JOURNAL OF PALLIATIVE MEDICINE

Volume XX, Number XX, 2018 Original Article

ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2017.0374

Racial and Ethnic Differences in Advance Care Planning:

Results of a Statewide Population-Based Survey

Melissa A. Clark, PhD,1 Sharina D. Person, PhD,1 Anna Gosline, SM,2

Atul A. Gawande, MD, MPH,3,4 and Susan D. Block, MD3–6
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Abstract
Background: Few studies have focused on racial and ethnic differences in advance care planning other than
advance directives among population-based samples of adults across the lifespan.
Methods: Using data from a statewide random-digit dial telephone survey of adults 18 years or older (n = 1851),
we investigated racial and ethnic differences in (1) designation of a healthcare agent (HCA); and (2) com-
munication of goals, values, and preferences for end-of-life care with healthcare providers, a HCA, or other
family members and friends.
Results: Less than half (44%, 95% confidence interval [CI] = 41.3%–47.0%) of all participants had named a
HCA. In multivariable analyses, participants who identified as Hispanic (adjusted odds ratio [aOR] = 0.4, 95%
CI = 0.2–0.7) or non-Hispanic other (aOR = 0.6, 95% CI = 0.4–0.9) were less likely than non-Hispanic whites to
have named a HCA. Only 14.5% (95% CI = 12.6%–16.5%) of all participants had ever had a conversation with
a healthcare provider about their end-of-life care wishes, with no differences by race/ethnicity. Over half
(53.9%, 95% CI = 51.0%–56.8%) of all participants reported having had conversations with someone other than
a healthcare provider about their end-of-life wishes. In multivariable analyses, non-Hispanic whites were more
likely than Hispanics (aOR = 0.5, 95% CI = 0.3–0.7), black/African Americans (aOR = 0.5, 95% CI = 0.3–0.9),
and non-Hispanic others (aOR = 0.7, 95% CI = 0.5–1.0) to report having had such conversations.
Conclusions: Racial and ethnic minorities may be disadvantaged in the quality of care they receive if they have
a serious illness and are unable to make decisions for themselves because most have not talked to anyone about
their goals, values, or preferences for care.

Keywords: advance care planning; advance directive adherence; cross-cultural comparison

Introduction ACP can improve compliance with end-of-life wishes,

A dvance care planning (ACP) is a process that guides
individuals’ medical care to be consistent with their
goals and values if they are incapable of making decisions for
themselves.1–3 ACP can take many forms, including desig-
nation of a healthcare power of attorney (i.e., healthcare
agent [HCA], surrogate); completion of documents such as
an advance directive; and communication of values, goals,
and preferences for end-of-life care with medical providers, a
HCA, and other potential caregivers. ACP is not considered a
one-time event but a series of activities that should occur over
the lifespan, and may change over time as needed.1
enhance satisfaction with care, and result in more goal-
concordant and less aggressive care.4–6 ACP has also been
associated with reduced anxiety and depression, higher
quality of life, and increased satisfaction with end-of-life care
for caregivers and surrogates.5,7
Previous studies suggest differences in rates of ACP by race
and ethnicity. Studies have documented less use of advance
directives or other written ACP documents among African
American compared to white individuals in several different
population groups.4,8–18 Although less research about ACP
has been conducted with Hispanic individuals, available ev-
idence suggests that Hispanics are also less likely than non-

1
Department of Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, Massachusetts.
2
Blue Cross Blue Shield of Massachusetts, Boston, Massachusetts.
3
Department of Surgery, The Brigham and Women’s Hospital and Harvard Medical School, Boston, Massachusetts.
4
Ariadne Labs at Brigham and Women’s Hospital and the Harvard T. H. Chan School of Public Health, Boston, Massachusetts.
5
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.
6
Center for Palliative Care, Harvard Medical School, Boston, Massachusetts.
Accepted March 11, 2018.

