Journal of Pain and Symptom Management
Volume 40, Issue 2 , Pages 246-255, August 2010

Exploring the Meaning of Chronic Rejection After Lung Transplantation and Its Impact on Clinical Management and Caregiving

  • Mi-Kyung Song, PhD, RN

      Affiliations

    • School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
    • Corresponding Author InformationAddress correspondence to: Mi-Kyung Song, PhD, RN, School of Nursing, University of North Carolina at Chapel Hill, Carrington Hall CB #7460, Chapel Hill, NC 27599, USA.
    • ,
  • Annette J. DeVito Dabbs, PhD, RN

      Affiliations

    • School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
    • ,
  • Sean M. Studer, MD

      Affiliations

    • Pulmonary Hypertension Program, Newark Beth Israel Medical Center, Newark, New Jersey, USA
    • Lung Transplantation, Newark Beth Israel Medical Center, Newark, New Jersey, USA
    • ,
  • Robert M. Arnold, MD

      Affiliations

    • Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
    • Section of Palliative Care and Medical Ethics, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA
    • Palliative Care Fellowship Training Program, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA
    • ,
  • Joseph M. Pilewski, MD

      Affiliations

    • Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
    • Adult Cystic Fibrosis Program, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA
    • Lung Transplant Program, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA

Accepted 4 January 2010. published online 14 June 2010.

Article Outline

Abstract 

Although the literature continues to portray chronic rejection after lung transplantation as ominous with no known treatment, no studies have examined family and clinician caregivers' perceptions of the diagnosis of chronic rejection and its impact on the course of clinical care. We explored the meaning and impact of chronic rejection from the perspective of family (n=10) and clinician (n=3) caregivers. We found that family caregivers considered the onset of chronic rejection to be inevitable, irreversible, unpredictable, and going back to pretransplant. Clinicians considered chronic rejection as a harbinger of deterioration and peril and expressed trepidation about informing recipients and their family caregivers about the diagnosis. Despite the heightened caregiving duties and challenges of treating chronic rejection, its unpredictable course and the prospect of retransplant instilled hope for stabilization or cure among most clinicians and caregivers, leading them to support recipients' wishes to pursue potentially futile treatments. Until recipients were no longer competent, caregivers believed all treatment options (including retransplant) had been exhausted, or suffering was prolonged, caregivers were reluctant to halt extraordinary treatment measures. Caregivers perceived that certainty regarding poor prognosis was required for palliative care and that palliative care was end-of-life care. Consequently, trials of aggressive treatment typically precluded palliative care.

Key Words: Lung transplantation, chronic rejection, palliative care

 

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Introduction 

Lung transplantation offers patients with advanced lung disease the hope of prolonged survival and improvement in quality of life.1 Today, nearly 21,000 people in the United States have undergone lung transplantation, with an annual number of procedures reaching 1300.2 Despite significant improvement in overall survival, survival rates are only 84% after the first transplant year, 68% in Year 3, and 52% in Year 5.2 This decline in survival is more rapid compared with other solid organ transplant recipients; three- and five-year survival rates are 80% and 74% for heart and 94% and 90% for kidney transplant recipients, respectively.2 The primary threat to survival and quality of life after lung transplantation is the development of chronic rejection, which manifests as bronchiolitis obliterans syndrome (BOS), and affects more than 34%–64% of recipients by Year 5.3, 4, 5 BOS is determined based on established criteria:6 evidence of ≥20% decline forced expiratory volume in one second (FEV1) from baseline (personal best) within a three-week interval in the absence of any confounding conditions (i.e., infection, acute cellular rejection, or airway stenosis) to explain the airflow obstruction.

