Brown 2006

QUALITATIVE
Brown et al. / WAITING

HEALTH FOR
RESEARCH
ALIVER/TRANSPLANT ARTICLE
January 2006
Waiting for a Liver Transplant
Jill Brown
James H. Sorrell
Jason McClaren
John W. Creswell
The waiting period for liver transplantation is a difficult time fraught with uncertainty and
associated with a high rate of morbidity and mortality. To understand better what it means
for a transplant patient to wait, the authors explore in this phenomenological study the
meaning that people with liver failure ascribe to the experience of waiting for a transplant.
They conducted 9 interviews using phenomenological methods of inquiry as a guide for
analysis. Eight core themes emerged from 146 significant statements and corresponding
meaning units. The experience of waiting includes transformations, doctors, teams and
trust, elation to despair, loss, questioning the process, searching, coping, and the paradox of
time. The essence of the experience is discussed in light of the theory of chronic illness as a
disruption of biographical narrative. The authors highlight implications for the transplant
teams and other health care providers.
Keywords: qualitative; chronic illness; end stage liver disease; quality of life; coping time
perspective
T his study arose out of being ill at ease. One of the authors (J.S.) is a psychiatrist
responsible for the assessment and selection of all patients with end-stage liver
disease (ESLD) who present as candidates for liver transplantation at a large mid-
western transplant center. Out of the silences and repetitions of their time on the
waiting list, an occasional voice was heard. It was at times an articulate plea for rec-
ognition of the uniqueness of their experience; more frequently, it was the moaning
of a soul that we clinically recognize as depression. J.S. offered reassurance and
medication but began to wonder about much more that was left unsaid and unex-
plored. In truth, this study was initiated by a sense of complicity in their suffering.
For a large group of these patients, who acquired their liver disease through illicit
drug use or alcohol misuse, this author made the determination that a 6-month
period of documented abstinence and participation in substance abuse treatment
was required prior to their being placed on the waiting list. Thus, for many who pre-
sented to his care, struggling with the uncertainties and vagaries of waiting, he and
the transplant team were, in fact, responsible for the very structure in which their
suffering was embedded.
In the United States, there were more than 17,000 candidates awaiting liver
transplantation at the end of 2004 (United Network for Organ Sharing [UNOS],
QUALITATIVE HEALTH RESEARCH, Vol. 16 No. 1, January 2006 119-136

DOI: 10.1177/1049732305284011
© 2006 Sage Publications
119
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120 QUALITATIVE HEALTH RESEARCH / January 2006
2005). That same year, more than 1,800 people died awaiting transplantation, and
nearly 500 more became too ill to profit from transplantation and were removed
from the list (UNOS, 2005). For the patients listed for transplantation in 2001, the
average wait was 210 to 1,244 days, depending on blood type.
The process of liver transplantation is complex and not without risk; however,
with increasing survival rates, concern for the suffering of these patients has shifted
to worries regarding the quality of life and the goal of restoration of function. What
happens in the waiting process might contribute to the comorbidity of illness and
poorer quality of life.
The very possibility of waiting for a liver transplantation is a consequence of
innovations in surgical technique and medical science, which make transplantation
surgery highly successful, combined with the scarcity of organ donation, which
limits its availability to those with ESLD. ESLD is the result of advanced liver dam-
age in which the liver can no longer perform its functions adequately. Cirrhosis rep-
resents the end stage of many chronic liver diseases. Cirrhosis is characterized by
fibrosis and the conversion of normal liver architecture into structurally abnormal
nodules, which leads to portal hypertension and its resulting complications, includ-
ing gastrointestinal bleeding. Common symptoms of ESLD include fatigue, muscle
weakness, poor appetite, nausea, weight loss, itching, jaundice, and abdominal
swelling caused by fluid retention. It can also lead to encephalopathy with mental
confusion, memory loss, and eventual coma. The etiology of ESLD is varied. Pri-
mary diagnoses might include hepatitis C, alcoholism, and cholestatic liver disease,
such as primary biliary cirrhosis. During the course of the past two decades, liver
transplantation has emerged as the treatment of choice for ESLD. Liver disease
accounted for more than 27,000 deaths in the United States alone in 2003 (Centers
for Disease Control and Prevention [CDC], 2004). Between 1988 and 2003, 61,892
transplants were performed in the United States. In 2004, 5,323 were performed.
In light of a shortage of organs, UNOS has made recent changes to develop a
system for prioritizing patients waiting for liver transplants based on statistical for-
mulas that predict who is most likely to die soon from liver disease. The Model for
End-Stage Liver Disease (MELD) is a numerical scale ranging from 6 (less ill) to 40
(gravely ill); the higher the score is, the higher the priority for transplantation. The
UNOS transplant system is thought to be more rational than earlier methods of
selection to allow for equality between transplant centers.
The journey to transplant is a complex process that includes the following mile-
stones. After an extensive evaluation by surgeons, hepatologists, psychiatrists,
social workers, nutritionists, and so on, patients are selected to be placed on the
waiting list (about a third evaluated are listed), given a pager, and told to be at the
medical center ready for transplantation no more than 4 hours from the time they
are called. They are then prioritized by the severity of illness (as measured by the
MELD). The length of the wait is subsequently determined by the match between
one’s MELD, availability of organ, and blood type. The complexities and nuances of
this experience demand closer examination, and this examination is the ultimate
intent of the authors. Thus, the purpose of our phenomenological study was to
explore what meaning people with liver failure ascribe to the experience of waiting
for a transplant at a major midwestern transplant center.
Brown et al. / WAITING FOR A LIVER TRANSPLANT 121
LITERATURE REVIEW
Research into the process of liver transplantation has focused on pre- and
posttransplant quality of life typically using quantitative measures (Blanch et al.,
2004; Caccamo et al., 2001; Karam et al., 2003). A small number of researchers, how-
ever, have used qualitative methods to understand the experience of transplanta-
tion. For example, a grounded theory study of the transformative experience of
liver transplantation revealed a five-stage trajectory that included receiving the
transplant, improving in hospital, improving at home, feeling well again, and recip-
rocating. The major emphasis was placed on the experience posttransplant (Wain-
wright, 1995). In addition to grounded theory, several studies using phenomenol-
ogy have been conducted. Forsberg, Backman, and Moller (2000) studied the
subjective meaning of having a liver transplant using a sample of 12 patients, 1 year
after transplantation. Patients spoke of facing the inevitable, recapturing the body,
emotional chaos, and honoring the donor, among other themes, as important
aspects of their experience. Patients come to view themselves in light of laboratory
results, often neglecting and feeling neglected by other parts of their experience.
The time spent waiting has been examined retrospectively. In a series of three
interviews 6 weeks, 6 months, and 12 months posttransplant, patients were asked to
think retrospectively about their pretransplant experience as well as life during and
after transplant. Common themes of quality of life and health care, economic fac-
tors, social support factors, and psychological factors emerged from analysis (Jones
& Egan, 2000). In another study, the role of the transplant team emerged as a unique
factor. The relationship between the transplant team and the patient is disrupted
with a long wait and can contribute to negative outcomes (Levenson & Olbrisch,
1987). Physicians and nurses begin to avoid contact with the candidate and the fam-
ily during long waits. In addition, feelings of competition and misconceptions
about transplant priority begin to emerge in the wait. Finally, patients retrospec-
tively spoke of the experience of waiting as that of simultaneously facing life and
death and describe the paradox that liver transplant patients face as a life-death
paradox (Lumby, 1997).
Although all these studies highlight the experience of patients dealing with
transplantation, no studies have looked specifically at the waiting process for liver
transplantation, a difficult period that is fraught with uncertainty and is associated
with high rates of morbidity and mortality (Streisand et al., 1999). Given the persis-
tence of both depression and cognitive impairments initially uncovered at the time
of the transplant evaluation, it only stands to reason that these patients would be
uniquely vulnerable to suffering while awaiting transplantation. By exploring what
it means to be on a wait list, we might better understand the complexity of issues
facing patients. With this understanding, transplant teams (surgeons,
hepatologists, psychiatrists, nurses, etc.) can better isolate variables pretransplant
that might lead to poor outcomes posttransplant, with the goal of lessening the
patient’s suffering. In our study, we focus on the meanings associated with the wait-
ing process. We asked “How is waiting experienced?” from which we developed a
description of the essence of the experience using phenomenological research
methods.
THE PHENOMENOLOGICAL APPROACH
According to Frankl (1997), the construction of meaning is a central human activity.

