One of the most common reasons given for the refusal to donate in both the United States and the United Kingdom is that the potential donor, in his lifetime, said he did not want to be a donor. This objection has not always been given by families refusing to donate and appears to be an unintended consequence of donation strategies based on public education, donor registries, and first-person consents. A history of the objection is given, possible meanings are explored, and strategies for dealing with it are suggested.
References
1.
DeJongWFranzHGWolfeSM. Requesting organ donation: An interview study of donor and nondonor families. Am J Crit Care.1998;7(10):13–23.
2.
VerbleMWorthJ. Fears and concerns expressed by families in the donation discussion. Prog Transplant.2000;10(1):48–55.
3.
VerbleMBowenGRKayNMitoffJShaferTJWorthJ. A multiethnic study of the relationship between fears and concerns and refusal rates. Prog Transplant.2002;12(3):185–190.
4.
RodrigueJRScottMPOppenheimAR. The tissue donation experience: A comparison of donor and nondonor families. Prog Transplant.2003;13(4):258–264.
5.
SqueMPayneSClarkJM. Gift of life or sacrifice? Key discourses to understanding organ donor families' decision-making. Mortality.2006;11(2):117–132.
6.
AnkerAEFeeleyTH. Why families decline donation: The perspective of organ procurement coordinators. Prog Transplant.2010;20(3):239–246.
7.
VolkMLUbelPA. Response: The impracticality of overriding family rejection of donation [editorial]. Transplantation.2008;86(11):1631–1632.
The Gallup Organization, Inc.Attitudes and Opinions of the American Public Towards Kidney Donations. Princeton, NJ: The National Kidney Foundation; 1983.
11.
The Gallup Organization, Inc.The U.S. Public's Attitudes Toward Organ Transplants/Organ Donation. Princeton, NJ: The American Council on Transplantation; 1985.
12.
HarrisRJJasperJDShanteauJSmithSA. Organ donation consent decisions by the next of kin: An experimental simulation approach. In: ShanteauJSHarrisRJ, eds. Organ Donation and Transplantation: Psychological and Behavioral Factors. Washington, DC: American Psychological Association; 1990:13–24.
13.
ProttasJ. The Most Useful Gift: Altruism and the Public Policy of Organ Transplants. San Francisco, CA: Jossey-Bass; 1994.
14.
HessingDJ. The social dilemma of organ donation: Opting in or out—is that the question? In: ShanteauJSHarrisRJ, eds. Organ Donation and Transplantation: Psychological and Behavioral Factors. Washington, DC: American Psychological Association; 1990:13–24.
15.
The Gallup Organization, Inc.The U.S. Public's Attitudes Toward Organ Transplants/Organ Donation. Boston, MA: The Partnership for Organ Donation; 1993.
16.
SiminoffLAArnoldRMCaplanALVirnigBASeltzerDL. Public policy governing organ & tissue procurement in the United States. Results from the National Organ and Tissue Procurement Study. Ann Intern Med.1995;123(1):10–17.
17.
Gomez MarineroPSantiagoCMoninoA. The donation interview. In: MatesanzRMirandaB. Organ Donation for Transplantation: The Spanish Model. Madrid, Spain: Organizacion Nacional de Transplantes; 1996:106.
18.
WendlerDDickertN. The consent process for cadaveric organ procurement: How does it work? How can it be improved?JAMA.2001;285(3):329–333.
19.
MetzgerRATaylorGJMcGawLJ. Research to practice: A national consensus conference. Prog Transplant.2005; 15(4):379–384.
20.
Health Care at the Crossroads: Strategies for Narrowing the Organ Donation Gap and Protecting Patients [white paper]. Oakbrook Terrace, IL: Joint Commission for Accreditation of Healthcare Organizations; 2004. http://www.jointcommission.org/assets/1/18/organ_donation_white_paper.pdf. Accessed November 20, 2011.
21.
ShaferTJWagnerDChessareJ. US Organ Donation Breakthrough Collaborative increases organ donation. Crit Care Nurs Q.2008;31(3):190–210.
22.
MarksWHWagnerDPearsonTC. Organ donation and utilization, 1995–2004: Entering the collaborative era. Am J Transplant.2006;6(5 part 2):1101–1110.
23.
HowardDHSiminoffLAMcBrideVLinM. Does quality improvement work? Evaluation of the Organ Donation Breakthrough Collaborative. Health Serv Res.2007;42(6 pt 1): 2160–2173.
