Expansion of living donor liver transplantation (LDLT) is urgently needed to save the lives of sick and dying people on transplant waiting lists. However, there are many barriers and important ethical considerations, according to a consensus statement from the American Society of Transplantation.1
“Living donation, in general, raises a lot of ethical issues,” says Elisa J. Gordon, PhD, MPH, one of the authors of the consensus statement and professor in the department of surgery at the Center for Biomedical Ethics and Society at the Vanderbilt University Medical Center.
LDLT experts (e.g., transplant surgeons, transplant hepatologists, nurses, psychiatrists, psychologists, and ethicists) identified multiple ethical issues. One central ethical concern involves obstacles for living liver donors, who face the possibility of loss of job security, financial instability, and potential morbidity.
Many patients on the waiting list die because they cannot access a transplant, often caused by organ scarcity. “Living donor liver transplant is a really great option to increase the availability of organs for transplant,” Gordon asserts.
However, few centers perform LDLT.2 “There’s an opportunity for transplant programs to increase their practice in living donor liver transplantation,” Gordon says.
Patients may not know about living donors as an option. Even if they do, patients might struggle to find a suitable donor. Despite these considerable obstacles, there are positive developments with LDLT. “Some evidence shows that living and deceased donor transplant outcomes for recipients — graft survival and quality of life, for example — are comparable, if not even better, than with deceased donors,” Gordon notes. “That’s a really important finding to advance the push for increasing living liver donation.”
Some centers are reluctant to put the donor through the process, because donors are undergoing harm without any direct medical benefits for themselves. Providers are putting donors in harm’s way by administering anesthesia and performing surgery. In the context of LDLT, surgeons are removing a portion of the liver.
Still, even though donors receive no direct medical benefits, that does not mean there are zero benefits. “There may be psychosocial benefits. You are saving someone’s life — most commonly, a loved one,” Gordon offers.
Investigators have assessed long-term outcomes of LDLT. There are risks for the donor, including infections, hernia, and other complications.3,4 “The amount of risk to living liver donors is much greater than for living kidney donors,” Gordon notes.
Researchers also found complications can arise one year or longer after the donation occurred. “All of that information is vital in order for the potential living donor to make an informed decision on whether to undergo the process,” Gordon says.
The high morbidity rate is a central barrier to expansion of LDLT, says Lainie Friedman Ross, MD, PhD, dean’s professor and chair of the department of health, humanities, and bioethics at the University of Rochester School of Medicine and Dentistry. “Most of the injuries are minor,” Ross notes. “However, there have been some deaths and some serious short-term harms.”
For living liver donation to be ethical, the transplant community must address the potential donor’s vulnerabilities. “Potential donors can experience more than one type of vulnerability,” Ross says.
It is up to the living donor advocate team to help identify all vulnerabilities and help the potential donor address those, according to Ross. This ensures consent is voluntary and informed.
For example, a living donor may experience deferential vulnerability if a parent or older sibling asked her to donate. A living donor also might experience situational vulnerability if the potential candidate develops acute liver failure, and a decision must be made quickly without adequate time to fully reflect on and appreciate the risks and benefits. “Donors may also experience infrastructure vulnerability because of difficulty accessing follow-up care,” Ross adds.
The living donor advocate team should consist of clinicians who are separate from the clinicians caring for the potential candidate. When individuals consider becoming a living liver donor, they are patients themselves. “They need clinicians who are looking out for their medical and psychosocial well-being, and not focused on how sick the candidate may be,” Ross says.
Donors may be unable to make the decision in tight time frames, such as in acute cases where the candidate really needs a liver in the next 24 hours. “There are some potential donors who just jump at the opportunity to donate, and they’ll do it with no question about it. Others are wringing their hands over what to do,” Gordon says.
Gordon has interviewed liver donors about their decision-making. One of the biggest factors in donors’ decision-making was the fact the liver usually grows back. “There’s a risk that it won’t. But that gave donors a lot of peace of mind,” Gordon reports.
Considering all the uncertainties and complexities of LDLT, the goal is for donors to be adequately informed in a comprehensible way. Gordon was lead author on a study in which living donors said they were well-informed, but they actually demonstrated inadequate comprehension about donation.5 Gordon conducted an international systematic literature review and found that donors reported knowledge gaps on risks, and unmet information needs.6 “Overall, there’s some question about whether people are really well-informed enough about the risks and benefits of living liver donation,” Gordon notes.
There are two important questions: How well are potential donors informed about these risks? How well do they really understand what is about to happen? Providers must ensure the donor candidate is competent to make the decision, and that he or she receives all the information requested or needed. “Information that healthcare providers think is important to disclose might not be the information that donors need,” Gordon explains.
Donor candidates need to appreciate what donation means in terms of its effect on their life. For example, the transplant team may tell the donor there is a certain risk of developing a hernia, but what does that mean? What is like to live with a hernia? How is it treated? Does it require surgery? How does that affect quality of life?
Finally, some centers lack the surgical expertise. “It takes a lot of training, and there really aren’t any training programs on living liver donor transplantation,” Gordon says.
Providers must perform enough procedures to gain enough expertise to perform LDLT. “When physicians are going through fellowship, for example, there needs to be greater opportunity for training in LDLT,” Gordon argues.
REFERENCES
1. Pillai A, Verna EC, Parikh ND, et al. Financial, policy and ethical barriers to the expansion of living donor liver transplant: Meeting report from a living donor liver transplant consensus conference. Clin Transplant 2023; Mar 7:e14955. doi: 10.1111/ctr.14955. [Online ahead of print].
2. Lentine KL, Tanaka T, Xiao H, et al. Variation in adult living donor liver transplantation in the United States: Identifying opportunities for increased utilization. Clin Transplant 2023; Feb 2:e14924. doi: 10.1111/ctr.14924. [Online ahead of print].
3. Olthoff KM, Merion RM, Ghobrial RM, et al. Outcomes of 385 adult-to-adult living donor liver transplant recipients: A report from the A2ALL Consortium. Ann Surg 2005;242:314-323.
4. Abu-Gazala S, Olthoff KM. Status of adult living donor liver transplantation in the United States: Results from the adult-to-adult living donor liver transplantation cohort study. Gastroenterol Clin North Am 2018;47:297-311.
5. Gordon EJ, Rodde J, Skaro A, Baker T. Informed consent for live liver donors: A qualitative, prospective study. J Hepatol 2015;63:838-847.
6. Gordon EJ, Daud A, Caicedo JC, et al. Informed consent and decision-making about adult-to-adult living donor liver transplantation: A systematic review of empirical research. Transplantation 2011;92:1285-1296.
Living donor liver transplantation could save more lives, but a lack of public awareness about the procedure, the lack of qualified surgeons available to perform the operation, and fears about the donor's long-term health all are obstacles to expansion.
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