Thesis Nurs. 1997 G679a c.2 Gosnell, Deborah. Advance directives in the primary care 1997. Advance Directives in the Primary Care Setting by Deborah Gosnell Submitted in Partial Fulfillment of the Requirements for the Master of Science in Nursing Degree Approved by: Juyith Schilling, CRNP, Ph/ 5/7/ ? Date Committee Chairperson of Edinboro University of Pennsylvania el Geisel, PhD, RN ommittee Member Edinboro University of Pennsylvania sr/f /9 JAlice Conway, Pfetr, RN Committee Member Edinboro University of Pennsylvania Date Ackowledgements First, I would like to thank Dr. Judith Schilling for her constant support, assistance, and editing as chairperson during this project. I would also like to thank Dr. Geisel and Dr. Conway for support and assistance as members of my committee. Also I would like to thank my husband for his extreme patience and support throughout this project. ii Advance Directives in the Primary Care Setting Abstract This study investigated the research questions: How many people have an advance directive? and Do people want their primary care provider to discuss advance directives during a routine office visit? This nonexperimentalt quantitative study used a researcher designed questionnaire. The questionnaire was given to 100 members of a local wellness center who varied in sex, age, marital status, and religion. Seventy-nine questionnaires were returned. Twenty-three percent of the research subjects indicated that they had advance directives, which was higher than the 15%-18% reported in the literature for random populations. But, only 43% wanted their primary care provider to discuss advance directives during a routine office visit, well below the 65%-68% reported in the literature for random populations. The results of this study, in contrast to other studies in the literature, showed that these subjects did not want their primary care provider to initiate a discussion of advance directives. iii Table of Contents Content Page Chapter I: Introduction 1 Statement of the Purpose 2 Theoretical Framework 3 Assumptions 5 Definition of terms 5 Limitations 6 Summary 6 Chapter II: Review of the Literature 8 Historical Background 8 Legal/Bioethical View 8 Health Care Professionals' Views 10 Public/Patient View 14 Summary 18 Chapter III: Research Methodology 20 Research Design 20 Sample 20 Informed Consent 20 Instrumentation 21 Analysis of Data 21 Summary 22 23 Chapter IV: Results iv Chapter V: Summary, Conclusions, and Recommendations 28 Summary 28 Conclusions 29 Recommendations 31 References 32 Appendixes 36 A. Letter of Permission 37 B. Introduction Script 38 C. Advance Directive Questionaire 39 v List of Tables Table Page 1 . Age Category Responses 25 2. Marital Category Responses 26 3. Religion Category Responses 26 vi 1 Chapter I Introduction The discussion of terminating unwanted life support came into the public limelight in 1976 with the Karen Quinlan case. This case was the basis for much discussion about living wills. Then in 1977, California's Natural Death Act became the first law to give legal force to living wills (Emanuel & Emanuel, 1989). Finally in 1990, the Patient Self-Determination Act was passed as a federal law. A goal of this statute is to encourage, but not require, adults to fill out advance directives, proxy appointments, or both (Wolf, 1991). By 1991 , 40 states had enacted living will statutes. Although only 15% to 18% of the public had an advance directive, it was found that 89% of people wanted some form of advance directive (Emanuel, Barry, Stoeckle, Ettelson, & Emanuel, 1991). There is a need to know why there is such a large discrepancy between these numbers. LaPuma, Orentlicher, and Moss (1991) suggested three possible reasons why so few people have actually completed advance directives. First, physicians have viewed such directives as a patient responsibility instead of a professional or institutional one. Second, many physicians are uncomfortable discussing the 2 withholding or withdrawing of treatment, believing that if patients want to discuss it, they will ask. Third, many younger, healthy patients, and their physicians, believe that advance directives are only for the elderly or the chronically ill. Several studies have concluded that discussions of advance directives should not start in the hospital, but in the clinician’s office during a routine visit (Orentlicher, 1990; Saultz, 1990; LaPuma et al., 1991; Wolf, 1991; and Edinger & Smucker, 1992). These studies also concluded that patients expected the health care provider to initiate the conversation. Advance directives is an important issue because, as estimated by Orentlicher (1990), for perhaps 70% of Americans, a decision will be made whether to provide life-sustaining medical care for them when devastating illness becomes terminal or irreversible. Even though advance directives may not answer all questions, they can assist clinicians and loved ones to make decisions in accord with the patient’s wishes. Statement of the Purpose The purpose of this study is to determine if people want their