An advocate of the phenomenological approach, he believed that preconceived pat-
terns of explanation distort human existence and reduce human experience to sub-
human dimensions. He advocated something better: a phenomenological approach
that pushed forward, in rigorous fashion, the search for meaning in people’s lives
that could not be reduced to other phenomena. Inspired by Frankl, we have cho-
sen a phenomenological approach to search for the meaning of waiting for a liver
transplant.
Contemporary phenomenology is based on the philosophy of Husserl (1960).
When we see a tree, Husserl insisted, we do not see a tree image or a packet of sense-
data that we make into a tree (as empiricists insist); we see the tree itself. Moustakas
(1994) described it as “if the only being that can be absolute is the being that can be
absolutely given, and the only being that can be absolutely given is the phenomenal
being, then only phenomenal being can be absolute being” (p. 41). Transcendental
phenomenology contains four basic assumptions (Creswell, 1998). First, knowl-
edge begins with a description of the experience. Phenomenology is a return to the
traditional task of philosophy; a search for wisdom. Second, phenomenology
involves an attempt to suspend all judgments about what is real until they are based
in more certainty. This process is called epoche. Third, the intentionality of con-
sciousness posits that the reality of an object is intimately linked to one’s conscious-
ness of it and the meaning if found within. Fourth, phenomenology calls for the
refusal of subject-object dichotomy. Reality is only in the meaning of the experience
of the individual.
In phenomenological research, the structure of consciousness of lived experi-
ences is explored with the goal of giving the reader an accurate understanding of the
essential, invariant structure (or essence) of an experience (Moustakas, 1994). Prior
research on chronic illness that involved the use of the phenomenological approach
supports the idea that for patients, an illness is a lived experience not easily reduced
to a list of variables or a theory (Anderson & Spencer, 2002; Cheung & Hocking,
2004; Ironside et al., 2003). Living with ESLD and waiting for a transplant become
experiences in and of themselves as the illness progresses and outcomes are not
known. It is with this understanding that we chose phenomenology as the tradition
of inquiry.
METHOD
Nine interviews were conducted with 6 patients waiting for a liver transplant at a
large midwestern university medical center. We used maximum variation sampling
to select participants who have been on the wait list for varying amounts of time,
retrieving names and phone numbers of candidates for transplant through the
OTTR (Organ Transplant Tracking Record). The first author contacted potential
participants by telephone and asked them if they would be interested in participat-
ing. If they agreed, a time and place was arranged for the interviews. The first
author is in no way connected to the clinical care of these patients or affiliated with
the medical center. This was done to ensure that participants would not feel coerced
into participation. Two women and 4 men, all White, ranging in age from 46 to 63
years, participated in the study. Two had a primary diagnosis of ESLD secondary to
hepatitis C infection and alcohol misuse, 2 had ESLD secondary to hepatitis C, 1 had
ESLD secondary to alcohol, and 1 had a history of ESLD without an identified etiol-
ogy. All participants had high school degrees, 2 had master’s degrees, 1 a bachelor’s
degree, and 1 participant had 2 years of college. The length of time on the list ranged
from 4 months to 8 years.
Open-ended interviews were conducted with the participants, lasting between
1 and 2½ hours. Follow-up interviews were conducted with 3 of the participants.
Interviews were conducted at a site chosen by the participant. Seven of the 9 inter-
views were conducted at the participants’ home between the months of October
and November 2004. One participant was interviewed at the hospital. We obtained
internal review board approval through the University of Nebraska Medical Center
(IRB 365-04-EX). The interviewers (J.B., J.M.) are not clinically connected to any of
the participants. As with gaining initial consent, we did this to ensure that partici-
pants felt comfortable sharing their experiences and not coerced by feeling this was
part of the evaluation process. Interviews began by our asking participants to “help
us to understand your unique experiences and become co-investigators with us.”
The following questions represent the interview protocol: Please tell me a bit about
yourself. Could you tell me how long you have been on the wait list? What dimen-
sions, incidents, and people intimately connected with waiting for a transplant
stand out for you? What has the experience been like since you were placed on the
wait list? How has it affected you? What changes do you associate with the experi-
ence? What do you spend most of your time thinking about lately? What feelings
were generated by being on the wait list? Has your perspective of time changed
since you have been on the wait list? What would be a metaphor or saying that rep-
resents your experience of waiting for a transplant? Have you shared all that you
think is relevant to the experience of waiting?
Interviews were audiotaped and transcribed verbatim by the authors. Data
were put into a qualitative software data analysis program, ATLAS.ti. We ensured
anonymity by changing the names of the participants and any information that
might directly identify them in the final research article.
The data analysis followed the procedures of phenomenology as described by
Moustakas (1994). First, we read the transcripts for overall understanding and
listed every expression relevant to the experience in the process of horizonalization.
This resulted in a list of 146 significant statements that pertained directly to the
experience. Next, we found the invariant constituents by reducing and eliminating
overlapping significant statements. Then, we created meaning units from the
invariant structures, a process of formulating meaning from the significant state-
ments of the participants. In Table 1, we have shown examples of invariant struc-
tures and the corresponding meaning units. Our goal in these initial steps of the
analysis was not to not disrupt the original meaning but to discern the meaning by
reflecting on the verbatim statements.
Next, we clustered and created themes from the meaning units. We verified the
themes for their essential or incidental nature through a process of free imaginative
variation, whereby we asked the question, Is the phenomenon still the same if we
imaginatively delete or change this theme? (Van Manen, 1990). One theme (social
support) was deleted through this process. In Table 2, we show examples of three of
the eight themes and the meaning units from which they were derived. We then
TABLE 1: Examples of Invariant Structures and Their Corresponding Meaning Units
Invariant Structure Meaning Unit
I miss working so much it upsets me The inability to work is experienced as a feeling of

