Service Use and Transitions: Decisions, Choices and Care Management among an Admissions Cohort of Privately Insured Disabled Elders. D. Decision-Making Process

12/01/2006

One of the goals of this study is to understand why people make the decision to begin using paid care when they do, and how they choose where to receive that care. Are the decisions based on the availability of care, the disability level of the insured, or the availability of family supports? Or are there other factors involved? While researchers have examined this issue, few studies have been able to focus on decision-making at the time that services are put in place. Often disabled elders or their family members are asked to recall a process that may have occurred a year or more ago. One can imagine a situation where an elder had no desire to go in to a facility, but whose family members felt it was important for their safety. As time goes by, the institutionalized individual develops friends and a sense of belonging so that when asked if going to a facility was their first choice, or if they are happy with choosing a facility over care at home, they may answer yes. In this longitudinal study, our intent is to learn about decisions and satisfaction levels close to the outset of an episode of service use and see if and how these change over time.

This study examines three important aspects of the decision-making process. These include the decision to: (1) begin using any paid care; (2) choosing a specific type of care or location of care (i.e., home care versus nursing home or assisted living), and; choosing a particular provider of that care (i.e., the choice of ABC nursing home versus XYZ nursing home).

When interpreting answers to decision-making and satisfaction questions, it is important to understand whether or not the person providing the answers was involved in or is knowledgeable about the process. We asked each respondent if they were the primary decision-maker and in almost all cases they were was either the sole decision-maker, one of a pair or group involved, or was able to answer accurately on behalf of the decision-maker(s). It is often the case that if someone other than the insured was involved in the decision, it is a group of people (such as the children or spouse and children).

Beginning Paid Care Use

The first important issue we sought to understand was the point at which individuals feel they are disabled enough to access paid care and make claims on their LTC insurance policy. Understanding what motivates people to begin accessing paid care has important implications for planning and development of the LTC service system. We have seen previously that those who are already receiving paid care at the time that they contact their insurance company are more disabled and less likely to have family members providing care, so perhaps their motivations for engaging service providers are different as well. To examine this, we asked each participant what caused or motivated him or her to begin using paid care and file a claim. Figure 10 summarizes the most common responses.

FIGURE 10: Most Common Motivation for Starting Paid Care by Service Setting

People in all four service settings indicated that needing more help or the inability to continue to manage on their own was the most common motivational factor behind the decision to begin using paid care. The number was significantly smaller for nursing home residents than for other service settings. The responses given by those currently residing in nursing homes were much more varied (less clustered around a small finite number of issues) than those in the other service settings. Those who are not yet receiving paid care, but intend to obtain services within the next few months seem to have similar motivational issues to those who are already receiving paid care. Interestingly though, they are more likely to indicate that the unpaid care they have is insufficient to meet their care needs. This would seem to imply that although a high proportion is currently receiving unpaid care, they may be getting worse and the support they are receiving from unpaid sources is no longer sufficient. Put another way, as the family support system experiences greater demand and strain, it is likely to require supplemental support from the formal (paid) care system.

Clearly one would expect that the decision to begin using care is related to disability status. Figure 11 illustrates the relationship between disability status and the reasons why individuals began using formal paid services.

FIGURE 11: Most Common Motivations for Starting Paid Care by Disability Status

While needing more help is still reported as the most common motivation among all levels of disability, there are some variations in the other motivations. Those claimants who are most disabled are the least likely to say that an acute incident was the most common motivation for care; they are also least likely to say that their unpaid care was insufficient. Also, those with cognitive impairment are twice as likely as those who have less than two ADL limitations to say that safety concerns are the most common motivator.

Choosing Where to Receive Care

In conjunction with understanding the issues that motivated paid care use, we also sought to understand the issues that were important when thinking about where to receive care. Participants were offered a list of five values, each of which was theoretically related to service choices. Respondents were asked to rank them in order of their importance. The nurse assessors were instructed not to allow respondents to rank any two items the same. The five items included:

  1. Maintaining personal privacy;
  2. Feeling safe where I am;
  3. Having someone available to assist me when I need them;
  4. Having control over my own schedule/daily routines;
  5. Being around peers and acquaintances.