1
 2 CLARK ET AL.
Hispanic whites to plan for end-of-life care.8,9,19,20 Studies
have also shown that racial/ethnic minorities tend to receive
more intensive end-of-life care, including life-sustaining in-
terventions,12,21–27 which may be the result of less ACP.12,28
To date, much of the research about racial and ethnic
differences in ACP has focused on completion of written
advanced directives (ADs),29 included samples of primarily
middle-aged and older adults or individuals with serious
medical conditions, and recruited participants from clinical
settings. Fewer studies have focused on racial/ethnic differ-
ences in ACP activities other than ADs among population-
based samples of adults across the lifespan. Given this, as
well as the extensive data demonstrating that written ADs
alone do not typically facilitate goal-concordant care,30–33
the goals of this study were to investigate racial and ethnic
differences in (1) designation of a HCA; and (2) communi-
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cation of values, goals, and preferences for end-of-life care
with healthcare providers, a HCA, or other family members
and friends among a randomly selected statewide sample of
adults ‡18 years of age. In addition, we explored reasons for
not engaging in ACP activities and the extent to which the
reasons differed by race/ethnicity.
Methods
Study design and participants
Data were from a statewide random-digit dial (RDD)
telephone survey. Telephone numbers were randomly gen-
erated for the State of Massachusetts from three sampling
frames (RDD landline, RDD cell phone, listed landline), and
individuals ‡18 years of age were randomly selected within
households. The study was determined exempt by the uni-
versity Institutional Review Board.
Data collection
Computer-Assisted Telephone Interviews were conducted
by SSRS, Inc. in March to April 2016, using Survox survey
software. Professional interviewers completed all data col-
lection. Interviewer training included at least 15 hours of
classroom sessions followed by project-specific training,
mock interviews, and pretests. At least six call attempts were
made to contact nonresponsive numbers by varying the times
of day and the days of the week. Interviews were conducted in
English or Spanish.
Measures
Outcomes
Naming a HCA. Participants were provided with defini-
tions of a healthcare proxy and HCA and were then asked
whether they had ever named someone as their HCA. Parti-
cipants who had named a HCA were asked if they had talked
to the person about their wishes, and if they had shared a copy
of the healthcare proxy form with their doctor.
ACP conversations. Participants were asked whether they
had ever had a conversation with a healthcare provider about
wishes for care near the end of life.34 They were also asked
whether they ever had a conversation with at least one person
other than a healthcare provider about end-of-life care
wishes. Participants who reported having had such conver-
sations with a healthcare provider, their HCA, or anyone else
were also asked if the conversations included such topics as
goals for care, abilities that were so critical to their life that
they could not imagine living without them, or whether or not
they wanted certain types of life-prolonging care. Those who
endorsed having had at least one such conversation were
asked with whom they had the conversation.
Reasons for not engaging in ACP activities. Participants
who had not named a HCA, did not want to talk to a
healthcare provider about end-of-life wishes, or had never
talked to anyone other than a healthcare provider about their
end-of-life wishes were asked reasons why they did not want
or had not engaged in these activities. Participants selected
from responses modeled from a 2013 national survey about
end-of-life care conversations.35
Race and ethnicity. Questions about race and ethnicity
were similar to items in the 2014 Behavioral Risk Factor
Surveillance System (BRFSS).36 Self-reported responses
were categorized into Hispanic, black/African American,
non-Hispanic white, or non-Hispanic other.
Other sample characteristics. Sociodemographic char-
acteristics included age, gender, marital status, education,
and household income. Participants were considered to have
a regular source of care if they had one person they thought of
as their personal doctor or healthcare provider. All socio-
demographic characteristics and regular source of care were
modeled from the 2014 BRFSS.36 Having a serious health
condition was defined as at least one hospital stay or serious
illness, medical condition, injury, or disability requiring a lot
of medical care in past 12 months.37 Participants were asked
whether they thought doctors should discuss end-of-life care
issues with patients.34 Finally, participants were asked how
much they had thought about their own wishes for medical
treatment if they were facing a health condition that made it
hard to function in day-to-day activities. Health insurance
status was not asked because <5% of Massachusetts residents
were uninsured.38
Statistical analyses
Participant responses were weighted to produce repre-
sentative estimates of population parameters using a three-
step process. First, we adjusted for likelihood of selection
based on the probability of a phone number being included in
the landline or cell phone sampling frame, likelihood a re-
spondent was reached by landline or cell phone, and likeli-
hood a respondent was selected if the household’s landline
phone was reached. Second, we conducted poststratification
weighting using iterative proportional fitting to reflect the
distribution of the adult Massachusetts population. We used
the March 2015 Supplement of U.S. Census Bureau’s Current
Population Survey39 for demographic benchmarks and the
National Health Interview Survey40 for estimates of cell
phone only use. Finally, we constrained the weights to control
the variance among them.
We assessed differences by race/ethnicity in the sample
characteristics using Pearson’s chi-squared tests. Second, we
compared ACP activities by race/ethnicity using Person’s
chi-squared tests. Next, we computed multivariable logistic
regression models to assess the relationship between race/
 RACIAL/ETHNIC DIFFERENCES IN ADVANCE CARE PLANNING 3

