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Advance Directives as Acts of Communication
A Randomized Controlled Trial
Peter H. Ditto, PhD;
Joseph H. Danks, PhD;
William D. Smucker, MD;
Jamila Bookwala, PhD;
Kristen M. Coppola, PhD;
Rebecca Dresser, JD;
Angela Fagerlin, PhD;
R. Mitchell Gready, PhD;
Renate M. Houts, PhD;
Lisa K. Lockhart, PhD;
Stephen Zyzanski, PhD
Arch Intern Med. 2001;161:421-430.
ABSTRACT
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Background Instructional advance directives are widely advocated as a means of
preserving patient self-determination at the end of life based on the assumption
that they improve surrogates' understanding of patients' life-sustaining treatment
wishes. However, no research has examined whether instructional directives
are effective in improving the accuracy of surrogate decisions.
Participants and Methods A total of 401 outpatients aged 65 years or older and their self-designated
surrogate decision makers (62% spouses, 29% children) were randomized to 1
of 5 experimental conditions. In the control condition, surrogates predicted
patients' preferences for 4 life-sustaining medical treatments in 9 illness
scenarios without the benefit of a patient-completed advance directive. Accuracy
in this condition was compared with that in 4 intervention conditions in which
surrogates made predictions after reviewing either a scenario-based or a value-based
directive completed by the patient and either discussing or not discussing
the contents of the directive with the patient. Perceived benefits of advance
directive completion were also measured.
Results None of the interventions produced significant improvements in the accuracy
of surrogate substituted judgment in any illness scenario or for any medical
treatment. Discussion interventions improved perceived surrogate understanding
and comfort for patient-surrogate pairs in which the patient had not completed
an advance directive prior to study participation.
Conclusions Our results challenge current policy and law advocating instructional
advance directives as a means of honoring specific patient wishes at the end
of life. Future research should explore other methods of improving surrogate
decision making and consider the value of other outcomes in evaluating the
effectiveness of advance care planning.
INTRODUCTION
EVERY YEAR, many people in the United States complete advance directives
(ADs) in the hope of ensuring that their wishes about medical treatment near
the end of life will be honored. All 50 states and the District of Columbia
have legislation that authorizes the use of instructional ADs (eg, living
wills), the appointment of a health care agent, or both. These state laws
are reinforced at the federal level by the Patient Self-determination Act.1 The American Medical Association,2
the American Geriatrics Society,3 the American
Association of Retired Persons,4 and the Hastings
Center5 all advocate the use of ADs as a crucial
means of improving medical care at the end of life.
Policy- and law-advocating ADs flow directly from a belief in the ethical
priority of self-determination in medical decision making.1, 6, 7
When illness or injury deprives individuals of decisional capacity, ADs are
intended to preserve patients' ability to influence decisions about the medical
care they receive.8, 9 This is
particularly true of instructional ADs, which are designed to communicate
information about a patient's values, goals, and preferences to loved ones
who are faced with the challenge of making decisions on the patient's behalf.
Theoretically, instructional ADs maintain the patient's voice in treatment
decisions by enhancing the ability of surrogate decision makers to make the
treatment choices that patients would make for themselves if competent (ie,
improve the accuracy of surrogate substituted judgment).
Studies have repeatedly found that without the benefit of an AD, both
family members and physicians show substantial inaccuracy when attempting
to predict patients' life-sustaining treatment preferences.10, 11, 12, 13, 14, 15, 16, 17
No research, however, has tested the assumption that allowing surrogates to
review or discuss a patient-completed instructional directive improves the
accuracy of substituted judgment.18 If instructional
directives fail to communicate information in a way that improves the ability
of surrogate decision makers to understand and predict patient preferences,
then the wisdom of advocating ADs as a means of preserving patients' ability
to control specific treatment decisions near the end of life is suspect. Surrogates
cannot honor a patient's wishes if they do not understand those wishes.
