Annals of Internal Medicine

1 July 1997
Volume 127
Number 1
Annals of Internal Medicine
Patient Preferences for Communication with Physicians about
End-of-Life Decisions
Jan C. Hofmann, MD; Neil S. Wenger. MD; Roger B. Davis, ScD; Joan Teno, MD;
Alfred F. Connors Jr., MD; Norman Desbiens, MD; Joanne Lynn, MD; and Russell S. Phillips, MD,
for the SUPPORT Investigators
Background: Physicians are frequently unaware of patient preferences for end-of-life care. Identifying and exploring barriers to patient-physician communication
about end-of-life issues may help guide physicians and
their patients toward more effective discussions.
Objective: To examine correlates and associated outcomes of patient communication and patient preferences
for communication with physicians about cardiopulmonary resuscitation and prolonged mechanical ventilation.
have not discussed preferences for end-of-life care do not
want to do so. For patients who do not want to discuss
their preferences, as well as patients with an unmet need
for such discussions, failure to discuss preferences for cardiopulmonary resuscitation and mechanical ventilation
may result in unwanted interventions.
Ann Intern Med- 1^97:127:1-12,
For ;iutlioi* aflilialinns and current author ;iddrcssi;s. sec end of text.
Design: Prospective cohort study.
Setting: Five tertiary care hospitals.
Patients: 1832 (85%) of 2162 eligible patients completed
Measurements: Surveys of patient characteristics and
preferences for end-of-life care; perceptions of prognosis,
decision making, and quality of life; and patient preferences for communication with physicians about end-of-life
decisions.
Results: Fewer than one fourth (23%) of seriously ill patients had discussed preferences for cardiopulmonary resuscitation with their physicians. Of patients who had not
discussed their preferences for resuscitation, 58% were
not interested in doing so. Of patients who had not discussed and did not want to discuss their preferences, 25%
did not want resuscitation. In multivariable analyses, patient factors independently associated with not wanting
to discuiis preferences for cardiopulmonary resuscitation
inciudea being of an ethnicity other than black (adjusted
odds ratio [OR], 1.48 [95% CI, 1.10 to 1.99), not having an
advance directive (OR, 1.35 [CI, 1.04 to 1.76]), estimating
an excellent prognosis (OR, 1.72 [CI, 1.32 to 2.59]), reporting fair to excellent quality of life (OR, 1.36 [CI, 1.05 to
1.76]), and not desiring active involvement in medical
decisions (OR, 1,33 [CI, 1.07 to 1.65]). Factors independently associated with wanting to discuss preferences for
resuscitation but not doing so included being black (OR,
1.53 [CI, 1.11 to 2,11]) and being younger (OR, 1.14 per
10-year interval younger [CI, 1.04 to 1.25]).
Conclusions: Among seriously ill hospitalized adults,
communication about preferences for cardiopulmonary
resuscitation is uncommon. A majority of patients who
U
nderstanding patients' preferenees for end-oflife eare and their desire lo communicate with
their physicians about end-of-life care decisions is of
increasing interest. Recent studies (1-4) demonstrated that although n majority of surveyed patients
(both inpatient and ambulatory) want to discuss
cardiopulmonary resuscitation and other end-of-life
decisions with their physicians, less than 50% of
patients have actually done so. Physicians and patients' family members are frequently unaware of
patient preferences for end-of-life care; this suggests
that communication about these issues may be inadequate. Several studies have shown that concordance between substituted judgments by either physicians (5-9) or family members (5. 8, 10, II) and
patients' actual wishes is no greater than that
caused by chance. Problematic decision making and
the perception that patients receive unwanted treatments have prompted appeals for improved physician-patient communication and earlier elicitation
of patient preference:;, even though these preferences may ehange over time (12-18).
Despite the importance of early communication,
most patients and physicians have not communicated about end-of-life decisions, and most patients
have not completed acvance directives (19-21). Hypothesized barriers to ;nd-of-life discussions include
physician discomfort about discussing these issues,
perceived time constraints, and variation in physician attitudes about the appropriateness of sueh
©1997 American College of Physicians
1
discussions (22, 23). Little research has evaluated
patient barriers to such communication, and little is
known about how patient characteristics and perceptions affect their preferences for communicating
with physicians about end-of-life care (24). Identifying and exploring barriers to patient-physician
communication about end-of-life issues (22, 25, 26)
may help guide physicians and their patients toward
more effective discussions and may help physicians
provide their patients with more appropriate and
useful information.
To improve our understanding of faetors influencing patients' decisions about end-of-life care, we
examined correlates and associated outcomes of patient communication and preferences fbr communication with physicians about cnd-of-life decisions.
Specifically, we examined communication and preferences about cardiopuimonary resuscitation and
prolonged mechanical ventilation among patients
enrolled in the Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatment
(SUPPORT), a prospective multiccnler study of ihc
preferences, treatments, and outcomes of seriously
ill hospitalized patients.
Methods
Study Design
This anaiysis was performed using data collected
during phase Ii of SUPPORT. The overall study
objectives and methods have been published elsewhere (27). This study had two phases: an observational phase (phase i) and a subsequent intervcntiona! phase (phase TI). Phase 11 was a controlled
trial of an intervention intended to improve care
provided to seriously ill hospitalized patients (28).
During this phase, clinicians randomly assigned to
the intervention were given information about their
patients' prognoses and preferences for care and
were assigned a clinical nurse specialist to facilitate
symptom control and effective communication with
patients. The study sample for the current analysis
consisted of patients who were enrolled in phase IT
of SUPPORT between January 1992 and January
1994 and were hospitalized at one of five participating clinical sites (Beth Israel Hospital. Boston. Massachusetts; University of California Medical Center,
Los Angeles, California; MetroHealth Medical Center, Cleveland, Ohio; Duke University Medical Center,
Durham. North Carolina; and Marshfield Clinic-St.