With the exception of retransplantation, no effective treatments for chronic rejection exist; patients with BOS ultimately die from either respiratory failure or secondary infection.3 In a cohort (n=311) that underwent lung transplantation between 1998 and 2004, we found that 61 lung recipients developed chronic rejection (with BOS stage ≥2), and the median survival after the onset of chronic rejection was 12.6 months.7 From the onset of chronic rejection until death, lung transplant recipients experienced frequent hospitalizations (range: 1–34 admissions), emergency department visits (up to 17), and intensive care unit (ICU) admissions (up to 6).7, 8 Furthermore, up to 84% of deaths after lung transplantation took place in institutions; of the institutional deaths, 45%–61% occurred in the ICU.7, 9

Lung transplant recipients also develop multiple comorbid conditions because of prolonged exposure to immunosuppression. These comorbidities may threaten their long-term survival and quality of life.10, 11 They also commonly experience high levels of psychological distress (e.g., anxiety and depression) and report 17 physical symptoms on average.12, 13

Family caregivers of patients undergoing lung transplant also report high levels of subjective burden, including symptoms of depression, anxiety, and stress related to tackling organizational and financial difficulties. Additionally, family caregivers express the need for more information, better communication with clinicians, and better access to psychosocial support.14, 15 Furthermore, the level of distress that families experience may escalate as recipients' conditions worsen.16, 17

The literature continues to portray chronic rejection as ominous and life threatening, with no proven effective treatment. A better understanding of how family and clinician caregivers perceive the diagnosis of chronic rejection, how the onset of chronic rejection impacts on caregiving, what influences caregivers' subsequent treatment decisions, and how they view palliative care can be helpful to identify areas of clinical management for improvement and determine how palliative care may be integrated into post-lung transplant care. Thus, the purposes of this study were to explore the meaning of chronic rejection after lung transplantation from the perspectives of family and clinician caregivers and describe the impact of the onset and progression of chronic rejection on subsequent clinical management decisions and caregiving.

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Methods 

Design 

This qualitative descriptive study used grounded theory techniques to explore how family and clinician caregivers perceived the diagnosis of chronic rejection and its impact on the course of clinical care after its onset. Qualitative description is a naturalistic approach to identify salient meanings, experiences, and processes that explain complex psychosociological situations and phenomena, such as family and clinician caregivers' responses to the diagnosis of chronic rejection and its effect on the course of illness and subsequent clinical management.18 The protocol was approved by the institutional review board, and all participants provided written informed consent.

Sample 

The initial informants recruited for this study were family caregivers of recipients diagnosed with chronic rejection. We chose to target family caregivers based on the pivotal role families play in clinical decision making, evidence of stressors that family caregivers commonly experience,14, 15 and our particular interest in exploring the influence of chronic rejection on the treatment decisions family members face as recipients' conditions deteriorate. However, during the interviews, family caregivers often referred to conversations they had with transplant clinicians about chronic rejection, indicating that family and clinician caregiver reactions were inextricably linked. Therefore, to gain a better understanding of the discourse surrounding chronic rejection, we subsequently recruited clinician participants.

The final sample comprises 10 family caregivers (including two bereaved) of 10 lung transplant recipients, and three transplant pulmonologists who were the primary transplant medical care providers for the 10 lung transplant recipients, who met the following inclusion criteria: were 18 years and older at the time of transplant and diagnosed with histological chronic rejection or BOS stage ≥2 based on FEV1.6 Purposive sampling was used to maximize the variability of caregiver participants, such as recipients' age at the time of transplant, gender, relationship between the family member and recipient (e.g., parent and child, husband and wife), and clinical course (e.g., length of survival after transplant, length of survival since chronic rejection, and if deceased, the location of death). The family caregivers were identified by reviewing the medical records, and their roles also were confirmed at the time of interview. Bereaved family caregivers were selected from among recipients who died less than two years before contact to minimize difficulty recalling the details about the illness and end-of-life experience. We first approached 10 family caregivers when lung transplant recipients returned to the transplant center for post-transplant evaluations. Although all 10 initially agreed to participate in the study, ultimately two declined because the recipients' conditions were rapidly worsening. The remaining eight provided written informed consent. Caregivers of deceased recipients were recruited through an invitation letter sent by the attending physician explaining the study and asking them to participate. Two bereaved relatives provided contact information and written informed consent. Family caregiver interviews continued until the concepts that emerged during the early family interviews reoccurred in successive interviews and validated or clarified emerging categories.

