Journal of Gerontological Nursing

Research Brief 

Older Oklahomans’ Knowledge, Attitudes, and Behaviors Related to Advance Directives

Marianne Matzo, PhD, APRN-BC, FAAN; Kamal Hijjazi, PhD, RN; Mary Outwater, PhD

Abstract

This study sought to document older Oklahomans’ knowledge, attitudes, and behaviors regarding the decision to write an advance directive. In Oklahoma, 67% of individuals older than age 18 do not have an advance directive; 76% say the reason is that they “have not gotten around to it.” The findings from this study also indicate that some groups in Oklahoma, because of their age and race, need nurses to initiate this conversation. The discussion about advance directives should be part of the health promotion teaching provided by nurses and presented to the general public as a normal part of health care, with the focus on planning for a comfortable and peaceful death.

Abstract

This study sought to document older Oklahomans’ knowledge, attitudes, and behaviors regarding the decision to write an advance directive. In Oklahoma, 67% of individuals older than age 18 do not have an advance directive; 76% say the reason is that they “have not gotten around to it.” The findings from this study also indicate that some groups in Oklahoma, because of their age and race, need nurses to initiate this conversation. The discussion about advance directives should be part of the health promotion teaching provided by nurses and presented to the general public as a normal part of health care, with the focus on planning for a comfortable and peaceful death.

Dr. Matzo is Professor and Ziegler Chair of Palliative Care Nursing, and Director, Sooner Palliative Care Institute, and Dr. Hijjazi is Adjunct Professor, University of Oklahoma Health Sciences Center College of Nursing, Oklahoma City, Oklahoma. Dr. Outwater is Director, University of Oklahoma Public Opinion Learning Laboratory, Norman, Oklahoma.

This study was funded by the Hospice Foundation of Oklahoma, Inc.

Address correspondence to Marianne Matzo, PhD, APRN-BC, FAAN, Professor and Ziegler Chair of Palliative Care Nursing, University of Oklahoma Health Sciences Center College of Nursing, 1100 North Stonewall Avenue, Oklahoma City, OK 73117; e-mail: mmatzo@ouhsc.edu.

Advance directives were created to help prevent unwanted and ultimately futile invasive medical care at the end of life. Older adults are the largest consumers of health care services in the United States (Berry & Matzo, 2004); developmentally, end-of-life decision making is a common process for older adults and their families (Norton & Talerico, 2000). This study sought to document older Oklahomans’ knowledge, attitudes, and behaviors regarding their decision to write or not write advance directives. This article will discuss the findings related to age and the implications for nurses.

Literature Review

Advance directives are documents signed by a competent individual giving direction to health care providers about treatment choices. Two kinds of advance directives are the durable power of attorney (DPOA) for health care, which names a patient advocate, and a living will in which the individual’s wishes are stated in writing, but a patient advocate is not named. Advance directives typically address two kinds of care issues: who will speak for the patients if they cannot speak for themselves (e.g., health care proxy, DPOA) and what treatments the patients do or do not want (e.g., living will, health care directive) (Lynn & Goldstein, 2003).

Naming someone to be the DPOA may in fact be of greater value than actually completing an advance directive. Patients should have a conversation with their DPOA about their views regarding code status, ventilator support, and other factors. These conversations may need to be facilitated by a nurse. Encouraging patients to name a DPOA to advocate for them if they are unable to speak for themselves should ensure their preferences, values, and wishes are respected.

The most important reason to have an advance directive is to save patients and their families from undue suffering, to maintain autonomy and self-determination, and to contain costs in terms of hospital stay, nursing time, and medications. Effective advance care planning should be the standard of care for patients with life-limiting diseases. Families often ask nurses to answer questions about advance directives and to initiate conversation about them.

