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New Thinking About Honor and Deceased Organ Donation

  • Jason D. Woodfine
    Affiliations
    Department of Medicine, University of Toronto, Ontario, Canada

    Evaluative Clinical Sciences Program, Sunnybrook Research Institute, Toronto, Ontario, Canada

    Institute for Clinical Evaluative Sciences in Ontario, Toronto, Ontario, Canada
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  • Donald A. Redelmeier
    Affiliations
    Department of Medicine, University of Toronto, Ontario, Canada

    Evaluative Clinical Sciences Program, Sunnybrook Research Institute, Toronto, Ontario, Canada

    Institute for Clinical Evaluative Sciences in Ontario, Toronto, Ontario, Canada

    Division of General Internal Medicine, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada

    Center for Leading Injury Prevention Practice Education & Research, Toronto, Ontario, Canada
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      Two decades ago, a 7-year-old American boy named Nicholas Green was fatally shot while vacationing with his family in Italy. In an astonishing act of humanity, his parents immediately consented to donate his organs to other adults and children in Italy who were awaiting organ transplantation. Their altruistic decision received widespread media tributes and contributed to a dramatic sustained 3-fold increase in deceased organ donation rates throughout Italy that continues to today (Figure).
      • Green R.
      Nicholas: the boy who saved thousands of lives.
      Nicholas Green is among the most famous deceased organ donors in history and has been credited with raising organ donation rates for several other European countries.
      Figure thumbnail gr1
      FigureDeceased organ donation over time. Line graph of national rates of deceased organ donors for the US and Italy over 2 decades. X-axis shows time indexed to calendar year spanning from 1992 (first data available) through 2012 (most recent data available). Y-axis shows deceased organ donors expressed as number of donors per million population in corresponding year. Data obtained from the International Registry in Organ Donation and Transplantation. The upper red line depicts the US and the lower blue line depicts Italy. Nicholas Green case marked by green arrow at October 8, 1994. Main results show 4-fold increase over time in Italy, with smaller changes in the US. Earlier time-series data are unavailable for either country; hence, causal influence of the Nicholas Green case cannot be inferred, and increases cannot be attributed to one single event.
      In the US, however, deceased organ donation rates have increased only marginally. The main current campaigns target community members to become organ donor card holders. Yet, a signed organ donor card is neither necessary nor sufficient for donation. American law permits organ retrieval from patients when consent has been documented, but organ retrieval usually does not proceed if the family objects.
      • Rosenblum A.M.
      • Horvat L.D.
      • Siminoff L.A.
      • Prakash V.
      • Beitel J.
      • Garg A.X.
      The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations.

      Wilkinson M, Wilkinson S. The donation of human organs. In: Edward Z, ed. The Stanford Encyclopedia of Philosophy (Winter 2011 Edition). Available at: http://plato.stanford.edu/archives/win2011/entries/organ-donation/. Accessed February 21, 2014.

      Therefore, an organ donor card effectively only provides an opportunity to initiate a conversation—the final authorization relies on the family's consent. Deceased organ donors are the recognized heroes, but only if their family has the courage when it matters most.
      Many other strategies have been considered for increasing deceased organ donation in the US. Examples include opt-out vs opt-in systems for consent, donation after cardiac death, expanded criteria donation, incentives for physicians to better manage potential donors, enhanced organization of organ procurement agencies, and programs of rewarded gifting for bereaved families.
      • Capron A.M.
      Reexamining organ transplantation.
      Additional proposals for increased financial incentives toward the families of deceased organ donors are increasingly debated.
      • Wendler D.
      • Dickert N.
      The consent process for cadaveric organ procurement: how does it work? How can it be improved?.
      In contrast, such financial market transactions are legal in Iran, occur in black-market dealings in India, and remain universally prohibited in Canada.
      • Griffin A.
      Kidneys on demand.
      • Goyal M.
      • Mehta R.L.
      • Schneiderman L.J.
      • Sehgal A.R.
      Economic and health consequences of selling a kidney in India.
      The case of the Greens exemplifies a different method for increasing organ donation rates that is potentially less divisive. Specifically, behavioral economics research indicates that nonfinancial incentives can be powerful determinants of peoples' behavior.
      • Petry N.M.
      • Barry D.
      • Pescatello L.
      • White W.B.
      A low-cost reinforcement procedure improves short-term weight loss outcomes.
      As such, providing more public accolades to the surviving family might further help to promote organ donation. Obviously, such efforts require sensitivity and must respect any requests for privacy. If honored, however, the affirmations could be transformational following the death of a family member and also motivate a few bereaved families to become advocates for deceased organ donation, as exemplified by the subsequent pioneering efforts of Reg Green (father of Nicholas Green).
      More public recognition of the surviving family members of deceased organ donors could address some important prevailing problems. First, it might prompt the public to realize that organ donation decisions are not wholly a private matter but, instead, are partially a family affair. Second, informed families might better advocate for the patient in situations where health care providers do not automatically raise the option of organ donation. Third, public norms might shift, allowing others in the community to reciprocate their respect back to surviving family members.
      • Redelmeier D.A.
      • Woodfine J.D.
      Deceased organ donation and the Nicholas effect.
      The main drawbacks of public recognition are the potential for coercing vulnerable families and the need to maintain confidentiality for those who want privacy.
      While events lauding the vital contributions of organ donors are widespread both nationally and locally, public honors for the surviving families are relatively scarce. The National Donor Recognition Ceremony in the US, for example, occurs only once every 2 years in a single remote location.
      • Jensen A.M.
      A Sense of Absence: The Staging of Heroic Deaths and Ongoing Lives among American Organ Donor Families.
      Both transportation and accommodation costs are the responsibility of the attendees in the US and, as a result, many families do not attend. Indeed, most Americans never hear of such honors. As a consequence, the general message is not communicated and donor families remain invisible to the public.
      Large general hospitals could—but do not—recognize the surviving families of deceased organ donors. We surveyed the communications departments of all large general hospitals in Ontario and found that none provide any formal recognition of the families of deceased organ donors (whereas all provide formal recognition of hospital volunteers). The mismatch in hospital recognition for organ donation vs time donation seems to indicate that large general hospitals are reluctant to prioritize deceased donor recognition. Large general hospitals, furthermore, may remain hesitant to publicize their accomplishments in organ procurement due to fears that they might be perceived as failing to save lives.
      Organ donor families garner almost no mention in traditional organ donation campaigns, perhaps because of society's natural reluctance to discuss death. Instead, current public campaigns in the US focus mostly on grateful transplant recipients and how lives can be transformed. Some community members, however, may be better able to relate to the bereaved families who donate rather than receive. More attention to the families of donors might result in a greater willingness for others in the community to make similar positive consent decisions. Otherwise, American families remain unaware of the role they must play in the deceased organ donation decision. Public honors might help to venerate an otherwise taboo medical topic.

      Acknowledgment

      We thank the following for helpful comments: William Chan, Allan Detsky, Gary Levy, Sharon May, Zamir Merali, Damon Scales, Michael Schull, Stephen Stich, Michael Wong, and Christopher Yarnell.

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