loss
I feel just incredibly blessed Patients feel gratitude and privilege of being
listed
The only time I feel like I’m waiting is the time I Waiting is felt when interferes with goals
feel they are intruding on my life
I know that a transplant opens up a whole other Questioning rationality of surgery
group of problems . . .
I can’t get into the negative—I don’t like it—I Resisting negative outlook
don’t like personally being there and sometimes
it’s a lot of work
In the beginning, it was a good feeling, like Initial excitement/elation with being listed
something is going to finally happen
When frustrated, I can’t do anything—when Frustration from waiting renders people impotent
frustrated, I can’t control going down and out of control
So now I found out, yes, I can be human just like Illness makes one face own mortality
the rest of us
And I have a disease, but it’s not me. It’s not my Refusal to see illness as part of identity
identity
But it really gave me an insight into—I needed Illness/waiting brings about personal change
to pull all of these pieces together of who I was
I just went into shock . . . but cried all night feel- Death is only option
ing that nothing but dying was left for me
The depression that hits you sometimes can be Depression is devastating
devastating
I will wait as long as it takes Willingness to wait
So I had to jump through a lot of hoops Made to comply without good reason
I don’t feel like I’m waiting Denial of waiting
For myself, the waiting experience is something Waiting is personal
that is mine
What happens as far as the illness and things Waiting becomes job
related to that is just part of my routine—
my job
I pretty much gave up Lost will to live
One feeling I have is “wimpy, wimpy liver, why Questioning one’s bad fortune
me?”
Waiting is like, “maybe it will never happen” Uncertainty if transplant will ever happen
It’s a lot of work to keep a social relationship Waiting affects relationships
going
So it is a tremendous relief to get over that hurdle Initial worry is replaced by relief; downplay
and get on the list. And now it’s just waiting. waiting
It’s terribly boring Waiting is boring
I function with a degree of denial Denial
Feels like they forgot you and nothing is going Forgotten
to be done
composed a composite textural and structural description of the phenomena.

Finally, we developed a composite description of the essence of the experience that
represents the group as a whole.
Three methods of verification were used to demonstrate the validity of our
analysis. These strategies reflect the common verification methods used in
TABLE 2: Sample of Three Emerging Themes and Corresponding Meaning Units
Theme Meaning Units
Loss The inability to work is experienced as a feeling of loss

The rules of the waiting list interfere with other life goals
The feeling of waiting is worse when it interferes with goals
There is a lack of control over one’s own life
Awareness of disease renders one undependable
Waiting negatively affects relationships
Loss of vitality disrupts work life
Illness limits things one wants and desires
Waiting holds people from dreams
Disrupts natural process of making decisions about life
Transformations There is a change in perspective through the transformative experience of
illness
New self-identity during waiting
Illness makes one face own mortality
New understanding of what is sacred
Refusal to see illness as part of identity
Defiant of waiting
Brought about personal change
Resistant to letting the experience change you
Searching Blame attributed to one’s self
Patients want justice and fairness in the transplant process
Waiting is a personal experience
Patients search for meaning in transplant process
There is an acceptance of one’s fate
Rationalization of the illness; unknown purpose
Waiting is a personal experience
Questioning one’s bad fortune
Positive outlook equals better health
Guessed doctors’ intentions
Deserves transplant because has been a good patient
Life is too full to die
MELD is final determining factor
Omen
Search for meaning in process
List is irrelevant
qualitative research (Creswell, 2003). First, we achieved verification by doing a

thorough literature search, following closely the phenomenological method, brack-
eting our experiences with the phenomenon, identifying negative cases, and keep-
ing field notes (Meadows & Morse, 2001). Second, we used member checking, dur-
ing which the final product was taken back to two of the participants to check for
accuracy (Creswell, 2003). Finally, colleagues at the University of Nebraska Office
of Qualitative and Mixed Method Research conducted a peer review of the entire
process. Each stage of the process was critiqued through this review.
FINDINGS
From the significant statements and meaning units, we constructed a set of themes,
a structural and textural description, and an essence. The structure of the experience
can be understood as “what happened” surrounding the central experience of wait-

