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The public's perspectives on advance directives: Implications for state legislative and regulatory policy
Health Policy 96 (2010) 57–63
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The public’s perspectives on advance directives: Implications for state legislative and regulatory policy Keshia M. Pollack a,∗ , Dan Morhaim b,1 , Michael A. Williams c a Department of Health Policy and Management, Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Room 557, Baltimore, MD 21205, United States b Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States c Sandra and Malcolm Berman Brain & Spine Institute, Department of Neurology, Sinai Hospital of Baltimore, Baltimore, MD, United States
a r t i c l e Keywords: Advance directives Legislative policy End-of-life care
i n f o
a b s t r a c t Objectives: Determine the prevalence of advance directives (ADs) in Maryland and identify the barriers and enablers to their adoption, in order to guide the formulation of state legislative policy. Methods: Cross-sectional survey administered over the telephone to a representative agestratified random sample of 1195 Maryland adults. Results: Approximately 34% (n = 401) of Maryland adults reported having an AD. Older adults (65+ years) were more likely than younger adults (18–64 years) to have ADs (p < 0.001); the proportional difference between those with and without ADs diminished as age increased. Two times as many Whites than Blacks reported having ADs (43–23%; p < 0.001). Of those who had an AD, the primary motivations for creating one was a personal medical condition or a diagnosis to one’s self or a family/friend (41%). Those without ADs identified lack of familiarity with them (27%), being too young or healthy to need one (14%), or uncertainty of the process for adopting one (11%) as reasons for not having one. Conclusions: Barriers to AD adoption appear amenable to policy interventions. Policies that seek to increase access and ensure ease of enrollment, combined with a targeted public health advocacy campaign, may help increase the prevalence of ADs. © 2010 Elsevier Ireland Ltd. All rights reserved.
1. Introduction Advance directives (ADs) were created to ensure autonomy of patients who eventually become unable to make decisions for themselves [1,2]. ADs are one of the important tools for end-of-life planning and include the living will and health care power of attorney [3,4]. Research has shown that the benefits of ADs include improved quality at the end-of-life, fewer burdens on family and health care
∗ Corresponding author. Tel.: +1 410 502 6272. E-mail address: [email protected] (K.M. Pollack). 1 State Legislator, Maryland House of Delegates, Annapolis, MD, United States. 0168-8510/$ – see front matter © 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.healthpol.2010.01.004
providers (HCPs), and a reduced need for life-sustaining treatment [2–4]. In the United States, because federal law generally defers to state law concerning ADs and surrogate decisionmaking [4], every state has statutory provisions for ADs. Originally enacted in 1991, the Maryland Health Care Decisions Act (as amended though 2007) not only outlines the processes for completing written ADs, but also describes key concepts and principles for HCPs and surrogate decision-makers to contemplate when making health care decisions for patients who cannot make their own decisions (http://www.marylandadvancedirectives.com/). As state legislatures and the federal government are struggling to deal with health care reform, discussions have included ideas to bolster advance care planning, includ-
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ing incentives for physicians to discuss ADs and goals of care, periodically with patients to inform them about their options. National estimates are that, at best, 30% of Americans have expressed in writing their wishes for how they want to be cared for if they become seriously ill or are unable to communicate their choices for medical care [3]. Internationally, ADs have also entered the policy debate. In 2008, the European Science Foundation organized a workshop on developing a coordinated European perspective on ADs [5]. The meeting was in part spurred by the fact that citizens from the European Union (EU) are increasingly seeking health care outside their countries of origin. Several countries in the EU lack national legislation covering ADs. Research conducted in the U.S. may yield results that inform policy decisions in other countries. In Maryland, legislation with the goal of increasing use of ADs has been frequently introduced [6]. Some bills have passed; however, many have not. Although no recent data exists on the prevalence of ADs, anecdotal reports are that the prevalence of ADs in Maryland remains low. Therefore, it seems that improved understanding of the public’s usage and perceptions of ADs could help inform the development of legislation. Moreover, it is important to identify the public’s perception of obstacles to the adoption or use of ADs. In trying to develop and respond to public policy initiatives to help with AD adoption, we were surprised at the limited amount of research from diverse populationbased samples that could help guide legislative policy. Existing research has primarily included fairly homogeneous samples, selected populations, particularly seniors, those residing in nursing home or extended care facilities, or those with terminal diseases [7–13]. Therefore, this descriptive study was initiated to understand better the public’s perception of ADs, with a focus on identifying factors that could influence the policymaking process. The primary aims of this paper are to: (1) describe the prevalence of ADs in a diverse population-based sample of Maryland adults; (2) determine perceived causes, barriers, and enablers to their adoption; and (3) identify potential policy solutions to address these barriers. Although ADs have been used for several decision-making scenarios (e.g. psychiatric-related decisions), for this study, we explored them in the context of end-of-life care. 2. Materials and methods 2.1. Study design and data collection A population-based study using a structured crosssectional survey was administered over the telephone to adult (18 years and older) Maryland residents in December 2007. For the purposes of this study, an AD was defined as a document that provides instructions for types of medical treatment that are desired. The script read to the survey respondents at the beginning of the interview informed them that they were participating in a survey about “. . . advance medical directives, ‘living wills’ or medical powerof-attorneys . . . all of these documents provide instructions for types of medical treatment that are desired and/or who can make decisions about medical care should someone
