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The Patient Self-Determination Act and Advance Directive Completion in Nursing Homes
Elizabeth H. Bradley, PhD;
Terrie Wetle, PhD;
Sarah M. Horwitz, PhD
Arch Fam Med. 1998;7:417-423.
ABSTRACT
Objectives To assess the prevalence of advance directives among nursing home residents before and after passage of the Patient Self-Determination Act (PSDA) and to identify factors associated with advance directive completion.
Design Prestudy and poststudy of nursing home admissions using medical record reviews and a companion cross-sectional survey of alert and oriented residents.
Setting Six nursing homes in Connecticut.
Participants Residents (N=635) from 6 randomly chosen nursing homes in the greater Hartford and greater New Haven areas.
Main Outcome Measures The existence of a documented advance directive, the timing of advance directive completion, and reported reasons for completion and noncompletion.
Results The prevalence of advance directives documentation in nursing home medical records has increased significantly since the implementation of the PSDA (4.7% [14/300] before vs 34.7% [104/300] after PSDA; odds ratio, 10.84; P<.001). The increase in documented advance directives was significant after controlling for sociodemographic and health status factors (odds ratio, 11.5; P<.001). Residents admitted to the nursing homes from hospitals (vs from their home or other source), residents with more education, and residents paying privately for nursing home care (vs using Medicare or Medicaid benefits) were more likely to have documented advance directives. Younger residents (aged <75 years) were less likely than older residents to have completed a directive. Among the 35 interviewed residents, the most common reason for completing an advance directive was experience with a prolonged death of a friend or family member. Only 1 of the interviewed residents reported that the information provided under the PSDA at the time of admission was an important factor in choosing to complete an advance directive.
Conclusions Nearly 35% of the residents in the post-PSDA cohort had an advance directive documented in the medical record. Most residents with advance directives had completed them more than 6 months before the nursing home admission. The major effect of the PSDA for nursing homes has been to enhance the documentation of existing advance directives. Little evidence exists that providing advance directive information at the time of nursing home admission has enhanced the completion of an advance directive after admission.
INTRODUCTION
DURING THE past decade, interest in encouraging advance care planning efforts by elderly persons, including the completion of advance directives such as living wills or durable powers of attorney for health care, has been increasing. Although the role of advance directives in health care decision making remains poorly understood,1-6 studies7-11 uniformly find substantial public support for their use. In addition, a broad range of professional, policy, and advocacy groups have supported the use of advance directives to enhance patient autonomy and alleviate potential problems related to treatment choices in the event of incapacitation.12-14
In December 1991, the Patient Self-Determination Act (PSDA)15 became a federal law. The intent of the PSDA was to strengthen individual control over medical treatment decision making and thus enhance patient autonomy and self-determination. The law placed several new requirements on health care organizations receiving Medicare or Medicaid payments. Two of the major requirements are that health care organizations must inform patients of their right to complete an advance directive and must document existing advance directives in patients' medical records.
Although various informational interventions aimed at promoting the completion of advance directives have been evaluated,16-21 the degree to which the implementation of the PSDA has been associated with enhanced completion of advance directives remains largely unknown. Three previous studies22-24 have addressed the effect of the PSDA on advance directive completion. These studies have provided inconsistent results, with conclusions varying from the PSDA having limited influence22 to its having a more substantial effect.23-24 Only 1 of the 3 studies was conducted in nursing homes,24 and that study focused only on rural nursing homes.
The discussion and use of advance directives is particularly important among the nursing home population because of the prevalence of cognitive impairment among this population,25-26 the frequency of death in nursing homes,27 and the history of limited autonomy in nursing home residents.28 Despite the substantial cost and effort associated with implementing the PSDA,29 knowledge concerning its efficacy in nursing homes is limited. The objective of this study is to assess the prevalence of advance directives among nursing home residents before and after passage of the PSDA and to identify factors associated with the completion of advance directives.
