JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 10, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.0033
Family Structure, Experiences with End-of-Life Decision Making, and Who Asked About Advance Directives Impacts Advance Directive Completion Rates Lauren J. Van Scoy, MD,3 Judie Howrylak, MD, PhD,3 Anhthu Nguyen, MD,1 Melodie Chen, MD,1 and Michael Sherman, MD 1,2
Abstract
Background: Advance directives are an important but underutilized resource. Reasons for this underutilization need to be determined. Objective: We investigated factors associated with completion of advance directives among inpatients. Design: We conducted prospective, structured interviews on family structure, health care, disease, and end-oflife experiences. We compared those with completed advance directives and those without. Setting/Subjects: We interviewed 130 inpatients in an urban university hospital. Measurements: We used bivariate analysis and logistic regression to identify characteristics of patients with living wills and health care proxies versus patients without them. Results: Twenty-one percent of patients had a living will and 35% had a health care proxy. Patients with completed living wills were older ( p £ 0.0046), had more comorbidities ( p = 0.018), were widowed ( p = 0.02), and were more often admitted with chronic disease ( p = 0.009) compared to those without living wills. Patients with health care proxies were older ( p < 0.001), had religious affiliations ( p = 0.04), more children ( p = 0.03), and more often widowed ( p £ 0.001) than those without health care proxies. Patients were 10.8 times (95% confidence interval [CI] 4.59–25.3), 46.5 times (95% CI 15.1–139.4), and 68.6 times (95% CI 13.0–361.3) more likely to complete a living will when asked by medical staff, legal staff, or family and friends, respectively, than those not asked. Patients with health care proxies were 1.68 times (95% CI 0.81–3.47), 4.34 times (95% CI 1.50–12.6), and 18.0 times (95% CI 2.03–158.8) more likely to have been asked by the same groups. Patients with experience in end-of-life decision-making were 2.54 times more likely to possess a living will (95%CI 1.01–6.42) and 3.53 times more likely to possess a health care proxy (95% CI 1.51–8.25) than those without experiences. Conclusions: Having been asked about advance directives by medical staff, legal staff, or family and friends increases the likelihood that patients will possess an advance directive. Those with prior experience with endof-life decision-making are more likely to possess an advance directive. Family structure and health care utilization also impacts possession of advance directives. Introduction
A
dvance directives are well known to be an underutilized medical resource. Despite the implementation of the Patient Self-Determination Act (PSDA) of 1990, which requires hospitals to ask patients whether they have completed advance directives, surprisingly few patients possess these documents. Consistently low rates of advance directive
completion across a variety of settings have been reported, ranging from 5% to 39%.1–8 For example, researchers found that among hospitalized patients with cancer, only 33% possessed a formal advance directive.2 In a study of more than 1100 nursing home residents, only 30% of patients possessed a living will or health care proxy.5 We recently found that only 17% of patients in our intensive care unit (ICU) possessed advance directives.8
1
Department of General Internal Medicine, 2Division of Pulmonary, Critical Care and Sleep Medicine, Drexel University College of Medicine, Philadelphia, Pennsylvania. 3 Department of Medicine, Division of Pulmonary, Allergy, and Critical Care, Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania. Accepted May 29, 2014.
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These consistently low rates of advance directive completion have generated tremendous interest in identifying factors that might account for these findings. Factors previously reported to impact completion of advance directives include demographics such as age,4–7,9 race,2,5,6,9,10 and gender.9,10 Religion and educational status may also play a role.9 Few studies have investigated the impact a patient’s disease type and experience in the health care system might have upon whether they choose to complete advance directives. We hypothesized that frequent interactions with the health care system, chronic and comorbid diseases, and experiences with end-of-life issues would increase advance directive completion. For the purposes of this article, we define a living will as a written instruction that limits care at the end-of-life. We use the term health care proxy to represent a formally documented health care proxy or agent or durable power of attorney for health care. The term advance directive is used in this article to describe either a living will or health care proxy. Methods Patients and setting
We interviewed 130 inpatients in an urban university hospital. The hospital is set in a northeast environment and serves an urban and nearby suburban population with diverse racial, socioeconomic, and cultural backgrounds. Thirty-six percent of the patients admitted to this hospital are white, 59% black, and 5% of other backgrounds. Approximately 47% of the patients are male and 53% are female. The hospital is nonspecialized, covering a wide variety of medical and surgical subspecialties. Based on a 6month analysis of over 9800 billing codes for the hospital, approximately 65% of patients are admitted to a medical service, 16% to an obstetrics/gynecology service, 9% to a surgical service, 7% to the neurology service, and 3% to an oncology service. Data collection
We collected several broad categories of data: patient demographics, health care utilization, disease entity, and experiences with death, dying, or end-of-life decision-making. Data were collected during one-on-one interviews and verified by chart review. Patients were chosen for interviews based on floor and bed number. The interviewers, who were internal medicine resident physicians, entered rooms at random on each hospital floor during interview days chosen based on the interviewers’ individual schedules. Each interviewer entered approximately five rooms per floor per day. Interviewers did not have clinical relationships with the patients. Patients were excluded from the study if the bed was vacant at the time the interviewer entered the room, they were less than 18 years of age, required an intensive level of care, or were unable to speak English, communicate with the interviewer, or provide informed consent for any reason. Once informed consent was obtained, interviewers used a scripted survey to collect data regarding the presence of living wills or health care proxies, patient demographics, health care utilization, and experiences with death and dying. Health care utilization and disease characteristics included information about comorbidities, diagnoses, insurance status, chronicity
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of disease, presence of cancer, smoking history, visits to the primary care physician, and hospitalizations. A disease was categorized as acute versus chronic based on chart review by the physician interviewer. Acute disease was defined as a newly diagnosed illness and chronic disease as a progression or exacerbation of an ongoing underlying illness. Patients were asked if they had ever had previous discussions about advance directives and if so, who had initiated the conversation (e.g., physician, attorney, family, etc.). We gathered information about experiences with death and dying including having witnessed a cardiopulmonary arrest and having made end-of-life decisions for oneself or others. After the interview, medical charts were reviewed by the interviewer to confirm the information gathered and collect any additional data not provided by the patient. Statistical analysis
We performed a bivariate analysis using Wilcoxon ranksum and Fisher’s exact tests to make comparisons between demographic and clinical characteristics of study subjects with and without living wills and health care proxies. We calculated counts and percentages or arithmetic means and standard deviations for all variables measured. We conducted unadjusted logistic regression analysis to evaluate the association of potential covariates with possession of advance directives. We next conducted a multivariable analysis considering potential covariates. In the initial multivariable model, we included covariates that had a p value < 0.10 in the univariate analysis. We used backward elimination techniques for variable reduction, and retained covariates when they were significant or when removal caused a greater than 10% change in the estimate for possession of a living will or health care proxy. A biostatistician performed the statistical analysis. We obtained approval from the Institutional Review Board prior to subject recruitment. Results Demographics and advance directives
