Journal of Cardiovascular Nursing

Vol. 33, No. 3, pp 225Y231 x Copyright B 2018 Wolters Kluwer Health, Inc. All rights reserved.

Complex Decision-Making in Heart Failure

A Systematic Review and Thematic Analysis
Aimee V. Hamel, MN, RN; Joseph E. Gaugler, PhD; Carolyn M. Porta, PhD, MPH, RN, SANE-A;
Niloufar Niakosari Hadidi, PhD, APRN, CNS-BC, FAHA
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Background: Heart failure follows a highly variable and difficult course. Patients face complex decisions, including
treatment with implantable cardiac defibrillators, mechanical circulatory support, and heart transplantation. The
course of decision-making across multiple treatments is unclear yet integral to providing informed and shared
decision-making. Recognizing commonalities across treatment decisions could help nurses and physicians to identify
opportunities to introduce discussions and support shared decision-making. Objective: The specific aims of this
review are to examine complex treatment decision-making, specifically implantable cardiac defibrillators, ventricular
assist device, and cardiac transplantation, and to recognize commonalities and key points in the decisional process.
Methods: MEDLINE, CINAHL, PsycINFO, and Web of Science were searched for English-language studies that
included qualitative findings reflecting the complexity of heart failure decision-making. Using a 3-step process,
findings were synthesized into themes and subthemes. Results: Twelve articles met criteria for inclusion.
Participants included patients, caregivers, and clinicians and included decisions to undergo and decline treatment.
Emergent themes were ‘‘processing the decision,’’ ‘‘timing and prognostication,’’ and ‘‘considering the future.’’
Subthemes described how participants received and understood information about the therapy, making and
changing a treatment decision, timing their decision and gauging health status outcomes in the context of their
decision, the influence of a life or death decision, and the future as a factor in their decisional process. Conclusions:
Commonalities were present across therapies, which involved the timing of discussions, the delivery of information,
and considerations of the future. Exploring this further could help support patient-centered care and optimize shared
decision-making interventions.
KEY WORDS: decision-making, heart assist devices, heart failure, implantable cardiac defibrillators,
qualitative research

T o live with heart failure is to live with an uncertain

and complex future.1Y4 On a daily basis, heart
failure patients make concrete choices, such as when
to take a diuretic or go to the hospital.5Y7 As the illness
Aimee V. Hamel, MN, RN
Nursing Student, School of Nursing, University of Minnesota, Twin
Cities, Minneapolis.
Joseph E. Gaugler, PhD
Professor, School of Nursing, University of Minnesota, Twin Cities,
Minneapolis.
Carolyn M. Porta, PhD, MPH, RN, SANE-A
Associate Professor, School of Nursing, University of Minnesota Y
Twin Cities.
Niloufar Niakosari Hadidi, PhD, APRN, CNS-BC, FAHA
Associate Professor, School of Nursing, University of Minnesota,
Twin Cities, Minneapolis.
The authors have no funding or conflicts of interest to disclose.
Supplemental digital content is available for this article. Direct URL citations
appear in the printed text and are provided in the HTML and PDF versions
of this article on the journal’s Web site (www.jcnjournal.com).
Correspondence
Aimee V. Hamel, PhD, MN, RN, School of Nursing, University of
Minnesota, Twin Cities, 308 Harvard St SE, Minneapolis, MN 55455
(ahamel@umn.edu).
DOI: 10.1097/JCN.0000000000000453
progresses, treatment decision-making becomes a process
of evaluating choices where the outcomes are unclear
and the ramifications of the choice may be immediate
and/or unfold over time.3 Each heart failure therapy has
its own complex care needs and outcomes.3,8 Implant-
able cardiac defibrillators (ICDs) offset the risk of sud-
den cardiac death.8,9 Patients eligible for ICD not only
face the decision to implant but must consider the ef-
fects of shocks, the end of battery life and/or device
failure and whether to replace it, and how and when to
deactivate the device at the end of life.4,8 Ventricular
assist devices (VADs)Vimplanted as a bridge to trans-
plant for patients who are eligible or as the final or
destination therapy for those not eligible for cardiac
transplantation (HTx)Vare offered to improve survival
and quality of life.10,11 However, destination therapy
and bridge to transplant patients may have to consider
replacement if there is an adverse outcome involving the
device and when and whether to deactivate at the end
of life.4,8,12 Patients eligible for HTx face the waitlist,
deciding whether to accept a donor heart, and must
consider the risks of immunosuppressant medication
and organ rejection.8

