Journal of Gerontological Nursing

Advance Directives: Why Community-based Older Adults do not Discuss Their Wishes

Lisa Inman, MSN, APRN, BC

Abstract

ABSTRACT

Health care providers and family members need direction when making health decisions for individuals who are unable. Advance directives allow individuals to maintain control of health care decisions. Despite that the majority of the population supports the right to express wishes related to end-of-life care, few implement advance directives. The purpose of this study was to determine reasons why community-based older adults discuss, do not discuss, or formalize advance directives. A convenience sample of 55 adults age 50 or older, participated in the study by answering a 31 -question self-report questionnaire. Death or serious illness of a loved one was the most influential factor prompting formulation of an advance directive. However, the majority of the population has not expressed their health care wishes in the form of advance directives. Therefore, continuing to educate and encourage discussion of advance directives is imperative.

Abstract

ABSTRACT

Health care providers and family members need direction when making health decisions for individuals who are unable. Advance directives allow individuals to maintain control of health care decisions. Despite that the majority of the population supports the right to express wishes related to end-of-life care, few implement advance directives. The purpose of this study was to determine reasons why community-based older adults discuss, do not discuss, or formalize advance directives. A convenience sample of 55 adults age 50 or older, participated in the study by answering a 31 -question self-report questionnaire. Death or serious illness of a loved one was the most influential factor prompting formulation of an advance directive. However, the majority of the population has not expressed their health care wishes in the form of advance directives. Therefore, continuing to educate and encourage discussion of advance directives is imperative.

After eating breakfast with his brother, J ames Kershaw, 57 years old, suddenly "slumped over" grabbing his chest. The emergency medical system (EMS) arrived on the scene and after 30 minutes of cardiopulmonary resuscitation Mr. Kershaw's pulse returned. To complicate the rescue efforts, it appeared the patient vomited and aspirated prior to EMS arrival The EMS removed multiple food particles form the patient's trachea. However, attempts to intubate had failed until arrival at the emergency department. Mr. Kershaw suffered severe anoxic encephalopathy as a result of his cardiopulmonary arrest and the neurologists predicted he would not recover. Supportive care was continued. On the fourth hospital day, the client's prognosis remained grave and clinical social work arranged for a family meeting to discuss the continuation of care for Mr. Kershaw.

During the family meeting, the social worker determined that Mr. Kershaw had never discussed his wishes for medical treatment preferences. His son, who was 18 years old, said "I don't think my father would want to be on life support for the rest of his life, * and that he should be taken off "the machines. " Mr. Kershaw's mother, who was in shock and denial, said "I know what they tell me, he's a vegetable - but I am not going to give up hope or prayers and I won't take him off the ventilator. "

The above situation illustrates how important preparation of an advance directive can be. Because family members may not always agree about a relative's personal beliefs or preferences about medical treatment, decisional conflicts between relatives can arise regarding what plan of care is in the patient's best interest or what the individual may want in such a situation.

Unfortunately, most people older than age 50 have not completed an advance directive or even discussed their health care preferences (High, 1990; Lo, McLeod, & Saika 1986; Sachs, Stocking, & Miles, 1992). The Patient Self-Determination Act (PSDA) does not promote discussion or increase the use of advance directives (Greco, Schulman, LavizzoMourey, & Hansen-Flaschen, 1991). Currently, it only requires health professionals to inform patients of their right to refuse medical care and complete an advance directive. Nurses must take steps to empower individuals to discuss end-of-life wishes. Nurses have a special trusting relationship with patients and their families, providing an excellent opportunity to discuss advance directives. If nurses are to meet the community's educational needs related to end-oflife treatment preferences, nurses need to know what those preferences are from the older adults' perspective.

Currently, several educational programs related to advance directives exist. However, research aimed at understanding the relationship between discussion of advance directives and formalizing those wishes in writing are limited.

The purpose of the present study was to determine:

* What are the reasons older adults give for discussing or not discussing advance directives?

