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Advance Care Planning and Health Care Preferences of Community-Dwelling Elders: The Framingham Heart Study

¹ Division of General Medicine and Primary Care, Department of Medicine, Harvard Medical School, Beth Israel Deaconess Medical Center, Boston, Massachusetts.
² National Heart, Lung, and Blood Institute's Framingham Heart Study, Framingham, Massachusetts.
³ Department of Mathematics and Statistics, Statistical Consulting Unit, Boston University, Massachusetts.
⁴ Department of Neurology and ⁵ Section of General Internal Medicine, Department of Medicine, Boston University School of Medicine, Boston Medical Center, Massachusetts.

Address correspondence to Ellen P. McCarthy, PhD, Division of General Medicine and Primary Care, Department of Medicine, Beth Israel Deaconess Medical Center, 1309 Beacon Street, Suite 220, Brookline, MA 02446. E-mail: emccarth{at}bidmc.harvard.edu

	Abstract

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Objective. The study objective was to describe self-reported advance care planning, health care preferences, use of advance directives, and health perceptions in a very elderly community-dwelling sample.

Methods. We interviewed surviving participants of the original cohort of the Framingham Heart Study who were cognitively intact and attended a routine research examination between February 2004 and October 2005. Participants were queried about discussions about end-of-life care, preferences for care, documentation of advance directives, and health perceptions.

Results. Among 220 community-dwelling respondents, 67% were women with a mean age of 88 years (range 84–100 years). Overall, 69% discussed their wishes for medical care at the end of life with someone, but only 17% discussed their wishes with a physician or health care provider. Two thirds had a health care proxy, 55% had a living will, and 41% had both. Most (80%) respondents preferred comfort care over life-extending care, and 71% preferred to die at home; however, substantially fewer respondents said they would rather die than receive specific life-prolonging interventions (chronic ventilator [63%] or feeding tube [64%]). Many were willing to endure distressing health states, with fewer than half indicating that they would rather die than live out their life in a great deal of pain (46%) or be confused and/or forgetful (45%) all of the time.

Conclusions. Although the vast majority of very elderly community-dwellers in this sample appear to prefer comfort measures at the end of life, many said they were willing to endure specific life-prolonging interventions and distressing health states to avoid death. Our results highlight the need for physicians to better understand patients' preferences and goals of care to help them make informed decisions at the end of life.

Key Words: Advance directives • Geriatrics • End-of-life care • Patient-centered care • Decision making

We surveyed surviving community-dwelling participants of the original cohort of the Framingham Heart Study (FHS), all of whom are older than 80 years, about advance care planning, use of advance directives, and preferences for health care. The FHS is a natural place to further our understanding of very elderly adults who have been followed closely for almost 60 years, and who are now approaching the end of their natural life span. The original cohort participants have been followed extensively through adulthood to collect detailed medical and social information, with very little loss to follow-up. In this context, we examined the extent to which these very elderly community-dwelling adults report advance care planning and describe their preferences for care and reported use of advance directives, and we examined how these factors relate to social support, illness burden, physical functioning, cognitive functioning, depressive symptoms, health perceptions, and previous health care use.

	METHODS

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Data Collection
The FHS is a prospective observational cohort study that began in 1948 to investigate risk factors for cardiovascular disease and other health conditions. The original cohort consisted of 5209 participants (55% women) 30–62 years old at entry from Framingham, Massachusetts (12). Since study inception, participants have returned every 2 years for a routine research examination, which includes a physician-administered medical history, a medical assessment, and questionnaires administered by trained interviewers. Written informed consent was obtained from participants, and the Institutional Review Board at Boston Medical Center approved the examination content.

Study Sample
Surviving original cohort participants who attended their 28th biennial examination were eligible for this study if they were cognitively intact and community-dwelling. All examinations occurred between February 4, 2004 and October 26, 2005. Overall, 253 community-dwelling participants attended examination 28. Seventeen participants fulfilled criteria for significant cognitive impairment or dementia after review by the FHS Dementia Study investigators (13), and therefore were ineligible to answer questions related to advance care planning and health care preferences. Of the 236 eligible participants, 220 (93%) agreed to answer these questions. Overall, 60% of examinations for eligible participants occurred in the FHS clinic. The remainder occurred at off-site locations (e.g., private residences) often because of distance.