Joseph's Hospital, Marshfieid, Wisconsin).
Patients enrolled in phase I of SUPPORT were
not included in this analysis because we did not ask
specific questions about patient preferences for discussion with their physicians about end-of-life issues
during phase I. Because the phase II intervention
did not affect care processes or outcomes (28), the
intei^vention and control patients arc combined in
this analysis. Patients were eligible if they met defined criteria for at least one of the following nine
diagnostic categories: acute respiratory failure,
chronic obstructive lung disease, congestive heart
failure, cirrhosis, nontraumatic coma, metastatic colon cancer, advanced non-small-cell lung cancer,
muitiorgan system failure with sepsis, or multiorgan
system failure with a malignant condition. The
6-month mortality rate in ihese patients was approximately 50%. Patients were excluded if they did not
speak English; were nonresident foreign nationals,
younger than 18 years of age, or pregnant; had
.sustained head trauma; had been hospitalized with
an expected stay of less than 72 hours; had AIDS;
or had died or were discharged within 48 hours of
study entiy.
Data Collection
Patients were screened for study entry at the
time of hospital admission; patients in intensive care
units were screened every day. Sixty-four percent of
patients in phase Ii of SUPPORT were enrolled on
the first day of their hospitalization. Data were
gathered by medical record review and interviews
with patients between days 2 and 6 after enrollment.
Information collected by chart review included patient demographic data (age, sex, study site, type of
insurance, attending physician service) and information on patient clinical characteristics (diagnosis,
acute physiology score on day 3 after study entry,
and comorbid conditions). The acute physiology
score is the physiology-based component of Acute
Physiology and Chronic Health Evaluation Iii
(APACHE Iii) and includes vital signs, laboratory
measurements, and the Glasgow Coma Scale score
(29). By using a list developed as part of the
APACHE II scoring system, we assessed comorbid
conditions by reviewing charts and calculated a comorbidity score by summing the number of comorbid conditions; the score ranged from 0 to 7 (30).
Objective estimates of patients' 2-month survival
were calculated by using the SUPPORT prognostic
model (31).
Patients were interviewed between days 2 and 6
after study enrollment by trained interviewers who
used standardized techniques to obtain information
on patient characteristics; preferences; and perceptions of symptoms, function, and quality of life.
Patients' self-reported race, marital status, religion,
living situation, employment status, levels of income
and education, and function 2 weeks before admission were assessed. Function was determined by
using two different measures: 1) the number of de-
July 1997 • Annals of Internal Medicine • Vcilumc 127 - Number 1
pendencies among seven activities of daily living
using a revised version of the Katz Activity of Daily
Living Scale (32-34) and 2) a revised version of the
Duke Activity Statu.s Index (35. 36). Quality of life
was measured by asking patients to rate their overall quality of life on a five-point descriptive scale
(1 = excellent; 5 = poor). Subjective estimates of
prognosis were obtained by asking patients to estimate their probability of surviving 2 months beyond
study entry. Possible responses included "90% or
better," "about 75%," "about 50-50," "about 25%."
and "10% or less." Patients" self-reports of having
an advance directive and interest in participating in
medical decisions (37, 38) were assessed. For advance directives, patients were asked whether they
currently had a signed durable power of attorney or
living will. Patients' desires for active involvement in
decision making were assessed by using the Krantz
scale (37, 38). In a series of seven questions, patients were asked whether they preferred to rely on
their physician or nurse to make decisions or whether
they preferred to direct Ihe decision-making process
themselves. Patients were classified as wanting active
involvement in decision making if they indicated a
desire for active decision making in their answers to
at least 4 of 7 questions.
Patients were asked the following question about
their preference for cardiopulmonary resuscitation:
"As you probably know, there are a number of
things doctors can do to try to revive someone
whose heart has stopped beating, which usually includes a machine to help breathing. Thinking of
your current condition, what would you want doctors to do if your heart ever stopped beating?
Would you want your doctors to tr)' to revive you or
would you want your doctors not to try to revive
you?" Responses were coded as; I) patient wants
resuscitation. 2) patient does not want resuscitation.
3) patient wants resuscitation but not intubation, or
4) patient doesn't know. For this analysis, patients
who wanted resuscitation but no intubation {5%)
were grouped with patients who wanted full cardiopulmonary resuscitation, because in both groups patients expressed preferences for some type of lifeextending treatment. The 12% of patients who
answered "don"t know" were excluded from the
analysis. Patients were next asked, "Have you specifically told your doctors that you want doctors to:
(1) revive you, (2) not revive you, or (3) don t know,
and were those doctors at this hospital?" Patients
who had not discussed these preferences were then
asked, "Would you like the opportunity to discuss
this with your doctor(s) here?" Possible responses
were 1) "yes," 2) "no," or 3) ''don't know." Testretest reliability (exact agreement) for the question
on cardiopulmonar\' resuscitation, assessed within
24 hours of the initial interview for 90 patients, was
93% (39).
In a separate portion of the interview, we asked
patients about their willingness to live while indefinitely attached to a breathing machine. The five
possible responses were "very willing," "somewhat
willing," ""somewhat unwilling," "very unwillitig," or
"would rather die." For this analysis, responses for
"very willing" and "somewhat willing" were grouped
together, as were the last three responses. Patients
were also asked whether they had discussed these
preferenees with their physicians and, if not,
whether they would like to.