A test of the assumption that instructional ADs improve the accuracy
of substituted judgment requires a direct comparison of the accuracy of surrogate
decision makers randomized to make treatment predictions with and without
the benefit of reviewing a patient's completed AD. A thorough test of this
assumption must also consider the possibility that different methods of documenting
AD information may be differentially effective in improving the quality of
surrogate decisions. The most straightforward approach to AD documentation
is to record patients' preferences for specific medical treatments in specific
medical scenarios.19, 20 Some have
argued that this approach supplies inadequate guidance to surrogates facing
treatment choices that differ from those in the scenario-based directive,21, 22 and advocate instead the use of ADs
that focus on the general values underlying specific choices about end-of-life
care.23, 24 More recent proposals
have moved away from reliance on documents altogether to advocate a broader
process of advance care planning.25, 26
This approach is based on the belief that discussions with loved ones that
accompany the process of AD completion are at least as valuable as the resulting
document itself in promoting understanding of a patient's wishes. At present,
no empirical evidence exists to support the effectiveness of any of these
approaches in improving the accuracy of surrogate decisions, and thus arguments
about the superiority of one approach over another are premature.
The Advance Directives, Values Assessment, and Communication Enhancement
(ADVANCE) project was a 3-phase, longitudinal study designed to test key assumptions
underlying the use of instructional ADs. This article describes the results
of phase 1 of the ADVANCE project: a randomized controlled trial designed
to evaluate the effectiveness of 2 instructional directives, completed with
and without patient-surrogate discussion, to improve the accuracy of surrogate
substituted judgment.
METHODS
PARTICIPANTS
ADVANCE participants were recruited from 6 primary care practices affiliated
with Summa Health System in Akron, Ohio. Randomly selected patients aged 65
years and older (N = 2544) received a letter from their physician inviting
them to participate in the study. Individuals aged 75 years and older were
oversampled. Potential participants were given 1 week after receipt of the
letter to call the project office if they were unable or unwilling to participate
(189 did so). Professional interviewers attempted to contact each remaining
patient by telephone (612 potential participants could not be reached because
of death, disconnected telephones, etc). The patients contacted (n = 1704)
were informed that the study involved three 1- to 2-hour in-home interviews
over 2 years, additional interviews if hospitalized, and the coparticipation
of a surrogate decision maker (defined as the individual
they would want to make medical decisions for them if they were no longer
able). Prior research27 led us to anticipate
that these study requirements would result in a participation rate of approximately
30%. Accordingly, age and sex information was obtained from all individuals
contacted and an attempt was made to collect additional information about
patients' plans for future medical care. A total of 447 potential participants
were excluded for 1 or more of the following reasons: no available surrogate
decision maker, spouse already participating, or patient judged unable to
give informed consent. Of 849 refusing to participate, 510 agreed to answer
questions about planning for future medical care. We randomized the remaining
408 patient-surrogate pairs to 1 of 5 experimental conditions using randomization
without replacement within blocks of 5 pairs to ensure approximately equal
sample sizes across conditions. Seven patient-surrogate pairs were dropped
from the study after randomization (Figure
1).
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Figure 1. Randomization of participants
in the ADVANCE (Advance Directives, Values Assessment, and Communication Enhancement)
project.
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OUTCOME MEASURES
The primary outcome (accuracy of substituted judgment) was measured
with the Life-Support Preferences/Predictions Questionnaire (LSPQ).28, 29, 30 The LSPQ (written
at the eighth-grade reading level)31 describes
9 different illness scenarios chosen to capture a wide range of conditions
varying in their severity, nature of impairment, prognosis, and level of pain:
(1) the patient's current health; (2) Alzheimer disease with moderately severe
cognitive impairment; (3) emphysema with severe physical limitations; (4)
coma persisting 6 weeks after a stroke with no obvious cognitive abilities
and physician opinion of no chance of recovery; (5) the same coma scenario
as item 4 with a physician opinion of a very slight chance of recovery; (6)
stroke resulting in partial paralysis, language deficits, total dependence
in activities of daily living, and physician opinion of no chance of improvement;
(7) the same stroke scenario as item 6 with a physician opinion of a very
slight chance of improvement; (8) colon cancer with fatigue, no pain, and
a life expectancy of 6 months; and (9) the same cancer scenario as item 8
with pain that requires the constant use of medication. Patients were asked
to imagine themselves in each scenario and indicate their preference for receiving
each of 4 life-sustaining medical treatments chosen to vary in invasiveness:
(1) antibiotics for life-threatening pneumonia, (2) cardiopulmonary resuscitation
(CPR) for cardiac arrest, (3) emergency gallbladder surgery for life-threatening
gallbladder infection , and (4) artificial nutrition and hydration (ANH) for
inability to take food or water. Preferences for ANH were not solicited in
the current health scenario because patients were unlikely to require ANH
in that situation. Patients indicated their treatment preferences using a
5-point Likert scale ranging from "definitely don't want" to "definitely want"
treatment.10, 11, 13
Surrogates were asked to imagine the patient in each illness scenario and
predict the patient's treatment preferences using the same scale.
