Christian Daniel Fankhauser, Christian Benden
In the United States, an increasing gap between the supply of and demand for solid organ transplants led to a public health crisis with currently over 110,000 patients waiting for a lifesaving transplant . Many organs originate from cadaveric organ donation, and donors are required to consent while alive, a concept often referred to as expressed consent. However, only 5% of all potential donors have a documented expressed consent and therefore family members of the deceased patient also may consent for donation, a process which is described as weak expressed consent . This difficult decision puts pressure on families and only 30% have previously discussed organ donation with the deceased . As a consequence, up to 60% of families do not approve organ donation of their loved ones, most commonly because of uncertainty and to minimise family distress in such already emotionally difficult situations .
To increase organ donation rates and release family members from difficult decisions, many countries changed from expressed to presumed consent . Presumed consent means that every adult has the opportunity to refuse donation, but in absence of such a record, one presumes consent. A further modification is weak presumed consent, which allows family members to overrule a presumed consent, if they believe that the deceased would object to donation. This essay focuses on the ethical reasoning behind the introduction of weak presumed consent for organ transplantation. From two ethical perspectives, namely utilitarian and libertarian, the authors argue why introducing presumed consent is ethically justified.
In deciding what laws or policies to enact, utilitarianism favours that “a government should do whatever will maximise the happiness of the community as a whole” . From a societal perspective, long waiting lists for transplants have a detrimental impact on life expectancy and quality of life. Furthermore, because transplantation is cost-effective compared with standard of care, organ donation rates should clearly be increased . However, several concerns regarding presumed consent have been raised and are addressed as follows.
First, some question the effect of presumed consent legislation on donation rates. A systematic review including 13 studies comparing organ donation rates in countries with or without presumed consent or after changes in legislation showed increased donation rates in all countries . However, critics argue that other innovations in the health care system rather than the implementation of presumed consent led to this increase. Nevertheless, because randomised controlled trials are unfeasible to conduct under these circumstances, we have to rely on the highest available level of evidence, which uniformly points into the direction that presumed consent increases donation rates.
Second, the relationship of trust between clinicians caring for patients at the end of life and their families is a fundamental prerequisite in health care, which should not be put at risk by changing the way of consent. Critics argue that taking the decision to donate out of the hands of family members appears morally degrading, leading to distrust. However, the authors do not believe that such situations will occur because weak presumed consent implies that families can always oppose if they believe that the deceased person would not agree.
Lastly, opponents argue that unawareness of the consequences of not opting out and insufficient access to donation registries prevents residents from refusing donation. The authors agree that it is mandatory to ensure that the preference of each resident is registered, but in developed countries, this can appropriately be established in the same way as many governmental services. Additionally, the authors suggest that the preference of each individual should also be reassessed several times, such as while applying for or renewing legal documents (e.g., passport, driving license). In summary, covering the beliefs of all residents requires a transparent informative campaign, accessible systems to record consent and, ideally, a repeated assessment of consent.
A libertarian replica
Many opponents of presumed consent argue that libertarian principles such as freedom of choice and individual judgment  contradict per se presumed consent, which the authors hereby oppose. A libertarian stance does honour the principle that individuals have interest not only until death but also thereafter and their expectation regarding organ donation should be respected. Critics of presumed consent argue that in the absence of consent the default answer regarding donation can only be denial. However, as 80–90% of residents would principally favour donating their organs , a default denial would ignore expectations of the vast majority of residents. Therefore, weak presumed consent considering family expectations is more likely to reflect the preferences of deceased residents.
In summary, the public debate around consent for organ donations is very important as these discussions shed light on the public health crisis of donor organ shortage. Given some valid concerns, it remains key that (i) a transparent informative campaign precedes any legislative changes, (ii) recording of patients’ objections is facilitated by all means and (iii) consent is reassessed at multiple time-points. According to the experience of many countries, presumed consent will most likely increase donation rates, however, to an unclear extent. Supporting interventions such as identifying potential donors and training healthcare workers will remain a cornerstone of donor organ donation systems [3, 5].
This essay was drafted as an in-class project of the course “Ethical Basis of the Practice of Public Health” at the Harvard School of Public Health led by Dr Lisa Lehmann, Dr Susannah Rose and Ka Ya Lee PhD candidate.
The MPH of Dr Fankhauser was generously supported by the University Hospital of Zurich, medAlumni Zurich, Stiftung für urologische Forschung, Marlis Geiser-Lemken Stiftung, Fonds zur Förderung des akademischen Nachwuchses (FAN), Ernst Göhner Stiftung, SAKK/Dr Paul Janssen Fellowship, Arnold U. und Susanne Huggenberger-Bischoff.
Potential competing interests
No potential conflict of interest relevant to this article was reported.
Christian Daniel Fankhauser
Christian Benden, MD, Division of Pulmonology, University Hospital Zurich, University of Zurich, CH-8091 Zürich
- United Network For Organ Sharing. Waiting list candidates by organ type. July 2019. Available at: www.unos.org/data/transplant- trends/ waiting - list - candidates - by - organ - type/.
- Repräsentative Bevölkerungsumfrage. Ergebnisse der DemoSCOPE Erhebung. Available at: www.swisstransplant.org/fileadmin/user_upload/Swisstransplant/Publikationen/Wissensch_Publikationen/DemoSCOPE_Ergebnisse_Swisstransplant_DE.pdf
- Seiler CA, Bischoff P, Nett PC, Candinas D. Abnehmende Organspendebereitschaft als nationales Problem: Im Engagement liegt der Lösungsansatz. Schweiz Arzteztg. 2006;8(4):143–50. doi:https://doi.org/10.4414/saez.2006.11707.
- Shaw D, Georgieva D, Haase B, Gardiner D, Lewis P, Jansen N, et al.; ELPAT Working Group on Deceased Donation. Family Over Rules? An Ethical Analysis of Allowing Families to Overrule Donation Intentions. Transplantation. 2017;101(3):482–7. doi:https://doi.org/10.1097/TP.0000000000001536. PubMed
- Rithalia A, McDaid C, Suekarran S, Norman G, Myers L, Sowden A. A systematic review of presumed consent systems for deceased organ donation. Health Technol Assess. 2009;13(26):iii, ix–xi, 1–95. doi:https://doi.org/10.3310/hta13260. PubMed
- Sandel MJ. Justice: What's the right thing to do? New York: Macmillan; 2010.
- Haller M, Gutjahr G, Kramar R, Harnoncourt F, Oberbauer R. Cost-effectiveness analysis of renal replacement therapy in Austria. Nephrol Dial Transplant. 2011;26(9):2988–95. doi:https://doi.org/10.1093/ndt/gfq780. PubMed
- Webb G, Phillips N, Reddiford S, Neuberger J. Factors Affecting the Decision to Grant Consent for Organ Donation: A Survey of Adults in England. Transplantation. 2015;99(7):1396–402. doi:https://doi.org/10.1097/TP.0000000000000504. PubMed