become unable to make medical decisions for him or herself.” Respondents were then asked whether they had an AD, their reasons for having or not having one, where they had received information about ADs, or (if they did not have an AD) where they would like to receive such information. Questions related to AD and end-of-life preferences were categorical and close-ended. The survey did not include specific questions about health care agents or proxies, or durable power of attorney for health care decisions. The team that developed the survey included researchers and a policymaker. This fruitful collaboration helped facilitate the collection of salient policy-relevant data. Demographic information was collected and measured on a categorical scale. Age, in years, was classified as 18–34, 35–49, 49–64, or 65 and older. Household income was defined as less than $35,000, $35,000–75,000, or over $75,000. Education was categorized as some high school, high school diploma/GED, some college, college degree, or graduate degree. Marital status was categorized as single, married, divorced, domestic partner, or widowed. Respondents chose one of the following race or ethnic categories: White, Hispanic, Black, Asian, or Other. Verbal consent was obtained from all survey respondents. The Johns Hopkins Bloomberg School of Public Health Institutional Review Board approved this research. 2.2. Sampling methodology Potential respondents were identified from a list of active registered Maryland voters, which was used to assemble the sampling frame because it created access to a diverse sample of adults. In an effort to reflect a population representative of Maryland residents, a stratified random sample was taken from four age cohorts (18–34, 35–49, 50–64, and 65 and over) that were selected based on typical “life events,” including parenthood in the thirties, increased disease prevalence around age 50, and retirement around age 65. Based on a desired precision of 95%, prevalence estimates from the published literature, and a probe sample obtained during pilot testing, it was determined a priori that 1195 adults (with specific numbers within each age group) would be needed to produce a representative sample. The initial sampling frame consisted of 26,647 adults. After the sample was stratified by age, a computer randomly selected households from the list of registered voters. Nearly 52,000 telephone dials were needed to obtain the final sample of 1195 respondents. Most dials did not reach a potential respondent (40% no answer; 27.7% answering machine; 3.8% busy; 3.3% disconnected; 1.4% wrong number; and 5.4% scheduled callbacks). When potential respondents were reached, they were asked for by name, and their name, age, and residency status were confirmed. 2.3. Data analysis Descriptive statistics were used to summarize the responses for each question. The primary outcome measure was having an AD, which was dichotomized (yes/no) and calculated across all socio-demographic variables. Data
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Table 1 Description of sample (n = 1195) by prevalence with an advance directive (AD)a . Total sample characteristics
Respondents with ADs
Respondents without ADs
N
N
%
N
%
1195
401
34
735
62
Education Some high school High school diploma or equivalent Some college College degree Graduate degree No answer
111 325 251 283 210 15
29 98 77 101 93 3
26 30 31 36 44 20
70 209 168 171 109 8
63 64 67 60 52 53
Gender Female Male
428 767
135 266
32 35
264 471
62 61
Income <$35,000 $35,000–75,000 >$75,000 No answer
350 384 281 180
94 125 108 74
27 33 38 41
234 250 158 93
67 65 56 52
Marital status Married Single Divorced Domestic partner Widowed No answer
558 303 135 4 183 12
195 65 44 2 94 1
35 21 33 50 51 8
331 230 86 2 79 7
59 76 64 50 43 58
Total
a
Tables were organized by row totals and because of missing values, some of these percentages do not sum to 100.
were analyzed in terms of percent frequency and the chisquare test of independence was conducted to identify statistically significant differences in demographic characteristics between those with and those without an AD. Comparisons by race and ethnicity were limited to Whites versus Blacks due to concerns regarding statistical power. p < 0.05 was considered statistically significant. All analyses were performed using SAS, version 9.0. 3. Results Demographic information and AD status for the entire sample is shown in Table 1. Of 1195 respondents, 401 (34%) reported they had an AD. The only variables that differed between those who did and did not have ADs were age, and race or ethnicity (p < 0.001). Younger adults were less likely than older adults to have ADs (Fig. 1), and White respon-
Fig. 1. Distribution of ADs by age category (years).
dents were nearly twice as likely as Blacks to report having an AD (Fig. 2). 3.1. Preferences, motivating factors, and barriers to having an advance directive While only 34% of all respondents had an AD, 61% indicated they have preferences about medical care in the event that they are unable to make such decisions. Of these, 83% said it was very important that their preferences be carried out. In addition, nearly half the respondents (47%) reported having a last will and testament. Of the 401 respondents with ADs, 41% stated that their own medical condition or diagnosis, or that of a family member or friend, prompted them to create their AD (Table 2). Other reasons for creating an AD were ensuring that wishes for end-of-life care are carried out (9%), good idea or right thing to do (8%), and recent publicity about a high profile case (7%). Among the 735 respondents who did not have an AD, the primary reason was that they were not familiar with them (27%) (Table 2). Other reasons were that they were too young or healthy to need an AD (14%); it took too much time, effort, or money to complete one (11%); or they were unsure of how to make appropriate health care decisions (10%). Most (41%) of the 401 respondents who had an AD obtained them from a law firm, whereas 22% obtained them from a hospital, 12% from their physician, and 7% from the Internet (data not shown). When respondents who did not have an AD (n = 735) were asked where they would prefer to receive information about ADs if they were to create one in the future (Table 2), the most common responses were: from a physi-
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Fig. 2. Distribution of ADs by race/ethnicity. Table 2 Motivations related to current or future creation of an AD. Response categories
N
%
Subjects with an AD (n = 401) Reasons for creating an AD Medical condition/diagnosis (self) Medical condition/diagnosis (family member or friend) Ensure my wishes for end-of-life care are carried out Good idea/right thing to do Recent publicity Did not/would not specify Recommended by doctor/family/friend/lawyer Not sure/did not know Military Religious reasons Other
97 69 36 31 29 19 14 14 6 5 81
24 17 9 8 7 5 3 3 1 1 20
Subjects without an AD (n = 794) Reasons for not having an AD Not familiar with them Too young or healthy to need one Too much time/effort/money required to complete one Unsure how to make appropriate health care decisions Have not gotten around to it Have not thought about it/do not know Do not know how to obtain paperwork/instructions No reason Do not think it is important Family member will take care of it Other
217 108 84 82 71 55 51 21 17 12 76
27 14 11 10 9 7 6 3 2 2 10
Subjects without an AD (n = 665) Places they would want to receive information on ADs Doctor’s office/health clinic Hospital or other health care facility Lawyer Internet Church/religious organization Community center/organization Other
263 88 89 85 25 10 105
40 13 13 13 4 2 16
cian or other HCP (40%), hospital/health care facility (13%), a lawyer (13%), or the Internet (13%). Not surprisingly, adults 65 years or older (4.2%), as compared to adults younger than 65 years old (14.5%), were less likely to want information from the Internet (p < 0.01). 4. Discussion Our study makes several contributions to the existing knowledge of use of ADs by the public. We found that
34% of adults in Maryland reported having an AD, which is higher than recent prevalence estimates of 18-30% of Americans among healthy and ill populations [1,3,14–16] While on the one hand, the high rate in Maryland is a credit to the state statutes and implementation by HCPs and patients and families, two-thirds of Maryland adults still report they do not have an AD, which means that significant barriers and opportunities for improvement exist.