The secondary outcomes (perceived benefits of AD completion) were measured
with 5 questions using 5-point Likert scales. The questions measured patients'
and surrogates' beliefs regarding (1) surrogates' general understanding of
patients' life-sustaining treatment preferences, (2) confidence in surrogates'
ability to predict accurately patients' treatment decisions, (3) surrogates'
likelihood of honoring patients' treatment wishes, (4) surrogates' comfort
in making medical decisions on behalf of the patient, and (5) the importance
of having an AD.
PROTOCOL
Patients and surrogates were interviewed in a single session and institutionally
approved informed consent was obtained from both participants.
In the no-AD (control) condition, patients and surrogates were separated
after informed consent. Patients were administered the LSPQ and perceived
benefit measures while surrogates completed a self-administered questionnaire
containing measures not described in this article. Patients then completed
the questionnaire while surrogates were administered the LSPQ and perceived
benefit measures.
In the 2 no-discussion intervention conditions, patients and surrogates
separated, and the patient completed 1 of 2 AD documents. The health care
directive (HCD)20 is a scenario-based AD in
which respondents indicate their desire for 6 life-sustaining treatments in
each of 6 medical scenarios and describe overall goals for future medical
care. (The HCD used in the ADVANCE project was slightly modified from the
standard version. Scenarios and treatments were identical. The primary difference
was that we asked about the goal of medical care once after all scenarios
had been completed rather than after each scenario.) The valued life activities
directive (VLA) is a value-based AD developed by our group.24
Respondents are asked to think about the activities "that make your life worth
living" and generate a list of activities they believe are so important to
their well-being that they would not want to live if they were no longer able
to engage in those activities. Both ADs were read aloud by the interviewer
and patients' responses were recorded on a paper copy. After completing the
AD, patients were administered the LSPQ and perceived benefit measures. The
surrogate interview began by allowing the surrogate to review the patient's
AD. The format of each directive was explained and surrogates were given as
much time as desired to review the document before and during completion of
the LSPQ.
In the 2 discussion intervention conditions, patients completed the
AD in the presence of the surrogate. Pairs were encouraged to discuss the
patient's responses to the directive through a series of structured prompts
delivered by the interviewer. These prompts asked patients to explain the
reasons underlying their choices and encouraged surrogates to ask patients
to clarify the reasons for their choices. (Copies of both ADs with the content
and schedule of discussion prompts can be obtained from the first author [P.H.D.]
on request.) After completing the AD, patients and surrogates separated and
the interviews proceeded as in the other conditions.
Patients and surrogates provided standard demographic information. Patients
also completed the Medical Outcomes Study 36-Item Short-Form Health Survey32 and the Center for Epidemiological Studies Depression
Scale 10.33
STATISTICAL ANALYSIS
Characteristics of patients agreeing and refusing to participate were
compared with t tests for continuous variables and  2 tests for categorical variables. Similar analyses compared characteristics
of patients and surrogates randomized to the 5 experimental conditions.
