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Archived Comments for: Does organ donation legislation affect individuals' willingness to donate their own or their relative's organs? Evidence from European Union survey data

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  1. Presumed Consent Policy and Willingness to organ donation in the European Union survey: The legislative Roles in Reinforcing the Ideology in Pluralistic Societies.

    Joseph Verheijde, Department of Philosophy, Arizona State University, & Mayo Clinic Arizona, Arizona, USA

    10 March 2008

    In the article [1] by Mossialos and colleagues, the authors find “Countries with a presumed consent policy had respondents with a higher willingness to donate their own organs as well as those of a relative. The result is even stronger in countries enforcing a presumed consent policy.” ……..“Therefore, the reason procurement rates might tend to be lower in countries with informed consent legislation could be that individuals tend to not make a decision and therefore do not end up donating organs” The authors conclude: “… presumed consent organ donation policy positively affects the willingness of individuals to donate their own organs and those of relative by highlighting the importance of awareness of this regulation and an individual's level of social interactions in making choices about donation. Results found using interaction terms underline the importance of population awareness of organ donation legislation as well as the legislation type itself.”

    The authors’ analysis confirms that presumed (i.e. no) consent for organ donation and its enforcement in European Union (EU) countries will increase the willingness of citizens to donate organs. Nonetheless, they do not mention or explore even more effective legislation of “conscription” for organ donation which can achieve the goal of almost 100% rate of willingness to donate in EU countries. In the “conscription” model, every individual in society is mandated to donate organs at the end of life [2-4]. The state or government assumes full rights and ownership of an individual’s body and organs at end of life. Conscription would indeed be a more consistent legislative option, in the context of the authors’ view of organ donation as an implicit communal contract with others.

    The authors must have been aware that at the time the EU survey was completed, two scenarios or types of organ donation existed: heart-beating (if a diagnosis of brain death is made) and non-heart- beating (cardiorespiratory arrest without a prior requirement of brain death). Both types of organ donors (brain dead or not) are resuscitated and maintained on artificial life support systems until the time when organs are procured [5, 6]. After organs have been removed from donors, death is certain [7] and thus organ donation at the end of life (not after death) is the accurate medical depiction of this process. Presumed consent to organ donation is also a presumed consent to keep potential organ donors alive for organ preservation until organs are removed by transplant professionals [8]. If the correct descriptive terminology was used in the EU survey questionnaire in place of “to donate one of your organs to an organ donor service immediately after your death”[1], the survey results might have been different. Those countries legislating presumed consent for organ donation are also obligated to inform and disclose to their citizens who are presumed to donate organs about the trade-offs in their end-of-life care because of the medical procedures required before death to procure organs [9-11]. The lack of truthfulness of transplantation practice about end-of-life organ donation processes has already created distrust in the medical profession [12]. The general public and especially presumed donors are not informed of the growing scientific and medical evidence indicating that donors may be killed in the processing of removing their organs at the end of life [7, 12-14]. Transplant advocates have defended the medical practice of removing organs based on ambiguous and controversial criteria to define death in donors [15-18]. It is doubtful if the EU countries enforcing presumed consent and with high willingness to organ donation have publically disclosed all these relevant facts to their citizens[1].

    The authors say: “Knowledge about organ donation policy and the organ donation process have also been found to increase individuals’ willingness to donate their own organs and those of a relative [22]. Fear can drive negative outcome expectations, which have been shown to be negatively related to likelihood of registering to be a donor [23]. Increased knowledge could alleviate this anxiety connected to being an organ donor through disseminating factual information to counteract fears [24].”

