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Advance Care Planning Documentation Practices and Accessibility in the Electronic Health Record: Implications for Patient Safety

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Context: Documenting patients' advance care planning wishes is essential to providing value-aligned care, as is having this documentation readily accessible. Little is known about advance care planning documentation practices in the electronic health record. Objectives: Describe advance care planning documentation practices and the accessibility of documented discussions in the electronic health record. Methods: Participants were primary care patients at the San Francisco VA Medical Center, were ≥60 years old, and had ≥2 chronic/serious health conditions. In this cross-sectional study, we assessed the prevalence of advance care planning documentation, including any legal forms/orders and discussions in the prior five years. We also determined accessibility of discussions (i.e., accessible centralized posting vs. inaccessible free-text in progress notes). Results: The mean age of 414 participants was 71 years (SD ±8), 9% were women, 43% were non-white, and 51% had documented advance care planning including 149 (36%) with forms/orders and 138 (33%) with discussions. Seventy-four participants (50%) with forms/orders lacked accompanying explanatory documentation. Most (55%) discussions were not easily accessible, including 70% of those documenting changes in treatment preferences from prior forms/orders. Conclusion: Half of chronically ill, older participants had documented advance care planning, including one third with documented discussions. However, half of the patients with completed legal forms/orders had no accompanying documented explanatory discussions, and the majority of documented discussions were not easily accessible, even when wishes had changed. Ensuring that patients' preferences are documented and easily accessible is an important patient safety and quality improvement target to ensure patients' wishes are honored.
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Advance Care Planning Documentation Practices and
Accessibility in the Electronic Health Record: Implications for
Patient Safety
Evan Walker, MD1, Ryan McMahan, BS, BA2, Deborah Barnes, PhD3,4,5, Mary Katen, BA6,
Daniela Lamas, MD7,8, and Rebecca Sudore, MD3,6
1Department of Medicine, UCSF, San Francisco, CA
2UCSF School of Medicine, San Francisco, CA
3San Francisco Veterans Affairs Medical Center, San Francisco, CA
4Department of Psychiatry, UCSF, San Francisco, CA
5Department of Epidemiology & Biostatistics, UCSF, San Francisco, CA
6Division of Geriatrics, Department of Medicine, UCSF, San Francisco, CA
7Division of Pulmonary and Critical Care Medicine, Department of Medicine, Brigham and
Women’s Hospital, Boston, MA
8Ariadne Labs at Brigham and Women’s Hospital and Harvard T.H. Chen School of Public Health,
Boston, MA
Abstract
Importance—Documenting patients’ advance care planning wishes is essential to providing
value-aligned care, as is having this documentation readily accessible. Little is known about
advance care planning documentation practices in the electronic health record.
Objective—Describe advance care planning documentation practices and the accessibility of
documented discussions in the electronic health record.
Design—Cross-sectional study between 2013-2015.
Corresponding Author: Evan J Walker, MD, University of California, San Francisco Department of Internal Medicine, 505 Parnassus
Ave., Room 987, San Francisco, CA 94143-0119, Evan.Walker@ucsf.edu, Phone: 415-476-1528.
Author Contributions:
Study concept and design: Sudore, Barnes
Acquisition, analysis, or interpretation of data: All authors
Drafting of the manuscript: All authors
Critical revision of the manuscript for important intellectual content: All authors
Statistical analysis: Walker, Sudore
Obtained funding: Sudore
Administrative, technical, or material support: Sudore, Katen, McMahan
Study supervision: Sudore
Conflict of Interest Disclosures: None reported.
Neither this manuscript nor one with substantially similar content under our authorship has been published or is being considered for
publication elsewhere.
Additional Contributions: None
HHS Public Access
Author manuscript
J Pain Symptom Manage
. Author manuscript; available in PMC 2018 February 02.
Published in final edited form as:
J Pain Symptom Manage
. 2018 February ; 55(2): 256–264. doi:10.1016/j.jpainsymman.2017.09.018.
Author Manuscript Author Manuscript Author Manuscript Author Manuscript
Setting—Primary care clinics at the San Francisco Veterans Affairs Medical Center.
Participants—Veterans ≥60 years of age with ≥2 chronic/serious health conditions, ≥2 primary
care visits, and ≥2 additional clinic/hospital/emergency room visits in the prior year who were
participating in an advance care planning trial.
Exposure—Documentation of advance care planning in the electronic health record.
Main Measures—Advance care planning documentation, including all prior legal forms/orders
and documented discussions within the prior five years. For discussions, the author’s discipline
and documentation location in the electronic health record were determined. Discussions were
defined as “accessible” if documented in a designated electronic posting location or “not easily
accessible” if recorded as free-text in progress notes. Percentages and means were used to describe
these measures.
Key Results—The mean age of 414 participants was 71 years (SD ±8), 9% were women, 43%
were non-white, and 51% had documented advance care planning including 149 (36%) with
forms/orders and 138 (33%) with discussions. Seventy-four participants (50%) with forms/orders
did not have accompanying documented discussions. Most (55%) discussions were not easily
accessible. Twenty-seven participants had a subsequent discussion documenting changes in
treatment preferences from a prior form/order; however, 70% of these discussions were not easily
accessible.
Conclusions and Relevance—Half of chronically ill, older participants had documented
advance care planning wishes, including one third with documented discussions. However, half of
the patients with completed legal forms/orders had no accompanying explanatory discussions. The
majority of documented discussions were not easily accessible in the electronic health record,
including 70% of those documenting a change in treatment preferences. Ensuring that patients’
preferences are documented and easily accessible is an important patient safety and quality
improvement target to ensure patients’ wishes are honored.
Introduction
Advance care planning (ACP) is a process that supports adults in understanding and sharing
their personal values, life goals, and preferences regarding future care.1 Although the
prevalence of ACP documentation is increasing2 and may continue to increase with both
federal and local reimbursement programs for ACP,3 the rates of ACP documentation are
still low,4 especially among older and disenfranchised populations. A lack of documented
ACP can lead to medical interventions misaligned with patients’ wishes5 as well as worse
quality of life and stress for patients and surrogate decision-makers.6–11 Furthermore, ACP
is a dynamic process which should be revisited as patients’ wishes and clinical context
changes. Having up-to-date ACP information at the point of care is essential to providing
value aligned care, however, little is known about ACP documentation practices.