SUBJECTS AND METHODS
STUDY DESIGN
This research involved 2 companion studies. The first was a pre/post study using nursing home medical records of residents admitted before and after the implementation of the PSDA (n=600). The second was a cross-sectional study of alert and oriented nursing home residents (n=35) using face-to-face, semistructured interviews.
STUDY POPULATION
The target population was all persons admitted to large (at least 120 licensed chronic care beds) Connecticut nursing homes in 2 metropolitan areas between January 1 and December 31, 1990 (before PSDA), and between Janaury 1 and December 31, 1994 (after PSDA). The study period was chosen to minimize the time elapsed between pre- and post-PSDA cohorts while allowing ample time after the PSDA for the law to have been implemented routinely by organizations. The size and geographic restrictions were used to limit differing population and market conditions that might otherwise have confounded the analysis. Because most (nearly 70%) nursing home beds are in large homes, restricting the sample to only larger homes was an acceptable reduction in generalizability.
The study population for the pre/post study was obtained using 2-stage stratified random sampling in which nursing homes classified by ownership type (nonprofit vs for profit) were considered strata. In the first stage, a random sample of the nursing homes was chosen from each strata to ensure a representative sample of the nursing home industry based on ownership type. In the second stage, from each of the 6 sampled homes, 50 residents admitted during 1990 and 50 admitted during 1994 were randomly sampled. Within the 6 nursing homes, 600 residents were randomly selected. Data could not be obtained from 65 of the originally selected medical records, and these 65 were replaced with additional randomly selected records, yielding an inclusion rate of 90.2%. Of the 65 replaced, 35 were replaced because of lost medical records and 30 because of the refusal of family or resident to consent to the review of the resident's medical record. The study nursing homes were representative of the larger nursing home industry in Connecticut30 in ownership type and religious affiliation. Based on available national data,31 the study residents were representative of the national population of nursing home residents in age, sex, and physical functioning.
Although data regarding advance directives are available on the Minimum Data Set summary assessment available in all nursing home medical records, pretest reviews proved the Minimum Data Set summary assessment to be an unreliable measure of the existence of advance directives in the medical record. Therefore, all data were collected by inspecting the full medical record.
Data collected included the receipt of written information regarding advance directives from nursing home staff, the existence and type of advance directives, sociodemographic factors, and health status. The receipt of written information about advance directives was ascertained by documentation in the medical record that such information had been received. Advance directives included living wills, durable powers of attorney for health care, and health care proxy forms. Do-not-resuscitate orders and institutional forms documenting code or transfer status, frequently confused with advance directives,32-33 were not counted as advance directives because they generally represented facility efforts to document code status rather than residents' efforts to plan for future incapacity. Furthermore, in Connecticut, such documentation is not considered clear and convincing evidence of a resident's wishes, as are advance directives that are specified by statutory law. Sociodemographic factors abstracted included sex, age, race or ethnicity, marital status, religion, educational level, and payer source. Age at the time of admission was categorized as younger than 75 years, 75 to 90 years, and older than 90 years. Sex, age, education, race or ethnicity, religion, and marital status were abstracted from admission forms and social services assessments in the medical record. The payer source was recorded as the payer—Medicaid, Medicare, no insurance, or other—that was responsible for most of the nursing home admission. The admission source referred to the setting—home, hospital, another nursing home, etc—in which the resident was prior to the nursing home admission. Health status factors included cognitive status, physical functioning, and the number and type of diagnoses at the time of admission. Cognitive status was measured using the nursing assessment—alert and oriented, partly confused, or totally confused—at the time of admission. Although more reliable measures of decisional capacity have been proposed,34-37 these were infrequently used in the study nursing homes and typically unavailable in the medical record. Physical functioning was measured using the nursing assessment of Katz activities of daily living.38 Residents were categorized as dependent if they were dependent in 1 or more activity of daily living. The number and type of diagnoses at the time of admission were abstracted from the physician's history and physical examination recorded at the time of admission.