Of the five post-lung transplant physicians at the transplant center, four were directly involved in the care of the recipients in this sample; of those, three (all male, more than five years of clinical experience as transplant clinicians) agreed to participate in the study. Characteristics of the final sample of family caregivers and their lung transplant recipients are presented in Table 1. All participants were non-Hispanic whites. Six of the family caregivers had completed at least a high school education.

Table 1. Characteristics of the Final Sample of Family Caregivers and Their Lung Transplant Recipients
Family CaregiverLung Transplant Recipient
IDRelationship to RecipientAgeaPretransplant ConditionOnset of Chronic Rejection (Post-Transplant Year)Location
1Father24Cystic fibrosis1ICU
2Wife69Emphysema2Deceased (home hospice)
3Wife49Emphysema3Home
4Mother20Cystic fibrosis6ICU
5Mother24Cystic fibrosis2ICU
6Wife26Cystic fibrosis6Home
7Husband52Emphysema4Home
8Mother33Cystic fibrosis5Deceasedb
9Grandmother21Cystic fibrosis2ICU
10Husband61Emphysema3Home

aAt the time of transplant.

bAfter a five-month ICU stay.

Data Collection and Analysis Procedures 

Each interview was conducted by a researcher trained in qualitative interview techniques.19 Family caregivers were interviewed either face-to-face in a private room located at the transplant center (n=3) or by telephone (n=7) according to caregivers' preferences. All physician interviews were conducted face-to-face in a private room. Interviews included both semistructured and open-ended questions to encourage participants to express their perspectives on chronic rejection, including its meaning and influence on subsequent treatment decisions and caregiving, and allow unforeseen concepts and relationships to emerge. In subsequent interviews, probing questions stemmed from emerging categories.20 Interviewers made field notes to document participants' nonverbal behaviors and other contextual circumstances that were observed during the interviews. Interviews lasted approximately one to one and a half hours and were audio recorded, transcribed verbatim, and reviewed for completeness by the interviewers.

The transcripts were imported into ATLAS.ti 5.2 (T. Muhr, Scientific Software Development, 2008), a database software program to facilitate organizing, coding, searching, and archiving the qualitative data. Two researchers experienced in methods of qualitative inquiry (M.-K.S. and A.J.D.D) conducted the analyses. Initially, transcripts were reviewed in total to get an overall sense of the content. Data analysis began with labeling words, phrases, and excerpts21 that represented caregivers' perspectives of the meaning and impact of chronic rejection. Data collection and analysis proceeded in tandem, using constant comparative analysis techniques.22 As interviews were completed, they were analyzed, and the information gleaned from the analysis was used to guide and direct subsequent interviews. Over time, as successive caregivers were interviewed, the questions were directed to explore initial interpretations, follow leads, and clarify patterns that appeared across caregivers' accounts. A list of codes was generated, which was then collapsed into categories based on the most salient themes expressed by family and clinician caregivers. Memos were written to document the emerging concepts and their potential relationships. Theoretical sampling was used to maximize the discovery of conditions and variations that helped to explain the phenomena.20 For example, during the analysis, we began to suspect that the prospect of retransplantation played an important role in family and clinician caregivers' responses to the diagnosis of chronic rejection. Therefore, theoretical sensitivity, or recognition and awareness on the part of the researchers of the need to further explore considerations about retransplantation enabled us to identify what ultimately became a core element of the analysis.

Weekly investigator meetings were held to discuss coding and analytic decisions and reach consensus. Rigor and credibility were enhanced by citing “thick descriptions” of participants' perspectives, recruiting a variety of caregiver informants, dual coding and analysis of interviews, validating study conclusions with experts, and maintaining an audit trail of analytic decisions.22 Consistent with methods for reporting the findings of qualitative inquiries, results are presented as an integration of caregivers' verbatim excerpts (in italics) and commentary by the researchers' regarding their interpretations of the meaning and impact of chronic rejection.23 An algorithm is also included to better understand the considerations and context of clinical management decisions after the onset of chronic rejection.