The Veterans Affairs (VA) healthcare system, which treats over 10 million Veterans over the
age of 65 years,12 is a leader in ACP quality improvement.13 Prior studies at the VA have
sought to improve patient education and preparation for informed decision-making as well
as increase rates of advance directive completion.14–17 The VA has also created ACP note
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templates and a centralized posting section for ACP discussion documentation in the
electronic health record (EHR) to better capture patient preferences.
While prior studies, and a recent Institute of Medicine report, have stressed the need for
standardized and up-to-date documentation of ACP in the medical record,18–23 it is unknown
how well clinicians are utilizing EHR documentation tools, which disciplines are
documenting patients’ preferences, and whether this information is easily accessible in the
medical record. Better understanding of ACP documentation practices will lead to quality
improvement opportunities to ensure patient safety and patients’ wishes are honored. This
study aimed to quantify the rates and timing of ACP documentation, which disciplines were
documenting ACP discussions, and whether ACP discussion information was placed in an
easily accessible EHR location that could be retrieved at the point of care. Based on our
clinical experience and prior research,18 we hypothesized that the majority of documented
discussions would not be easily accessible in the EHR.
Methods
This is a cross-sectional study of primary care patients at the San Francisco Veterans Affairs
Medical Center (SFVAMC). Baseline data were obtained from records of patients enrolled
in a randomized controlled trial from 2013-2015 comparing the efficacy of a patient-
centered ACP website (www.prepareforyourcare.org) plus an easy-to-read advance directive
versus an advance directive alone on ACP documentation. The methods and results of this
trial have been published.24,25
Patient Population
Eligibility was defined by chart review, physician assessment, and study staff assessment.
Patients at the SFVAMC were eligible if they were at least 60 years of age, fluent in English,
had at least two serious/chronic health conditions (defined by ICD-9 codes matching
conditions listed in validated measures of comorbidity),26,27 had been seen at least twice in
the prior year by a primary care provider in the General Medicine, Geriatrics, or Women’s
Clinics, and had two additional clinic/hospital/emergency visits in the past year. Patients
with evidence of dementia, blindness, cognitive impairment, delirium, psychosis, or active
substance abuse by chart review or screening were ineligible. We obtained permission from
primary care providers to approach their patients and then recruited participants by letters,
flyers, phone calls, and in-clinic recruitment. Participants provided informed written
consent. The study was approved by the University of California, San Francisco (UCSF) and
the SFVAMC institutional review boards.
Measures
Measures included the frequency of ACP documentation, defined as legal forms/orders and
documented ACP discussions (Figure 1). Forms/orders included any prior scanned advance
directives or living wills, durable power of attorney for healthcare (DPOAHC) forms, and
orders including outpatient Do Not Resuscitate/Do Not Intubate (DNR/DNI) orders or
Physician Orders for Life Sustaining Treatment (POLST). For ACP discussions, chart notes
were reviewed within the prior five years. Two independent coders reviewed all medical
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records. Disagreements were resolved by consensus. To qualify as a documented ACP
discussion, written evidence of participant engagement and input in a conversation was
required; documentation that participants were only provided educational materials was not
counted.
For legal forms/orders, we assessed the type (e.g., advance directive, DPOAHC, POLST, and
code order), overall frequency, and mean elapsed time between form/order completion and
study enrollment. For participants with multiple forms/orders, all types were described and
the most recent form/order was used to calculate overall frequency and timing. Also,
because patients with completed legal forms/orders should ideally have accompanying ACP
discussions to explain their decision-making process, we determined how many patients
with a legal form/order had a documented ACP discussion.
For ACP discussions, we assessed the frequency, type, and timing of documented
information, the author of the note, and location and accessibility in the EHR. Rates of
discussion completion, as a percentage of all study participants, as well as mean elapsed
time between discussion completion and study enrollment, were computed. For participants
with multiple documented discussions, the most recent discussion was used. The type of
documented discussions was categorized as follows: “goals of care” (i.e., a discussion
describing participants’ wishes, reasoning, and thought processes), “code status only” (i.e.,
DNR/DNI or Full Code or Comfort Care noted in discussion documentation without
documentation of participants’ reasoning or thought processes), “surrogate decision maker,”
and discussions about “legal documents.” Discussions often included multiple categories.
Data are presented for each content category as percentages of the total number of
participants with discussions. Authorship was categorized by discipline: primary care
provider, inpatient/outpatient social worker, inpatient medical team, or outpatient
psychologist. The location of each ACP discussion was determined by the note type. The
SFVAMC EHR uses note templates for ACP which are captured in a central posting area on
the face page of the patients’ medical record. The accessibility of each ACP discussion was
determined by whether it could be located in the centralized posting area. If it could, the
discussion was deemed “easily accessible.” Documented discussions which could only be
found by searching free-text from chart notes, including hospital admission, discharge,
emergency department, outpatient primary care, specialty clinic, social work, and surgical/
anesthesia pre-operative notes, were deemed “not easily accessible.”
For both ACP forms/orders and ACP discussions, we assessed preferred level of treatment
using categories based on POLST and other scope-of-treatment documents.22 Preferences
were categorized as “Aggressive” care (i.e., documented Full Code or affirmative to
intubation, CPR, and all other life sustaining treatments without evidence of wanting to limit
treatments in any situation), “Limited Aggressive” care (i.e., documented Full Code,
affirmative to CPR and intubation but not indefinitely and not in every situation), “DNR/
DNI-Limited” (i.e., negative response to intubation or CPR, but affirmative to surgery,
antibiotics, or feeding tubes), or “DNR/DNI-Comfort” (i.e., negative responses to CPR and
intubation with specific documentation of the term “comfort measures only”). The category
of “No Wishes Documented” was used if preferences could not be categorized by these
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criteria. Rates of each desired level of treatment are presented as percentages of all
participants with completed forms or discussions, respectively.
Once treatment preferences were categorized, we determined whether physician orders
accompanied DNR/DNI documentation in advance directives or discussions. An
accompanying DNR/DNI physician order or POLST is considered appropriate so that
patients’ wishes can be honored across health settings.28 Thus, we assessed rates of POLST
or outpatient DNR/DNI orders for participants whose advance directives and/or ACP
discussions were categorized as DNR/DNI.