225

Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.

226 Journal of Cardiovascular Nursing x May/June 2018
In recognition of these complex decisions, shared
decision-making and patient-centered care have been
identified as approaches to support patients.8,13 Pa-
tient centered care is defined as ‘‘respectful of and re-
sponsive to individual patient preferences, needs, and
values and ensuring that patient values guide all
clinical decisions.’’14 Ideally, physicians, nurses, and
other clinicians provide the information, resources,
and counseling necessary for patients and their family
members to make decisions in keeping with their
preferences, values, and desired outcomes.8 Clinicians
should optimize the timing of new treatments and the
discussions that go along with them, as well as revisit
decisions.8,15 Additional recommendations include
starting discussions earlier in the disease trajectory
and at a slower pace.4,11 Although prognostic models
can assist in optimizing patient selection and treat-
ment timing, they are challenged by individual level
factors and outcome expectations.4 Supporting pa-
tients requires recognizing that living with heart
failure is not limited to discrete treatment options but
also includes a series of transitions within and between
therapies.4,8,16,17 Our current knowledge is predom-
inated by studies focused on specific treatments; thus,
little is known about the commonalities across com-
plex treatments.
Similar treatment decisions, such as dialysis and
transplant, are options for chronic renal failure patients.
Through a review and synthesis of qualitative literature,
Morton et al18 (2010) identified themes present across
multiple chronic renal failure treatments. Following
their example, this review aims to examine decision-
making through the course of device treatments for
patients with heart failure.
Methods
Systematic Review of Literature
A qualitative literature review and synthesis relies on
a search strategy that is both structured and open,
providing adequate definition to discover studies
applicable to study aims, while permitting the re-
searcher to make refinements as understanding of the
topic develops.19 With this in mind, Ovid MEDLINE,
CINAHL, PsycINFO, and Web of Science were searched
for studies presenting qualitative data. Studies were
included if reported in English with no limits placed
on publication date. Each database was searched using
the subject terms ‘‘heart failure,’’ ‘‘heart assist devices,’’
or ‘‘heart transplantation.’’ This was combined with
subject terms ‘‘decision-making’’ or ‘‘advanced care
planning.’’ An example search algorithm from MEDLINE
is included (Figure 1). Articles were searched without
limit to perspective (ie, patient, caregiver, clinician) or
type (clinical or patient). The resulting articles were
reviewed for complex treatments defined by ICD, VAD,
Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.
FIGURE 1. MEDLINE search strategy, run on June 2016.
and/or cardiac transplant. The resulting article titles and
abstracts were then reviewed for relevancy, followed by
a more thorough review of complete articles. Finally, all
applicable study reference lists and authors’ names were
searched for additional relevant studies.19 The first
author (A.H.) conducted all searches and evaluations
for inclusion.
To include all heart failure decision making stake-
holders, patients, family members, caregivers, and clini-
cian data were included.8 Data that discussed only
clinical decision-making were excluded because the
focus was on the decisions made by patients. Studies
including concepts other than decision-making, such as
quality of life, but that had a decision-making component
were retained to ensure pertinent data were not omit-
ted.19 Studies that met inclusion criteria were then
assessed, by the first author, using the consolidated
criteria for reporting qualitative research.20 Studies
were not excluded or ranked on the basis of this
assessment.
Thematic Synthesis
The trajectory model for qualitative research provided
an overall framework throughout data synthesis.19 This
model conceptualizes human beings as interactive with
others and objects in their environments and within a
temporal context.21 This model assists the qualitative
researcher in recognizing the biographical and tempo-
ral elements within the data.21 The model was also
used in selecting the treatments of focus. ICD, VAD,
HTx were selected to represent progression through
HF therapies. Trajectory and time concepts were con-
sidered throughout review and analysis. Synthesis of
the research findings followed the process described by
Thomas and Harden.22
NVivo23 was used for data extraction, coding, and
analysis, which was conducted solely by the first author.
Identifying data within a research article is a challenge

