Vol. 53 No.

4 April 2017 Journal of Pain and Symptom Management 745

Brief Report

Discordance of Patient-Reported and Clinician-Ordered

Resuscitation Status in Patients Hospitalized With Acute
Decompensated Heart Failure
_
Kathleen A. Young, MD, Sara E. Wordingham, MD, Jacob J. Strand, MD, Veronique L. Roger, MD, MPH, and
Shannon M. Dunlay, MD, MS
Department of Medicine (K.A.Y., J.J.S.), Mayo Clinic, Rochester, Minnesota; Department of Medicine (S.E.W.), Mayo Clinic, Scottsdale,
Arizona; Department of Cardiovascular Diseases (V.L.R., S.M.D.), Mayo Clinic, Rochester, Minnesota; and Department of Health Sciences
Research (V.L.R., S.M.D.), Mayo Clinic, Rochester, Minnesota, USA

Abstract
Context. Accurate documentation of preferences for cardiopulmonary resuscitation at hospital admission is critical to
ensure that patients receive resuscitation or not in accordance with their wishes.
Objectives. We sought to identify and characterize inconsistencies in patient-reported and clinician-ordered resuscitation
status in patients hospitalized with acute decompensated heart failure (ADHF).
Methods. Southeastern Minnesota residents hospitalized with ADHF were prospectively enrolled into a study that included
the administration of face-to-face questionnaires from January 2014 to February 2016. Patient-reported resuscitation status was
assessed at enrollment using a validated question. Clinician-ordered resuscitation preferences at hospital admission were
abstracted from the electronic medical record.
Results. Of the 400 patients administered the questionnaire; 213 (53.3%) stated their resuscitation preference as Full
Code, 166 (41.5%) do-not-resuscitate (DNR), and 21 (5.3%) were unsure. In comparison, clinician-ordered resuscitation
status was Full Code in 263 (65.8%) patients, DNR in 133 (33.3%), and not documented in four (1.0%). Patient-reported and
clinician-ordered resuscitation status was discordant in 20% of patients, of whom 5.6% elected Full Code by questionnaire and
had a DNR clinician order, and 14.4% elected DNR by questionnaire but had a Full Code clinician order. Differences in age,
comorbidities, health literacy, marital status, completion of advance directives, hospital length of stay, and discharge
destination in patients with discordant vs. concordant resuscitation preferences were observed.
Conclusions. Patient-reported and clinician-ordered resuscitation preferences were discordant in 20% of patients
hospitalized with ADHF. The underlying etiology of these inconsistencies may reflect factors such as patient indecisiveness or
patient-clinician miscommunication and requires further exploration. J Pain Symptom Manage 2017;53:745e750. Ó 2016
American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Key Words
Heart failure, resuscitation, hospitalization, advance care planning

Introduction time of hospital admission for acute decompensated

heart failure (ADHF) has not been recently examined.
Accurate documentation of preferences for cardio-
In the Study to Understand Prognoses and Prefer-
pulmonary resuscitation in the hospital is critical to
ences for Outcome and Risks of Treatments that
ensure that patients receive resuscitative efforts in
enrolled patients hospitalized with serious illness in
accordance with their wishes. The accuracy of
the early 1990s, when physicians were asked if they
clinician-ordered resuscitation preferences at the
thought patients with heart failure (HF) would want

Address correspondence to: Shannon M. Dunlay, MD, MS, Mayo Accepted for publication: November 14, 2016.
Clinic, 200 First Street SW, Rochester, MN 55905, USA.
E-mail: dunlay.shannon@mayo.edu

