Living Will Status and Desire for Living Will Help Among Rural Alabama Veterans Ann F. Mahaney-Price, Michelle M. Hilgeman, Lori L. Davis, Sandre F. McNeal, Charles M. Conner, Rebecca S. Allen
Correspondence to Ann F. Mahaney-Price E-mail: [email protected] Ann F. Mahaney-Price Research & Development Service (Retired) Tuscaloosa VA Medical Center 3701 Loop Road East Tuscaloosa, AL 35404 Michelle M. Hilgeman Research & Development Service Tuscaloosa VA Medical Center Tuscaloosa Research & Education Advancement Corporation Center for Mental Health & Aging The University of Alabama Tuscaloosa, AL Lori L. Davis Research & Development Service Tuscaloosa VA Medical Center Tuscaloosa Research & Education Advancement Corporation Tuscaloosa, AL The University of Alabama School of Medicine Birmingham, AL
Abstract: The purpose of this secondary analysis of data from an earlier intervention study to increase Veterans Administration health care enrollment in rural Alabama veterans was to determine the veterans' living will status, desire for help completing a living will, and relationships between these and demographic, health insurance, health self-report, cumulative illness, disability, and trust characteristics. Baseline data for 201 rural Alabama veterans were extracted from the larger study. Chi-square and t tests were used to analyze group differences in categorical and continuous variables. Logistic regression models were used to determine multivariate associations of variables with living will status and desire for help. Only 13% of participants had living wills. Of those without living wills, 40% expressed a desire for help completing a living will. African Americans were less likely to have living wills than were Caucasians. Participants with more than high school education were more likely to desire help completing living wills than were those with less education. With the exception of moderate–severe respiratory illness, moderate– severe illness was not associated with having a living will. With the exception of moderate–severe vascular illness, moderate–severe illness was not associated with desire for help completing a living will. The racial and educational disparities in living will status and desire for help and the number of participants who desired help completing a living will suggests a need for action to increase advance care planning among rural veterans. ß 2014 Wiley Periodicals, Inc. Keywords: living will; advance care planning; advance directive; end of life; rural; veterans Research in Nursing & Health, 2014, 37, 379–390 Accepted 28 June 2014 DOI: 10.1002/nur.21617 Published online 23 August 2014 in Wiley Online Library (wileyonlinelibrary.com).
Sandre F. McNeal Department of Biostatistics The University of Alabama at Birmingham, Birmingham, AL Charles M. Conner Research Department Birmingham VA Medical Center Birmingham, AL Rebecca S. Allen Center for Mental Health & Aging The University of Alabama Tuscaloosa, AL
Living wills are important vehicles for guiding care decisions when an individual becomes unable to make or communicate treatment preferences (Loggers et al., 2009; Mack, Paulk, Viswanath, & Prigerson, 2010).
Despite the usefulness of the living will, most adults never complete one. Only 18–36% of US adults complete some type of advance directive, and adults with serious medical conditions do so at only a slightly higher rate C
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(US Department of Health and Human Services [HHS], 2008). Information on living will completion rates is limited, however, because most researchers report “advance directive” completion rates, which could refer to a Durable Power of Attorney for Health Care (DPAHC), a living will, or both. This secondary data analysis of data from the Alabama Veterans Rural Health Initiative study (Davis et al., 2011; Hilgeman et al., 2014) was conducted to determine living will status among rural Alabama veterans, desire for help completing a living will, and relationships between these two variables and demographic, health insurance, selfreported health and disability status, and mistrust of health care providers.
not ensure that care is consistent with the patient's wishes. Even when the surrogate has been oriented to the wishes of the patient and given an opportunity to clarify the wishes of the patient, the surrogate often does not make decisions that are consistent with the patient's wishes (Ditto et al., 2001; Ditto & Hawkins, 2005; Shalowitz, Garrett-Mayer, & Wendler, 2006). This literature has challenged the standalone DPAHC and suggests the need for thoughtful interventions that support patients' identification of end-of-life care preferences in the form of a comprehensive living will, prompting a focus in this study on living will completion in particular, rather than on advance directive completion in general.
