Live liver donors’ information needs: A qualitative study of practical implications for informed consent

Abstract

Background As live donor liver transplantation is increasingly used to expand the donor pool, concerns remain regarding ensuring live liver donors' informed consent. This study assessed donors' information preferences and perceptions of informed consent. Methods Cognitive interviews were conducted with donors by telephone about how knowledge items in a new survey instrument were material to informed consent, between November 2011 and April 2012. Thematic analysis was used to analyze qualitative data until reaching saturation. Results Twenty-nine liver donors participated (85% participation rate). Donors commonly reported being unable to understand or retain much information disclosed during education. Donors preferred information about major donation risks, e.g., death, and minor risks that would likely affect their daily lives, e.g., wound infection. Donors expressed less interest in information about their rights, confidentiality, or the medical procedure. Donors' preferences varied regarding statistical information. Many perceived the disclosure of risk information to be excessive, and rationalized risks believed to be uncommon or not serious. Donors were disappointed by the brevity of the post-donation hospital stay. Conclusions Our findings suggest that the complexity and volume of disclosed information during evaluation was difficult for donors to adequately comprehend. Donors' lack of appreciation for the seriousness of complications may undermine their ability to provide informed consent. Future research should develop effective information delivery methods to enhance informed consent.

Long-term risks after kidney donation: how do we inform potential donors? A survey from DESCARTES and EKITA transplantation working groups

“…In conclusion, there seems to be a large variation in the knowledge and attitudes of transplant professionals in Europe regarding which possible long-term risks should be discussed with potential kidney donors, how these risks should be disclosed and how the written information should be used. It is likely that potential living donors would like to receive detailed information regarding potential future risks [ 34 ]. Providing information to potential donors is complicated and often demands an individual approach and adequate time and resources.…”

A liver for a kidney: Ethics of trans-organ paired exchange

“…The ethical requirement to obtain informed consent is important in any medical intervention, but it is particularly so in the case of living organ donations, a procedure that offers no medical benefits to the donors. 40 Of course, the need for appropriate disclosure is the same for trans-organ exchanges and cases of same-organ exchanges, or the simple case of living donation. 39 An adequate disclosure in the context of trans-organ exchanges requires that clinicians provide information that could make a difference to whether donors and recipients wish to participate in such exchanges and that they do so in ways that do not overwhelm donors and recipients.…”

“…19 Consent is appropriately informed when a capacitated or competent individual, who receives adequate disclosures and understands what has been disclosed, voluntarily consents to the procedure. [40][41][42] Like in all living organ donations, donors and recipients should be informed of possible outcomes, short and long-term risks, potential health and psychological benefits, financial costs, as well as alternative treatment options available to the recipient. 40 Of course, the need for appropriate disclosure is the same for trans-organ exchanges and cases of same-organ exchanges, or the simple case of living donation.…”

“…39 An adequate disclosure in the context of trans-organ exchanges requires that clinicians provide information that could make a difference to whether donors and recipients wish to participate in such exchanges and that they do so in ways that do not overwhelm donors and recipients. 40 Of course, the need for appropriate disclosure is the same for trans-organ exchanges and cases of same-organ exchanges, or the simple case of living donation. [40][41][42] Like in all living organ donations, donors and recipients should be informed of possible outcomes, short and long-term risks, potential health and psychological benefits, financial costs, as well as alternative treatment options available to the recipient.…”

“…40 Of course, the need for appropriate disclosure is the same for trans-organ exchanges and cases of same-organ exchanges, or the simple case of living donation. [40][41][42] Like in all living organ donations, donors and recipients should be informed of possible outcomes, short and long-term risks, potential health and psychological benefits, financial costs, as well as alternative treatment options available to the recipient. But clinicians will need to pay particular attention to information regarding the unequal risks imposed on the donors in trans-organ donation exchanges.…”