What Influences Individuals to Engage in
Advance Care Planning?
Benjamin H. Levi, MD, PhD,1,2Cheryl Dellasega, PhD, GNP,1
Megan Whitehead, BA,1and Michael J. Green, MD, MS1,3
Background: Advance care planning (ACP) is an underutilized process that involves thinking about what kind of life-prolonging
medical care one would want should the need arise, identifying a spokesperson, and then communicating these wishes.
Objective: To better understand what influences individuals to engage in ACP. Design: Three focus groups using semistructured
interactive interviews were conducted with 23 older individuals from 3 diverse populations in central Pennsylvania. Results: Four
categories of influences for engaging in ACP were identified: (1) concern for self; (2) concern for others; (3) expectations about
the impact ofACP; and (4) anecdotes, stories, and experiences. Conclusions: The motivations for undertakingACP that we have
identified offer health care providers insight into effective strategies for facilitating the process of ACP with their patients.
advance care planning, advance directive, living will, end-of-life, bioethics, decision-making, focus group
Advance care planning (ACP) is a complex process that
requires individuals to (1) think about what kind of life-
prolonging medical care (if any) they wish toreceive should the
need arise; (2) create some means for communicating these
wishes; and (3) identify a spokesperson to serve as their advo-
cate should they become unable to speak for themself.1-5
nificance of the subject, ambivalence is understandable. Studies
show that few individuals have systematically considered the rel-
evant issues and/or communicated their wishes to those who will
need to make medical decisions for them,4,6,7and only 15% to
has been done to identify reasons for low completion rates and
barriers to effective ACP.10-20In addition, much is known about
the mechanics and efficacy of ACP,2,4,6,10,15,17,18,21-27the kinds
of life-sustaining treatments patients prefer,7,28-35and what parts
of ACP matter most to them.7,16
Yet, despite this growing literature, there is a paucity of data
about what factors influence people to actually engage in
ACP.36Particular circumstances (eg, a family member’s urging
or witnessing end-of-life care gone wrong)23,37-40may prompt
individuals to engage in ACP. However there are other reasons
as well, and if health care providers are to systematically help
patients take action, a more detailed understanding of motiva-
tional influences is needed.
This article describes findings from focus group interviews
that were part of a larger research project on end-of-life deci-
sion making,41which included asking participants to think
about factors that influenced medical decisions around the end
of life. During this inquiry, it became clear that before
individuals would undertake the process of ACP, a certain set
of motivations needed to be in place. Here, we begin to explore
The study was funded by the National Institute of Nursing
Research (R21 NR008539-01) and approved by the Penn State
Hershey Medical Center Human Subjects Protection Office.
Focus group methodology was chosen because small group
interactions promote sharing of experiences, values, beliefs,
and feelings to uncover areas of consensus or dissent, as well
as their sources.42
Study participants were recruited from 3 distinct settings: (1) a
suburban senior center serving a primarily white, elderly,
1Department of Humanities, Penn State College of Medicine, Hershey,
2Department of Pediatrics, Penn State College of Medicine, Hershey,
3Department of Internal Medicine, Penn State College of Medicine, Hershey,
Benjamin H. Levi, Departments of Humanities and Pediatrics, Penn State
College of Medicine, C1743, 500 University Drive, Hershey, PA 17033.
American Journal of Hospice
& Palliative Medicine®
ª The Author(s) 2010
Reprints and permission:
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middle class population; (2) an urban senior center serving a
frail, underserved, African American population; and (3) a
breast cancer support group whose members had undergone
treatment for breast cancer. From each of these groups, individ-
uals whose health experiences would have raised ACP-related
concerns were specifically invited to participate. Consistent
with standard focus group methodology, we chose small groups
to optimize group interactions and to encourage open
Building on previous pilot work, the study team developed
questions and prompts to generate discussion on the topic of
interest (see Table 1), and then used semistructured, interactive
interviews to gather data.