Responses on the LSPQ were dichotomized into "want treatment" ("definitely
want," "probably want," or "unsure") and "don't want treatment" ("probably
do not want" and "definitely do not want") responses for each of the 35 treatment
decisions. (Following past research,10, 11, 13
"unsure" responses were categorized with "want treatment" responses because
in most instances the clinical default is to provide treatment unless specifically
refused.10, 11, 16
Analyzing data excluding "unsure" responses or treating them as a third response
category produced no significant differences in the study results.) Proportion
indexes were generated for preferences and predictions in each scenario by
summing the number of "want treatment" responses within each scenario and
dividing by the number of decisions in that scenario. Repeated-measures analyses
of variance compared preference-prediction indexes across illness scenarios
and the overall proportion of want treatment responses given by patients and
surrogates.
Surrogate predictions were defined as accurate
if for a given treatment decision surrogates and patients gave the same dichotomized
response. Inaccurate predictions were categorized into overtreatment errors (surrogate predicted patient would want treatment
when patient actually did not) and undertreatment errors (surrogate predicted patient would not want treatment when patient
actually did). Proportion indexes were created for each scenario by summing
the number of accurate predictions within each scenario and dividing by the
number of decisions in that scenario. Multivariate analysis of variance (MANOVA)
was used to simultaneously compare these 9 indexes across experimental conditions.
Dunnett post hoc tests34 further compared each
of the 4 intervention conditions with the no-AD control condition. This process
was repeated with overtreatment and undertreatment indexes. To confirm the
results of the scenario-based analyses, an analogous set of analyses was conducted
using proportion indexes calculated for each treatment (collapsed across medical
scenarios) as dependent variables. Finally, to examine whether the interventions
were differentially effective for different subgroups of participants, MANOVAs
were reconducted using selected patient (sex, age, education, report of prior
AD completion), surrogate (sex, age, education), and patient-surrogate relationship
(type and length of relationship) characteristics as a second independent
variable with experimental condition.
To examine the effects of the interventions on the secondary outcome
measures, 2 MANOVAs were conducted. The first included the 5 patient-perceived
benefit measures as dependent variables. The second included the 5 surrogate-perceived
benefit measures as dependent variables. Subgroup analyses were again conducted
to examine for differential effects of the interventions for different groups
of participants.
POWER ANALYSIS
Setting  at .05 and statistical power at .80, our primary analyses
(MANOVAs comparing 5 groups with 9 dependent variables) require 58 observations
per condition to detect large effects and 105 observations per condition to
detect medium-size effects.35 Our secondary
analyses (MANOVAs comparing 5 groups with 4 dependent variables) require 72
observations per condition to detect medium-size effects. Accordingly, we
set 80 patient-surrogate pairs per condition as our target sample size to
provide us with adequate power to detect medium-size to large effects.
RESULTS
SAMPLE CHARACTERISTICS
Patients agreeing to participate in the study were significantly younger
than refusers (mean ages, 73 years vs 75 years; P<.001)
and less likely to be women (56% vs 62%; P = .03).
Participating patients were also significantly more likely than refusers to
report having made plans for future medical care (69% vs 57%; P = .001) and to rate having plans for future care as important (mean,
4.51 vs 3.84; P<.001).
No statistically significant differences across intervention conditions
were found on any patient or surrogate characteristic, confirming that randomization
was successful. Overall, patients and surrogates were predominantly European
American and Protestant, with relatively high socioeconomic status (Table 1). A slight minority of patients
reported having a living will or other AD, while a slight majority reported
having a durable power of attorney for health care. Surrogates were typically
spouses or adult children of patients and most (78%) reported knowing the
patient for 40 years or more.
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Table 1. Patient and Surrogate Characteristics*
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PATIENT PREFERENCES AND SURROGATE PREDICTIONS
Preferences for treatment varied significantly across illness scenarios
(P = .001). Patient preferences ranged from an almost
unanimous desire to receive all life-sustaining treatments in their current
health (mean proportion of want responses, 0.96) to high rates of treatment
rejection in the "coma no chance" scenario (mean, 0.12; Figure 2). Surrogate predictions showed a similar pattern to patient
preferences. Surrogates predicted greater desire for treatment than that expressed
by patients (overall mean proportion of want, 0.54 vs 0.44, respectively, P = .001). The interventions had no effect on preferences
or predictions.
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Figure 2. Patient preferences and surrogate
predictions.
