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Correspondence: Address correspondence to William J. McAuley, PhD, Departments of Sociology/Anthropology and Communication, Center for Social Science Research, George Mason University, 4260 Chain Bridge Road, MSN 1H5, Fairfax, VA 22030. E-mail: wmcauley{at}gmu.edu
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Key Words: Long-term care • Health care decisions • End of life • Late-life long-term care
This research brief uses complete national nursing home Minimum Data Set (MDS) information to present current trends in the prevalence of advance directives at admission and 12 months after admission. Assessments of these recent trends bring into focus how directives are currently being used and suggest topics for additional research that will more fully address late-life long-term care (McAuley & Travis, 2003) as it occurs in nursing homes. Late-life long-term care is a term that describes two distinct populations. The first, terminal decline, consists of individuals who (a) are recipients of formal or informal long-term care, (b) can be expected to remain in some form of long-term care for the remainder of their lives, and (c) have commenced a trajectory toward end-stage disease. The second late-life long-term-care population, terminal admission, consists of individuals who begin to receive long-term care in conjunction with a terminal illness (Travis & Larsen, 2004; Travis, Moore, Larsen, & Turner, 2005).
There are many types of possible advance directives for health care in long-term care. Some researchers have focused on one directive, such as do-not-resuscitate orders (DNRs; Kellogg & Ramos, 1995; Mark, Bahr, Duthie, & Tresch, 1995), and others have considered multiple advance directives commonly found in long-term care (Cohen-Mansfield, Libin, & Lipson, 2003; Levin et al., 1999; Suri, Egleston, Brody, & Rudberg, 1999). We believe there is value in establishing two conceptually different categories of advance directives in long-term care, based on the specificity of the assessment of treatment futility and immediacy of the directive's impact on the course of treatment (McAuley & Travis, 2003). Within this framework, basic advance directives are those triggered by generalized knowledge about the likely course of the resident's condition and have no immediate impact or have limited impact on current care received by the resident. Progressive advance directives, which tend to be less common (McAuley & Travis), are based on a person-specific futility assessment and generally have a direct and/or relatively immediate impact on the resident's clinical course of care. In this investigation, we organized the advance directives available through the MDS into these two categories based on the definitions provided in the MDS assessment user's manual (Morris, Murphy, & Nonemaker, 1995, pp. 3.38–3.39).
Basic advance directives included DNRs, durable powers of attorney–health care (documentation regarding who will be legally responsible for health care decisions if the resident becomes unable to make decisions), and living wills (documentation of the resident's preferences regarding measures used to prolong life when there is a terminal diagnosis). We also included in basic directives legal guardianship, which gives the court-appointed guardian certain responsibilities for health care and other decision making for the resident.
Progressive advance directives included feeding restrictions (decisions to not be fed by artificial means if unable to be nourished by oral means), do-not-hospitalize orders (documentation that the resident is not to be hospitalized, even after developing a condition that usually requires hospitalization), medication restrictions (documentation of the desire to not receive life-sustaining medications such as antibiotics or chemotherapy), and other treatment restrictions (which might include limitations on the use of blood transfusions, tracheotomy, respiratory intubation, etc.). Each of these progressive directives can have a direct and significant impact on the resident's course of care. Previous investigations have suggested that progressive advance directives rarely occur in nursing homes apart from at least one basic directive (McAuley & Travis, 2003).
We also examined separately the person responsible for decision making for residents. Although not directly related to advance directives for health care, this information offers useful insights into who might be responsible for making the decisions leading to advance directives (Levin et al., 1999; Travis et al., 2002).
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The MDS manual (Morris et al., 1995, pp. 3.38–3.39) provides detailed information regarding how to deal with a resident's advance directives. The manual also states that "documentation must be in the record for a directive to be considered current and binding." The manual further defines each specific type of potential directive, as well as the process to be used for determining which directives, if any, are to be included for the resident. Because states differ regarding the legal status of specific directives, persons completing the MDS are advised to become familiar with relevant state laws and regulations. Although the MDS covers all major types of advance directives, we omitted those that related only to post-death issues (e.g., organ donation, autopsy request).
Our interest was in examining advance directives at admission versus those of residents at their 12-month assessments, rather than performing a direct cohort analysis of directives. Therefore, we did not directly match the 12-month MDS assessments with admissions occurring exactly one year earlier. However, we selected only those 12-month assessments in a given year for which the recorded admission date was in the earlier year (e.g., all 2003 12-month assessments that also had an admission date of 2002 recorded on the 12-month assessment form). Sometimes individuals are discharged and then re-admitted as new residents or have a full MDS assessment due to significant status changes, thus shifting their 12-month assessments (Morris et al., 1995). Therefore, some individuals receiving their 12-month assessments in 2003 would not have been admitted during 2002, and some admissions in 2002 may receive their 12-month assessments in a year other than 2003. Analysis consisted of chi-square tests of 2000 versus 2004 distributions for each type of advance directive for both admission and 12-month assessments, as well as chi-square tests for each directive comparing the distributions at admission in one year with the 12-month distributions in the following year (e.g., 2000 admission directives vs 2001 12-month directives). Because we used full national MDS data, the statistical tests are provided here to give perspective to the findings rather than to aid in making statistical inferences.