Each focus group session lasted 60 to 90 minutes and was
led by an experienced nurse researcher with extensive experi-
ence in facilitating focus groups (CD). At the start of each focus
group, the facilitator explained the study’s purpose and
obtained consent from each participant. Due to the sensitive
nature of the discussion, options for follow-up with primary
care providers or crisis intervention were provided in case a
participant experienced undue emotional distress. (None did.)
Each group discussion was taped, transcribed, and then
checked for accuracy by the facilitator, before field notes were
added to the transcripts.
Two of the research team members (CD and MW) indepen-
dently reviewed each transcript and created a coding schema
that identified recurring themes related to the study question:
‘‘What influences or motivates patients to engage in advance
care planning?’’ Using an iterative process, these initial
reviewers independently coded the complete transcripts from
each focus group and, after reaching saturation on identifying
themes and assigning transcript data to them, met to compare
results. Differences in coding were reconciled by (1) discussion
about the meaning of the code until agreement was reached or
(2) creation of a new code that captured the content of the state-
ment. Once consensus was reached, a third independent coder
reviewed the codes for validity. Subsequent coding discrepan-
cies occurred in fewer than 10% of the comparisons, and all
were reconciled successfully.
Following this validation, the entire study team met again to
conceptualize categories that would capture commonly occur-
ring themes. The entire study team then met and all categories
(and theme assignments) were reconciled as per previously and
consensus reached. For reliability purposes, contrary cases (ie,
statements that did not fit any category) were identified to
strengthen the coding schema.
Twenty-three individuals participated—suburban senior center
(n ¼ 9); urban senior center (n ¼ 7); breast cancer support
group (n ¼ 7). All participants were English speaking, lived
in central Pennsylvania, and were older than 50 years. Partici-
pants’ mean age was 74 years (range 54-87), and 15 of 23
(65%) were female. Full demographic information is available
for only 14 participants: 7 of 14 (50%) African American; 9 of
14 (64%) educated through high school or less; and 4/12 (33%)
previously completed an advance directive.
As a preliminary exploration into factors that influence indi-
viduals to engage in ACP, we focused on discrete categories of
influence based on themes that emerged from the data. Had we
recognized that these influences were actually motivators that
led people to pursue ACP, we might have been able to draw
on more traditional models of motivation (ie, Miller and Roll-
nick)44in designing the study.
Four distinct categories were identified that explained partici-
pants’ reasons for engaging in ACP: (1) concern for self; (2)
concern for others; (3) expectations about the impact of
advance care planning; and (4) anecdotes, stories, and experi-
ences (see Figure 1). Nodifferences between the 3 focus groups
were identified (except as noted below regarding quality of
Concern for Self
The richest category (in terms of both the number of themes
contained and frequency) was concern for self, which com-
prised the following 5 themes:
1. Autonomy: Participants valued being in control of their
major life decisions, and this was a motivating factor for
engaging in ACP. Representative statements include
I love to drive. I don’t care where I drive, who’s with me, what-
ever ... I just love to drive. If somebody were to tell me that I
Table 1. Prompts Used in Focus Groups to Generate Discussion
Questions for Prompting Discussion
Have any of you had to make a really big decision about your
Have you ever in your lifetime had to make a decision for
Has anybody made up a living will, and what factors would you
take into consideration in doing so?
Have you had to think about advance care planning in relation to
yourself, and if so what was that like?
What do you think about kinds of situations like Terry Schiavo’s?
How do your spiritual beliefs affect what you choose?
Did you know their wishes?
Did you make decisions that were different from their wishes?
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could not ever again get behind the wheel and drive ... I would
say I don’t want [life-saving medical treatment].
