Advance care planning after lung transplantation: a case of missed opportunities

Abstract

After lung transplantation, recipients are regularly evaluated by the transplant team and often require multiple hospitalizations. The primary focus of care during this time is on detecting and treating complications and may not necessarily include advance care planning discussions. This focus may leave clinicians unaware of the recipient's treatment preferences and place a burden on families trying to decide whether to undergo or forgo life-sustaining treatment when the recipient's medical condition deteriorates. We report the case of a woman with bronchiolitis obliterans who was admitted to the transplant center 37 times and died in the intensive care unit. Although progressive deterioration of her medical condition was well documented, her medical records revealed no evidence of advance care planning discussions with the patient and family. Incorporating timely advance care planning and integrating palliative care in the ongoing posttransplant clinical management may benefit patients, families, and clinicians as recipients approach the final stage of their illness.

Psychiatric Aspects of Organ Transplantation in Critical Care

“…This is especially relevant for transplant recipients as early identification and treatment may prevent worse complications or even loss of life. This goal of sustaining and extending life coupled with the tremendous commitment and effort put forth by the team, patient, and caregivers to get to and through transplant creates an environment in which dialogues about advanced directives are not often initiated [83]. …”

“…Chronic rejection of the lung transplant occurs in 60–75% of recipients by 5 years post-transplant and is the leading cause of death among recipients [83]. The clinical manifestation of chronic rejection is the bronchiolitis obliterans syndrome and patients with this lesion will have frequent hospitalizations often requiring mechanical ventilation in the ICU [84].…”

“…The clinical manifestation of chronic rejection is the bronchiolitis obliterans syndrome and patients with this lesion will have frequent hospitalizations often requiring mechanical ventilation in the ICU [84]. For lung transplant recipients, an ICU admission is associated with significant morbidity and mortality – only 43% will be alive one year later and most will die in the ICU [83, 84]. …”

“…Optimally these discussions should be undertaken when the situation is not dire, potentially when the patient is not ill or hospitalized. Unfortunately these opportunities are often missed [83] and the ICU and transplant teams may need to consider discussions of palliative care and end-of-life decisions while the patient is critically ill.…”

Hoping for a miracle: supporting patients in transplantation and cardiac assist programs

“…Delaying palliative medicine until the end of life, however, has the potential to severely impact quality of life throughout a patient's illness. Also, time is precious and some patients lose decision-making capacity as their disease progresses, making them unable to participate in care planning [13]. Healthcare teams should take advantage of the time they have to define care plans with their patients who can discuss their healthcare values so that the treatment provided is in accordance with their goals, preferences, and best interests.…”