We also assessed changes in treatment preferences between forms/orders and subsequent
ACP discussions with discernible levels of desired treatment (e.g., Aggressive, DNR/DNI-
Comfort, etc.). Levels of desired treatment were categorized as “changed” if they differed
between forms/orders and subsequent ACP discussions. For these participants, we
categorized the changes as “more aggressive” or “less aggressive” based on how their
preferences changed in more recent documented ACP discussions relative to prior forms.
Determining the accessibility of ACP discussions that document changes in treatment
preferences is important so that patients’ most updated wishes can be honored. Therefore,
we assessed time between form completion and subsequent ACP discussions and the
accessibility of the ACP discussion that documented the treatment change.
Statistical Analysis
To describe participant characteristics and our measures, we used percentages and means
with standard deviations. Analyses were conducted using SAS statistical software (version
9.4; SAS Institute Inc.).
Results
Participants
The mean age of the 414 participants was 71 years (SD ±8) (Table 1). Participants were
mostly men (91%), 43% were non-white by self-report, 18% had less than a high school
education, 20% had limited health literacy, 29% self-rated their health as fair-to-poor on a 5-
point Likert scale, and 92% reported having a potential surrogate decision maker. Of the 414
participants, 212 (51%) had some type of ACP documented in the EHR.
ACP legal forms and Physician Orders
One hundred forty-nine participants (36%) had completed ACP legal forms at any time,
including 130 advance directives/living wills and 103 DPOAHC forms. These forms were
completed an average of 4.6 years (SD ±3.2) prior to study enrollment (Table 2). Three
POLST forms were completed and two participants had outpatient DNR/DNI orders. Of 149
participants with ACP legal forms/orders, 75 (50%) had an accompanying documented ACP
discussion.
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ACP discussions
In the five years prior to study enrollment, 138 (33%) study participants had documented
ACP discussions. These discussions occurred 2.1 years (SD ±1.4) prior to study enrollment
and focused on surrogate decision makers (n=115, 83% of participants with discussions),
goals of care (n=45, 33%), legal documents (n=36, 26%), and code status (n=23, 17%).
Overall, discussions were documented predominantly by social workers (n=75, 54%) and
outpatient primary care providers (n=49, 36%) (Table 3). Inpatient primary teams
documented 12 discussions (9%), while one discussion each was documented by an
outpatient palliative care provider, and an outpatient psychologist.
Of 138 ACP discussions, 62 (45%) were easily accessible and 76 (55%) were not easily
accessible from the EHR. Of the easily accessible discussions, 58 (94%) were documented
by social workers, two by inpatient primary teams, and one each by a primary care provider
and an outpatient palliative care provider. Of the not easily accessible discussions, 48 (63%)
were documented as free-text by primary care providers in progress notes and 17 (22%)
were documented in social work notes. By provider type, 58 (77%) of 75 discussions
documented by social workers were easily accessible, while one (2%) of 49 discussions
documented by primary care providers was easily accessible.
Treatment Preferences and Physician Orders
Participants expressed preferences for desired level of treatment in 83% of completed ACP
forms/orders and 39% of discussions (Table 4). In legal forms/orders, the most frequently
desired level of treatment was DNR/DNI-Limited (56%). Among ACP discussions, the most
frequently desired level of treatment was Limited Aggressive (46% of those with discernible
wishes). Among the 88 participants with DNR/DNI wishes in advance directives, two (2%)
had active DNR/DNI orders and two (2%) had completed POLST forms. Of the 15
participants with DNR/DNI wishes in discussions, no participants had active DNR/DNI
orders and two (13%) had completed POLST forms.
Changes in Preferences
During the 5-year retrospective review of the EHR, 34 participants had completed a legal
form/order and then had a subsequent ACP discussion where levels of preferred treatment
were documented. Discussions occurred an average of 3.9 years (SD ±3.4) after form/order
completion. For 27 (79%) of these participants, discussions documented a change in
participants’ treatment preferences: nine (33%) to more aggressive treatment and 18 (67%)
to less aggressive treatment. For 19/27 (70%) participants with changed preferences, the
documented ACP discussions were not easily accessible in the EHR: nine (100%) of those
documenting more aggressive treatment preferences and 10 (56%) of those documenting
less aggressive treatment preferences.
Discussion
To our knowledge, this is the first study to describe the comprehensive type, authorship,
location, and accessibility of ACP documentation through detailed electronic chart review.
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The VA is an exceptional national model of ACP documentation in that it includes a
centralized posting section in the EHR for ACP, is dedicated to ACP initiatives,13–17,25,29
and half of chronically ill, older Veterans in this study had documented ACP wishes, well
above national norms.30 However, given that many non-VA health systems do not have
similar established EHRs and dedicated ACP programs, these study findings point to a likely
widely generalizable quality improvement gap for patient safety in ACP. For example, 50%
of patients with a completed form or physician order in this study did not have an
accompanying documented ACP discussion about that form/order in the EHR. In addition,
the majority of ACP discussions were not easily accessible, though they were more up-to-
date (i.e., on average two years versus five years prior) and often represented changes in
wishes from prior forms/orders. A majority of ACP discussions, including those which were
easily accessible, were also documented by social workers rather than primary care
providers.
These results are similar to a Canadian study of hospitalized patients demonstrating that
patients’ and families’ wishes were not being documented correctly in the medical record.22
Lack of accurate and accessible ACP documentation represents an important patient safety
issue that could have devastating ramifications on patients’ care.23 Having up-to-date, easily
accessible descriptions of patients’ wishes for medical care in an ACP discussion note in the
EHR is essential to ensuring patients engage in fully informed shared decision-making about
their preferences, interpreting the meaning behind legal forms/orders, conveying important
information to other treating physicians about real-time and ongoing changes in patients’
preferences, and ensuring that patients’ wishes are honored. The insight provided by
documented discussions also provides crucial context for future discussions with additional
medical providers.
However, in this study, half of participants with completed ACP legal forms had no
accompanying documented discussions. Ensuring all forms/orders are accompanied by a
corresponding ACP note may be an important quality improvement metric in addition to
advance directive or form/order completion. In addition, the majority of ACP discussions
were not easily accessible and were documented as free-text in progress notes without any
associated notification or flag in the central posting section of the EHR. This minimizes the
likelihood that a future clinician would notice and be able to use this information in an
actionable way at the bedside. Although many providers are having detailed ACP
discussions with patients, the lack of standardized documentation practices limits the clinical
utility of these discussions.
