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QUESTION: What are the feelings and ideas of the public about receiving and donating organs for transplantation?
A purposive sample of 69 people (age range 18–69 y, 54% men) who were registered bone marrow donors (n=31), blood donors (n=17), or members of the general public (n=21).
Interviews of 75–135 minutes were unstructured. Analysis of transcripts was based on hermeneutics and focused on identification of typical attitude patterns related to receiving and donating organs.
44 respondents had positive attitudes about organ donation, 21 had negative attitudes, and 4 were undecided. 53 respondents had positive attitudes about receipt of organs, 5 had negative attitudes, and 11 were undecided. Respondents seemed to fit into one of 7 typical attitude patterns regarding willingness to receive and donate organs.
The attitude pattern of willingness both to receive and give was characterised by a perspective of the body as an object or machine, where parts could easily be exchanged. The focus was on functioning of organs. Respondents appeared to cathexe (charge with emotional energy) their bodies less than others, and thus it was easier for them to give up or accept body parts. They had weak death anxiety. Respondents with a willingness to receive but not to give could accept organs, as their aim was to survive at any price. However, their strong death anxiety made them unwilling to donate their own or a relative's organs.
3 attitude patterns reflected different reasons underlying a willingness neither to receive nor to give. The pattern based on nature's order reflected a view that breaching the boundaries between human beings or species was against nature. Respondents were unwilling to participate in the “unnatural” activities of receiving or donating organs. The pattern based on the influencing organ focused on a belief that personality, behaviour, or appearance would be altered by the transplanted organ, which could transfer the qualities of the donor to the recipient. These respondents refused to donate organs because they did not want to become part of an unknown individual. They strongly cathexed their bodies, particularly organs such as the eyes, skin, and heart, which were perceived as having more identity than, for example, the kidneys or liver. The pattern of the reincarnated body reflected a philosophy about reincarnation and resurrection of the earthly body, whereby every molecule of the body was needed in the next life, and that one could not start a new life with organs missing. This view did not correspond to any established religion, but was “a homemade mixture of elements including both wishful thinking and quasi-scientific ideas”.
The attitude pattern of mixed feelings initially to receive and willingness to give, preferably to family members was characterised by initial ambivalence arising from a simultaneous wish to survive and a vague fear of becoming influenced by the transplant in some unknown way. Some respondents had feelings of disgust at having another person's intimate belongings or something connected with food and eating inside their body. Respondents who had mixed feelings initially to receive and willingness to give focused on body image and how changes to the body would be perceived. The ambivalence seemed to originate from a holistic view of the body, and concern about how a transplant would disturb a well balanced identity and the work that would be required to adjust to the new “composition”.
7 attitude patterns about organ transplantation seemed to reflect 2 conceptions of the body: the body as machine, where bodies were seen as machine like objects that did not express personal identity or self, and the influenced body, where body parts comprised the whole, which could be affected by transplanted organs.
The availability of organs and tissue for transplantation is driven by public attitudes towards transplantation. To increase organ donation, public awareness campaigns simply urge individuals to discuss organ donation with their families.1 Sanner presents an exploration of the willingness of individuals to accept or donate organs for transplantation, and identifies concepts that help to define the global construct of what is often termed as giving the “gift of life”. By interviewing the general public Sanner captures the views, in their own words, of a population not confounded by the dire need of an organ for survival.
Sanner purposively invited, for further interview, people identified in an earlier survey as having a wide range of opinions about organ donation. The description of the concept of the body as machine indicates that some people are able to define themselves outside of their body parts. In this way, accepting or donating organs does not present an internal conflict for the person. On the other hand, the influenced body presents a more complex conflict for people who believe that organs may represent facets of their personality. Sanner astutely points out that most people have perceptions of donation that lie between these 2 distinct concepts.
This work begins to shed light on the issues that must be faced long before one is approached about organ donation. This study represents an expansion of the work done in this poorly understood and researched phenomenon.
Sources of funding: Swedish Council for Social Research and the Vardalstiftelsen.
For correspondence: Dr M A Sanner, Department of Public Health and Caring Science, Social Medicine, Uppsala Science Park, S-751 85 Uppsala, Sweden. Fax +46 18 50 64 04.