primary care provider to initiate a conversation about advance directives during a routine office visit. This will provide insight into whether 3 the nurse practitioner or physician should initiate such conversation with their patients during routine visits, or wait for the patient to initiate the conversation. This study will investigate the following research questions: How many people have advance directives? Do people want their primary care provider to discuss advance directives during a routine office visit? Theoretical Framework This study is based on Orem's (1995) self-care theory of nursing. Her definition of self-care is: Action of mature and maturing persons who have developed the capabilities to take care of themselves in their environmental situations.... Self-care is the practice of activities that individuals initiate and perform on their own behalf maintaining life, health, and well-being (p. 117). This statement is relevant to advance directives because mature people who have developed the capabilities to care for themselves will want to continue to have some influence over their care in the event that they lose their ability to make competent decisions. An advance directive is a person's way of 4 contributing to their well being after they become unable to communicate. Orem (1995) writes that self-care is a continuous contribution to ones own existence, health, and well-being. One of Orem's premises is that adults have the right and the responsibility to care for themselves in order to maintain rational life and health. Therefore, based on Orem's theory, an adult would have both the right and the responsibility to have an advance directive. Some of Orem's (1995) propositions may pertain more specifically to advance directives. First, adults may or may not choose to engage in specific self-care actions. Second, self-care requires general knowledge of self-care goals and practices, as well as specific knowledge about self including health state, and the physical and social environment. Self-care may require contact and interaction with providers in the health care services. Lastly, self-care requires internally oriented activities directed to controlling behavior; and externally oriented behavior directed to controlling the environment, to establishing contact and „ • x. • 4 4-h ni-hprs communication with otners, and cu^ to securing and utilizing resources. Patients not only need to receive information to make advance from their primary care provider directives , but also need to discuss the advance directive with all those who might be involved in decisions about their 5 care, in so doing, decisions can be made according to their wishes should they become incompetent to do so on their own. Assumptions This study is based on the following assumptions: 1 . Research subjects will respond honestly to questions. 2. Research subjects will be considered mentally competent if they can understand the explanations and instructions given at the beginning of the interview. Definition of terms Special terms will be defined as follows: 1 . Primary Care Provider is any physician, nurse practitioner, or physician's assistant who addresses a large majority of personal health care needs, develops a sustained partnership with patients, and practices in the context of family and community (Hickey, 1996). 2. Advance directive is any document that communicates a person's wishes regarding medical care, or names someone to make decisions on that person's behalf, should that person become unable to make their own decisions. 3. People are persons that are 18 years of age or older. 6 Limitations Limitations of this study are as follows: 1 . This study was limited to a small group of people in one small town in northwest Pennsylvania. 2. There was no questioning about major life events that might effect responses to the questions. 3. The research subjects in this study were a convenient sample. 4. The research tool used in this study was researcher-written. 5. As a result of the research setting, subjects were likely to be health-conscience. Summary Advance directives are an important issue because, for most Americans, a decision will be made whether to provide life-sustaining medical care when devastating illness becomes terminal or irreversible (Orentlicher, 1 990) . The purpose of this study was to determine if people want their primary care provider to initiate a conversation about advance directives during a routine office visit. This provided insight into whether nurse practitioners, physicians, and physician's assistants should initiate such 7 conversations with patients during routine visits or wait for patients to initiate the conversation. Chapter II 8 Review of the Literature The purpose of this study was to determine if people have an advance directive and want their primary care provider to initiate a conversation about advance directives. This review of literature provides an historical overview of the need for, and the problems associated with, advance directives. Historical Background Nationwide