The lack of standardization was most concerning when documented preferences changed
between legal forms/orders and subsequent discussions, especially as 70% of these changes
in preferences were not easily accessible in the EHR. Future providers who do not notice or
cannot find subsequent free-text discussions in the EHR are likely to default to more easily
located forms/orders which may contain outdated patient preferences. These forms/orders
were, on average, completed five years prior to study enrollment, and more frequent updates
are needed as demonstrated by the high rate of changed preferences among those with
subsequent discussions. Use of such out-of-date documentation may lead to care misaligned
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with patients’ preferences. When extrapolated on a population level, these misaligned
documented wishes could affect many patients.
ACP discussions were most frequently documented by social workers followed by primary
care providers. The involvement of social workers in this process is a strength of the
integrated Patient Aligned Care Teams (PACT) in the VA system and likely positively
impacts ACP documentation overall. However, in some cases, the additional involvement of
the primary care provider to provide context regarding patients’ medical conditions and
prognoses may also be important. Primary care providers documented only 2% of ACP
discussions in an easily accessible location compared to 77% of social workers’
documentation. This discrepancy may reflect differences between training curricula and
could likely be improved with educational interventions. The extremely low use of POLST
and DNR/DNI orders for the subset of patients with preferences for DNR/DNI also reveals
an opportunity for improvement of the ACP documentation process.
While prior research has focused on increasing rates of legal form completion31–33 or
techniques to conduct effective ACP discussions,34–36 interventions focusing on appropriate
documentation of ACP discussions are less prevalent.14 Such an intervention could have a
large impact on clinical care and patient safety23 and may require minimal behavioral
change from clinicians since our study demonstrated that many are already having and
recording rich ACP discussions. In addition, changes to the EHR that would allow clinicians
to easily flag goals of care conversations within other progress notes, to be placed in
important central EHR posting areas, may negate the need for remembering specific note
titles.
The strengths of this study include the comprehensive nature of chart review performed by
two independent reviewers. Limitations include the predominantly older and male
population of Veterans recruited from a single medical center who were participating in a
study of ACP, which may restrict generalizability. However, the study population was
diverse in other demographic characteristics. In this cross-sectional study, we were unable to
assess changes in behavior over time, nor determine whether patients received care
consistent with their most up-to-date preferences. However, our data provide an assessment
of the current state of practice which can be used to inform future studies.
Conclusions
These results suggest potential areas for EHR redesign and quality improvement to ensure
patient safety and patient-centered care in ACP. Quality improvement targets include
clinician education concerning documentation of ACP discussions in an easily accessible
location in the EHR, especially to help explain preferences for patients with completed ACP
legal forms and changes to patients’ preferences over time. More frequent updating of
patient’s wishes and completion of physician orders for patients with clear and stable
DNR/DNI wishes may also be needed. Further study, including the design of the EHR, is
needed to better understand how to improve ACP documentation practices and help ensure
patients’ wishes are honored.
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Acknowledgments
Drs. Walker and Sudore had full access to all the data in the study and take responsibility for the integrity of the
data and the accuracy of the data analysis.
Funding/Support: The U.S. Department of Veterans Affairs
Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study, data collection,
management, analysis, and interpretation of data, or in preparation, review, or approval of the manuscript.
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28. Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives.
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29. Lum HD, Jones J, Matlock DD, et al. Advance care planning meets group medical visits: the
feasibility of promoting conversations. Ann Fam Med. 2016; 14(2):125–132. [PubMed: 26951587]
30. Yadav KN, et al. Approximately one in three US adults completes any type of advance directive for
end-of-life care. Health Aff (Millwood). 2017; 36(7):1244–1251. [PubMed: 28679811]
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advance directive completion rates. J Aging Health. 2007; 19(3):519–536. [PubMed: 17496248]
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17302667]
33. Morrison RS, Chichin E, Carter J, Burack O, Lantz M, Meier DE. The effect of a social work
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Key Points
Question
What are the current advance care planning documentation practices at a VA Medical
Center and how accessible are documented advance care planning discussions in the
electronic health record?
Findings
In this cross-sectional study of 414 chronically ill Veterans, half had documented advance
care planning wishes, including one third with documented discussions. Most (55%)
discussions were not easily accessible in the medical record, including 70% of those
documenting treatment wishes which had changed from prior legal forms/orders.
Meaning
Efforts to improve standardization and accessibility of advance care planning
documentation are imperative to ensure patient safety and patients’ wishes are honored.
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Figure 1. All study measures assessed by chart review
ACP indicates Advance Care Planning; DNR/DNI, Do Not Resuscitate/Do Not Intubate;
DPOAHC, Durable Power of Attorney for Health Care; EHR, Electronic Health Record;
POLST, Physician Orders for Life Sustaining Treatment.
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Table 1
Demographic characteristics of study participants.
Demographic Characteristics
Age: N=414, mean (SD) 71.1 (7.8)
Sex: Women, N=414, No. (%) 38 (9%)
Race/Ethnicity: N=413, No. (%)
White 235 (57%)
African American 88 (21%)
Latino/Hispanic 33 (8%)
Native American 5 (1%)
Asian/Pacific Islander 26 (6%)
Multi-ethnic/Other 26 (6%)
Education ≤ high school: N=413, No. (%) 74 (18%)
Finances, not enough to make ends meet: N=412, No. (%) 49 (12%)
In a married/long term relationship: N=414, No. (%) 187 (45%)
Have a potential surrogate: N=414, No. (%) 382 (92%)
Self-Rated Health, fair-to-poor: N=412, No. (%) 120 (29%)
Limited Health Literacy, N=411, No. (%) 83 (20%)
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Table 2
ACP legal forms and physician orders.
Type of ACP Forms/Orders Completed Forms/Orders N=414, No. (%) Time prior to study enrollment (mean years ± SD)
Advance Directive 130 (31%) 5.0 ± 3.3
DPOAHC Form 103 (25%) 5.6 ± 3.7
POLST 3 (0.7%) 1.9 ± 1.5
DNR/DNI Order 2 (0.5%) 4.1 ± 0.7
Any ACP Forms/Orders 149 (36%) 4.6 ± 3.2
ACP indicates Advance Care Planning; DNR/DNI, Do Not Resuscitate/Do Not Intubate; DPOAHC, Durable Power of Attorney for Health Care;
POLST, Physician Orders for Life-Sustaining Treatment.
