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Ethical Issues Surrounding Bridge Strategies to Pediatric Lung Transplant in Cystic Fibrosis: Case Series and Suggested Process Framework


Terry L. Noah, MD
University of North Carolina

Arlene Davis, BS, JD
University of North Carolina

Debra Boyer, MD
Harvard Medical School

Elisabeth Potts Dellon, MD, MPH
University of North Carolina



Although the incidence for pediatric lung transplantation is decreasing worldwide, the need is still present for some pediatric CF patients with end stage lung disease. While these patients await their 'donor offer' and are hopeful for the promise of a longer and an improved quality of life, many deteriorate further. Such decline necessitates open discussions regarding the application of advanced life support such as ECMO or consideration for placement of external oxygenators that may allow a patient to be bridged to transplant. Despite initial experience resulting in poor outcomes with ECMO bridging to transplant, recent data suggest that this strategy is appropriate in selected cases [2]. Nonetheless, the technical complexities, involvement of multiple caregivers and disciplines, and potential for fatal complications from ECMO and other life-saving approaches remain extremely high [3]. There is scant information published and there are no established guidelines for the medical team and caregivers to consider in these dire circumstances.

The major ethical challenges associated with bridge strategies to pediatric lung transplantation include: (1) timing and adequacy of informed consent, (2) ethical concerns about unproven and potentially painful, life-prolonging therapies in children and (3) management of end of life care and the high likelihood for the need to withdraw the bridging therapies should transplant no longer be an option. These decisional challenges require consideration for variations in disease comorbidities, family members' and patients' level of education, treatment goals, personal values and philosophical outlooks; many of which can change over time. As well, the ethical framework must also account for variation among team members in expertise, experience, values and appraisals of ethical permissibility.

As stewards of responsible decision-making, it is our duty to address end-of-life decisions with unity, concern and compassion. Similar processes are currently evolving at many transplant centers that care primarily for adult recipients. We suggest that pediatric lung transplant centers convene as a community to formulate such a framework applicable to children, since the frequency of transplant is low and the communication issues are complex.

Substantive discussions must be had so that as a group, guidelines may be formulated that delineate processes to inform the care team, patient, and family decisions about options for bridging to transplant and related care concerns. A guideline, as such, would outline approaches to obtaining informed consent, ethical decision making and team communication for pediatric lung transplant candidates. The guidelines would optimally include: (1) a general discussion of bridging methods that discuss ECMO and other transthoracic oxygenator devices with the attending Pulmonologist and Transplant Coordinator at time of consideration for recipient candidacy, and (2) such that at the time of any patient's acute deterioration, a care conference with Pediatric Pulmonology, Cardiothoracic Surgery, PICU/ECMO teams, PICU nursing and Clinical Ethicist to discuss candidacy for bridging modalities can be held if the technology is thought to be imminently required, including rehabilitation goals for re-activation of listing if the patient needs to be de-activated temporarily and (3) frequently scheduled "check-ins" with the family after bridge support is initiated, allowing team members to realistically reassess goals, anticipate and/or address complications and approach these difficult situations with humanity, sympathy and benevolence. ■

Disclosure Statement: The authors have no conflicts of interest to disclose.


References:

  1. Lancaster TS et al. J Heart Lung Transplant 2017;36:520-28.
  2. Toprak D et al. Pediatr Pulmonol 2017;52:360-66.
  3. Truog RD et al. Lancet 2015;3:597-98.
  4. Chaet D. AMA Journal of Ethics 2016;18:45-48.



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