ethnicity and ACP activities controlling for other sample American were less likely to report being partnered. No other
characteristics. Before inclusion in multivariable models, we sample characteristics differed by race/ethnicity.
examined measures of association for all variables to deter-
mine potential problems with multicollinearity. To formally Naming a HCA
address multicollinearity, we computed model diagnostics
Less than half (44%, 95% confidence interval [CI] = 41.3%–
specifically assessing the variance inflation factor (VIF) as-
47.0%) of all participants had named a HCA. In multivariable
sociated with each variable. A VIF above 2 was deemed
analyses, participants who identified as Hispanic or non-
indicative of potential multicollinearity and required addi-
Hispanic other were less likely than non-Hispanic whites to
tional examination. Finally, we used frequency distributions
have named a HCA (Table 2, column 2). In addition, those ‡50
and Pearson’s chi-squared tests to assess reasons for not en-
years (vs. 18–49), female (vs. male), partnered (vs. not), and
gaging in ACP and the extent to which the endorsed reasons
reported having a serious health condition in the past 12 months
differed by race/ethnicity.
(vs. not) were more likely to have named a HCA.
All statistical analyses were conducted using SAS/STAT
Among those who had named a HCA, the majority (86.2%,
software, version 9.4 of SAS System for Windowsª 2013,
95% CI = 83.3%–89.2%) had talked to the HCA about their
SAS Institute. Two-tailed p-values of <0.05 were considered
end-of-life care wishes, but only half (54.2%, 95% CI =
statistically significant.
50.0%–58.4%) had shared a copy of the healthcare proxy
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form with their doctor. There were no racial/ethnic differ-

Results
Participant characteristics
A total of 1851 interviews were completed (American As-
sociation of Public Opinion Research Response rate 3 = 25%).
The design effect was 1.56, and the margin of sampling error
was –2.28%.
Participants who identified as non-Hispanic white were
more likely to be older, have more than a high school edu-
cation, have incomes of ‡$50,000, and report having thought
more about wishes for medical treatment than members of
other racial/ethnic groups (Table 1). Compared with non-
Hispanic whites, participants who identified as black/African
ences in either activity.
Conversation about end-of-life care wishes
Only 14.5% (95% CI = 12.6%–16.5%) of all participants
had ever had a conversation with a healthcare provider about
their end-of-life care wishes, with no differences by race/
ethnicity (Table 2, column 3). In multivariable analysis, older
age, serious health condition in the past 12 months, and
regular source of care were the only factors significantly
associated with having had an end-of-life care conversation
with a healthcare provider.
Over half (53.9%, 95% CI = 51.0%–56.8%) of all participants
reported having had a conversation with someone other than a