We interviewed a total of 130 inpatients. Patient demographics, disease characteristics, and prevalence of living wills and health care proxies are shown in Table 1. Survey participants were mostly female (57%) and black (65%). Sixty-four percent of patients were admitted for nononcologic, medical diagnoses (Table 1). Our study had an equal mix of acute and chronic disease processes as the reason patients’ admission to the hospital. Eighty-two percent of our population had attained educational status of high school or less and 95% percent had health insurance. Ninety percent of patients reported a religious affiliation. Bivariate analysis
Table 2 shows the results of the bivariate analysis comparing those with and without a living will. There was no difference in race or gender in patients who possessed a living will. Older patients were more likely to possess a living will ( p = 0.0046). Patients with living wills had more comorbidities than those without living wills ( p = 0.018). Measures of health care utilization such as weeks since last primary care physician (PCP) visit and number of admissions in the last year did not impact possession of living wills. Of our
ADVANCE DIRECTIVES IN AN ACUTE HOSPITAL SETTING
Table 1. Patient Demographics and Characteristics Age Mean years (SD) Race n, (%) African American n, (%) Caucasian Presence of advance directive n, (%) With living will n, (%) Without living will n, (%) With proxy n, (%) Without proxy n, (%) With both Educational status n, (%) High school or Less n, (%) College or higher Currently married n, (%) Yes n, (%) No Insurance n, (%) Yes n, (%) No Current smoker n, (%) Yes n, (%) No Seen a cardiopulmonary arrest n, (%) Yes n, (%) No Gender n, (%) Male n, (%) Female Disease entity n, (%) Surgical n, (%) Medical (nononcologic) n, (%) Oncologic n, (%) OB/Gyn n, (%) Neurologic Religious affiliation n, (%) Yes n, (%) No Currently employed n, (%) Yes n, (%) No Diagnosed with cancer n, (%) Yes n, (%) No Disease process n, (%) Acute n, (%) Chronic n, (%) Elective Hospitalization
55 (16) 84 (65) 46 (35) 27 103 45 85 23
(21) (79) (35) (65) (18)
107 (82) 23 (18) 47 (36) 83 (64) 124 (95) 6 (5) 30 (23) 100 (77) 48 (37) 82 (63) 56 (43) 74 (57) 25 83 9 5 8
(19) (64) (7) (4) (6)
117 (90) 13 (10) 59 (45) 71 (55) 26 (20) 104 (80) 62 (48) 62 (48) 6 (4)
SD, standard deviation.
hospitalized patients with a living will, 74% were admitted for a chronic condition, whereas those without living wills were equally likely to have an acute or chronic condition as the reason for their admission ( p = 0.009). Admission with an acute disease process did not show similar proportions. Most patients in our study were married, however, the proportion of those with a living will who were widowed was significantly higher than those who did not have a living will ( p = 0.02). Experience with death and dying of a loved one or
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witnessing a cardiopulmonary arrest did not affect possession a living will. The results of the bivariate analysis for patients with and without a health care proxy are displayed in Table 3. Older patients were more likely to possess a health care proxy ( p £ 0.001) and there was no difference in race or gender. Those with a health care proxy were more likely to report a religious affiliation than those without a health care proxy ( p = 0.04). Measures of health care utilization such as weeks since last PCP visit and number of admissions in the last year did not impact health care proxy possession. Patients with a health care proxy had more children than those without one ( p = 0.03). Those with health care proxies were four times more likely to be widowed than those without a health care proxy. The majority of patients without health care proxies were single ( p < 0.001). Among those who had a health care proxy, 35.6% had made end-of-life decisions for another while only 15.3% had done so in the group without a health care proxy ( p = 0.01). Experience with death and dying of a loved one or witnessing a cardiopulmonary arrest did not affect possession a health care proxy. Logistic regression analysis
The results of the logistic regression analysis adjusting for age, race, and marital status are displayed in Table 4. Patients who were asked about advance directives by medical staff were 10.8 times more likely to complete a living will (95% confidence interval [CI] 4.59–25.3) and 1.68 times more likely to complete a health care proxy (95% CI 0.81–3.47) than those who were not asked. Those asked by legal staff were 46.5 times more likely to have a living will (95% CI 15.5–139.4) and 4.34 times more likely to have a health care proxy (95% CI 1.5– 12.6). Those asked by family or friends were 68.6 times more likely to have a living will (95% CI 13.0–361.3) and 18 times more likely to have a health care proxy (95% CI 2.03–158.8). Patients who had experience with end-of-life decisionmaking were 2.54 times more likely to possess a living will than those who had not made end-of-life decisions (Table 4, 95% CI 1.01–6.42). Similarly, patients with decision-making experiences were 3.53 times more likely to possess a health care proxy (95% CI 1.51–8.25). Discussion
In this prospective study of non-ICU inpatients in an urban university teaching hospital, the presence of advance directives was affected by elements of a patients’ demographics, family structure, disease process and experiences with endof-life decision-making. In our population, eight factors impacted possession of advance directives: age; religious affiliation; number of children marital status; number of comorbidities; admission with a chronic disease; having made end-of-life decisions for someone else; and who asked the patient about advance directives. We found differences in factors that are associated with completion of a living will as opposed to a health care proxy in our study. Patient demographics
It is well established that patient age is associated with higher rates of advance directive completion.5,9,11 Our study
Table 2. Bivariate Analysis of the Effects of Demographic and Experiential Variables on the Possession of a Living Will
Age Gender Male Female Race White Black Asian Hispanic Religious Yes No Number of comorbidities Presence of cancer Yes No Unknown Last visit to PCP (weeks ago) Insurance Medicaid Medicare Private Uninsured Missing Admitting diagnosis Acute Chronic Elective Experience with death and dying Yes No Experience with end-of-life decision-making Yes No Number of children Who asked about advanced directive Medical staff Legal staff Family/friend Not asked Education High school or less More than high school Marital status Married Single Divorced Widowed Unknown Smoking status Yes No Number of admission in past year Observed cardiopulmonary arrest Yes No Unknown
Living will n (%) or mean (SD)
No living will n (%) or mean (SD)
63.3 (14.8)
52.9 (16.1)
10 (37.0) 17 (63.0)
46 (44.7) 57 (55.3)
13 14 0 0
32 70 0 1
p value 0.0046 0.52 0.29
(48.1) (51.9) (0) (0)
(31.1) (68.0) (0) (1.0) 1.0
25 (92.6) 2 (7.4) 4.2 (1.6)
92 (89.3) 11 (10.7) 3.5 (2.0)
7 20 0 7.0
(25.9) (74.1) (0) (12.0)
19 81 3 8.3
(18.4) (78.6) (2.9) (9.9)
5 8 11 1 2
(18.5) (29.6) (40.7) (3.7) (7.4)
20 17 58 6 2
(19.4) (16.5) (56.3) (5.8) (1.9)
0.018 0.43
0.13 0.40
0.0090 7 (25.9) 20 (74.1) 0 (0)
55 (53.3) 42 (40.8) 6 (5.8)
27 (100) 0 (0)
92 (89.3) 11 (10.7)
10 (37.0) 17 (63.0) 2.0 (2.1)
19 (18.4) 83 (80.6) 2.2 (2.0)
15 8 3 1
55 8 3 37
0.12 0.12
(55.6) (29.6) (11.1) (3.7)
0.63 < 0.001
(53.4) (7.8) (2.9) (35.9) 0.26
20 (74.1) 7 (25.9)
87 (84.5) 16 (15.5)
12 5 4 6 0
35 41 21 5 1
0.02 (44.4) (18.5) (14.8) (22.2) (0)
(40.0) (39.8) (20.4) (4.9) (1.0) 0.31
4 (14.8) 23 (85.2) 3.2 (2.4)
26 (25.2) 77 (74.8) 3.4 (5.2)
7 (25.9) 20 (74.1) 0 (0)
41 (39.8) 60 (58.3) 2 (1.9)
0.82 0.29
Wilcoxon rank-sum was used to determine differences among continuous variables, and Fisher’s exact test was used to determine differences among categorical variables. SD, standard deviation; PCP, primary care physician.