24.
PunchJDHayesDHLaPorteFBMcBrideVSeelyMS. Organ donation and utilization in the United States, 1996–2005. Am J Transplant.2007;7(5 part 2):1327–1338.
RoggenkampSDAldridgeAGuyBRocheleauCAElmoreTS. Exploring the relationship of hospital and market characteristics and organ donation in US hospitals [practitioner application]. J Healthc Manage.2007;52(6):368–383.
WoienSRadyMYVerheijdeJLMcGregorJ. Organ procurement organizations Internet enrollment for organ donation: Abandoning informed consent. BMC Med Ethics.2006; 7:14.
RodrigueJRCornwellDLHowardRJ. Organ donation decisions: Comparison of donor and nondonor families. Am J Transplant.2006;6(1):190–198.
32.
HowardRJCornellDLKovalCB. When the donor says yes and the family says no. Prog Transplant.2008;18(1):13–16.
33.
ChristmasABBurrisGWBogartTASingRF. Organ donation: Family members NOT honoring patient wishes. J Trauma.2008;65(5):1095–1097.
34.
ChristmasABMallicoEJBurrisGWBogartTANortonHJSingRF. A paradigm shift in the approach to families for organ donation: Honoring patients' wishes versus request for permission in patients with Department of Motor Vehicles donor designations. J Trauma.2008;65(6):1507–1510.
35.
LawlorMDobbinsTThomasK-ABillsonF. Consent for corneal donation: The effects of age of the deceased, registered intent and which family member is asked about donation. Br J Ophthalmol.2006;90(11):1383–1385.
36.
RodrigueJRCornellDLHowardRJ. Attitudes toward financial incentives, donor authorization, and presumed consent among next-of-kin who consented vs. refused organ donation. Transplantation.2006;81(9):1249–1256.
37.
LawlorMKerridgeIAnkenyRDobbinsTABillsonF. Specific unwillingness to donate eyes: The impact of disfigurement, knowledge and procurement on corneal donation. Am J Transplant.2010;10(3):657–663.
VerbleMWorthJ. Adequate consent: Its content in the donation discussion. J Transplant Coord.1998;8(2):99–104.
40.
SiminoffLAGordonNHewlettJArnoldRM. Factors influencing families' consent for donation of solid organs for transplantation. JAMA.2001;286(1):71–77.
41.
RodrigueJRScottMPOppenheimAR. The tissue donation experience: A comparison of donor and nondonor families. Prog Transplant.2003;13(4):258–264.
42.
SiminoffLAMarshallHMDumenciLBowenGSwaminathanAGordonN. Communicating effectively about donation: An educational intervention to increase consent to donation. Prog Transplant.2009;19(1):35–43.
43.
HarrisonTRMorganSEDi CorciaMJ. Effects of information, education and communication training about organ donation for gatekeepers: Clerks at the Department of Motor Vehicles and organ donor registries. Prog Transplant.2008;18(4):301–309.
44.
LawlorMKerridgeIAnkenyRBillsonF. Public education and organ donation: Untested assumptions and unexpected consequences. J Law Med.2007;14(3):360–366.
45.
LawlorMKerridgeI. Registering wishes about organ and tissue donation: Personal discussion during license renewal may be superior to online registration. Intern Med J.2009;39(12): 835–837.
46.
HowardDHByrneMM. Should we promote organ donor registries when so few registrants will end up being donors?Med Decis Making.2007;27(3):243–249.
47.
ThomasSLMilnesSKomesaroffPA. Understanding organ donation in the collaborative era: A qualitative study of staff and family experiences. Intern Med J.2009;39(9):588–594.
48.
BurroughsTEHongBAKappelDFFreedmanBK. The stability of family decisions to consent or refuse organ donation: Would you do it again?Psychosom Med.1998; 60(2):156–162.
49.
FultonJFultonRSimmonsRG. The cadaver donor and the gift of life. In: SimmonsRGKlienSSimmonsRL. The Social and Psychological Impact of Organ Transplantation. New York, NY: Wiley; 1977:338–376.
50.
MortonJBLeonardDR. Cadaver nephrectomy: An operation on the donor's family. Br Med J.1979;1(6158):239–241.
51.
BattenHLProttasJM. Kind strangers: The families of organ donors. Health Affairs.1987;6(2):35–47.
52.
BeardJIrelandLDavisNBarrJ. Tissue donation: What does it mean to families?Prog Transplant.2002;12(1):42–48.