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Results 

Meaning of Chronic Rejection From Perspective of Family Caregivers 

Inevitable 

Most family caregivers recalled being told about the possibility of chronic rejection before transplant, yet they admitted hoping their loved ones would be spared as long as possible. When asked to share their initial reactions to hearing the diagnosis of chronic rejection, family caregivers typically responded, “…we always knew it [chronic rejection] was going to happen sooner or later, so it wasn't a shock or foreign notion to us.” (ID 4)

However, when asked to explain what chronic rejection meant to them, family caregivers reported overwhelming disappointment and concern for the future of their loved ones. Families often equated the diagnosis with mortality and loss. “No turning back…I was thinking, oh, I am gonna lose him…so, I was scared and disappointed that the treatment [immunosuppressants] didn't work.” (ID 6)

Irreversible 

Family caregivers knew that chronic rejection, unlike acute rejection, was unresponsive to treatment. “We knew that if it [rejection] was chronic that it would get worse and worse for her…that we may lose her.” (ID 9) One family caregiver admitted, “As far as chronic rejection, yeah it scares the hell out of me …you can't take a medicine and make it go away.” (ID 3)

Unpredictable 

On hearing the diagnosis, the most challenging aspect for family caregivers was the uncertainty and unpredictability of the illness course after the onset of chronic rejection, as the husband of a recipient said, “What's the future gonna bring her? And you're worried about coming to the point when options are limited…it's something I worry about all the time” (ID 7). Yet among other family caregivers, the unpredictable course raised hopes that their loved ones would stabilize, and the condition was not going to affect them too much. They tried to avoid thinking about the future, as the wife of one recipient described: “I tell others not to even think about it [chronic rejection]. You just do a day at a time…because they don't know, some people you know it wipes them out right away….other people live another 10 years with chronic rejection….everyday there's something new coming out….” (ID 3)

Going Back to Where We Started 

Families considered the onset of chronic rejection to be a turning point as recipients regressed to their former pretransplant state. “Well, I guess that's the way you go [die]…we both know that whole situation. This takes you right back to pre-transplant. That's exactly what you are thinking when you get the report” (ID 7). The diagnosis brought back memories of the caregiving required during the pretransplant stage:

Chronic rejection is something that's not going to get any better…I dealt for a lot of years with him with emphysema…I guess that's how I look at it occurring…him becoming a COPD patient…but we will just have to wait and see. (ID 3)

Going into transplant they said she wouldn't need her oxygen and she wouldn't decline anymore… now she needs [oxygen] for the rest of her life. (ID 9)

Meaning of Chronic Rejection From Perspective of Clinician Caregivers 

Peril 

The initial reaction of clinicians to discovering that a patient has chronic rejection was “horror” (Physician B) because they considered the diagnosis to be a harbinger of decline. The primary determinant of clinicians' level of pessimism about chronic rejection was the recipient's pulmonary function status, as one clinician described, “If they [recipients] have preserved lung function, I don't worry so much. But when the FEV1 starts to fall, my heart sinks because I know what that means…it's not good…we're not likely to get them back.” (Physician B)

Trepidation 

Clinicians expressed trepidation about informing recipients and their families of chronic rejection and discussing prognosis. “Until I am sure that nothing else is going on to explain the findings, I don't want to give him [recipient] the weight of this terrible diagnosis” (Physician A). Clinicians are reluctant to paint a dismal picture. When asked how recipients and their family caregivers receive the bad news, the perceptions of all three clinicians mirrored family caregivers' responses:

Well, they are upset. They think of it [chronic rejection] as a cancer. Most are astute enough to realize that it is not good. They know what life is gonna be like. They've all been through it [progressive lung disease] before, so they kind of know what that is all about. Most of the time, they are thinking about death. If they haven't sensed the panic and concern from my voice, they get it from somewhere. (Physician B)

Although clinicians said that it is important to be honest with patients, they found it difficult to discuss prognosis because of the unpredictable course after chronic rejection. Furthermore, patients' attitudes and the lack of effective treatment for chronic rejection add to their difficulty.