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All of the chi-square tests examining differences in the prevalence of each admission directive in one year versus the same directive in the 12-month assessments in the following year were statistically significant at the.0001 level. Individuals who remained in a facility for at least a year were significantly more likely than prior-year admissions to have had decisions made by family members, to have had some form of advance directive, and to have had each of the basic and progressive directives.
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The results demonstrate that between 2000 and 2004, there were significant increases in the percentage of nursing home admissions responsible for making their own decisions, and significant declines in those who had a family member responsible, who had legal guardians, or who had any advance directive. However, it should be noted that these changes are limited from a substantive perspective, with the exception of the large increase in the percentage of residents who were responsible for making their own decisions at admission. The increase in admissions responsible for making their own decisions and the relatively trivial decline in advance directives at admission are among the major findings of this report. Additional research is needed to determine whether the shift toward greater resident decision making, as well as the narrow declines in advance directives at admission, are the result of patient characteristics (such as an increasing prevalence of admissions who are recuperating from acute health problems not associated with terminal decline) or other factors (such as greater attention to assessing the decisional capacity of a resident to execute an advance directive [Allen et al., 2003; Mezey, Mitty, Rappaport, & Ramsey, 1997; Mezey, Teresi, Ramsey, Mitty, & Bobrowitz, 2000] or presence or type of late-life long-term care at admission [McAuley & Travis, 2003]).
The percentage of nursing home residents who had any advance directive at 12 months in 2004 (62.7%) was significantly higher than that same percentage in 2000 (59.5%), but differed very little from that (59.7%) found in 1996 in a nationally representative sample of current nursing home residents (McAuley & Travis, 2003), even though the MDS includes a greater variety of advance directives than McAuley and Travis were able to assess. This finding suggests that the substantial early gains in the percentage of longer-term residents with directives that occurred just after the promulgation of the PSDA may not have continued into recent years. If there are to be increases in the use of advance directives at admission and at later points in nursing home stays, staff and the health and social services professionals who have opportunities to meet with persons being admitted and after admission may need to be both more cognizant of individuals' late-life long-term care progression as well as more proactive regarding the provision of information, taking into account the importance of personal experiences in making end-of-life decisions (Lambert et al., 2005). Furthermore, strategic information campaigns targeted to the general public and within facilities may be beneficial (Molloy et al., 2000).
Residents at 12 months after admission were substantially more likely than those at admission to have had an advance directive. For some directives, the relative increase in prevalence was quite large. We speculate that the prevalence of directives at 12 months post-admission versus admission was due to the interplay of several factors that could differentially affect the prevalence of advance directives. For example, many people admitted to nursing homes will die before their 12-month assessments. Because prognosis is associated with decisions among elderly adults about using advance directives (Murphy et al., 1994), these individuals may be more likely to have a directive at admission, and their deaths could result in a reduction in the prevalence at 12 months. Similarly, other admissions who recuperate and are discharged to the community prior to their 12-month assessment may be less likely to have a directive at admission, and their discharges could result in an overall higher prevalence of directives at 12 months. Many individuals who remain in the facility for 12 months may experience declines in health or function and may have hospital stays that could provide another opportunity to reconsider their health care planning. It is also possible that facility staff may have more time to provide health care planning information, and residents and family members may have more time to become adjusted to the fact that the resident will not be returning to the community, resulting in new or extended discussions and decision making about advance directives.
It has been well documented that these decisions are difficult to make. Having time to develop comfort and trust with the resident's physician and the nursing home staff, and having more time to consider all late-life long-term care options are likely to be enhancements for advance-directive decision making (Travis, Loving, McClanahan, & Bernard, 2001). Clearly, there is a need for more research into the characteristics of people with and without various types of advance directives at admission to nursing homes, as well as the dynamics of change in use of directives over time. Such analyses would be very beneficial in furthering researchers' understanding of late-life long-term care in nursing homes by making it possible to identify individuals within each late-life long-term care category, to describe their characteristics at admission, and to understand the changes they undergo within long-term care facilities.
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1 Departments of Sociology/Anthropology and Communication, Center for Social Science Research, George Mason University, Fairfax, VA.
2 Department of Political Science and Public Administration, Mississippi State University, Mississippi State.
3 College of Health and Human Services, George Mason University, Fairfax, VA.
4 Department of Statistics, Texas A&M University, College Station.
Decision Editor: Linda S. Noelker, PhD
Received for publication February 21, 2005. Accepted for publication December 12, 2005.
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