Ó 2016 American Academy of Hospice and Palliative Medicine. 0885-3924/$ - see front matter
Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpainsymman.2016.11.010
746 Young et al.
to be resuscitated, they were wrong 24% of the time.1
Since that time, there has been increased recognition
of the importance of communication between clini-
cians and patients with HF about their wishes for
end-of-life (EOL) care, including preferences for
resuscitation. National HF guidelines now recom-
mend that clinicians discuss preferences for EOL
care and resuscitation with all patients with HF.2,3
However, whether this enhanced recognition of the
importance of these discussions has translated to
improved clinician accuracy in documenting patient
resuscitation preferences remains to be determined.
In this study, we sought to compare patient-reported
and clinician-ordered resuscitation preferences in
contemporary patients hospitalized with ADHF. In
addition to delineating their frequency, we also aimed
to characterize the nature and patient predictors of in-
consistencies when they occurred.
Methods
Study Design
Patients hospitalized with ADHF at Mayo Clinic Hos-
pitals in Rochester, MN, were approached for prospec-
tive cohort study participation between January 2014
and January 2016. The study included administration
of a face-to-face questionnaire by a research assistant.
All participants provided written authorization, and
the study was approved by the Mayo Clinic Institu-
tional Review Board.
Patient Population
Patients with HF were identified using natural lan-
guage processing of the electronic medical record
(EMR) text.4 After a hospital encounter, documenta-
tion is transcribed and appears in the record within
24 hours, making prompt identification of patients hos-
pitalized with HF possible. The search was restricted to
patients at least 20 years old who were residents of a
seven-county area in Southeastern Minnesota, where
the vast majority of residents have been shown to receive
health care at the Mayo Clinic. This approach was taken
to enroll study participants from the local community,
rather than patients referred for specialty care from
other parts of the state and country. Medical records
were reviewed by experienced research nurses to deter-
mine whether patients were hospitalized with ADHF,
met Framingham criteria for HF, and had a previous
diagnosis of HF. Patients with a new diagnosis of HF
were excluded to ensure that they had the opportunity
to thoroughly discuss their diagnosis with their clini-
cians before being approached for an HF study.
Resuscitation Preferences
Patient-reported resuscitation status was assessed at
enrollment using the question ‘‘As you probably
Vol. 53 No. 4 April 2017
know, there are a number of things that 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 your doctors to do if your heart ever
stops beating? Would you want your doctors to try to
revive you, or would you want your doctors not to try
to revive you?.’’5 Choices were ‘‘Yes, try to revive me’’
(Full Code), ‘‘No, do not try to revive me’’ (do-not-
resuscitate [DNR]), and unsure/no answer.
Clinician-ordered resuscitation data were collected at
the time of admission as resuscitation status is a stan-
dard part of all hospital admission order sets. Changes
in orders for resuscitation during the hospitalization
were also collected. Clinician-ordered resuscitation
status was defined as either ‘‘Full Code’’ or ‘‘DNR’’
based on orders in the EMR. As defined at our institu-
tion, DNR status refers to withholding cardiopulmo-
nary resuscitation in the setting of unconsciousness
and pulselessness.
Additional Data
Patient activation level was assessed using the vali-
dated 13-item Patient Activation Measure6 with lower
levels reflecting worse activation. Patients who are acti-
vated believe patients have important roles in main-
taining their health and know how to manage their
condition, prevent health decline, and collaborate
with their clinicians. This instrument was included as
to explore if there was an association of activation
with resuscitation preferences. Health literacy was as-
sessed using the Health Literacy Screener7 and health
status using the question, ‘‘In general, would you say
that your health is excellent, very good, good, fair or
poor?.’’8 Completion of an advance directive was as-
sessed using the question, ‘‘Do you currently have a