* Is there a relationship between demographic factors and completion or discussion of advance directives?

* What are the educational preferences of older adults regarding advance directives?

LITERATURE REVIEW

The primary reason for establishing an advance directive is to allow individuals to maintain their authority and autonomy regarding medical decisions, even if the individual is unable to express those desires (Johns, 1996). Discussing advance directives is an action allowing an individual to remain in control of health care wishes (Colenda et al., 1998). Surveys (Greco et al., 1991; La Puma, Orentlicher, & Moss, 1991; Sachs et al., 1992) indicate the general population is in favor of having legislation that acknowledges the right to express wishes related to end-of-life decisions.

Although the majority of individuals would not want life-sustaining treatment if permanently unconscious, only 4% to 17.5% of adults have completed an advance directive document (La Puma et al., 1991). Although decisions regarding medical treatment are not in writing, approximately 70% of deaths in hospitals involved the decision to withhold or limit medical intervention.

As demonstrated in the above example, such situations can also lead to family discord when mutual consensus about treatment plans cannot be established. When advance directives do not exist, the family or physician is forced to make medical care decisions for the patient without knowing what the individual would have wanted (Greco et al., 1991).

Most older adults prefer a family member to be the surrogate decision-maker (Gamble, McDonald, & Lichstein 1991; Cohen-Mansfield et al., 1991; Colenda et al., 1998). However, the patient and surrogate often have not previously discussed treatment preferences. In such cases, the family is instructed to make a decision for treatment by considering the patient's best interest and hope the decision is one which the individual would have wanted (Greco et al., 1991).

As in Mr. Kershaw's case, the social worker held case meetings with the immediate family, the neurosurgeon, staff nurses, and clergy from the mother's church present. The neurosurgeon explained the gravity of Mr. Kershaw's situation. The other caregivers provided emotional and spiritual support. Because Mr. Kershaw's mother, unlike the other family members, was reluctant to remove supportive care, the social worker arranged for daily meetings to provide appropriate grief support. The decision to terminate Ufe support was postponed until family consensus could be reached. Had Mr. Kershaw discussed treatment preferences, his family would have known what course of care to follow. Therefore, discussion of advance directives becomes more important than the actual document.

Furthermore, according to Gamble, McDonald, and Lichstein (1991), the majority of older adults would want medical care limited if terminally ill. A study conducted by Moore and Sherman (1999) examined personal and family influences on the decision to complete advance directives. The study found that the primary reason adults ages 58 to 78 formalize advance directives was to avoid having life artificially prolonged by life support. Providing life-sustaining treatment, including intensive care, surgery, or heroic measures for individuals who want otherwise, is cosdy, unethical, and could be avoided if not desired by the patient (La Puma et al., 1991; Moore & Sherman, 1999).

Unfortunately, selection of a surrogate decision-maker is many times not discussed until an individual has become incapacitated, making it impossible to determine preferences. Because neither physicians, nurses, nor spouses are likely to know what individuals treatment preferences are, health care providers must seek better ways of determining clients' wishes (Storch & Dossetor, 1998). Initiating discussion of advance directives at well clinic visits can ensure designation of a surrogate before the client is incapable of making his true wishes known.

Despite the need for individuals to execute advance directives, living wills, or durable powers of attorney for health care (DPAHC), few people have actually completed such a document or even had a discussion about advance directives. Moore and Sherman (1999) determined a common disadvantage to formalization of advance directives was the respondents' inability to predict circumstances in the future. Participants in this study reported a fear of having life support terminated too soon when a chance of recovery may be possible (Moore & Sherman, 1999).

Research suggests a lack of knowledge related to advance directives and lack of encouragement from nurses and other health care professionals contribute to the low use of advance directive documents (Johns, 1996). Although intense educational interventions can significandy increase the familiarity with advance directives, studies suggest lack of advance directives use is more complex than simply a lack of knowledge or lack of encouragement from health care professionals (Cugliari, Sobal, & Miller, 1999; High, 1993a, 1993b).