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Our results show that respondents aged 18–24 years (15%) were three times less likely than those over age 65 (45%) to report having an AD. In addition, 14% of all respondents felt they were too healthy or too young to have an AD. While it is true that the death rate from young adults is much lower than it is for older adults, the leading causes of death for younger people are sudden and unexpected. Unintentional injuries are the leading cause of death for Americans ages 1–44 years, scenarios in which an AD or health care proxy would be especially helpful [17]. Moreover, the three most well known right-to-die cases in the U.S. (Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo) all involved individuals under 30 years of age. Despite the fact that some adults feel that they are too young to have an AD, it is important to increase the adoption of ADs among young adults. One strategy would be to encourage them first to identify their health care agents, which may eventually lead them to initiate discussions about their preferences and goals of care, which may be followed by an AD. In Maryland, designating a health care agent is fairly easy to do (personal communication, Jack Schwartz, July 23, 2008). The Maryland statute, which closely follows the model Uniform Health-Care Decisions Act adopted by the National Conference of Commissioners on Uniform State Laws in 1993 (http://www.law.upenn.edu/bll/archives/ulc/fnact99/ 1990s/uhcda93.htm), defines health care agent as an adult appointed by the patient in an advance directive to make health care decisions for the patient, which is distinguished from a surrogate, who is a person appointed by virtue of the statute to make decisions for the patient. The health care agent can also be designated orally to an attending physician or nurse practitioner and one witness. The Maryland statute designates an order for identifying a surrogate based on the surrogate’s relationship to the patient, which means it is possible that the surrogate may not be the person whom the patient would have chosen, or who best knows the patient’s wishes. Further, in Maryland, as in many other states, the scope of decisions that can be made by a surrogate is restricted in comparison to the scope of decisions that can be made by a health care agent. Our population-based data also show that 40% of Whites compared to 22% of Blacks report having an AD, which is consistent with some studies that have shown significant racial differences in ADs. Overall, however, the results of prior research on the influence of race and ethnicity on ADs are mixed. Some studies show that racial and ethnic minorities are less likely than Whites to have ADs [1–3,18,19] and some show no difference [20,21]. Regardless, there are still real differences that warrant consideration for efforts to improve ADs at the population level. Black–White differences in the rates of ADs are attributable to several factors including cultural differences in family-centered decision-making, distrust of the health care system, poor communication between health care professionals and patients, and a general lack of knowledge by Blacks regarding ADs [3,22,23]. While Blacks may be less likely to have an AD, because of the family-centeredness of end-of-life decision-making they may be more likely to have des-
61
ignated a health care agent or proxy [24]. While we were unable to explore this distinction in our study, prior research suggests that Blacks are more likely to prefer the involvement of multiple family members, friends, and spiritual leaders in meetings to make health care decisions [25]. This preference raises the question of whether the prevailing statutory model of a single person as proxy is appropriate in a multicultural society, and might be one reason for racial differences in AD rates [26,27]. Research on different proxy models is warranted. In the meantime, it seems likely that strategies to address end-of-life decisions in racially and culturally diverse populations should incorporate culturally tailored solutions. Policy development should recognize the variety of values and preferences found among diverse racial or ethnic groups. Efforts to assure reciprocity of ADs with novel proxy models will be important to assure that ADs executed in one jurisdiction will be honored in other jurisdictions for patients who may be travelling to another state or country to receive health care. This study also highlighted several modifiable barriers to AD completion. The leading reasons given for not having an AD were unfamiliarity with them and the belief that it takes too much time, effort, or money to complete them. Considering the State of Maryland recognizes both written and oral ADs, informational campaigns that inform the public and health care professionals of the option of oral ADs may be helpful [28]. Most respondents who did not have an AD stated that they would prefer to receive information from a physician or other HCP. However, younger adults were more likely than older adults to want information from the Internet. These findings suggest the need to support various communications information strategies, ranging from “ask your doctor” to Internet-based information sites. Provided that legislative efforts create more options for creating ADs, public health campaigns to educate the public will likely increase the use of ADs. Public service announcements given by young adult celebrities or athletes, or education in high school for students approaching the age of majority could also help garner increased awareness and use of ADs. The United States Patient Self-Determination Act of 1990, probably the largest public effort for advocating ADs in the U.S., requires all hospitals to provide adults at the time of admission information about their rights regarding ADs [29]. While laudable, this process does little to promote advance care planning, which ideally is the result of a conversation between patients and their physicians prior to hospitalization. Considering that only 12% of respondents in our study who had an AD obtained information from their physician, it seems safe to conclude that physicians and their patients are not having these discussions, or at least not to the extent they should be. Clinicians’ reluctance to discuss these matters has been identified as a barrier for advance care planning in the outpatient setting [30]. Yet more than 61% of the adults in our sample said they had preferences for end-of-life care and most wanted to discuss these issues with their physicians. Considering this, it would seem that a significant majority of the population would support legislative or regulatory