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Table 3
Location and authorship of documented ACP discussions in the EHR
a
Easily Accessible N = 62 (45%)
Author Location in EHR No. (%)
Inpatient Social Worker ACP Posting
b
35 (25%)
Outpatient Social Worker ACP Posting 23 (17%)
Inpatient Medical Team ACP Posting 2 (1.4%)
Primary Care Provider ACP Posting 1 (0.7%)
Outpatient Palliative Care Provider ACP Posting 1 (0.7%)
Not Easily Accessible N = 76 (55%)
Author Location in EHR No. (%)
Primary Care Provider Outpatient Progress Note 48 (35%)
Inpatient Social Worker Inpatient Social Work Note 13 (9.4%)
Inpatient Medical Team Admission Note 5 (3.6%)
Outpatient Social Worker Outpatient Social Work Note 4 (2.9%)
Inpatient Medical Team Discharge Summary 2 (1.4%)
Inpatient Medical Team Inpatient Progress Note 1 (0.7%)
Inpatient Medical Team Inpatient Progress Note Addendum 1 (0.7%)
Inpatient Medical Team Inpatient Pre-Operative Note 1 (0.7%)
Outpatient Psychologist Outpatient Progress Note 1 (0.7%)
Time between ACP discussion documentation and study enrollment (mean years ± SD) 2.1 ± 1.4
a
n = 138 documented advance care planning discussions.
b
The ACP posting location is a centralized, easily accessible location on the face page of a participant’s electronic health record. ACP indicates
Advance Care Planning; EHR, Electronic Health Record.
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Table 4
Desired level of treatment documented in legal forms and ACP discussions.
Level of Treatment Desired ACP legal forms N = 149, No. (%) ACP discussions N = 138, No. (%)
Aggressive 9 (6%) 14 (10%)
Limited Aggressive 26 (17%) 25 (18%)
DNR/DNI-Limited 83 (56%) 10 (7%)
DNR/DNI-Comfort 5 (3%) 5 (3%)
No Wishes Documented 26 (17%) 84 (61%)
ACP indicates Advance Care Planning; DNR/DNI, Do Not Resuscitate/Do Not Intubate.
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... Historically, a significant portion of clinically meaningful ACP has been buried in the notes and hard to find at the point of care. 39 However, EHR dashboards for ACP information and the use of "smart phrases" as well as natural language processing and machine learning algorithms are helping to bridge this gap so that clinically meaningful information can be available for both research and clinical purposes. 40,41 Is ACP Effective? ...
... 79,80 Furthermore, we are hopeful that ACP billing may expand to other care team members, such as social workers, who are exceptionally trained and skilled at these discussions. 39,[81][82][83] When measuring ACP, more appropriate short-and longterm outcomes of ACP should be focused on patient and surrogate satisfaction and decreased surrogate and clinician decision-making burden and moral distress. Finally, for measurement of ACP and quality metrics, a focus on "clinically meaningful ACP" (narrative notes in addition to forms and orders), is also important. ...
Article
Full-text available
Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACP’s evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of “clinically meaningful” ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients’ values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACP’s continued evolution to better serve patients and their care partners.
... Implementing these documents into a singular EHR has difficulties, including vague language and accessibility. 6,[9][10][11][12] Overcoming these barriers requires a multifactorial approach, including EHR modifications, provider and patient education, and an interdisciplinary method of acquiring and recording documentation. Completing patient ADs is essential to improving safety and quality of care within our healthcare system. ...
... The baseline rate for MPOA, LW, and code status (7.33%, 6.00%, and 5.33%, respectively) was less than reported by other health systems (13-36%). 10,11,13,15 The benefits and barriers to completing ACP and documenting ADs are well known. [2][3][4][5][6][7][8] The Centers for Medicare and Medicaid Services have attempted to address the time and reimbursement barrier by implementing ACP billing in 2016. ...
... Participants did not address the need for medical records to reflect the agreements reached during ACP. Recording the ACP process is in fact part of it and is a step that facilitates continuity of care and an appropriate use of care resources [35,36]. In a study carried out at our institution, references to ACP in the medical records of deceased patients were examined [37]. ...
Article
Full-text available
Purpose The objective of this study is to identify the beliefs, values, perceptions, and experiences of medical oncology, radiation oncology, and clinical haematology professionals about the advance care planning process. Methods Qualitative exploratory study. There were four focus groups with 14 nurses and 12 physicians (eight medical oncology, one radiation oncology, three haematology). A reflexive thematic analysis of the data obtained was performed. Results We identified 20 thematic categories, which we grouped into four themes: lack of knowledge about advance care planning; perception of the advance care planning process: knowledge acquired from practice; barriers and facilitators for the implementation of advance care planning; and communication as a key aspect of advance care planning. Conclusions The participants valued advance care planning as an early intervention tool that promotes autonomy. They perceived difficulties in approaching planning due to lack of knowledge, training, and time. They identified the therapeutic relationship with the person, the participation of the person’s loved ones, teamwork, and communication skills as essential to ensuring the quality of the process. Finally, they recognised that palliative care professionals provide added value in supporting planning processes.
... Based upon the measure, data can be gathered from various sources, including medical records, patient studies, and authoritative databases used to take care of bills or to oversee care. Each of these sources may have other basic roles, so there are focal points and difficulties when they are utilized for the reasons for quality estimation and reporting (Walker, 2018). ...
Research
Full-text available
The present healthcare organizations are growing from volume-based business into value-based business, which requires a hard work from physicians and medical caretakers to be more profitable and effective. This will improve health care practice on, changing individuals way of life and driving them into longer life, prevent sickness, diseases and contaminations. In recent years, health care information has become progressively complex because huge measures of information, alongside the fast changing technologies and portable applications and new illnesses have found.
... Inconsistencies in location and quality of ACP documentation in EMR systems poses a major obstacle to effective ACP implementation and may lead to HCPs being unable to access ACP information at critical points in a patient's care. 19,20 Nursefacilitators can assist HCPs by taking on the responsibility of organising ACP documentation in EMR; yet, our findings highlight HCPs still require additional support to ensure they are familiar with the systems and processes for storing and accessing ACP documentation. ...