Components of Advance Directives
Correlates of Advance Directive Completion
One of two components of an advance directive, a living will is a written document signed by an individual in advance of a situation that requires decision-making about specific medical care to be provided to that individual (Gunter-Hunt, Mahoney, & Sieger, 2002). The living will takes effect only if the individual lacks the capacity to make or communicate the decisions addressed by the directive. A living will contains specific treatment preferences, such as decisions about cardiopulmonary resuscitation, intubation, mechanical ventilation, artificial feeding and hydration, blood transfusion, intravenous antibiotics, and surgical procedures and thereby facilitates medical care that honors the patient's direct expression of preferences. Health professionals have an ethical duty to support patients' autonomy and self-determination by honoring patients' preferences in medical decisions throughout end-of-life care (Clarke et al., 2003; Emanuel, Alpert, Baldwin, & Emanuel, 2003; O'Hare, 2004; Singer, Martin, & Kelner, 1999; Steinhauser et al., 2000; Wenrich et al., 2001). Living wills, therefore, are an important area for research. The second component of an advance directive is a DPAHC, sometimes called a health care proxy, a health care surrogate, or a durable medical power of attorney (American Bar Association, 2014). To establish a DPAHC, an individual designates another person to have power of attorney authority for health care decisions when the individual is incapacitated. For each health care decision, the designated person is expected to make a substituted judgment or informed choice that reflects the choice the individual would have made if capable (Gunter-Hunt et al., 2002). Both types of advance directives empower individuals in decision-making, respect individual autonomy, preserve human dignity, and can promote reassurance about future care, but living wills are increasingly viewed as important to direct health care at the end of life. Evidence suggests serious limitations of substituted judgment, raising ethical questions about continued use of the DPAHC. The DPAHC may
Higher education levels have been associated with higher rates of completed advance directives (Freer, Eubanks, Parker, & Hershey, 2006). Higher socio-economic status also was associated with higher advance directive completion rates (HHS, 2008). Most reports have indicated that Caucasians were more likely than African Americans to complete advance directives and to specify that life-sustaining treatments be withheld or withdrawn (HHS, 2008). Caucasians also were found to have more knowledge about advance directives and to be more likely than non-Caucasians to support the use of advance directives (Kwak & Haley, 2005). Caucasian nursing home residents were more likely than African Americans to have completed advance directives, and they and their family members were more likely to have discussed treatment options with health providers. In that context, significant others of Caucasian nursing home residents were less likely than those of African American residents to consider further discussion helpful (Rich, Gruber-Baldini, Quinn, & Zimmerman, 2009). When advance directive status was evaluated before and after palliative care consultations in 400 patients, advance directive completion rates went from 26% to 60% in white patients and from 13% to 41% in African American patients. While a disparity persisted, the palliative care consultation narrowed the racial gap in completion rates to a non-significant difference (Zaide et al., 2013). These findings suggest that increasing the opportunity for discussion of advance directives with health care providers may narrow this disparity. Although little is known about rural/urban differences in advance directive completion rates, in Minimum Data Set assessments of 551,208 residents admitted to US nursing homes in 2001, residents from rural areas had much higher odds of having living wills and DPAHCs than did residents of urban and suburban areas and large towns (Buchanan, Bolin, Wang, Zhu, & Kim, 2004). Residents from the rural areas also were more likely to be older than those from the
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LIVING WILL STATUS AND DESIRE FOR LIVING WILL HELP/ MAHANEY-PRICE ET AL.
non-rural settings and to have Alzheimer's disease or mental health conditions. Studies of advance directive completion rates among veterans are also limited. In one study of 324 Nebraska veterans and non-veterans, there was no difference in completion rates (Freeman & Berger, 2009). As little is known about rural residents' and veterans' advance directive completion rates, even less is known about rural veterans. No reports were found of rural veterans' completion rate of living wills, desire for help completing a living will, or the association of demographics, health status, or healthcare provider trust to these two variables. This analysis addressed those gaps.
Methods Research Design and Data Source The present study is a descriptive correlational analysis of baseline data from a larger randomized controlled trial. The parent study was a randomized, controlled, multisite trial of different enrollment outreach interventions for Alabama veterans who had never enrolled in Veterans Administration (VA) health care services or had not used VA services in 2 years or more. Those randomized to an enhanced enrollment and engagement outreach condition had higher rates of enrollment and attendance at VA medical care appointments than did rural veterans who received only administrative outreach (Davis et al., 2011; Hilgeman et al., 2014). The present analysis used baseline demographic and health status data and two questions on living wills included in the baseline interviews: whether the participant had completed a living will and whether he or she desired help in completing one.