The companion study included semistructured interviews of all alert and oriented residents admitted to the 6 nursing homes from September 1 through November 31, 1995, and still living in the nursing home at the time of the interview. There were 39 eligible residents in the 6 study homes. Of these eligible residents, 4 refused to participate in the interview, yielding a sample size of 35 and a response rate of 90%.
All interviews with residents were conducted by a single health services researcher (E.H.B.). Interviews were typically 15 to 30 minutes long and were performed in the resident's room, a lounge, or a conference room at the nursing home, as preferred by the resident. Interviews were performed approximately 2 months after the resident's admission to the nursing home. In addition to demographic data, information elicited included residents' receipt of information regarding advance directives, their knowledge level concerning advance directives and their use, whether they had completed an advance directive, and the reasons for completion or noncompletion of advance directives. For residents who reported not receiving information about advance directives or who were unclear about what advance directives were, the interviewer described a set of standardized facts about advance directives and their use before ascertaining reasons for completion or noncompletion. To avoid limiting the possible responses, reasons were ascertained with an open-ended question that asked for the important reasons why the resident had either completed or not completed an advance directive. Responses were transcribed exactly as spoken by the resident. Standardized probes were used to clarify the reasoning of residents.
DATA ANALYSIS
A standard statistical package (SAS, version 6.10, SAS Institute, Cary, NC) was used for bivariate and multivariate statistical analyses. Bivariate comparisons of the cohorts admitted before and after passage of the PSDA were conducted using odds ratios (ORs) and  2 statistics. Multiple logistic regression was used to estimate the effect of the PSDA on residents' completion of advance directives, controlling for sociodemographic and health status factors. Statistical models were fit using stepwise regression techniques. The most parsimonious model was chosen in which only the statistically significant variables (P<.05) were retained. Variables that were omitted from the final model did not substantially affect the coefficients or SEs of the retained variables. Because of missing data primarily regarding educational level, the effective sample size in the logistic regression is 485. The residents for whom educational level was unknown did not vary from the other residents in any of the sociodemographic or health status measures available. In analyses not shown, a dummy variable was included to control for whether these data were missing. This did not change the results substantially.
Interview data were analyzed by reviewing the quotations from residents line by line and coding reasons as they appeared in the transcribed text. Several residents had more than 1 reason for their completion or noncompletion; all reasons were coded. For each reason, the number of residents who mentioned that item as an important reason for their completing or not completing an advance directive was calculated. Thus, data from open-ended responses were analyzed quantitatively.
RESULTS
The mean age of the 600 residents whose medical records were reviewed was 83 years, and almost 75% were women. Eighty percent had a high school or less than high school education; 60% were widowed. Only 1.3% of the residents were African American, and 0.5% were Hispanic. Residents in the cohorts admitted before and after the passage of the PSDA were similar in age, race or ethnicity, marital status, religion, educational level, cognitive status, physical functioning, and number of diagnoses. Three characteristics, however, varied significantly between the cohorts. The residents in the cohort admitted after the PSDA were more likely to be men (OR, 1.50; P=.03), to have been admitted directly from a hospital (OR, 1.98; P=.001), and to have been covered by Medicare (OR, 2.05; P=.001). In part, these data reflect broader trends within the nursing home industry, which was expanding during the study to provide after-hospital, subacute care as well as long-term care. Residents in the cohort admitted after vs those admitted before the PSDA were more likely to receive advance directive information at the time of admission. Two hundred seventy (90%) of the residents admitted after the PSDA and only 6 (2%) of the residents admitted before the PSDA received such information.
Bivariate analyses demonstrated significant increases in the prevalence of documented advance directives since the passage of the PSDA (Table 1). Nearly 35% of the cohort admitted after PSDA compared with only 4.7% of those admitted before PSDA had a documented advance directive in the nursing home medical record (OR, 10.84; P<.001). Furthermore, this increase remained significant after controlling for sociodemographic and health status factors in the multivariate analysis (OR, 12.30; 95% confidence interval [CI], 6.13-24.67; P<.001).