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Table 3. Bivariate Analysis of the Effects of Demographic and Experiential Variables on the Possession of a Health Care Proxy
Age Gender Male Female Race White Black Asian Hispanic Religious Yes No Number of comorbidities Presence of cancer Yes No Unknown Last visit to PCP (weeks ago) Insurance Medicaid Medicare Private Uninsured Missing Admitting diagnosis Acute Chronic Elective Experience with death and dying Yes No Experience with end-of-life decision-making Yes No Number of children Who asked about advanced directive Medical staff Legal staff Family/friend Not asked Education High school or less More than high school Marital status Married Single Divorced Widowed Unknown Smoking status Yes No Number of admissions in past year Observed cardiopulmonary arrest Yes No Unknown
Has health care proxy n (%) or mean (SD)
No health care proxy n (%) or mean (SD)
61.7 (13.3)
51.5 (16.8)
16 (35.6) 29 (64.4)
40 (47.1) 45 (52.9)
25 20 0 0
59 25 0 1
p value < 0.001 0.26 0.16
(55.6) (44.4) (0) (0)
(69.4) (29.4) (0) (1.2) 0.04
44 (97.8) 1 (2.2) 4.0 (2.2)
73 (85.9) 12 (14.1) 3.4 (1.8)
11 34 0 9.7
(24.4) (75.6) (0) (13.8)
15 67 3 7.0
(17.6) (78.8) (3.5) (7.6)
8 13 21 1 2
(17.8) (28.9) (46.7) (2.2) (4.4)
17 12 48 6 2
(20.0) (14.1) (56.5) (7.1) (2.4)
0.08 0.49
0.57 0.18
0.35 18 (40.0) 24 (53.3) 3 (6.7)
44 (51.8) 38 (44.7) 3 (3.5)
43 (95.6) 2 (4.4)
76 (89.4) 9 (10.6)
16 (35.6) 29 (64.4) 2.6 (2.1)
13 (15.3) 71 (83.5) 1.9 (1.9)
24 9 5 7
46 7 1 31
0.33 0.01
(53.3) (20.0) (11.1) (15.6)
0.03 0.002
(54.1) (8.2) (1.2) (36.5) 0.15
34 (75.6) 11 (24.4)
73 (85.9) 12 (14.1)
20 6 12 7 0
27 40 13 4 1
< 0.001 (44.4) (13.3) (26.7) (15.6) (0)
(31.8) (47.1) (15.3) (4.7) (1.2) 0.38
8 (17.8) 37 (82.2) 3.4 (2.7)
22 (25.9) 63 (74.1) 3.3 (5.6)
15 (33.3) 30 (66.7) 0 (0)
33 (38.8) 50 (58.8) 2 (2.4)
0.53 0.57
Wilcoxon rank-sum was used to determine differences among continuous variables, and Fisher’s exact test was used to determine differences among categorical variables. SD, standard deviation; PCP, primary care physician.
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0.81–3.47 1.50–12.6 2.03–158.8 1.68 4.34 18.0 0.97 1.12–2.31 1.97–16.50 2.50–22.14
Family structure
10.8 46.5 68.6 0.98
4.59–25.3 15.5–139.4 13.0–361.3
2.31 5.69 22.1 1.00
We found that number of children and marital status impacts possession of advance directives. Specifically, patients with health care proxies had more children than those without. This result was not true of living wills nor did it hold true after adjustment for age, marital status, and gender. A study by Greenberg et al.4 found that having children was a strong predictor of having a living will. That study looked solely at the presence or absence of children, whereas we quantified the number of offspring to see whether that had an impact on advance directive possession. Our findings could suggest that those with multiple children are encouraged to designate a single person as the surrogate decision-maker, which is done when completing a health care proxy but not necessarily a living will. While most of our patients were married, those with living wills or health care proxies were more often widowed than those without them. This furthers our hypothesis that experiences with death and dying, such as one’s spouse, might motivate patients to consider and engage in completing an advance directive. Taken together, our findings suggest that family structure has influence on advance directive completion and warrants further study.
4.30–23.7 12.4–110.8 7.03–194.8
Health care utilization
Adjusted for age, race and marital status. All blank values mean that the 95% CI crossed 1. Elective admission as reference value. d Not asked as reference value. OR, odds ratio; CI, confidence interval. c
b
a
1.01–6.42 1.01–6.49
confirmed that older patients are more likely to complete either a living will or a health care proxy. Although not a predictor for possession of a living will or health care proxy, we found that 97% of the patients with a health care proxy had a religious affiliation, compared to 86% of patients without a health care proxy. This difference was statistically significant. Previous research has suggested relationships between religiousness and end-of-life preferences.12 Further study is needed to delineate the implications of this. We hypothesize that religiously affiliated individuals may have increased exposure to forums that enable end-of-life conversations, such as church or synagogues.
10.1 37.0 37.0 0.98
1.51–8.25 1.29–7.05
0.47 0.69 1.76 1.04 3.53 0.41 0.63 2.55 1.20 3.01 >10 >10 >10 1.25 2.54 >10 >10 >10 1.04 2.57
95% CIb OR 1.09 95% CIb OR 1.18 95% CIb
Each row represents a separate model Number of comorbidities Admitting diagnosisc Acute Chronic Experience with death and dying Number of children Experience with end-of-life decision-making Who askedd Medical staff Legal staff Family/Friend Number of admissions in the past year
OR 1.2
95% CIb
OR 1.15
Adjusteda (living will)
Unadjusted (health care proxy)
Adjusteda (health care proxy)
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Unadjusted (living will)
Table 4. Unadjusted and Adjusted Association of Predictors with Possession of a Living Will and Health Care Proxy
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We hypothesized that a patient’s health care utilization would impact rates of advance directive completion. We generated this hypothesis based on the PSDA mandate requiring hospitals to provide information about advance directives. Using the time since last visiting a PCP and number of hospitalizations as measures of health care utilization, we found that increased interaction with health care did not impact possession of a living will or health care proxy. Simply being asked about presence of advance directives by a medical provider increased the likelihood that of possession by 10.8 times for living wills and 1.68 times for health care proxies. This is an interesting finding considering that the efficacy of the PSDA in increasing utilization of advance directives has been questioned.13 A 2007 study found that 27% of admitted cardiac patients did not recall having a discussion about advance directives as mandated by the PSDA.7 It is possible that patients did not recall being asked the question because they were distracted by the admission process or by their acute illness. In addition, hospitals often have clerks ask about advance directives during the admission process; this practice, although it is in compliance with the PSDA, is unlikely to impact completion of advance directives.
