Published Online: March 16, 2009
Jody M. Jackson, RN, BSN; Sharon J. Rolnick, PhD, MPH; Stephen E. Asche, MA; and Richard L. Heinrich, MD
Objectives: To examine attitudes, experiences, and preferences regarding advance directives (ADs) among adults of all ages.
Study Design: Subjects were surveyed regarding end-of-life (EOL) care wishes. The survey included items measuring knowledge, experiences, and attitudes regarding ADs, as well as preferences toward initiation of discussions. Methods: Subjects included a random sample of patients (age range, 20 to >80 years) from a large midwestern managed care organization stratified by age decade. Descriptive statistics were used to summarize variables, and c2 tests were performed to examine differences by age category.
Results: One hundred eighty-seven surveys were completed. The likelihood of having completed an AD increased with age (P <.001). Of those without an AD, 44% reported having talked with someone about their wishes. Many (62%) subjects thought that it was up to them to raise the topic of EOL care. However, 70% of subjects reported that they would be comfortable if their provider initiated discussion. Participants 60 years or older were more likely to report being very comfortable with their provider bringing up the subject compared with those younger than 60 years (60% vs 39%, P = .02). Few differences were found by age.
Conclusions: Room for improvement exists for increasing the number of patients who complete an AD or engage in discussion of their wishes. Ways to involve healthcare providers in the process should be explored, as it seems that patients are receptive to physician-initiated discussions of ADs.
(Am J Manag Care. 2009;15(3):177-186)
Most research on advance directives (ADs) has focused on seniors or patients with terminal illness. The findings on this topic among adults of all ages highlight the following:
- There is much room for improvement in increasing the number of patients who complete ADs or engage in discussion of wishes.
- Ways to involve providers in the process should be explored, as it seems that patients of all ages are receptive to physician-initiated discussion of ADs.
- Managed care organizations should build on their unique strengths, including multiple points for patient interaction and comprehensive documentation systems, to assist patients in advance care planning.
The media coverage surrounding the Terri Schiavo case1 highlighted the need to explore ways to encourage patients of all ages to think about and document end-of-life (EOL) care wishes. Before and after this publicized and controversial case, there was much discussion about how to increase the number of people who have an advance directive (AD), as well as how to best facilitate the process.2-5 However, much of the research on knowledge and attitudes related to ADs has been among seniors,6-17 hospitalized patients,18-25 or patients with critical or terminal illness.26-30 Although some work has been done among outpatients,9-11,13-17,31-37 information is limited about the association between age and knowledge or attitudes, as well as about patient preferences regarding initiation of EOL care discussions. We surveyed managed care organization (MCO) patients 20 years or older about knowledge, attitudes, experiences, and approaches to initiation of ADs.
Subjects included an age-stratified random sample of patients from a large MCO with approximately 700,000 members. The sample was drawn from patients who had obtained care in 1 of the plan’s 19 owned clinics and who were members as of July 2005. Subjects were identified via electronic administrative records and were then stratified by 7 age decades (20-29, 30-39, 40-49, 50-59, 60-69, 70-79, or ≥80 years). Patients were included if they had 3 years of continuous enrollment before identification, were 20 years or older, had a valid telephone number, and were not found on research exclusion lists. Targeted subjects in each age stratum were randomly selected (numbers were computer generated) from a pool of 58,569 who met eligibility criteria. The sampling plan was to stop surveying participants in a given age category when we reached 20 respondents. Although sex was not a primary variable in our analysis, approximately half of the randomized patients targeted for survey were female, and half were male. Because the survey included questions about whether the issue of ADs was raised by a healthcare provider, selection criteria included a minimum enrollment of at least 3 years. This study was approved by the MCO’s institutional review board, and participation served as a subject’s consent to use his or her data.
The survey included 54 items measuring patient knowledge of terms, experiences, and attitudes related to EOL care decision making and preferences toward initiation of advance care planning discussions (a copy of the survey is available from the corresponding author). Items considered to be possible correlates of having an AD other than age (ie, self-rated health, having experienced the prolonged death of someone close, having made EOL care decisions for someone, marital status, and education) were also included. Our selection of variables was based on an extensive literature review, followed by input from health plan leaders about factors to help the MCO encourage completion of an AD or discussion of wishes. Items from the experiences component were adapted from those used by Silveira et al31 in examining outpatients’ knowledge of their EOL options. Items measuring knowledge and preferences were created based on work done by others in these areas,11,12,30,31,33-35,37-39 as well as on experience of the study team (eg, expertise in hospice care and law). Items measuring attitudes were designed by Beck et al16 to examine attitudes and beliefs regarding life-sustaining treatment among senior MCO enrollees. The item measuring perceived health status was selected from the SF-12 Physical and Mental Health Summary Scales.40 To ensure clarity and ease of administration among respondents of all ages, we pilot tested the survey with 14 subjects (1 man and 1 woman from each age stratum).
