on a single level. Albert also presented several research hypotheses that could be inves- tigated. One is that familism probably will be a poor predictor of home adaptation unless a broader perspective and a more sophisticated approach are adopted. Another is that greater consumer direction in home care may lead to better use of home care technologies. And a third is that families in areas with fewer resources, who often are forced to accept greater standard- ization of services, experience greater conflict and poorer outcomes. Responses to Questions Albert observed that the model he described applied to the decision to let a care provider into the home or make environmental modifications. But the model can also be applied to the relationship between a care pro- vider and a care recipient. Many care providers are appalled, Albert said, at the lack of concern families show to a person who needs help. This is an example of a culture clash that can be exacerbated, for example, by the personalities of the people attracted to work in the field of home health care. “[Professionals] think care to a frail person or a disabled person is the most important thing in the world,” Albert remarked. Lessening this clash requires that families be educated, but it also requires that care providers learn to maintain a proper professional distance. “They often feel they have to buy food for a person, for example, or they get in the middle of conflicts between family and the disabled person who needs help.” These kinds of conflicting expectations can produce very difficult situations. In response to a question about training and certification of home care providers from cultures different from that of a care recipient, Albert called attention to the boredom that such jobs can entail. “They get very good at what they’re doing. They can cook, clean, do the personal assistance

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8 HUMAN FACTORS IN HOME HEALTH CARE care in 45 minutes, and then they have another three hours in the home, and they end up watching television with the elder. We have squandered a wonderful opportunity for activity programming and other sorts of things that these paraprofessionals could learn and enhance their skills.” The same observation applies to many other kinds of caregivers, whether formal or informal. An important issue is deciding which types of care are done better by a human and which are more appropriate for technologies. Home caregivers provide social support and forms of monitoring that cannot be achieved with technology. Many of these forms of support and monitoring may not appear on a task analysis, but human support can be extremely flexible and valuable. In response to a question about ethnic and racial differences in per- ceptions of home health care, Albert acknowledged that there are broad differences among groups. Minorities are less likely to use nursing homes, for example. African Americans, however, are more likely to prefer hospital care and more aggressive care at the end of life rather than hospice care. Hispanics are more reluctant to have paraprofessional caregivers in the home. These differences are not well understood. They could come from familism or from some other factors. It also is difficult to determine how much is due to a cultural orientation or expectation and how much is due to lack of knowledge. These questions need to be studied rather than pre- suming causes for such differences. FINANCE, REGuLATION, AND CLINICAL MODELS5 The current system of delivering health care to the elderly is not sustain- able, said Peter Boling. The Medicare Trust Fund, which pays for hospitals, nursing homes, and home health care, will run out of money in 2018, with obligations for publicly funded health care continuing to grow dramatically after that point. “We’re sailing on a massive ship,” said Boling. “It has hit an iceberg, and we have to do something or it is going to sink.” Spending on individual Medicare beneficiaries varies greatly across states, from a maximum of $16,000 in 2006 to a minimum of $5,000. Yet spending is not associated with quality of care. “People are looking at these numbers and saying we need to really change what we’re doing.” According to the National Health Interview Survey, 2 to 3 percent of people age 65 and older say they cannot walk, stand, or sit by themselves, 5 This section is based on the presentation by Peter Boling, director of long-term care and geriatrics in the Medical College of Virginia Hospital at Virginia Commonwealth University. For more information and for references to the information cited in this presentation, see Chapter 12.

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 THE ENVIRONMENTS OF HOME HEALTH CARE and about 15 percent of this population cannot stand or walk without help. The survey also shows that about 2 million people in the United States have deficits in three or more activities of daily living, including about 1.1 million people age 65 and older. These numbers are expected to grow dramatically as the baby boom generation starts to reach retirement age. Home Care Silos Home health care, which represented about 4 percent of the $484 billion Medicare budget in fiscal year 2009, is broken into a variety of separately funded categories—called “silos” in the field of health care financing—based partly on payment sources and regulations. (“Silo” is a metaphorical term often used to describe artificial boundaries among domains of expertise, services, jurisdiction, or interest that serve to discourage communication, interaction, or cooperation.) Medical equipment and supplies are paid for largely by Medicare Part B and Medicaid. Home health agency care is paid mostly by Medicare Part A, by Medicaid, and privately. Personal care is paid mostly by Medicaid and out of pocket but not at all by Medicare. Pharmacy benefits are paid by “an enormous, complex panoply of orga- nizations” under Medicare Part D, private coinsurance, and Medicaid. Medical care is paid for mostly by Medicare Part B and Medicaid. These silos are not coordinated with each other, and hospitals and physicians often work in their own separate silos. The system does not have a way of considering care across time or institutions. “This is not patient- centered care in any way, shape, or form,” said Boling. “And we have good evidence that it’s dangerous.” About 5 percent of Medicare beneficiaries account for 43 percent of the Medicare budget, with the next 5 percent using 18 percent. The top 5 percent of beneficiaries consumed an average of $63,000 in 2005, the next 5 percent consumed $27,000, and the bottom 50 percent just $550. Thus, three-fifths of the Medicare budget is consumed by 10 percent of the population, whereas the bottom half uses only 4 percent of the budget. This concentration of resources in a small portion of the Medicare population presents a great opportunity, said Boling, if much better care management can be targeted to this group. This group is typically chroni- cally ill. Among members of this group followed for 60 months from 1997 through 2001, health care expenditures were high in 22 of those months. “That’s a person who is intermittently chronically ill. No one can stay criti- cally ill for 22 months in the hospital. These are people who go in and out of the hospital, in and out of health care, using the system a lot, and don’t die, and we do a terrible job of taking care of them.”

