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Breathing room: Making space for palliative care in lung transplant programs

Siyuan Cao, MD
Siyuan Cao, MD

Fei is four years post bilateral lung transplant for familial idiopathic pulmonary fibrosis. Her posttransplant course has been complicated by ischemic bronchitis with pseudomembranous involvement, stenosis requiring serial bronchoscopies and stenting, and a persistent mold infection refractory to medical therapy. At her recent posthospital discharge clinic visit, she expressed feeling demoralized by her persistent dyspnea, frequent hospitalizations, and the emotional toll on her caregivers.

Riddhi Upadhyay, MD, FCCP
Riddhi Upadhyay, MD, FCCP

Fei’s case underscores the need for palliative care integration into transplant clinics to optimize goal-concordant care, manage symptoms, and provide multidisciplinary support for patients and caregivers. In 2024, 3,340 lung transplants were performed in the United States, reflecting a 10.4% increase.1 However, median posttransplant survival remains only 6.7 years, the lowest among all solid organ transplants.2 Long-term survival challenges, including infections, graft dysfunction, and immunosuppression-related complications, impose significant physical and emotional burdens on patients and caregivers. In this context, palliative care should be incorporated into standard transplant care, much like how cardiopulmonary rehabilitation is routinely encouraged to support physical function both before and after a transplant. 

B. Corbett Walsh, MD, MBE
B. Corbett Walsh, MD, MBE

Palliative care remains an underutilized resource in lung transplantation. Surveys of lung transplant programs reveal several deterrents to palliative care referral, including perceived discordance between palliative care goals and aggressive medical therapy and patients’ fears of abandonment by the transplant team.3,4 These barriers stem from outdated perceptions of palliative care as solely end-of-life care, rather than its broader purpose of enhancing quality of life through patient-centered approaches. In lung transplantation, palliative care can offer valuable support in identifying and managing physical and psychosocial symptoms and should be offered concurrently as transplant teams pursue goal-concordant lifesaving disease-specific therapy.

The literature on optimal palliative care integration in lung transplantation is limited. Existing research, primarily consisting of retrospective studies and survey data, has suggested improved symptom control in pretransplant patients, but data on posttransplant outcomes are scarce. Additional high-quality studies can help determine how patients like Fei can benefit from palliative care with regard to symptom management, quality of life, and health care utilization.

Ideally, palliative care collaboration should begin in the pretransplant period.5 The International Society for Heart and Lung Transplantation’s 2021 consensus document recommends considering concomitant palliative care referral during lung transplant evaluation to ensure goal-concordant care.6 Early and close collaboration can alleviate fears of abandonment by patients, families, and staff should patients no longer be transplant candidates. Furthermore, pretransplant discussions with palliative care can promote continuity of care throughout the transplant journey. Normalizing palliative care involvement from the outset can also reduce stigma and facilitate acceptance of palliative care referrals made during episodes of disease progression.

By addressing the complex physical, emotional, and psychosocial needs of transplant recipients throughout their transplant journey, palliative care can complement the intensive medical management already offered by the multidisciplinary transplant team. This holistic approach not only has the potential to enhance patient, caregiver, and provider experiences but may also contribute to improved posttransplant outcomes. Moving forward, transplant centers should consider additional research into palliative care integration to ultimately benefit the growing population of lung transplant recipients.


References

1. Organ transplants exceeded 48,000 in 2024; a 3.3 percent increase from the transplants performed in 2023. Organ Procurement & Transplantation Network. Accessed February 12, 2025.

2. Christie JD, Raemdonck DV, Fisher AJ. Lung transplantation. N Engl J Med. 2024;391(19):1822-1836.

3. Colman RE, Curtis JR, Nelson JE, et al. Barriers to optimal palliative care of lung transplant candidates. Chest. 2013;143(3):736-743.

4. Song M-K, De Vito Dabbs A, Studer SM, Arnold RM. Palliative care referrals after lung transplantation in major transplant centers in the United States. Crit Care Med. 2009;37(4):1288-1292.

5. Wentlandt K, Weiss A, O’Connor E, Kaya E. Palliative and end of life care in solid organ transplantation. Am J Transplant. 2017;17(12):3008-3019.

6. Leard LE, Holm AM, Valapour M, et al. Consensus document for the selection of lung transplant candidates: An update from the International Society for Heart and Lung Transplantation. J Heart Lung Transplant. 2021;40(11):1349-1379.