discussions on advance directives started in 1 976 with the Karen Quinlan case. In 1 977, the first state law, California's Natural Death Act, was passed to support people’s right to make decisions about their death (Emanuel & Emanuel, 1989). In 1990, the Patient Self-Determination Act was passed as the first federal law mandating education of patients concerning advance directives (Wolf, 1991). In April of 1992, the Commonwealth of Pennsylvania passed legislation regarding advance directives (Advance Directive for Health Care Act, 1992). Legal/Bioethical View Many bioethicists are supportive of advance Robert M. Veatch (1982) directives. As early as 1 982, needed in legislation to make advance discussed what was that it is no longer possible directives work. He wrote 9 to take the position that no policy is best; policies regarding decisions whether 1 or not to treat the terminally ill should be clarified publicly. Veatch (1982) also identified several points that a model bill should include. First, it needs to specify that wishes expressed while competent remain valid after the individual becomes unable to express herself or himself. Second, this right should not be limited to the terminally ill. Third, there will be a penalty specified for not following a patient’s instructions. Fourth, medical personnel should have the right to withdraw from any case in which following the patient's wishes would violate their conscience. Fifth, the bill should specifically state that death from refusal of treatment is neither suicide nor homicide for legal and insurance purposes. Sixth, there should be a minimum age for activation of these rights. Seventh, the bill needs to address who will make decisions that are not specifically covered in the directive after the person becomes incompetent. In 1984 John Mahoney wrote that the choice of treatment must lie with the patient or, if incompetent, with someone who knows the person best. Such a conclusion living wills and would give strength to the idea of medical proxies. 10 Diana Bader (1992) writes that ” the individual who lacks decision-making capacity has a need and right to have preferences, wishes, and values respected” (P122). She believes this can be accomplished with either a living will or a decision-making surrogate who is in a position to know what is in the best interest of the patient. Health Care Professiona1s1 Views Bioethicists have given encouragement to the discussions of advance directives and most physicians are also in favor of them (Davidson, Hackler, Caradine, & McCord, 1989; Johnson, Pfeifer, & McNutt, 1995). In fact, this search of the literature did not find any articles arguing against advance directives. Some writers had serious problems with how the directives are written (Emanuel & Emanuel, 1989; Brett, 1991), how they are executed (LaPuma et al., 1991; Curtin, 1996; Wolf, 1991; Danis, Southerland, & Garrett, 1991), or who initiates discussions about them (White & Fletcher, 1991; Emanuel et al., 1991), but all thought it was worth trying to solve these problems. LaPuma et al. (1991) discussed the advantages and disadvantages of the federal Patient Self-Determination Act. Benefits included patients being informed about their rights without having to ask, provisions to ensure that clinicians make an effort to honor 11 their patient’s wishes, and reduction of clinicians’ anxiety about liability when following patients’ preferences. Potential disadvantages included people not understanding the written materials provided, hospitals not being the optimal setting for the discussion of advance directives, legislative imposition of minimal standards that then become all that is done, and unethical use of directives to decrease care costs for uneducated patients. White and Fletcher (1991) also agreed that a big step in eliminating the disadvantages of advance directives would be for primary care providers to take responsibility for initiating discussions about advance directives with their patients in the office setting. Clinicians can assess their patients’ knowledge of advance directives and get a clearer picture of their values. In 1991 Wolf gathered a multidisciplinary group that included physicians, nurses, philosophers, and lawyers. The purpose was to identify myths associated with advance directives and solutions to correct them. The first myth was the belief that patients do not want to talk about death and, £hg;refore, advance directives. One study, however, indicated the opposite. that these feeling of control (Emanuel discussions give patients a et al., 1991). A 12 second myth is that discussions of advance directives take too much time. Wolf's group recommended that clinicians share this task with other members of the office staff. There is also evidence that such a discussion could take as little as 15 minutes (Emanuel et al., 1991). The third myth is the belief that the clinician’s decisions concerning "best interest" (Wolf, 1991 , p. 1668) of the patient should take priority over the patient’s own choices. There was disagreement