signed medical power of attorney or living will?’’
Marital status and education level were assessed by
questionnaire. Demographics and comorbidities
were collected from the EMR. The Charlson comor-
bidity index was used to assess comorbidity.9 Left ven-
tricular ejection fraction (EF) at rest was collected
from transthoracic echocardiograms performed
within six months before to one month after study
enrollment. Preserved EF was defined as 50% or
more. Vital status (alive or deceased) at 30 days was
available on all patients. The date of death was deter-
mined using death certificates filed in local counties,
obituary notices, and electronic files of death certifi-
cates obtained from the State of Minnesota Depart-
ment of Vital and Health Statistics.
Statistical Analysis
Data collection was very complete; all variables had
less than 1% missing. The level of agreement between
patient-reported and clinician-ordered resuscitation
Vol. 53 No. 4 April 2017 Resuscitation Preferences in Heart Failure
preferences were assessed using percent agreement
and the Cohen’s kappa coefficient. Baseline character-
istics are presented as number (%) for categorical var-
iables, mean (SD) for normally distributed
continuous variables, and median (interquartile
range) for non-normally distributed variables. Differ-
ences in baseline characteristics for those with discor-
dant and concordant resuscitation preferences were
examined using the chi-square test, t tests, and Wil-
coxon rank-sum tests where appropriate. All analyses
were performed using Stata, version 13 (College Sta-
tion, TX). A P < 0.05 was used as the level of
significance.
Results
A total of 498 patients were approached for inclu-
sion in the study and 400 (80.3%) agreed to partici-
pate (Fig. 1). The distribution of age (mean age 75.8
vs. 77.7 years, respectively, P ¼ 0.22) and sex (49%
vs. 46% women, P ¼ 0.56) were similar in nonpartici-
pants and participants. The median (25th to 75th
percentile) time from hospital admission to study
enrollment and completion of questionnaires was
two (1e3) days. Of those surveyed, 213 (53.3%) stated
their resuscitation preference as Full Code, 166
(41.5%) preferred no resuscitation (DNR), and 21
(5.3%) were unsure. In comparison, clinician-
ordered resuscitation status at time of admission was
Full Code in 263 (65.8%) patients, DNR in 133
(33.3%), and not documented in four (1.0%,
Table 1). The median (25th to 75th percentile) hospi-
tal length of stay was four (3e7) days. Before hospital
discharge, changes in clinician-ordered resuscitation
status occurred in 19 (4.8%) patients, including 13
changes from Full Code to DNR and six changes
from DNR to Full Code.
Fig. 1. Patient enrollment.
747
Table 1
Patient-Reported and Clinician-Ordered Resuscitation
Preferences
Patient-Reported Clinician-Ordered Resuscitation Preference
Resuscitation
Preference Full Code DNR Not Documented
Full code 190a 21b 2c
DNR 54b 110a 2c
Unsure 19c 2c 0c
a
Concordant patient-reported and clinician-ordered resuscitation status.
b
c
Discordant patient-reported and clinician-ordered resuscitation status.
Not able to determine concordance/discordance due to patient uncertainty
or undocumented resuscitation status.
In patients with documented preferences both by
questionnaire and clinician order (n ¼ 375), resuscita-
tion preferences were concordant in 80% of patients.
The Cohen’s kappa coefficient was 0.67, indicating
good agreement. Of the 75 patients (20%) with discor-
dant resuscitation preferences, 5.6% elected Full Code
by questionnaire and had a clinician order for DNR
status and 14.4% elected DNR by questionnaire but
had a Full Code clinician order.
Compared with those who were Full Code by both
questionnaire and clinician order (n ¼ 190), patients
with discordant resuscitation status (n ¼ 75) were old-
er (P ¼ 0.010), less often had peripheral vascular dis-
ease (PVD) (P ¼ 0.004), had a trend toward longer
hospital length of stay (P ¼ 0.068), and less often dis-
charged to home (P ¼ 0.006, Table 2). Compared with
those who were DNR by questionnaire and clinician
order (n ¼ 110), patients with discordant resuscitation
status were younger (P < 0.001), more often married
(P ¼ 0.001), had better health literacy (P ¼ 0.012),
lower EF (P ¼ 0.022), less PVD (P ¼ 0.011), longer
length of stay (P ¼ 0.033), and less often had an
advance directive (P ¼ 0.012). Overall, patients with
discordant resuscitation preferences (n ¼ 75) had a