Sampling Plan Veterans living in rural Alabama counties in the Birmingham VA Medical Center (BVAMC), Tuscaloosa VA Medical Center (TVAMC), and Central Alabama Veterans Health Care System (CAVHCS) catchment areas and who had never enrolled in Veterans Administration (VA) health care services or had not used VA services in 2 years or more were the target population for the larger study. Rural areas within those catchment areas were selected based on the VA rural-urban classification system, which was created by VA's Planning Systems Support Group and a zip-code-level rural-urban community area designation. Recruitment spanned 45 of the 67 Alabama counties. The TVAMC and BVAMC were the study sites. Interested veterans responded to recruitment letters, announcements in newspapers, recruitment flyers, and outreach worker visits to community and veteran meeting places (e.g., barber shops, churches, offices of rural Veterans' Service Officers). Individuals under the age of 19, which is the age of consent in Alabama, and incarcerated individuals were
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excluded. No veteran was excluded based on gender, race, social class, or ethnicity.
Consent and Data Collection The study was approved by the appropriate institutional review board. Prior to enrollment, each potential participant was provided detailed information about the study and given ample time to consider the informed consent document. Participants were required to be alert and capable of understanding the consent process as well as the content of the informed consent document. When a potential participant showed questionable decision-making capacity, as evidenced by difficulty with orientation or comprehension during the informed consent process, he or she was asked to describe the study and answer brief questions to screen for capacity before completing the consent process. Research assistants were trained to assess mental status and determine decision-making capacity throughout the consent process and interviews. No veterans failed to demonstrate decision-making capacity. All veterans were given the opportunity to ask questions during the consent process. The participants gave informed consent and were interviewed at home or another convenient private location to reduce the burden of travel to a medical center.
Measures Demographics and psychosocial characteristics. Data on demographic characteristics of interest (e.g., race, education, age, marital status, income, etc.) were collected in the interview. In addition, participants were asked about their usual source for medical care, and those who did not name any usual source of care were asked their reasons for not having a usual source of medical care. One of the response options was mistrust (I do not trust healthcare providers). Cumulative Illness Rating Scale (CIRS). The CIRS is an established inventory used to estimate current multi-morbidity (Linn, Linn, & Gurel, 1968). A modified 14item version that includes an item addressing psychiatric and behavioral conditions is widely accepted (Salvi et al., 2008) and was used in the present study. For each general medical condition, illness severity is rated from 0 (no problem) to 4 (extremely severe/immediate treatment required/end organ failure/severe impairment in function). For the present study, a summary score was calculated with a possible range of 0–56, with higher scores indicating a greater illness burden. In addition, item-level analysis of four major organ systems (heart, vascular, respiratory, and lower gastrointestinal) were examined separately because heart disease, chronic lower respiratory disease, and cancer (predominantly respiratory and digestive cancers) are the most common causes of death in the United States
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(American Cancer Society, 2013; Centers for Disease Control, 2013). The CIRS has good validity and inter-rater reliability across administrative procedures and populations (Hudon, Fortin, & Vanasse, 2005; Miller et al., 1992; Mistry et al., 2004; Parmelee, Thuras, Katz, & Lawton, 1995). Psychometrics include interrater reliability between two physicians of intraclass correlation coefficient (ICC) ¼ .81 (95% confidence interval [CI] .76–.85) and intrarater reliability of ICC ¼ .83 (95% CI .76–.88) of one physician's ratings of 20 randomly-chosen participants 2 months apart (Salvi et al., 2008). Salvi and coworkers also demonstrated criterion validity of the CIRS based on significant associations between CIRS indices and clinical features including rehospitalization and mortality. When compared to other common comorbidity indices (the Charlson Comorbidity Index, the Kaplan–Feinstein Classification, and the Index of CoExistent Disease), the CIRS had higher rankings on face validity, feasibility, and generalizability (Hall, 2006).
World Health Organization Disability Assessment Schedule II (WHO-DAS II) The WHO-DAS II is a self-report measure that provides a summary of functioning and disability (none, mild, moderate, severe, extreme) that is reliable and valid across geographic regions, diagnostic groups, ages, and genders (Üstün et al., 2010). For example, van Turbergen et al. (2003) found the WHO-DAS II total score to be sensitive to physical functioning changes among patients treated for ankylosing spondylitis. In individuals in a primary care setting with back pain or depression (Chwastiak & Von Korff, 2003), the WHO-DAS II had acceptable to high internal consistency (Cronbach a of .65 for back pain and .91 for depression), evidence of convergent validity between the WHO-DAS II and the SF-36 (correlations of r ¼ .17 and r ¼ .21 with SF-36 physical function and r ¼ .51 and r ¼ .56 with SF-36 mental health), and criterion-related validity, defined as the ability of the WHO-DAS II to detect clinical changes among these two populations over time. In individuals with adult-onset hearing loss, Chisolm, Abrams, McArdle, Wilson, and Doyle (2005) also found adequate convergent validity with the SF-36 (correlations with SF-36 subscale scores between r ¼ .53 and r ¼ .62), acceptable to high internal consistency (Cronbach a for the domain scores of .68–.91), and acceptable test–retest stability over intervals of two weeks (all ICCs .80 or higher) to ten weeks (ICC range of .71–.89).