ing for a liver transplant. Using imaginative variation, we then constructed the tex-
tural description of the experience, namely, how waiting for a liver is experienced
(Moustakas, 1994). The following eight themes emerged: transformation, doctors,
teams and trust, elation to despair, loss, questioning the process, searching, coping,
and the paradox of time.
Transformation
The transformative experience of the acute episodes many people went through to
find out they had ESLD is undeniable.
I had for me what was a deeply religious, religious is the wrong word, deeply spiri-
tual thing happen to me before I ever got to the hospital, in the process of actually
dying before anybody got to me. I feel very, very lucky because God gave me a
chance to set things right. . . . So anything that happens now . . . if I go tomorrow, it’s
really okay.
Facing death, participants enter the waiting process tempered with this new
perspective. People spoke about taking the time to appreciate things, being sur-
prised that they could now “step back and be in awe of something so simple.” Ill-
ness brought about personal change as well as changes in roles and relationships.
One participant said, “It really gave me insight into—I needed to pull all these
pieces together of who I was. I think that in a way it changes you because you live for
today—don’t put things off.”
Change was not, however, always viewed as moving toward an enlightened
awareness of the self. People also described a new self emerging since being on the
wait list, one that is different from the former self that people remember. One partic-
ipant recalled a day when he needed bread and dog food and finally got to the store
at 3:00 in the morning. Reflecting on the story, he said, “That’s not who I am. That’s
not who I have been and who I know.” The sacredness of life is both felt and paro-
died in people’s transformative experiences of waiting. “There is nothing sacred,
anymore, I’ve learned that.” Participants also spoke of resisting the possible
changes brought about by the experience of waiting: “I am a rock, you are not going
to change me. No one is going to change me.”
A person’s view of his or her mortality is transformed. Patients acknowledged
for the first time that they were “not superman, so I found out that I can be human
just like the rest of us.” The waiting has made people come face to face with earlier
feelings of immortality, forcing a change in perspective and accountability to the
choices they made: “I was always so—see, I never fell down, never stumbled; never
mumbled. I was just a rock. So I thought I was good enough to get away with this
forever.” With these new and changed perspectives, participants fostered relation-
ships with their physicians and caregivers.
Doctors, Teams, and Trust

Soon, patients were immersed in the complexities of their medical management.
Trust and faith in the transplant team were judged to be a positive element for “sur-
viving” on the waiting list. Two participants with negative experiences at other
transplant centers contrasted the experience they had had these centers with a sense
of warmth and personal attention they were receiving currently. The extensive eval-
uation process, and, for some, a 6-month period of substance abuse treatment prior
to listing, bestowed a sense that the candidates needed to prove their “legitimacy”
and worth for a liver transplant prior to being listed. As one participant noted, “I
was poked and prodded and talked to and closed.” Another highlighted that the
“bewildering” complexity of the evaluation and waiting protocol overwhelmed her
family and friends, necessitating frequent reassurance from the medical team. Oth-
ers noted that lack of contact with the team was perceived negatively and contrib-
uted to a sense of being forgotten. The consequence of a lack of positive care from
the medical team was felt to contribute to depression, hopelessness, and worsening
health: “I got to the point I believed I was not going to transplant—ever—and if I
died it was going to be because of the transplant coordinator.”
The positive aspects of caring that participants experienced or desired in their
transplant team were quick responses to concerns, a “serious demeanor,” a sense of
being treated as an equal (“a member of the team”), and frequent reassurance as to
the benefits of transplantation surgery. Despite this, there was the perception that
personal control over one’s life was surrendered as a consequence of being placed
on the transplant list. As one participant summed it up, “They [the transplant team]
hold all the keys.”
Elation to Despair
The participants spoke extensively about the feelings generated in the process of
waiting from the first recognition of the gravity of their illness, through the evalua-
tion process and eventual placement on the list, then, ultimately, to the reality of
waiting, where they all were at the time of their interviews.
Almost all had experienced a catastrophic event, such as a gastrointestinal
bleed, that established the diagnosis of ESLD and the despair that accompanied the
diagnosis. One patient related what her physician had told: “ ‘You have advanced
cirrhosis. I don’t think you’ll get a transplant. This is a serious illness.’ Basically, he
left me with the feeling that, ‘Sorry, you’re going to die.’ ”
Subsequently, the worry of getting listed is replaced with the relief and grati-
tude of being placed on the list, “So it was a tremendous relief to get over that hurdle
and get on the list. And now it’s just waiting.” Another noted, “I feel just incredibly
blessed.” The initial feeling is excitement, “like something is finally going to hap-
pen.” For those participants who had acquired their illness through alcoholism, all
expressed gratitude for “getting a second chance.”
Later, however, with increasing time on the list, the participants note discour-
agement, frustration, and boredom. In part, the frustration is attributed to the limi-
tations imposed by the illness. For others, it is due to a nagging sense that the trans-
plant will never occur and that they have been forgotten by the transplant team, “It
feels like they have forgot about you and that nothing is going to be done.” Partici-
pants noted an intensification of affect during their time waiting and a loss of con-
trol over emotions, as if on a “roller-coaster.” They discussed conscious self-talk and
efforts to retain a positive outlook and resist the pull of negative affective states. One
participant noted, “If I get into the rut in the mud, it takes me a while to get my
wheels back on the positive side of things—longer than it used to be.” A loss of
important roles and increasing disability was associated with a sense of isolation
and loneliness. For several of the participants, the outcome was depression, for
which they were currently being treated.
Finally, fear of the impending surgery was noted, as was the reality that their
anticipation and desire for transplantation came at the cost of another’s life. One
participant reflected on the time she was called in for transplantation (which failed
to materialize), “Oh my God. Somebody has lost somebody and even though I had
years ago processed all this, all I could do was cry.” More succinctly, another respon-
dent said, “[Waiting] is a mother-fucking bitch.”
Loss
Without exception, each participant identified loss as a pervasive experience. For
some, the loss of vitality associated with the fatigue, malaise, and cognitive slowing
associated with severe liver disease was particularly vexing. One participant
offered this metaphor for his diminution of life energy: “I mean, what is this kind of
like; not on, not off, like a three way light bulb and two of my watts are burned out. I
click, click, click but only one wattage of that bulb illuminates.”
Another participant mourned the loss of work and noted the erosion of his self-
worth as being “physical” and as an important part of his identity. Others note the
lack of control over their lives as contributing to being “undependable” in relation-
ships. The fatigue and forgetfulness make social obligations tedious or impossible
at times. Common to these concerns was the awareness that the illness places a limi-
tation on important roles that constitute a healthy sense of personal integrity and
autonomy. In response, people struggle to not allow this experience to define them:
“I have this disease, but it’s not me. It’s not my identity.”
Another dimension of this sense of loss was more specific to the experience of
the waiting list. Many participants voiced sadness and frustration over the
demands of waiting for “the call.” In response to the demand for relative proximity
to the transplant center, most had surrendered opportunities to visit friends or start
new careers. Being “on hold” or “held up” were constant refrains. Five of the 6 par-
ticipants expressed a desire to travel that was frustrated by waiting. One partici-
pant, after surrendering several such opportunities, took a trip to Europe against
the advice of her physicians. She noted, “It was like, if it’s going to happen, it’s going
to happen. But I’m not going to wait around.” The real risks of missing “the call”
and possible dismissal from the list for noncompliance severely limits such risk tak-
ing. For most, “It ends up that I can’t do the things that I’m dreaming of.” Losing the
ability to live a full life prompted a rethinking of their initial decision to be listed.
Questioning the Process