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Table 1. Factors Associated With Documented Advance Directives: Bivariate Analyses (N = 600)
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Logistic regression results (Table 2) identified several correlates of advance directive completion in the study sample. Residents with more than a high school education (vs high school or less) were more likely to have completed an advance directive (OR, 3.88; 95% CI, 2.14-7.05; P<.001). Older residents (75-90 years old) vs younger (<75 years old) were more likely to complete advance directives (OR, 2.79; 95% CI, 1.18-6.58; P<.02). Residents who were paying privately for care (vs using Medicare or Medicaid benefits) were also more likely to have a documented advance directive (OR, 2.53; 95% CI, 1.38-4.63; P<.003). In addition, those admitted directly from a hospital vs from home or another facility were more likely to have a documented advance directive (OR, 1.92; 95% CI, 1.05-3.53; P <.04). Other factors, including sex, race or ethnicity, religion, marital status, cognitive status, physical functioning, and number of diagnoses at the time of admission, were not significantly associated with advance directive completion. Furthermore, individual diagnoses, such as dementia, cancer, or end-stage renal disease, were not statistically associated with advance directive completion in this study population. Finally, there was no significant association between the likelihood of residents having advance directives and either individual nursing homes or their ownership type or religious affiliation.
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Table 2. Factors Associated With Advance Directive Completion: Logistic Regression (n = 485)*
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In addition to the existence of advance directives, the timing of their completion was abstracted from the documents in the medical record. Of the 104 residents in the cohort admitted after passage of the PSDA with documented advance directives, 93 (89.4%) had completed the advance directive before admission to the nursing home. Most of these had been completed more than 6 months before the admission. Thus, 207 residents were admitted without an advance directive. Of this number, 78 were alert and oriented, and 86 were partly confused. From both legal and ethical viewpoints, persons who are partly confused may still have the decisional capacity to participate in advance care planning.33, 36 From this pool of 164 admissions without previous advance directives and likely to have decisional capacity to complete advance directives, only 11 (7.5%) completed an advance directive after the admission.
The sample of 35 residents interviewed was demographically similar to the sample of 600 residents whose medical records were reviewed. The interviewed residents, however, were, on average, somewhat younger (mean age, 79.7 vs 83.0 years). Among the interviewed residents, 12 (34%) completed an advance directive. Among these 12, only 1 resident had completed his advance directive after admission. Thus, of the 24 residents admitted without advance directives, all of whom were alert and oriented, only 1 (4%) completed such a document after admission. These results are consistent with the findings from the medical record reviews.
The most common reason reported for completing an advance directive (6 [50] of the interviewed residents who completed advance directives) was previous experience with a prolonged or painful death of a friend or family member (Table 3). Four residents stated that a lawyer had recommended completing an advance directive. Of the 35 residents interviewed, only 1 (3%) reported that the information about advance directives received at the time of admission was an important factor in choosing to complete an advance directive. The most common reason for noncompletion (11 residents [48] who chose not to complete advance directives) was the resident's belief that either another person, fate, or God should make the decision about when the end of life should occur. The residents voicing this belief strongly preferred not to guide such decisions, and PSDA information received at the time of admission did not change this personal desire to delegate decision-making authority concerning care at the end of life. The second most common reason for noncompletion reported was the belief that advance directives were only for people who were about to die, and many residents (5 [22] of those not completing advance directives) did not consider themselves ready to die.
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Table 3. Residents' Reported Reasons for Advance Directive Completion and Noncompletion (n=35)
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COMMENT
Literature concerning the PSDA has described myriad problems associated with the design and implementation of the act, including added paperwork,39 noncompliance with institutional requirements,40-41 physicians' reluctance to discuss advance directives,42 and inappropriate timing of the information required to be provided at the time of admission.39 Although such shortcomings of the PSDA are well documented, the more fundamental question of whether the completion of advance directives by nursing home residents has increased since passage of the PSDA has not been adequately answered previously.