ADVANCE DIRECTIVES IN AN ACUTE HOSPITAL SETTING
Our finding that hospital admissions did not improve advance directive possession offers further evidence of the ineffectiveness of the PSDA, although it is possible that, despite the PSDA, patients were not asked to complete an advance directive while admitted. While we found medical providers asking patients about advance directive increased the likelihood of completion of both living wills and health care proxies, our interviews did not categorize the setting in which this conversation occurred. Overall, our study suggests that our chosen measures of health care utilization are not a good marker of possession of advance directives, but that the simple process of asking a patient about an advance directive has a profound impact on completion rates. These data should reassure clinicians that the topic of advance directives is an important one to bring up during clinical encounters. Larger, more generalizable studies are needed to confirm all of these findings. Disease process
As we expected, our study showed that patients with living wills had more comorbidities than those without them. A study by Thorevska et al.6 showed that patients with higher APACHE (Acute Physiology and Chronic Health Evaluation) scores, a measure of disease severity, were more likely to possess a living will. Our study did not include measures of disease severity. We found that disease chronicity impacts advance directive possession. Patients admitted for reasons related to a chronic disease were more likely to possess a living will than those who were admitted as a result of an acute process. Lamont and Siegler14 found that being admitted emergently to the hospital in itself was not associated with an increased willingness to discuss advance directives, but that 50% of patients with emergency admission specifically due to dyspnea desired to discuss advance directives. In comparison, only 18% of patients with other admitting symptoms wished to discuss them.14 When considered with our findings, this suggests that acute exacerbations of chronic diseases encourage people to consider advance planning and can serve as a trigger for completing an advance directive. It is reasonable to assume that not only disease chronicity but also disease entity would impact the completion of advance directives, and previous studies have supported this notion.3,7,14 Further evidence that advance care planning is disease-specific comes from a study comparing patients with cancer to cardiac patients.7 The study found that patients with advanced cardiac disease were more likely to indicate interest in receiving information about advance directives than those with cancer.7 Others have suggested that goals of treatment may impact likelihood of completing advance directives.2 Although we did not find that the diagnosis of cancer itself impacted advance directive completion, we demonstrated that chronic disease increases the likelihood of having a living will. Thus, disease characteristics and disease entity do seem to influence willingness to discuss and perhaps complete an advance directive.
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gender and marital status. Patients who had made decisions for another were 2.5 times more likely to possess a living will and 3.5 times more likely to possess a health care proxy. Simply having a close friend or relative die, however, did not predict possession of an advance directive in our study. Greenberg et al.4 found that one of the strongest predictors for having an advance directive was having faced a life-threatening experience oneself. Our findings may indicate that the decision-making process, rather than being close to a dying experience or witnessing a cardiopulmonary arrest affects patients in such a way that they go on to complete an advance directive for themselves. However, we did not deeply probe the patients’ end-of-life experiences and cannot be sure whether these experiences had an impact on completion, or if they occurred before the advance directive was completed. We do show that being a decision maker for someone else impacts completion of advance directives and should be the topic of further investigation. Finally, we found that the person asking a patient about advance directives has an impact on completion. When medical staff asked the patient, they were 10.8 times more likely to complete an advance directive; this number rose to 46.5 for legal staff and even higher at 68.6 times more likely for family and friends. Similar trends were seen in regards to health care proxies. Alano et al.9 found that 81% of patients who had an advance directive had been asked about advance directives and received an explanation of why they were important. Similar to our findings, researchers in that study found that the most common person to have asked the patient about advance directives was their child.9 In our population, lawyers were more successful than medical staff in getting patients to complete a living will or health care proxy. The study by Alano et al.9 reported that in an older population, health care providers were the primary influence in completing advance directives only 8% of the time. In that study, lawyers had less influence on completing advance directive (6%) and children had the greatest influence (26%).9 In our population, physicians most commonly asked patients about advance directives but were far less successful than lawyers. Studies investigating these findings are warranted. Living will versus health care proxy
Our findings suggest that while there are important similarities and differences in regards to living wills and health care proxy completion. While both of these documents fall under the umbrella of advance directives, we found in our bivariate analysis that different factors influence whether a person completes a living will or health care proxy. For example, we have shown that living will but not health care proxy completion is increased based on comorbidities and disease entity. Health care proxies, however, were not impacted by these factors. Conversely, religion, and number of children affected health care proxy completion but not living will. This variation has been seen in other studies as well.4,5 For example, racial differences in advance care planning were less pronounced with health care proxies than with living wills.5
End-of-life experiences
We found that patients who had made end-of-life decisions for another were more likely to go through the process of preparing an advance directive, even when adjusted for age,
Limitations
Our results should be interpreted with caution. First, our sample size was small and our population was predominantly
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female and black. Although historically demographics such as age, race, and gender have been shown to have an impact on advance directives and end-of-life preferences, our study did not confirm these findings, which may reflect differences in our patient population. Second, we had a low rate of advance directive completion, although our rates are consistent with those reported in the national literature. Finally, several of our variables were based on patients’ recollections about their experiences and may be inaccurate, allowing for a reporting bias. Conclusion
We conclude that age, religion, family structure, disease entity, and experiences with death and dying play a role in whether patients complete advance directives. We also identified different factors that influence completion of living wills and health care proxies. Our results suggest that health care utilization does not increase advance directive completion, although being asked by a medical professional does. Being asked by a lawyer, family member, or friend predicts a high likelihood of having completed an advance directive. Finally, a patient’s experience with specific diseases and with end-of-life decision-making impacts completion rates of advance directives. Acknowledgment
Portions of this work were presented as an abstract and oral presentation at the 2010 American Thoracic Society International Meeting in New Orleans, Louisiana. Author Disclosure Statement
No competing financial interests exist.
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4. Greenberg MR, Weiner M, Greenberg GB: Risk-reducing legal documents: Controlling personal health and financial resources. Risk Anal 2009;29:1578–1587. 5. Reynolds KS, Hanson LC, Henderson M, Steinhauser KE: End-of-life care in nursing home settings: Do race or age matter? Palliat Support Care 2008;6:21–27. 6. Thorevska N, Tilluckdharry L, Tickoo S, Havasi A, Amoateng-Adjepong Y, Manthous CA: Patients’ understanding of advance directives and cardiopulmonary resuscitation. J Crit Care 2005;20:26–34. 7. Kirkpatrick JN, Guger CJ, Arnsdorf MF, Fedson SE: Advance directives in the cardiac care unit. Am Heart J 2007; 154:477–481. 8. Van Scoy LJ, Sherman M. Factors affecting code status in a university hospital intensive care unit. Death Stud 2013;37: 768–781. 9. Alano GJ, Pekmezaris R, Tai JY, Hussain MJ, Jeune J, Louis B, El-Kass G, Ashraf MS, Reddy R, Lesser M, WolfKlein GP: Factors influencing older adults to complete advance directives. Palliat Support Care 2010;8:267–275. 10. Kwak J, Haley WE: Current research findings on end-oflife decision making among racially or ethnically diverse groups. Gerontologist 2005;45:634–641. 11. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T: Association between advance directives and quality of end-of-life care: A national study. J Am Geriatr Soc 2007;55:189–194. 12. Balboni TA, Vanderwerker LC, Block SD, Paulk ME, Lathan CS, Peteet JR, Prigerson HG: Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007;25:555–560. 13. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T: Association between advance directives and quality of end-of-life care: A national study. J Am Geriatr Soc 2007;55:189–194. 14. Lamont EB: A demographic and prognostic approach to defining the end of life. J Palliat Med 2005;8(Suppl 1):S12–21.