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incentives for physicians to discuss advance care planning with their patients at regular intervals. It is well documented that higher intensity, direct interventions result in improved AD completion rates across settings [31–33]. Thus, strategies such as ensuring that ADs are part of a total medical plan with includes a health care agent or proxy, could be beneficial. Finally, policymakers should consider incentives and programs for patients, health plans, HMOs, health care institutions, and health care professionals that could increase communication with patients about ADs. Information about ADs could easily be included in health insurance information packages. These incentives will need to be appropriate and sensitive to the complex issues involved. Despite the significant findings yielded by this research, our study has limitations and the findings should be interpreted prudently. Our data were based a sample drawn from the civilian, non-institutionalized adult population in Maryland living in households with access to a residential telephone. Thus, as with other telephone surveys, individuals without residential telephones and those unable to answer the telephone are excluded from the study. In addition, respondents were limited to registered voters who spoke English. Therefore, our results may not be generalizable to other population segments. The sampling methodology may have produced a biased sampled. Nearly 52,000 dials were made, of which there was no answer for half, and another 14,000 only reached an answering machine. This not a surprise because the proliferation of call-screening devices and cellular telephones contributes to high non-response rates [34,35]. We were unable to obtain information on eligibility of the non-responders. Thus to the extent that the non-responders’ decision not to participate was associated with feelings about ADs, the representativeness of our findings may be limited. Our study did not examine the actual existence of ADs—only the respondents’ report that they did or did not have them. Therefore, the results may be subject to recall bias, response bias, or incorrect responses from respondents who may not have understood the concept of an AD despite being informed about the nature and purpose of ADs at the beginning of the telephone interview. In addition, participants were not asked to describe the specific type of AD that they had; thus, to the extent that the type of AD influenced perspective on ADs and disparities supported by the data, these results may have also been limited. This study was limited to persons in Maryland, but because Maryland’s demographics are fairly similar to the U.S. population as a whole [36], we believe the results have relevance for the broader U.S. population. For instance, key demographics, such as the percent of persons 65 years and older, percent females, and percent of persons who graduated from high school, are very similar between Maryland and the entire U.S., thereby supporting the generalizability of these findings. Finally, this descriptive study was designed primarily to inform policy development, thus we did not strive to test study hypotheses. Our populationbased study helped to illuminate factors germane to AD policy formulation and could be relevant to other states and nations.
5. Conclusions Our study shows that sixteen years since the adoption of the Maryland Health Care Decisions Act, approximately one-third of adults in Maryland report having an AD, younger adults and Blacks are significantly less likely to have ADs, and approximately 61% of the population has preferences for end-of-life care. The formulation and implementation of public health policies to increase the use of ADs can be guided by responding to the preferences and barriers identified by the public. We advocate for more diverse approaches that are adaptable and value-congruent for patients and families of different ages, race, and ethnicity that are promoted through legislative and regulatory policy, and supported by advocacy and educational campaigns, community support systems, and efforts to increase discussions between physicians and their patients on these matters. Acknowledgments This research was supported by a grant from CareFirst BlueCross BlueShield. We thank Mr. William F. Casey, Vice President Government Affairs for CareFirst BlueCross BlueShield for his support of this work. We would also like to thank former Maryland Assistant Attorney General Jack Schwartz for his insightful comments on this research and review of this manuscript. We would also like to thank Kathleen Schneider, Rebecca Skiles, and Tova Reichel from Navigant Consulting on their help with this project. References [1] Brown BA. The history of advance directives. A literature review. Journal of Gerontological Nursing 2003;29(9):4–14. [2] Emanuel LL. Advance directives. Annual Review of Medicine 2008;59:187–98. [3] Wilkinson A, Wenger N, Shugarman LR. RAND Corporation, Prepared for the Office of Disability, Aging and Long-Term Care Policy, U.S. Department of Health and Human Services. Literature Review of Advance Directives; 2007. [4] Colello KJ, Mulvey J, Sarata AK, Williams ED, Thomas KR. End-oflife care: services, costs, ethics, and quality of care. Congressional Research Service. Report 7-5700; February 23, 2009. [5] European Science Foundation. Europe seeks consensus over living wills; October 31, 2008. Available at http://www.esf.org/researchareas/medical-sciences/news/ext-news-singleview/article/europeseeks-consensus-over-living-wills-514.html [accessed December 3, 2009]. [6] Department of Legislative Services, Library and Information Services, Maryland General Assembly (http://dls.state.md.us/ side pgs/library info/library info.html). Annapolis, MD. [7] Burg MA, McCarty C, Allen WJ, Denslow D. Advance directives: population prevalence and demand in Florida. Journal of the Florida Medical Association 1995;82:811–4. [8] LifeCircle South Dakota. Sanford School of Medicine at the University of South Dakota. South Dakota’s dying to know: end-of-life research; 2004–2007, 2007. [9] Braun KL, Onaka AT, Horiuchi BY. End-of-life preferences in Hawaii. Hawaii Medical Journal 2000;59:440–6. [10] Matzo M, Hijjazi K, Outwater M. Older Oklahomans’ knowledge, attitudes, and behaviors related to advance directives. Journal of Gerontological Nursing 2008;34:21–6. [11] Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest 2005;127(6):2188–96. [12] Morrison RS, Meier DE. High rates of advance care planning in New York City’s elderly population. Archives of Internal Medicine 2006;164:2421–6.