The choice to be on the wait list was not made without ambivalence and doubt.
Many questioned the rationality of having a procedure so full of complications: “I
know a transplant also opens up a whole other group of problems, and I just got use
to these.” The thought of giving up crossed people’s minds: “Should I really be
doing this, or should I just let it go?”
In the experience of waiting, some believed they were selling something of high
value to keep something of lesser value, “I got to sell the kids to keep the dog.”
Others believed the wait list afforded them the time to weigh the delicate balance of
the quality of a good life: “It makes me re-think, well, should I go out and do every-
thing I want, or should I be very protective of my body—what is the best chance for
a long life and a healthier life?”
To some, questions about the rationality of surgery arise from believing that the
best part of life has been lived: “Maybe I peaked—peaked early on. So then why go
on with this?” Questions about their own time on the wait list in comparison to oth-
ers were frequently heard: “I wonder if a lot of people would have a shorter wait?”
“Do you know anyone on it as long as me?”
In light of the difficulties endured to secure a place on the list and the shortage
of cadaveric organs necessitating long waits, these participants voiced questions
regarding the rationality of the current system, which is designed to make the pro-
cess equitable. One participant questioned the fairness of a system that allowed him
to wait so much longer than other candidates he knew. Another contemplated sur-
rendering his place on the list, “knowingly . . . if I was worse off than some 16-year-
old . . . I would honestly rather that person got it.” It is questions like these to which
participants search for answers.
Searching
Participants spent a significant amount of energy and time thinking about and
developing personal theories of their experience of waiting. Broadly, participants
theorized on the meaning this experience had on their own person and also on the
issue of their candidacy and relationship with the transplant team.
For those participants with alcoholic or drug-induced liver failure, self-blame
was voiced. Those with other forms of liver disease tended to question their bad for-
tune as a personal but elusive inadequacy as well: “One feeling I have is ‘wimpy,
wimpy liver—why me?’ ” In the context of an intense sense of loss of personal free-
dom and vitality, several participants expressed a sense of purpose to their suffering
and a belief that a positive outlook would contribute to a good clinical outcome. “I
began to believe that I can change by thinking myself better.” One participant sup-
ports his optimism of an eventual transplant and survival with the belief, as he laid
his head in his hand, “I’ve got too much to live for.” Others note a similar strong will
to live. Most participants explicitly denied a fear of death. Some described waiting
as a struggle or a fight that depression made difficult. More poignantly it was
referred to as “Purgatory,” the quintessential time to wait.
In contrast to the theories of personal struggle for meaning in the face of uncer-
tainty, participants tried to make meaning of the evaluation and waiting process in
relation to their medical team. Participants believe that they “proved their worth”
as an outcome of the evaluation and that inclusion on the waiting list is accompa-
nied by a desire by the transplant team to see them transplanted as soon as possible.
There was a variety of misunderstandings of the MELD scores that determine one’s
priority for transplantation. In the face of this, participants invoked omens and
dreams as predictors of their eventual transplantation, “My mother had a dream
that I would get a liver in October. And so we just decided ‘okay, it’s October!’ and
we sort of planned around that.” One participant’s transplant physician, address-
ing the odds of getting a liver, remarked that it was like winning the lottery and
getting struck by lightning by noting,
So I haven’t told him this yet, but we still have our home in Montana in the moun-
tains. And it got struck by lightning this summer! So I need to tell him—Okay now,
when’s the lottery coming—or the liver! I’ve got to tell him that.
More skeptically, others believe that the list does not even exist and that the team
hands out livers to those they like. Participants wanted justice and fairness in the
transplant process, even if that meant that a younger person would receive a liver
before they did.
Coping
It is a difficult process to wait for a liver transplant. Knowing the gravity of what is
in front of them, people ask, “How do I function day to day knowing that this is
hanging over my head?” For some, reframing the experience into something famil-
iar, namely a job, was necessary.
Things related to my illness are just part of my routine—it’s my job—to make sure
that I take my medicines, to make sure that I do the things I’m suppose to do, and do
them right, and not forget to do them.
For others, denying what is happening is the skill of choice. “I function with a
degree of denial. It is what you need to do.” In the face of the loss of control, accep-
tance was also stressed as a skill.
The most prevalent answer to the question was patience, patience, and more
patience. Learning patience emerged as the quintessential skill one must master to
wait for a liver transplant. It was said directly: “Hmm, I definitely have to learn
patience,” and “I just got to learn to wait.” It was also said metaphorically:
You have to wait at the station a long time for the train to come in and you might
miss the train when it does come, but just be patient; there will be another one along
in a little while.
Participants grappled with and ultimately developed coping strategies to deal

with the concept of waiting; the length, the uncertainty, and the nuanced changes in
the way in which time was experienced.
The Paradox of Time

