Advance Directives In Family Practice

Einstein Quart. J. Biol. and Med. (2001) 18:67-72 Advance Directives In Family Practice Liora Adler and Heather Sere d Albert Einstein College of Medicine Department of Family Medicine Bronx, NY 10461 Abstract Background: Despite widely publicized court cases that have focused national attention on the importance of advance directives (ADs) and consequent initiatives such as the Patient Self Determination Act of 1991, there remains both low awareness and rate of completion of ADs. The purpose of this study was to assess awareness of ADs among adult patients presenting to family practices in the Bronx. Additionally, the percentage of patients with a written AD and the demographics of patients who have an AD were determined. Family practitioners attitudes about discussing ADs, as well as their methods of discussing them with patients, were also evaluated in this study. Methods: Forty-nine patients older than age 18 were interviewed during a one-month period at two family practices in the Bronx. Questions addressed demographics, self-reported health status, and other related topics. Additionally, patients were asked whether they have a permanent physician and whether the patient was informed about and/or signed an AD. A second survey, inquiring about the discussion of ADs with patients, was completed by seven family practitioners in the same practices. Results: Of the patients surveyed, 45% had received written information about ADs and 24% had signed ADs. Advanced age and perceived poor health were both associated with having an AD. Seventy-six percent of patients reported they did not have ADs because it was never discussed with them. While all of the providers believed that the primary care setting was the appropriate forum for the discussion of ADs, 86% reported that there was not enough time to address the issue with all of their patients and therefore chose to discuss ADs only with chronically and terminally ill patients. Conclusion: As there is a low level of awareness and completion rate of ADs in the Bronx, with the great majority of patients claiming that the topic was never even mentioned, physician initiative is required to increase AD completion rate. We propose that the discussion about and distribution of AD forms should be incorporated into family practice, despite the extra time that it necessitates. Introduction In April 1975, a 21-year-old woman named Karen Ann Quinlan stopped breathing for a significant period of time for unknown reasons. Consequently, she suffered severe brain damage, was reduced to a chronic persistent vegetative state, and was placed on a respirator. Since the doctors' collective opinion was that there was no hope for recovery, her parents petitioned to disconnect the respirator. Her doctors refused, claiming that Karen Ann's wishes were unknown to them, and the case lingered for years in the Supreme Court of New Jersey (Quinlan v. New Jersey, www.csulb.edu/~jvancamp/452_r6.html). This landmark Supreme Court case illustrates the need for a person s health care wishes to be known in the event of their incapacitation. Decision making by one person in the absence of another has long been employed in business, law, and politics. Early ship captains, before embarking on long voyages, bestowed decision making authority to a trusted individual to ensure that their affairs could be transacted while they were off at sea. While power of attorney, as this legal device is known, has been used for centuries in such situations, it has only been used in the health care forum for the past few decades. When a person loses the ability to make decisions due to mental incapacitation, he too requires a trustee in his stead. There are several ways for people to express their health care wishes in the event that they are no longer able to make their own health care decisions. These are collectively known as "advance directives" and include power of attorney, living will, and Do Not Resuscitate orders. A health care power of attorney, known in New York as a health care proxy, is a legal document that delegates authority for medical decision making to an agent or surrogate in the event that a patient becomes unable to make these decisions. Even though it seems logical for the next of kin to automatically assume decision making for patients, not all states clearly confer this authority. A living will is a formal statement of a person s beliefs, wishes, and intentions regarding medical intervention, particularly at the end of life. The Do Not Resuscitate order is a limited document that only addresses actions to be taken in the event of a cardiac arrest. These three devices of advance directives ensure the basic precept of ethical practice that patient autonomy is paramount even during incapacitation. In recent years, the ability of incapacitated patients to pass decisions regarding their health care on to others has become an increasingly important topic. In 1991, the Patient Self-Determination Act was passed, requiring all hospitals, nursing homes, health maintenance organizations, hospices, and health care companies that participate in Medicare or Medicaid to provide patients with written information on their rights concerning ADs under state and federal law. The new ruling places the responsibility of AD education upon a wide array of providers. However, since primary care physicians have