that is overcome by setting criteria for inclusion in the
data set.19 For this review, all texts within the reference
section of each article were considered data.22 Participant
quotes and researcher statements about participant data
were also incorporated into the analysis. Finally, because
data are not only confined to the results section, applicable
data outside the results sections were analyzed.19
The first step in the synthesis was line-by-line coding
of the data.22 In the early stages, codes were developed
from the texts. Subsequently, data were added to the
previously identified codes, or new codes were added
as needed. This continued until at least 1 code was
attached to each statement, although many units of
data fit multiple codes. The resulting codes were sub-
sequently reviewed to capture the essence of related
codes and reduce them to workable descriptive themes.22
Results
Systematic and Critical Review Results
The initial search produced 438 citations (Figure 2), of
which 409 studies were excluded upon review of title
FIGURE 2. Search and article review results. Adapted from Moher, Liberati, Tetzlaff, Altman, and The PRISMA Group (2009).24
Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.
Complex Decision-Making in Heart Failure 227
and abstract. Reasons for exclusion were as follows:
interventional studies (n = 7), non-heart failure studies
(n = 185), clinical decision-making (n = 40), quantitative
study (n = 17), literature review (n = 68), editorial (n =
76), and duplicates (n = 16). Twenty-nine studies
remained for full-text review. Of these 19 were
eliminated because they were an evaluation of an
intervention (n = 1), did not include the population or
subject of interest (n = 16), or were exclusively
quantitative (n = 2). Two additional studies were
uncovered from the author and reference list
searches, resulting in 12 studies included in this review.
Quality varied between and within studies as assessed
by the consolidated criteria for reporting qualitative
research (see Table, Supplemental Digital Content 1,
http://links.lww.com/JCN/A46). Only 1 study11 discussed
the relationship between researchers and participants
or if there were others present during the interviews.25
Few studies described the researchers9,25Y28 or their
qualifications for conducting the study.9,25,27,29,30
All but 1 study31 reported their data recording methods;
only 2 studies discussed field notes.11,27 Descriptions
228 Journal of Cardiovascular Nursing x May/June 2018
of study design were strongest, with all studies pro-
viding sample descriptions and sampling methods.
Findings of all studies were consistent with the data as
they were presented, and major themes were easily
identified.
The studies reflected the views of 313 decision-
making stakeholders, including patients (n = 173),
caregivers (n = 84), and clinicians (n = 56) (see Table,
Supplemental Digital Content 2, http://links.lww.com/
JCN/A47). Patients and their caregivers participated in
the following decisions: post-ICD refusal (n = 18), post-
ICD implantation (n = 45), pre-VAD decision (n = 15),
post-VAD refusal (n = 29), including patients who
eventually agreed to VAD implantation (n = 10), post-
VAD implantation (n = 68), including VAD as
destination therapy (n = 53), and bridge to
transplantation (n = 18).
Synthesis Results
Three themes emerged from the synthesis of the
studies: processing the decision, timing and prognosti-
cation, and considering the future. Subthemes within
‘‘processing the decision’’ were transmission of infor-
mation and changing decision. Timing of the decisions
and judging health status were factors that emerged
within the ‘‘timing and prognostication’’ theme. Under
the theme ‘‘considering the future’’ were subthemes life
or death and looking forward. Each study within a
theme and subtheme was enumerated, and represen-
tative quotes were selected (Table).
Processing the Decision
The theme processing the decision encompasses the time