Outcome data were obtained by using medical
record review, interviews with patients, and the National Death Index. Outcomes of interest were inhospital, 2-month, and 6-month mortality rates;
presence of do-not-resuscitate (DNR) orders in the
charts of patients who did not want cardiopulmonary resuscitation; irean time to DNR orders; and
number of unwanted resuscitation attempts. Figures
for 2-month and 6-nonth mortality rates were cumulative and included patients who died during the
study hospitalization For patients who received a
DNR order during hospitalization. the mean time to
the order was defin_"d as the average number of
days to a DNR order from study entry. The number
of unwanted resuscitation attempts was defined as
the number of patients who did not want cardiopulmonary resuscitation and were subsequently resuscitated at least once.
Statistical Analysis
We focused our analysis on patient-physician
communication about two end-of-life issues: preferences for discussion about cardiopulmonary resuscitation and preferences for discussion about prolonged mechanical ventilation. In our analysis, we
sought to identify factors associated with patients
who had discussed preferences for resuscitation and
prolonged ventilation with physieians. those who
wanted to discuss these preferences but had not yet
done so, and those who did not want to discuss
these preferenees.
For analyses of thtse outcomes, we selected candidate independent variables that have been shown
to be related to the dependent variables (40-47) or
those that, on the biisis of our clinieal experience,
we thought were related to the dependent variables.
These independent \ariables were age, sex. race,
marital status, religion, income, employment status,
level of education, living situation, health insurance
coverage, study site, attending physician service, diagnostic category, number of eomorbid conditions.
I July 1997 • AnttaLs of Internal Medicine • Volume 127 • Number 1
patient's subjective estimate of 2-month survival, patient's assessment of quality of life, self-report of
advanec direetive, patient's preferences for cardiopuimonary resuscitation and prolonged mechanical
ventilation, patient's interest in active involvement
in medieal decision making, functional status (scores
on aetivities of daily living scale and Duke Activity
Status Index), acute physiology score, and objective
estimates of 2-month survival (according to the
SUPPORT prognostic model).
In the bivariable analyses of factors, we used the
chi-square test for categorical variables and the Wileoxon rank-sum tesi for continuous variables. This
analysis was performed on all independent variables
to determine eligibility for inclusion in multivariabie
models {inclusion criterion, P < 0.20). To adjust for
potential confounding faetors, we ehose a backward
selection model (stay criterion, P^O.OS). For the
multivariable analyses, logistic regression was used
to identify faetors independently assoeiated {twotailed P < 0.05) with each of the three categories of
dependent (outcome) variables adjusted for diagnosis, physician specialty group, study site, and objective estimates of prognosis. The multivariable models reported included all factors significant at a P
value less than 0.05 in either the cardiopulmonary
resuscitation or prolonged mechanical ventilation
models for each of the three comparisons. Inclusion
of the confounding variables that we identified had
no substantial effect.
Patient outcomes assoeiated with communication
and preferences for communication were compared
for the three groups defined above; we used the
chi-square test to compare proportions.
Role of Sponsor
This study was funded by the Robert Wood
Johnson Foundation. Representatives of the Foundation had no role in gathering, analyzing, or interpreting the data and did not review the manuscript
before it was submitted for publication.
completed for 1832 (response rate, 85%). Of eligible patients who were not interviewed, 298 (90%)
refused to be interviewed and 32 (10%) were not
interviewed for other reasons. When compared with
those interviewed, the 330 patients who were not
interviewed were more likely to be of an ethnicity
other than black (94% compared with 84%; P<
0.001) and to have worse prognoses (SUPPORT
prognostie estimates for survival at 2 months, 71%
compared with 76%; P< 0.001). The two groups
were similar in age, sex, and religious preferences.
Patient Preferences for Cardiopulmonary
Resuscitation
Data on patients' desires to discuss preferences
for cardiopulmonary resuscitation were available for
1589 of 1832 patients interviewed (87%). Data on
these patients are given in Table 1.
Of the 1589 patients who responded to the question on eardiopulmonary resuscitation preferences,
366 (23%) had discussed these preferences with
their physicians before their initial interview and
1223 {77%) had not {Figure, top). Of the 1223
patients who had not had such a discussion, 516
(42%) said that they wanted to and 707 (58%) said
that they did not want to. Of the 1589 patients with
available data, 1113 {70%) wanted physieians to ti^
to revive them and 476 (30%.') did not.
As shown in Table 2, patients who had discussed
preferences for cardiopulmonary resuscitation were
about twice as likely to have an advance direetive
and to want to forego resuscitation than patients
who had not discussed these preferences. Compared
with patients who had not discussed preferences for
resuscitation, patients who had discussed preferences were less likely to estimate a 2-month survival
probability of 90%' or greater and were more likely
to have a iower mean SUPPORT prognostic estimate for sui'vivlng 2 months. Patients who had not
discussed and did not want to discuss their prefcrenees for cardiopulmonai7 resuscitation had preferences for this intervention similar to those of
patients who wanted to discuss resuscitation but
had not done so.
Results
Response Rates
Multivariable Correlates of Having Discussed
Preferences for Cardiopulmonary Resuscitation
Of 4804 patients enrolled in phase II of SUPPORT, 2162 (45%) were eligible for interview between the second day and the sixth day after study
entry. Patients were ineligible if they were eomatose
or intubated {n = 1391), could not communicate for
other reasons {n = 366), had died (n = 368), had
been discharged during the interview window (// =
239), or were eognitively impaired (n = 278).