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ACCURACY OF SUBSTITUTED JUDGMENT
Surrogates predicting patient preferences without the benefit of an
AD showed only modest accuracy in their substituted judgments (Table 2). Although surrogates in the no-AD condition demonstrated
relatively high accuracy in the "current health" scenario (mean proportion
of correct predictions, 0.94), surrogate predictions were correct less than
70% of the time on average for the "Alzheimer disease," "coma slight chance,"
"stroke no chance," "stroke slight chance," and "cancer no pain" scenarios
(overall predictive accuracy in the no-AD condition, 0.72). In general, accuracy
levels closely mirrored the degree of variation in patients' preferences with
surrogates predicting most accurately for scenarios in which most patients
either wanted (eg, current health) or did not want (eg, coma no chance) to
receive treatment. The majority of errors made by surrogates in the no-AD
condition were errors of overtreatment, with the ratio of overtreatment to
undertreatment errors ranging from 2:1 in the "current health" scenario to
greater than 3:1 in the "emphysema," "coma no chance," "coma slight chance,"
and "stroke no chance" scenarios.
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Table 2. Proportion of Accurate Surrogate Predictions, Overtreatment
Errors, and Undertreatment Errors by Experimental Condition*
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The AD interventions failed to improve the accuracy of surrogate substituted
judgment (scenario MANOVA, F36,1422 = 1.15, P = .25; treatment MANOVA, F16,1174 = 0.66, P = .83; Table 2). Dunnett
post hoc tests confirmed that neither no-discussion intervention produced
improvements in surrogate predictive accuracy (in any illness scenario or
for any type of medical treatment) beyond the level observed in the no-AD
control condition (overall mean predictive accuracy for HCD no discussion,
0.75, VLA no discussion, 0.73). Discussion was equally ineffective in improving
surrogate accuracy. Surrogates allowed to complete and discuss the ADs with
the patient were also unable to predict patients' treatment wishes at accuracy
levels that exceeded those of surrogates making predictions without the benefit
of an AD (overall mean predictive accuracy for HCD discussion, 0.73, VLA discussion,
0.69). Overtreatment and undertreatment errors showed no significant differences
across study conditions.
Planned subgroup analyses did not identify any subgroup of patients,
surrogates, or patient-surrogate relationships for which any of the AD interventions
produced levels of predictive accuracy greater than those observed in the
no-AD control condition.
PERCEIVED BENEFITS OF AD COMPLETION
More than 90% of patients in the no-AD condition believed that their
surrogate understood their life-sustaining treatment wishes at least "pretty
well" and were at least "pretty confident" that their surrogate could accurately
predict their wishes (top of Table 3).
Most no-AD patients also believed that their surrogate would honor their wishes
(89%), but fewer believed surrogates were comfortable making medical decisions
for them (69%). Surrogates' responses to analogous questions were similar
to those of patients (bottom of Table 3).
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Table 3. Responses to Perceived Benefit Questions by Experimental Condition
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Patient measures revealed a significant intervention effect (F20,1275 = 2.73, P<.001). Dunnett post hoc
tests indicate that both discussion interventions produced small but significant
increases in patients' perceptions of surrogate understanding relative to
the no-AD control condition (P<.001 for all; Table 3). The VLA discussion intervention
produced a similar increase in patients' perceptions of surrogate comfort
(P = .05). Subgroup analyses revealed that the effects
of the discussion interventions on perceived understanding and comfort were
limited to patients without a previously completed AD (intervention x
AD interaction, F20,1248 = 1.62, P = .04).
In the no-AD condition, patients with a prior AD believed their surrogate
to have both better understanding of their wishes (mean, 4.56) and greater
comfort with making end-of-life decisions (mean, 4.15) than did patients without
a previous AD (means, 4.20 and 3.34, respectively, P<.02
for all). The discussion interventions did little to improve the already high
level of perceived understanding and comfort in patients with a previous AD
(P>.39 for all). Both discussion interventions, however,
produced significant increases in perceived understanding (HCD discussion
mean, 4.89, VLA discussion mean, 4.84) and perceived comfort (HCD discussion
mean, 4.03, VLA discussion mean, 4.12) for patients without a previous AD
(P<.01 for all).