Living will status and desire for help with living will. Living will status and desire for help completing a living will were determined using two items in the baseline interview addressing. The first item was, “Have you and a witness signed a legal paper that states what medical treatments you would want and what medical treatments you would not want should you become unable to make or communicate these wishes in the future?”
Research in Nursing & Health
Response options were yes, no, or don't know. Participants who answered no or don't know completed the second of two items, “Do you want some help writing this statement that summarizes your wishes regarding medical care?” Response options were yes, no, or don't know.
Statistical Analyses Primary outcome variables of interest were having a living will (yes/no) and desiring help in writing a living will (yes/ no). Individuals who responded “don't know” or had missing data on these items were excluded from the analyses. Descriptive statistics (means, frequencies, percentiles) were calculated for baseline demographics and living will characteristics. In bivariate analyses, Chi-square and t tests were used for categorical and continuous variables, respectively. For multivariate analysis, logistic regression models were used. Cohen's d was used for effect size estimates. Statistical significance was determined at p < .05. All analyses were conducted using Statistical Analysis System version 9.2 (Cary, NC).
Results Living Will Completion Twenty-six (12.9%) of the 201 veterans who responded indicated prior completion of living wills, while the majority, 175 (87.1%), indicated that they did not have living wills. Comparisons of sociodemographic characteristics of veterans with and without living wills are shown in Table 1. Older veterans were more likely to have living wills. The mean age for veterans with living wills was 64.5 years, compared to 54.2 years for veterans without living wills, representing a moderate effect size (Cohen's d ¼ .67). Caucasians had a higher rate of living will completion than African Americans (OR 3.33, 95% CI 1.20, 9.24). Gender, marital status, income level, and education were not associated with living will completion status. Those with health insurance were seven times more likely to have a living will than were those without insurance (OR .13, CI .02, .99). Veterans with coverage through Medicare were more likely to have living wills than were those without Medicare (OR 7.54, CI 3.07, 18.56). Those with coverage through employers or unions were less likely to have living wills than were those without this coverage (OR .12, CI .02, .93). Other health insurance coverage types were not associated with living will completion status. Finally, among those without any usual source of care (n ¼ 30), endorsement of mistrust as a reason for not having a usual source of medical care was not associated with living will status. The relationship of health-related characteristics to living will status is detailed in Table 2. Progressive respiratory disease (OR 16.00, CI 1.64, 155.76) and moderate–
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Table 1. Sociodemographic Characteristics Associated With Living Will Status in Rural Alabama Veterans (N ¼ 201) Living Will Yes (n ¼ 26)
Race Caucasian African American Gender Male Female Marital status Married Divorced Separated Widow Never Education completed (years) 12 >12 Income (annual) None 20k 21–40k 41–60k 61–80k 81–100k 101–150k Insured (health) Yes No Health insurance provider Employer or union Yes No Medicare Yes No Medicaid Yes No Tricare Yes No Self-pay Yes No Do not trust health care providers Yes (I do not trust) No
No (n ¼ 175)
n
(%)
n
(%)
21 5
(17.8) (6.1)
97 77
(82.2) (93.9)
22 4
(11.8) (28.6)
165 10
(88.2) (71.4)
17 3 1 5 0
(13.4) (9.1) (11.1) (33.3) (.0)
110 30 8 10 17
(86.6) (90.9) (88.9) (66.7) (100.0)
9 17
(9.5) (16.0)
86 89
(90.5) (84.0)
1 6 10 5 0 0 1
(5.3) (14.3) (15.2) (12.2) (.0) (.0) (25.0)
18 36 56 36 17 8 3
(94.7) (85.7) (84.9) (87.8) (100.0) (100.0) (75.0)
24 1
(15.5) (2.3)
131 42
(84.5) (97.7)
1 24
(2.2) (15.7)
44 129
(97.8) (84.3)
16 9
(32.7) (6.0)
33 140
(67.4) (94.0)
1 24
(16.7) (12.5)
5 168
(83.3) (87.5)
4 21
(15.4) (12.2)
22 151
(84.6) (87.8)
10 15
(14.9) (11.5)
57 116
(85.1) (88.6)
(.0)
2 25
(100.0) (89.3)
p .02
.07
.07
.17
.44
.02
.02
