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Family Over Rules? An Ethical Analysis of Allowing Families to Overrule Donation Intentions

Shaw, David PhD; Georgieva, Denie LLM; Haase, Bernadette MPH; Gardiner, Dale MD; Lewis, Penney PhD; Jansen, Nichon PhD; Wind, Tineke PhD; Samuel, Undine MD; McDonald, Maryon DPhil; Ploeg, Rutger MD, PhD, FRCS; on behalf of the ELPAT Working Group on Deceased Donation

doi: 10.1097/TP.0000000000001536
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Abstract: Millions of people want to donate their organs after they die for transplantation, and many of them have registered their wish to do so or told their family and friends about their decision. For most of them, however, this wish is unlikely to be fulfilled, as only a small number of deaths (1% in the United Kingdom) occur in circumstances where the opportunity to donate organs is possible. Even for those who do die in the “right” way and have recorded their wishes or live in a jurisdiction with a “presumed consent” system, donation often does not go ahead because of another issue: their families refuse to allow donation to proceed. In some jurisdictions, the rate of “family overrule” is over 10%. In this article, we provide a systematic ethical analysis of the family overrule of donation of solid organs by deceased patients, and examine arguments both in favor of and against allowing relatives to “veto” the potential donor's intentions. First, we provide a brief review of the different consent systems in various European countries, and the ramifications for family overrule. Next, we describe and discuss the arguments in favor of permitting donation intentions to be overruled, and then the arguments against doing so. The “pro” arguments are: overrule minimises family distress and staff stress; families need to cooperate for donation to take place; families might have evidence regarding refusal; and failure to permit overrules could weaken trust in the donation system. The “con” arguments are: overrule violates the patient's wishes; the family is too distressed and will regret the decision; overruling harms other patients; and regulations prohibit overrule. We conclude with a general discussion and recommendations for dealing with families who wish to overrule donation. Overall, overrule should only rarely be permitted.

The ELPAT working group analyzes the arguments for and against the ability of families to overrule the consent wishes of a deceased donor within an ethical framework. The investigators conclude that consent should be overruled only rarely.

1 Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.

2 Department of Health, Ethics and Society, Care and Public Health Research Institute, Maastricht University, Maastricht, the Netherlands.

3 Dutch Transplant Foundation, Leiden, the Netherlands.

4 Deputy National Clinical Lead for Organ Donation, NHS Blood and Transplant, Nottingham, United Kingdom.

5 Dickson Poon School of Law, King's College London, United Kingdom.

6 Department of Surgery, Maastricht University Medical Centre, Maastricht, the Netherlands.

7 Eurotransplant International Foundation, Leiden, the Netherlands.

8 Robinson College, University of Cambridge, Cambridge, United Kingdom.

9 Nuffield Department of Surgical Sciences and Oxford Biomedical Research Centre, University of Oxford, United Kingdom.

Received 20 July 2016. Revision received 16 September 2016.

Accepted 17 September 2016.

Dale Gardiner is deputy national clinical lead for organ donation in the UK for NHS Blood and Transplant. The other authors declare no conflicts of interest or funding for this article.

All authors conceived and designed the article in a series of meetings, contributed to the analysis and reviewed various drafts. David Shaw wrote the bulk of the first draft with substantial contributions from D.Ge.; D.S. wrote several revisions of the article.

Correspondence: David Shaw, Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 284056, Basel, Switzerland. (david.shaw@unibas.ch).

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