Documentation of Advance Care Planning
for Community-Dwelling Elders
Victoria Y. Yung, B.A.,1Anne M. Walling, M.D.,1,4Lillian Min, M.D., MSHS,1
Neil S. Wenger, M.D., M.P.H.,1,4and David A. Ganz, M.D., Ph.D.1,2,3
Background: Advance planning for end-of-life care has gained acceptance, but actual end-of-life care is often
incongruent with patients’ previously stated goals. We assessed the flow of advance care planning information
from patients to medical records in a community sample of older adults to better understand why advance care
planning is not more successful.
Methods: Our study used structured interview and medical record data from community-dwelling older pa-
tients in two previous studies: Assessing Care of Vulnerable Elders (ACOVE)-1 (245 patients age ?65 years and
screened for high risk of death/functional decline in 1998–1999) and ACOVE-2 (566 patients age ?75 who
screened positive for falls/mobility disorders, incontinence, and/or dementia in 2002–2003). We compared
interview data on patients’ preferences, advance directives, and surrogate decision-makers with findings from
the medical record.
Results: In ACOVE-1, 38% of surveyed patients had thought about limiting the aggressiveness of medical care;
24% of surveyed patients stated that they had spoken to their doctor about this. The vast majority of patients (88%–
93%) preferred to die rather than remain permanently in a coma, on a ventilator, or tube fed. Regardless of
patients’ specific preferences, 15%–22% of patients had preference information in their medical record. Among
patients who reported that they had completed an advance directive and had given it to their health-care
provider, 15% (ACOVE-1) and 47% (ACOVE-2) had advance directive information in the medical record.
Among patients who had not completed an advance directive but had given surrogate decision-maker infor-
mation to their provider, 0% (ACOVE-1) and 16% (ACOVE-2) had documentation of a surrogate decision-maker
in the medical record.
Conclusions: Community-dwelling elders’ preferences for end-of-life care are not consistent with documentation
in their medical records. Electronic health records and standardized data collection for end-of-life care could
begin to ameliorate this problem.
older patients, who may prioritize quality of life and de-
creased burden of care over longevity. Multiple professional
societies1–3recommend advance care planning, which in-
cludes documentation of patient preferences for care, desig-
nation of a surrogate decision-maker to enact those
dvance care planning critically informs medical de-
cision-making for seriously ill patients and particularly
preferences,4and the completion of an advance directive.
These activities clarify patients’ goals and preferences and
facilitate subsequent communication between clinicians and
patients regarding the patient’s clinical condition, prognosis,
and treatment options.
Despite acceptance of advance care planning and advance
directives in the care of older patients, less than 30% of
Americans have advance directives, and those with chronic
disease have similarly low completion rates.5Even when
1David Geffen School of Medicine at UCLA, Los Angeles, California.
2Health Services Research & Development Center of Excellence and3Geriatric Research, Education and Clinical Center, Veterans Affairs
Greater Los Angeles Healthcare System.
4UCLA Healthcare Ethics Center, Los Angeles, California.
Accepted February 17, 2010.
A previous version of this work was presented as a poster at the American Geriatrics Society Annual Meeting on April 30, 2009
in Chicago, Illinois.
JOURNAL OF PALLIATIVE MEDICINE
Volume 13, Number 7, 2010
ª Mary Ann Liebert, Inc.
advance directives are completed, they often do not result in
care consistent with patients’ previously stated goals.6–9In-
terventions to improve advance care planning have been at
best modestly successful,8,10,11although multicomponent in-
terventions that affect multiple aspects of the health-care
system have demonstrated a greater effect of advance care
planning on care and patient outcomes.12,13Ineffective
transfer of patients’ advance care planning information to
medical records in the various settings where end-of-life care
decisions are made could partly explain advance care plan-
ning interventions’ limited benefit. Previous work has shown
that resuscitation orders are not carried over between hospi-
tals and nursing homes14or even between admissions at the
same hospital.15To date, no study has comprehensively
evaluated continuity of advance care planning information
from the patient through the many health-care settings that
patients visit during advanced illness.