Table 1. Sample Characteristics by Race and Ethnicity

Black or African Non-Hispanic Non-Hispanic
Total n = 1828,a Hispanic n = 158,a American n = 112,a other n = 169,a white n = 1389,a
% (95% CI) % (95% CI) % (95% CI) % (95% CI) % (95% CI)
Age
18–49 Years 53.2 (50.3–56.0) 75.1 (67.0–83.2) 73.2 (64.5–81.9) 74.7 (67.5–81.8) 47.0 (43.6–50.4)
Gender
Female 52.2 (49.4–55.1) 52.0 (42.2–61.8) 51.7 (40.4–62.9) 37.7 (29.0–46.4) 53.8 (50.5–57.1)
Marital status
Partneredb 54.7 (51.8–57.5) 52.3 (42.5–62.0) 33.7 (23.3– 44.2) 47.7 (38.6–56.7) 57.1 (53.7–60.4)
Education
>High school 58.7 (55.7–61.7) 34.3 (26.2–42.5) 48.5 (37.5–59.4) 68.5 (59.5–77.5) 61.6 (58.2–65.1)
Household income
‡$50,000 45.7 (42.9–48.5) 19.5 (12.3–26.7) 22.9 (14.4–31.5) 30.0 (22.0–38.0) 52.5 (49.2–55.8)
Don’t know/refused 11.9 (9.9–13.8) 10.7 (4.3–17.1) 6.6 (1.9–11.4) 10.2 (4.6–15.8) 12.1 (9.9–14.4)
Regular source of healthcare
Yes 77.8 (75.3–80.3) 73.0 (64.4–81.6) 72.0 (61.6–82.3) 64.8 (56.2–73.4) 80.2 (77.4–3.0)
Serious health condition in past 12 months
Yes 27.1 (24.5–29.7) 34.8 (25.1–44.6) 30.1 (19.8–40.4) 19.0 (12.7–25.3) 26.7 (23.7–29.7)
Thought about wishes for medical treatment if difficult to function in day-to-day activities
Some or a great deal 56.7 (53.9–59.6) 42.9 (33.1–52.8) 45.0 (34.0–56.0) 46.0 (37.0–55.1) 60.5 (57.2–63.8)
Think doctors should discuss end-of-life care issues with patients
Yes 85.6 (83.4–87.7) 83.0 (74.8–91.2) 81.8 (73.7–89.9) 81.7 (74.7–88.8) 86.5 (84.1–88.9)
Reported percentages and confidence limits are weighted to represent the population of the state of Massachusetts.
a
Unweighted sample size.
b
Includes married or member of an unmarried couple.
CI, confidence interval.
 4 CLARK ET AL.

Table 2. Advance Care Planning Activities by Sample Characteristics

Ever had conversation
Ever had conversation with someone other than
with healthcare provider healthcare provider about
Named a healthcare agent about end-of-life care wishes end-of-life care wishes
%a (aOR, 95% CI) %a (aOR, 95% CI) %a (aOR, 95% CI)
Race and ethnicity
Hispanic 23.2 0.4 (0.2–0.7) 13.2 1.0 (0.5–1.9) 32.0 0.5 (0.3–0.7)
Black or African American 34.0 0.8 (0.4–1.3) 17.5 1.4 (0.7–2.9) 37.3 0.5 (0.3–0.9)
Non-Hispanic other 25.8 0.6 (0.4–0.9) 12.7 1.2 (0.7–2.2) 41.1 0.7 (0.5–1.0)
Non-Hispanic white 49.3 Reference 14.7 Reference 59.1 Reference
Age
18–49 29.5 0.4 (0.3–0.5) 8.1 0.4 (0.2–0.5) 44.9 0.6 (0.4–0.7)
‡50 Years 58.7 Reference 20.8 Reference 62.8 Reference
Gender
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Female 51.0 1.6 (1.3–2.1) 15.2 0.9 (0.7–1.3) 62.2 2.0 (1.6–2.8)
Male 37.0 Reference 13.7 Reference 44.4 Reference
Marital status
Partneredb 50.0 1.6 (1.2–2.2) 14.1 1.0 (0.7–1.5) 59.9 1.5 (1.1–1.9)
Not partnered 36.9 Reference 15.2 Reference 46.5 Reference
Education
>High school education 47.0 1.3 (0.9–1.8) 13.9 1.2 (0.8–1.8) 62.1 2.1 (1.6–2.8)
£High school education 39.3 Reference 15.0 Reference 41.3 Reference
Household income
‡$50,000 46.1 0.7 (0.4–1.1) 10.8 0.7 (0.4–1.3) 61.4 1.6 (1.0–2.4)
<$50,000 39.3 0.7 (0.4–1.1) 18.1 1.4 (0.7–2.4) 46.7 1.1 (0.7–1.8)
Don’t know/refused 53.2 Reference 15.9 Reference 49.2 Reference
Serious health condition in past 12 months
Yes 57.1 2.3 (1.7–3.0) 24.5 2.2 (1.6–3.2) 63.6 2.2 (1.6–3.0)
No 39.2 Reference 10.7 Reference 50.0 Reference
Regular source of care
No 9.9 0.6 (0.4–0.9)
Yes 15.8 Reference
a
Reported percentages are weighted to represent the population of the state of Massachusetts.
b
Includes married or member of an unmarried couple.
aOR, adjusted odds ratio.