Among the 2162 eligible patients, interviews were
ln multivariable analyses that adjusted for diagnosis, study site, physician specialty group, and objective estimate of prognosis, patient factors independently associated with having discussed preferences
for cardiopulmonary resuscitation included not
wanting resuscitation (adjusted odds ratio [OR],
2.15 [95% CI, 1.64 to 2.83]). having an advance
directive (OR, 2.24 [CI, 1.66 to 3.01]), desiring active involvement in medieal decisions (OR. 1.48
4
I July 1997 • Annals of Internal Medicine • Voiiime 127 • Number
Table 1. Characteristics of Patients with 1Preferences
about Cardiopulmonary Resuscitation (n = 1589)*
Characteristic
Demographic characteristicst
Median age (25th, 75th percentile), y
Wom(?n, %
Race, %
White
Biark
Other
Median education (25th, 75th percentile),
y
Living alone, %
Annufii income, %
<$nooo
$11 000-$24 999
$25 000-150 000
>$50 000
Insurance type, %
Medicare only
Medicare and Medicaid
Medicare and private
Private oniy
Medicaid oniy
None
Reiigion, %
Protestant
Cathohc
Jewish
Other
None
Ciinicai fiictorst
Median acute physiology score at study
entiy(25th, 75th percentile)
Median comorbjd conditions (25th, 75th
percentile), n
Median SUPPORT prognostic estimates of
2-month survival (25th, 75th
percentile), %
Patient preferences and perceptionst
Patient's subjective estimate of 2-month
survival, %
-75%
-50%
Don't i<now
Patient s assessment of quality of life, %
Excellent
Very good
Good
Fair
Poor
Patient's report of advance directive, %
Patient!i desiring active involvement in
medical decisions, %
Patients wanting cardiopulmonary
resuscitation, %
Ciinicai outcomes, %
In-hospital mortaiity rate
2-month mortaiity rate
6-month mortaiity rate
Vaiue
63 (52, 73)
42
79
16
S
12(10,13)
24
49
25
16
10
23
6
26
29
IF
3
54
28
7
.4
7
21 (11,32)
physician specialty group, and objective estimate of
prognosis, the effects of these potential confounders
were accounted for during examination of potential
associations between selected patient factors and a
specific outcome (such as having discussed preferences for cardiopulmonary resuscitation). For example, the data presented in the preceding paragraph
show that among cur patients who did not want
cardiopulmonary resuscitation, and after adjustment
for the above-mentioned factors, the odds of having
discussed resuscitaticjn were approximately twice as
great as the odds among patients who wanted resuscitation.
Multivariable Correlates of Wanting To Discuss
Preferences for Cardiopulmonary Resuscitation
but Not Having Done So
in multivariable analyses that adjusted for diagnosis, study site, physician specialty group, and objective estimate of prognosis, being black (adjusted
OR, 1.53 [CI, l.il to 2.11) and befng younger (OR,
1.14 per 10-year interval younger [Cl, 1.04 to 1.25])
were independently associated with wanting to discuss preferences for cardiopulmonary resuscitation
but not having done so.
2(1,3)
80 (70, 87)
71
s
6
1
17
"§•
15
24
30
n
47
ro
4-c4
14.0.
293
' 5UPP0RT " Study to Understand Prognoses and Preferences for Outcomes and Risks of
Treatment
t lndependi?nt uariables based on information available on the third study day.
[1.13 to 1.94]), estimating a poor prognosis (OR,
1.90 [CI, 1.32 to 2.74]). having more dependencies
in activities of daily living (OR, 1.12 per dependency [CI, 1.04 to 1.21]), living alone (OR, 1.47 [CI,
1.08 to 2.00]), having an income of $11000 to
$25 000 per year (OR, 1.41 [CI, 1.03 to 1.94]), and
having more comorbid conditions (OR, 1.12 per
comorbid condition [CI, 1.10 to 1.24]).
By adjustment for patient diagnosis, study site.
Multivariable Correhstes of Not Wanting To
Discuss Preferences for Cardiopulmonary
Resuscitation
In multivariable analyses that adjusted for patient
diagnosis, study site, physician specialty group, and
objective estimate oJ' prognosis, patient factors independently associated with not wanting to discuss
preferences for cardiopulmonary resuscitation included being of an ethnicity other than black (adjusted OR, 1.48 [CI, 1.10 to 1.99]), not desiring
active involvement in medical decisions (OR, 1.33
[CI, 1.07 to 1.65]), not having an advance directive
(OR, 1.35 [CI, 1.04 to 1.76]), estimating an excellent
prognosis (OR, 1.72 CI, 1.32 to 2.59]), and reporting fair to excellent quality of life (OR, 1.36 [CI,
1.05 to 1.76]) (Table 3).
Outcomes Associated with Patient Preferences for
Communication about Cardiopulmonary
Resuscitation
Patients who wanted to discuss preferences for
cardiopuimonary resuscitation but had not yet done
so and patients who had not discussed and did not
want to discuss their preferences were similar with
respect to SUPPORT prognostic estimates and inhospital, 2-month, and 6-month mortality rates. For
most outcome measures (except in-hospital mortality), patients who had discussed their preferences
for resuscitation were significantly different from pa-
1 July 1997 • Atinals of Internal Medicitie • Volume 127 • Number 1
Wants CPR
(1113 [70%])
Does not want CPR
(476 [30%])
2. Have you told your physician?
Has discussed with physician
(366 [23%])
Has not discussed with physician
(1223 [77%])
3. Do you want discussion?
Wants discussion (unmet need)
(516 [42%])
Does not want discussion
(707 [58%])
Do you want CPR?
1. Do you want prolonged
mechanical ventilation?
Wants prolonged
mechanical ventilation
(192
Does not want prolonged
mechanical ventilation
(1381 [88%])
2. Have you told your physician?
Has discussed with physician
(185 [12%])
Has not discussed with physician
(1388 [88%])
3. Do you want discussion?
Wants discussion (unmet need)
(279 [20%])
Does not want discussion
(1109 [80%])
Figure. Flow chart of patients' responses to questions about cardiopulmonary resuscitation {CPR) and prolonged mechanical ventilation.