In this analysis, we use data from the Assessing Care of
Vulnerable Elders (ACOVE) studies to determine how of-
ten advance care planning information among community-
dwelling patients may be found in the medical record.16–18
The ACOVE studies evaluate the quality of care provided
for vulnerable older patients, using both structured pa-
tient interviews and medical record reviews. Unlike other
evaluations of advance care planning among acutely ill
hospitalized patients19or patients in academic settings,
ACOVE-1 and ACOVE-2 focused on people age ?65 years
in community medical practices. Assessing the concor-
dance of patient reports with medical records in a com-
munity sample may provide insight into both the
limitations of advance care planning and approaches for
making it more successful.
We analyzed data collected as part of two quality of care
evaluations (ACOVE-1 and ACOVE-2) in which medical re-
cords and patient interviews were both collected to provide a
broad picture of medical care. The RAND institutional review
board approved ACOVE-1 and ACOVE-2.
medical care provided to 372 seniors in two managed care
organizations.16These patients were identified as being at
increased risk fordeath orfunctional decline usingthe VES-13
survey20and had medical records available. Participants’
medical records from July 1, 1998, to July 31, 1999, were col-
lected from five different sources of care: providers’ offices
(both primary care and specialty), acute care hospitals,
emergency departments, skilled nursing facilities, and out-
patient care (e.g., home health agencies and outpatient ser-
vices, such as physical therapy). Based on utilization data,
95% of all medical records were retrieved. Patients receiving
active treatment for malignant conditions (other than non-
melanoma skin cancer) were excluded from the study.16
Of the 372 participants, 341 were alive during the interview
period (August through October 2000), and 245 completed a
detailed telephone interview including questions on prefer-
ences for end-of-life care. The main reasons for not being in-
terviewed included respondent unwillingness (n¼64) and
inability to contact the patient (n¼30).
ACOVE-1 collected data on the quality of
to improve the quality of care for patients age ?75 years who
screened positive for at least one of three target conditions:
falls/gait impairment, incontinence, or cognitive impair-
ment.17,18In ACOVE-2,644patients metinclusion criteriaand
had medical records available. Of these 644 patients, 606 were
alive during the interview period at the end of study, and 566
participated in the interview (40 patients refused to partici-
pate in the interview, were too ill, or could not be contacted).
Participants received care from two large medical groups in
California. Medical record data covered outpatient clinician
(primary care and some specialty care) visits over 13 months:
August 2003 for the other.
ACOVE-2 was developed as an intervention
Interview data collection.
mation regarding patients’ end-of-life care preferences in a
computer-assisted telephone interview (Appendix), which
was pilot tested using cognitive interviewing techniques. The
computer-assisted telephone interview covered specific
wishes for end-of-life care and whether these had been dis-
cussed with the patient’s doctor. The interviewer also in-
quired whether patients had signed an advance directive
(durable power of attorney for health care or living will). If
they said ‘‘yes,’’ patients were asked whether they had given a
copy of this document to a health-care provider or hospital.
Patients were also asked if they had informed a health pro-
vider of a person who could make decisions regarding med-
ical treatment for them if they could not speak for themselves.
ACOVE-2 also surveyed patients using a computer-as-
sisted telephone interview. However, questions were limited
to advance care planning (Appendix; available online at
www.liebertpub.com). Patients were asked whether they had
an advance directive, and if they said ‘‘yes,’’ whether they had
given this document to their provider. Patients were also
asked whether they had informed their provider of a surro-
ACOVE-1 collected infor-
Medical record abstraction.
reviewed medical records from ACOVE-1 and ACOVE-2
using structured abstraction forms. Ten percent of records
were reabstracted for interrater reliability in both studies,
demonstrating greater than 90% reliability.16,18
In ACOVE-1, medical record abstraction was performed
separately for each of the five settings of care from which
medical records were collected. For each source of medical
records, the abstractor used a structured abstraction form to
collect detailed information about any documentation in the
record that addressed a) patients’ preferences for end-of-life
care and b) documentation that a surrogate had been desig-
nated. For preference and surrogate documentation, abstrac-
tors searched for information in a hierarchical manner, with a
formal advance directive document at the top of the hierarchy
and ‘‘no data found’’ at the bottom (Appendix Tables 1 and 2).