Figure 12 shows the distribution of the sample as a whole and the characteristic that was ranked as most important most often.

FIGURE 12: Proportion Ranking Characteristics as Most Important when Thinking about Where to Receive Paid Care

Of the five items offered, having someone available to assist when needed was ranked as most important thing considered when thinking about where to receive care for over half of those surveyed. This was followed by roughly two in seven saying that feeling safe was the most important when choosing service setting. Given that a large number of insured’s indicated that needing more help was the most common motivator for beginning paid care use, it is understandable that the majority would also say that the availability of helpers was the most important to their choice of service setting.

It might be hypothesized that different factors would be important to claimants who choose different service settings. For instance, it may be that safety is the most important issue for those who choose nursing homes, while maintaining personal privacy would be least important. Conversely, maintaining personal privacy could be the most important issue to those choosing paid care at home. Table 4 shows the distribution of those ranking an issue as most important by various socio-demographic characteristics as well as by service setting.

TABLE 4: Ranking of Values by Socio-Demographic and Service Setting Variables: Proportion Ranking the Characteristic as Most Important
  Maintaining Personal Privacy Feeling Safe Having Assistance When Needed Having Control Over Routines Being Around Peers
Setting
   Home care 10% 21% 52% 12% 5%
   Nursing home 4% 29% 61% 3% 3%
   Assisted living 4% 37% 54% 3% 2%
   Not yet receiving paid care 9% 28% 49% 10% 4%
Disability Status
   Less than 2 ADLs 10% 27% 48% 11% 5%
   2-4 ADLs 9% 29% 51% 8% 3%
   5+ ADLs 4% 27% 59% 6% 4%
   Dementia 5% 34% 52% 5% 4%
Age
   Less than 65 6% 20% 55% 14% 5%
   65-74 6% 29% 51% 10% 4%
   75-79 8% 30% 52% 7% 3%
   80-84 8% 29% 54% 7% 2%
   85+ 8% 26% 53% 8% 5%
Marital Status          
   Married 9% 23% 56% 8% 4%
   Unmarried 7% 30% 51% 8% 4%
Gender          
   Male 10% 24% 55% 7% 4%
   Female 7% 29% 51% 9% 4%
Parental Status          
   Have children 8% 28% 53% 8% 3%
   No children 7% 28% 52% 8% 4%

Interestingly, we found that having someone available to assist when needed was ranked most important most often among all respondents regardless of service setting, followed by the desire to feel safe. However, nursing home residents were more likely to rank having someone available as the most important issue than those in other service settings. Having control over schedules was ranked higher among those living in the community than those in facilities and feeling safe was ranked as most important by ALF residents more often than by those in other service settings.

We next asked a series of questions designed to determine whether service settings other than the current one were considered. A set of three questions was asked, each one representing a stronger interest in alternative settings. First, we asked if other care settings were considered, then if they were visited and finally if the insured is on a waiting list for any other care settings. We surmise that considering other options shows less intention than actually taking the time to visit. The strongest intention to be somewhere else is represented by being on a waiting list at an alternative care setting.

Figure 13 shows that those currently receiving paid care at home are the least likely to have considered alternative care settings. ALF residents seem the most likely to have considered all of the other options, with more than one-third stating that they considered staying at home, moving closer to or in with family and almost one-third considering moving to a nursing home. This may be reflective of the advanced age. While they may be less disabled than those in nursing homes or home care settings, they may be more frail or feeling vulnerable given their advanced age.

FIGURE 13: Consideration of Alternative Care Settings

Figure 14 shows the distribution of those taking a more serious step toward consideration of alternative care settings. For the most part, the majority of people did not visit a nursing home or ALF; however, those currently residing at home, regardless of whether they are receiving paid care yet or not, were the least likely to have visited a nursing home or ALF. Almost half of both nursing home residents and ALF residents visited the other type of facility.

FIGURE 14: Visited Alternative Care Settings

Figure 15 shows that although many participants may have considered other care settings and may even have visited a nursing home or an ALF, they are, for the most part planning to stay where they are. Only 8% of current nursing home residents said they are on a waiting list for an ALF, while 6% of those not yet receiving paid care indicated that they were on a waiting list for an ALF or to receive care at home.