Shown are the results of patients' responses to three questions on preferences about cardiopuimonary resuscitation and prolonged mechanical ventiiation
(asked in the crder shown), which were part of a larger patient questionnaire about preferences for care administered 2 to 6 days after study enrollment.
tients w[io had not discussed these preferences (Table 4). For example, patients who had discussed
their preferences were significantly more likely lo
die within 2 or 6 months after study entry. However,
patients who did not want a discussion (or who
wanted a discussion but had not yet had one) had a
substantial risk for death; their in-hospital mortality
rate was 4.3%, and their 6-month mortality rate was
26.2%. Patients who did not want cardiopulmonary
resuscitation and had discussed this preference with
their physician or physicians were substantially more
likely to have DNR orders written than were patients who did not want resuscitation but had not
discussed their preferences (45% compared with
21%; P < 0.001). Only 8 (<2%) of the 476 patients
who did not want resuscitation underwent this procedure; this number was too small to allow meaningful comparisons between patient groups.
I July 1991 • .Annals of Internal Medicine • Volume 127 • Number 1
Table 2.
Relation of Preferences and Prognostic Estimates to Patients' Communication about
Cardiopuimonary Resuscitation*
Preferences or Estimates
Preferences for Discussion about CPR
1. Discussed with
Physician (n = 366)
Does not want CPR, nIn (%)
Has advance directive, n/n (%}
Patients' estimate of 2-month
surviviil s90%, n/n (%)
SUPPORT 2-month prognostic
estimates, %
Mean (95% CI)
Median (25th, 75th
percentile)
*
t
t
5
2. Unmet Need
{n = 516)t
P Valued:
3. Did Not Want
Discus5ion (n = 707}
1 and 2 Compared
with 3
181/366(50)
132/365(36)
118/516(23)
95/515(19)
177/707(25)
141/704(20)
<Q.OQ1
207/278 (75)
371/435(85)
518/578(90)
<O;GQI
73 (71-75)
77 (76-79)
77(76-78)
78 (66, 85)
81 (72, 88)
81 (71,87)
2 Compared
with 3
>.0.2
>0,2
0.13§
0;04
>0.2
1 Compared
with 2 and 3
<0.001
<0,001
<0.001
>0,001§
CPR iardiopuimonary resuscHalion: StJPPORT = StLidy lo Undersiand Prognoses and Preferences lor Outcomes and Risks of Freatmeni.
Unmet need indicates thar patients wanted to discuss preferences for cardiopuimonary resuscitation but had not done so.
Unless otherwise noted. P values were derived by using a chi-squate test.
P value derived by using a r-test.
Patient Preferences for Prolonged Mechanical
Ventilation
Patients who responded to the questions about
mechanical ventilation were similar to those who
responded to the questions about cardiopuimonary
resuscitation (Table 1). Of 1573 patients who responded to the question on preferences for prolonged mechanical ventilation, 185 (12%) had discussed these preferences with their physicians
before their initial interview and 1388 (88%) had
not (Figure, bottom). Of the 1388 patients who had
Table 3.
not had such a discussion, 279 (20%) said that they
wanted to and 1109 (80%) said that they did not
want to.
Of the 1573 patients with available data, 192
(12%) were willing to accept prolonged mechanical
ventilation (Figure, hottom). Patients who had discussed preferences far mechanical ventilation were
more likely to have an advance directive and to
want to forego prolonged ventilation than patients
who had not discussed these preferences {P <
0.006). Patients who had not discussed and did not
Multivariable Analysis: Factors Associated with Preferences for Discussion about Cardiopuimonary Resuscitation
and Prolonged Mechanical Ventilation*
Variable
Factors associated with having discussed preferences for CPR and PMVt
Not wanting CPR
Having advance directive
Desiring active involvement in medicai decisions
Subjective estimate of poor prognosis4:
Subjective estimate of unknown prognosis*
Increased dependency in aaivities of daily living
Living aione
Middle income ($11 000-525 000/y)§
More comorbid conditions
Factors associated with wanting to discuss preferences for CPR and PMV
but rot having done so||
Black racel!
Decreasing age (per decade)
Reiigion other than Judaism
Poor quality of life**
Factors associated with not wanting to discuss preferences for CPR and
PMV-t
Race otnerthan black
No desire for active involvement in medical decisions
No adviince directive
Subjective estimate of excelient prognosis**
Fair to excellent quality of iife
Adjusted Odds Ratio for CPR
(95% CI)
Adjusted Odds Ratio for PMV
(95% CI)
2.15(1,54-2.83)
2.24(1.66-3.01)
1.48(1,13-1,94)
1,90(1,32-2.74)
1,41 (1.00-1.99)
1.12(1.04-1.21)
1,47(1,08-2,00)
1,41 (1.03-1,94)
1,12(1,01-1.24)
1,95(1,35-2,83)
2,40(1,62-3.56)
1,34(0,93-1,94)
2,12(1,33-3,39)
1.94(1,23-3.06)
1,00(0.91-1.11)
1,06(0.69-1,52)
1,37(0,89-2,11)
1.24(1,10-1,39)
1,53(1,11-2,11)
1,14(1,04-1.25)
1,57(0,92-2,70)
1.24 (0,93-1.66)
1.30(0,91-1.87)
1,05(0.94-1.16)
2,23(1,05-4,73)
1.59(1.16-2.16)
1,48(1,10-1,99)
1.33(1.07-1,65)
1.35(1.04-1.76)
1.72(1.32-2.59)
1.36(1.05-1,76)
1,24(0.90-1,73)
1,17(0.92-1.48)
1,55(1,25-2.19)
1,70 (1.22-2.35)
1,63<1.26-2,12)
- Models adjusted for patient diagnosis, physician specially, study site, and objective estimate ot prognosis. CPR - cstdiopuirtionary resuscitalion, PMV = prolonged mechanical
ventilsticin.
t Reference group consists of patients who have not discussed preferences for CPR or PMV
* Compari>d with patients' estimate of evcellent prognosis (>90% survival al 2 months).