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0 HUMAN FACTORS IN HOME HEALTH CARE Categories of Care Boling divided the general population into six categories requiring dif- ferent levels of care: A. No illness (acute or chronic). B. Ambulatory, independent; some chronic conditions. C. Function limited, need support for activities of daily living (ADLs); younger, not in ill health. D. Older, cognitive or functional impairment; not acutely ill very often. E. Postacute rehabilitation; returning to independence. F. High comorbidity and illness burden. Groups A and B are essentially healthy. They need public health infor- mation, prevention, episodic care, and self-care. Some of them have chronic diseases, such as hypertension, diabetes, or asthma, for which they can be tested and monitored. They are mobile and can use a doctor’s office. Groups C and D are function limited for various reasons that can vary by age. They are not medically ill often, but they need considerable long- term care support. Groups E and F are chronically sick and are often in the health care system. Many, particularly in Group F, need lifelong care and highly indi- vidualized health care plans that change according to their needs. Long-Term Care The U.S. health care system needs reform both in the area of community- based long-term care and in the area of chronic illness care for seriously ill people, said Boling. In the first category, many people in Groups C and D need personal care for ADL support, which can be provided by home health aides, family, or friends. Many also need assistive technology, ranging from supplies to the wide range of technologies being tested in smart homes. If these indi- viduals have access to Medicaid, they have access to much more assistance. But that depends on their income and where they live. The federal poverty level in 2009, often used as a qualifier for Medicaid, was just $10,830 for a family of one, $14,570 for a couple, and $22,050 for a family of four. State funding of Medicaid as a percentage of gross state product ranges from less than 1 percent in three states to over 4 percent in two states. “That is a big range, and that is a problem. That is going to influence whether people stay in the state where they’ve been living or . . . move to a state where their family members are.”

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1 THE ENVIRONMENTS OF HOME HEALTH CARE Paying privately can be done through an agency, which extracts over- head from the payment, or through an individual care provider. Direct employment can be highly beneficial, but it is not easy to arrange and is not the prevalent mode of home health care (see discussions above of the variety of home care arrangements). A variety of new models have been tested for the delivery of long-term care. For example, the Centers for Medicare & Medicaid Services Cash and Counseling demonstration project has shown improvement in caregiver satisfaction and decreases in measures of caregiver strains. A recent survey, the Consumer Assessment of Health Care Providers and Systems, has also been evaluating the quality of care from a consumer perspective. Chronic Illness Care For the seriously ill people in Groups E and F, programs of postacute care paid for by Medicare Part A work reasonably well for at least a por- tion of the population. But weaknesses are common in transitional care, in which people are moving between care environments. Largely missing from health care services for seriously ill people is long-term ADL support, unless a recipient is poor, on Medicaid, or has an advanced chronic illness. ADL care may be provided only for short, predetermined periods. In the Medicare model, prospective payments have been available since 2008 for 60-day episodes with case mix adjustments. This has resulted in a decrease in the frequency of visits and a more focused care model. However, 29 percent of the recipients are hospitalized within 60 days, and one in seven is hospitalized within 2 weeks of the end of the care period. “Most folks would say that this is really a mediocre track record,” said Boling. Several recent attempts to reform long-term care for the chronically ill have failed. The Medicare Coordinated Care demonstra- tion, which basically assigned nurses to talk with patients, had an average net increase in costs and was marginally effective in only 2 of 13 sites. The Medicare Advantage plans have had a 13 percent net increase in cost, with a decrease in service and a decrease in perceived quality by enrolled indi- viduals. Interim results from the Medicare Disease Management program indicate that commercial disease management does not deliver short-term medical cost savings. Other programs have had more success. A program based on having nurses serve as health coaches, along with an enhanced health record, helped individuals become their own advocates as they moved through the posthospital period, and it saved about $500 per person. Another program has suggested that cost savings may result by putting a nurse in the doctor’s office and having that nurse coordinate care. In a third program, nurses saw patients in the hospital, got to know them, and then followed them for