Patients are fighters because they already came through a transplant. They're not going to just throw in the towel; they want to be as functional as they can for as long as they can…The lack of a standard approach to treatment of chronic rejection just causes a lot of consternation…what should you tell the patient? That it's a death sentence? They're likely to require a re-transplant? They might get a little better? They might stabilize but there is a significant chance they are going to progress because that's the natural history of the disease and I tell them all up front that the treatments are not optimal. (Physician A)

Clinical Management and Caregiving After the Onset of Chronic Rejection 

Treatment Imperative 

Clinical management after the diagnosis of chronic rejection was somewhat paradoxical. Although recipients and caregivers shared the belief that no effective treatments for chronic rejection exist (except retransplantation), they considered trials of intense therapies as the norm. Clinicians were rarely conflicted about supporting recipients' requests for trials of aggressive, often risky treatments. “I always try and treat people…to offer them something…I try and really push the issue that we have to maintain lung function where it is now and not continue down a slide” (Physician B). Clinicians justified their approach based on the variability and unpredictability of the illness course after chronic rejection and their duty to respect recipients' willingness to pursue aggressive treatment. In the words of one clinician, “Statistics don't really matter to individual patients, so we do what we can do to treat it [chronic rejection] and keep our fingers crossed” (Physician C), and a family caregiver, “We kinda knew it was going to be more difficult for him. The doctors played up [some treatments]. They said it wasn't going to improve for him, but if we can keep him from falling further back we can keep him from having to get back on oxygen and all those things” (ID 6). As clinicians said,

Recipients drive the conversation…when someone [recipient] asks me, what do I do then? I say we will try to continue to manage your immunosuppression as best we can…try to find a new way to manage your symptoms as they come along. Most patients want active treatment. (Physician A)

The idea of conceding defeat is untenable…I'm probably more guilty for pushing on for everybody, but I rationalize it because it's hard to predict whose going to get getter and who does not…the only way you will know is to try and see. (Physician C)

Specter of Retransplantation 

Retransplant was considered a viable option to clinicians with an exception of when recipient stewardship of their transplanted lung(s) was in question. One of the clinicians described his approach to retransplant as:

Our criteria for re-transplantation have been more liberal than many other centers but we certainly do not accept all patients for re-transplant. There are times when re-transplant would be futile and harmful to the community because now we've misused resources…for example for patients who are not taking their meds, go back to smoking or do a number of self-destructive things…under these circumstances I see it [re-transplant] as futile. (Physician A)

Most family caregivers assumed that retransplant would be certain should the patient want to pursue it. “He just wasn't getting any better, of course they talked about re-transplanting, if it means re-transplant, we gotta do what we gotta do” (ID 3). Only two family caregivers said that their daughters had previously expressed strong opposition to accepting another transplant, as reflected in the words of one recipient, “How many times do you get in line for something like that, how many times is it your turn again?”(ID 1), and “When the doctor suggested a re-transplant, she flatly refused, she said she would not do it, she would not take somebody else's chance away from them, she's sticking to that and we have to honor that” (ID 4).

Once recipients are deemed eligible for retransplant, the goal is to sustain them while they wait for a suitable organ. “When re-transplant is there we take a completely different tack. There's no discussion of end of life care…no dying patient type of discussions… they'll go to the ICU, we will do procedures, give them every medication we can come up with…”(Physician B). The prospect of retransplant removed most recipients or their family caregivers from considering other goals of care:

Once you start dangling re-transplant in front of them that becomes even a bigger issue…the ones on the re-transplant list, they don't wanna give up…they're going to hold on forever until you tell them they are not a candidate. (Physician B)

If it's decided that re-transplant is not an option instead of transitioning to discuss end-of-life issues, we are often dealing with angry people because they put all of the hope and their efforts into that one goal: re-transplantation…it takes them a while to come around and talk about end of life because they simply aren't ready. (Physician A)

Reluctance to Consider Palliative Care 

Until all treatment options were exhausted (or retransplant was ruled out), recipients and caregivers were reluctant to halt extraordinary treatment measures. “She's taking 95 pills a day plus antibiotics; she's been on IVs at home; she's taken us to the edge so many times, that we're not afraid of it anymore” (ID 1). Only when treatments were unsuccessful, recipients appeared to be suffering, or recipients were no longer competent to make their own decisions, did family and clinician caregivers become comfortable with the decision to stop aggressive therapies:

Only once we're in a discussion about attempting treatment that's not likely to be of any great benefit, or will certainly increase their risk of infection and possibly dying shortly after the treatment from some infectious complication, or a discussion about re-transplant (if we think that's possible or not), or about death and dying, is palliative care considered. (Physician A)

When families were asked how they made treatment decisions after the onset of chronic rejection, their responses were always couched in terms of respecting the recipients' wishes to keep going, and when recipients were no longer competent, to keep them comfortable. “Basically to honor her wishes and to make things as comfortable and as easy as they can be, that's my main concern” (ID 1). “I just hoped he would be comfortable, through the whole thing. I didn't think about how long or not long, just that he's comfortable” (ID 2).

The wife of a recipient who received hospice care during the last few months of his life recalled how the clinicians responded to the couple's decision for hospice care: “When we made the decision to come home and do hospice, we talked to the coordinator and the doctor…. Of course their first reaction was ‘No! bring him here.’ I asked if they can do anything different and they couldn't give him a ‘yes'… he said…'I'd really rather be at home for this’” (ID 2). One of the clinicians acknowledged the need for improvement in communication with recipients and family caregivers regarding treatment decisions after chronic rejection:

A minority of patients do not choose aggressive treatment, but it's a combination of our lack of good communication and willingness to take a negative predictive stand, basically tell people this is going to be futile, you're gonna die from this and recommend that they set limits. (Physician B)

Heightened Complexity of Family Caregiving 

Family members reported that caregiving duties heightened after the diagnosis of chronic rejection, particularly those related to monitoring and vigilance, “We had to watch for signs of declining and other complications” (ID 5). Family caregivers had to assume more responsibility for managing care, which typically became more complex as patients developed further complications and became more symptomatic, less able to tolerate activities, and became oxygen dependent. The wife of a deceased recipient expressed, “After he started with chronic rejection, I didn't have a life” (ID 2). A mother of a recipient illustrates the high level of caregiving duties after chronic rejection:

I don't know how anyone with [chronic rejection] can handle it themselves…it's hard enough for me to help [him]. It keeps 3 of us busy. We've been here at the hospital probably 19 out of 24 months…it's been rough for me personally and my husband…it's the three of us…with the ventilator, pulse ox and oxygen, alarms going off and the sounds…you don't get too much sleep…we are dealing with it but some days it's definitely too much. And now we're not seeing any real improvement whatsoever…it doesn't seem to be getting better at this point. (ID 5)

Based on the above analysis, we developed an algorithm to demonstrate how clinical management decisions were typically made after the onset of chronic rejection (Fig. 1).

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Discussion 

Although chronic rejection after lung transplantation is typically considered a pivotal turning point in a recipient's course of illness, we found that the meaning of, and responses to, chronic rejection by family and clinician caregivers was complex and influenced by the prospect of retransplantation. Both family and clinician caregivers acknowledged that as part of pretransplant preparation, there were clear discussions about the risk of chronic rejection and its impact on survival and quality of life. Nonetheless, the diagnosis of chronic rejection was devastating to both types of caregivers. During interviews, the caregivers often used the term “investment” to illustrate their efforts to prevent the recipient from chronic rejection and expressed how disappointing it was to see that their investment was not sustaining the recipients' quality of life.

Although inevitability and irreversibility of chronic rejection represented loss and mortality to family caregivers, its unpredictability rendered most family caregivers hope rather than despair. Because no one can predict who will stabilize or worsen after the onset of chronic rejection, both family and clinician caregivers hoped to achieve stabilization or remission and demanded trials of aggressive and often risky pharmacological treatments. The possibility of retransplantation only sparked more hope, which was maintained even as pulmonary function declined. It appeared that retransplantation produced a sense of security for most family and clinician caregivers. Families assumed, unless the recipients previously refused, that if all other attempts failed, retransplant was guaranteed, and clinicians considered retransplant a viable option, except for recipients with histories of nonadherence. We found that as long as retransplant was considered as an option for the recipient, combining palliative care and its potential benefits for improving recipients' quality of life were conspicuously missing from treatment discussions. As some authors24 have articulated, “the all-or-nothing approach to life-sustaining treatments such as organ transplantation sets up a false dichotomy” and makes pursuing palliative care incompatible with efforts to stabilize chronic rejection or retransplant, which has its own limitations.