Participants spoke of a new perspective on time emerging since being placed on the
list, and although not all experiences of time were uniform, it was a consistent issue.
Time is a constant consideration for patients, as they have a limited amount of time
to get to the hospital after they receive the call that an organ is available.
Time is experienced as one of “until transplant . . . and after transplant.” The
experience of being on the wait list becomes a way of life for some people: “You
know, in one way I’ve been on it for so long I hardly remember not being on it.” Time
is experienced both as “moving very fast” and stretching out all at once. Another felt
he had been waiting 4 years, when, in fact, it was 2 years, as his spouse reminded
him. The uncertainty of when one would be called “slows time down, because
it’s everyday, waiting for the call.” Participants plan and prepare for the future,
wondering about their next career or building “a nest for after the transplant.” They
also plan and prepare for their death. One participant reflected on his death, hoping
that “when they have the viewing, they will be able to say I’ve had a good life.”
Composite Structural Description: Factors That

Contribute to the Experience
The experience of waiting for a liver transplant is framed by both the experience of a
severe and debilitating illness and the requirements of compliant participation in a
complex medical process that includes hospitalizations, exhaustive evaluations,
and subsequent placement on a waiting list. The participants initially experience an
acute and life-threatening illness, often involving a massive gastrointestinal bleed
or a coma. They are told that they have a terminal illness, ESLD, and will die without
a liver transplant. As a consequence of the fatigue associated with ESLD, they expe-
rience a loss of vitality and subsequent inability to perform in their roles, whether at
work or in relationships.
Being selected as a candidate for a liver transplantation is experienced as a new
hope and a second chance, yet on account of physical limitations and the demands
of availability on short notice for the surgery, participants experience loss and con-
finement. Unable to travel or set an independent direction for their lives, former
self-images and concepts are challenged and either incorporated into new or trans-
formed understanding of self, their bodies, and the world, or simply resisted. The
relationship with family and the transplant team comes to the forefront in the social
sphere. Inconsistencies in opinions among team members, a failure to return calls,
inattention to concerns, and false alarms requiring a hurried and, ultimately,
wasted trip to the transplant center erode trust and contribute to despair. Con-
versely, prompt responses and consistent care are viewed as expressing warmth
and buoy hope. A new set of skills is called on. These include patience and denial as
strategies for to deal with uncertainty and the possibility of death. Emotional
responsiveness and vulnerability to profound discouragement result and replace
earlier elation and gratitude.
By definition, time passes while on the waiting list and is a constant consider-
ation. Waiting time is a time apart and has a special quality out of sync with both the
past and the imagined future that follows transplantation. There is awareness that
so much is out of the participant’s hands, and attributions of illness, control, and
outcomes are explored. Time on the list calls into question the rationality and suit-
ability of the surgery.
Composite Textural Description: The Meaning of Waiting

From the terror of sudden and catastrophic illness and the anxiety of survival
emerges the “last chance” for life in the form of liver transplantation. Elation, grati-
tude, and a renewed sense of hope come with placement on the list. So, in time, does
frustration with the ongoing limitations imposed by the body in the form of fatigue
and the requirement of maintaining proximity to the transplant center. As impor-
tant roles are surrendered, boredom and a sense of worthlessness dominate. They
experience themselves as interrupted and alone. Lifelong goals are suspended or
abandoned, and participants experience despair. Reassurance, comfort, and consis-
tent information from the transplant team at times are sparse and contribute to a
sense of isolation. Uncertainty as to when the call will come, if ever, instills doubt.
Disturbing thoughts intensify and spread through the participant’s consciousness:
Have they forgotten me? What is to become of me? Is there really a list at all? All the
while, as time passes, they struggle not to forget who they were prior to getting sick
or to imagine themselves well. They are neither healthy nor ill, just “pretransplant.”
They are the people of the List. They are denizens of a strange land with dark ter-
rain, where time speeds up and slows down in rhythm with the imaginatively felt
signs of closeness or distance from transplantation, their own private eschaton.
The essence of the experience, according to Moustakas (1994), is an integration
of the composite textural and structural descriptions. Representing the final step of
analysis, an exhaustive description of the essence of waiting for a liver transplant is
presented below.
Essence: The Ontology of Waiting