If you’re going to be able to deal with life, ... be physically
able to be up and about, then you want to hang in there. That
thing [advance care planning] doesn’t come into effect until I
become totally incapacitated and I can no longer fend for
These statements reflect the priority of being in control of daily
activities, whether on a basic level (being ‘‘up and about’’) or a
self-actualizing way (‘‘I love to drive’’). Although uniquely
constituted for each person, autonomy for valued activities was
a concern for self that participants universally wished to protect
2. Meaningful existence: The desire to maintain a meaningful
existence included one’s sense of dignity and respect, as
well as one’s ‘‘place’’ in life, spiritually and developmen-
tally. Representative statements include
You live your life, you live it to the best of your ability, you do
good things now and you do it now today ... You should try to
be happy and make the most of your health. That’s my
If you’re mentally incapacitated, life is almost zilch.
I mean I’m going to do everything I can to stay healthy and
stay alive and be vibrant and useful but if that’s not what God
has planned for me then that’s OK too ... Once a person has
outlived his or her usefulness, then I think it’s time to move on.
In describing their concerns for self, subjects focused on what
makes life meaningful to them. Common threads included
being healthy, being treated with dignity and respect, making
a contribution, and being a functional part of a spiritual order.
Without these things, life ceased being worthwhile, and it was
‘‘time to move on.’’
3. Quality of life: A third theme related to the ability to enjoy
I wouldn’t want them to keep me alive with any artificial means
just to say I’m alive. I would just as soon go at that point. If
there’s medical treatment available to maintain a pretty good
quality-of-life then I say let’s do it, whatever it is.
Another felt quality of life could also determine whether to
In the end, even if you survive the treatment and everything,
what’s it going to be after that? So my chances are 50-50 to sur-
vive this, but what is ... my quality-of-life afterwards?
For many participants, ‘‘quality of life’’ depended on having an
acceptable level of health, which medical interventions could
Figure 1. Factors that motivate people to engage in advance care planning
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promote or undermine, depending on their degree of burden.
Interestingly, this was the only instance in which the frail,
underserved group differed from others—they did not mention
quality of life and several felt that ‘‘no matter what,’’ all life-
sustaining efforts would be worthwhile.
4. The likely outcome: Participants also considered how
prognosis, hope, and recovery influenced their wishes
regarding life-sustaining medical treatment.
I would definitely want to know what my chances of survival
are ..., if I were in a car wreck, am I going to be a vegetable,
am I going to be able to walk again, am I going to be in a wheel-
chair for the rest of my life? ... I know they’re not always pre-
dictable, [but] I would like to know the worst and the best-case
I don’t want to be on a machine unless it’s going to do me
If this is temporary, I’m for it. But if I knew I was never
going to come out of it, then I don’t want that.
Participants expressed that understanding the likely outcomes
of treatment was important for effective ACP. Moreover, most
individuals were pragmatic: if a medical intervention was not
likely to achieve specific goals, it was not worth pursuing.
5. Burden to self and suffering: Participants also considered
psychological and physical burdens of life-prolonging
medical interventions as a motivating factor for ACP.
I don’t want to be on there no two or three months or nothing
like that ... [J]ust let me die in peace ... I don’t want the
If you’re just laying there, don’t know nobody, don’t know
your kids, unconscious, don’t know nothing. And you’re on the
machine ... That’s terrible.
Despite highly individual definitions of ‘‘burden,’’ there was a
dimension of concern for self that related exclusively to how
much pain and suffering the patient himself/herself would be
willing to tolerate.
Concern for Others
A second category that emerged as influencing one’s decision
to engage in ACP was concern for family, friends, and others
who would be affected by the individual’s health problems.
Three themes within this category were identified.
1. Burden to others: Participants recognized that end-of-life
care often exacted a significant emotional toll and financial
burden on family, friends, and other loved ones.
I do know that it is more painful for the person trying to make
these decisions ... sometimes our family members go through
more than we do. I do want my husband when he has to make
these decisions [to be] in peace when he makes them ...