Surrogate measures did not differ by experimental condition (F20,1284 = 1.30, P = .17). Dunnett post hoc
tests, however, reveal that surrogates in the HCD discussion condition had
significantly higher scores (relative to the no-AD condition) on perceived
understanding of patients' wishes (P = .04), confidence
in their own predictive accuracy (P = .02), and belief
in the importance of having an AD (P = .01). The
VLA discussion intervention also produced a slight increase in surrogates'
perceived comfort (P = .08). Subgroup analyses revealed
no significant qualifications of these effects.
COMMENT
Phase 1 of the ADVANCE project revealed only modest accuracy of surrogate
decisions uninformed by instructional ADs. Most surrogates were spouses or
children of patients, had known the patient for 40 years or more, and were
confident in their ability to predict patients' treatment preferences. Patients
were equally confident in surrogates' predictive abilities. Despite this mutual
confidence, surrogates making predictions without the benefit of an AD inaccurately
predicted patients' desire to receive life-sustaining treatment in approximately
3 of every 10 decisions. Both the overall rate of prediction errors and the
tendency for surrogates to overpredict patients' desire for life-sustaining
treatment are similar to patterns shown in previous studies.11, 13, 14, 15
The novel contribution of our study is its unequivocal demonstration
of the ineffectiveness of both instructional ADs and patient-surrogate discussion
to improve the accuracy of surrogate substituted judgment. Empirical data
on surrogate inaccuracy have often been taken as support for ADs based on
the assumption that possession of a patient's instructional directive would
improve surrogate decisions.14, 36, 37
The results of our study challenge this assumption. Our randomized trial design
provided a stringent test of the ability of 4 different AD interventions to
improve the accuracy of surrogate predictions. The results were clear and
consistent across all 4 interventions and over every treatment decision examined.
The ineffectiveness of an AD document alone to improve surrogate decisions
might have been expected based on past writings skeptical of the usefulness
of written directives in the absence of a broader process of advance care
planning.25, 26 More surprising
was the finding that supplementing a written directive with guided patient-surrogate
discussion was equally ineffective. This was true despite the fact that many
patients and surrogates perceived the discussion interventions to improve
shared understanding of patients' treatment wishes.
The present study extends past research documenting numerous practical
problems facing attempts to improve the quality of end-of-life medical care.38, 39, 40, 41, 42, 43, 44, 45
The largest and best-known study, SUPPORT (Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatments),38
found that a multifaceted intervention designed to facilitate advance care
planning and improve patient-physician communication failed to produce significant
improvements in the care and outcomes of seriously ill hospitalized patients.
Our study differs from SUPPORT in several important ways. Although one goal
of the SUPPORT intervention was to facilitate the documentation of treatment
wishes in advance of decisional incapacitation, the study did not require
that patients complete detailed ADs or that family members or physicians discuss
or even read any directives that were completed. In fact, SUPPORT was crucial
in documenting that patients often complete directives containing little or
no clinically useful information,42 that completed
directives are often not placed or their existence even mentioned in medical
charts,38, 39 and that even when
a directive is seen by a physician, physicians infrequently discuss the directive
with the patient or the patient's family.38
In contrast, patients in the intervention arms of the ADVANCE project were
required to complete detailed instructional directives, surrogates were required
to read them, and some surrogates were required to discuss them with the patient.
Even under these ideal conditions, however, our interventions were completely
ineffective in improving the accuracy of surrogate substituted judgment. These
results suggest that even if all of the practical problems documented by SUPPORT
can be surmounted, instructional ADs may still fall short of their goal of
preserving patient self-determination because they fail to communicate information
in a way that improves surrogates' ability to honor patients' specific treatment
decisions.
POTENTIAL LIMITATIONS OF THE STUDY
Our patients and surrogates were generally healthy, well educated, and
European American. Compared with individuals in the same medical practices
who refused to participate, our patients were younger, more likely to be male,
and more positively inclined toward making plans for future medical care.