over this problem. The multidisciplinary group did agree that overriding a living will should not be done lightly, or by one practitioner alone, and that a trusted relative or friend of the patient should be involved in the final decision. The last myth is the view that a directive is not reliable because patients may have changed their minds. The group suggested that clinicians should re-examine directives periodically with their patients. One study, however, showed that patients' choices were very stable (Davidson et al., 1989). It was recommended that a clinician not disregard directives just because it is possible that the patient could have changed his mind. of advance directives Physicians are also in favor in 1989 (Davidson according to an attitudinal study done filled out by 790 et al., 1989). Questionnaires were 13 physicians throughout Arkansas. On the general attitude question, 79.2% had a positive attitude, only 1.5% had a negative attitude, and the rest were neutral. The greater the number of experiences with patients who had advance directives, the more positive the physician's attitude. This study also asked about the stability of patients' decisions. Only 12% of the respondents reported patients changing their minds when they became terminally ill. Because of this 12%z the researchers recommended that physicians communicate as long as possible with their patients about their treatment wishes. In contrast to the above study, Virmani, Schneiderman, and Kaplan (1994) found that there was a significant problem with the communication between patients and physicians regarding advance directives. They interviewed 115 terminal cancer patients and 22 of their physicians Of those patients interviewed, 55.7% had advance directives. When the physicians of the patients with directives were asked if their patients stated either "no" or "I had directives, 76% of them of the patients without don't know." When the physicians question, 90% responded directives were asked the same either "no" or "I don't know." There was also patient-physician disagreement 14 about whether they had had a discussion about future health care plans. In the patient group with directives, only 32% of patient-doctor pairs both stated that they had had a discussion; in 38% of these pairs, the doctor said "yes" and the patient said ” no"; ; and in 27% of the pairs, both said "no. ii In the pairs without directives, 35% of the patient-physician dyads were in agreement and a 65% majority were in disagreement concerning this question. This lack of communication is surprising in the case of terminal cancer patients where it would be expected that both patient and physician would have frequent discussions about future care and advance directives. The most frequently stated reason for not having such a discussion was "the subject never came up" for both patient and physician (Virmani et al., 1 994, P. 912). Further study is needed to determine if patients want the primary care provider to take the initiative. Public/Patient View studies documenting There have been a number of advance directives that patients also want and support 1988; Emanuel et al. , 1991). As early (Johnson & Justin, Self-Determination federal Patient as 1988, before the Act, a study was done by Johnson 15 and Justin (1 988). They developed a values history form that asked people about the following: their feelings on death and dying, the extent to which they would want to be kept alive if diagnosed with a terminal or irreversible illness, where they would want to die if they had a choice, and whom they would trust to make decisions for them if they were to become incompetent. The researchers then interviewed 400 patients. They asked: Can a nurse practitioner gather the information as efficiently as a physician? Do patients want this information recorded? Is the primary care office, as well as the patient's home, an appropriate location to obtain a value history? The results of this study showed that of 284 subjects who had not signed a living will, 237 requested to do so. One hundred percent of the subjects interviewed wanted to determine how they would be treated when dying. They also had no preference as to whether nurse practitioners or physicians discussed this with them. difference between office Subjects saw no significant and home discussions, finding one place to be as appropriate as the other. However, this study did not evaluate the hospital setting. 