Moore and Sherman (1999) suggest formulating advance directives is more than simply completing another legal document. Because of the sensitive nature of the subject, it is a process requiring extended dialogue. Therefore, it becomes increasingly important to understand the barriers that exist, making individuals reluctant to complete advance directives.

METHODS

Design and Procedure

Individuals older than age 50 were approached by the researcher or designated volunteer in various settings (e.g., in the hospital or doctor's office, at church, at senior centers). All of the individuals encountered were invited to participate, and participation was voluntary. After presenting a brief description of the study, individuals expressing interest in participating received a stamped envelope addressed to the researcher containing a detailed description of the study, a consent form, and a survey with explicit instructions for completing and mailing the survey. No further contact was made between the designated volunteer or researcher related to the study once the participant received the envelope. Permission was granted by the University's Institutional Review Board to conduct the study.

Figure. Tool used to determine the readiness of respondents to discuss advance directives.

Figure. Tool used to determine the readiness of respondents to discuss advance directives.

Sample

A convenience sample of 55 adults age 50 or older, participated in the study. The sample was obtained from a suburban area in a large midwestern city, and data were collected over a 3month period.

Instrument

The researcher developed a selfreport questionnaire containing a balance of 31 open and closed-ended questions aimed at answering the specific goals of this study. A pilot of the survey was conducted to determine readability and clarity of the individual items. Five lay persons older than age 50 verified the survey and directions for its completion were easily understood.

Content validity for the survey was established through expert review. Experts included members serving on the county's Advance Directive Committee consisting of two master's - prepared nurses, two registered nurses (one of whom was a parish nurse), and a social worker.

The survey was divided into four sections. After a brief description of advance directives, the first section consisted of questions regarding general knowledge of advance directives and elicited reasons why the respondents had or had not discussed such directives. Because the first segment of the survey contained open-ended, fillin responses, the researcher grouped similar responses into broad categories for easy tabulation.

The second section of the questionnaire contained questions related to the educational preferences of this population regarding advance directives. The third and fourth section elicited demographic information and information related to functional status.

RESULTS

Description of the Sample

The sample population consisted of 55 respondents ages 50 to 88, with 70 as the mean age. Eighty percent were women and the majority was White (89%). Most of the respondents had completed high school (47%), 29% had completed some college, and 10% had a undergraduate or graduate degree. The majority of the respondents were either widowed (45%) or married (44%). The respondents health perceptions varied, as well as their perceived closeness of personal relationships with friends, family, death, and living situation.

Reasons for Discussing Advance Directives

Prior to receiving the survey, 92% of the respondents had heard of an advance medical directive, living will, or DPAHC. However, only 54% of the respondents knew someone who had completed the written document. Most respondents (78%) had discussed end-of-life wishes with someone. Respondents most frequently listed their child or children (58%) as the person with whom they had discussed their end-of-life wishes. The second most frequent response was a relative who was not a spouse, child, sibling, or otherwise specified (24%); followed by spouse (7%); siblings (7%); friend (2%); and health care professional (2%).

Participants were prompted by several different reasons to discuss end-of-life wishes. Of the 55 respondents, 41 volunteered circumstances prompting discussion of advance directives. The researcher grouped the reasons into nine distinctive categories. Death or serious illness of a friend or significant other was the most prominent factor influencing the participant to discuss their end-of lifewishes with others (27%). Some stated they wanted their wishes known (24%). Others indicated factors including increasing age (15%), their own illness (12%), attorney prompting (5%), did not want life support (5%), job-related circumstances (5%), unsure why (5%). Only 2% of the respondents credited the decision to discuss advance directives to literature they had read.

Respondents also were asked if they had completed an advance directive or appointed a DPAHC. Forty-nine percent of the sample stated they had completed a formal written document stating their health care wishes for end-of-life care or serious illness. The same percentage also completed a formal written document appointing someone to make health care decisions for them if they were unable.