References
1. Hopp FP: Preferences for surrogate decision makers, informal communication, and advance directives among community-dwelling elders: results from a national study. Gerontologist 2000;40:449–457. 2. Lamont EB, Siegler M: Paradoxes in cancer patients’ advance care planning. J Palliat Med 2000;3:27–35. 3. Kierner KA, Hladschik-Kermer B, Gartner V, Watzke HH: Attitudes of patients with malignancies towards completion of advance directives. Support Care Cancer 2010;18: 367–372.
Address correspondence to: Lauren J. Van Scoy, MD Department of Medicine Division of Pulmonary, Allergy, and Critical Care Medicine Penn State Milton S. Hershey Medical Center 500 University Drive, H041 PO Box 850 Hershey, PA 17033-0850 E-mail: [email protected]
Family Structure, Experiences with End-of-Life Decision Making, and Who Asked About Advance Directives Impacts Advance Directive Completion Rates Lauren J. Van Scoy, MD,3 Judie Howrylak, MD, PhD,3 Anhthu Nguyen, MD,1 Melodie Chen, MD,1 and Michael Sherman, MD 1,2
Abstract
Background: Advance directives are an important but underutilized resource. Reasons for this underutilization need to be determined. Objective: We investigated factors associated with completion of advance directives among inpatients. Design: We conducted prospective, structured interviews on family structure, health care, disease, and end-oflife experiences. We compared those with completed advance directives and those without. Setting/Subjects: We interviewed 130 inpatients in an urban university hospital. Measurements: We used bivariate analysis and logistic regression to identify characteristics of patients with living wills and health care proxies versus patients without them. Results: Twenty-one percent of patients had a living will and 35% had a health care proxy. Patients with completed living wills were older ( p £ 0.0046), had more comorbidities ( p = 0.018), were widowed ( p = 0.02), and were more often admitted with chronic disease ( p = 0.009) compared to those without living wills. Patients with health care proxies were older ( p < 0.001), had religious affiliations ( p = 0.04), more children ( p = 0.03), and more often widowed ( p £ 0.001) than those without health care proxies. Patients were 10.8 times (95% confidence interval [CI] 4.59–25.3), 46.5 times (95% CI 15.1–139.4), and 68.6 times (95% CI 13.0–361.3) more likely to complete a living will when asked by medical staff, legal staff, or family and friends, respectively, than those not asked. Patients with health care proxies were 1.68 times (95% CI 0.81–3.47), 4.34 times (95% CI 1.50–12.6), and 18.0 times (95% CI 2.03–158.8) more likely to have been asked by the same groups. Patients with experience in end-of-life decision-making were 2.54 times more likely to possess a living will (95%CI 1.01–6.42) and 3.53 times more likely to possess a health care proxy (95% CI 1.51–8.25) than those without experiences. Conclusions: Having been asked about advance directives by medical staff, legal staff, or family and friends increases the likelihood that patients will possess an advance directive. Those with prior experience with endof-life decision-making are more likely to possess an advance directive. Family structure and health care utilization also impacts possession of advance directives. Introduction
A
dvance directives are well known to be an underutilized medical resource. Despite the implementation of the Patient Self-Determination Act (PSDA) of 1990, which requires hospitals to ask patients whether they have completed advance directives, surprisingly few patients possess these documents. Consistently low rates of advance directive
completion across a variety of settings have been reported, ranging from 5% to 39%.1–8 For example, researchers found that among hospitalized patients with cancer, only 33% possessed a formal advance directive.2 In a study of more than 1100 nursing home residents, only 30% of patients possessed a living will or health care proxy.5 We recently found that only 17% of patients in our intensive care unit (ICU) possessed advance directives.8
1
Department of General Internal Medicine, 2Division of Pulmonary, Critical Care and Sleep Medicine, Drexel University College of Medicine, Philadelphia, Pennsylvania. 3 Department of Medicine, Division of Pulmonary, Allergy, and Critical Care, Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania. Accepted May 29, 2014.
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These consistently low rates of advance directive completion have generated tremendous interest in identifying factors that might account for these findings. Factors previously reported to impact completion of advance directives include demographics such as age,4–7,9 race,2,5,6,9,10 and gender.9,10 Religion and educational status may also play a role.9 Few studies have investigated the impact a patient’s disease type and experience in the health care system might have upon whether they choose to complete advance directives. We hypothesized that frequent interactions with the health care system, chronic and comorbid diseases, and experiences with end-of-life issues would increase advance directive completion. For the purposes of this article, we define a living will as a written instruction that limits care at the end-of-life. We use the term health care proxy to represent a formally documented health care proxy or agent or durable power of attorney for health care. The term advance directive is used in this article to describe either a living will or health care proxy. Methods Patients and setting
We interviewed 130 inpatients in an urban university hospital. The hospital is set in a northeast environment and serves an urban and nearby suburban population with diverse racial, socioeconomic, and cultural backgrounds. Thirty-six percent of the patients admitted to this hospital are white, 59% black, and 5% of other backgrounds. Approximately 47% of the patients are male and 53% are female. The hospital is nonspecialized, covering a wide variety of medical and surgical subspecialties. Based on a 6month analysis of over 9800 billing codes for the hospital, approximately 65% of patients are admitted to a medical service, 16% to an obstetrics/gynecology service, 9% to a surgical service, 7% to the neurology service, and 3% to an oncology service. Data collection
We collected several broad categories of data: patient demographics, health care utilization, disease entity, and experiences with death, dying, or end-of-life decision-making. Data were collected during one-on-one interviews and verified by chart review. Patients were chosen for interviews based on floor and bed number. The interviewers, who were internal medicine resident physicians, entered rooms at random on each hospital floor during interview days chosen based on the interviewers’ individual schedules. Each interviewer entered approximately five rooms per floor per day. Interviewers did not have clinical relationships with the patients. Patients were excluded from the study if the bed was vacant at the time the interviewer entered the room, they were less than 18 years of age, required an intensive level of care, or were unable to speak English, communicate with the interviewer, or provide informed consent for any reason. Once informed consent was obtained, interviewers used a scripted survey to collect data regarding the presence of living wills or health care proxies, patient demographics, health care utilization, and experiences with death and dying. Health care utilization and disease characteristics included information about comorbidities, diagnoses, insurance status, chronicity
VAN SCOY ET AL.