Correspondence to Ann F. Mahaney-Price E-mail: [email protected] Ann F. Mahaney-Price Research & Development Service (Retired) Tuscaloosa VA Medical Center 3701 Loop Road East Tuscaloosa, AL 35404 Michelle M. Hilgeman Research & Development Service Tuscaloosa VA Medical Center Tuscaloosa Research & Education Advancement Corporation Center for Mental Health & Aging The University of Alabama Tuscaloosa, AL Lori L. Davis Research & Development Service Tuscaloosa VA Medical Center Tuscaloosa Research & Education Advancement Corporation Tuscaloosa, AL The University of Alabama School of Medicine Birmingham, AL
Abstract: The purpose of this secondary analysis of data from an earlier intervention study to increase Veterans Administration health care enrollment in rural Alabama veterans was to determine the veterans' living will status, desire for help completing a living will, and relationships between these and demographic, health insurance, health self-report, cumulative illness, disability, and trust characteristics. Baseline data for 201 rural Alabama veterans were extracted from the larger study. Chi-square and t tests were used to analyze group differences in categorical and continuous variables. Logistic regression models were used to determine multivariate associations of variables with living will status and desire for help. Only 13% of participants had living wills. Of those without living wills, 40% expressed a desire for help completing a living will. African Americans were less likely to have living wills than were Caucasians. Participants with more than high school education were more likely to desire help completing living wills than were those with less education. With the exception of moderate–severe respiratory illness, moderate– severe illness was not associated with having a living will. With the exception of moderate–severe vascular illness, moderate–severe illness was not associated with desire for help completing a living will. The racial and educational disparities in living will status and desire for help and the number of participants who desired help completing a living will suggests a need for action to increase advance care planning among rural veterans. ß 2014 Wiley Periodicals, Inc. Keywords: living will; advance care planning; advance directive; end of life; rural; veterans Research in Nursing & Health, 2014, 37, 379–390 Accepted 28 June 2014 DOI: 10.1002/nur.21617 Published online 23 August 2014 in Wiley Online Library (wileyonlinelibrary.com).
Sandre F. McNeal Department of Biostatistics The University of Alabama at Birmingham, Birmingham, AL Charles M. Conner Research Department Birmingham VA Medical Center Birmingham, AL Rebecca S. Allen Center for Mental Health & Aging The University of Alabama Tuscaloosa, AL
Living wills are important vehicles for guiding care decisions when an individual becomes unable to make or communicate treatment preferences (Loggers et al., 2009; Mack, Paulk, Viswanath, & Prigerson, 2010).
Despite the usefulness of the living will, most adults never complete one. Only 18–36% of US adults complete some type of advance directive, and adults with serious medical conditions do so at only a slightly higher rate C
2014 Wiley Periodicals, Inc.
380
RESEARCH IN NURSING & HEALTH
(US Department of Health and Human Services [HHS], 2008). Information on living will completion rates is limited, however, because most researchers report “advance directive” completion rates, which could refer to a Durable Power of Attorney for Health Care (DPAHC), a living will, or both. This secondary data analysis of data from the Alabama Veterans Rural Health Initiative study (Davis et al., 2011; Hilgeman et al., 2014) was conducted to determine living will status among rural Alabama veterans, desire for help completing a living will, and relationships between these two variables and demographic, health insurance, selfreported health and disability status, and mistrust of health care providers.
not ensure that care is consistent with the patient's wishes. Even when the surrogate has been oriented to the wishes of the patient and given an opportunity to clarify the wishes of the patient, the surrogate often does not make decisions that are consistent with the patient's wishes (Ditto et al., 2001; Ditto & Hawkins, 2005; Shalowitz, Garrett-Mayer, & Wendler, 2006). This literature has challenged the standalone DPAHC and suggests the need for thoughtful interventions that support patients' identification of end-of-life care preferences in the form of a comprehensive living will, prompting a focus in this study on living will completion in particular, rather than on advance directive completion in general.
