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

This study arose out of being ill at ease. One of the authors (J.S.) is a psychiatristresponsible 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],

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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.

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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.

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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

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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

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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

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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 feel they are intruding on my life

Waiting is felt when interferes with goals

I know that a transplant opens up a whole other group of problems . . .

Questioning rationality of surgery

I can’t get into the negative—I don’t like it—I don’t like personally being there and sometimes it’s a lot of work

Resisting negative outlook

In the beginning, it was a good feeling, like something is going to finally happen

Initial excitement/elation with being listed

When frustrated, I can’t do anything—when frustrated, I can’t control going down

Frustration from waiting renders people impotent and out of control

So now I found out, yes, I can be human just like the rest of us

Illness makes one face own mortality

And I have a disease, but it’s not me. It’s not my identity

Refusal to see illness as part of identity

But it really gave me an insight into—I needed to pull all of these pieces together of who I was

Illness/waiting brings about personal change

I just went into shock . . . but cried all night feel- ing that nothing but dying was left for me

Death is only option

The depression that hits you sometimes can be devastating

Depression is 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

that is mine Waiting is personal

What happens as far as the illness and things related to that is just part of my routine— my job

Waiting becomes job

I pretty much gave up Lost will to live One feeling I have is “wimpy, wimpy liver, why

me?” Questioning one’s bad fortune

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

going Waiting affects relationships

So it is a tremendous relief to get over that hurdle and get on the list. And now it’s just waiting.

Initial worry is replaced by relief; downplay 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

to be done Forgotten

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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

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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

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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

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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

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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.”

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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,

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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,

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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-

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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

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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.

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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

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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.

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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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