405 outpatients and 102 members In 1991 a survey of Boston (Emanuel et of the general public was done in al., 1991). This study found that 16 93% of the outpatients and 89% of the general public wanted advanced directives. However r only 15% of outpatients and 18% of the general public had directives. When asked why they did not have an advance directive, the major barriers cited were the patient’s expectation that the physician should initiate the process, and the sense that they were only relevant for those persons who are older or in poor health. The researchers also assessed the time taken to discuss directives and to help a patient fill out an advance directive form. It was found that it took an average of 14 minutes, with a range of 8 to 44 minutes. This study concluded that patients do want advance directives, and that they expect the health care provider to initiate the conversation. It was also noted that the conversation could be handled in an office visit with some planning. The suggestion was made that third-party payers be pressured to reimburse for such visits. Two studies specifically asked whether the patient discussion of advance wanted the physician to initiate a 1992; Johnson et al., directives (Edinger & Smucker, had 300 adults fill 1995). Edinger and Smucker (1992) out a questionnaire. Sixty-eight percent wanted the the subject, 11% did not, and 21% physician to raise were uncertain. The researchers suggested that physicians initiate the discussion rather than waiting for the patient; patients who object can be identified by their responses to the first few questions asked. Johnson et al. (1995) also used a questionnaire to determine when the discussion of advance directives should begin. Eighty-four percent of 329 subjects thought the discussion should begin while they were still healthy. Sixty-five percent felt that it was the responsibility of the physician to initiate the discussion. Subjects were also asked how the discussion should be conducted with 33% preferring that it be done in one visit and 67% wanting it done over several visits. Another question concerned what patients thought should be included in the discussions. In order of priority, they listed description of life-sustaining treatments, their health at the time, the chance of surviving, the probability of full recovery, and the effects of life-sustaining treatment on the family. Seventy-eight could be used as part percent agreed that a videotape concluded from this of the discussion. The researchers addressing problems with study that the key to the education discussions of advance directives is in of the primary care providers. increasing and Hare and Nelson (1991) found that improving patient—physician discussions 18 increases the number of patients with advance directives. They divided study participants into three groups. The control group received no education or discussion; a second group received an education pamphlet only; and a third group received a pamphlet and a one-on-one physician-initiated discussion about advance directives during that visit. When the study ended, none of the 55 people in the control group had completed advance directives, none of the 60 subjects in group two had completed directives, and 14 of the 52 in group three had completed directives. Although the interventions for group three had been successful, upon comparison of these results with other studies, the implications become less clear. The completion rate of 27% is no different than is reported in the literature for random population groups. The Since results of this study still cannot be ignored. group three was the only group with any advance directives, some effect is implied (Hare & Nelson, 1991). Summary that patients This literature review indicates the idea of advance and primary care providers support in several areas directives. Further research is needed who should initiate to solve some major problems such as discussions should be and when discussions, where conducted, what should be 19 included in these discussi ons, and what form of education about directives is most effective. 20 Chapter III Research Methodology This study investigated the following research questions. How many people have advance directives? It also asked: Do people want their primary care provider to discuss advance directives in a routine office visit? Research Design This researcher used a nonexperimental design. It was a quantitative study using a survey approach. Sample Participants of this study came from the members of a wellness center operated by a community hospital. A convenience sample of 100 people attending the wellness center during varied hours and on varied days of the week was asked to fill out a questionnaire. Seventy-nine participants completed the questionnaire for a 79% rate of completion. This site was chosen in order that research subjects would be varied as to their age, gender, marital status, and religion. Informed Consent Permission to interview clients at the wellness center was given by the director of the center under the condition of anonymity and without coercion of the client (see Appendix A). Informed consent from the subjects was assumed if the subject answered the questionnaire. 