of disease, presence of cancer, smoking history, visits to the primary care physician, and hospitalizations. A disease was categorized as acute versus chronic based on chart review by the physician interviewer. Acute disease was defined as a newly diagnosed illness and chronic disease as a progression or exacerbation of an ongoing underlying illness. Patients were asked if they had ever had previous discussions about advance directives and if so, who had initiated the conversation (e.g., physician, attorney, family, etc.). We gathered information about experiences with death and dying including having witnessed a cardiopulmonary arrest and having made end-of-life decisions for oneself or others. After the interview, medical charts were reviewed by the interviewer to confirm the information gathered and collect any additional data not provided by the patient. Statistical analysis
We performed a bivariate analysis using Wilcoxon ranksum and Fisher’s exact tests to make comparisons between demographic and clinical characteristics of study subjects with and without living wills and health care proxies. We calculated counts and percentages or arithmetic means and standard deviations for all variables measured. We conducted unadjusted logistic regression analysis to evaluate the association of potential covariates with possession of advance directives. We next conducted a multivariable analysis considering potential covariates. In the initial multivariable model, we included covariates that had a p value < 0.10 in the univariate analysis. We used backward elimination techniques for variable reduction, and retained covariates when they were significant or when removal caused a greater than 10% change in the estimate for possession of a living will or health care proxy. A biostatistician performed the statistical analysis. We obtained approval from the Institutional Review Board prior to subject recruitment. Results Demographics and advance directives
We interviewed a total of 130 inpatients. Patient demographics, disease characteristics, and prevalence of living wills and health care proxies are shown in Table 1. Survey participants were mostly female (57%) and black (65%). Sixty-four percent of patients were admitted for nononcologic, medical diagnoses (Table 1). Our study had an equal mix of acute and chronic disease processes as the reason patients’ admission to the hospital. Eighty-two percent of our population had attained educational status of high school or less and 95% percent had health insurance. Ninety percent of patients reported a religious affiliation. Bivariate analysis
Table 2 shows the results of the bivariate analysis comparing those with and without a living will. There was no difference in race or gender in patients who possessed a living will. Older patients were more likely to possess a living will ( p = 0.0046). Patients with living wills had more comorbidities than those without living wills ( p = 0.018). Measures of health care utilization such as weeks since last primary care physician (PCP) visit and number of admissions in the last year did not impact possession of living wills. Of our
ADVANCE DIRECTIVES IN AN ACUTE HOSPITAL SETTING
Table 1. Patient Demographics and Characteristics Age Mean years (SD) Race n, (%) African American n, (%) Caucasian Presence of advance directive n, (%) With living will n, (%) Without living will n, (%) With proxy n, (%) Without proxy n, (%) With both Educational status n, (%) High school or Less n, (%) College or higher Currently married n, (%) Yes n, (%) No Insurance n, (%) Yes n, (%) No Current smoker n, (%) Yes n, (%) No Seen a cardiopulmonary arrest n, (%) Yes n, (%) No Gender n, (%) Male n, (%) Female Disease entity n, (%) Surgical n, (%) Medical (nononcologic) n, (%) Oncologic n, (%) OB/Gyn n, (%) Neurologic Religious affiliation n, (%) Yes n, (%) No Currently employed n, (%) Yes n, (%) No Diagnosed with cancer n, (%) Yes n, (%) No Disease process n, (%) Acute n, (%) Chronic n, (%) Elective Hospitalization
55 (16) 84 (65) 46 (35) 27 103 45 85 23
(21) (79) (35) (65) (18)
107 (82) 23 (18) 47 (36) 83 (64) 124 (95) 6 (5) 30 (23) 100 (77) 48 (37) 82 (63) 56 (43) 74 (57) 25 83 9 5 8
(19) (64) (7) (4) (6)
117 (90) 13 (10) 59 (45) 71 (55) 26 (20) 104 (80) 62 (48) 62 (48) 6 (4)
SD, standard deviation.
hospitalized patients with a living will, 74% were admitted for a chronic condition, whereas those without living wills were equally likely to have an acute or chronic condition as the reason for their admission ( p = 0.009). Admission with an acute disease process did not show similar proportions. Most patients in our study were married, however, the proportion of those with a living will who were widowed was significantly higher than those who did not have a living will ( p = 0.02). Experience with death and dying of a loved one or
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witnessing a cardiopulmonary arrest did not affect possession a living will. The results of the bivariate analysis for patients with and without a health care proxy are displayed in Table 3. Older patients were more likely to possess a health care proxy ( p £ 0.001) and there was no difference in race or gender. Those with a health care proxy were more likely to report a religious affiliation than those without a health care proxy ( p = 0.04). Measures of health care utilization such as weeks since last PCP visit and number of admissions in the last year did not impact health care proxy possession. Patients with a health care proxy had more children than those without one ( p = 0.03). Those with health care proxies were four times more likely to be widowed than those without a health care proxy. The majority of patients without health care proxies were single ( p < 0.001). Among those who had a health care proxy, 35.6% had made end-of-life decisions for another while only 15.3% had done so in the group without a health care proxy ( p = 0.01). Experience with death and dying of a loved one or witnessing a cardiopulmonary arrest did not affect possession a health care proxy. Logistic regression analysis
The results of the logistic regression analysis adjusting for age, race, and marital status are displayed in Table 4. Patients who were asked about advance directives by medical staff were 10.8 times more likely to complete a living will (95% confidence interval [CI] 4.59–25.3) and 1.68 times more likely to complete a health care proxy (95% CI 0.81–3.47) than those who were not asked. Those asked by legal staff were 46.5 times more likely to have a living will (95% CI 15.5–139.4) and 4.34 times more likely to have a health care proxy (95% CI 1.5– 12.6). Those asked by family or friends were 68.6 times more likely to have a living will (95% CI 13.0–361.3) and 18 times more likely to have a health care proxy (95% CI 2.03–158.8). Patients who had experience with end-of-life decisionmaking were 2.54 times more likely to possess a living will than those who had not made end-of-life decisions (Table 4, 95% CI 1.01–6.42). Similarly, patients with decision-making experiences were 3.53 times more likely to possess a health care proxy (95% CI 1.51–8.25). Discussion
In this prospective study of non-ICU inpatients in an urban university teaching hospital, the presence of advance directives was affected by elements of a patients’ demographics, family structure, disease process and experiences with endof-life decision-making. In our population, eight factors impacted possession of advance directives: age; religious affiliation; number of children marital status; number of comorbidities; admission with a chronic disease; having made end-of-life decisions for someone else; and who asked the patient about advance directives. We found differences in factors that are associated with completion of a living will as opposed to a health care proxy in our study. Patient demographics
It is well established that patient age is associated with higher rates of advance directive completion.5,9,11 Our study
Table 2. Bivariate Analysis of the Effects of Demographic and Experiential Variables on the Possession of a Living Will
Age Gender Male Female Race White Black Asian Hispanic Religious Yes No Number of comorbidities Presence of cancer Yes No Unknown Last visit to PCP (weeks ago) Insurance Medicaid Medicare Private Uninsured Missing Admitting diagnosis Acute Chronic Elective Experience with death and dying Yes No Experience with end-of-life decision-making Yes No Number of children Who asked about advanced directive Medical staff Legal staff Family/friend Not asked Education High school or less More than high school Marital status Married Single Divorced Widowed Unknown Smoking status Yes No Number of admission in past year Observed cardiopulmonary arrest Yes No Unknown
Living will n (%) or mean (SD)
No living will n (%) or mean (SD)
63.3 (14.8)
52.9 (16.1)
10 (37.0) 17 (63.0)
46 (44.7) 57 (55.3)
13 14 0 0
32 70 0 1
p value 0.0046 0.52 0.29
(48.1) (51.9) (0) (0)
(31.1) (68.0) (0) (1.0) 1.0
25 (92.6) 2 (7.4) 4.2 (1.6)
92 (89.3) 11 (10.7) 3.5 (2.0)
7 20 0 7.0
(25.9) (74.1) (0) (12.0)
19 81 3 8.3
(18.4) (78.6) (2.9) (9.9)
5 8 11 1 2
(18.5) (29.6) (40.7) (3.7) (7.4)
20 17 58 6 2
(19.4) (16.5) (56.3) (5.8) (1.9)
0.018 0.43
0.13 0.40
0.0090 7 (25.9) 20 (74.1) 0 (0)
55 (53.3) 42 (40.8) 6 (5.8)
27 (100) 0 (0)
92 (89.3) 11 (10.7)
10 (37.0) 17 (63.0) 2.0 (2.1)
19 (18.4) 83 (80.6) 2.2 (2.0)
15 8 3 1
55 8 3 37
0.12 0.12
(55.6) (29.6) (11.1) (3.7)
0.63 < 0.001
(53.4) (7.8) (2.9) (35.9) 0.26
20 (74.1) 7 (25.9)
87 (84.5) 16 (15.5)
12 5 4 6 0
35 41 21 5 1
0.02 (44.4) (18.5) (14.8) (22.2) (0)
(40.0) (39.8) (20.4) (4.9) (1.0) 0.31
4 (14.8) 23 (85.2) 3.2 (2.4)
26 (25.2) 77 (74.8) 3.4 (5.2)
7 (25.9) 20 (74.1) 0 (0)
41 (39.8) 60 (58.3) 2 (1.9)
0.82 0.29
Wilcoxon rank-sum was used to determine differences among continuous variables, and Fisher’s exact test was used to determine differences among categorical variables. SD, standard deviation; PCP, primary care physician.