Nationally, the percentage of people who have completed advance directives is 5% to 25% (Douglas & Brown, 2002). Differences have been found in the prevalence of completed advance directives on the basis of individual demographic variables (Cohen-Mansfield, Droge, & Billig, 1991; Eleazer et al., 1996; Hammes & Rooney, 1998; Hopp & Duffy, 2000; Kahana, Dan, Kahana, & Kercher, 2004; Laakkonen, Pitkala, Strandberg, Berglind, & Tilvis, 2004; Morrison & Meier, 2004; Morrison, Zayas, Mulvihill, Baskin, & Meier, 1998; Murphy et al., 1996; Storch & Dossetor, 1994; Troyer & McAuley, 2006). Various studies have noted no significant difference by age for completion of advance directives (Murphy et al., 1996; Perry, Nicholas, Molzahn, & Dossetor, 1995). Other studies conducted in both the community and hospital settings have documented that older adults are more likely to have advance directives than are younger patients (Hammes & Rooney, 1998; Jacobson et al., 1996; Reilly et al., 1995; Silverman, Tuma, Schaffer, & Singh, 1995).

Regarding gender, there is disagreement in the literature whether gender is associated with the completion of advance directives. One study documented that women were more likely than were men to have an advance directive (Jacobson et al., 1996), whereas others found no correlation between gender and advance directives (Murphy et al., 1996; Reilly et al., 1995). In the case of terminal illness, some authors documented a correlation between having a terminal illness, the severity of illness, and having an advance directive (Jacobson et al., 1996; Schonwetter, Walker, & Robinson, 1995), but another study found no such association (Reilly et al., 1995).

McDonald et al. (2003) conducted a qualitative survey regarding preferences at the end of life and documented that people with advance directives tend to be older and White, speak English, have higher educational levels and incomes, and have health insurance. In addition, those with advance directives were more likely to have had previous education about advance directives, more numerous experiences with terminal or critical illnesses with their significant others, and higher religiosity, and to have talked with their physician about advance directives (McDonald et al., 2003). Patients in that study stated they had doubts about whether their preferences would be honored, although they had had discussions about end-of-life preferences with their families (McDonald et al., 2003).

Kahana et al. (2004) conducted in-person interviews with 231 older adults in Cleveland, Ohio, to examine potential facilitators or deterrents to end-of-life planning. Age was significantly correlated with having a discussion about end-of-life wishes but was not correlated with actually having an advance directive. Other predictors of having an advance directive were being White and having fewer hospitalizations (Kahana et al., 2004).

Method

The purpose of this survey was to gauge levels of public awareness about end-of-life issues in general and to establish a baseline for subsequent monitoring of attitudes toward end-of-life care. Data were collected between November and December 2005 by trained researchers at the University of Oklahoma Public Opinion Learning Laboratory after receiving institutional review board approval from the University of Oklahoma.

This quantitative study used a random telephone sample of Oklahoma residents. This sample was purchased from Survey Sampling, Inc., and was screened of many nonresidential numbers (e.g., business and nonworking telephone numbers) by Survey Sampling, Inc., to reduce the amount of time spent on this task by the interviewers.

This is the first survey to research one entire state on these issues. A total of 804 completed interviews were obtained among residents, with a 58% response rate and a margin of error of ±3.5% at a 95% confidence level. These data were weighted by age group to represent the state as accurately as possible. The survey was adapted from a survey of public awareness completed in South Australia (Palliative Care Council of South Australia, n.d.); it was cognitively tested and further revised. Questions were open ended and unprompted to elicit definitions in the respondents’ own words, sequenced to minimize bias from one question to another, and then recoded by the researchers by theme. For purposes of this article, responses have been grouped together by topic.

Findings

The weighted sample consisted of 792 interviews. Thirty percent of respondents were male, 70% were female, and 81% were White, 6% were African American, 7% were Native American, and 6% self-identified as Other. Regarding age, 12% were ages 18 to 24, 39% were ages 25 to 44, 30% were ages 45 to 64, and 19% were older than age 65. Sixty-two percent were married, and 80% stated that their religion was Protestant.

In general, 9 of 10 Oklahomans thought an advance directive makes the legal aspects of end of life easier and indicated it is a way to ensure their wishes concerning medical treatments will be carried out if they are unable to speak for themselves. Table 1 documents differences in practices and attitudes related to advance directives by age. Although 42.6% of those surveyed reported they had participated in making medical decisions for a family member or friend who could not make decisions for themselves, significantly (p = 0.001) more people age 65 and older (55.2%) than those younger than age 64 (39.8%) had made these decisions.