§ Compared with low income (< S11 000/y)
II Reference group consists of patients who have not discussed and do not want lo discuss preferences for CPR or PMV.
II Comparf'd with persons who are not black (white, Asian, and Hispanic).
* ' Compared with fair to eKCelleni quality of life,
f t Reference group consists of patients who have discussed or wan) to discuss preferences tor CPR or PMV
* t Compared with estimate of poor or unknown prognosis.
I July 1997 • Annals of Internal Medicine • Volume 127 • Number]
Table 4.
Outcomes Associated with Patients' Preferences for Communication about Cardiopuimonary Resuscitation*
Preferer>ces for Discussion about CPRt
Outcome
1. Discussed with
Physician (n = 366)
Died in hospital, %
Died in 2 months, %
Died in 6 months, %
Do-not-resuscitate order in chart for
patients not wanting CPR, nIn (%)
Mean time to do-not-resuscitate
order (range), d§
Unwanted resuscitation attempts
(n = 8), nIn (%n
4.6
ia.7
39,6
81/181 (44,8)
4 0(1-82)
3/181 (1,7)
2. Unmet Need
(n = 516)
4.3
11.€
25.2
23/118(19,5)
10-2(1-56)
1/118(0-8)
P Value*
3, Did Not Want
1 and 2 Compared
with 3
Discussion (n = 707)
4-4
12.7
26,9
39/177(22,0)
103(1-121)
>0,2
0.20
0.06
2 Compared
with 3
1 Compared
with 2 and 3
>0,2
>0.2
>0.2
>0-2
>0,001
<0.001
0.003
>0.2
<0.001
0.0511
>0.2||
0.000311
4/1 77 (2,3)
* CPR = (-artliopulmonary resuscitalion
t UniTiet need indicates Ihal lhe patient wanted to discuss preferences for cardiopulirionary resuscitation bul had not done so
t Unless otherwise noted, P values were derived by using a chi-square test.
§ Average number ai days to do-not-resuscitate order from study entry for palients who received thts order during hospitalization.
i| P value derived by using a f-test,
H Unwtinted lesuscitation attempts refers to the number of patienis for whom resusciiation was attempted after interview divided by the number ot palients who reported not wantinc
caidiopulnionary resuscitation.
want to discuss their preferences for prolonged ventilation had preferences for this intervention that
vi'ere similar to those of patients v^'ho wanted to
discuss mechanical ventilation but had not done so
{P > 0.2). Patients who had discussed preferences
for prolonged ventilation were less likely to estimate
a 90% or greater 2-nionth survival rate and were
more likely to have a lower mean SUPPORT prognostic estimate for surviving 2 months than patients
who had not discussed these preferences ( P < 0.001).
ln multivariable analyses that adjusted for diagnosis, study site, physician specialty group, and objective
estimate of prognosis, patient factors independently
associated with having discussed preferences for
prolonged mechanical ventilation included not wanting cardiopuimonary resuscitation (adjusted OR,
1.% [CI, 1.36 to 2.83]), having an advance directive
(OR. 2.40 [CI. 1.62 to 3.56]), estimating a poor
prognosis (OR, 2.12 [CI. 1.33 to 3.39]) or an unknown prognosis (OR, 1.94 [CI, 1.23 to 3.06]), and
having more comorbid conditions (OR, 1.24 per
comorbid condition [CI, 1.10 to 1.39]). ln similar
analyses, not being Jewish (OR, 2.23 [CI, 1.05 to
4.73]) and reporting a poor quality of life (OR. 1.59
[CI, 1.16 to 2.16]) were independently associated
with wanting to discuss preferences for prolonged
ventilation but not having done so. Patient factors
independently associated with not wanting to discuss
preferences for prolonged ventilation included not
having an advance directive (OR, 1.66 [CI, 1.26 to
2.19]), estimating an excellent prognosis (OR, 1.70
[CI, 1.22 to 2.35]), and reporting fair to exeellent
quality of life (OR, 1.63 [CI, 1.26 to 2.12]).
Discussion
For these seriously ill hospitalized adults, communication about preferences for cardiopuimonary
resuscitation and prolonged mechanical ventilation
was uncommon. Only 23% of patients had discussed
preferences for resuscitation with their physicians at
the beginning of their hospitalization, and only 12%
had discussed preferences for prolonged ventilation.
These data are consistent with findings showing that
physicians often do not communicate with patients
about patient preferences for cardiopuimonary resuscitation (4, 48, 49) and that patients often do not
discuss end-of-life issues with their physicians (3, 4,
49, 50). Surprisingly, of patients who had not discussed cardiopuimonary resuscitation preferences
with their physicians, only 42% expressed a desire
to talk about their preferences with their physicians.
Of patients who had not discussed their preferences
about prolonged meehanical ventilation with their
physicians, only 20% said that they wanted to talk
about their preferences.