The percentage of patients reporting a previous AD was also higher than rates
reported in other studies.46, 47, 48, 49
Because attitudes toward end-of-life care have been found to vary across demographic
and ethnic groups,15, 50, 51, 52, 53, 54
the unique characteristics of our sample must be considered in evaluating
our results. Still, the fact that instructional ADs were found to be ineffective
in a relatively educated sample of individuals motivated to make plans for
their future medical care does not bode well for their success more generally.
It is possible that other AD documents might prove more effective in
enhancing the accuracy of substituted judgment. The directives used in our
study, however, included treatment instructions much more detailed than the
vague expression of wishes contained in most living wills.42
The HCD is a prototypical scenario-based AD with considerable empirical evidence
involved in its development.19, 20, 55, 56, 57
The VLA directive was developed from research showing that assessments of
health-related quality of life are based on outcome and function24, 58, 59
as well as suggestions that identifying a threshold for medical situations
perceived as "worse than death" might prove useful in end-of-life decision
making.26, 60, 61 It
could be argued that the VLA directive was too general to allow easy application
by surrogates to specific treatment decisions. The HCD, however, was equally
ineffective in improving surrogate decisions, even in scenarios that closely
resembled specific HCD scenarios (eg, the coma no chance and slight chance
scenarios). The fact that 2 detailed, empirically derived, but otherwise quite
different instructional directives proved equally ineffective in improving
surrogate substituted judgment supports the generalizability of our findings.
It is also possible that a more elaborate or long-term discussion intervention
might be effective in enhancing surrogate accuracy. Although intensive and
focused, our intervention was a brief, single-session discussion without the
guidance of a physician or any explicit educational component. We agree that
any beneficial effects of discussing end-of-life issues will likely depend
on the content and quality of that discussion. Past correlational research,
for example, has produced only inconsistent evidence of any association between
naturally occurring patient-surrogate discussion and surrogate accuracy.11, 14, 15, 16, 62, 63, 64, 65
What our results clearly show is that despite the faith placed by many physicians15, 26, 63 (and many of our
study participants) in the beneficial effects of discussing end-of-life issues,
a structured discussion almost certainly more rigorous than most naturally
occurring end-of-life discussions produced no discernible improvements in
patient-surrogate understanding.
Another possible limitation of this study is its reliance on a particular
set of hypothetical illness scenarios. Because the LSPQ was constructed based
on an extensive review of previous surrogate decision-making research to include
a broad range of realistic life-sustaining treatment decisions, it is unlikely
that inclusion of other hypothetical treatment choices would change the observed
results. Still, future research should examine the effectiveness of ADs with
patients facing chronic or progressive diseases for whom life-sustaining treatment
decisions are less hypothetical and specific prognostic outcomes can be anticipated
and discussed and preferences documented.66
Finally, we adopted a sample size and analysis strategy that maximized
the probability of finding intervention effects with the consequent risk of
inflating our likelihood of type I errors. Analyses were conducted to confirm
the lack of intervention effects across specific scenarios and treatments
and within different subgroups of patients, surrogates, and patient-surrogate
relationships. The consistency of negative results across analyses makes it
unlikely that any clinically important effect of our interventions was missed.
IMPLICATIONS FOR POLICY AND RESEARCH
The increasing institutionalization of ADs in US law and medical practice
stands in stark contrast to a growing body of research challenging the effectiveness
of advance care planning to produce specific improvements in end-of-life medical
care.38, 39, 40, 41, 42, 43, 44, 45
This inconsistency raises questions about whether policy and law should continue
to encourage the use of ADs and what directions empirical and ethical analysis
should take to help address this issue.
One direction for future research is to attempt to develop more effective
methods of improving the accuracy of surrogate decision making. This research
must move beyond simple documents to long-term intervention strategies and
should be guided by basic research in communication and human decision making
rather than the mixture of common sense, legal analysis, and political consensus
underlying many current approaches (eg, state-specific living will forms).
Moreover, additional consideration needs to be given to the difficult ethical
question of what constitutes an "acceptable" level of surrogate accuracy.
Interpretation of the present findings differs depending on the level of concordance
considered indicative of adequate surrogate understanding.