[D]irectives are just the beginning of that kind of thing. For real
mental peace it has to be a peace-negotiating thing between
I’d like to know, if you can know this, what position I’m
putting my family in. What kind of care would be required both
in terms of care and finances ...
I’d be more hesitant to do something if it was going to be
more of a disadvantage to my family than an advantage to
I don’t want on the machine. I don’t want my child to have to
go through that.
For some individuals, concerns about sparing suffering to loved
ones, particularly their children, outweighed concerns about
self. Furthermore, many thought their family should be
involved in ACP because family would be living with the
consequences of choices made.
2. Input from others: Almost all participants mentioned input
from family, loved ones, and others as important influ-
ences on their motivation to engage in ACP.
I have a tendency to think more of my family members than
myself and I will take that into consideration.
Advance care planning could also be seen as a mechanism for
acknowledging others’ strongly held views, as with 1 partici-
pant who saw ACP as a way to authorize her children’s
My kids came over to the house together and were talking
about this ... and the spokesman said, mama you all we got
and we’ll do anything it takes to keep you alive and they
agreed to it.
3. Pressure from family: For others, however, ACP was
viewed as a way to exert their independence and to actively
counter the pressure they felt from others.
They [children] can’t make [end-of-life decisions] ‘cause I have
my will made up.’’
Expectations About the Impact of Advance Care Planning
A third category captured individuals’ perceptions about the
efficacy of ACP, either to influence the end-of-life care one
received or to realize other goals such as providing helpful,
unambiguous guidance to surrogates. Diversity of opinion
about the likelihood that ACP would make any difference also
influenced participants’ inclination to engage in ACP. Two
themes were identified here.
1.Trust in the medical system: Participants expressed vary-
ing degrees of trust in the medical system, with those who
saw physicians as advocates and reliable sources of infor-
mation being more likely to seek their guidance and help
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[Y]ou can’t make an informed decision about it, an advance
directive, unless you have all the variables that go into making
that from your doctor.
In contrast, mistrust of physicians could undermine efforts to
plan care in advance:
I can’t imagine a doctor guaranteeing anything.
These very different views about participants’ ability to rely on
their doctors (for information, advice, counseling, supporting
the family, etc) affected participants’ interest in ACP, as did
their general level of skepticism about the ability of ACP to
overcome bureaucratic obstacles to having one’s wishes
2. Predicted effectiveness: Having information about the effi-
cacy of medical treatments also affected perceptions of the
value of ACP.
I would want to have shown me ... that they’ve done their
research, and they can prove to us that this drug ... [can] make
your life better.
Choices have to be made but choices can’t be made unless
you’re given guidelines and percentages and options that
These statements point to the value people place on having an
Anecdotes, Stories, and Experiences
The fourth and final category that emerged describes the influ-
ence that anecdotes, stories, and experiences have on people’s
willingness to engage in ACP. Three themes emerged within
1. Current events: Stories in the media prompted participants
to consider ACP and its relevance to their own situations.
For instance, the following statements referred to the tur-
moil facing Terri Schiavo at the time.
Like this case now down south, this lady has been on it for
years. Her husband, they know there’s no hope, so is there a
time limit that you can set? Let’s say that after three months
or after six months to pull the plug?
[T]he politicians shouldn’t be involved in that. It should
have been done between the husband and wife a long time ago.
Such current news events prompted many people to consider
taking action to prevent similar tragedies from befalling them.
2. Emotional response to caregiving: Many participants had
taken care of someone at the end of life or heard stories
from others who had struggled through the difficulty of
physically and/or emotionally supporting someone who
was fragile and dying:
We had to take major action with the head of the family because
he was not one to take charge ... We were so angry [that he]
would let [my mother] go downhill just [so she could still] take
care of him.
This emotional thing that’s involved here is unbelievable.
Participants’ detailed and often emotional stories about care-
giving were compelling, typically described as negative, and
left strong impressions. Many participants relayed that such
experiences caused them to think about what they would want
for themselves, and as such may have been the strongest moti-
vator for engaging in ACP.
