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

Song, Mi-Kyung; DeVito Dabbs, Annette J.; Studer, Sean M.; Arnold, Robert M.; Pilewski, Joseph M.

doi:10.1016/j.jpainsymman.2009.12.014

« Previous Next »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
- School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
- Address 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
- School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
Sean M. Studer, MD
- 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
- 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
- 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.

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.