of initial presentation of the device therapy. Participants
recognized this as a discrete period,27 described as a
‘‘complicated decision context.’’30 Whereas most study
participants did not change their treatment decisions,
some did describe doing so during this time. This was a
time wherein clinicians discussed concern that they
would overly influence patient decisions or complicate
the process by introducing difficult discussions.
Transmission of information. When beginning a
discussion about ICD, VAD, or cardiac transplantation
clinicians must impart information to patients and their
family. Some participants felt this time was overwhelm-
ing and they could not process what they were being told.
Information was lost in attempting to exchange it
between people during multiple encounters. ‘‘The doctor
would say stuff and I would hear what I thought the
doctor said. But me hearing it and then trying to tell her
[my wife]VI’m telling her what I thought I heard. So, by
the time it gets back around to the doctor, he’s confused
and we’re all confused.’’32
Others discussed avoiding information that was
fearful or they felt would sway their decision. For their
Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.
part, clinicians tried to find a balance between impart-
ing key information without adding to the difficulties
for patients and caregivers. Although understand-
ing that education is a key element to shared decision-
making and informed consent, clinicians were cautious
about overemphasizing the risks and further compli-
cating the decision ‘‘when you are putting them in you
are not having an end of life conversationI. You are
having a prolongation of life conversation. I don’t
think there is any reason I can see to go thereI.’’9
Changing decisions. The subtheme ‘‘changing de-
cisions’’ illustrates the dynamism that factors in
complex decision-making. Some patients and care-
givers described making an immediate decision that
changed as they learned more or grew to understand
the severity of their illness. There were also instances
in which patients experienced stability in their
progression of their HF such that their treatment of
choice could be delayed. For others, illness worsened
such that the initial decision could not be carried out,
‘‘Iwhen we first started outIwe had hopes of a
transplantIbut once the lung function was done, and
the kidneysIthere was pretty much nothing. There
was no hope other than the LVAD.’’30
Timing and Prognostication
The theme ‘‘timing and prognostication’’ described
the influence of time and how attempts to make pre-
dictions factored into the decisional process.
Timing encompassed judgments about when to
carry out a decision and the pace of the process. It
also included the influence of time on participant
feelings about the treatment decision. Ideally, the
decisions move at a slow pace, allowing careful con-
sideration of the treatment options.11 However, in
practice the process may need to be sped up or truncated
because of disease progression. ‘‘He had gotten really
sickIand they were like ‘This needs to be done like
this week.’ Like ‘If you are going to choose to do it, he
needs to do it like right now.’’’30
Prognostication defined patient, caregiver, and
clinician attempts to judge the patient’s health status
and possible treatment outcomes in terms of process-
ing the decision and framing expectations for the
future. One study described patients having difficul-
ty understanding being ill enough to consider VAD but
not to proceed with implantation.25 Participants de-
scribed assessing their health status and realizing
that the treatment was needed.9,28,30,32Y34 Others
judged that they could defer, ‘‘No way, I feel good,
I’m not going to die. I wasn’t in any pain or anything.’’31
Considering the Future
Across therapies and among all decisional stakeholders,
the future was frequently considered and discussed.
 Complex Decision-Making in Heart Failure 229