The researcher developed a tool to further quantify and attempt to determine the readiness of the respondents to discuss advance directives. The tool (Figure) indicated many of the respondents (9%) want to discuss end-of-life wishes, but have not. Thirty-two percent discussed their wishes with a friend or relative and 34% indicated they completed advance directives or put their wishes in writing. Yet, 2% of the respondents had not thought about end-of-life wishes, 5% indicated they did not want to discuss advance directives, and 9% had thought about advance directives, but had not discussed those wishes with anyone.

Reasons for Not Discussing Advance Directives

Participants who stated they had not discussed their end-of-life wishes with someone, or who had not filled out any formal documents stating their advance directives or a DPAHC, were asked to state their reasons for not doing so. Responses for the three questions were similar. Reasons for not discussing advance directives included, "haven't gotten around to it" and "not ready," "It is too morbid," and "I can't cope with the thought of death." Reasons given for not completing a formal document, either advance directive or DPAHC, in order of frequency include: (1) intend to, (2) did not have the documents, (3) do not want to, (4) unsure, (5) too young, (6) no one to appoint.

Educational Preferences

To better determine nursing implications for the study, a section of the survey was devoted to the educational preferences of the respondents. Twenty respondents (36%) answered questions related to their educational preferences. Seventy-five percent of the 20 respondents stated they preferred to learn about advance directives by reading on their own, and 20% would prefer to attend a class. The remainder (5%) desired one-on-one discussion. Respondents (n = 27) also indicated their home would be the most comfortable and accessible learning environment (30%) for learning about advance directives, followed by senior centers (26%), churches (22%), libraries (11%), doctors' offices (7%), and hospitals (4%).

When respondents were given a list to choose from whom they would feel most comfortable learning about advance medical directives, the majority (37%) chose a doctor, 29% had no preference, 11% said an attorney, and 8% chose a nurse. The remaining 15% were equally distributed between a librarian, clergy, and peers.

Because of the sensitive nature of the subject, respondents were asked to indicate what they perceived as the best time to begin learning about advance directives. Overwhelmingly, the respondents (n = 44) chose "when you are well" (80%). The remaining respondents said age should be a determinate for discussing advance directives. The most common ages suggested were ages 16 (2%), 21 (2%), 50 to 60 (7%), and 70 to 75 (6%).

Relationship Between Completion of Advance Directives and Demographic Factors

Fisher's exact test indicated there was significant relationship (p < .05) between completion of advance directives and gender, having an estate will, and having a close relationship with a sibling. Religious preference, type of insurance, and functional status were also examined, but none were significantly related to discussion of advance directives.

DISCUSSION

The sample of older adults in this study consisted primarily of women. Thus, the significant relationship between completion of advance directives and gender has no applicable clinical significance. However, the respondents did have varied demographic characteristics and life experiences.

Age, race, religion, and educational level continue to be weak predictors to completion of advance directives. These findings are similar to a previous study conducted by Colenda et al. (1998). A positive finding was that almost all of the participants surveyed had heard of advance directives, and most had discussed end-of-life wishes with someone, although less than half formalized those wishes.

A second finding of this study was that a significant relationship existed between discussion of advance directives and older adults who admit to having a close relationship with siblings. Respondents in this study who reported having a discussion about advance directives (82%) stated that discussion was with family members. This finding supports previous studies that have shown older adults prefer family members to be surrogate decision-makers, regardless of whether or not the individual and the surrogate previously have discussed treatment wishes.

Perhaps, having such closeness with family provides a sense of security in knowing the family will make appropriate end-of-life decisions on behalf of the individual. Therefore, the individual would have no sense of urgency toward formalizing such wishes. Likewise, an individual who does not feel such closeness with family members or who has no immediate family members to rely on as surrogate may feel a sense of urgency to complete an advance directive.

Having a will for an estate proved significant in relation to discussion of advance directives as well. In some cases, respondents even stated that formalizing end-of-life wishes with an advance directive or DPAHC was "part of making a will and testament." While only 5% of the sample reported completion of such forms was attorney initiated, it is hopeful to assume a large number of individuals younger than age 50 have completed estate wills, thus increasing the use of advance directives and DPAHC in a younger population.