21 Instrumenta t i on The instrument used was a series of questions developed by the researcher. The researcher read a prepared script that introduced herself, told the subject what was being studied, defined the term advance directive r and asked the subjects to answer six questions (see Appendix B). The subjects were then given thequestionnaire with six questions (see Appendix C). An envelope was placed by the wellness center's door for collection of the questionnaires. The subjects were asked not to sign the questionnaire so that their answers would remain anonymous. A pilot study was done in order to establish clarity of the questions. To do so. the researcher interviewed six people from a community Methodist church. The subjects understood the definition of advance directives and needed no further explanation. Five of the six subj ects, however, did not understand the term primary care provider. To correct this, the researcher added an explanation of the term to the questionnaire. Analysis of Data Descriptive statistics was utilized to analyze this data. The researcher used percentages to describe and analyze the data. Summary In summary, the research questions of this study asked how many people have advance directives and whether people wanted their primary care provider to discuss advance directives during a routine office visit.A convenience sample of 79 subjects was taken from a wellness center. The subjects filled out a questionnaire developed by researcher. The data was analyzed using descriptive statistics. 22 Chapter IV 23 Results The researcher conducted this study over a one week period at a wellness center in a small town in western Pennsylvania. One hundred questionnaires were distributed to wellness center clients by the researcher. An envelope was placed at the main desk for collection of the completed questionnaires. Seventy-nine were returned for a return rate of 79%. Demographic data from the research subjects included age, sex, marital status, and religion. There were no subjects in the age categories of 18-19 or 81 and above. The largest age category was 41-50 at 34%. The remaining subjects were age 20-30 (20%), age 31-40 (22%), age 51-60 (11%), age 61-70 (8%), and age 71-80 (3%). The gender categories were 44% male and 56% female. Seventy-two percent of research subjects were married, 16% were single, 8% were divorced, and 2% were widowed. Religious affilliation included 33% Catholic, 61% Protestant, and 6% other. The first research question asked: Do you have an advance directive? Twenty-nine percent of the ii This number respondents answered ”Yes to this question. is higher than the 15% to 18% reported in the literature for random population groups . (Emanuel et al., 1991). Looking at genders, 29% of the males and 27% of the females reported having an advance directive. Table 1 includes the age distribution of respondents with an advance directive, and wanting a discussion about 24 advance directives with their primary care provider. It can be seen that 86% of the 61 to 70 year olds stated that they did have a directive, with the 51 to 60 year old respondents being the next age group most likely to already have a directive. In terms of marital status (see Table 2)r 50% of widowed respondents had an advance directive, as did 33% married subjects. No divorced subj ect, and only 15% of single subjects had an advance directive. Forty-two percent of Protestants and 19% of the Catholics had an advance directive (see Table 3) . The second research question stated: Do you want your primary care provider to discuss advance directives with you during a routine office visit? Thirty-four of the 79 respondents (43%) answered Yes to this question. Eight of the 18 respondents (44%) who had advance directives wanted their primary care provider to initiate this discussion and 26 of the 61 respondents (43%) who did not already have a directive wanted the discussion initiated. 25 Table 1 Age Category Responses Group n 20-30 16 1 6% 6 38% 31-40 17 3 1 8% 7 41 % 41-50 27 7 26% 13 48% 51-60 9 5 56% 4 44% 61-70 7 6 86% 2 29% 71-80 3 1 33% 2 67% Total 79 23 Have Directives n % Wanted Discussion n % 34 Note. Percentages rounded to nearest whole number. Analysis of the demographics revealed that 43% of the male subjects and 45% of the females wanted a discussion. The largest group who wanted to discuss advance directives with their primary care provider was between the ages of 71 and 80 (67%); only 29% of the 61 to 70 year olds wished to have such a discussion, (see Table 1). Concerning marital status, 50% of the widowed respondents wanted the discussion as compared with 29% of divorced respondents; single and married subj ects 26 Table 2 Marital Category Response Group n Single 13 Married 57 19 33% 25 44% Divorced 7 0 0% 2 29% Widowed 2 1 50% 1 50% 79 22 Totals Have Directives ___ n __ % 2 1 5% Wanted Discussion ___ n __ % 5 38% 33 Note. Percentages rounded to nearest whole number. Table 3 Religion Category Responses Have Directives __ % ___ n 1 9% 5 Wanted Discussion n____ % 11 42% Group n Catholic 26 Protest. 