Practices and Attitudes Related to Advance Directives of Older and Younger Adults (Weighted N = 792)

Table 1: Practices and Attitudes Related to Advance Directives of Older and Younger Adults (Weighted N = 792)

Adults age 65 and older were more likely to report having an advance directive (56.5%) compared with adults ages 18 to 64 (27.3%). For all age groups, the primary reason cited for not having an advance directive was “haven’t gotten around to it” (76.2%).

Advance directives take effect only in situations in which the patient is unable to participate directly in medical decision making, making communication about wishes a key, and often missed, component. For those with an advance directive, 78.4% of older adults and 70.9% of younger adults (p = 0.071) have had this conversation. Most respondents (older adults = 75.3%, younger adults = 68.5%) have formally in writing or informally by word of mouth chosen someone (proxy) to make medical decisions for them. Oklahomans age 65 and older were significantly (p < 0.001) more likely to choose a child (55.9%) and those age 64 and younger were significantly (p < 0.001) more likely to choose a spouse (59.3%) as their proxy.

Regarding race and having an advance directive, as a group, those who self-identified as White or Native American were significantly (p = 0.034) more likely to have an advance directive (White = 34.4%, Native American = 33.9%) than were those who self-identified as African American (16.7%) (Table 2). Even when this variable was recoded as White versus Other, it remained significant.

Relationship Between Race and Age and Having an Advance Directive (Weighted N = 792)

Table 2: Relationship Between Race and Age and Having an Advance Directive (Weighted N = 792)

An interesting change occurred when age, race, and having an advance directive were examined. Native American respondents age 64 and younger were significantly (p = 0.087) more likely (30.6%) to have an advance directive than were White (28.6%) or African American (12.2%) respondents. Although the differences were not statistically significant for those older than age 65, White respondents were more likely to have an advance directive (58.5%) than were Native American (46.2%) or African American (42.9%) respondents.

When asked about their confidence in their families’ following their wishes, respondents age 65 and older (88.4%) were significantly (p = 0.002) more confident than those age 64 and younger (73.3%). With regard to physicians’ following their wishes, confidence was still significant (p = 0.057) among those age 65 and older (62.9%) and those age 64 and younger (49.5%). There was no significant differences (p = 0.544) between the two groups in their beliefs that the courts would follow their wishes, with 35.6% of the older adults and 28.9% of the younger adults being very confident.

Discussion

In the United States, two mechanisms that protect autonomy and self-determination are advance directives and living wills. In Oklahoma, 67.3% of adults older than age 18 do not have an advance directive. Among these, 76.2% say the reason is they “haven’t gotten around to it.” If this reason is accurate, then perhaps increasing access to the paperwork would greatly increase written documentation of advance directives and living wills. It may be useful for nurses who plan community health fairs to include a table at which people could ask questions about advance directives and complete the forms. However, perhaps instead of focusing on the paperwork, nurses should focus on initiating conversations about what people want regarding their end-of-life care and provide education about how to ensure their wishes will be followed. Advance directives are one such mechanism.

In Oklahoma, the people most likely to have an advance directive are White and older than age 65 or Native American and younger than age 65. Older adults reported having conversations about their end-of-life wishes with a significant other more frequently than did adults younger than age 65. Issues of advance care planning should be considered another area of health disparity that nurses need to address.

Yet, with 67.3% of the sample reporting they do not have an advance directive, a conversation about end-of-life wishes and goals would not be wasted on any Oklahoma resident. It may be that people do not respond to the conversation the first time advance directives are mentioned. McDonald et al. (2003) reported that those who were most likely to complete an advance directive had had a previous conversation about them with their physicians. Nurses should take particular care when working with subpopulations such as African Americans, who are least likely of any group to have completed advance directives.

Conclusion

Most Oklahomans reported initiating discussions about advance directives when faced with illness or a death in the family. Changing the context of end-of-life decisions from during illness to when people consider themselves to be healthy may help reframe discussions about advance directives as a normal life task. These discussions should be a part of health promotion teaching by nurses and presented to the general public as a normal part of health care, with the focus on planning for a comfortable and peaceful death.