Components of Advance Directives
Correlates of Advance Directive Completion
One of two components of an advance directive, a living will is a written document signed by an individual in advance of a situation that requires decision-making about specific medical care to be provided to that individual (Gunter-Hunt, Mahoney, & Sieger, 2002). The living will takes effect only if the individual lacks the capacity to make or communicate the decisions addressed by the directive. A living will contains specific treatment preferences, such as decisions about cardiopulmonary resuscitation, intubation, mechanical ventilation, artificial feeding and hydration, blood transfusion, intravenous antibiotics, and surgical procedures and thereby facilitates medical care that honors the patient's direct expression of preferences. Health professionals have an ethical duty to support patients' autonomy and self-determination by honoring patients' preferences in medical decisions throughout end-of-life care (Clarke et al., 2003; Emanuel, Alpert, Baldwin, & Emanuel, 2003; O'Hare, 2004; Singer, Martin, & Kelner, 1999; Steinhauser et al., 2000; Wenrich et al., 2001). Living wills, therefore, are an important area for research. The second component of an advance directive is a DPAHC, sometimes called a health care proxy, a health care surrogate, or a durable medical power of attorney (American Bar Association, 2014). To establish a DPAHC, an individual designates another person to have power of attorney authority for health care decisions when the individual is incapacitated. For each health care decision, the designated person is expected to make a substituted judgment or informed choice that reflects the choice the individual would have made if capable (Gunter-Hunt et al., 2002). Both types of advance directives empower individuals in decision-making, respect individual autonomy, preserve human dignity, and can promote reassurance about future care, but living wills are increasingly viewed as important to direct health care at the end of life. Evidence suggests serious limitations of substituted judgment, raising ethical questions about continued use of the DPAHC. The DPAHC may
Higher education levels have been associated with higher rates of completed advance directives (Freer, Eubanks, Parker, & Hershey, 2006). Higher socio-economic status also was associated with higher advance directive completion rates (HHS, 2008). Most reports have indicated that Caucasians were more likely than African Americans to complete advance directives and to specify that life-sustaining treatments be withheld or withdrawn (HHS, 2008). Caucasians also were found to have more knowledge about advance directives and to be more likely than non-Caucasians to support the use of advance directives (Kwak & Haley, 2005). Caucasian nursing home residents were more likely than African Americans to have completed advance directives, and they and their family members were more likely to have discussed treatment options with health providers. In that context, significant others of Caucasian nursing home residents were less likely than those of African American residents to consider further discussion helpful (Rich, Gruber-Baldini, Quinn, & Zimmerman, 2009). When advance directive status was evaluated before and after palliative care consultations in 400 patients, advance directive completion rates went from 26% to 60% in white patients and from 13% to 41% in African American patients. While a disparity persisted, the palliative care consultation narrowed the racial gap in completion rates to a non-significant difference (Zaide et al., 2013). These findings suggest that increasing the opportunity for discussion of advance directives with health care providers may narrow this disparity. Although little is known about rural/urban differences in advance directive completion rates, in Minimum Data Set assessments of 551,208 residents admitted to US nursing homes in 2001, residents from rural areas had much higher odds of having living wills and DPAHCs than did residents of urban and suburban areas and large towns (Buchanan, Bolin, Wang, Zhu, & Kim, 2004). Residents from the rural areas also were more likely to be older than those from the
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LIVING WILL STATUS AND DESIRE FOR LIVING WILL HELP/ MAHANEY-PRICE ET AL.
non-rural settings and to have Alzheimer's disease or mental health conditions. Studies of advance directive completion rates among veterans are also limited. In one study of 324 Nebraska veterans and non-veterans, there was no difference in completion rates (Freeman & Berger, 2009). As little is known about rural residents' and veterans' advance directive completion rates, even less is known about rural veterans. No reports were found of rural veterans' completion rate of living wills, desire for help completing a living will, or the association of demographics, health status, or healthcare provider trust to these two variables. This analysis addressed those gaps.
Methods Research Design and Data Source The present study is a descriptive correlational analysis of baseline data from a larger randomized controlled trial. The parent study was a randomized, controlled, multisite trial of different enrollment outreach interventions for Alabama veterans who had never enrolled in Veterans Administration (VA) health care services or had not used VA services in 2 years or more. Those randomized to an enhanced enrollment and engagement outreach condition had higher rates of enrollment and attendance at VA medical care appointments than did rural veterans who received only administrative outreach (Davis et al., 2011; Hilgeman et al., 2014). The present analysis used baseline demographic and health status data and two questions on living wills included in the baseline interviews: whether the participant had completed a living will and whether he or she desired help in completing one.
Sampling Plan Veterans living in rural Alabama counties in the Birmingham VA Medical Center (BVAMC), Tuscaloosa VA Medical Center (TVAMC), and Central Alabama Veterans Health Care System (CAVHCS) catchment areas and who had never enrolled in Veterans Administration (VA) health care services or had not used VA services in 2 years or more were the target population for the larger study. Rural areas within those catchment areas were selected based on the VA rural-urban classification system, which was created by VA's Planning Systems Support Group and a zip-code-level rural-urban community area designation. Recruitment spanned 45 of the 67 Alabama counties. The TVAMC and BVAMC were the study sites. Interested veterans responded to recruitment letters, announcements in newspapers, recruitment flyers, and outreach worker visits to community and veteran meeting places (e.g., barber shops, churches, offices of rural Veterans' Service Officers). Individuals under the age of 19, which is the age of consent in Alabama, and incarcerated individuals were
Research in Nursing & Health
381
excluded. No veteran was excluded based on gender, race, social class, or ethnicity.