TABLE Results of Thematic Synthesis and Representational Quotes

Themes Representational Quotes Studies That Included Theme
Processing the decision
Transmission of information ‘‘But that’s what I mean it wasVI mean they can explain Refs. 9,11,25,26,28,30Y34
and explain but now of course we understand everything
but at that point-and mentally you’reVit’s very difficult,
I just can’t explain it. It was a very, very difficult time, very
stressful time.’’ -female VAD caregiver33
‘‘I think my biggest concern is if I can convey the risks to them
too strongly, that they will choose or make an unwise
decision and not proceed with therapy. Some might get
overwhelmed ‘cause you tell them so many risks all at
onceIall they may take away is just the risks andIthat’s
what I’m afraid of sometimes, that’s the only thing they
hear.’’ -ICD clinician9
Changing decisions ‘‘I talked to my family after [declining]. And they 100% told me to Refs. 9, and 30Y32
get it. And so I’m just going to do it.’’ -male VAD patient31
‘‘Ieven though it’s good for you and you know it’s going to be
good for you, it just made me feel kind of lost and alone you
know. Like I just went through some trials with it.’’
-male ICD patient9
Timing and prognostication
Timing ‘‘He had gotten really sickIand they were like ‘This needs to be Refs. 9, and 30Y32
done like this week.’ Like ‘If you are going to choose to do it,
he needs to do it like right now.’ -female DT-VAD spouse30
‘‘Ideally, the decision process is slowed down at all costs.’’
-VAD coordinator11
Prognostication ‘‘If the conversation were differentII would probably be a lot Refs. 9,28,30, and 32Y34
closer [to accepting the device], but as soon as I hear
numbers, you know, this percentage and this
percentageIpeople in those percentages haven’t lived my
lifeIthat’s a turn off.’’ -man who declined ICD9
‘‘Iit [heart failure] was killing him. He had no strength. He
had no quality of life. He was just existing.’’ -female
DT-VAD caregiver30
Considering the future
Life or death ‘‘I have received twelve shocks from it. If I hadn’t had the ICD, Refs. 9,26Y32 and 34
I wouldn’t have experienced the things that I have. It’s as
simple as that.’’ -female ICD patient26
‘‘I am either going to die or we are going to put in a pump. It
was a very easy decision based on where I was because
there was no other alternative.’’ -LVAD patient32
Looking forward ‘‘As long as I see my kids grow up, go to college, have kids Refs. 9,26Y28,30Y32 and 34
and get married, just the basic life experiences with them,
I’m happy.’’ -LVAD patient32
‘‘Unless somebody shoots me and I’m bleeding to deathIand
nobody is coming to helpIother than that, I don’t intend to
turn it off at any time.’’28

Abbreviations: DT, destination therapy; ICD, implantable cardiac defibrillator; LVAD, left ventricular assist device.

Life or death describes patient, caregiver, and clinician
views of the decision as a binary one that did not
require deliberation. For some, this made the decision
simple and clear. ‘‘There is no decision when they give
you the alternative. I am not ready to die.’’34 Although
most made the decision to prolong life, some did
accept death as an option over further treatment
when considering their future, ‘‘Imy life is sitting
here and watching TVIthat’s why I had the DNR in
place and that’s why I didn’t have the defibrillator put
inI(Later in the interview)Ito take a defibrillator
would just lengthen the process that I don’t really
want lengthened.’’9
Looking forward. Within the subtheme ‘‘looking
forward,’’ participants discussed the treatment in terms
of its impact on their quality of life and outcome
expectations. Experiencing life and being there for
family were repeatedly discussed as things to look
forward to.28,30,32 Participants also considered the life
expectancy of the devices, hoped to maintain stability,
and anticipated decisions that may come later in the
course of treatment.27,30 Others described the effects of

Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.