healthcare provider about their end-of-life wishes. In multivar-
iable analyses, non-Hispanic whites were more likely than other
racial/ethnic groups to report having had such conversations
(Table 2, column 4). In addition, those who were older, female,
partnered, more highly educated, with higher incomes, and a
serious health condition in the past 12 months were more likely
to have had an end-of life care conversation with someone other
than a healthcare provider.
Conversations about goals and preferences
Among participants who reported having had a conversation
about their end-of-life care wishes with a healthcare provider,
their HCA, or anyone else, 68.9% (95% CI = 65.7%–72.2%)
stated that they had discussed their goals and preferences if
they were facing a health condition that made it hard to
function in day-to-day activities. Among those who had
such a conversation, the discussion was with a healthcare
provider for 27.5% (95% CI = 23.7%–31.2%) a HCA for
68.1% (95% CI = 63.3%–73.0%), and someone else for
47.4% (95% CI = 43.9%–50.9%) with no racial/ethnic
differences for any of the measures.
Reasons for not engaging in ACP activities
Among the 55.9% (95% CI = 53.0%–58.7%) of participants
who had not named a HCA, the most commonly endorsed
reasons for not having done so were because they were healthy
and did not need one yet, or felt that their spouse or family
members would know what they wanted (Table 3, column 2).
Two reasons differed by race/ethnicity. First, compared with
non-Hispanic whites (12.0%, 95% CI = 8.8%–15.2%), His-
panics (36.7%, 95% CI = 24.5%–48.8%), black/African
Americans (35.7%, 95% CI = 21.8%–49.6%), and non-
Hispanic others (29.8%, 95% CI = 18.9–40.6; data not shown)
were more likely to indicate that they did not have a person to
choose as an agent. Second, compared with non-Hispanic
whites (6.0%, 95% CI = 3.7%–8.3%), non-Hispanic others
were more likely to indicate that if they chose one person, it
would upset others (17.7%, 95% CI = 8.8%–26.7%; data not
shown).
More than one-third (36.9%, 95% CI = 33.1%–38.7%) of
participants had never had a conversation about end-of-life care
wishes with a healthcare provider and did not want to do so. The
most commonly endorsed reasons were because they preferred
to speak first to family members about their wishes or because
 RACIAL/ETHNIC DIFFERENCES IN ADVANCE CARE PLANNING 5