While a primary source of education in the hospital setting is providing patients with literature about advance directives on admission, only 2% of the respondents credited literature as a factor leading to discussion or formalization of advance directives. Yet, 75% of the respondents stated they preferred to learn about advance directives by reading on their own. Based on these contradictory findings, it becomes important to assess the timing in which the literature is provided. Because the majority of respondents stated that information about advance directives should be provided when a person is well, perhaps providing literature at such a time would have a greater impact on the outcomes of advance directive literature.

A disappointing finding in this study was that less than 8% indicated nurses as the desired educator for advance directives. When, in fact, nurses as trusted primary caregivers and patient advocates have an excellent opportunity and responsibility to discuss these wishes with patients. This finding may be attributed to the fact that many elderly individuals still envision nursing as a physiciandependent role and are unaware of the autonomous practice discipline nursing has become.

IMPLICATIONS FOR NURSING PRACTICE

According to Johns (1996), lack of involvement in research related to advance directives suggests nurses are not aware of the role they play in advance directive outcomes. Because the PSDA does not promote discussion or increase use of advance directives, further steps must be taken to empower clients to discuss end-oflife wishes.

Based on this study, initiating discussions or providing information about advance directives when an individual is well may generate more positive outcomes than presenting information when an individual is ill. Therefore, discussions of advance directives should be initiated on an outpatient basis, or perhaps by health insurance companies at time of enrollment. Currently, only Health Maintenance Organizations (HMOs) provide this information, covering only 12% of the population.

Because a large segment of the population prepares estate wills, it becomes important for nurses to educate attorneys about the benefits of preparing advance directives and DPAHC. Encouraging attorneys to carry necessary forms and discuss advance directives with clients who are preparing a traditional will could increase the use of advance directives and DPAHC.

Finally, continuing to educate the community on advance directives is imperative. Based on the educational preferences of this population, teaching methods should be designed to provide literature at a time when an individual is not compromised by illness. Modules and classes could be developed to be presented in a variety of places with the home, senior centers, and churches as primary sites.

Most of the respondents indicated they would feel most comfortable discussing end-of-life wishes with a physician. This information supports a study conducted by Gamble et al. (1991) stating approximately 68% of clients want to discuss end-of-life wishes with their doctor, and 53% want the physician to initiate the discussion (Lo et al., 1986). However, many physicians believe it is the patients' responsibility to initiate these discussions.

Furthermore, most physicians feel uncomfortable discussing end-of-life wishes that involve withdrawing treatment (La Puma et al., 1991). Therefore, nurses need to educate physicians about advance directives and encourage physicians to refer patients to nurses for education about advance directives.

Finally, a more achievable goal for nursing at this point may be to increase discussion of end-of-life wishes among individuals rather than measuring effectiveness of education by completion of a formal document. After all, discussion of end-of-life wishes gives health care providers and family members direction for choosing therapy when a formalized document is not in place.

CONCLUSION

Lack of knowledge or understanding continues to be a barrier for increasing the number of individuals who discuss and complete advance directives (Gamble et al., 1991; Greco et al., 1991; Johns, 1996; La Puma et al., 1991). Educating the community and patients is one way to attempt to overcome this barrier. As a primary nursing role, development of community and patient education interventions is paramount to the goal of encouraging people to discuss advance directives (Greco et al., 1991). However, repeated studies indicate lack of knowledge is not the only barrier preventing patients from using advance directives (Cugliari et al., 1999; High, 1993a, 1993b; Hare & Nelson, 1991; Sachs et al., 1992).

Therefore, further research must be conducted in the following areas:

* Strategies for approaching individuals about advance directives and encouraging discussion.

* Public attitudes about the nurse's role in initiating discussion of advance directives.

* Factors necessary for progression from discussion to formalization of end-of life wishes.

REFERENCES

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10.3928/0098-9134-20020901-08

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