Abstract
Because of its existential character, organ transplantation is strongly connected to a person’s view of life. This article describes how participants in a focus group use religious elements in decision-making on transplantation medicine in four European countries. Further these findings are related to two influential theologians: James Gustafson and Paul Ramsey, and their thinking on the role of religion in medical ethics. Both participants’ and theologians’ use of religious elements is complex, and show significant variety in regard to both content and form. Decisions in transplantation medicine would benefit from considering the complexity of religious views when striving for informed consent as participative involvement.
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Notes
The full title of the project is Challenges of Biomedicine—Socio-cultural Contexts, European Governance and Bioethics. Part of the 6th Framework Programme: Citizens and Governance in a Knowledge-Based Society. Project No. SAS6-CT-2003-510238. Initially, there was an interest in whether there would be a difference in thinking and deciding between persons with and persons without personal experience in gene-tests (GT) and organ transplantation (OT), respectively, and focus groups were divided between GT laypersons, GT affected, OT laypersons, and OT affected. The results show no significant difference with regard to the use of religious elements between affected and laypersons irrespectively of medical sphere. However, there is a difference regarding use of religious elements between persons involved in GT and OT, respectively. A generally higher frequency of religious elements can be seen in OT. Hence the focus lies on OT.
Extensive reports from these activities are written, though not published, as “Local Reports” following a common pattern in order to make comparisons possible. The very first step of the project was to write and circulate State of the art reports for each country in the project. However, these have not been published. Further information about the CoB-project is available on the following home page: www.univie.ac.at/virusss/cob.
Belgium also has a presumed consent as the basis for requiring an explicit objection, but the State is obliged to inform its citizens, and is then called an “informational solution.”
This can be compared with Japan and the State of New Jersey in the United States which legally accepts both “traditional” death criteria and brain death, letting the person (if previously made explicit) or his/her relatives decide which one to follow. Due to different solutions in a hierarchy between them, the outcomes for transplantation are very different. In Japan the traditional criterion is predominant, and thus few organs are transplanted, whereas New Jersey has the opposite hierarchy, and consequently has a larger number of transplantable organs. See Zeiler (2008) and Welin and Lundin (2001).
This differs from living-donation in Germany only in requiring adherence to the principles of voluntary action and personal closeness and no standardised procedures are agreed upon. There are similarities with the Swedish “Act (SFS 1987: 269) concerning criteria for determination of human death” which introduced the concept of brain death. Together with the National Board of Health and Welfare (Socialstyrelsen), it defines and clarifies how “total brain death” is asserted. In short it requires that “all brain functions completely and irreversibly have disappeared”. (Transplantationer räddar liv 2003).
An even wider, and probably more correct, definition would be to include “religious behavior.” But since the material to a very small extent offers information on behavior, other than that related to statements about what was actually thought regarding this behavior, it would be too broad for the present material. Moreover, there are similarities regarding content and use in terms of explanatory power in existential issues between religious and other life views. Studies in Sweden show for instance that the terms “Nature” or “natural order” are often given connotations similar to those given to “God” and “God’s wish” in a religious life view. In the categorising process, the latter terms have not been picked up, and are therefore not included in this study. See Westerlund (2002, Chapter 3) and Åkesson (1996).
See also Gustafson (1996, pp. 81–95).
This also influences Gustafson’s understanding of the foundation of religious thinking, theology as primarily based in the affective dimension of human experience and expressed in religious symbols and ideas. See also Rae et al. (1999).
For each quote from the transcripts the following system was used throughout the research project: Person (as coded in each research team); gender; nation; focus group of lay persons or affected (donors/recipients and relatives); passage. In this case: Person 7, female, in the Cypriot group on affected, passage 7:20 in the transcripts).
Legislation regarding elective/interventional/non-therapeutic ventilation (continued medical care for a brain dead patient) in order to keep organs transplantable differs between nations. It is illegal in, for instance, Sweden and the United Kingdom, but legal in Austria and Spain.
The concepts of obedient love and grateful obedience are elaborated throughout the book. See also Rae and Cox, pp. 20–27 for a slightly different description of Ramsey’s view, focusing on the covenant relationship between Israel and God on the one hand, and the teachings of Jesus on the other.
“…from my perspective, the patient’s present and future possibilities for participation in life for his own sake and for the role he can have in human communities would morally warrant an intrusion even against the patient’s will.” (Gustafson 1984, p. 215).
See also Verhey who describes this approach as “Gustafson’s Casuistry” (Verhey 1993, p. 45).
See Röcklinsberg (2006) for a deeper discussion of these components.
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Unpublished
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Acknowledgments
For financial support through the EU-Project Challenges of Biomedicine, I am very grateful, as well as for comments on earlier manuscripts made by project partners. Above all, I wish to thank two anonymous referees whose comments were very useful, and also additional colleagues who have contributed with their thorough reading and comments. A special thanks goes to Ulf Görman, Susanne Lundin, Anders Melin, and Kristin Zeiler.
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Röcklinsberg, H. The Complex Use of Religion in Decisions on Organ Transplantation. J Relig Health 48, 62–78 (2009). https://doi.org/10.1007/s10943-008-9209-7
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DOI: https://doi.org/10.1007/s10943-008-9209-7