Trained nurse abstractors
their end-of-life care preferences, we used patient interview
datafromACOVE-1 only, sinceACOVE-2 didnot collectend-
of-life preference data. For advance directives and surrogate
decision-makers, we present patients’ reports from both
When examining patients’ reports of
862YUNG ET AL.
ACOVE-1 and ACOVE-2. Patient reports are taken directly
from responses to the interview questions (Appendix), except
that in ACOVE-1, patients were asked two separate questions
of attorney’’ or b) a ‘‘living will’’ to their provider. We con-
sidered patients to have given an advance directive to their
provider if either question was answered affirmatively.
Medical record data.
tive as present in the medical record if a) abstractors found an
advance directive in the chart, or b) an advance directive
could not be found, but abstractors found an advance direc-
tive mentioned somewhere in the chart. For information
about patient end-of-life care preferences or designation of a
surrogate decision-maker to be considered as present in the
medical record, we tested two definitions, one stringent and
one lenient. The stringent definition required finding either a)
an advance directive or b) a physician note specifying the
information. The more lenient definition additionally con-
ferred credit for notations of attempts to identify preferences
or a surrogate, patient refusal to specify preferences or a
surrogate, documentation that preferences or surrogates were
unknown, or any mention of an advance directive (for pref-
erences) in the chart when the actual document was not
found. Since the number of patients having preferences or
surrogates documented in the medical record did not change
meaningfully using the lenient and stringent definitions, we
present findings based on the lenient definition.
For ACOVE-1, we paired medical record data from clini-
cians’ offices with hospital data, and data from clinicians’
offices with emergency department data, to examine to what
extent advance care planning information from one site was
available at the other. If patients presented with multiple re-
corded episodes of care for a particular type of care (e.g.,
hospitalizations from two different hospitals), then the med-
ical record with the highest-quality information with regard
to advance care planning was used for analysis. The kappa
statistic was used to characterize concordance on level of
documentation across settings.
We considered an advance direc-
Linking patient reports with medical record data.
compared patients’ interview data with medical record data
to ascertain whether the medical record contained patient-
reported information. Because patient preferences are highly
individualized and often vary over time, we did not specifi-
cally match the content of patients’ preferences in the inter-
view with medical record content. Rather, we focused on
determining whether any kind of preference information was
present in the record for patients who noted specific prefer-
ences in the interview.
College Station, TX) was used for data analysis. Categorical
data are presented as frequencies, and continuous data as
means. Two-sample t-tests and z-tests were used for contin-
uous and categorical data, respectively.
Intercooled Stata 9.2 (StataCorp,
Demographics (Table 1)
Both studies had samples (ACOVE-1, N¼372; ACOVE-2,
N¼644) with a similar mean age (81 years, p¼0.10) and
percent women (about two thirds, p¼0.40); both samples
were mostly white. ACOVE-2 patients had completed high
school at higher rates than ACOVE-1 patients (88% vs. 59%),
were less vulnerable to death or functional decline (VES-13
score 4.6 vs. 5.3), and had slightly better self-reported health
(2.9 vs. 2.6 on a 5-point scale on which higher is better).
ACOVE-2 had more patients with dementia or incontinence
due to ACOVE-2 selection criteria for these conditions.
Documentation of patient preferences (Table 2)
Among the 245 interviewed patients in ACOVE-1, 92 (38%)
reported having thought about limiting the aggressiveness of
medical care they wished to receive and 59 (24%) reported
having spoken to their doctor about this. Among these 59
patients, 56 responded to interview items about which deci-
sions they had made with their physicians: 6 (11%) decided
not to be hospitalized; 15 (27%), not to have major surgery; 10
(18%), not toreceive cardiopulmonary resuscitation; 16 (29%),
not to have a feeding tube; and 17 (30%), not to be attached to
a ventilator. Five of the 56 participants did not make any care
limitation decisions after discussing the issue with their
Table 1. Patient Characteristics in ACOVE-1
Mean age (standard deviation)
High school graduate (%)
Mean vulnerability scorea
Mean self-reported health (5 point)b
Clinical conditions (%)
Chronic obstructive pulmonary disease
Chronic renal insufficiency
Coronary artery disease
Parts of this table were compiled from previous work.16,18,23
ACOVE-1 was an observational study of patients age ?65 years at
increased risk of death or functional decline (defined as vulnerability
score ?3),20whereas ACOVE-2 was a quality improvement inter-
vention that enrolled patients age ?75 years who screened positive
for falls, incontinence, and/or cognitive impairment. Definitions of
clinical conditions varied slightly between the two studies and were
based on different sources of medical records (for ACOVE-1, all
medical records; for ACOVE-2, medical records from provider
For ACOVE-1, N¼245 for ethnicity and education. For ACOVE-2,
N¼592 for ethnicity and education, and N¼642 for self-reported
aBased on the Vulnerable Elders-13 Survey, which has a range of
0–10. A higher score indicates a greater risk of functional death or
decline over the next 2 years.