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[25] Shrank WH, Kutner JS, Richardon T, Mularski RA, Fischer S, KagawaSinger M. Focus group findings about the influence of culture on communication preferences in end-of-life care. Journal of General Internal Medicine 2005;20:703–9. [26] Berger JT, DeRenzo EG, Schwartz J. Surrogate decision making: reconciling ethical theory and clinical practice. Annals of Internal Medicine 2008;149:48–53. [27] Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of the American Geriatric Society 2008;56:1953–8. [28] Information from the Maryland Attorney General on Health Policy in the state accessed at http://www.oag.state.md.us/ Healthpol/AdvanceDirectives.htm on April 10, 2008. [29] Yates JL, Glick HR. The failed Patient Self-Determination Act and policy alternatives for the right to die. Journal of Aging and Social Policy 1997;9(4):29–50. [30] Curtis JR, Patrick DL, Caldwell ES, Collier AC. Why don’t patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Archives of Internal Medicine 2000;160(11):1690–6. [31] Ramsaroop SD, Reid MC, Adelman RD. Completing an advance directive in the primary care setting: what do we need for success? Journal of the American Geriatrics Society 2007;55(February (2)):277–83. [32] Patel RV, Sinuff T, Cook DJ. Influencing advance directive completion rates in non-terminally ill patients: a systematic review. Journal of Critical Care 2004;19(March (1)):1–9. [33] Bravo G, Dubois MF, Wagneur B. Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Social Science & Medicine 2008;67(October (7)):1122–32 [Epub]. [34] Groves RM, Cooper MP. Nonresponse in household survey interviews. New York: Wiley; 1998. [35] American Association for Public Opinion Research. Standard definitions: final dispositions of case codes and outcome rates for surveys. 4th edition Lenexa, KS: AAPOR; 2006. [36] Census US. Maryland QuickFacts; 2006. http://quickfacts.census.gov/ qfd/states/24000.html [accessed June 1, 2008].
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The public’s perspectives on advance directives: Implications for state legislative and regulatory policy Keshia M. Pollack a,∗ , Dan Morhaim b,1 , Michael A. Williams c a Department of Health Policy and Management, Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Room 557, Baltimore, MD 21205, United States b Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States c Sandra and Malcolm Berman Brain & Spine Institute, Department of Neurology, Sinai Hospital of Baltimore, Baltimore, MD, United States
a r t i c l e Keywords: Advance directives Legislative policy End-of-life care
i n f o
a b s t r a c t Objectives: Determine the prevalence of advance directives (ADs) in Maryland and identify the barriers and enablers to their adoption, in order to guide the formulation of state legislative policy. Methods: Cross-sectional survey administered over the telephone to a representative agestratified random sample of 1195 Maryland adults. Results: Approximately 34% (n = 401) of Maryland adults reported having an AD. Older adults (65+ years) were more likely than younger adults (18–64 years) to have ADs (p < 0.001); the proportional difference between those with and without ADs diminished as age increased. Two times as many Whites than Blacks reported having ADs (43–23%; p < 0.001). Of those who had an AD, the primary motivations for creating one was a personal medical condition or a diagnosis to one’s self or a family/friend (41%). Those without ADs identified lack of familiarity with them (27%), being too young or healthy to need one (14%), or uncertainty of the process for adopting one (11%) as reasons for not having one. Conclusions: Barriers to AD adoption appear amenable to policy interventions. Policies that seek to increase access and ensure ease of enrollment, combined with a targeted public health advocacy campaign, may help increase the prevalence of ADs. © 2010 Elsevier Ireland Ltd. All rights reserved.
1. Introduction Advance directives (ADs) were created to ensure autonomy of patients who eventually become unable to make decisions for themselves [1,2]. ADs are one of the important tools for end-of-life planning and include the living will and health care power of attorney [3,4]. Research has shown that the benefits of ADs include improved quality at the end-of-life, fewer burdens on family and health care
∗ Corresponding author. Tel.: +1 410 502 6272. E-mail address: [email protected] (K.M. Pollack). 1 State Legislator, Maryland House of Delegates, Annapolis, MD, United States. 0168-8510/$ – see front matter © 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.healthpol.2010.01.004
providers (HCPs), and a reduced need for life-sustaining treatment [2–4]. In the United States, because federal law generally defers to state law concerning ADs and surrogate decisionmaking [4], every state has statutory provisions for ADs. Originally enacted in 1991, the Maryland Health Care Decisions Act (as amended though 2007) not only outlines the processes for completing written ADs, but also describes key concepts and principles for HCPs and surrogate decision-makers to contemplate when making health care decisions for patients who cannot make their own decisions (http://www.marylandadvancedirectives.com/). As state legislatures and the federal government are struggling to deal with health care reform, discussions have included ideas to bolster advance care planning, includ-
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ing incentives for physicians to discuss ADs and goals of care, periodically with patients to inform them about their options. National estimates are that, at best, 30% of Americans have expressed in writing their wishes for how they want to be cared for if they become seriously ill or are unable to communicate their choices for medical care [3]. Internationally, ADs have also entered the policy debate. In 2008, the European Science Foundation organized a workshop on developing a coordinated European perspective on ADs [5]. The meeting was in part spurred by the fact that citizens from the European Union (EU) are increasingly seeking health care outside their countries of origin. Several countries in the EU lack national legislation covering ADs. Research conducted in the U.S. may yield results that inform policy decisions in other countries. In Maryland, legislation with the goal of increasing use of ADs has been frequently introduced [6]. Some bills have passed; however, many have not. Although no recent data exists on the prevalence of ADs, anecdotal reports are that the prevalence of ADs in Maryland remains low. Therefore, it seems that improved understanding of the public’s usage and perceptions of ADs could help inform the development of legislation. Moreover, it is important to identify the public’s perception of obstacles to the adoption or use of ADs. In trying to develop and respond to public policy initiatives to help with AD adoption, we were surprised at the limited amount of research from diverse populationbased samples that could help guide legislative policy. Existing research has primarily included fairly homogeneous samples, selected populations, particularly seniors, those residing in nursing home or extended care facilities, or those with terminal diseases [7–13]. Therefore, this descriptive study was initiated to understand better the public’s perception of ADs, with a focus on identifying factors that could influence the policymaking process. The primary aims of this paper are to: (1) describe the prevalence of ADs in a diverse population-based sample of Maryland adults; (2) determine perceived causes, barriers, and enablers to their adoption; and (3) identify potential policy solutions to address these barriers. Although ADs have been used for several decision-making scenarios (e.g. psychiatric-related decisions), for this study, we explored them in the context of end-of-life care. 2. Materials and methods 2.1. Study design and data collection A population-based study using a structured crosssectional survey was administered over the telephone to adult (18 years and older) Maryland residents in December 2007. For the purposes of this study, an AD was defined as a document that provides instructions for types of medical treatment that are desired. The script read to the survey respondents at the beginning of the interview informed them that they were participating in a survey about “. . . advance medical directives, ‘living wills’ or medical powerof-attorneys . . . all of these documents provide instructions for types of medical treatment that are desired and/or who can make decisions about medical care should someone