Article
Full-text available
Objective This study sought to determine the feasibility and acceptability of a facilitated advance care planning (ACP) intervention implemented in outpatient clinics, as perceived by health‐care professionals (HCPs). Methods Data from seven focus groups ( n = 27) and nine semi‐structured interviews with HCPs recruited as part of a pragmatic, randomised controlled trial (RCT) were analysed using qualitative descriptive methodology. Components of the intervention included HCP education and training, tools to assist HCPs with patient selection, hardcopy information, and ACP documentation, and specialised nurse‐facilitators to support HCPs to complete ACP conversations and documentation with patients and caregivers. Results Health‐care professionals working in tertiary outpatient clinics perceived the facilitated ACP intervention as feasible and acceptable. Health‐care professionals reported a high level of satisfaction with key elements of the intervention, including the specialised education and training, screening and assessment procedures and ongoing support from the nurse‐facilitators. Health‐care professionals reported this training and support increased their confidence and ACP knowledge, leading to more frequent ACP discussions with patients and their families. Health‐care professionals noted their ability to conduct ACP screening and assessment in clinic was impeded by large clinical caseloads and patient‐related factors (e.g., dementia diagnoses, and emotional distress). Additional barriers to ACP implementation identified by HCPs included poor collaboration, constrained time and clinical space, undefined roles and standardised recording procedures for HCPs. Conclusions Facilitated ACP intervention in outpatient clinics is perceived by HCPs as feasible and acceptable. Addressing barriers and tailoring implementation strategies may improve the delivery of ACP as part of tertiary outpatient care.
... The available information shows that nurses can formulate educated care plans for their patients easily. (Ehrenstein et al., 2019;Evans, 2016;Walker et al., 2018). A systematic approach to health care and clinical decision making that supports patient safety can be assured by the completeness of the data supported by EHRs, including, for example, medical diagnosis, list of medications, and history of allergies.. Data entry errors, specifically the use of template checkboxes that can cause errors in incongruity, are one of the concerns. ...
Article
Background: Sharing information about nursing perception on the EHR is important. Nursing is a high utilizer of the EHR and without accurate and complete information in the EHR, patient safety risks increase. Aim: The objectives of this article was to explore nurses’ experience using Electronic Health Record (EHR). Method: Qualitative semi-structured interviews were conducted with 14 nurses in Jakarta hospital. Nurses were recruited from the inpatient room. The study was analyzed using Colaizzi's method of thematic analysis. Results: Nurses using EHRs in the inpatient room through the following items: 1) Data Processes; 2) barriers using EHR; and 3) nurse communication. Conclusion: Nurses are aware of the significance and standards of checking patient data, but their commitment is mitigated by some considerations including need or risk evaluation, the effect on their patient relationship, and hospital climate policies that protect the privacy of patients.
Article
Introduction: A key element of advance care planning (ACP) is the goals of care (GOC) conversation between the provider and the patient. The value of meaningful GOC conversations for the patient, provider, and health care institution is well documented. However, if the GOC documentation is buried in the medical record, not well defined, or poorly documented, that value is squandered. The Improvement Process: Interventions were implemented with oncology physicians and nurse practitioners (NPs). These included education, system reform including improving the ease and consistency of documentation of ACP, and regular feedback. Results: Participants reported increased confidence in communication skills about GOC conversations postworkshops. Data results for the tracked metrics, health care power of attorney, code status, and GOC, all showed improvement. Conclusion: Physicians and NPs recognized the importance of GOC conversations as part of ACP. Considerable progress was made by focusing on GOC conversations, maximizing information technology, participating in coaching, and ongoing data monitoring.
Article
Full-text available
Context Healthcare consumers are encouraged to develop an Advance Care Plan (ACP) to help to ensure their preferences are known and respected. However, the role of governing systems in the application of ACPs must be understood if patients’ voices (expressed within this medium) are to be heard. Objective To explore systemic barriers influencing Queensland public hospital doctors’ application of the Advance Care Plans of hospitalized people with a neurodegenerative disorder. Methods Using a constructivist grounded theory approach, 16 semi structured interviews were conducted with public hospital doctors. Data were inductively analysed using open and focused coding. Results Analysis revealed two main themes: Practicing Medicine within a Legal Construct, and Delegitimizing ACP. Participants found the application of ACP in Queensland unduly complex, and they were inadequately prepared by education or training. Doctors maintained a dominant role in temporal medical decision-making and cited hospital practice culture for delegitimizing patient-owned ACPs. Conclusion The public healthcare system in Queensland exerts considerable influence over the degree to which ACPs influence decision-making. Despite the premise that ACPs give patients a powerful voice, hospital doctors often do not understand the underpinning law on which they depend when citing their responsibility for good medical practice. Systemic influences have contributed to a practice culture that has delegitimized the patient’s voice when expressed through an ACP.
Article
Purpose: Code status orders are standard practice impacting end-of-life care for individuals. This study reviews the impact of a COVID unit on physician behaviors towards goal-concordant end-of-life care at an urban academic tertiary-care hospital. Methods: We conducted a retrospective cohort study of code status ordering on adult inpatients comparing the pre-pandemic period to patients who tested positive, negative and were not tested during the pandemic from January 1, 2019, to December 31, 2020. Results: We analyzed 59,471 unique patient encounters (n = 35,317 pre-pandemic and n = 24,154 during). 1,631 cases of COVID-19 were seen. The rate of code status orders among all inpatients increased from 22% pre-pandemic to 29% during the pandemic ( P < .001). Code status orders increased for both patients who were COVID-negative (32% P < .001) and COVID-positive (65% P < .001). Being in a cohorted COVID unit increased code status ordering by an odds of 4.79 ( P < .001). Compared to the pre-pandemic cohort, the COVID-positive cohort is less female (50% to 56% P < .001), more Black (66% to 61% P < .001), more Hispanic (6.5% to 5%) and less white (26% to 30% P < .001). Compared to Black patients, white patients had lower odds (.86) of code status ordering ( P < .001). Other race/ethnicity categories were not significant. Conclusions: Code status ordering remains low. Compared to pre-pandemic rates, the frequency of orders placed significantly increased for all patients during the pandemic. The largest increase occurred in patients with COVID-19. This increase likely occurred due to protocols in the COVID unit and disease uncertainty.