Unlike a previous study by Reilly and colleagues
(1), which showed that only 19% of hospitalized
patients had not discussed and did not want to
diseuss advance directives, our analysis indicates
that a majority of seriously ill inpatients had not
discussed and were not interested in discussing preferences for cardiopuimonary resuscitation (58%) or
prolonged mechanical ventilation (80%). Patients
who had not discussed and did not want to discuss
their preferences for resuscitation were similar to
patients who had discussed or were interested in
discussing these preferences in terms of their SUPPORT prognostic estimates and mortality rates, but
their subjective estimates of survival at 2 months
were somewhat higher. Patients who had not discussed and did not want to discuss their preferences
for resuscitation did not, in fact, have better prognoses, but they may have perceived that they had
better prognoses than patients who had discussed or
wanted to discuss these preferences. One might understand patients' reluctance to discuss end-of-life
I July [9^7 • Annals of Internal Medicine • Voliiinc 127 • Numher 1
issues if, in fact, these discussions are irrelevant. Yet
both patients who did and those who did not want to
discuss these issues had the same risk for dying, as
measured by the SUPPORT prognostic estimates of
surviving 2 months. Furthermore, many of these
patients who had not discu.ssed and did not want to
discuss end-of-life issues preferred to forego resuscitation (25%) and did not want prolonged ventilation (87%). Eighty percent of patients who did not
want to diseuss end-of-life issues reported not having an advance directive.
Although 70% of patients in our study indicated
that they would want cardiopuimonary resuscitation,
only 12% were willing to accept prolonged mechanical ventilation. Other studies have shown that most
acutely ill patients desire resu.scitation and mechanical ventilation and are more likely to want
these treatments if the outcome is perceived to be
favorable (9, 51, 52); fewer patients want either
measure if they are faced with prolonged ventilation (53, 54).
In an examination of factors that are independently associated with patients having discussed
preferences for cardiopuimonary resuscitation, multivariable analyses showed that patient characteristics indicative of desiring a more "active" patient
role (having an advance directive and desiring active
involvement in medical decisions) were strongly associated with patients not wanting resuscitation.
Characteristics indicative of a worsening prognosis
were also independently associated with patients
having discussed preferences for resuscitation. Similar patient characteristies were associated with having discussed preferences for prolonged ventilation.
Although most studies indicate that patients are less
inclined to opt for aggressive treatment as their
perceived level of future cognitive and physical
function and quality of life declines (10, 51, 53, 55,
56), previous work by Uhlmann and Pearlman (57)
and Danis and colleagues (58) shows that patients'
perceptions of current quality of life do not seem to
affect their desire for intensive, life-sustaining medical care.
Previous investigators have found similar percentages of patients who are interested in discussing
end-of-life care preferences with their physicians but
have not done so (1, 3, 39). Our analysis showed
that being blaek and being younger were strongly
associated with wishing to discuss preferences for
cardiopuimonary resuscitation but not having done
so. Although studies have shown racial differences
with respect to access to medical care (59. 60),
management of patients with acute (61) and chronic
(62) life-threatening conditions, and assignment of
DNR orders (63). few studies have documented racial differences in patient-physician communication.
In a study of patients with AIDS, Haas and col] July
leagues (2) found that being black was a correlate
of having an unmet need to discuss preferences for
end-of-life care. Our findings are consistent with
those of Caralis anti colleagues (64), who showed
that among patients who had not discussed preferences for life-prolonging treatment, more black
(63%) and Hispanic persons (62%) desired such
discussions than did non-Hispanic white persons
(39%). Just as nonwhites receive less intensive use
of resources (65-70), they may also be less likely to
have their needs met for discussions about care
preferences at the end of life. The association between younger age end unmet need for end-of-life
discussions may indicate that physicians are more
open to discussion and more likely to bring up this
topic with older patients who have chronic progressive illness than with younger patients whose severity of illness is similar. Previous studies (9, 71) suggest that physicians often believe that patients share
their goals and values with respect to cardiopuimonary resuscitation and therefore do not ask patients
about their opinions and preferences.
Our anaiysis has ssveral limitations. First, we relied on patients" self-reports as to whether (and
when) they had discussed their preferences for cardiopuimonary resusci::ation or prolonged mechanical
ventilation with their physician. Such an approach is
subject to recall bias and the patient's interpretation
of what constitutes such a discussion. However,
what may be most important are patients" perceptions of whether or not a conversation took place, as
well as the belief that their physician understands
their preferences. Second, we ascertained whether a
discussion about end-of-iife preferences had occurred by using a single interview question at a
single time point, whereas discussions about prognoses, resuscitation, and other end-of-life preferences often evolve over several days, weeks, or
months. Third, the order of questions about these
two interventions focused first on patients' choices
for treatment and not on their preferences for discussing various cnd-o:-life therapies. If patients had
first been asked about their preferences for discussing these options and if we had provided more
detailed explanations about these interventions and
included patient preferences over time, our results
may have been different. Fourth, our study sample
was a group of hospitalized, seriously ill patients
whose initial preferences for end-of-life care and
discussions about this care were obtained during
acute illness. These patients were a subset of the
patients enrolled in SUPPORT; they had a better
prognosis overall and a lower severity of illness than
patients who could not be interviewed, although all
were seriously ill (6-month mortality rate, 29%). We
did not collect data on preferences of patients who
were too sick to be interviewed or on preferences of
Annals of Internal Medicine • Volume 127 • Number 1
9
outpatients; therefore, our findings may not be generalizable to patients less ill than our study patients.
Finally, we did not eollect specific information from
patients about why they did or did not want to
discuss preferenees for end-of-life eare.
In summary, our findings suggest that tor seriously ill hospitalized adults, communication about
preferences for cardiopuimonary resuscitation and
mechanical ventilation is uncommon. Most patients
do not discuss these end-of-life preferences with
their physicians, although many patients are interested in such discussions. Some patient characteristics, such as being black, being younger, and reporting poor quality of life, are assoeiated with wanting
to discuss these preferences with one's physician but
not having done so. Our findings also suggest that
many patients who have not discussed their preferences do not wish to do so. Not having an advance
directive, estimating an excellent prognosis, and reporting fair to excellent quality of life are associated
vv-ith not wanting to discuss preferences. Patienls
who do not want to talk about their preferences
often do not want life-extending treatments and are
at substantial risk for undergoing these treatments.