68 Einstein Quarterly Journal of Biology and Medicine Table 1: Demographic Data (n=49) Table 2: Statistical Analysis of Demographics Age: Returned AD Returned AD 18-40 30 (61%) > 41 19 (39%) Sex: Male 11 (22%) Female 38 (78%) Race: African-American 15 (31%) Hispanic 28 (57%) Other 6 (12%) Marital Status: Married 18 (37%) Single 31 (63%) Level of Education: High School/GED 32 (65%) Post High-School 17 (35%) Children: Yes 33 (67%) No 16 (33%) Variable Yes (n=12) No (n=37) P-Value Mean Age 51.8 39.3.034 Sex: Male 4 (36%) 7 (64%) NS Female 8 (21%) 30 (79%) Race: Hispanic 8 (29%) 20 (71%) NS Af.-Amer. 3 (20%) 12 (80%) Education: < H.S. 9 (28%) 23 (72%) NS Post-H.S. 3 (18%) 14 (82%) Marital Status: Married 4 (22%) 14 (78%) NS Not Married 8 (26%) 23 (74%) Health Status: Healthy 6 (17%) 29 (83%).059 Ill 6 (43%) 8 (57%) Parental Status: Children 9 (27%) 24 (73%) NS become the gatekeepers to all health care in America, they should be utilized first and foremost to address this issue. The question has now become: Are these health care centers distributing information appropriately and effectively to this end? The implementation and success of the Patient Self-Determination Act has been studied extensively in the past. By and large, they reveal very low percentages of patients who have ADs. Even in the most appropriate of settings, such as the emergency department, the number of patients arriving without ADs has consistently remained low. Ishihara et al. (1996) studied adult patients in a university hospital emergency room and found that 42% were uneducated about ADs, and a No Children 3 (19%) 13 (81%) mere 22% had signed one. With many such studies citing an approximate one quarter completion rate, improvement is certainly needed both in providing information about ADs and encouraging patients to sign them. Studies have also shown that there are distinctive characteristics associated with AD completers, such as advanced age, self-perception of health status as poor, having a "regular" physician (Llovera et al., 1997), and lower levels

Advance Directives in Family Practice 69 Table 3: Reasons for Not Signing Advance Directives It was never discussed with me 76% Felt they were too young or too healthy 16% I never got around to it 5% I don t want to think about being that sick 3% Preferred their doctor to make those decisions 0% Felt their family/friends would be able to make decisions for them without an AD 0% of education (Duffield and Podzamsky, 1996). Furthermore, Duffield and Podzamsky (1996) found that when physicians in one rural primary care setting discussed ADs with their patients, in addition to distributing written information, the AD completion rate climbed to 45%. While these and other such studies have explored ADs and some of the relevant questions, such issues have yet to be examined in an urban population such as the Bronx. Therefore, the research reported here is specific to an impoverished, minority-dominated population and was designed to determine: (1) how many patients have received information regarding ADs; (2) the number and demographic characteristics of patients in two diff e r e n t family practices in the Bronx who have signed ADs versus those who have not signed; (3) whether the discussion about ADs with a primary care physician increases the likelihood of patients signing ADs; (4) the reasons why patients do not sign ADs; and (5) physicians' attitudes and practices regarding discussing ADs with their patients. Methods Study Design: This study was performed in two parts. First, a sample of patients at two family practices in the Bronx who presented for either scheduled visits or walkin appointments were each asked a 13-question survey. Using the survey, we determined the patients' knowledge and utilization of ADs. We also determined factors that make patients more likely to have ADs, and barriers that prevent patients who have received information about ADs from signing one. The second part of the study was an interview of health care providers in the same family practices using a four-question survey. Their answers were used to assess the physicians' decision of whether or not to discuss ADs with their patients. Population and Setting: The study was performed in two family practice offices in the Bronx over a one-month period from December 1999 to January 2000. Both men and women over the age of 18 were interviewed. The population was predominantly Hispanic and African- American, most of whom had completed high school or obtained a GED. Subjects included patients who were married, single, and divorced/widowed, as well as those who had and did not have children. Most of the patients had permanent physicians within the practice. Patients were excluded if they were too ill to be surveyed, had language barriers that prevented the interview, or refused the interview. All health care providers were included in the physician survey. Survey Technique: Two third year-medical students conducted the interviews during 9:00 am to 5:00 pm shifts in their family medicine clerkship. The students filled out the thirteen-question patient surveys during the interv i e w. Items from the survey questionnaire included demographic information regarding age, sex, race, marital status, number of children, highest level of education completed, perceived health status, and whether or not the patient had a permanent physician. Patients were asked whether or not they received information about ADs, where they received this information, and whether or not they had signed one. We then asked those patients who had ADs whether or not they had discussed their options with their doctor, family, or friends. For those patients who had not signed an AD, we asked what factors had prevented them from doing so. We offered several choices including "other," and subsequently categorized the options. The physician survey questioned whether or not the provider discusses ADs with specific groups of patients. We further identified factors that prevented physicians from discussing ADs with their patients. Finally, the factors that contributed to the provider's decision of whether or not to discuss ADs were assessed. Data Analysis: The data obtained from this study were analyzed using the Statistical Package for the Social Sciences program. The demographic characteristics of the sample were summarized with descriptive statistics. The t-test, chi-square, and Fisher Exact tests were used to compare the characteristics of subjects who completed ADs versus those of subjects who did not. Significance was predetermined as a p-value < 0.05. Results Data analysis was completed for forty-nine patients, ranging in age from nineteen to ninty-one years, with an average age of forty-two years. There were eleven (22%) male subjects and thirty-eight (78%) female subjects (Table 1). Twenty-two (45%) of the patients surveyed had received written information about ADs. Of the surveyed patients, ten (21%) received this information in