Subjects were mailed an invitation to participate in a 1-time telephone survey regarding EOL care wishes. All telephone surveys were conducted by a single interviewer (JMJ). At least 3 attempts were made to reach potential subjects via telephone. Initially, we planned to complete all surveys via telephone; however, we found it difficult to reach subjects, particularly those in the younger age groups (20-29 and 30-39 years). Therefore, after completing half of the targeted number of surveys by telephone, the remaining surveys were solicited by mail (mailed survey, followed by a reminder postcard 2 weeks later to nonresponders). The telephone survey was conducted between September 2005 and January 2006, and mail surveys were conducted from mid-March through May 2006.
Descriptive statistics were used to summarize variables overall and by age. Because this was an exploratory examination, numerous bivariate comparisons were made. Contingency tables (7 age categories by typically 2 or 3 categories for the other variables tested) and overall χ2 tests (Pearson product moment correlation and Mantel-Haenszel test) for the entire table assessed differences in knowledge, experiences, attitudes, and preferences by age, marital status, and education. To simplify presentation, age groups were recoded as younger than 60 years and 60 years or older. Comparisons were made between experiences and the following possible correlates: self-rated health, having experienced the prolonged death of someone close, and having made EOL care decisions for someone. Comparisons between attitudes and these 3 variables were also made. To examine the effect of data collection mode, differences in experiences and knowledge were examined by whether the survey had been completed by telephone versus mail. For most items, missing values and “do not know” or “not sure” responses were removed for analysis purposes. However, because of the substantial proportion of subjects answering “do not know” for the attitude items, analysis of attitude statements retained uncertain responses. The results of all bivariate comparisons that were found to be statistically significant or suggestive are presented. In addition, unconditional logistic regression analysis was used to predict 2 experience variables (having completed an AD and having talked with someone about wishes) from age (<60 vs ≥60 years, added in the first model of the analysis), self-rated health and education (added in the second model), having experienced the prolonged death of someone close, and having made EOL care decisions for someone (added in the third model). An additional analysis included these predictors along with all 2-way interactions with age to test for possible moderation.
Two hundred three members were initially selected as participants for the telephone survey. Thirty members could not be contacted because of disconnected telephone numbers or wrong addresses, and 6 members were unable to communicate via telephone. Of the remaining 167 members, 58 could not be reached after 3 attempts. Of 109 reached, 39 refused participation, and 70 surveys were completed, for a response rate of 64%.
Two hundred eighty-seven members were targeted for the mailed survey. Three persons were unreachable by mail, and 2 were unable to participate (non–English speaking or physically unable). Of 282 deemed eligible, 117 returned the survey, for a 41% response rate (4 declined participation, 2 returned surveys with too little information to be included, and 159 never responded). Although we intended to obtain 20 subjects per age stratum, for a total of 140 completed surveys, we kept all eligible surveys (N = 187) returned for analysis. We obtained at least 20 respondents in 5 of 7 age groups. However, for those aged 20 to 29 years, we received 14 completed surveys, and we received 17 for those aged 40 to 49 years. Patients younger than 50 years were less likely to respond compared with those 50 or older (26% vs 47%, P <.001). As an indicator of the precision of our findings, proportions computed on the totalof 187 had a 95% confidence interval of 0.43 to 0.06 (for a proportion of 0.50).
Table 1 gives a breakdown of characteristics of participants overall and by age (<60 vs ≥60 years). Most participants were of white race/ethnicity. Approximately two-thirds were married, and 75% had at least some college or technical school education. Slightly more than half were female. There were slightly more men among the nonresponders compared with those who completed the survey (54% male and 46% female nonresponders vs 46% male and 54% female responders, P = .08). More than 90% reported their health as good or better. Subjects who completed the survey by telephone were more likely to report having talked with someone about their wishes (62% vs 35%, P = .005). No other differences were found related to mode of administration.
Knowledge of AD Terms and Logistics
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