In this study, a 7-fold increase in advance directives documented in medical records was apparent between the cohort admitted before the PSDA and those admitted after the PSDA. This dramatic increase was apparent for all forms of legally binding advance directives, including instructional directives, such as living wills, and proxy directives, such as durable powers of attorney for health care. This finding is consistent with the previous empirical evidence from a study24 of rural nursing homes that demonstrated a significant increase in documented advance directives since the PSDA, estimating a prevalence of 37.9%. This previous study did not use multivariate analyses to control for factors that might confound the association between the PSDA and advance directive documentation. Multivariate analyses of the data in the present study demonstrated that, even after controlling for a number of sociodemographic and health status factors, there was a significant increase in the prevalence of documented advance directives.
The findings regarding other factors associated with advance directive completion are generally consistent with previous literature. Previous studies43 have found education and age to be associated with advance directive completion. Although payer source has not been found to be associated with the completion of advance directives, these data suggest that those who were able to pay privately for nursing home care (rather than use Medicaid or Medicare benefits) were more likely to have advance directives. If the payer source is an indicator of socioeconomic status, this finding would be consistent with previous literature43 that has suggested that persons of higher socioeconomic status are more likely to have advance directives.
The influence of the admission source on advance directive completion suggests a number of explanations. Because hospitals are required by the PSDA to provide information about advance directives, residents admitted from hospitals will have received such information twice and, therefore, may be more likely to initiate advance directives. The interview data supported this explanation to some degree. Of the 12 interviewed residents who completed advance directives, 3 described information provided at the hospital as a primary factor in their decision to complete an advance directive. An alternative explanation is that admission to a hospital often involves a sudden health event that itself might enhance the perceived importance of advance care planning for patients and their families. An unexpected finding was the lack of an observed association between the measures of health status and advance directive completion. This result may be because the health status was measured at the time of the nursing home admission, rather than when the advance directive was completed, which often was done substantially before the nursing home admission. Finally, although the influence of race or ethnicity on end-of-life choices and advance care planning is well documented,43-44 this study was unable to test the effect of this factor because of the small number of African American, Hispanic, or other minority groups in the study sample.
Important to interpreting the observed increased prevalence in documented advance directives since passage of the PSDA is the timing of advance directive completion by residents. In part, enactment of the PSDA was predicated on the premise that, if patients were given adequate information about advance directives, they would complete them. This study demonstrated the premise to be less true in the nursing home population than perhaps it is in hospital-based populations. In this study, the provision of information at the time of admission rarely resulted in the completion of advance directives by residents. An explanation may be the substantial number of residents who already had advance directives before they were admitted to the nursing home. Alternatively, this may result from the substantial incapacity of many residents admitted to nursing homes, although the data indicate that, even among alert and oriented residents, few chose to complete an advance directive after they were admitted to the nursing home.
Resident interview data identified several important barriers to completing advance directives that information alone may not address. In contrast to other studies conducted before8, 45 or just after46-47 the implementation of the PSDA, few residents reported a lack of knowledge as a barrier to completing an advance directive. In this study conducted 5 years after the PSDA, fundamental values and attitudes regarding advance care planning were reported as impediments to advance directive completion.
The 2 major barriers identified were residents' beliefs that others should make end-of-life decisions for them and a perception that advance directives were relevant only for patients who were actively dying. The finding that some persons prefer not to be involved in medical decision making regarding end-of-life care is consistent with previous research on attitudes concerning advanced care planning. This literature has demonstrated that, although most patients support the concept of advance directives,5, 9 a substantial minority prefer to have a less active role in medical decision making.47-48 The finding that many residents view advance directives as relevant only for the dying implies that inaccurate perceptions about the role and potential value of planning for future care continue to exist, despite improved awareness about advance directives.