70 Einstein Quarterly Journal of Biology and Medicine

Advance Directives in Family Practice 71 the hospital, eight (16%) during initial registration at their family practice office, one (2%) from their primary care physician, and three (6%) from their family or friends. Of the patients who received information about ADs, twelve (56%) went on to sign an AD. Among all of the surveyed patients, twelve (24%) had signed ADs. There was a nearly significant association (p=.059) between patients' perceived health status and having an AD (Table 2, Graph 1). The subjects described their health status as: generally healthy (43%), somewhat healthy (29%), slightly ill (16%), and very ill (12%). The rates for the two categories of "healthy" were not significantly different from each other; nor were the two categories of "ill" significantly different. Hence, for further analyses using perceived health status, the two healthy groups and the two ill groups were each collapsed to yield two rather than four health status variables. In addition, there was a significant association (p=.034) between advanced age and having an AD (Table 2, Graph 2). The mean age of patients who signed ADs was 51.8, whereas the mean of those without ADs was 39.3 (Table 2). The following variables were found to have no significant association with one's likelihood of signing an AD: sex, race, marital status, parental status, level of education, or having a permanent physician (Table 2). In addition to these demographics being independent of AD completion, there were no trends noted. We also investigated with whom patients discussed their ADs. Ten patients (83%) who signed ADs had discussed their choices with their primary care physician. Eleven patients (92%) had discussed their choices with their family or friends. The reasons given for not discussing their choices with either their physician, family, or friends were the following: "It never came up in conversation," "I never had the time," or "It was an emergent decision I made while by myself in the hospital." Table 3 lists several reasons why patients did not have ADs. Seventy-six percent of patients replied that the reason they had not signed an AD was that it was never discussed with them. Sixteen percent of patients without ADs felt they were too young or too healthy, 5% stated they never got around to it, while 3% responded that they did not want to think about their death. No patient gave as a reason for not signing an AD that their family or friends would be able to make decisions for them, nor did any patients prefer their doctor to make such decisions. The authors also surveyed seven health care providers at the same family practices in the Bronx. While 100% of the providers did not discuss ADs with all of their patients, 71% discussed ADs with chronic and/or terminally ill patients. Advanced age, independent of health status, also contributed to the physicians' decision on whether to discuss ADs. Despite the fact that all of the providers felt the primary care setting was the appropriate forum for the discussion of ADs, 86% cited that there was not enough time to address the issue in their o ffices. Physicians' discomfort was not listed as a major factor preventing the discussion of ADs, because only one physician stated that he was not comfortable discussing the topic. Discussion Awareness of Advance Directives In accordance with the Patient Self-Determination Act, the studied clinics distributed information about ADs to all patients at registration. Thus, 100% of the population, minus a few due to personnel error, received information regarding ADs. Interestingly, this study found that only 16% recall receiving this information. Furthermore, of the patients who recall receiving information, only 56% went on to sign ADs. This illustrates that the mere distribution of written materials, while still in accordance with the Patient Self-Determination Act, is insufficient in promoting awareness of ADs and encouraging their signing within this population. While this study did not directly assess the eff e c t i v e n e s s of verbal discussion on ADs, Duffield and Podzamsky (1996) found that the discussion of ADs in the outpatient setting significantly increased the number of completed ADs. Completion of Advance Directives While the 24% AD completion rate found in this study seems low, this rate is similar to completion rates conducted in emergency departments, a setting that involves older and more ill patients (Llovera et al., 1997, 1999). As these percentages are similar across different populations, demographics do not seem to play a role in the signing of ADs. Our findings support this conclusion in that sex, race, level of education, marital status, and parental status are not significant predictors of signing an AD. In contrast, we found advanced age and perceived health status to be significant factors in AD completion. We understand this association to indicate that older and ill patients are more likely to need ADs in the near future and thus complete them more readily. The above-mentioned studies found parameters such as age and race to be significantly associated with AD completion, while this study did not find a difference. This could be attributed to limitations in the studied population. A small sample size (n=49), a predominantly Hispanic and African-American community, and few patients who completed ADs may have limited the statistical analysis. Discussing Advance Directives This study found 83% of patients who signed ADs had discussed their decision with their family practitioner. In contrast, only 48% of North Shore Hospital emergency department patients had discussed their ADs with their