From a recent survey of major U.S. lung transplant programs, Song et al.9 found that referrals to palliative care were typically delayed until recipients had exhausted all treatment options and were facing the end of life. As described by the caregivers in this study, caregivers' decisions to exhaust all treatment options were often motivated by the promises they had made to uphold recipients' wishes that everything possible be done to extend their life. Only when recipients made the personal decision to halt aggressive treatments, decline retransplant, or deteriorate to the point where they were no longer able to make their own decisions, would families and clinicians override recipients' wishes and decide to cease aggressive treatments.

As one of the clinicians acknowledged, communicating bad news was challenging to most transplant clinicians. The immediate reactions of transplant clinicians in this study to diagnosing chronic rejection were visceral (e.g., “my heart sinks”), illustrating their perception about chronic rejection, a harbinger of deterioration. Clinicians' trepidation about informing the recipient and family caregiver of the diagnosis perhaps encouraged them to focus more on aggressive treatments to slow its progression and stay optimistic, at the expense of exploring other goals of care. The process of clinical management decisions shown in Fig. 1 is such an example. Curtis et al.25 have described families' various needs and desires for hope and explicit prognostic information. In a model of an ideal therapeutic relationship, the patient and/or family regards the clinician as experienced, competent, and optimistic, and the clinician genuinely expects the treatments to help.26 Yet overextended positive expectancy of aggressive treatment and retransplant may obscure the purpose of palliative care and cause fear of abandonment.

The primary reason for reluctance to consider palliative care appeared to be the lack of understanding regarding what palliative care can offer, and the belief that palliative care is end-of-life care.9 The reluctance to consider palliative care in lung transplant recipients and families is challenging because they believe that death had been forestalled once by transplantation and this could happen again. For this group of recipients and family caregivers, a traditional transition model of care that waits for patients and/or caregivers to make the transition in care from curative to palliative27 would reinforce the notion that the goals of stabilizing chronic rejection and comfort cannot be pursued concurrently and that prognostic certainty28 is required to initiate palliative care. In this paradigm, the recipient and caregivers are expected to face and accept impending death to initiate palliative care, rather than having palliative care help them plan for the most appropriate care.29 Instead, a trajectory model of care27 may create an opportunity to find a common ground between the two poles of “keep-fighting” and “give-up” by introducing palliative care early as part of clinical management and providing pertinent services tailored to temporal and clinical changes in the recipient's illness trajectory and needs, as proposed in Fig. 1B. For example, palliative care consultations may be made for symptom management at the onset of chronic rejection while treatments to stabilize chronic rejection are concurrently offered. Another alternative model would be combining palliative care consultations at pretransplant to assist transplant candidates and caregivers with symptom management. This pretransplant palliative care consultation also may help reduce the reluctance to consider palliative care after the diagnosis of chronic rejection.

Our study has several limitations. The participants in this study were recruited from only one transplant program. The transplant program uses an aggressive surveillance protocol to detect and manage rejection and other posttransplant complications and performs retransplants (<10 retransplants annually). Thus, perspectives of caregivers from transplant programs that do not perform similar practice or retransplantation may differ. Finally, because family and clinician caregivers were the focus of this study, the perspectives of recipients were represented though the eyes of the caregiver participants. Nonetheless, our study findings provide an insight on how family and clinician caregivers perceived the onset of chronic rejection and how subsequent clinical management was shaped. Because lung transplant programs are rapidly growing nationally and worldwide, our findings may inform transplant programs to structure their postlung transplant care to better meet the needs of recipients and family caregivers as the recipients' conditions deteriorate.

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 Funding support was received from the University of Pittsburgh School of Nursing Center for Research and Evaluation.

PII: S0885-3924(10)00310-6

doi:10.1016/j.jpainsymman.2009.12.014

Journal of Pain and Symptom Management
Volume 40, Issue 2 , Pages 246-255, August 2010

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