Consent and Data Collection The study was approved by the appropriate institutional review board. Prior to enrollment, each potential participant was provided detailed information about the study and given ample time to consider the informed consent document. Participants were required to be alert and capable of understanding the consent process as well as the content of the informed consent document. When a potential participant showed questionable decision-making capacity, as evidenced by difficulty with orientation or comprehension during the informed consent process, he or she was asked to describe the study and answer brief questions to screen for capacity before completing the consent process. Research assistants were trained to assess mental status and determine decision-making capacity throughout the consent process and interviews. No veterans failed to demonstrate decision-making capacity. All veterans were given the opportunity to ask questions during the consent process. The participants gave informed consent and were interviewed at home or another convenient private location to reduce the burden of travel to a medical center.
Measures Demographics and psychosocial characteristics. Data on demographic characteristics of interest (e.g., race, education, age, marital status, income, etc.) were collected in the interview. In addition, participants were asked about their usual source for medical care, and those who did not name any usual source of care were asked their reasons for not having a usual source of medical care. One of the response options was mistrust (I do not trust healthcare providers). Cumulative Illness Rating Scale (CIRS). The CIRS is an established inventory used to estimate current multi-morbidity (Linn, Linn, & Gurel, 1968). A modified 14item version that includes an item addressing psychiatric and behavioral conditions is widely accepted (Salvi et al., 2008) and was used in the present study. For each general medical condition, illness severity is rated from 0 (no problem) to 4 (extremely severe/immediate treatment required/end organ failure/severe impairment in function). For the present study, a summary score was calculated with a possible range of 0–56, with higher scores indicating a greater illness burden. In addition, item-level analysis of four major organ systems (heart, vascular, respiratory, and lower gastrointestinal) were examined separately because heart disease, chronic lower respiratory disease, and cancer (predominantly respiratory and digestive cancers) are the most common causes of death in the United States
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RESEARCH IN NURSING & HEALTH
(American Cancer Society, 2013; Centers for Disease Control, 2013). The CIRS has good validity and inter-rater reliability across administrative procedures and populations (Hudon, Fortin, & Vanasse, 2005; Miller et al., 1992; Mistry et al., 2004; Parmelee, Thuras, Katz, & Lawton, 1995). Psychometrics include interrater reliability between two physicians of intraclass correlation coefficient (ICC) ¼ .81 (95% confidence interval [CI] .76–.85) and intrarater reliability of ICC ¼ .83 (95% CI .76–.88) of one physician's ratings of 20 randomly-chosen participants 2 months apart (Salvi et al., 2008). Salvi and coworkers also demonstrated criterion validity of the CIRS based on significant associations between CIRS indices and clinical features including rehospitalization and mortality. When compared to other common comorbidity indices (the Charlson Comorbidity Index, the Kaplan–Feinstein Classification, and the Index of CoExistent Disease), the CIRS had higher rankings on face validity, feasibility, and generalizability (Hall, 2006).
World Health Organization Disability Assessment Schedule II (WHO-DAS II) The WHO-DAS II is a self-report measure that provides a summary of functioning and disability (none, mild, moderate, severe, extreme) that is reliable and valid across geographic regions, diagnostic groups, ages, and genders (Üstün et al., 2010). For example, van Turbergen et al. (2003) found the WHO-DAS II total score to be sensitive to physical functioning changes among patients treated for ankylosing spondylitis. In individuals in a primary care setting with back pain or depression (Chwastiak & Von Korff, 2003), the WHO-DAS II had acceptable to high internal consistency (Cronbach a of .65 for back pain and .91 for depression), evidence of convergent validity between the WHO-DAS II and the SF-36 (correlations of r ¼ .17 and r ¼ .21 with SF-36 physical function and r ¼ .51 and r ¼ .56 with SF-36 mental health), and criterion-related validity, defined as the ability of the WHO-DAS II to detect clinical changes among these two populations over time. In individuals with adult-onset hearing loss, Chisolm, Abrams, McArdle, Wilson, and Doyle (2005) also found adequate convergent validity with the SF-36 (correlations with SF-36 subscale scores between r ¼ .53 and r ¼ .62), acceptable to high internal consistency (Cronbach a for the domain scores of .68–.91), and acceptable test–retest stability over intervals of two weeks (all ICCs .80 or higher) to ten weeks (ICC range of .71–.89).