72 Einstein Quarterly Journal of Biology and Medicine physicians (Llovera et al., 1997). This difference may be due to population characteristics. The North Shore study involved a population that was more educated, greater in mean age, and more predominantly male. Although this study did not find statistically significant differences between the AD completion rate and the level of education within this population, it is believed that the difference in level of education between this population and that of North Shore plays the most significant role in the discussion of ADs. Perhaps patients of lesser education are more reliant on their physicians' guidance to make health care-related decisions and therefore more often discuss ADs with their providers. Therefore, physicians working with lesser-educated populations should recognize the need for extra support and encouragement when their patients face decisions related to their end-of-life care. Barriers to Signing Advance Directives An overwhelming majority (76%) of the patients in this study stated they had not signed an AD because "it was never discussed with me." This raises the question of whose responsibility it is to initiate the discussion about ADs. Johnston and Pfeifer (1995) found the majority of patients and physicians agreed that it is the responsibility of the physician to initiate the discussion. As such, increased physician willingness to discuss ADs will boost completion rates. Therefore, we propose further study to evaluate when, where, and how this could best be accomplished. Advance Directives in the Primary Care Setting It is the responsibility of the family practitioner to discuss many health care-related issues with their patients, including ADs. The physicians in this study consistently reported discussing ADs with their chronically and/or terminally ill patients (71%), but never discussed it with their other patients. While this is a step in the right direction, the authors feel this discussion should be expanded to include all patients. Although the probability that the young and healthy will become incapacitated is low, the benefits of having an AD could be significant should this occur, as in the case of Karen Ann Quinlan. The practical implementation of such a discussion has been reported to be difficult due to time constraints. This study did not examine the length of time needed to facilitate such discussions, but one study found that the discussion and completion of forms in the office could be done in less than 15 minutes (Emanuel and Barry, 1991). The physicians surveyed felt that the discussion was not time-consuming and did not interfere with the usual office schedule. The authors of this study agree that the discussion should be possible with limited time and suggest further research on quantity and quality of time required for such a discussion. Conclusion This study found a low level of awareness regarding ADs in two family practices in the Bronx, despite the widespread distribution of written information. Therefore, the distribution of written information at initial registration in family practices in the Bronx is a somewhat ineffective means of increasing awareness. The studied population has a low AD completion rate, which is consistent with varying demographics. Although self-perceived ill health and advanced age were the most significant predictors of AD completion, special effort should be made to target all patients, specifically those that are young and healthy. As the number one barrier to AD completion was the lack of discussion, physician-initiated discussion is likely to substantially increase the completion rate. However, physicians find time constraints their primary limitation to accomplishing this goal. Thus, efficient methods of discussion in family practice are required to overcome these constraints. Further studies to address this concern are proposed. Acknowledgments Special thanks to Michael Mulvihill, Ph.D. for his guidance using his expansive knowledge about advance directives and to John Paul Sanchez, M.P.H. for his expert advice and assistance with the statistical analysis. We greatly appreciate their help. References Duffield, P. and Podzamsky, J. (1996) The Completion of Advance Directives in Primary Care. J. Family Practice 42:378-383. Emanuel, L.L. and Barry, M.J. (1991) Advance Directives for Medical Care- A Case For Greater Use. New Eng. J. Med. 324:889-895. Ishihara, K.K., Wrenn, K., and Wright, S.W. (1996) Advance Directives in the Emergency Department: Too Few, Too Late. Acad. Emerg. Med. 3 :5 0-5 3. Johnston, S.C. and Pfeifer, M.P. (1995) The Discussion About Advance Directives: Patient and Physician Opinions Regarding When and How It Should Be Conducted. Arch. Intern. Med. 155:1025-1030. Llovera, I., Mandel, F.S., and Ryan, J.G. (1997) Are Emergency Department Patients Thinking About Advance Directives? Acad. Emerg. Med. 4 :9 7 6-9 8 0. Llovera, I., Ward, M.F., and Ryan, J.G. (1999) Why Don't Emergency Departments Patients Have Advance Directives? Acad. Emerg. Med. 6:1054-1060. Quinlan v. New Jersey. Law, Philosophy and the Humanities Course, California State University in Long Beach, retrieved October 2001, www.csulb.edu/~jvancamp/452_r6.html. Sanders, A.B. (1999) Advance Directives. Emerg. Med. Clin. North Am. 17:519-527.