Advance Care Planning and Care Preferences
Twelve items were administered to assess advance care planning and preferences for care; 11 of these were administered in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments/Hospitalized Elderly Longitudinal Project (SUPPORT/HELP) Project and used in several published reports (14–16). Participants were asked whether they had talked to anyone about their wishes for medical care toward the end of life; had filled out a living will; and had completed a health care proxy. Those reporting a health care proxy were asked to identify that individual. Participants were asked whether they prefer a treatment plan focused on extending life as much as possible, even if it meant more pain and discomfort, or one focused on relieving pain and discomfort as much as possible, even if it meant not living as long. Participants reported their willingness to endure certain health states including whether they would rather die. The hypothetical health states included being (i) in a great deal of pain all the time even with medications, (ii) attached to a ventilator or respirator all the time, (iii) fed through a tube all the time, (iv) unconscious or in a coma all the time, and (v) confused or forgetting all the time. Lastly, participants were asked where they would prefer to die.

Participants were queried about their perceptions of their own longevity and future physical functioning, factors that may influence advance care planning and care preferences. Specifically, they were asked, "What do you think the chances are that you would live 12 months or more?" and "What are the chances that you will be able to take care of yourself 12 months from now?"

Because of concerns about participant burden and the potential emotional content of the questions, the interviewer assessed participants' willingness to respond to the questions and external behavior immediately following these questions. Interviewers documented whether the participant (i) stopped the interview, (ii) was visibly upset or bothered by any question(s), and/or (iii) had difficulty understanding any question(s).

Potential Correlates
Factors previously shown to correlate with advance care planning and preferences for care in seriously ill populations are collected routinely during biennial examinations. Sociodemographic characteristics included age, sex, place of residence, and education (obtained from baseline interview). Social support was assessed by marital status, living situation, and two Berkman (17) Social Network questionnaire items, which assessed whether participants had someone to listen to them and provide emotional support.

Perceived health was assessed by "In general, how is your health now?" Self-reported physical functioning was assessed by ability to perform activities of daily living (ADL) (eating, dressing, bathing, transferring, toileting, and walking about 50 yards) without human assistance (18) and ability to walk one-half mile without help (19). Cognitive functioning was assessed using the Mini-Mental State Examination (MMSE; scores 24 indicate no cognitive impairment) (20). Presence of depressive symptoms was assessed using the Center for Epidemiologic Studies Depression Scale (CES-D; scores 16 indicate significant depressive symptoms) (21). Use of health care services included hospitalizations, illness visits to doctor, check-ups by doctor, and nursing home or skilled nursing facility admission in previous 2 years. Comorbid illness was assessed by a documented history of diabetes, coronary heart disease, stroke, congestive heart failure, intermittent claudication, cancer, and/or hip fracture. These conditions were documented by chart review and validated by a panel of FHS investigators. Diabetes was defined by a causal blood sugar >200 mg/dL or self-reported use of oral hypoglycemic medications or insulin.

Statistical Analysis
All statistical analyses used SAS (version 9.1; SAS Institute, Cary, NC). We conducted bivariable analyses to describe the sample and identify differences in advance care planning and health care preferences between men and women, and to identify factors associated with self-reported use of advance directives (having a health care proxy and living will). We used multivariable logistic regression to identify factors independently associated with advanced directives after adjusting for age and sex. Because advanced directives were relatively common (>10%), we derived adjusted prevalence ratios (aPR) and 95% confidence intervals (CI) using a log binomial regression model (22).

	RESULTS

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Among the 220 community-dwelling respondents, 3 (1.3%) stopped before completing questions on advance care planning and preferences, and 12 (5.5%) appeared upset or bothered by one or more questions. The average age of respondents was 88 years, 67% were women, 64% were widowed, three-quarters achieved a high school education or higher, and nearly all reported a routine checkup within the past 2 years. Compared with men, women were less often married and more often living alone (Table 1). Men were more likely to have one or more comorbid conditions and to have been hospitalized than were women.

