Living donation by persons with certain fatal diseases white paper
Ethics committee white paper (PDF - 286 K; 12/2017)
Summary and Goals
The purpose of this white paper is to provide an ethical analysis of living donation (kidney or liver segment) by persons living with life-limiting illness who want to be living organ donors. The paper concludes that living donation by clinically eligible individuals with life-limiting illnesses is, conceptually, an ethically sound practice, and that the determination of eligibility for living donation should be made by the individual’s healthcare team.
Transplant hospitals may be reluctant to consider living donation by persons with certain life-limiting illnesses because:
- The individual may not meet standards currently required for living organ donation by transplant hospitals or regulatory guidelines because of a having a life-limiting illness.
- The individual may be at increased risk of complications or death after donation related to their life-limiting illness.
- Transplant hospitals must report living donor deaths to the OPTN or other regulatory authorities.
The goals of this white paper are to:
- Identify and address the ethical issues pertaining to living organ donation by persons with certain life-limiting illnesses.
- Identify the potential benefits and harms of living organ donation to persons with certain life-limiting illnesses.
- Provide an ethical analysis for the transplant community to consider if they decide to adapt, revise, or develop polices related to living organ donation to accommodate persons with certain life-limiting illnesses.
This white paper will address the scenario of an individual:
- Who wishes to be a living organ donor.
- Who has a progressive, incurable, chronic disease that is life-limiting (e.g., patients recently diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Multiple Sclerosis (MS)). This white paper does not define or delineate the specific clinical criteria of life-limiting illnesses that would enable individuals with life-limiting illnesses to become living donors. Rather, the Ethics Committee recognizes that healthcare providers are in the optimal position to make the determination of whether an individual with life-limiting illnesses is clinically eligible for living donation on a case-by-case basis.
- Whose life-limiting illness (at the point of donation) would not put the individual at unreasonably high risk for an adverse outcome after donating, as determined by the individual’s healthcare team at the transplant hospital.
- Whose risks of living donation, once the individual is deemed eligible for living donation by the transplant hospital, are evaluated mutually through a shared decision making process between the transplant team and the potential living organ donor.
- Whose life-limiting illness has not led to substantial reduction in the medical quality of the organ to be recovered and transplanted.
The Ethics Committee (the Committee) reviewed and considered the limited published research and anecdotal reports on living organ donation by persons with certain life-limiting illness, and the reasons transplant hospitals may be reluctant to consider persons with such illnesses as living organ donors. Living donation by persons with certain life-limiting illnesses is not specifically prohibited under current OPTN Policy. The Committee considered the ethical principles guiding living donation, and concluded that persons with certain life-limiting illness should not be precluded from donation if those individuals can provide informed consent and meet current required informed consent and psychosocial and medical evaluation criteria required by the OPTN. The Committee understands that there may likely be a need for other OPTN Committees, in consultation with the transplant community, patients and their families, to propose and establish new and additional informed consent and psychosocial and medical evaluation criteria to adequately evaluate and protect potential living donors with certain life-limiting illnesses.
Based on this analysis, the OPTN could:
- Revise and expand criteria for living donation among those with life-limiting illnesses.
- Recognize the ethical justification of honoring the autonomy of persons with certain life-limiting illnesses as potential living organ donors.
- Support transplant hospitals and potential living donors by reducing disincentives and impediments to organ donation by persons with certain life-limiting illnesses.
- Make OPTN regulatory oversight of transplant hospitals reasonable when individuals with life-limiting illnesses die from their underlying disease, and not from the living donation process itself.
OPTN Committees could establish explicit guidelines, propose new policy or amend existing policy to facilitate living organ donation by persons with certain life-limiting illnesses.