    The authors cite references [19-21] published in the period of 1990-2001 to state that there is a positive correlation between the extent of factual knowledge about organ procurement processes and the willingness to donate organs because education alleviates public fear. This statement contradicts the EU survey finding of less willingness to donate organs among citizens in countries adopting informed consent model than countries enforcing presumed (i.e. no) consent model. This finding disproves a positive association of information and knowledge level with the willingness to donate organs. Furthermore, the factual knowledge about organ procurement and donation processes that must be disclosed to donors has changed significantly since the EU survey was completed [22]. In 2007, an international survey of well educated university professionals has reported much higher rate of unwillingness and negative attitudes towards organ donation at the end of life [23, 24]. Several studies published between 2004 and 2008 also confirm the same trend of an inverse relationship between the depth of information and knowledge about medical practices and processes involved in removing organs at the end of life and the attitudes towards organ donation [25-27]. The 2005 Gallup survey in the US conducted by the US Department of Health and Human Service found that the majority of Americans are opposed or strongly opposed to presumed consent for organ donation [28]. Survey of health care professionals and providers in medical specialties who are directly involved with organ donation and procurement, have consistently expressed moral distress and considered that medical practice as euthanasia or physician assisted death [25-27]. In societies in which physicians are legally permitted to assist in suicide or death [29], presumed consent to the medical practice of end-of-life organ donation can operate under such legalizations. However, in societies and cultures where physicians’ active roles to assist in suicide or expedite death and commit euthanasia have neither been legalized nor morally agreed upon [30-32], presumed consent to the medical practice of end-of-life organ donation can only be construed as a public endorsement of violating homicide laws and societal norms [33]. Presumed consent for organ donation is most likely to affect certain vulnerable groups in society such as those with severe cognitive and/or physical disabilities, the chronically institutionalized, the very sick, the poor and the homeless who are without families or surrogates that can stand up to defend them at the end of life. Introducing “one size fit all” legislation to organ donation also targets certain cultural and religious groups in society, only to reinforce the perception of inequities and opportunism of transplantation practice in society [34].

    So why are the findings of the EU survey significant in the context of organ donation and transplantation practice?

    The authors have indicated that organ donation is an implicit “communal contract with others" and an "expression of an individual's reciprocity", therefore, a presumed consent policy enhances "the efficiency in pursuing this collective action as a society" through soft paternalism. An ideology consists of a systematic body of concepts and manner of thinking about human life and culture to constitute a sociopolitical program in society. Citizens’ behavior is then expected to comply with this pre-conceived and dictated ideology. Here, the ideology involves transplant advocates and lobbyists changing traditional sociopolitical concepts to maximize transplantation activities through legislating for special interest groups [35]. The EU survey confirms that legislations are powerful tools to invoke this specific ideology by systematically dismantling resisting boundaries in society and forcing citizens to conform to the institutionally dictated ideology. In addition, the (mis)use of legislative authorities to enforce a particular ideology serving special interests of certain groups will also transgress basic human rights by crushing beliefs and values of different ethnic, religious and cultural groups in society [36]. Mandating procurement of organs through presumed consent breaches the boundaries of forbidden areas of rituals about handling of the deceased body in many religions and cultures. Several cultures and religions object to practices that actively shorten the dying process[30, 37]. Bodily mutilation and removing organs can be abhorrent to grieving families of the recently deceased [37].

    In developed countries, presumed consent for organ donation at end of life represents a regression of western ideas away from upholding fundamental right of individuals to autonomously decide what happens with their bodies.

    J.L. Verheijde, PhD, MBA, PT

    Department of Physical Medicine and Rehabilitation

    Mayo Clinic Hospital, Phoenix, Arizona, USA

    Adjunct Professor of Bioethics,

    Arizona State University, Tempe, Arizona, USA

    M.Y. Rady MD FRCS (Ed.) FRCS (Eng.) FRCP (UK) FCCM

    Professor, Mayo Clinic Arizona,

    Consultant, Department of Critical Care Medicine,

    Mayo Clinic Hospital, Phoenix, Arizona, USA

    J.L. McGregor, Ph.D.

    Lincoln Professor of Bioethics

    Professor, Department of Philosophy,

    Arizona State University, Tempe, Arizona, USA

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    Competing interests

    none

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