View larger version (15K): [in this window] [in a new window]   Figure 1. Preferences for future health states among community-dwelling elders (n = 220)

	DISCUSSION

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There are several possible clinically relevant explanations for this finding. First, the framing of the questions about goals of care and hypothetical health states is very important. Patients likely do not fully understand what comfort care entails or the implications of specific life-prolonging interventions, and may not view these concepts as mutually exclusive. Moreover, patients' lack of knowledge and experience with specific medical interventions and hypothetical scenarios has been shown to cloud the relationship between goals of care and preferences for life-prolonging interventions (24). A recent study found that using video images to depict a patient living with advanced dementia had a significant impact on individuals' preferences for care by improving their understanding and ability to imagine themselves having advanced dementia (25). Prior to seeing the video, 50% of participants preferred comfort care and 21% preferred life-prolonging care. However, after seeing the video, almost 90% indicated they desired comfort care and none chose life-prolonging care. In our study, most respondents chose death over living the rest of their life in a coma or unconscious, possibly because this is a tangible state that is more readily understood. Finally, qualitative data suggest that, when faced with hypothetical choices, patients place more emphasis on the outcome of an intervention (in this instance avoiding death) rather than the intervention itself (26). Nevertheless, given the inconsistency observed between reported goals of care and preferences for life-prolonging interventions and distressing health states, it is concerning that few of these very elderly respondents have discussed their wishes for end-of-life care with a health care provider.

More than 15 years ago, Lo and colleagues (27) recommended that physicians talk to their elderly patients about their wishes for care. Most physicians believe that it is their professional responsibility to help patients with advance care planning, with more than 80% of physicians reporting that they should initiate end-of-life discussions with patients (28). Therefore, it is troubling that, in this very elderly cohort where nearly all respondents reported having a recent routine check-up, only 12% of all respondents reported discussing their preferences with a physician or health care provider. Yet these findings are consistent with studies suggesting that discussions with physicians about end-of-life care were uncommon (10,11,29). We did find it encouraging that the vast majority of respondents had someone to provide emotional support, help make difficult decisions, and listen to them, and many reported that they had discussed their wishes for care with family members. Nonetheless, our findings highlight the need for physicians to have these discussions with very elderly patients to help their patients make informed decisions rooted in their values.

Our findings were remarkably consistent with those of seriously ill hospitalized patients 80 years old or older enrolled in HELP (15). Using the same set of questions asked in our study, HELP found that 73%–78% of very elderly adults preferred comfort care within 3–6 months prior to death. HELP also found that fewer patients would choose death rather than endure a lifetime of pain (48%) and confusion (35%) or be attached to a ventilator (70%) or feeding tube (50%) (15).

Few studies have actually examined advance care planning among community-dwelling elders (8–11). We found that two thirds of very elderly community-dwelling adults reported having a health care proxy, and about half had a living will. In contrast, a study of managed care patients 80 years old or older found that only 27% had been asked about their end-of-life preferences and that only 46% had advance directives documented in their chart (10). In a multiethnic sample of younger community-dwelling elders, Morrison and Meier (8) found that only 35% had a health care proxy.

There is some evidence that discussions about end-of-life care are helpful to patients. Patients who discussed end-of-life care with their physicians reported less fear and anxiety, a better understanding of their options for care, and a greater ability to make decisions and influence their medical care (30,31). Data suggest that completion of advance directives were associated with greater satisfaction (30,32), greater hospice use, and fewer concerns about communication (33). Despite national trends toward shared decision making, one third of the general adult population moderately or strongly agreed that they would prefer to leave decision making to their physician, with older adults and those in poorer health less likely to want to participate in decision making (34,35). Moreover, few desire tight control over medical decisions if unable to make their own decisions (36), and many community-dwelling elders trust that physicians would make the right care decisions should they become very sick (8).