become unable to make medical decisions for him or herself.” Respondents were then asked whether they had an AD, their reasons for having or not having one, where they had received information about ADs, or (if they did not have an AD) where they would like to receive such information. Questions related to AD and end-of-life preferences were categorical and close-ended. The survey did not include specific questions about health care agents or proxies, or durable power of attorney for health care decisions. The team that developed the survey included researchers and a policymaker. This fruitful collaboration helped facilitate the collection of salient policy-relevant data. Demographic information was collected and measured on a categorical scale. Age, in years, was classified as 18–34, 35–49, 49–64, or 65 and older. Household income was defined as less than $35,000, $35,000–75,000, or over $75,000. Education was categorized as some high school, high school diploma/GED, some college, college degree, or graduate degree. Marital status was categorized as single, married, divorced, domestic partner, or widowed. Respondents chose one of the following race or ethnic categories: White, Hispanic, Black, Asian, or Other. Verbal consent was obtained from all survey respondents. The Johns Hopkins Bloomberg School of Public Health Institutional Review Board approved this research. 2.2. Sampling methodology Potential respondents were identified from a list of active registered Maryland voters, which was used to assemble the sampling frame because it created access to a diverse sample of adults. In an effort to reflect a population representative of Maryland residents, a stratified random sample was taken from four age cohorts (18–34, 35–49, 50–64, and 65 and over) that were selected based on typical “life events,” including parenthood in the thirties, increased disease prevalence around age 50, and retirement around age 65. Based on a desired precision of 95%, prevalence estimates from the published literature, and a probe sample obtained during pilot testing, it was determined a priori that 1195 adults (with specific numbers within each age group) would be needed to produce a representative sample. The initial sampling frame consisted of 26,647 adults. After the sample was stratified by age, a computer randomly selected households from the list of registered voters. Nearly 52,000 telephone dials were needed to obtain the final sample of 1195 respondents. Most dials did not reach a potential respondent (40% no answer; 27.7% answering machine; 3.8% busy; 3.3% disconnected; 1.4% wrong number; and 5.4% scheduled callbacks). When potential respondents were reached, they were asked for by name, and their name, age, and residency status were confirmed. 2.3. Data analysis Descriptive statistics were used to summarize the responses for each question. The primary outcome measure was having an AD, which was dichotomized (yes/no) and calculated across all socio-demographic variables. Data
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Table 1 Description of sample (n = 1195) by prevalence with an advance directive (AD)a . Total sample characteristics
Respondents with ADs
Respondents without ADs
N
N
%
N
%
1195
401
34
735
62
Education Some high school High school diploma or equivalent Some college College degree Graduate degree No answer
111 325 251 283 210 15
29 98 77 101 93 3
26 30 31 36 44 20
70 209 168 171 109 8
63 64 67 60 52 53
Gender Female Male
428 767
135 266
32 35
264 471
62 61
Income <$35,000 $35,000–75,000 >$75,000 No answer
350 384 281 180
94 125 108 74
27 33 38 41
234 250 158 93
67 65 56 52
Marital status Married Single Divorced Domestic partner Widowed No answer
558 303 135 4 183 12
195 65 44 2 94 1
35 21 33 50 51 8
331 230 86 2 79 7
59 76 64 50 43 58
Total
a
Tables were organized by row totals and because of missing values, some of these percentages do not sum to 100.
were analyzed in terms of percent frequency and the chisquare test of independence was conducted to identify statistically significant differences in demographic characteristics between those with and those without an AD. Comparisons by race and ethnicity were limited to Whites versus Blacks due to concerns regarding statistical power. p < 0.05 was considered statistically significant. All analyses were performed using SAS, version 9.0. 3. Results Demographic information and AD status for the entire sample is shown in Table 1. Of 1195 respondents, 401 (34%) reported they had an AD. The only variables that differed between those who did and did not have ADs were age, and race or ethnicity (p < 0.001). Younger adults were less likely than older adults to have ADs (Fig. 1), and White respon-
Fig. 1. Distribution of ADs by age category (years).
dents were nearly twice as likely as Blacks to report having an AD (Fig. 2). 3.1. Preferences, motivating factors, and barriers to having an advance directive While only 34% of all respondents had an AD, 61% indicated they have preferences about medical care in the event that they are unable to make such decisions. Of these, 83% said it was very important that their preferences be carried out. In addition, nearly half the respondents (47%) reported having a last will and testament. Of the 401 respondents with ADs, 41% stated that their own medical condition or diagnosis, or that of a family member or friend, prompted them to create their AD (Table 2). Other reasons for creating an AD were ensuring that wishes for end-of-life care are carried out (9%), good idea or right thing to do (8%), and recent publicity about a high profile case (7%). Among the 735 respondents who did not have an AD, the primary reason was that they were not familiar with them (27%) (Table 2). Other reasons were that they were too young or healthy to need an AD (14%); it took too much time, effort, or money to complete one (11%); or they were unsure of how to make appropriate health care decisions (10%). Most (41%) of the 401 respondents who had an AD obtained them from a law firm, whereas 22% obtained them from a hospital, 12% from their physician, and 7% from the Internet (data not shown). When respondents who did not have an AD (n = 735) were asked where they would prefer to receive information about ADs if they were to create one in the future (Table 2), the most common responses were: from a physi-
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Fig. 2. Distribution of ADs by race/ethnicity. Table 2 Motivations related to current or future creation of an AD. Response categories
N
%
Subjects with an AD (n = 401) Reasons for creating an AD Medical condition/diagnosis (self) Medical condition/diagnosis (family member or friend) Ensure my wishes for end-of-life care are carried out Good idea/right thing to do Recent publicity Did not/would not specify Recommended by doctor/family/friend/lawyer Not sure/did not know Military Religious reasons Other
97 69 36 31 29 19 14 14 6 5 81
24 17 9 8 7 5 3 3 1 1 20
Subjects without an AD (n = 794) Reasons for not having an AD Not familiar with them Too young or healthy to need one Too much time/effort/money required to complete one Unsure how to make appropriate health care decisions Have not gotten around to it Have not thought about it/do not know Do not know how to obtain paperwork/instructions No reason Do not think it is important Family member will take care of it Other
217 108 84 82 71 55 51 21 17 12 76
27 14 11 10 9 7 6 3 2 2 10
Subjects without an AD (n = 665) Places they would want to receive information on ADs Doctor’s office/health clinic Hospital or other health care facility Lawyer Internet Church/religious organization Community center/organization Other
263 88 89 85 25 10 105
40 13 13 13 4 2 16
cian or other HCP (40%), hospital/health care facility (13%), a lawyer (13%), or the Internet (13%). Not surprisingly, adults 65 years or older (4.2%), as compared to adults younger than 65 years old (14.5%), were less likely to want information from the Internet (p < 0.01). 4. Discussion Our study makes several contributions to the existing knowledge of use of ADs by the public. We found that
34% of adults in Maryland reported having an AD, which is higher than recent prevalence estimates of 18-30% of Americans among healthy and ill populations [1,3,14–16] While on the one hand, the high rate in Maryland is a credit to the state statutes and implementation by HCPs and patients and families, two-thirds of Maryland adults still report they do not have an AD, which means that significant barriers and opportunities for improvement exist.