Full Code by Patient
Report and Clinician
Order (n ¼ 190)
748
Table 2
Patient Characteristics Stratified by Resuscitation Preferences
DNR by Patient Report P-value
and Clinician Order Discordant Resuscitation P-value P-value Concordant (n ¼ 300) vs.
(n ¼ 110) Status (n ¼ 75) Full Code vs. Discordant DNR vs. Discordant Discordant

Age, years, mean (SD) 73.4 (12.6) 85.0 (9.4) 77.8 (10.8) 0.010 <0.001 0.97
Male, n (%) 112 (58.9) 50 (45.5) 43 (57.3) 0.81 0.11 0.60
EF, mean (SD), % 45 (17) 48 (16) 42.6 (17.7) 0.28 0.022 0.089
Preserved EF $ 50%, 82 (43.6) 60 (55.6) 33 (45.2) 0.82 0.17 0.67
n (%)
Duration of 132 (69.8) 73 (67.0) 54 (72.0) 0.73 0.47 0.59
HF > 18 months, n (%)
NYHA class on admissiona 4 (3, 4) 4 (3, 4) 4 (3, 4) 0.28 0.70 0.55
Advance directive, n (%) 114 (62.0) 94 (87.9) 51 (68.9) 0.29 0.002 0.67
Lived at home before 171 (90.5) 78 (70.9) 62 (82.7) 0.076 0.067 0.90
hospitalization, n (%)
Comorbidities
Hypertension, n (%) 141 (82.9) 86 (88.7) 55 (82.1) 0.88 0.23 0.55
Diabetes mellitus, n (%) 90 (49.5) 42 (38.9) 32 (43.2) 0.37 0.56 0.73
Prior myocardial 58 (31.9) 30 (27.8) 15 (20.3) 0.062 0.25 0.086
infarction, n (%)

Young et al.
Cerebrovascular 37 (20.3) 23 (21.3) 16 (21.6) 0.82 0.96 0.86
disease, n (%)
Peripheral vascular 40 (22.0) 22 (20.4) 5 (6.8) 0.004 0.011 0.004
disease, n (%)
Dementia, n (%) 2 (1.1) 4 (3.7) 2 (2.7) 0.35 0.71 0.74
Creatinine, mean (SD) 1.6 (1.0) 1.5 (0.9) 1.7 (1.2) 0.50 0.22 0.31
Charlson comorbidity 3 (2, 6) 3 (1, 5) 2 (2, 5) 0.017 0.43 0.062
indexa
Psychosocial
characteristics
Married, n (%) 115 (60.5) 41 (37.3) 46 (61.3) 0.90 0.001 0.15
Post-high school 101 (53.2) 62 (36.3) 38 (50.7) 0.90 0.42 0.81
education, n (%)
Poor health literacy, 46 (24.3) 43 (39.1) 17 (22.7) 0.77 0.019 0.22
n (%)
Patient activation levela 3 (2, 3) 2 (2, 3) 2 (2, 3) 0.082 0.52 0.34
Health status fair or 140 (73.7) 80 (72.7) 51 (68.0) 0.35 0.49 0.36
poor, n (%)
Hospital and early post-