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Practices and Attitudes Related to Advance Directives of Older and Younger Adults (Weighted N = 792)

Variable N Younger Adults n (Column %) Older Adults n (Column %) p Value
Have participated in making medical decisions for a family member or friend who could not make decisions for themselves 789 0.001
  No 388 (60.2) 65 (44.8)
  Yes 256 (39.8) 80 (55.2)
Have an advance directive 792 <0.001
  No 469 (72.7) 64 (43.5)
  Yes 176 (27.3) 83 (56.5)
Reason for not having an advance directive 516 0.319
  Don’t think it’s necessary 44 (9.7) 7 (11.5)
  Haven’t gotten around to it 351 (77.1) 42 (68.9)
  Another reason 60 (13.2) 12 (19.7)
Have formally or informally picked a proxy to make decisions for them 788 0.063
  No 202 (31.5) 36 (24.7)
  Yes 440 (68.5) 110 (75.3)
Relationship of proxy to respondent 548 <0.001
  Spouse 259 (59.3) 33 (29.7)
  Child 61 (14) 62 (55.9)
  Sibling 29 (6.6) 5 (4.5)
  Parent 56 (12.8) 0 (0)
  Other 32 (7.3) 11 (9.9)
Have talked in detail with proxy about medical treatments 551 0.071
  No 128 (29.1) 24 (21.6)
  Yes 312 (70.9) 87 (78.4)
Confidence in family to follow respondents’ wishes 771 0.002
  Very confident 464 (73.3) 122 (88.4)
  Somewhat confident 133 (21) 14 (10.1)
  Not very confident 25 (3.9) 2 (1.4)
  Not confident at all 11 (1.7) 0 (0)
Confidence in physicians to follow respondents’ wishes 692 0.057
  Very confident 281 (49.5) 78 (62.9)
  Somewhat confident 190 (33.5) 29 (23.4)
  Not very confident 61 (10.7) 11 (8.9)
  Not confident at all 36 (6.3) 6 (4.8)
Confidence in courts to follow respondents’ wishes 648 0.544
  Very confident 158 (28.9) 36 (35.6)
  Somewhat confident 160 (29.3) 26 (25.7)
  Not very confident 116 (21.2) 18 (17.8)
  Not confident at all 113 (20.7) 21 (20.8)

Relationship Between Race and Age and Having an Advance Directive (Weighted N = 792)

Variable N No Advance Directive n (Row %) Has an Advance Directive n (Row %) p Value
Race—Both Age Groups 790 0.034
  White 419 (65.6) 220 (34.4)
  African American 40 (83.3) 8 (16.7)
  Native American 41 (66.1) 21 (33.9)
  Other 32 (78) 9 (22)
Race—Younger Adult Group 643 0.087
  White 369 (71.4) 148 (28.6)
  African American 36 (87.8) 5 (12.2)
  Native American 34 (69.4) 15 (30.6)
  Other 29 (80.6) 7 (19.4)
Race—Older Adult Group 149 0.704
  White 51 (41.5) 72 (58.5)
  African American 4 (57.1) 3 (42.9)
  Native American 7 (53.8) 6 (46.2)
  Other 3 (50) 3 (50)
Authors

Dr. Matzo is Professor and Ziegler Chair of Palliative Care Nursing, and Director, Sooner Palliative Care Institute, and Dr. Hijjazi is Adjunct Professor, University of Oklahoma Health Sciences Center College of Nursing, Oklahoma City, Oklahoma. Dr. Outwater is Director, University of Oklahoma Public Opinion Learning Laboratory, Norman, Oklahoma.

Address correspondence to Marianne Matzo, PhD, APRN-BC, FAAN, Professor and Ziegler Chair of Palliative Care Nursing, University of Oklahoma Health Sciences Center College of Nursing, 1100 North Stonewall Avenue, Oklahoma City, OK 73117; e-mail: .mmatzo@ouhsc.edu

10.3928/00989134-20080201-08

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