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Our results show that respondents aged 18–24 years (15%) were three times less likely than those over age 65 (45%) to report having an AD. In addition, 14% of all respondents felt they were too healthy or too young to have an AD. While it is true that the death rate from young adults is much lower than it is for older adults, the leading causes of death for younger people are sudden and unexpected. Unintentional injuries are the leading cause of death for Americans ages 1–44 years, scenarios in which an AD or health care proxy would be especially helpful [17]. Moreover, the three most well known right-to-die cases in the U.S. (Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo) all involved individuals under 30 years of age. Despite the fact that some adults feel that they are too young to have an AD, it is important to increase the adoption of ADs among young adults. One strategy would be to encourage them first to identify their health care agents, which may eventually lead them to initiate discussions about their preferences and goals of care, which may be followed by an AD. In Maryland, designating a health care agent is fairly easy to do (personal communication, Jack Schwartz, July 23, 2008). The Maryland statute, which closely follows the model Uniform Health-Care Decisions Act adopted by the National Conference of Commissioners on Uniform State Laws in 1993 (http://www.law.upenn.edu/bll/archives/ulc/fnact99/ 1990s/uhcda93.htm), defines health care agent as an adult appointed by the patient in an advance directive to make health care decisions for the patient, which is distinguished from a surrogate, who is a person appointed by virtue of the statute to make decisions for the patient. The health care agent can also be designated orally to an attending physician or nurse practitioner and one witness. The Maryland statute designates an order for identifying a surrogate based on the surrogate’s relationship to the patient, which means it is possible that the surrogate may not be the person whom the patient would have chosen, or who best knows the patient’s wishes. Further, in Maryland, as in many other states, the scope of decisions that can be made by a surrogate is restricted in comparison to the scope of decisions that can be made by a health care agent. Our population-based data also show that 40% of Whites compared to 22% of Blacks report having an AD, which is consistent with some studies that have shown significant racial differences in ADs. Overall, however, the results of prior research on the influence of race and ethnicity on ADs are mixed. Some studies show that racial and ethnic minorities are less likely than Whites to have ADs [1–3,18,19] and some show no difference [20,21]. Regardless, there are still real differences that warrant consideration for efforts to improve ADs at the population level. Black–White differences in the rates of ADs are attributable to several factors including cultural differences in family-centered decision-making, distrust of the health care system, poor communication between health care professionals and patients, and a general lack of knowledge by Blacks regarding ADs [3,22,23]. While Blacks may be less likely to have an AD, because of the family-centeredness of end-of-life decision-making they may be more likely to have des-
61
ignated a health care agent or proxy [24]. While we were unable to explore this distinction in our study, prior research suggests that Blacks are more likely to prefer the involvement of multiple family members, friends, and spiritual leaders in meetings to make health care decisions [25]. This preference raises the question of whether the prevailing statutory model of a single person as proxy is appropriate in a multicultural society, and might be one reason for racial differences in AD rates [26,27]. Research on different proxy models is warranted. In the meantime, it seems likely that strategies to address end-of-life decisions in racially and culturally diverse populations should incorporate culturally tailored solutions. Policy development should recognize the variety of values and preferences found among diverse racial or ethnic groups. Efforts to assure reciprocity of ADs with novel proxy models will be important to assure that ADs executed in one jurisdiction will be honored in other jurisdictions for patients who may be travelling to another state or country to receive health care. This study also highlighted several modifiable barriers to AD completion. The leading reasons given for not having an AD were unfamiliarity with them and the belief that it takes too much time, effort, or money to complete them. Considering the State of Maryland recognizes both written and oral ADs, informational campaigns that inform the public and health care professionals of the option of oral ADs may be helpful [28]. Most respondents who did not have an AD stated that they would prefer to receive information from a physician or other HCP. However, younger adults were more likely than older adults to want information from the Internet. These findings suggest the need to support various communications information strategies, ranging from “ask your doctor” to Internet-based information sites. Provided that legislative efforts create more options for creating ADs, public health campaigns to educate the public will likely increase the use of ADs. Public service announcements given by young adult celebrities or athletes, or education in high school for students approaching the age of majority could also help garner increased awareness and use of ADs. The United States Patient Self-Determination Act of 1990, probably the largest public effort for advocating ADs in the U.S., requires all hospitals to provide adults at the time of admission information about their rights regarding ADs [29]. While laudable, this process does little to promote advance care planning, which ideally is the result of a conversation between patients and their physicians prior to hospitalization. Considering that only 12% of respondents in our study who had an AD obtained information from their physician, it seems safe to conclude that physicians and their patients are not having these discussions, or at least not to the extent they should be. Clinicians’ reluctance to discuss these matters has been identified as a barrier for advance care planning in the outpatient setting [30]. Yet more than 61% of the adults in our sample said they had preferences for end-of-life care and most wanted to discuss these issues with their physicians. Considering this, it would seem that a significant majority of the population would support legislative or regulatory