Table 3. Reasons for Not Engaging in Advance Care Planning Activities

Conversation with healthcare Conversation with someone
Reasons for not engaging Naming a healthcare provider about end-of-life other than healthcare provider about
in activity agent % (95% CI) care wishes % (95% CI) end-of-life care wishes % (95% CI)
Prefer to speak to family —a 83.1 (79.4–86.8) —
about wishes first
Am healthy and do not need 79.1 (76.0–82.2) 69.8 (65.1–74.5) 71.8 (67.7–76.0)
one yet/not sick so not
necessaryb
Spouse or family member will 65.2 (61.4–68.9) — —
know what I want
Will trust healthcare team to 40.8 (36.9–44.7) 43.0 (38.0–47.9) 43.5 (39.1–47.9)
make decision
Topic makes me — 33.9 (29.1–38.7) 32.5 (28.3–36.7)
uncomfortable
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Do not have person to choose 18.6 (15.3–21.9) — —

as an agent
If choose one person, will 8.6 (6.4–10.8) — —
upset others
Waiting for doctor to start — 20.8 (16.6–25.1) —
conversation
Person(s) I would like to — — 16.1 (12.8–19.4)
speak with don’t want to
discuss topic
Don’t have anyone to talk — — 13.6 (10.6–16.6)
with about topic
Some other reason 7.3 (5.5–9.0) 10.2 (7.5–13.0) 9.8 (7.4–12.2)
Percentages add to greater than 100 because more than one item could be endorsed.
a
—, Item not included in list of reasons.
b
Item phrased as ‘‘I am healthy and do not need one yet’’ for question about naming a healthcare agent, and ‘‘I am not sick yet, so I don’t
think it is necessary’’ for questions about conversations with healthcare provider or someone other than healthcare provider.