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Table 3. Bivariate Analysis of the Effects of Demographic and Experiential Variables on the Possession of a Health Care Proxy
Age Gender Male Female Race White Black Asian Hispanic Religious Yes No Number of comorbidities Presence of cancer Yes No Unknown Last visit to PCP (weeks ago) Insurance Medicaid Medicare Private Uninsured Missing Admitting diagnosis Acute Chronic Elective Experience with death and dying Yes No Experience with end-of-life decision-making Yes No Number of children Who asked about advanced directive Medical staff Legal staff Family/friend Not asked Education High school or less More than high school Marital status Married Single Divorced Widowed Unknown Smoking status Yes No Number of admissions in past year Observed cardiopulmonary arrest Yes No Unknown
Has health care proxy n (%) or mean (SD)
No health care proxy n (%) or mean (SD)
61.7 (13.3)
51.5 (16.8)
16 (35.6) 29 (64.4)
40 (47.1) 45 (52.9)
25 20 0 0
59 25 0 1
p value < 0.001 0.26 0.16
(55.6) (44.4) (0) (0)
(69.4) (29.4) (0) (1.2) 0.04
44 (97.8) 1 (2.2) 4.0 (2.2)
73 (85.9) 12 (14.1) 3.4 (1.8)
11 34 0 9.7
(24.4) (75.6) (0) (13.8)
15 67 3 7.0
(17.6) (78.8) (3.5) (7.6)
8 13 21 1 2
(17.8) (28.9) (46.7) (2.2) (4.4)
17 12 48 6 2
(20.0) (14.1) (56.5) (7.1) (2.4)
0.08 0.49
0.57 0.18
0.35 18 (40.0) 24 (53.3) 3 (6.7)
44 (51.8) 38 (44.7) 3 (3.5)
43 (95.6) 2 (4.4)
76 (89.4) 9 (10.6)
16 (35.6) 29 (64.4) 2.6 (2.1)
13 (15.3) 71 (83.5) 1.9 (1.9)
24 9 5 7
46 7 1 31
0.33 0.01
(53.3) (20.0) (11.1) (15.6)
0.03 0.002
(54.1) (8.2) (1.2) (36.5) 0.15
34 (75.6) 11 (24.4)
73 (85.9) 12 (14.1)
20 6 12 7 0
27 40 13 4 1
< 0.001 (44.4) (13.3) (26.7) (15.6) (0)
(31.8) (47.1) (15.3) (4.7) (1.2) 0.38
8 (17.8) 37 (82.2) 3.4 (2.7)
22 (25.9) 63 (74.1) 3.3 (5.6)
15 (33.3) 30 (66.7) 0 (0)
33 (38.8) 50 (58.8) 2 (2.4)
0.53 0.57
Wilcoxon rank-sum was used to determine differences among continuous variables, and Fisher’s exact test was used to determine differences among categorical variables. SD, standard deviation; PCP, primary care physician.
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0.81–3.47 1.50–12.6 2.03–158.8 1.68 4.34 18.0 0.97 1.12–2.31 1.97–16.50 2.50–22.14
Family structure
10.8 46.5 68.6 0.98
4.59–25.3 15.5–139.4 13.0–361.3
2.31 5.69 22.1 1.00
We found that number of children and marital status impacts possession of advance directives. Specifically, patients with health care proxies had more children than those without. This result was not true of living wills nor did it hold true after adjustment for age, marital status, and gender. A study by Greenberg et al.4 found that having children was a strong predictor of having a living will. That study looked solely at the presence or absence of children, whereas we quantified the number of offspring to see whether that had an impact on advance directive possession. Our findings could suggest that those with multiple children are encouraged to designate a single person as the surrogate decision-maker, which is done when completing a health care proxy but not necessarily a living will. While most of our patients were married, those with living wills or health care proxies were more often widowed than those without them. This furthers our hypothesis that experiences with death and dying, such as one’s spouse, might motivate patients to consider and engage in completing an advance directive. Taken together, our findings suggest that family structure has influence on advance directive completion and warrants further study.
4.30–23.7 12.4–110.8 7.03–194.8
Health care utilization
Adjusted for age, race and marital status. All blank values mean that the 95% CI crossed 1. Elective admission as reference value. d Not asked as reference value. OR, odds ratio; CI, confidence interval. c
b
a
1.01–6.42 1.01–6.49
confirmed that older patients are more likely to complete either a living will or a health care proxy. Although not a predictor for possession of a living will or health care proxy, we found that 97% of the patients with a health care proxy had a religious affiliation, compared to 86% of patients without a health care proxy. This difference was statistically significant. Previous research has suggested relationships between religiousness and end-of-life preferences.12 Further study is needed to delineate the implications of this. We hypothesize that religiously affiliated individuals may have increased exposure to forums that enable end-of-life conversations, such as church or synagogues.