bBased on the excellent to poor 5-point scale with a range of 1–5.
A higher score indicates a better self-reported health.
COMMUNITY-DWELLING ELDERS 863
physician. Among the 59 patients who reported speaking
with their physicians about limiting medical care, only 13
(22%) had any medical record documentation about patient
When ACOVE-1 participants were asked about their will-
ingness to be kept alive in future adverse health states, 34%
indicated that they would not want to be resuscitated if their
heart stopped beating. When patients were presented with
hypothetical questions about living in an adverse health state,
93% preferred to die rather than be permanently unconscious,
90% preferred to die rather than be permanently attached to a
ventilator, and 88% preferred to die rather than be perma-
nently fed through a tube. For each of the different clinical
scenarios, only 15%–17% of patients had any preference
documentation in their medical records.
Documentation of advance directive
completion (Table 2)
Of the 245 patients interviewed in ACOVE-1, 164 (67%)
reported completing an advance directive. Among these 164
patients, 109 (66%) reported giving the advance directive to
and 7 (4%) did not know. Examination of medical records
found that only 15% contained an advance directive or any
documentation about the existence of an advance directive
among the 109 patients who reported giving a copy to their
physician. Among the 80 patients who stated they did not
have an advance directive, 24 (30%) reported communicating
information about a surrogate decision-maker to their phy-
sician. We found that none of these 24 patients had informa-
tion about a surrogate decision-maker in any medical record.
Of 566 interviewed patients in ACOVE-2, 413 (73%) stated
that they had completed an advance directive, and 221 (54%)
of these 413 patients reported giving it to their health-care
provider. Of these 221 patients, 47% had evidence of an ad-
vance directive in their medical record. Among those 146
patients who stated they had not completed an advance di-
rective, 43 patients reported giving their health-care provider
in the medical record.
Advance care planning documentation
across settings of care
In ACOVE-1, any kind of advance care planning docu-
mentation was present in records of 71 out of 372 patients
(19%). This included 39 (11%) of 368 patients’ records from
provider offices, 37 (52%) of 71 patients’ hospital records, 1
(1%) of 72 patients’ emergency department records, 9 (81%) of
Table 2. Patient Report/Medical Record Comparison for Preference Documentation, Advance Directive,
and Surrogate Decision-Maker
present in chart, %
in chart, %N (%)N(%)
Has thought about limiting aggressiveness of medical care
Spoke to doctor about limiting aggressiveness of medical care
Prefers not to receive resuscitation
Prefers to die rather than remain permanently in coma
Prefers to die rather than remain permanently ventilated
Prefers to die rather than remain permanently tube fed
Written advance directives (AD)a
Patient completed AD and gave to health-care provider
Patient completed AD and did not give to health-care provider
Patient completed AD and does not know/data missing
Patient stated that AD never completed
in chart, %
in chart, %
Surrogate decision-maker information if no AD
completed per interviewN (%)N (%)
Patient stated gave surrogate information to
Patient stated did NOT give surrogate information
to health-care provider
Patient does not know if gave surrogate information
to health-care provider
24 (30)043 (29) 16
54 (68)0101 (69)5
2 (3)02 (1)0
For both ACOVE-1 and ACOVE-2, the left column represents the number and percentage of patients as a proportion of the denominator
listed in the header. The right column represents the percentage of patients in the left column for whom any kind of preference, advance
directive, or surrogate information was present in the medical record. NA¼not applicable.
aOne additional patient (ACOVE-1) and seven additional patients (ACOVE-2) not represented in the column did not know whether they
had completed an AD.