they were not sick and did not feel it was necessary (Table 3,
column 3). One reason differed by race/ethnicity. Compared
with non-Hispanic whites (15.3%, 95% CI = 10.7%–20.0%),
Hispanics were more likely to indicate that they were waiting
for a doctor to start the conversation (42.2%, 95% CI = 28.1%–
56.2%; data not shown).
Among the 46.1% (95% CI = 43.2%–49.0%) of participants
who had never had a conversation with someone other than
a healthcare provider about end-of-life wishes, the most com-
monly endorsed reasons were because they were not sick and
did not feel it was necessary, or they would trust their health-
care team to make decisions when needed (Table 3, column 4).
There were no racial/ethnic differences in the reasons.
Discussion
In this statewide survey of adults ‡18 years of age, racial
and ethnic minorities reported less participation in some but
not all ACP activities for which they were questioned. Dis-
parities in ACP were not the result of racial/ethnic minorities
believing that such activities were unimportant; 86% of all
participants believed that having conversations about end-of-
life care wishes were important. Nonetheless, only 44% of all
participants had named a HCA, and the odds of naming a
HCA were 40%–60% lower for participants who identified as
Hispanic or non-Hispanic other than for non-Hispanic whites
after controlling for other sample characteristics. Lower rates
of HCA may be partially explained by the fact that racial/
ethnic minorities were more likely to indicate that they did
not have a person to choose as an agent. Therefore, healthcare
providers should explore whether there are potential non-
traditional decision makers (e.g., fellow members of a reli-
gious organization)41 who might serve in this role for such
patients. Racial/ethnic minority participants were also more
likely than non-Hispanic whites to report that if they chose
one person, it would upset others, and may particularly
benefit from resources that provide guidance for explaining
why a particular individual was chosen as the HCA.
There were no differences by race/ethnicity in having had
conversations with a healthcare provider, believing that
doctors should discuss end-of-life care issues with patients, or
in wanting to have a conversation about end-of-life care
wishes with a healthcare provider if this had not been done.
Only 15% of respondents reported having had a conversation
with a healthcare provider about wishes for end-of-life care
and less than one-third had discussed what was important to
them if they were facing a health condition that made it hard
to function in day-to-day activities. Therefore, very few
Massachusetts residents have articulated their goals and
preferences to clinicians in ways that would allow for the
provision of goal-concordant care if it was needed. Given the
low rates of conversations with clinicians for all participants,
clinical care protocols should be considered for enhancing
routine and regularly updated ACP conversations between
 6 CLARK ET AL.
patients and their providers. Promising resources to aide in
this communication include Honoring Choices,42 The Con-
versation Project,43 Five Wishes,44 Caring Conversations,45
and the Serious Illness Care Program.46 Clinical care proto-
cols may be particularly helpful for Hispanics, given that they
were more likely to report not having had a conversation
about end-of-life care wishes because they were waiting for a
healthcare provider to initiate the conversation.
More than half (54%) of all participants reported having
had a conversation with someone other than a healthcare
provider about their wishes for end-of-life care. However,
similar to findings by Carr,19 the rates for such conversations
were significantly lower for racial/ethnic minorities com-
pared to non-Hispanic whites. Unfortunately, we do not have
data to explain these disparities. Nevertheless, we found no
racial/ethnic differences in reasons for not having had these
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conversations. While at least one recent population-based
survey of U.S. adults ‡50 years of age found that disparities in
ACP were not explained by sociocultural factors,47 future
studies should continue to explore topics such as culture, re-
ligion, personal health values, preferences for life-sustaining
treatments, and distrust of healthcare settings as potential
explanations for differences observed.48–52
In addition to disparities by race/ethnicity, we also ob-
served that men and individuals with fewer years of educa-
tion were less likely to have had a conversation with someone
other than a healthcare provider about end-of-life care
wishes. Lack of experience in having conversations about
values, goals, and preferences with family and friends may
make it more difficult to address these issues in a healthcare
context and may contribute to care disparities. Further ex-
ploration and confirmation of these differences by gender and
education are needed.
Taken together, our findings suggest that health literacy
may be an important factor in explaining disparities in ACP.
Low health literacy has been documented as an obstacle to
communicating values and preferences in decision mak-
ing.53–55 Therefore, while there may be some cultural issues
specific to racial and ethnic minorities such as not having
anyone to appoint as a HCA and perceptions of family dis-
appointment in the choice of agent, health literacy is a
plausible explanation for some of the findings we observed
and should be considered in any ACP aides.
There are a number of study limitations. First, the cross-
sectional study design limits our ability to make causal in-
ferences. Second, similar to other population-based studies
on similar topics,19,47,56–58 we did not verify self-reported
data. It is possible that participants may have over-reported
ACP activities. However, it is unlikely that there was dif-
ferential reporting by race/ethnicity. Third, to include all
participants in the analyses, we combined individuals who
did not identify as Hispanic, black/African American, or
white into a single group. The heterogeneity within this group
likely masked important subgroups worthy of future studies
with larger sample sizes. Similarly, we did not include indi-
viduals who were not fluent in English or Spanish and may
have unique needs related to ACP. Next, the sample was
limited to those with access to a telephone and able to com-
municate by telephone. Finally, some of the null findings may
be due to small sample sizes.
Our study highlights that racial/ethnic minorities may be
disadvantaged in the quality of care they receive if they have
a serious illness and are unable to make decisions for them-
selves because most have not talked to anyone about their
goals, values, or preferences for care. Since the main objec-
tive for ACP should be to prepare patients, clinicians, and
surrogates to make the best possible in-the-moment medical
decisions that are consistent with a patient’s goals,1,3 future
work should focus on ensuring that all adults have named a
HCA and have, at a minimum, spoken to their agent about
their goals and preferences. This will move ACP efforts away
from traditional methods of only targeting frail and older
patients to normalizing the activities as part of high-quality,
patient-centered healthcare.
Acknowledgments
The authors thank Andrew Dreyfus, Lachlan Forrow, MD,
Ellen Dipaola, JD, Ellen Goodman, Megan Mclean, JD,
MBA, and Harriet Warshaw for their comments on the survey
instrument as well as David Dutwin, PhD, Tim Pokalsky, and
Susan Sherr, PhD from SSRS, Inc. for their assistance with
data collection. The survey was conducted for the Massa-
chusetts Coalition for Serious Illness Care, made possible
with funding from the Rx Foundation and Blue Cross Blue
Shield of Massachusetts.
Author Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Melissa A. Clark, PhD
Department of Quantitative Health Sciences
University of Massachusetts Medical School
386 Plantation Street
Worcester, MA 01605
E-mail: melissa.clark@umassmed.edu