Article
Full-text available
Context: Advance care planning (ACP) is valued by patients and clinicians, yet documenting ACP in an accessible manner is problematic. Objectives: In order to understand how providers incorporate electronic health record (EHR) ACP documentation into clinical practice, we interviewed providers in primary care and specialty departments about ACP practices (n = 13) and analyzed EHR data on 358 primary care providers (PCPs) and 79 specialists at a large multispecialty group practice. Methods: Structured interviews were conducted with 13 providers with high and low rates of ACP documentation in primary care, oncology, pulmonology, and cardiology departments. The EHR problem list data on Advance Health Care Directives (AHCDs) and Physician Orders for Life-Sustaining Treatment (POLST) were used to calculate ACP documentation rates. Results: Examining seriously ill patients ≥65 years with no preexisting ACP documentation seen by providers during 2013 to 2014, 88.6% (AHCD) and 91.1% (POLST) of 79 specialists had zero ACP documentations. Of 358 PCPs, 29.1% (AHCD) and 62.3% (POLST) had zero ACP documentations. Interviewed PCPs often believed ACP documentation was beneficial and accessible, while specialists more often did not. Specialists expressed more confusion about documenting ACP, whereas PCPs reported standard clinic workflows. Problems with interoperability between outpatient and inpatient EHR systems and lack of consensus about who should document ACP were sources of variations in practices. Conclusion: Results suggest that providers desire standardized workflows for ACP discussion and documentation. New Medicare reimbursement for ACP and an increasing number of quality metrics for ACP are incentives for health-care systems to address barriers to ACP documentation.
Article
Full-text available
Context: To ensure patient-centered end-of-life care, advance care planning (ACP) must be documented in the medical record and readily retrieved across care settings. Objective: To describe use of the Care Directives Activity tab (CDA), a single-location feature in the electronic health record for collecting and viewing ACP documentation in inpatient and ambulatory care settings, and to assess its association with ACP documentation rates. Design: Retrospective pre- and postimplementation analysis in 2012 and 2013 at Kaiser Permanente Southern California among 113,309 patients aged 65 years and older with ACP opportunities during outpatient or inpatient encounters. Main outcome measures: Providers' CDA use rates and documentation rates of advance directives and physician orders for life-sustaining treatments stratified by CDA use. Results: Documentation rates of advance directives and physician orders for life-sustaining treatments among patients with outpatient and inpatient encounters were 3.5 to 9.6 percentage points higher for patients with CDA use vs those without it. The greatest differences were for orders for life-sustaining treatments among patients with inpatient encounters and for advance directives among patients with outpatient encounters; both were 9.6 percentage points higher among those with CDA use than those without it. All differences were significant after controlling for yearly variation (p < 0.001). Conclusion: Statistically significant differences in documentation rates between patients with and without CDA use suggest the potential of a standardized location in the electronic health record to improve ACP documentation. Further research is required to understand effects of CDA use on retrieval of preferences and end-of-life care.
Article
Full-text available
Purpose: Primary care needs new models to facilitate advance care planning conversations. These conversations focus on preferences regarding serious illness and may involve patients, decision makers, and health care providers. We describe the feasibility of the first primary care-based group visit model focused on advance care planning. Methods: We conducted a pilot demonstration of an advance care planning group visit in a geriatrics clinic. Patients were aged at least 65 years. Groups of patients met in 2 sessions of 2 hours each facilitated by a geriatrician and a social worker. Activities included considering personal values, discussing advance care planning, choosing surrogate decision-makers, and completing advance directives. We used the RE-AIM framework to evaluate the project. Results: Ten of 11 clinicians referred patients for participation. Of 80 patients approached, 32 participated in 5 group visit cohorts (a 40% participation rate) and 27 participated in both sessions (an 84% retention rate). Mean age was 79 years; 59% of participants were female and 72% white. Most evaluated the group visit as better than usual clinic visits for discussing advance care planning. Patients reported increases in detailed advance care planning conversations after participating (19% to 41%, P = .02). Qualitative analysis found that older adults were willing to share personal values and challenges related to advance care planning and that they initiated discussions about a broad range of relevant topics. Conclusion: A group visit to facilitate discussions about advance care planning and increase patient engagement is feasible. This model warrants further evaluation for effectiveness in improving advance care planning outcomes for patients, clinicians, and the system.
Article
Full-text available
Background: Advance care planning (ACP) is a process whereby patients prepare for medical decision-making. The traditional objective of ACP has focused on the completion of advance directives. We have developed a new paradigm of ACP focused on preparing patients and their loved ones for communication and informed medical decision-making. To operationalize this new paradigm of ACP, we created an interactive, patient-centered website called PREPARE ( www.prepareforyourcare.org ) designed for diverse older adults. Methods/design: This randomized controlled trial with blinded outcome assessment is designed to determine the efficacy of PREPARE to engage older Veterans in the ACP process. Veterans who are ≥ 60 years of age, have ≥ two medical conditions, and have seen a primary care physician ≥ two times in the last year are being randomized to one of two study arms. The PREPARE study arm reviews the PREPARE website and an easy-to-read advance directive. The control arm only reviews the advance directive. The primary outcome is documentation of an advance directive and ACP discussions. Other clinically important outcomes using validated surveys include ACP behavior change process measures (knowledge, contemplation, self-efficacy, and readiness) and a full range of ACP action measures (identifying a surrogate, identifying values and goals, choosing leeway or flexibility for the surrogate, communicating with clinicians and surrogates, and documenting one's wishes). We will also assess satisfaction with decision-making and Veteran activation within primary care visits by direct audio recording. To examine the outcomes at 1 week, 3 months, and 6 months between the two study arms, we will use mixed effects linear, Poisson, or negative binomial regression and mixed effects logistic regression. Discussion: This study will determine whether PREPARE increases advance directive completion rates and engagement with the ACP process. If PREPARE is efficacious, it could prove to be an easy and effective intervention to help older adults engage in the ACP process within or outside of the medical environment. PREPARE may also help older adults communicate their medical wishes and goals to their loved ones and clinicians, improve medical decision-making, and ensure their wishes are honored over the life course. Trial registration: ClinicalTrials.gov NCT01550731 . Registered on 8 December 2011.