864YUNG ET AL.
11 patients’ skilled nursing facility records, and 2 (2%) of 89
patients’ ancillary outpatient care records. Thirty (42%) of
these 71 patients with some kind of advance care planning
documentation also had some kind of surrogate information.
An additional two patients without advance care planning
documentation had some kindofsurrogate information in the
chart in at least one health-care setting.
Table 3 compares continuity of advance care planning
documentation between the provider office and the hospital:
41 (58%) of 71 patients with any medical record evidence of
advance care planning in any setting had both hospital and
provider office records. Of the 12 hospital records that con-
tained an advance directive or note about patient preferences,
we found only four cases with corresponding documentation
in the provider office record. Among the 18 hospital charts
in which a note indicated a search of advance directive or
preference information, only five provider office records
contained any advance care planning documentation. Con-
cerning continuity between provider office and emergency
department settings (Table 3), in 12 of 19 cases in which both
records were present, there was advance care planning doc-
umentation in the provider office chart, but in only 1 of these
12 was any documentation found in the emergency depart-
ment record. For both the provider office/hospital and
provider office/emergency department comparisons, con-
cordance on the level of advance care planning documenta-
tion across settings was no greater than chance.
Despite substantial deficits in end-of-life care in the U.S.
health system, the role of advance care planning in improving
end-of-life care has been difficult to discern.8This study
demonstrates that translation of patient end-of-life care pref-
erences into documentation of advance care planning is poor.
Previous work suggests that clinicians do not systematically
document what transpires during the clinical encounter,
particularly for psychosocial information,21so our results
likely reflect a mix of not discussing advance care planning in
the clinical encounter and failure to document those discus-
sions that are occurring. Lack of documentation of advance
care planning could interfere with end-of-life care because
clinicians may later use the medical record to identify pa-
tients’ previously stated wishes. However, given this study’s
finding that advance care planning information is not reliably
available across health-care settings, improving advance care
planning documentation would likely help end-of-life care
only in tandem with a means to access this information across
different health-care venues.
In ACOVE-1 and ACOVE-2, 67% and 73% of patients re-
ported having an advance directive, compared to 30% (at
most) in the general American population.5This difference
may result from an older patient population (mean age 81) in
the ACOVE studies; also, most patients were at increased risk
In addition, in ACOVE-2, patients were well-educated; higher
socioeconomic status has been found to be related to increased
rates of advance directive completion in previous work.5
Among patients interviewed in ACOVE-1, 24% reported
having discussed limiting the aggressiveness of care with a
health-care provider. These patients claimed to have covered
important topics with the physician: whether or not to stay in
thehospital;be attachedtoaventilator;orhavemajor surgery,
cardiopulmonary resuscitation, or a feeding tube, with a va-
riety of different preferences expressed. The uniqueness of
patients’ preferences, coupled with the frequent desire to
avoid certain medical interventions, reinforce the need to as-
Ourstudymaybethe firsttoexplore indetail howpatients’
personal accounts of advance care planning correlate with
actual medical record documentation. We explicitly asked
patients whether they had discussed end-of-life preferences
or informed their provider of a surrogate decision-maker; we
Table 3. Continuity of Advance Care Planning Between Provider Offices and Hospital, and Between
Provider Offices and Emergency Department
AD or note
Note seeking AD
or preferences‘‘Full code’’
No AD or
Provider offices Hospital
AD or note containing preferences
Note seeking AD or preferences
No AD or preference data
AD or note containing preferences
Note seeking AD or preferences
No AD or preference data
Numbers in the table represent the number of patients with records containing information in the specified row and column header. Using
the kappa statistic, concordance between settings on the level of advance care planning documentation was no greater than chance (for the
provider office/hospital comparison, kappa¼0.05, p¼0.22; for the provider office/emergency department comparison, kappa¼0.09, p¼0.07).