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2 HUMAN FACTORS IN HOME HEALTH CARE a month to 6 weeks at home. The nurses coordinated care, changed care plans, and interacted with the doctors, with a net savings of about $3,000 to $5,000 per patient. And the Department of Veterans Affairs has found that putting a comprehensive home-based primary care model in place produced a 24 percent reduction in overall cost and a 60 percent reduction in hospital use. Home Visits When people are concerned about their health or the health of a family member or friend, they want access to a team led by somebody who is able to make medical decisions, provide good advice about complex problems, and be accessible and available. “This is not what we have for this popula- tion,” said Boling. One solution to this problem is “old-fashioned medicine with a new twist” based on house calls. To take good care of chronically ill people, providers need to go to their homes. New technologies and devices make it possible to do timely diagnoses and direct treatment in homes. “In the past you had to be kind of a wizard and intuit what was wrong with the patient. [Now] we can measure most of the stuff that you need to know right there on the spot.” A few such programs supported by Medicare Part B exist across the United States, although on very thin margins. “We built our health care system around a model that was dependent on bricks and mortar and fixed overhead that is very expensive. It was done for good reasons. It wasn’t a bad idea. It works quite well for certain types of people. [But] for some other people, who happen to be the ones who cost most of the money, it really doesn’t work very well.” The costs of drugs, hospitalization, and nursing homes are exorbitant and could cover a large number of home visits and the involvement of a team of health care providers. Based on this observation, Boling has been working on a piece of health care legislation, called Independence at Home,6 that calls for interdisciplinary teams that would use house calls, electronic health records, other forms of technology, and their own expertise to deliver care where and when people need it. Any net savings would flow both to Medicare and to the Independence at Home program. Candidates for the program would be people with multiple chronic diseases or functional defi- cits. “We want high-cost patients, the higher the better, the sicker the better. That’s what we do best. . . . This is really what patient-centered health care is supposed to be.” Estimated savings from the program could be as high as $50 billion per year. 6 The 2010 health care reform act includes provisions for an Independence at Home dem- onstration project.

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 THE ENVIRONMENTS OF HOME HEALTH CARE Boling closed by emphasizing two points. A national policy is needed for long-term care that does not impoverish people and encourages community- based care. And there is a great need for interdisciplinary, comprehensive, in-home health care for people with multiple frailties. Responses to Questions In response to a question about how much of health care expenditures go to bureaucratic, regulatory, and legal paperwork, Boling agreed that doing paperwork is “what we all remember the least favorably of our experi- ences as providers.” But he added that it is necessary to document how care is being delivered and how it affects the care recipient. Much paperwork has been created to make sure that value is provided in exchange for dollars. “There has to be some mechanism of documenting the impact, . . . because funds are not unlimited.” Boling was also asked whether the states, which have different popula- tions with differing needs, should be allowed to have more control over how they use their health care monies. A good case can be made for states having control over services that are a public good, he replied, but too many differences between states can have serious negative effects. People cannot move from one state to another without major disruptions in ser- vices and funding, which may restrict freedom of movement or how people and families organize their lives. “We have to strike a balance there as well. That’s one of the reasons why the [health care reform] process has been so enormously complicated.” The parts of the Independence at Home legislation that he views as most important are attracting talented people to the field, creating teams that can go to care recipients, and aligning financial incentives with objec- tives. “If the objective is comprehensive care with less dependence on hos- pitals and nursing homes, you need to structure the financial parameters in such a way that you are paying to obtain those results.” In addition, research has shown that home visits yield marked improvements in detec- tion of and intervention in significant health problems. People who make home visits are also more adept at obtaining the resources needed and making appropriate referrals. DISCuSSION Discussant Carol Raphael, president and chief executive officer of the Visiting Nurse Service of New York, began the discussion by articulating three messages:

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 HUMAN FACTORS IN HOME HEALTH CARE 1. The physical environment, including the philosophy behind hous- hous- ing design, can enable or diminish the ability to live independently, perform ADLs, and manage health. 2. An individual’s cultural expectations, social supports, neighbor- neighbor- hood, and community all have effects on openness to home health care, interaction with caregivers, and subsequent outcomes. 3. The current state of financing, regulation, and delivery of home health care limits its potential contribution to making the health care system more effective and efficient. She also pointed out a number of common themes that emerged from the discussion, including the issues of silos versus integration, downstream versus upstream interventions, misalignment or lack of incentives, the need for engagement of care recipients, and the potential of technology as a virtual integrator and enabler of health care. Many of these themes are apparent in the work of the Visiting Nurse Service, which sees 30,000 people a day in home settings. “When you walk into a home, you never know what you are going to find,” said Raphael. “It ranges from no heat, no food in the refrigerator, a very poorly kept apartment, pets (the second-largest cause of workers’ compensation in my organization is dog bites), and a remarkable range of family constellations, from very, very supportive families to families who have ‘checked out.’ So it is not at all a monolithic picture.” The home care population is remarkably diverse, not only in age and background but also in the capacity to lead independent, autonomous lives. Most people want to hold on to their privacy and independence to the greatest extent possible. People can also vary along a continuum of needs over time, which highlights the need for fluidity and flexibility in home care. One way to achieve these objectives is to incorporate family caregivers into the home care community. For example, in its hospice and palliative care programs, the Visiting Nurse Service defines the client as not only the care recipient but also the recipient’s family. Families are trained as part of the care team, they receive satisfaction surveys, and the nurse service con- tinues to work with the family for more than a year after a death. The Visiting Nurse Service has also done considerable work on aging in place programs to help residents stay in their homes and communities. The service becomes part of the fabric of communities, performing screenings, assessments, and group health education and providing certified home care services if needed. It also works in 31 of the 44 naturally occurring retire- ment communities in New York, including a new one in Chinatown that extends over a large area. “We’re looking at that as a model for suburban communities where we have to [work] across many blocks.”

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 THE ENVIRONMENTS OF HOME HEALTH CARE Some models used by the program incorporate medical management. The Visiting Nurse Service of New York is licensed as a health mainte- nance organization in New York state and has a Medicare Advantage Special Needs Plan. In addition, a new program imported from the United Kingdom, called the Community Connections TimeBank, matches the skills and assets of individuals in the community with the needs of community members. “We have had an enormous response in terms of the number of people, often living alone, who have been able to feel comfortable taking a service because they feel they are also making a contribution.” Finally, Raphael noted that she is the head of the Health Information Technology Board in New York state and is very interested in how tech- nology can be an integrator in health care. “The promise here is enormous [and] untapped. We can do a lot more to share information at point of care as well as to transform environments.” In response to a question about the lack of geriatricians in health care, Boling pointed out that the rewards for physicians and nurse practitioners in geriatrics are modest when compared with specialties with similar levels of professional development. Yet geriatricians provide care for people with complex problems and should be paid well. The Independence at Home program would create an incentive structure to pay geriatricians what they are worth. “We need more people who have that as a focus, and we have to create an incentive structure that rewards it.” Boling also agreed with a comment made about providing care in a variety of settings, such as schools, community centers, and senior centers. “I am not at all a fan of people having to come to a hospital or to a medical center for chronic illness care, because I don’t think that for the majority of those folks we are doing them any good by making them do that.” David Wegman emphasized the importance of human factors research in the discussion, to which Sanford responded that occupational therapists could be trained and encouraged to be part of home health care teams. They could bring new attention to the influence of the built environment, even as physicians, nurse practitioners, and other clinicians are trained to be more observant of that environment. In response to a question about passive monitoring, Raphael described a test in which 400 people with congestive heart failure were telemoni- tored while 400 comparable people were not. After one year, the tele- monitored group had reduced emergency room visits and hospitalizations and other positive indicators. “It is definitely something that needs to be looked at very seriously. We had much better patient acceptance than we thought we would.” Albert observed that the responsibility for accessing medical devices in the home is not always clear. In some cases, families are expected to research and purchase equipment. In other cases, physicians are expected to prescribe

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 HUMAN FACTORS IN HOME HEALTH CARE it. Or allied health professionals or vendors may introduce devices into the home and train families in how to use them. This issue, he said, “needs to be explored more carefully.” In response to a question about the logistics of home visits, Boling observed that traveling to care recipients has advantages over recipients traveling to care providers because most recipients are always at home, so people can be added to a schedule at the last minute. “I could see them within hours of the time that they need to be seen, not days or weeks. They don’t have to make an appointment. I go. If I can’t go, somebody else on my team goes.” With a good dispatch office and communications network, logistical problems are less severe than with traditional health care, and recipients are more satisfied. “You don’t see as many patients per day,” Boling admitted. But “those who are counting widgets and thinking in that way need to think differently about how this whole things works, because how many patients you see per day [is] really not the sole agenda.” Sanford added that the use of interactive teleconferencing can bring health care providers into the home virtually. In that way, providers can see someone engaged in an activity in the place where they actually perform that activity.