Alternatively, a recent review of the cumulative findings of SUPPORT67, 68 concludes that the initial guiding
assumption of that study—that enhanced patient-level decision making
is the key to quality end-of-life care—was fundamentally flawed. Research
may show that it is either impossible or prohibitively difficult to improve
the ability of surrogates to predict patient preferences for specific treatments
in specific medical circumstances. Surrogate decision making is likely subject
to the same limitations as other forms of "clinical" judgment.69, 70, 71
The accuracy of surrogate decisions may also be limited by the tendency of
patients' life-sustaining treatment preferences to change over time.72, 73, 74 Surrogates cannot
be expected to predict patients' future treatment wishes better than patients
can predict their own.68
Even if the accuracy of surrogate decision making has some theoretical
or practical limit, however, ADs may still have an important role in end-of-life
decision making. Although instructional directives may not improve decisions
made by family members, they may be more effective in improving the poorer
accuracy expected from decision makers with little or no past relationship
with the patient such as an emergency department physician (see article by
Coppola et al in this issue75). Advanced directives
are also likely to have a number of psychological benefits for patients and
their families, particularly if their completion serves to stimulate discussion
of end-of-life issues. Our discussion interventions were found to produce
a sense of mutual understanding and comfort with end-of-life decision making.
These effects were minimal for pairs in which the patient had previously completed
an AD but were more pronounced for pairs in which the discussion of end-of-life
issues was presumably more novel. Improved satisfaction with decision making
was also the only identifiable positive effect of the SUPPORT intervention.76
The question that remains is how to evaluate these psychological benefits
in the absence of actual improvements in the accuracy of substituted judgment.
Because law and policy advocating ADs has always been deeply rooted in the
preservation of patient self-determination,1, 6, 7
the goal of improving the accuracy of surrogate decision making is not easily
abandoned. At the same time, however, patients and families facing real decisions
about end-of-life treatment often seem less concerned with the ability to
predict specific treatment decisions than they are with gaining a general
sense of control over the dying process and reducing the level of burden on
surrogate decision makers.77, 78, 79, 80, 81
The results of the present study clearly challenge the effectiveness
of instructional ADs as a means of preserving patients' ability to control
specific treatment decisions near the end of life. What is less clear is the
extent to which the majority of patients and surrogates desire this level
of control and the relative value to assign to the goals of accurate surrogate
decision making vs psychological benefits in future policy development. A
final evaluation of the wisdom of advocating instructional directives as a
means of improving end-of-life medical care requires additional debate, and
eventually a broader consensus, regarding the specific outcomes we hope ADs
to achieve.
AUTHOR INFORMATION
Accepted for publication August 31, 2000.
Financial support for this study was provided by grant HS08180 from
the Agency for Healthcare Research and Quality, and grants from the Applied
Psychology Center at Kent State University and the Summa Health System Foundation.
We acknowledge the assistance of Helen Anderson, N. Sharleen Boley,
Miriam Curran, Mary J. Kennard, Pat Leonard, and Isabel Ricker in data collection;
Mary Jo Roach, PhD, in questionnaire design; and Janet Long in coordinating
data collection and preparation of the manuscript.
From the Department of Psychology and Social Behavior, University of
California, Irvine (Dr Ditto); Department of Psychology, Kent State University,
Kent, Ohio (Drs Danks, Fagerlin, and Gready); Department of Family Practice,
Summa Health System, Akron, Ohio (Dr Smucker); Department of Psychology, Pennsylvania
State University, Abington (Dr Bookwala); Department of Psychology, Monmouth
University, West Long Branch, NJ (Dr Coppola); Washington University Law and
Medical Schools, St Louis, Mo (Ms Dresser); Center for Developmental Science,
University of North Carolina, Chapel Hill (Dr Houts); Department of Psychology,
Radford University, Radford, Va (Dr Lockhart); and Department of Family Medicine,
Case Western Reserve University, Cleveland, Ohio (Dr Zyzanski).
Corresponding author: Peter H. Ditto, PhD, Psychology and Social
Behavior, 3340 Social Ecology II, University of California, Irvine, CA 92697-7085
(e-mail: phditto{at}uci.edu).
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