Because many very elderly patients are clinically complex, advance care planning should not wait until patients face an acute medical crisis such as being hospitalized with life-threatening illness (4,7). Studies show that patients are open and willing to discuss advance care planning, but generally they would prefer that their physician raise the topic (8,37). Even though most physicians believe it is their responsibility to have end-of-life discussions (28), some may be reluctant because a potentially time-consuming discussion may take away from other pressing clinical matters (38). Ideally, providers should begin talking to their elderly patients about advance care planning early and have ongoing discussions, especially with changes in health status (3). This will introduce concepts of end-of-life care while elderly patients are able to participate in the decision-making process and allow patients to re-evaluate their values as they age or experience changes in their clinical situation.

Advance directives assume that patients can anticipate their preferences for care for hypothetical future heath states (8,39). However, there is little evidence that decisions patients make when relatively healthy can predict treatment choices when death is imminent (39). Although the vast majority of very elderly participants in our study could state their health care preferences and were not emotionally upset by the end-of-life content, some had difficulty. We found that higher education was strongly associated with advanced directives in the very elderly participants. Because an estimated 27% of older adults have below basic document literacy (40), health literacy may be an important and unrecognized barrier to completing advance directives. Moreover, treatment preferences appear to be only moderately stable over time, but preferences to refuse life-prolonging treatment tend to be more stable than preferences to receive life-prolonging treatment (41). Given the advanced age of our sample and that the majority preferred comfort measures, it is likely that their goals of care would be relatively stable, but it is unclear how their preferences for specific life-prolonging interventions and distressing health states would change.

Our findings should be interpreted within the context of important limitations. These findings reflect views of non-Hispanic white community-dwelling elders, most of whom still reside in the Northeast, and may not be representative of elders from racial and ethnic minority groups or other geographic regions. In particular, studies have consistently shown that African-American patients are more likely to undergo aggressive care, to prefer life-sustaining treatment, to want cardiopulmonary resuscitation, and to die in a hospital (11,32,42–48). African Americans are less likely to have discussions about life-sustaining treatments with physicians (49), and are much less accepting of advanced care planning. African Americans and Hispanic Americans have advanced directives less often than their white counterparts do (44,50–53). In addition, frail older ethnic minorities are less likely to self-express their own health care choices than are their white counterparts (54). Next, we were unable to look in-depth at any one topic or explore reasons why few very elderly community-dwelling adults discuss wishes for care with their providers. Finally, we relied on participants' self-report. It is possible that providers have addressed end-of-life issues with some participants, but participants did not recall or perceived the discussion differently. Although such information is subject to recall bias and participants' perceptions, perhaps it speaks to the quality of the patient–provider communication.

Summary
Many very elderly adults still reside in community settings and are capable of making treatment decisions near the end of life. Most elders were able to state their preferences, and few appeared upset or bothered when asked about end-of-life care. Although the majority of participants prefer comfort measures at the end of life, many indicated that they would endure life-prolonging interventions and distressing health states to avoid death. The reasons for this discrepancy are likely to be multifaceted. Yet, very few respondents reported having discussed their preferences with their providers. Future research should develop and test interventions to improve rates of end-of-life discussions in very elderly community-dwelling populations. These efforts should involve family members whenever possible. Discussions among the physician–patient–family triad may facilitate unified decision making that is informed and rooted in patients' values. Increased family involvement may help bridge outpatient and inpatient settings so that patients receive care that is consistent with their preferences.

	Acknowledgments

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We thank Sidney and Dorothy Stogel for providing funding for this study, and we acknowledge the support of Richard A. Parker, MD, and Russell S. Phillips, MD. The National Heart, Lung, and Blood Institute's (NHLBI) Framingham Heart Study is supported by contract number N01-HC-25195. Dr. Kelly-Hayes was supported by grants from the National Institute on Aging (R01 AG08122, Epidemiology of Dementia in the Framingham Study) and the National Institute of Neurological Disorders and Stroke (R01 NS17950, Precursors of Stroke Incidence and Prognosis). The funding agency had no role in the design, methods, subject recruitment, data collection, analysis or preparation of the manuscript.

This article was presented in part at the annual meeting of the Society of General Internal Medicine, New Orleans, Louisiana, May 2005.

	Footnotes

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Decision Editor: Darryl Wieland, PhD, MPH

Received July 25, 2007

Accepted January 22, 2008

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