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incentives for physicians to discuss advance care planning with their patients at regular intervals. It is well documented that higher intensity, direct interventions result in improved AD completion rates across settings [31–33]. Thus, strategies such as ensuring that ADs are part of a total medical plan with includes a health care agent or proxy, could be beneficial. Finally, policymakers should consider incentives and programs for patients, health plans, HMOs, health care institutions, and health care professionals that could increase communication with patients about ADs. Information about ADs could easily be included in health insurance information packages. These incentives will need to be appropriate and sensitive to the complex issues involved. Despite the significant findings yielded by this research, our study has limitations and the findings should be interpreted prudently. Our data were based a sample drawn from the civilian, non-institutionalized adult population in Maryland living in households with access to a residential telephone. Thus, as with other telephone surveys, individuals without residential telephones and those unable to answer the telephone are excluded from the study. In addition, respondents were limited to registered voters who spoke English. Therefore, our results may not be generalizable to other population segments. The sampling methodology may have produced a biased sampled. Nearly 52,000 dials were made, of which there was no answer for half, and another 14,000 only reached an answering machine. This not a surprise because the proliferation of call-screening devices and cellular telephones contributes to high non-response rates [34,35]. We were unable to obtain information on eligibility of the non-responders. Thus to the extent that the non-responders’ decision not to participate was associated with feelings about ADs, the representativeness of our findings may be limited. Our study did not examine the actual existence of ADs—only the respondents’ report that they did or did not have them. Therefore, the results may be subject to recall bias, response bias, or incorrect responses from respondents who may not have understood the concept of an AD despite being informed about the nature and purpose of ADs at the beginning of the telephone interview. In addition, participants were not asked to describe the specific type of AD that they had; thus, to the extent that the type of AD influenced perspective on ADs and disparities supported by the data, these results may have also been limited. This study was limited to persons in Maryland, but because Maryland’s demographics are fairly similar to the U.S. population as a whole [36], we believe the results have relevance for the broader U.S. population. For instance, key demographics, such as the percent of persons 65 years and older, percent females, and percent of persons who graduated from high school, are very similar between Maryland and the entire U.S., thereby supporting the generalizability of these findings. Finally, this descriptive study was designed primarily to inform policy development, thus we did not strive to test study hypotheses. Our populationbased study helped to illuminate factors germane to AD policy formulation and could be relevant to other states and nations.
5. Conclusions Our study shows that sixteen years since the adoption of the Maryland Health Care Decisions Act, approximately one-third of adults in Maryland report having an AD, younger adults and Blacks are significantly less likely to have ADs, and approximately 61% of the population has preferences for end-of-life care. The formulation and implementation of public health policies to increase the use of ADs can be guided by responding to the preferences and barriers identified by the public. We advocate for more diverse approaches that are adaptable and value-congruent for patients and families of different ages, race, and ethnicity that are promoted through legislative and regulatory policy, and supported by advocacy and educational campaigns, community support systems, and efforts to increase discussions between physicians and their patients on these matters. Acknowledgments This research was supported by a grant from CareFirst BlueCross BlueShield. We thank Mr. William F. Casey, Vice President Government Affairs for CareFirst BlueCross BlueShield for his support of this work. We would also like to thank former Maryland Assistant Attorney General Jack Schwartz for his insightful comments on this research and review of this manuscript. We would also like to thank Kathleen Schneider, Rebecca Skiles, and Tova Reichel from Navigant Consulting on their help with this project. References [1] Brown BA. The history of advance directives. A literature review. Journal of Gerontological Nursing 2003;29(9):4–14. [2] Emanuel LL. Advance directives. Annual Review of Medicine 2008;59:187–98. [3] Wilkinson A, Wenger N, Shugarman LR. RAND Corporation, Prepared for the Office of Disability, Aging and Long-Term Care Policy, U.S. Department of Health and Human Services. Literature Review of Advance Directives; 2007. [4] Colello KJ, Mulvey J, Sarata AK, Williams ED, Thomas KR. End-oflife care: services, costs, ethics, and quality of care. Congressional Research Service. Report 7-5700; February 23, 2009. [5] European Science Foundation. Europe seeks consensus over living wills; October 31, 2008. Available at http://www.esf.org/researchareas/medical-sciences/news/ext-news-singleview/article/europeseeks-consensus-over-living-wills-514.html [accessed December 3, 2009]. [6] Department of Legislative Services, Library and Information Services, Maryland General Assembly (http://dls.state.md.us/ side pgs/library info/library info.html). Annapolis, MD. [7] Burg MA, McCarty C, Allen WJ, Denslow D. Advance directives: population prevalence and demand in Florida. Journal of the Florida Medical Association 1995;82:811–4. [8] LifeCircle South Dakota. Sanford School of Medicine at the University of South Dakota. South Dakota’s dying to know: end-of-life research; 2004–2007, 2007. [9] Braun KL, Onaka AT, Horiuchi BY. End-of-life preferences in Hawaii. Hawaii Medical Journal 2000;59:440–6. [10] Matzo M, Hijjazi K, Outwater M. Older Oklahomans’ knowledge, attitudes, and behaviors related to advance directives. Journal of Gerontological Nursing 2008;34:21–6. [11] Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest 2005;127(6):2188–96. [12] Morrison RS, Meier DE. High rates of advance care planning in New York City’s elderly population. Archives of Internal Medicine 2006;164:2421–6.
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