3. Past experiences making decisions for others: Witnessing
the suffering of others and helping make decisions for
them also left strong and lasting impressions.
I had a friend that I had to make a decision about ... whether
to take him off of life support ... They said he could never
get any better and he would always have to be on life support.
So then we had to decide whether to take him off or not ...
Then all the kids had to come ... That is a hard decision
... my mother-in-law hung on and hung on the longest time.
My husband (her son) kept saying, mom don’t give up, keep
trying. She had to literally call on the telephone ... She called
from the hospital bed and asked if she could let go. She said I
can’t hang on anymore and he said, OK mom if you have to, it’s
OK. It was shortly after that that we lost her.
Participating in end-of-life decisions for another person affects
one’s perspective by moving ACP from a theoretical concern to
a practical undertaking.
This study identifies thought processes, values, and contextual
factors that influence individuals to engage in advance care
planning. The discussion that follows will focus on how health
care providers might operationalize our findings in their efforts
to promote ACP.
Not surprisingly, concern for self emerged as the strongest
influence for engaging in ACP. This suggests that by helping
individuals see a connection with their own interests, health
care providers can motivate them to invest time and energy
in the complex and sometimes challenging self-reflective pro-
cess that is ACP. As such, health care providers can show
patients how, as a process for clarifying and communicating
what is important to them and why, ACP can help (1) articulate
individuals’ near- and long-term goals; (2) express any rela-
tionships between their spiritual views and specific courses
of action; and (3) promote individuals’ being treated with dig-
nity and respect.
Because individuals recognize that end-of-life decisions
often have the greatest impact on others, it is important to
help patients appreciate that reflecting on and communicating
their wishes can alleviate burden to family and friends.7,45
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Our findings suggest that health care providers can reinforce
this insight by drawing on individuals’ own experiences
and observations regarding end-of-life experiences. For
these not only contribute to knowledge but also elicit strong
emotional responses that can influence people’s views
We also found that the perceived benefit of ACP was related
to participants’ views about its expected efficacy. This suggests
that to the extent that we as health care providers can increase a
person’s trust in physicians and/or the medical system, we can
promote ACP.16For despite the many factors that influence
whether a patient’s expressed wishes will prevail,6whether
ACP is considered worth engaging in depends greatly on
whether an individual thinks it will likely influence end-of-life
medical decision making.
Because this was a small, nonrandom sample of middle-aged
or older, English-speaking residents of central Pennsylvania,
generalizability may be limited.16,46,47Such restricted partic-
ipation is a natural consequence of focus group research,
which is not designed to generate statistically significant gen-
eralizable findings. However, our sample included >30%
African Americans; our methodology allowed for open-
ended, in-depth interviews to explore and clarify participants’
concerns, motivations, and underlying values48,49; and the
themes and categories identified are readily generalizable to
A second limitation common in interview-based research is
social desirability bias, with participants presenting themselves
so as to be viewed favorably by others. To minimize this, the
facilitator did not indicate approval or disapproval of input,
there were no ‘‘correct’’ answers, and group discussions were
designed with a free-flowing format that allowed for in-depth
exploration of people’s values and their origins.
A third possible limitation is that context—that is, the
realities of confronting these issues—may overdetermine
individuals’ willingness to engage in ACP.30,31The themes
identified, however, are not age- or condition-dependent, and
include factors readily applicable to diverse populations.
Although ACP is viewed positively by patients and health care
providers,50relatively little is known about how people
understand ACP and/or what motivates them to undertake this
process. Our results identify key influences and provide a
framework that health care providers can use to more
effectively engage patients in dialogue and encourage ACP.
Declaration of Conflicting Interests
The authors declared no conflicts of interest with respect to the
authorship and/or publication of this article.
The authors disclosed receipt of the following financial support for the
research and/or authorship of this article: NIH/NINR (R21 NR-
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