FIGURE 15: On a Waiting List for Alternative Care Setting

For those not yet receiving paid care, we asked them where they intended to receive assistance and the results are shown in Figure 16. Not surprisingly, the majority (88%) intends to receive paid care at home, with another 9% planning to move to an ALF. We also asked this group if they had made arrangements for a specific home care provider, nursing home or ALF and only 30% said that they had. Given that they have all contacted their insurance company with a claim inquiry, this suggests that they are waiting to determine whether and what their policy covers before contacting and making specific arrangements with service providers.

FIGURE 16: Intended Care Setting for those Not Yet Receiving Paid Care

In order to understand responses regarding satisfaction with care setting and provider, we needed to know whether or not the insured was receiving care in the location of their first choice. In other words, even though it is widely believed that given the choice, people would remain at home, is this truly the case? Figure 17 shows that the overwhelming majority of home care recipients are in fact receiving care at their first choice location. While the majority of nursing home and ALF residents are receiving care at their first choice as well, the number is significantly lower than for those in the community, with only two-thirds of nursing home residents indicating they are in their first choice location.

FIGURE 17: Current Care Setting was First Choice

For those who were not receiving care at the location of their choice, we asked why they were unable to do so. There was no clear consensus among the small number of home care recipients who were not where they would have chosen to be. Among the 35% of nursing home residents and one-quarter of assisted living residents for whom a facility was not their first choice, the most often cited reason was that they required a higher level of care than they could obtain from their first choice care location. Of the 7% of current home care recipients that were not receiving care at their preferred location, 40% would have chosen to go to an ALF and another 25% would have chosen to attend adult day care instead of having someone come in to their home to care for them. Figure 18 shows the first choice locations of those facility residents for which a facility was not their first choice.

FIGURE 18: Location of First Choice for Those not Receiving Care at Preferred Location

Not surprisingly, the majority of nursing home and assisted living residents who were not in their first choice location would prefer to be living in the community, either receiving paid care at their own homes or living with family members. Almost a third of nursing home residents would have preferred to be in an ALF instead.

To further understand what went in to the decision to use one particular care setting as opposed to another, we asked about the most important things considered when choosing where to receive care. Figure 19 highlights the general consensus that when given the choice, elders prefer to receive care in their own homes; in fact, the most important consideration for those receiving paid care at home was to remain in their own home (68%), and another roughly one in ten cited independence. But what are the important considerations for those in nursing homes and assisted living? Over two-thirds of nursing home residents (69%) said having the appropriate level of care was most important, followed by another 12% respectively stating availability of care and proximity to family as important in their decision to choose nursing home care over home care or going to an ALF. Those residing in ALFs had a wider variety of issues that were important to them. About two-thirds (36%) said that availability of care was one of the most important things when choosing assisted living over nursing home or home care, while 26% said it was having the appropriate level of care and 23% said safety concerns.

FIGURE 19: Important Considerations when Choosing Care

In addition to responses obtained from an open ended question about the most important issues considered when choosing the type of care setting, we presented participants in each service setting with a series of true/false statements regarding their choice compared to other options. The questions were tailored to particular service settings. For example, we asked paid home care recipients about nursing homes and ALFs, current nursing home residents about home care and assisted living and so on. Figure 20 shows responses among home care recipients. As expected, almost everyone said that going to a nursing home or ALF was not desirable. Of those who were aware of the quality and cost associated with local nursing homes and ALFs (about 40% of home care recipients), half agreed that the costs were too high and the local facilities did not meet their personal quality standards. The attention paid to cost is interesting in that insurance covers the vast majority of LTC costs. This does suggest that because most policies provide access to a pool of benefits, it is in the interests of policyholders to take into account cost, since in so doing, they can “stretch” their benefits. That is, shopping for lower cost alternatives enables insurance benefits to last longer.7

FIGURE 20: Current Home Care Recipients Agreement with Statements about Alternative Care Settings

Figure 21 shows the responses for nursing home and ALF residents. For clarification, nursing home residents were offered the statement, “It would be most comfortable in nursing home” and assisted living residents were offered the same about assisted living. The chart shows that while 86% of ALF residents indicated that statement was true, only 63% of nursing home residents did. However, almost all of nursing home and ALF residents stated that a nursing home was the safest location for them. Most notable is the fact that almost three-quarter of the nursing home residents indicated that there were no other options in the area, while only 29% of ALF residents said the same. This suggests that there are significant gaps in the service infrastructure, especially for those who are seeking assisted living or home care in lieu of nursing home care. Given the differences between those who chose assisted living and nursing home care, it remains that those who choose a facility feel that they are safest there and that it had become too difficult for them to manage at home.