48 20 42% 21 44% 5 1 20% 3 60% 79 26 Other Totals 35 Note. Percentages rounded to nearest whole number. were intermediate. Complete marital data are shown in 27 Table 2. By religious affiliation, (see Table 3), 42% of Prostestants, 19% of Catholics, and 20% in the " other” group wanted a discussion of advance directives with their primary care provider. This study had a 79% return rate of the questionnaires. The first research question showed that 18 out of the 79 (23%) had advance directives. The second question found that only 34 out of 79 (43%) wanted their primary care provider to discuss advance directives during a routine office visit. Chapter V 28 Summary, Conclusions, and Recommendations This chapter summarizes the results of this study and conclusions are discussed. Recommendations are made for further research. Summary The first research question in this study was: Do you have an advance directive? The second research question was: Do people want their primary care provider to discuss advance directives during a routine office visit? A review of the literature, including historical background, healthcare professionals' views, and public/patient views, indicated that patients and primary care providers support the idea of advance directives. One study showed that 79.2% of physicians had a positive attitude toward advance directives (Davidson et al., ^989). Studies found that 65% to 68% of random populations wanted their primary care provider to initiate a conversation about advance directives. (Edinger & Smucker, 1992; Johnson et al., 1995). One hundred questionnaires were distributed to return of members of a local wellness center with a elicited concerning age, Demographic data was gender, marital status, and religion. These data showed that 29% of respondents had an advance directives and only 43% of all respondents wanted their primary care provider to discuss advance 29 directives during a routine office visit. Forty-four percent of the respondents who had advance directives wanted their primary care provider to have such a discussion and 43% of respondents who did not have directives, wanted the discussion. This study did not substantiate Orem's self- care theory of nursing. It implies that mature people who have developed the capabilities to care for themselves will want to continue to have some influence over their care in the event that they lose their ability to make competent decisions. With only 29% of respondents having advance directives and only 43% wanting their primary care provider to discuss them during a routine office visit, these people do not want to maintain influence over their care if they lose their ability to make competent decisions. Conclusions The 29% of the respondents in this study having to 18% reported advance directives is higher than the 15% random population groups. This in the literature for health-conscience nature could be attributed to the studied. The 43% of of the wellness center population discussion initiated by the primary respondents wanting a care provider is significantly lower 68% found in the literature. than the 65% to 30 This result cannot be explained by this researcher. But, it is clear that 57% of this particular sample did not want their primary care provider to initiate a discussion about advance directives. This research leads toward the recognition that many, or even most, patients will not want to have a discussion about an advance directive with their primary care provider. Being sensitive to this, it is perhaps best to let patients know that when and if they want to discuss advance directives, the provider of care will be open to that discussion. The researcher then looked at the responses based on demographic charateristics. In terms of respondents age groups, 56% of the 51-60 year olds and 86% of the 61-70 year olds already had written advance directives, These are subjects that are most likely to be seriously planning and then beginning retirement, and this was a health-conscience population overall. Another of Protestants had particular difference was that 42% Catholics did so. directives, whereas only 19% of the further research. This could be an interesting area for Recommendations 31 The researcher recommends that further research be done. More general populations should be used. The questionnaire should also be revised to include questions that clarify a subject s attitude about advance directives. Research is needed in several areas to answer some questions. One question is where and when discussions should be conducted, what should be included in these discussions , and what form of education about directives is most effective. A second question is still whether people want advance directives or not. Another recommendation is to leave educatioal pamplets on advance directives out where patients in primary care practices have easy access to them. Then when they feel ready to discuss them or ask questions, they can initiate the conversation. References 32 Advance Directive for Health Care Act, 20 Pa. Stat. Ann. § 5401-5414 (1992). Bader, D. ( 1 992) . Sharing responsibility at the edges of life. In K.W. Wildes, F. Abel, & J.C. Harvey (Eds.), Birth, suffering, and Death: Catholic perspectives at the edges of life (pp. 122-123). Norwell, MA: Kluwer Academic Publishers Group. Brett, A. (1991). Limitations of listing specific medical interventions in advance directives. Journal of the American Medical Association, 266, 