Vol. 53 No. 4 April 2017

discharge outcomes
Discharged to home, 149 (80.5) 67 (63.8) 47 (64.4) 0.006 0.94 0.084
n (%)
Hospital length of staya 4 (3, 7) 4 (3, 7) 5 (3, 9) 0.068 0.033 0.037
30-Day mortality, n (%) 10 (5.3) 11 (10.2) 6 (8.1) 0.38 0.46 0.75
EF ¼ ejection fraction; HF ¼ heart failure; NYHA¼ New York Heart Association.
a
Numbers shown are median (25th, 75th percentile).
Vol. 53 No. 4 April 2017 Resuscitation Preferences in Heart Failure
longer length of stay (P ¼ 0.037) and less PVD
(P ¼ 0.004) compared with those with concordant
resuscitation preferences (n ¼ 300).
Discussion
In this study of community patients hospitalized
with ADHF, patient-reported and clinician-ordered
resuscitation preferences were discordant in 20% of
patients. A higher number of patients reported a pref-
erence for no resuscitation than what was ordered by
clinicians. Patients with discordant resuscitation pref-
erences were systematically different than patients
with concordant Full Code and DNR resuscitation
preferences, with variances in age, EF, comorbidities,
completion of advance directives, psychosocial charac-
teristics, hospital length of stay, and hospital
disposition.
Despite increased awareness of the importance of
discussion of EOL preferences in patients with HF,
the frequency of discordance in patient-reported and
clinician-ordered resuscitation status we observed
is similar to older studies.1,10 There are multiple
potential reasons why patient-reported and clinician-
ordered resuscitation preferences may be inconsis-
tent. First, patients admitted to the hospital are acutely
ill, which may require clinicians to infer a patient’s
resuscitation status to be Full Code until stabilized
and further discussion can take place. Our study
design did not allow us to ascertain if resuscitation
preferences were discussed with the patient or the
family on admission, and this would be of interest in
future studies. Furthermore, discussion of resuscita-
tion preferences on admission to the hospital is
amongst a host of issues addressed in a short amount
of time. This may be the first time that some patients
have engaged in dialogue about their resuscitation
preference as EOL discussions have been shown to
occur infrequently in HF.11 As such, their initial pref-
erence may change after further self-reflection and
discussion with loved ones. In this study, there were
very few patients (n ¼ 19) whose ordered resuscitation
preference changed during hospitalization. However,
the medical context and prognosis can change quickly
in patients hospitalized with ADHF, and patients may
have changed their preference in response to our
question but not communicated that change in prefer-
ence with their medical team. Finally, patients may
have chosen a different resuscitation preference as a
result of variation in the way the question was worded
compared with the way the choice was presented by
clinicians. The way in which resuscitation preferences
are discussed can vary12 and may affect the patient’s
decision. These conversations can be awkward and
intimidating to clinicians, who often lack the skills to
conduct effective discussions. In particular, resident
749
physicians, nurse practitioners, and physician assis-
tants are often responsible for entering orders for
resuscitation preferences on hospital admission and
may lack competence in facilitating these discus-
sions.11,13 Although a single standardized question
cannot replace a nuanced patient-clinician discussion
about resuscitation preferences, the fact that 20% of
patients hospitalized with ADHF responded with a
resuscitation preference that differed from what had
been ordered by clinicians in the same hospitalization
highlights the need for greater consistency in the
approach to resuscitation preference discussions.
Those with discordant resuscitation status were
different from those that were Full Code or DNR by
both patient report and clinician order. In some
ways, patients with discordant preferences had an in-
termediate phenotype compared with those with
concordant Full Code or DNR preferencesdfor
example, they were younger than those who were
DNR but older than those who elected to be Full
Code. Other differences suggested that patients with
discordant preferences may experience more complex
hospitalizations, as they had longer length of stay than
either concordant group.
This study has limitations that should be acknowl-
edged to aid in the interpretation of the data. First,
the study was completed in a predominantly Cauca-
sian population, which may limit the generalizability
to populations of varying racial and ethnic diversity.
However, the characteristics of the study population
are similar to the state of Minnesota and the Upper
Midwest United States.14 Although we restricted our
study to residents of our local community, where
most individuals are known to receive some medical
care at our institution, some residents may seek care
elsewhere which could lead to selection bias. Patient-
reported resuscitation preference was assessed using
a single question. Although shown to have excellent
test-retest reliability,5 the possibility of patient misin-
terpretation cannot be excluded and could contribute
to the results observed. We did not perform multivari-
able models to explore factors that are independently
associated with discordant preferences because of the
relatively small number of observations, which would
be of interest in future studies. We made no mathe-
matical correction for multiple comparisons made in
this study.15,16 We found that 13 patient-level factors
were associated with discordant resuscitation prefer-
ences. In comparison, if all the null hypotheses were
true, we would expect 5% (n ¼ 3) of the comparisons
to have P-values less than 0.05.
Conclusion
Patient-reported and clinician-ordered resuscitation
preferences were discordant in 20% of patients
750 Young et al.
hospitalized with ADHF. Most inconsistencies
occurred in patients who stated a desire to be DNR
but had a Full Code clinician order in the EMR. The
underlying etiology of these inconsistencies may
reflect factors, such as patient indecisiveness or
patient-clinician miscommunication, and requires
further exploration.
Disclosures and Acknowledgements
This work was funded by the National Institutes of
Health (K23 HL 116643, PI, Dunlay). The authors
declare no conflicts of interest.
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