BWH Clinical Ethics Case Review, a monthly newsletter, is published by the BWH Office of Clinical Ethics. Each issue highlights a BWH case that posed an ethical problem for a patient, family members and/or caregivers, leading to an ethics consultation and BWH Ethics Committee discussion. Please note that because cases are based on actual ethics consultations, some details may have been altered in order to protect patient privacy and confidentiality.
This issue of the BWH Clinical Ethics Case Review highlights a case in which a patient was reluctant to undergo life-saving therapies after developing complications from lung transplantation. There were differences of opinion among team members and the family as to whether it was appropriate to try to encourage the patient to accept further treatment.
The patient, an older individual, developed serious complications requiring ICU-level treatment within the first year following lung transplantation. During her hospital stay, she began expressing a desire to go to hospice rather than to continue aggressive life-sustaining therapy. Her prognosis was somewhat uncertain. Some clinicians believed that there was the possibility of good recovery and that, having been fortunate to receive a scarce resource, she had an obligation to continue with treatment, while others believed recovery was unlikely, and therefore felt her request to de-escalate treatment was reasonable.
The family wanted her to continue treatment. An ethics consultation was requested by the team to help address these conflicts around treatment and goals of care.
This case illustrates the tension that can arise between the ethical principles of autonomy and distributive justice. As a society, we place high value on autonomy or “self-rule” – the right of patients to make health care decisions based on their own wishes and goals, free from coercion or inducement. At the same time, tenets of distributive justice call for making the best use of scarce resources.
Transplantable organs are in chronic short supply—four times as many people await organs than receive them. While awaiting a lung, heart, kidney or liver transplant, many patients suffer an extremely poor quality of life or die. From a justice perspective, knowing that many others were denied the organ may create a moral responsibility for organ recipients to do everything possible to maximize the life span of the gift they receive. Failing to do so—and possibly hastening death as a result—may have ramifications for the transplant program itself. High mortality rates in the first year after transplant can put a hospital program at risk of termination, thereby reducing other patients’ access to this procedure.
Prior to a transplant, when the patient’s candidacy is being evaluated, justice considerations prevail. “Because the organ supply is so limited and the offering of organs is based on the generosity of patients and families, proper stewardship of these organs is an ethical obligation for…organ recipients” (Bramstedt, 2006). For this reason, it is common practice to ask lung recipients to refrain from smoking and other harmful behaviors after their transplant surgery. Furthermore, they are carefully screened to address questions of psychologic reserve and robustness of their social support systems.
Since refusal of post-transplant treatments can similarly compromise transplant success, it is reasonable to consider a willingness to persevere through such treatments as another expectation for transplant candidacy.
“Preventable graft loss must be protected against, and factors that foster preventable graft loss…must be proactively contemplated when patients are reviewed as potential transplant candidates” (Bramstedt, 2006).
After a transplant, respect for autonomy assumes more weight. While it may be appropriate to remind the patient of a prior commitment to persevere in the face of hardship, ultimately the patient has the right to change his or her mind.
No matter how carefully and comprehensively the recovery process is explained up front, the burdens of the actual experience may exceed the patient’s expectations and ability to endure. “Clinicians should work with lung recipients and their families, particularly their caregivers, to find ways to sustain or increase (post-transplant improvements) by optimizing adherence, symptom management and complication prevention” (Rosenberger et al., 2012). If, despite these interventions, the patient still desires to discontinue treatment, this request should be honored.
In this case, the ethics consultation led to the conclusion that the team should respect the patient’s wishes to discontinue life-sustaining treatment and instead receive hospice care.
In a subsequent review of this case, the Ethics Committee agreed that it is appropriate to have a conversation with lung transplant candidates about the precious nature of donated lungs, an exceptionally scarce resource. It should be clearly explained that selection for lung transplant carries with it a moral duty to accept aggressive treatments for complications, especially during the first year. This should be understood as a strong hope and expectation, but not a requirement, recognizing that few patients will fully grasp beforehand the challenges they may subsequently encounter.
Bramstedt, K.A. “Transfusion Contracts for Jehovah’s Witnesses Receiving Organ Transplants: Ethical Necessity or Coercive Pact?” J Med Ethics. 2006;32(4):193-195.
Rosenberger, Emily et al. “Psychosocial Issues Facing Lung Transplant Candidates, Recipients and Family Caregivers.” Thorac Surg Clin. 2013;22(4):517-529.
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