Abbreviations: AD, advance directive.
also performed a comprehensive medical record collection
and structured review. One published report reviewing
medical records of decedents in a midwestern community
examined whether patients had advance directives in place
prior to death.13That study demonstrated an 81% presence of
written advance directives in the medical record, but these
results are not directly comparable to ours, since only dece-
advance directive education program was in place. By con-
trast, we provide data from community-dwelling elders at
increased risk for death and functional decline whose health
status would be more compromised than a general older
population, but likely better off than a sample of decedents.
This study is limited by several competing explanations for
the discrepancies we found between what patients reported
and what was documented in their medical record. First,
patients may have misreported whether they had discussed
with, or given documentation to their provider about end-
of-life care preferences or a surrogate decision-maker. Over-
reporting might reflect a socially desirable response bias,22
while under-reporting might reflect problems with recall.
Second, medical records data were abstracted from patient
charts, so documents with advance care planning information
given by patients to clinicians may have been lost or not filed
appropriately. This reflects usual care, however, and points to
the need for better systems for capturing patient information.
Third, providers might have remembered, but failed to doc-
ument the advance care planning topics that were verbally
discussed during the office visit. While this possibility means
we may have underrepresented providers’ knowledge of
patients’ preferences, documentation is nonetheless critical in
a health-care system that relies on teams of providers in dif-
ferent settings. Last, this analysis is dependent on patient re-
port, and the complexity of end-of-life care may not lend itself
well to a structured telephone interview. Nonetheless, we
obtained a variety of responses from patients using the tele-
phone interview format, suggesting, at a minimum, signifi-
cantvariationinpreferences thatwouldaffectend-of-life care.
The ACOVE-2 cohort showed higher rates of correlation
between patient report and medical records and are more
recent than ACOVE 1 (2002–2003 vs. 1998–1999). This may be
because the two samples are different, particularly in regards
to education, geographic location, and rates of dementia and
urinary incontinence. Alternatively, this difference may rep-
resent an improvement over time regarding communication
older patients. An updated evaluation of continuity of ad-
vance care planning from patient to care settings, including
patients cared for by providers using electronic health record
systems, would help in determining whether the problems
with advance care planning documented here persist.
dwelling elders are often not available in medical record
documentation. In addition, patients do not consistently dis-
cuss end-of-life issues with their providers, even if they have
thought about such issues. Future research should address
whether electronic health records and/or a structured ap-
proach to documenting patients’ preferences, such as the
Physician Orders for Life-Sustaining Treatment (POLST),
for end-of-life careamong community-
could reduce these problems in a supportive organizational
The authors thank Carol Roth for guidance regarding the
ACOVE medical record reviews, Caren Kamberg and Patty
Smith for administrative assistance, and anonymous peer
reviewers for their thoughtful feedback on the manuscript.
Ms. Yung was supported by the NIA/AFAR & Lillian R.
Gleitsman Medical Student Training in Aging Research Pro-
gram. Dr. Walling was supported by National Research Ser-
vice Award Training Grant T32 PE19001 and the UCLA
Specialty Training & Advanced Research Program. Dr. Min
was supported by grants from the Agency for Healthcare
Research and Quality (R21 HS017621-01) and National In-
stitute on Aging-UCLA (K12 AG001004). Dr. Ganz was sup-
ported by the U.S. Department of Veterans Affairs, Veterans
Health Administration, VA Health Services Research & De-
velopment (HSR&D) Service through the VA Greater Los
Angeles HSR&D Center ofExcellence (Project no. VA CD2 08-
012-1). Data analyzed in this manuscript were collected as
part ofthe Assessing Care ofVulnerable Elders and Assessing
Care of Vulnerable Elders-2 projects, which were supported
by Pfizer Inc. The funders mentioned played no role in the
design and conduct of the study; collection, management,
analysis, and interpretation of the data; or preparation, re-
view, or approval of the manuscript. The views expressed in
this article are those of the authors and do not necessarily
reflect the position or policy of the National Institutes of
Health, the Agency for Healthcare Research and Quality, or
the U.S. Department of Veterans Affairs.
Author Disclosure Statement
All of the authors declare that they have no financial con-
flicts of interest with respect to the content of this manuscript.
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Address correspondence to:
David Ganz, M.D., Ph.D.
VA Greater Los Angeles Healthcare System (11G)
11301 Wilshire Boulevard, Building 220, Room 313
Los Angeles, CA 90073
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