For patients who have not discussed and do not
want to discuss their preferences, as well as patients
with an unmet need for such discussions, failure to
discuss and understand patient preferences for cardiopuimonary resuscitation and mechanical ventilation may result in the provision of unwanted interventions.
Appendix
The following are the SUPPORT investigators:
George Washington University, Washington, D.C.:
Rose Baker, MSHyg, Rosemarie Hakim, PhD, William A. Knaus, MD, Barbara Kieling, BA, Detra K.
Robinson, MA, and Douglas P. Wagner, PhD; Dartmouth Medical School, Hanover, New Hampshire:
Jennie Dulac, BSN, RN, Joanne Lynn, MD, MA,
MS, Joan Teno, MD, MS, and Beth Virnig, PhD;
John Hopkins University, Baltimore, Maryland:
Marilyn Bergner, PhD (deceased), Albert W. Wu,
MD, MPH, and Yutaka Yasui, PhD; Beth Israel
Deaconess Medical Center, Boston, Massachusetts:
Lee Goldman, MD, MPH, E. Francis Cook, ScD,
Mary Beth Hamel, MD, Lynn Peterson, MD, Russell S. Phillips. MD, Joel Tsevat, MD, Lachlan Forrow, MD, Linda Lesky, MD, and Roger Davis, ScD;
Cleveland MetroHealth Medical Center, Cleveland,
Ohio: Alfred F. Connors Jr., MD, Ncal V. Dawson,
MD, Claudia Coulton, PhD, C. Seth Landefeld,
MD, Theodore Speroff, PhD, and Stuart Youngner,
MD; Duke University Medical Center, Durham,
10
North Carolina: William J. Fulkerson Jr., MD, Robert M. Califf, MD, Anthony N. Galanos, MD, Peter
Kussin, MD, Lawrence H. Muhlbaier, PhD, Maria
Winchell. MS, Carlos Alzola, MS, and Frank E.
Harrell Jr., PhD; Marshfield Medical Research
Foundation, Marshfieid, Wisconsin: Norman A.
Desbiens, MD, Steven Broste, MS, Michael Kryda,
MD, Douglas J. Reding, MD. Humberto J. Vidaillet
Jr., MD, and Marilyn Follen, RN, MSN; University
of California, Los Angeles, California: Robert K.
Oyc, MD, Paul E. Bellamy, MD, Gill Cryer, MD,
James W. Davis, MD, Jonathan Hiatt, MD, Neil S.
Wenger, MD, MPH, Honghu Liu, PhD, and Margaret Leal-Sotelo, MSW; Medical College of Wisconsin, Milwaukee, Wisconsin: Peter M. Layde,
MD. Msc; Ohio University, Athens, Ohio: Hal
Arkes, PhD; Presbyterian-St. Luke's Medical Center, Denver, Colorado: Donald J. Murphy, MD.
From Bcili Israel Deaconess Medical Center and Haward Medical School, Boston, Massachusctis; University of California. Los
Angeles, Medical Center, l.os Angeles. California; Georgt; Washington University, Washington, D.C; Case Western Reserve University School of Medicine. Cleveland, Ohio: University of
Virginia School of Medicine, Charloitcsville. Virginia; Duke University Medical Center. Durham. North Carolina; and Marshfield
Clinic. Marshfield. Wisconsin.
Grant Support: By lhe Robert Wood Johnson Foundation. Dr.
Hofmann was supported, in part, by National Research Service
Award 5T32FE110(11.
Requests for Reprints: Russell S. Phillips, MD, Division of General Medicine and Primary Care, Beth Israel Deaconess Medical
Center, LY-33tl, 330 Brookline Avenue, Boston, MA 02215.
Current Author Addresses: Drs. Hofmann. Davis, and Phillips;
Division of General Medicine and Primary Care. Beth Israel
Deaconess Medical Center. LY-330, .330 Brookline Avenue, Boston. MA 02215.
Dr, Wenger: Department of Medicine, University of California,
Los Angeles, School of Medicine, B-564 Factor Building, 10833
Le Conte Avenue, Los Angeles, CA 90024-1736.
Drs. Teno and Lynn: Center to Improve Care of the Dying,
George Washington Medical Center, 1001 22nd Street. NW.
Suite 870, Washington, DC 20037.
Dr, Connors: Department of Health Evaluation Sciences, University of Virginia School of Medieine. Box 600, Charioltesvillc,
VA 22WS.
Dr. Desbiens: Department of General Medicine. Marshfield
Medical Research Foundation, KMli North Oak Avenue-IRF,
Marshfield, WI 54449-5790.
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AD LIBITUM
The Adoption
(in Celebration of Arielle)
Her arrival came suddenly, a long distant call.
Her lineage unclear, her existence undeniable.
Could she be ours, was thai possible?
Truly, she belongs to no other.
Creation, an artful assemblage
blind, if not indiflerent to the artist.
In the tapestry of mankind, who creates the thread?
Truly, she belongs to no other.
The house is in chaos as we prepare.
What to tell the girlchild of our own blood?
What indeed, her young eyes see love and anticipation.
Truly, she belongs to no other.
There is a birth, mother coaches mother.
A child is borne and passed from one to the other amid promises and tears.
An infant enters the family of man.
Truly, she belongs to no other.
BrticeA. Ourieff. MD
Santa Maria, CA 93454
Requests for Reprints: Bruce A. Ourieff, MD. 821 Easl Chapel,
Suile 201. Santa MiiTia. CA 93454.
©I'W7 Amisricnn College of Physicians
12
I July 1997 • Annals of Internal Medicine • Volume 127 • Number 1