Waiting is a time apart. Loss of roles and loss of vitality diminishes participation in
the objective reality of life outside and beyond the list. Time on waiting lists is a time
apart from the narrative of their lives. Those waiting feel held up or on hold in a pur-
gatory with its own clock, yet there is time to transcend this experience and grow in
the midst of the mundane immanence of pain, the clinical routines, and the intru-
sions of pagers and false alarms. It is a time of utter subjectivity. Waiting on the list is
recognized as subverting personal goals and questioning others’ goals for them. It is
a time to both prepare for life and prepare for death. Life on the waiting list is a con-
stellation of experiences instead of a cohesive sense of history. Hope is the value that
fuels the endeavor of waiting expectantly and with equanimity but is difficult in
face of isolation, profound fatigue, and boredom. Despite the initial sense of elation
and gratitude that accompany being placed on the transplant list, in time, depres-
sion and emotional lability are common to the experience and arise out of a sense of
frustration of other goals. The need for contact, information, and reassurance from
the transplant team is strong and serves to resist despair. In response to the threats to
personal identity and continuity, a new set of meanings emerge out of initial
thoughts of self-blame and doubt that accompany the diagnosis of ESLD and the
passivity of patienthood. The power of positive thinking, learning and applying
patience, the conscious use of denial, magical thinking, and a sense of the transplant
team’s unique commitment to them provide hope and help to frame uncertainty. In
due time, reevaluating and questioning their decision to accept transplantation
restores a sense of agency and control.
CONCLUSION
The problem that framed the study was the high rates of depression and suffering
that are found in people awaiting liver transplantation. An examination of the lived
experience of patients waiting for a transplant followed. Because the voices of these
patients are often heard from afar and muffled by pressing medical decisions, we
chose a phenomenological approach, in which the experiences of these people
could be explored fully. In the process of developing the essence, three findings
emerged that point to the disruption of participants’ life story.
First, consistent with past research, patients view themselves in terms of their
lab results and not with a broader sense of self (Forseberg et al., 2000). In this study,
participants’ construction of their current self is shaped by scores, tests, and num-
bers. Patients talk extensively about their MELD scores, their test results, and their
impending tests, yet none had a clear understanding of the MELD. The amount of
time spent waiting preoccupied the thoughts of the participants; this, however, is
the criterion that has been removed with the new changes to the system. The ratio-
nality of the system is not comforting to these patients. It runs counter to the
commonsense notions of waiting in line; whoever waits longest should get service
first. As noted earlier by Levenson and Olbrich (1987), we found a disruption
between patients on the wait list and the medical team. The experiences of these
patients, however, reveal critical aspects of care that patients need during the wait-
ing period, including feeling part of the team, frequent contact, and help with the
logistics of transportation.
Second, a new perspectives of time emerged, one that was both moving quickly
and slowing down. Participants seemed to respond by preparing for a new life after
transplant, “wondering what my next career will be,” and simultaneously reflect-
ing on how other people will see them after death. Along similar lines, Lumby
(1997) found that after receiving a transplant, patients described waiting as a life-
death paradox, not fully knowing which is to come.
Finally, gratitude, transformation, and change in perspective are undoubtedly
part of the experience. However, a deep sense of loss also accompanies waiting.
People lose vitality, autonomy, and future dreams. Participants spoke of travel in an
almost metaphorical sense of moving from where they are presently, namely, waiting.
Bury’s (1982) concept of chronic illness as biographical disruption serves as a
starting point in the analysis of the experience of waiting for a liver transplant. Bury
characterized the complex ways in which the disruption of personal continuity
occasions a fundamental rethinking of a person’s biography and self-concept. He
theorized that the disruption is on multiple levels, affecting not only metacognitive
levels of meaning but relationships and material affairs as well. For his understand-
ing of the experience of illness, Bury drew on Giddens’s (1979) notion of a critical sit-
uation in which three aspects are attained: (a) a disruption of taken-for-granted
assumptions and the breaching of commonsense boundaries; (b) profound disrup-
tions in explanatory systems normally used, such that a fundamental rethinking of
the person’s biography and self-concept is involved; and (c) the response to the dis-
ruption involves the mobilization of resources to face the situation more ade-
quately. Bury viewed medicine as a cultural system that is both a resource in times
of distress and “a constraint in their search for the deeper meaning of experience”
(p. 179).
Using this notion of medicine as a cultural system, we can begin to interpret the
key findings of the study. First, people initially experience elation and gratitude
when placed on the wait list. After the acute near-death episode, the ideas of an
extended life through transplant, the possibility of a new liver, is the richest of
resources. They are placed on the list, and the waiting begins. Waiting, however,
gives people time to think, placing them in an extended mirror of their own mortality.
The smaller constraints of the list (pagers, transportation, restrictions on travel)

might point to deeper constraints to the agency of the person and one’s search for
meaning. All people want to travel. And what is travel except a movement, a leav-
ing of the old in search of the new? One of the participants explicitly questions if a
transplant is the best thing but comes back to the words of his doctors: “You will feel
better when you get this.” What this neglects is his lived experience on the list. It
does not address his search for meaning in the present. The future is always the goal,
and the present is held up and forgotten.
This disruption between the lives of the participants prior to becoming ill and
where they are currently is adequately captured by Bury (1982). They note the loss
and the sense of being “held up” from the directions and goals of the past. They
remark on the loss of that “taken-for-grantedness” of their experience of self and
others. Although this brought about new insights and some positive changes, the
inaccessibility of the new self that transplant promises elicits despair. Therefore, the
very structure of the waiting list holds up the reconstruction of biographical narra-
tive that Bury and others believe to occur in response to the challenge of chronic
illness.
Our understanding of Bury’s (1982) taken-for-grantedness, which is torn asun-
der in the experience of waiting, is informed by Bourdieu’s (2000) notions of habitus
and time. For him, the phenomenological experience of the world as taken for
granted presupposes a level of harmony between the disposition of agents and the
demands of the social and material world into which they are inserted. Personal
change or transformation of habitus develops in the gaps between expectations and
experience. If sufficiently free, the person adapts through a process of practical
reflection, as expressed in thought and action. Habitus is the activity of the person,
the degree of empowerment that tends to produce practices objectively adjusted to
possibilities of a present situation. Our participants experience time passing in new
ways. Their experience of time is dependent on their perceptions of their past, the
limitations of their present, and the remoteness of a future that is out of their hands.
Time per se is experienced when the link between one’s expectations and the chance
of their fulfillment are disrupted. It is this discrepancy between what is anticipated
and the ongoing situation that gives rise to the experience of waiting. For our partic-
ipants, as a sense of the future as “forthcoming” is broken, the present is experi-
enced with regret, boredom, and discontent. In response, they consider taking
themselves off the list as a way of reconstructing their narrative, feeling their
agency, and, ultimately, feeling alive.
Limitations and Future Research