Living will status and desire for help with living will. Living will status and desire for help completing a living will were determined using two items in the baseline interview addressing. The first item was, “Have you and a witness signed a legal paper that states what medical treatments you would want and what medical treatments you would not want should you become unable to make or communicate these wishes in the future?”
Research in Nursing & Health
Response options were yes, no, or don't know. Participants who answered no or don't know completed the second of two items, “Do you want some help writing this statement that summarizes your wishes regarding medical care?” Response options were yes, no, or don't know.
Statistical Analyses Primary outcome variables of interest were having a living will (yes/no) and desiring help in writing a living will (yes/ no). Individuals who responded “don't know” or had missing data on these items were excluded from the analyses. Descriptive statistics (means, frequencies, percentiles) were calculated for baseline demographics and living will characteristics. In bivariate analyses, Chi-square and t tests were used for categorical and continuous variables, respectively. For multivariate analysis, logistic regression models were used. Cohen's d was used for effect size estimates. Statistical significance was determined at p < .05. All analyses were conducted using Statistical Analysis System version 9.2 (Cary, NC).
Results Living Will Completion Twenty-six (12.9%) of the 201 veterans who responded indicated prior completion of living wills, while the majority, 175 (87.1%), indicated that they did not have living wills. Comparisons of sociodemographic characteristics of veterans with and without living wills are shown in Table 1. Older veterans were more likely to have living wills. The mean age for veterans with living wills was 64.5 years, compared to 54.2 years for veterans without living wills, representing a moderate effect size (Cohen's d ¼ .67). Caucasians had a higher rate of living will completion than African Americans (OR 3.33, 95% CI 1.20, 9.24). Gender, marital status, income level, and education were not associated with living will completion status. Those with health insurance were seven times more likely to have a living will than were those without insurance (OR .13, CI .02, .99). Veterans with coverage through Medicare were more likely to have living wills than were those without Medicare (OR 7.54, CI 3.07, 18.56). Those with coverage through employers or unions were less likely to have living wills than were those without this coverage (OR .12, CI .02, .93). Other health insurance coverage types were not associated with living will completion status. Finally, among those without any usual source of care (n ¼ 30), endorsement of mistrust as a reason for not having a usual source of medical care was not associated with living will status. The relationship of health-related characteristics to living will status is detailed in Table 2. Progressive respiratory disease (OR 16.00, CI 1.64, 155.76) and moderate–
LIVING WILL STATUS AND DESIRE FOR LIVING WILL HELP/ MAHANEY-PRICE ET AL.
383
Table 1. Sociodemographic Characteristics Associated With Living Will Status in Rural Alabama Veterans (N ¼ 201) Living Will Yes (n ¼ 26)
Race Caucasian African American Gender Male Female Marital status Married Divorced Separated Widow Never Education completed (years) 12 >12 Income (annual) None 20k 21–40k 41–60k 61–80k 81–100k 101–150k Insured (health) Yes No Health insurance provider Employer or union Yes No Medicare Yes No Medicaid Yes No Tricare Yes No Self-pay Yes No Do not trust health care providers Yes (I do not trust) No
No (n ¼ 175)
n
(%)
n
(%)
21 5
(17.8) (6.1)
97 77
(82.2) (93.9)
22 4
(11.8) (28.6)
165 10
(88.2) (71.4)
17 3 1 5 0
(13.4) (9.1) (11.1) (33.3) (.0)
110 30 8 10 17
(86.6) (90.9) (88.9) (66.7) (100.0)
9 17
(9.5) (16.0)
86 89
(90.5) (84.0)
1 6 10 5 0 0 1
(5.3) (14.3) (15.2) (12.2) (.0) (.0) (25.0)
18 36 56 36 17 8 3
(94.7) (85.7) (84.9) (87.8) (100.0) (100.0) (75.0)
24 1
(15.5) (2.3)
131 42
(84.5) (97.7)
1 24
(2.2) (15.7)
44 129
(97.8) (84.3)
16 9
(32.7) (6.0)
33 140
(67.4) (94.0)
1 24
(16.7) (12.5)
5 168
(83.3) (87.5)
4 21
(15.4) (12.2)
22 151
(84.6) (87.8)
10 15
(14.9) (11.5)
57 116
(85.1) (88.6)
(.0)
2 25
(100.0) (89.3)
p .02
.07
.07
.17
.44
.02
.02