230 Journal of Cardiovascular Nursing x May/June 2018
What’s New and Important
h This synthesis of the literature revealed commonalities
across HF treatments. Recognizing commonalities
and key points could help nurses and other HF
clinicians optimize shared decision-making and
patient-centered care.
h Time was a factor in the presentation of the treatment,
decisional timing, and attempts at prognostication.
Patient made their decisions based on hopes for the
future and described choosing between life and death.
h This study is an early step in exploring longitudinal
decisional changes and influences.
one decision on another, ‘‘I received the LVAD as a
bridge to transplant. I am medically stable and that is
good, but now I am not moving on the transplant list,
the LVAD is really a double-edge sword because I feel
like it is keeping me from getting a heart.’’34
Discussion
Although the body of literature on heart failure decision-
making is growing, there is still much to be understood
about this population’s decisional process. Patients
often undergo multiple treatments as their disease ad-
vances. Patients who receive an ICD may later be im-
planted with a VAD and may in turn receive a donor
heart. The decisional process across multiple therapies
is currently underrepresented in the literature. The
study authors sought to uncover commonalities in the
decisional process across therapies through synthesis
of findings from studies that were focused on specific
treatments.
Common concerns and factors were present across
therapies. Patients, caregivers, and clinicians considered
the possible outcomes of decisions. They evaluated
present health status to make prognostications about
what the treatment may mean for them in the future.
Time was a factor in determining who made the decision
and how the decision was made, as well as when and
whether decisions changed.31,33 In addition, participants
in several of the studies described a dichotomy between
quick and reflective decisional processes.29,31,34 These
commonalities could represent key moments in which
to engage patients in discussions about possible treat-
ment options, as well as points at which patients and
their family members need additional support.
Across the therapies, participants described the initial
decisional period as stressful and overwhelming, impacting
patient and caregiver understanding of the treatments.
This was further influenced by the health of the patient
at the time of presentation. This suggests that improve-
ments are needed to the support we are currently provid-
ing patients when first introducing a therapy.
We found no qualitative research specific to cardiac
transplant decision-making. Although the studies included
Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.
in the review presented the views of patients planning
to move from VAD to transplant, the views of HTx
patients who had made other decisions were absent.
This presents both an ethical dilemma and a significant
gap in the literature. Just as some defibrillator and
VAD patients acknowledged changing their decisions,
likely those waiting for a donor heart reconsider their
choice as well. Some patients felt that their decision,
whether they accepted or rejected VAD therapy,
hindered their likelihood to receive a donor heart.31,34
Further research is needed to understand the deci-
sional process between bridge to transplant and receiv-
ing a donor heart. For example, there may be times such
as hospitalization, or prolonged waitlist time, when
supporting and reviewing decisions in a systematic
manner would be beneficial to patients.
There are a number of areas of weakness in this
study. A common critique of qualitative synthesis is that
the data are not in their raw state but rather come from
data selected and interpreted in support of other
researchers’ aims.19 This review used established steps
to offset this concern19,22; however, currently, there are
a limited number of research in this area. This resulted
in a number of authors represented multiple times in
the data set, which likely led to repetitive findings and
reduced the robustness of the data. In addition, the
data collection, analysis, and synthesis were conducted
solely by the first author. A team approach would have
offset the risk of bias and possibly led to a more robust
interpretation of the data.
Beyond treatments, patients also make decisions
about self-care, end-of-life choices, and care planning.
In addition, patients with devices, or their caregivers,
may also have to decide whether to replace them or turn
them off. Synthesizing findings requires studies included
to be similar enough to allow for integration.19,22 For
this reason, the focus of this study was narrowed to
the decision to start advanced therapies. However, it
must be acknowledged that, through doing this, a
large part of the trajectory remains unexplored.
Conclusion
This synthesis revealed themes common across heart
failure treatments that represent complex decisions.
There are patients who deliberate and those who do
not, others who remain with their initial decision, and
those who change their minds. The initial decisional
phase is one in which patients are considering the
immediate information being given, while attempting
to judge their health status and future goals. As
patients move from the treatment initiation, they still
reflect on their decision and consider the future. One
suggestion for improvement of the decisional process is
that clinicians begin to consider a more longitudinal,
broader process. Future research should include the

perspectives of patients who have made multiple HF
treatment decisions or declined treatments. This re-
view illustrates the need for prospective, longitudinal
studies of decision-makers to optimize shared decision-
making and patient-centered care.
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