Article
Full-text available
Advance Care Planning (ACP) remains extremely low in the US, due to numerous institutional and cultural barriers and discomfort in discussing death. There is a need for guidance about how patient and healthcare providers can effectively engage in ACP discussion. Here we analyze the linguistic strategies that focus-group participants use when discussing ACP in detailed ways. Prevalent linguistic structures in effective ACP discussions were loved ones' end-of-life narratives, hypothetical narratives, and constructed dialogue. In elucidating spontaneous, unprompted approaches to effective discussion of end-of-life issues, such research can help to dislodge communicative barriers to ACP so that more people are prepared to engage the process.
Article
Efforts to promote the completion of advance directives implicitly assume that completion rates of these documents, which help ensure care consistent with people's preferences in the event of incapacity, are undesirably low. However, data regarding completion of advance directives in the United States are inconsistent and of variable quality.We systematically reviewed studies published in the period 2011-16 to determine the proportion of US adults with a completed living will, health care power of attorney, or both. Among the 795,909 people in the 150 studies we analyzed, 36.7 percent had completed an advance directive, including 29.3 percent with living wills. These proportions were similar across the years reviewed. Similar proportions of patients with chronic illnesses (38.2 percent) and healthy adults (32.7 percent) had completed advance directives. The findings provide benchmarks for gauging future policies and practices designed to motivate completion of advance directives, particularly among those people most likely to benefit from having these documents on record. © 2017 Project HOPE-The People-to-People Health Foundation, Inc.
Article
Importance: Documentation rates of patients' medical wishes are often low. It is unknown whether easy-to-use, patient-facing advance care planning (ACP) interventions can overcome barriers to planning in busy primary care settings. Objective: To compare the efficacy of an interactive, patient-centered ACP website (PREPARE) with an easy-to-read advance directive (AD) to increase planning documentation. Design, setting, and participants: This was a comparative effectiveness randomized clinical trial from April 2013 to July 2016 conducted at multiple primary care clinics at the San Francisco VA Medical Center. Inclusion criteria were age of a least 60 years; at least 2 chronic and/or serious conditions; and 2 or more primary care visits; and 2 or more additional clinic, hospital, or emergency room visits in the last year. Interventions: Participants were randomized to review PREPARE plus an easy-to-read AD or the AD alone. There were no clinician and/or system-level interventions or education. Research staff were blinded for all follow-up measurements. Main outcomes and measures: The primary outcome was new ACP documentation (ie, legal forms and/or discussions) at 9 months. Secondary outcomes included patient-reported ACP engagement at 1 week, 3 months, and 6 months using validated surveys of behavior change process measures (ie, 5-point knowledge, self-efficacy, readiness scales) and action measures (eg, surrogate designation, using a 0-25 scale). We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy, race/ethnicity, baseline ACP, and clustering by physician. Results: The mean (SD) age of 414 participants was 71 (8) years, 38 (9%) were women, 83 (20%) had limited literacy, and 179 (43%) were nonwhite. No participant characteristic differed significantly among study arms at baseline. Retention at 6 months was 90%. Advance care planning documentation 6 months after enrollment was higher in the PREPARE arm vs the AD-alone arm (adjusted 35% vs 25%; odds ratio, 1.61 [95% CI, 1.03-2.51]; P = .04). PREPARE also resulted in higher self-reported ACP engagement at each follow-up, including higher process and action scores; P <.001 at each follow-up). Conclusions and relevance: Easy-to-use, patient-facing ACP tools, without clinician- and/or system-level interventions, can increase planning documentation 25% to 35%. Combining the PREPARE website with an easy-to-read AD resulted in higher planning documentation than the AD alone, suggesting that PREPARE may increase planning documentation with minimal health care system resources. Trial registration: clinicaltrials.gov Identifier: NCT01550731.
Article
Background: Despite increasing interest in advance care planning (ACP) and prior ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives. Objective: To develop a consensus definition of ACP for adults. Design: Delphi Panel SETTING/PARTICIPANTS: Participants included a multidisciplinary panel of international ACP experts consisting of 52 clinicians, researchers, and policy leaders from 4 countries, and a patient/surrogate advisory committee. Measurements: We conducted 10 rounds of a modified Delphi method and qualitatively analyzed panelists' input. Panelists identified several themes lacking consensus, and iteratively discussed and developed a final consensus definition. Results: Panelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients' values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: "Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness." The panel also described strategies to best support adults in ACP. Conclusions: A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.
Article
Advance care planning (ACP) is an iterative process that includes discussions about preferences for end-of-life (EOL) care, completion of advance directives (AD), and designation of a surrogate decision maker in a durable power of attorney for health care (DPOA).¹,2 Engagement in ACP has increased over time.³ However, the rising tide of ACP may not have lifted all boats equally. Minorities, those with lower levels of educational attainment, and the poor may not have benefited from rising rates of ACP to the same extent that white, highly educated, affluent individuals have. Rates of ACP by older Latinos in particular are unknown. Further, we do not know if ACP uptake is greater among those in worse health and with poorer prognoses.
Article
Objectives To describe trends in advance directive (AD) completion from 2000 to 2010 and to explore the relationship between AD and hospitalization and hospital death at the end of life.DesignRetrospective cohort study.SettingHealth and Retirement Study (HRS).ParticipantsHRS participants who died between 2000 and 2010 and were aged 60 and older at death (N = 6,122).MeasurementsTrends over time in rates of AD completion, hospitalization before death, and death in hospital are described. The association between trends in AD completion and hospital death was then assessed by comparing nested, multivariable logistic regression models predicting the odds of hospital death over time with and without adjusting for AD status and sociodemographic characteristics. The complex sampling design was accounted for in all analyses.ResultsThe proportion of decedents with an AD increased from 47% in 2000 to 72% in 2010. At the same time, the proportion of decedents with at least one hospitalization in the last 2 years of life increased from 52% to 71%, and the proportion dying in the hospital decreased from 45% to 35%. After adjusting for confounding by sociodemographic characteristics, the trend in declining hospital death over the decade was negligibly associated with the greater use of ADs.Conclusion There has been a significant increase in rates of AD completion over the last decade, but this trend has had little effect upon hospitalization and hospital death, suggesting that AD completion is unlikely to stem hospitalization before death.