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Donation Starts With a Decision

The Role of the Individual and Family in Organ Donation

Gunderson, Susan, MHA1

doi: 10.1097/TP.0000000000002623
Commentaries
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1 LifeSource, Organ Procurement Organization, Minneapolis, MN

Received 28 December 2018.

Accepted 30 December 2018.

The author declares no funding or conflicts of interest.

Correspondence: Susan Gunderson, MHA, LifeSource, 2225 West River Road North, Minneapolis, MN 55411. (sgunderson@life-source.org).

Once you make a decision, the universe conspires to make it happen.

—Ralph Waldo Emerson

Increasing the consent rate, both through the first-person authorization and family consent, provides perhaps the most significant opportunity to advance deceased organ donation in countries with some level of established donation programs. While in many countries, the primacy of an individuals’ decision to authorize organ donation is well documented, the participation of the family and family system play an essential role in end-of-life care and decision-making for donation and is less fully understood.

The article by Delgado et al1 in this issue of Transplantation is an important contribution to provide a framework for the discussion of definitions for legislative structures and family roles within the legal construct. Particularly insightful is the crosswalk between laws defining the role of the individual and families in the consent process and the reported actual practices governing donation decisions. Examining and contrasting legal frameworks for donation with perceived actual practices through personal interviews reveals striking inconsistencies and ambiguities between local regulations and practices, an important caution as policymakers consider revising legal constructs with the premise that increased donation rates will follow.

This study invites a call for standardization of nomenclature around definitions for consent and authorization as well as a need to collect better data on practices to understand the impact of laws on donation activity. In the United States, for example, the right of an individual to authorize organ donation has been well established in law for decades and strengthened in the 2006 update to the Uniform Anatomical Gift Act,2 and yet published data suggest wide variability remains in organ procurement organization practices in upholding and honoring donor’s decisions.3

Through national- and state-based efforts, the US public education efforts have emphasized a call for individuals to register as organ donors via registries, primarily through driver license application but increasingly through online, mobile-friendly registries.4 Such registrations carry a message that the first-person authorization is legal authority for donation and cannot be overturned by any other individual. With an obligation to honor a person’s legal decision, the organ procurement and transplant community should continue to move toward universal acceptance of the first-person authorization. Through effective communications with families and coordinated end-of-life care, donation can be facilitated even in the face of family hesitancy or resistance.5 With national registry rates surpassing 58%,4 the procurement community should continue to work toward consistency in honoring the donor’s decision in a manner that fully respects and upholds support for the relatives and family.

Recent legal changes to introduce presumed consent in many countries have been to some extent driven by the assumption that opt-out laws lead to higher donation rates, often citing the Spanish experience as a proof. Such approaches have been taken despite responses from Spanish experts that the type of consent is insignificant in effecting donation activity.6 The Netherlands is set to implement opt-out laws in 2020,7 while an early report from Wales shows gains have been made in donation because presumed consent legislation was implemented in 2015, describing the increases as a “cause for optimism” while falling short of attributing gains to the legal change to presumed consent.8 Additionally, policymakers in many states in the United States have introduced, without success, legislation to change the US-based opt-in system to opt out.9

A structured and standardized approach to donation consent systems, both legal and in practice, provides a framework to study new approaches to improving donation authorization rates. The recommendations of Delgado et al1 should encourage and stimulate additional research on the roles and impacts of families in the donation ecosystem.

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REFERENCES

1. Delgado J, Molina-Pérez A, Shaw D, et alThe role of the family in deceased organ procurement. A guide for clinicians and policy makers. Transplantation. 2019;103:e112–e118.
2. National Academies of Sciences, Engineering, and Medicine. Opportunities for Organ Donor Intervention Research: Saving Lives by Improving the Quality and Quantity of Organs for Transplantation. 2017:Washington, DC: The National Academies Press; 73–76.
3. Chon WJ, Josephson MA, Gordon EJ, et alWhen the living and the deceased cannot agree on organ donation: a survey of US organ procurement organizations (OPOs). Am J Transplant. 2014;14:172–177.
4. Donate Life America Annual Report 2017. Available at https://www.donatelife.net/wp-content/uploads/2016/06/2017_AnnualUpdate_singlepages_small.pdf. Accessed December 28, 2018.
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8. Organ donation consent rates in Wales highest in the UK: New data shows for the first time, a significant increase in the donation after brain stem death (DBD) consent rates in Wales (88.2%) when compared to England (73.3%). Available at https://gov.wales/newsroom/health-and-social-services/2018/consent-rates/?lang=en. Accessed December 28, 2018.
9. Leins CShould the government decide if you’re an organ donor? Wales and other countries have adopted an organ donation system that’s seen by some as a solution to the donor deficit in the U.S. Available at https://www.usnews.com/news/articles/2016-02-12/presumed-consent-and-americas-organ-donor-shortage. Accessed December 28, 2018.
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