The Role of the Family in Deceased Organ Procurement: A Guide for Clinicians and Policymakers

Abstract

Families play an essential role in deceased organ procurement. As the person cannot directly communicate his or her wishes regarding donation, the family is often the only source of information regarding consent or refusal. We provide a systematic description and analysis of the different roles the family can play, and actions the family can take, in the organ procurement process across different jurisdictions and consent systems. First, families can inform or update healthcare professionals about a person’s donation wishes. Second, families can authorize organ procurement in the absence of deceased’s preferences and the default is not to remove organs, and oppose donation where there is no evidence of preference but the default is to presume consent; in both cases, the decision could be based on their own wishes or what they think the deceased would have wanted. Finally, families can overrule the known wishes of the deceased, which can mean preventing donation, or permitting donation when the deceased refused it. We propose a schema of 4 levels on which to map these possible family roles: no role, witness, surrogate, and full decisional authority. We conclude by mapping different jurisdictions onto this schema to provide a more comprehensive understanding of the consent system for organ donation and some important nuances about the role of families. This classificatory model aims to account for the majority of the world’s consent systems. It provides conceptual and methodological guidance that can be useful to researchers, professionals, and policymakers involved in organ procurement.

Governance quality indicators for organ procurement policies

“…Indeed, individuals’ explicit refusal to donate, however it is expressed, will likely be respected in both opt-in and opt-out countries (following national and international laws and ethical guidelines [ 8 ]. Likewise, an explicit consent to donate will most likely be respected under both opt-in and opt-out policies (even though relatives may be allowed to overrule or veto the deceased’s decision under any of those two policies) [ 5 ]. Therefore, the real difference between opt-in and opt-out policies does not rely on the deceased’s decision–i.e., consent or refusal–but on the default course of action that applies when the deceased failed to express any decision : organs can be recovered under opt-out policies and they cannot be recovered under opt-in policies.…”

“…), next-of-kin’s role in OP decision-making, and the default rule (retrieving or not retrieving the organs) when no preference is available. Jurisdictions vary regarding the means of expressing individuals’ preferences and the authority of the family [ 5 ]. In Europe, most countries have implemented an opt-out ( presumed consent ) model, while some countries retain the opt-in ( explicit consent ) model.…”

Family discussions and demographic factors influence adolescent’s knowledge and attitude towards organ donation after brain death: a questionnaire study

“…For families, the burden of decision making in a situation of personal grief is high [ 14 ]. Several modifiable but also non-modifiable factors may influence this decision and special skills of the requester are necessary to prevent unnecessary loss of organs [ 15 – 17 ]. Besides the legal situation, the practice in a country may also influence the role of family decisions in the organ donation process [ 17 ].…”

“…Several modifiable but also non-modifiable factors may influence this decision and special skills of the requester are necessary to prevent unnecessary loss of organs [ 15 – 17 ]. Besides the legal situation, the practice in a country may also influence the role of family decisions in the organ donation process [ 17 ]. Systems that do not delegate the burden of this decision to the grieving families may, in our opinion, provide a better framework to increase organ donation rate; however, this topic is heavily discussed worldwide and a change in the system has a huge legal, ethical and practical impact.…”

A Study on the Impact of Chinese Family Culture on Citizens' Voluntary Organ Donation

“…Traditional culture is one of the main factors that affect organ donation [2,3]. Family members' attitude towards organ donation directly affects the success of potential organ donation [4][5][6][7][8].…”