10.1 37.0 37.0 0.98
1.51–8.25 1.29–7.05
0.47 0.69 1.76 1.04 3.53 0.41 0.63 2.55 1.20 3.01 >10 >10 >10 1.25 2.54 >10 >10 >10 1.04 2.57
95% CIb OR 1.09 95% CIb OR 1.18 95% CIb
Each row represents a separate model Number of comorbidities Admitting diagnosisc Acute Chronic Experience with death and dying Number of children Experience with end-of-life decision-making Who askedd Medical staff Legal staff Family/Friend Number of admissions in the past year
OR 1.2
95% CIb
OR 1.15
Adjusteda (living will)
Unadjusted (health care proxy)
Adjusteda (health care proxy)
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Unadjusted (living will)
Table 4. Unadjusted and Adjusted Association of Predictors with Possession of a Living Will and Health Care Proxy
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We hypothesized that a patient’s health care utilization would impact rates of advance directive completion. We generated this hypothesis based on the PSDA mandate requiring hospitals to provide information about advance directives. Using the time since last visiting a PCP and number of hospitalizations as measures of health care utilization, we found that increased interaction with health care did not impact possession of a living will or health care proxy. Simply being asked about presence of advance directives by a medical provider increased the likelihood that of possession by 10.8 times for living wills and 1.68 times for health care proxies. This is an interesting finding considering that the efficacy of the PSDA in increasing utilization of advance directives has been questioned.13 A 2007 study found that 27% of admitted cardiac patients did not recall having a discussion about advance directives as mandated by the PSDA.7 It is possible that patients did not recall being asked the question because they were distracted by the admission process or by their acute illness. In addition, hospitals often have clerks ask about advance directives during the admission process; this practice, although it is in compliance with the PSDA, is unlikely to impact completion of advance directives.
ADVANCE DIRECTIVES IN AN ACUTE HOSPITAL SETTING
Our finding that hospital admissions did not improve advance directive possession offers further evidence of the ineffectiveness of the PSDA, although it is possible that, despite the PSDA, patients were not asked to complete an advance directive while admitted. While we found medical providers asking patients about advance directive increased the likelihood of completion of both living wills and health care proxies, our interviews did not categorize the setting in which this conversation occurred. Overall, our study suggests that our chosen measures of health care utilization are not a good marker of possession of advance directives, but that the simple process of asking a patient about an advance directive has a profound impact on completion rates. These data should reassure clinicians that the topic of advance directives is an important one to bring up during clinical encounters. Larger, more generalizable studies are needed to confirm all of these findings. Disease process
As we expected, our study showed that patients with living wills had more comorbidities than those without them. A study by Thorevska et al.6 showed that patients with higher APACHE (Acute Physiology and Chronic Health Evaluation) scores, a measure of disease severity, were more likely to possess a living will. Our study did not include measures of disease severity. We found that disease chronicity impacts advance directive possession. Patients admitted for reasons related to a chronic disease were more likely to possess a living will than those who were admitted as a result of an acute process. Lamont and Siegler14 found that being admitted emergently to the hospital in itself was not associated with an increased willingness to discuss advance directives, but that 50% of patients with emergency admission specifically due to dyspnea desired to discuss advance directives. In comparison, only 18% of patients with other admitting symptoms wished to discuss them.14 When considered with our findings, this suggests that acute exacerbations of chronic diseases encourage people to consider advance planning and can serve as a trigger for completing an advance directive. It is reasonable to assume that not only disease chronicity but also disease entity would impact the completion of advance directives, and previous studies have supported this notion.3,7,14 Further evidence that advance care planning is disease-specific comes from a study comparing patients with cancer to cardiac patients.7 The study found that patients with advanced cardiac disease were more likely to indicate interest in receiving information about advance directives than those with cancer.7 Others have suggested that goals of treatment may impact likelihood of completing advance directives.2 Although we did not find that the diagnosis of cancer itself impacted advance directive completion, we demonstrated that chronic disease increases the likelihood of having a living will. Thus, disease characteristics and disease entity do seem to influence willingness to discuss and perhaps complete an advance directive.
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gender and marital status. Patients who had made decisions for another were 2.5 times more likely to possess a living will and 3.5 times more likely to possess a health care proxy. Simply having a close friend or relative die, however, did not predict possession of an advance directive in our study. Greenberg et al.4 found that one of the strongest predictors for having an advance directive was having faced a life-threatening experience oneself. Our findings may indicate that the decision-making process, rather than being close to a dying experience or witnessing a cardiopulmonary arrest affects patients in such a way that they go on to complete an advance directive for themselves. However, we did not deeply probe the patients’ end-of-life experiences and cannot be sure whether these experiences had an impact on completion, or if they occurred before the advance directive was completed. We do show that being a decision maker for someone else impacts completion of advance directives and should be the topic of further investigation. Finally, we found that the person asking a patient about advance directives has an impact on completion. When medical staff asked the patient, they were 10.8 times more likely to complete an advance directive; this number rose to 46.5 for legal staff and even higher at 68.6 times more likely for family and friends. Similar trends were seen in regards to health care proxies. Alano et al.9 found that 81% of patients who had an advance directive had been asked about advance directives and received an explanation of why they were important. Similar to our findings, researchers in that study found that the most common person to have asked the patient about advance directives was their child.9 In our population, lawyers were more successful than medical staff in getting patients to complete a living will or health care proxy. The study by Alano et al.9 reported that in an older population, health care providers were the primary influence in completing advance directives only 8% of the time. In that study, lawyers had less influence on completing advance directive (6%) and children had the greatest influence (26%).9 In our population, physicians most commonly asked patients about advance directives but were far less successful than lawyers. Studies investigating these findings are warranted. Living will versus health care proxy
Our findings suggest that while there are important similarities and differences in regards to living wills and health care proxy completion. While both of these documents fall under the umbrella of advance directives, we found in our bivariate analysis that different factors influence whether a person completes a living will or health care proxy. For example, we have shown that living will but not health care proxy completion is increased based on comorbidities and disease entity. Health care proxies, however, were not impacted by these factors. Conversely, religion, and number of children affected health care proxy completion but not living will. This variation has been seen in other studies as well.4,5 For example, racial differences in advance care planning were less pronounced with health care proxies than with living wills.5
End-of-life experiences
We found that patients who had made end-of-life decisions for another were more likely to go through the process of preparing an advance directive, even when adjusted for age,
Limitations
Our results should be interpreted with caution. First, our sample size was small and our population was predominantly
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female and black. Although historically demographics such as age, race, and gender have been shown to have an impact on advance directives and end-of-life preferences, our study did not confirm these findings, which may reflect differences in our patient population. Second, we had a low rate of advance directive completion, although our rates are consistent with those reported in the national literature. Finally, several of our variables were based on patients’ recollections about their experiences and may be inaccurate, allowing for a reporting bias. Conclusion
We conclude that age, religion, family structure, disease entity, and experiences with death and dying play a role in whether patients complete advance directives. We also identified different factors that influence completion of living wills and health care proxies. Our results suggest that health care utilization does not increase advance directive completion, although being asked by a medical professional does. Being asked by a lawyer, family member, or friend predicts a high likelihood of having completed an advance directive. Finally, a patient’s experience with specific diseases and with end-of-life decision-making impacts completion rates of advance directives. Acknowledgment
Portions of this work were presented as an abstract and oral presentation at the 2010 American Thoracic Society International Meeting in New Orleans, Louisiana. Author Disclosure Statement
No competing financial interests exist.
VAN SCOY ET AL.
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Address correspondence to: Lauren J. Van Scoy, MD Department of Medicine Division of Pulmonary, Allergy, and Critical Care Medicine Penn State Milton S. Hershey Medical Center 500 University Drive, H041 PO Box 850 Hershey, PA 17033-0850 E-mail: [email protected]