FIGURE 21: Current NH and ALF Residents True Responses to Statements about Alternative Care Settings

Choosing a Specific Care Provider

The third aspect of the decision-making process is focused on choosing a specific provider, agency or facility from which to receive care. There are a number of characteristics that can affect the choice of a specific provider such as cost, quality, availability and the like. In order to understand responses to specific issues, we first asked if paid home care recipients had interviewed multiple caregivers, nursing home residents had visited other nursing homes, ALF residents had visited other ALFs and those not yet receiving paid care had taken any of these steps.

Figure 22 shows that ALF residents were most likely to shop around before choosing their current ALF, followed by nursing home residents. Less than one-third of paid home care recipients interviewed more than one paid caregiver or agency. An even smaller number of people in the community who are not yet receiving paid care have shopped around, consistent with previous findings that they have not yet made arrangements for paid care.

FIGURE 22: Visited/Interviewed Alternative Providers within Current Care Setting

In the context of insurance, it may be that cost is not as important a factor as it would be if the participant did not have a LTC insurance policy. We asked if cost was an important consideration when choosing the particular home care provider, nursing home or ALF. For those not yet receiving paid care, we asked if cost was important to their decision to begin using paid care in general. Figure 23 shows that for a majority of assisted living residents cost was an important consideration in their choice of a specific facility. This may reflect the fact that there is more variation from one ALF to another -- some are very high end, providing all the amenities and others are more like nursing homes.

In contrast, only 26% of nursing home residents stated that cost was an important consideration when choosing their current nursing home. Those who have not yet decided on the type of care they are going to receive were the most likely to say cost was an important consideration, perhaps because there is still a great deal of uncertainty as to where they will receive care and they are less likely to have investigated their options. Moreover, they may not yet be certain about what their policy will cover and under what circumstances.

FIGURE 23: Cost an Important Consideration When Choosing Current Care Provider

In fact, even though only one-quarter of nursing home residents stated that cost was an important consideration, almost twice as many actually compared costs among nursing homes (see Figure 24). Over two-thirds of ALF residents stated that they had actually compared costs among providers in their area, while only about one-third of home care recipients did the same. Consistent with the fact that those not yet receiving paid care are at the beginning of their decision-making process, only 27% have gone ahead and compared costs for different providers.

FIGURE 24: Compared Costs Among Different Providers When Choosing Current Care Provider

One of the more recent developments in the LTC industry is the increased availability of and access to quality information about providers of nursing home and home health care. To date, however, there is a lack of good information about the quality of ALFs; although there are some websites that provide ALF quality information for a fee. CMS has designed a public website devoted to providing quality information about home care providers and nursing homes (see http://www.cms.gov). As part of the decision-making process, we were interested to know if claimants were utilizing this quality information so we asked if they had made an effort to obtain online or published materials regarding the quality of providers in their local area. Figure 25 shows that relatively few -- less than one-quarter -- of paid home care recipients made any effort to obtain quality information, while about half of those residing in ALFs did.

FIGURE 25: Obtained Quality Information When Choosing Current Care Provider

After an examination of cost and quality factors and their influence on choosing a particular provider, we asked insured’s what had the most influence on their decision to choose their current service provider. Figure 26 shows that reputation, location and recommendation are the most important considerations regardless of service setting.

FIGURE 26: Characteristics that had the Most Influence on Choosing Specific Care Provider

However, those using paid care at home seem to value reputation and other person’s recommendations the highest, which could explain why they were less inclined to shop around or obtain additional independent course information on quality. Those residing in facilities, both nursing homes and assisted living, indicate that where the facility was located had a strong influence on their choice of a specific provider.

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