The limitations of the current study include the following: All participants were
White, and although this represents the majority of people on the wait list at the
transplant center, we question whether divergent cultural beliefs about time and ill-
ness would yield similar results. Future research with people of different ethnic
background is needed. Furthermore, the phenomenological approach did not allow
for us to examine Bury’s (1982) ideas of external resources. As well, although differ-
ences in socioeconomic order were clear from observations of people’s living condi-
tions at the time of interview, they were not analyzed in the current study. These
limitations open new horizons for future research. Case study might be used to
examine more of the social circumstances and context of the waiting period for
participants.
Implications
Specific to the experience of waiting for organ transplantation, the following inter-
ventions would address the findings of the study. First, physicians and transplant
coordinators can better answer the requests of their waiting patients for quick, ear-
nest responses. Physicians might also wish to incorporate a more succinct descrip-
tion of MELD scores while helping the patient interpret his or her situation and self
as more than a score. Transplant teams can broaden their definition of team mem-
bership to include the patients and family as team members as well as including
their views in setting overall policy. Ultimately, transplant teams might decide to
give some of the “keys” back to patients, allowing them to make more lifestyle
choices (e.g., travel). In taking the findings of this study seriously, nurse coordina-
tors might want to develop a network, perhaps through the Internet, of communi-
cating and discussing the issues of loss of past self and questions about the rational-
ity of the transplant. Chat rooms for patients might serve as a good place to start.
Mental health providers that work with this population might want to consider
group or individual work on rebuilding a coherent biographical narrative in the
midst of the waiting period.
All patients, in one way or another, are waiting for a procedure, for the medicine
to work, and for life to return to normal. Waiting for a transplant might be an
extreme form of this and so might provide insights into the nature of waiting while
ill. We have been reminded often of one participant’s words: “For myself, the wait-
ing experience is something that is personal, it is mine.” Acknowledging this while
providing support and care through the process has challenged us to see anew the
robust and dynamic nature of waiting for a liver.
REFERENCES
Anderson E. H., & Spencer, M. H. (2002). Cognitive representations of AIDS : A phenomenological study.
Qualitative Health Research, 12, 1338-1352.
Blanch, J., Sureda, B., Flavia, M., Marcos, V., de Pablo, J., De Lazzari, E., et al. (2004). Psychosocial adjust-
ment to orthotopic liver transplantation in 266 recipients. Liver Transplantation, 10(2), 228-234.
Bourdieu, P. (2000). Pascalian meditation. Stanford, CA: Stanford University Press.
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4, 167-182.
Caccamo, L., Azara, V., Doglia, M., Sessini, M., Rossi, G., Gala, C., et al. (2001). Longitudinal prospective
measurement of the quality of life before and after liver transplantation among adults. Transplant
Proceedings, 33(1/2), 1880-1881.
Centers for Disease Control. (2003). National center for health statistics. Retrieved November 8, 2004, from
http://www.cdc.gov/nchs/fastats/liverdis.htm
Cheung, J., & Hocking, P. (2004). The experience of spousal carers of people with multiple sclerosis. Qual-
itative Health Research, 14, 153-166.
Creswell, J. W. (1998). Qualitative inquiry: Choosing among five traditions. Thousand Oaks, CA: Sage.
Creswell, J. (2003). Research design: Qualitative, quantitative, and mixed methods approaches. Thousand Oaks,
CA: Sage.
Forsberg, A., Backman, L., & Moller, A. (2000). Experiencing liver transplantation: A phenomenological
approach. Journal of Advanced Nursing, 32(2), 327-334.
Frankl, V. (1997). Man’s search for ultimate meaning. New York: Plenum.
Giddens, A. (1979). Central problems in social theory. London: Macmillan.

Husserl, E. (1960). 1859-1938 Cartesian meditation: An introduction to phenomenology. The Hague, the Neth-
erlands: Martinus Nijhoff.
Ironside, P. M., Scheckel, A., Wessels, C., Bailey, M. E., Powers, S., & Seeley, D. K. (2003). Experiencing
chronic illness. Qualitative Health Research, 13, 171-183.
Jones, L. B., & Egan, M. (2000). The transplant experience of liver recipients: Ethical issues and practice
implications. Social Work Health Care, 31(2), 65-88.
Karam, V., Castaing, D., Danet, C., Delvart, V., Gasquet, I., Adam, R., et al. (2003). Longitudinal prospec-
tive evaluation of quality of life in adult patients before and one year after liver transplantation.
Liver Transplantation, 9(7), 703-711.
Levenson, J. L., & Olbrisch, M. E. (1987). Shortage of donor organs and long waits. Psychosomatics: Journal
of Consultation Liaison Psychiatry, 28(8), 399-403.
Lumby, J. (1997). Liver transplantation: The life/death paradox. International Journal of Nursing Practice, 3,
231-238.
Meadows, L. M., & Morse, J. M. (2001). Constructing evidence within the qualitative project. In J. M.
Morse, J. M. Swansen, & A. Kuzel (Eds.), Nature of qualitative evidence (pp. 187-200). Thousand Oaks,
CA: Sage.
Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage.
Streisand, R. M., Rodrigue, J. R., Sears, S. F., Perri, M. G., Davis, G. L., & Banko, C. G. (1999). A psycho-
metric normative database for pre-liver transplantation evaluations: The Florida cohort 1991-1996.
Psychosomatics, 40(6), 479-485.
United Network for Organ Sharing. (2005). National data reports. Retrieved February 17, 2005, from http:/
/www.unos.org/data/about/viewDataReports.asp
Van Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. London,
Canada: State University of New York Press.
Wainwright, S. P. (1995). The transformational experience of liver transplantation. Journal of Advanced
Nursing, 22, 1068-1076.
Jill Brown, M.A., is a graduate student in developmental psychology at the University of Nebraska–
Lincoln.
James H. Sorrell, M.D., is an assistant professor of psychiatry at the University of Nebraska Medical
Center and director of the Office of Psychological Medicine, Omaha.
Jason McClaren is a research coordinator in the Department of Psychiatry at the University of

Nebraska Medical Center, Omaha.
John W. Creswell, Ph.D., is the Clifton Professor of Educational Psychology at the University of
Nebraska–Lincoln and a professor of family medicine at the University of Michigan. He is director of
the Office of Qualitative and Mixed Method Research.

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QUALITATIVE

Brown et al. / WAITING

Waiting for a Liver Transplant

QUALITATIVE HEALTH RESEARCH, Vol. 16 No. 1, January 2006 119-136

THE PHENOMENOLOGICAL APPROACH

According to Frankl (1997), the construction of meaning is a central human activity.

TABLE 1: Examples of Invariant Structures and Their Corresponding Meaning Units

Invariant Structure Meaning Unit

I miss working so much it upsets me The inability to work is experienced as a feeling of

composed a composite textural and structural description of the phenomena.

TABLE 2: Sample of Three Emerging Themes and Corresponding Meaning Units

Theme Meaning Units

Loss The inability to work is experienced as a feeling of loss

qualitative research (Creswell, 2003). First, we achieved verification by doing a

can be understood as “what happened” surrounding the central experience of wait-

Doctors, Teams, and Trust

Questioning the Process

Participants grappled with and ultimately developed coping strategies to deal

The Paradox of Time

Composite Structural Description: Factors That

Composite Textural Description: The Meaning of Waiting

Essence: The Ontology of Waiting

The smaller constraints of the list (pagers, transportation, restrictions on travel)

Limitations and Future Research

Giddens, A. (1979). Central problems in social theory. London: Macmillan.

Jason McClaren is a research coordinator in the Department of Psychiatry at the University of

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