825-828. Curtin, L. ( 1 996). First you suffer, then you die. Nursing Management, 27, 56-60. Danis, M., Southerland, M., & Garrett, J. (1991). A prospective study of advance directives for life-sustaining care. The New England Journal of Medicine, 324, 882-888. Davidson, K., Hackler, C., Caradine, D.,& McCord, R. (1989). Physicians’ attitudes on advance directives. Journal of the American Medical Association^ 262, 2415-2419. (1992). Outpatients' Edinger, W., & Smucker, D. directives. The Journal attitudes regarding advance of Family Practice, 35, 650-653. M., Stoeckle J., Ettelson L., Emanual, L., Barry, & Emanual, E. (1991). Advance directives 33 for medical care A case for greater use. The New England Journal of Medicine, 324, 889-895. Emanual, L. , & Emanual, E. ( 1 989) . The Medical directive: A new comprehensive advance care document. Journal of the American Medica1 Association, 261, 3288-3293. Hare, J., & Nelson, C. (1991). Will outpatients complete living wills? Journal of Internal Medicine t 41-46. Hickey, J. (1996). Primary Care: Improving health promotion and disease prevention. In J.V. Hickey, R.M. Ouimette, & S.L. Venegoni (Eds), Advanced practice nursing: Changing roles and clinical applications. (pp. 255-269) . Philadelphia: Lippincott. Johnson, C., Pfeifer, M., & McNutt, R. (1995). The discussion about advance directives. Archives of Internal Medicine, 155, 1025-1030. Johnson, R.A. & Justin, R.G. (1988). Documenting patient's end-of-life decisions. Nurse Practitioner, 13 41-52. R. (1991). LaPuma, J., Orentlicher, D., & Moss, Advance directives on admission: Clinical implications and analysis of the Patient Self-Determination Act of 1990. Journal of the American Medical Association, 266, 402-405. 34 Mahoney, J. (1984). Death and dying. In J. Mahoney (Ed.), Bioethics and Belief (pp. 36-51). London: Sheed & Ward Ltd. Orem, D. (1995). Nursing: Concepts of practice. St. Louis: Mosby-Year Book, Inc. Orentlicher, D- (1990). Advance Medical Directives. Journal of the American Medica1 Association, 263, 2365-2367. Saultz, J. (1990). Routine discussions of advance health care directives: Are we ready? The Journal of Family Practice, 31 , 653-655. Veatch, Robert M. (1982). Death and dying: The legislative options. In T.L. Beauchamp, & L. Walters (Eds.), Contemporary Issues in Bioethics (pp. 346-350). Belmont, CA: Wadsworth Publishing Co.. Virmani, B., Schneiderman, L., & Kaplan, R. ( 1 994 ). Relationship of advance directives to physician patient communication. Archives of Internal Medicine, 1 54, 909-913. White, M. , & Flechter J. (1991 ) . The Patient Self-Determination Act: On balance, more help than hinderance. Journal of the American 266 410-412. Medical Association, 35 Wolf, S. (1991). Sources of concern about the Patient Self-Determination Act. The New England Journal of Medicine, 325, 1666-1671. Appendixes HORI ZON hospital Appendix A S Ls T E M 37 Letter of Permission March 3, 1997 To Whom It May Concern: Deborah Gosnell has my permission to ask clients of the Good LIFE Center for Prevention and Rehabilitation to fill out a questionnaire for the study of advance directives. I understand that it is a requirement for her MSN degree at Edinboro University of Pennsylvania. I have discussed the search procedure and reviewed the research study with Ms. Gosnell and have determined that it will not interfere with operations at the Center. It is understood that a client’s decision whether or not to participate in this study will in no way affect his/her membership at the Center. If you should have any questions or concerns about Ms. Gosnell’s research at the Good LIFE Center for Prevention and Rehabilitation, please feel free to contact me at the following address: Sincerely, ■» Joseph C. Wright, C.S.C.S. Wellness Coordinator /mab cc: R. Spencer Good LIFE Center for Prevention and Rehabilitauon Greenville, PA A 412/588-3001 26 Conneaut Lake Road A <------ Appendix B Introduction Script My name is Debbie Gosnell. I am a student in Edinboro University's nurse practitioner program. I am doing a research study on advance directives which is a collective term including living wills and medical power of attorney. Would you be willing to answer a 6 item questionnaire to assist me in my study? This should only take a minute or two. Your answers will remain anonymous and will in no way effect your membership here. Please do not sign the questionnaire. There is an envelope on the desk by the door for you to leave the questionnaire in. 38 39 Appendix C Advance Directive Questionnaire Advance directive is a collective term including living wills and medical power of attorney. Please circle the appropriate answers. 1. Age: 1 8-1 9 51-60 20-30 61-70 31 -40 71-80 41-50 81 and above 2. Marital status: Single Married Divorced Widowed 3. Sex: male female 4. religion: Catholic Jewish Protestant other 5. Do you have an advance directive? yes no 4- . 40 6. Do you want your primary care provider (doctor, nurse practitioner, or physician assistant) to discuss advance directives with you during a routine office visit? yes no