The results of this investigation support the conclusion that the documentation of existing advance directives has increased significantly in the study nursing homes since the implementation of the PSDA. This represents an important benefit given the central role of medical records in planning and coordinating care delivered by a variety of staff in nursing homes.
At the same time, however, the provision of written information, at least at the time of nursing home admission, does not appear to be a dominant factor in most residents' choices about advance directive completion. This may be due to a number of reasons. As argued in previous studies,49-50 admission may not be the best time to consider advance directives. Residents and their families may want to avoid thinking about death at a time when they are already emotionally burdened due to the nursing home placement. Furthermore, with the quantity of information to review and sign at admission, information concerning advance directives may be overlooked by residents and their families. In some cases, the admission may not be completely voluntary, and thus, families and nursing home staff want to avoid having the resident participate too much in the admission process, including planning for future care. Finally, many residents who are predisposed to completing advance directives may typically do so before nursing home admission as part of putting their affairs in order. Thus, those admitted without such documents may have strongly held beliefs and values that impede their completion of advance directives, beliefs and values that are not changed by the provision of a packet of information on the day of admission.
Limitations of the study include its focus on 1 state and a limited number of nursing homes, and the inability to disentangle the PSDA from other events. Although there is no obvious reason why the experience in Connecticut nursing homes would be systematically different from those in other locations concerning implementation of the PSDA or advance directive completion, generalizations to other parts of the country may be inappropriate. The reported data demonstrate a significant trend in improved documentation of advance directives during the study. Although no relevant changes in statutory law occurred in Connecticut during the study, events other than the PSDA that coincided with its passage may have contributed to this observed trend.
The strengths of the study include its original data collection designed specifically to document the prevalence of advance directives in nursing home medical records, including primary data from both before and after the PSDA. Because of the use of primary rather than secondary data from existing data sets, the measurement error concerning the prevalence of advance directives was minimized. The study is also strengthened by the survey of residents, which sheds light on the perceived importance (or lack thereof) of receiving PSDA-related information when being admitted to a nursing home. Furthermore, both the data and the statistical analyses allowed for multivariate modeling that had not been conducted in previous studies of the PSDA and advance directive documentation in nursing homes.
CONCLUSIONS
Despite reported shortcomings in the design and implementation of the PSDA, this study indicates that the prevalence of documented advance directives has increased significantly since the PSDA. This increase may be due to several factors coincident with the PSDA, including media attention, legal cases involving life-sustaining treatment issues, and prominent public figures dying with living wills or other means of advance care planning. This study has also provided evidence that the current approach to informing residents, as required by the PSDA, may not be the most effective way to induce residents and their families to consider and initiate advance care planning. Although an ethical basis may exist for informing at the time of admission, this study has shown the practical effect of this informing process to be enhanced documentation of existing advance directives rather than motivating the completion of advance directives by residents after admission to nursing homes.
AUTHOR INFORMATION
Accepted for publication November 20, 1997.
This study was supported by training grant 1T32HS00052 from the Agency for Health Care Policy and Research, Rockville, Md.
Presented in part at the annual meeting of the Association for Health Services Research, Atlanta, Ga, June 10, 1996.
Dr Wetle was an employee of the US federal government when this study was conducted and prepared for publication; therefore, it is not protected by the Copyright Act, and there is no copyright of which the ownership can be transferred.
We thank Bradford H. Gray, PhD, John A. Rizzo, PhD, and Leslie Walker, MPH, for their helpful suggestions related to this project; Lynda Speicher for data collection assistance; and the participating nursing homes.
Reprints: Elizabeth H. Bradley, PhD, Department of Epidemiology and Public Health, Yale University School of Medicine, 60 College St, New Haven, CT 06520-8034 (e-mail: elizabeth.bradley{at}yale.edu).
From the Department of Epidemiology and Public Health, Yale University School of Medicine, New Haven, Conn (Drs Bradley and Horwitz), and the National Institute on Aging, National Institutes of Health, Bethesda, Md (Dr Wetle).
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