This survey, containing a short information part on the organ donation law in Austria and 3 questions concerning the law, compared the knowledge about the current organ donation law in Austria and the attitude towards this legislation between ICU nurses, health science students, students of non health science courses. The results of the online survey were compared to data from a paper survey conducted previously with patients from the outpatient transplantation clinic of the Medical University of Graz, who have already received whole organ transplantation or are still on the waiting list for transplantation. The information level on the Austrian organ donation legislation varies in the target groups and is influenced by demographic variables of the participants. Opinions and attitudes towards the legal situation are positively influenced by the affiliation health-related fields of study. Interviewed persons, who had been aware of the legislation before the survey, showed significantly higher agreement with the existing law than those, who reported not to know the law. ICU nurses were the most critical group of interviewees. Our survey was not intended to provide an information intervention and also not designed to reveal the underlying reasons for a critical opinion towards the law; however, from our point of view, the survey may help to intend actions for enlarging the organ donor pool.
The willingness to participate in this online survey was different between the target groups. ICU nurses were most willing to participate in the online survey and female participants were more likely to complete the survey compared to male participants. Because of that and because of the female predominance in some of the target groups, 65% of the participants were women. All patients from the transplantation outpatient clinic, who were asked to participate, were willing to fill in the questionnaire; however, 5% did not complete the questionnaire.
The conduction of online surveys is a valid method to obtain information from a large cohort in a short period of time but also has several limitations: The sample of participants can be biased in a way that only persons interested in the subject will participate. However, being interested in this topic does not mean being supportive towards the organ donation law. In our study 26% of invited subjects participated in the survey, the highest rate of participation was found in the group of ICU nurses, most likely because in this group the personal interest in organ transplantation is highest, since most of the ICU nurses have already had professional experience with the organ donation process. Since we were not able to obtain information if all email-addresses used in the survey were still valid (e.g. because students had graduated), the number of participants might be false low because there might a considerable number of invalid adresses (e.g. because students had graduated). Another possible limitation is that we cannot fully exclude that participants filled in the questionnaire more than once. Since many participants used the same network (university network) or even the same computer in the hospital, we had to allow access by the same IP address more than once. But since there was no reward for participants other than the gained knowledge, we believe that it is unlikely that subjects completed the questionnaire more than once.
Self-reported knowledge of the legislation in Austria was 84% in all groups. Nearly all ICU nurses and students of health care related subjects reported that they knew the law before reading the information page. However, only 59% of students in non health science courses knew the law. Interestingly also 15% of patients in the transplantation outpatient clinic did not know the law. The level of self-reported knowledge in our study however is considerably higher than reported in studies from other countries. Polish theology students only knew the Polish law in 28%, Polish medical students knew the law in only 23%, Swiss first-year medical students in 44% and French first-year medical students in 51%
[7–10]. The difference of these studies to our study was that we only asked if the participants knew the law before but we did not verify this self-reported knowledge. There might be a certain amount of participants who think that they know the law but who would in fact not be able to give the correct answer on a question asking if Austria has an “opt-in” or “opt-out” system.
Persons who completed secondary education (e.g. nursing school) were more likely to state that they know the legislation. In other studies young females with higher education have been shown to have the highest knowledge about organ transplantation
We also observed broad agreement with the existing law; out of the cohort who answered the survey 74% were in favor with the Austrian legislation on organ donation. The highest percentage (86%) of agreement with the law was found in the group of patients, while ICU nurses in 16% thought that the law is unethical. Interestingly, also 4 patients from the transplantation outpatient clinic thought that the existing law is unethical. Since the survey was conducted anonymously we were not able to find out the reasons for this opinion or if the patients were already transplanted or still on the waiting list for organ transplantation. Focusing on the results obtained by questioning the ICU nurses, our results are in accordance to literature where ICU nurses have been shown in several studies to be most critical towards the “opt-out” solution in organ donation
[8, 12, 13]. ICU nurses are also reported to have problems in trusting brain death diagnosis
Participants who reported that they knew the law prior to the information which was provided considered the law to be good in a significantly higher proportion than those who stated that they did not know the law before, underpinning the importance of continuous education in the general population and in the target groups who might be involved in organ donation. This notion is also supported by studies from Germany where a strong association between possession of an organ donor card (informed group) and the willingness to donate organs was found
. However, a study among students at the University of Regensburg revealed that although nearly 1/3 of the students possess an organ donation card, and therefore could be considered as well informed, there is a considerable lack of knowledge on brain death
. However, our study did not directly evaluate the effect of information on the opinion towards the organ donation law.
When we asked the participants if the will of the family should be considered prior to organ donation, about half of the ICU nurses and students but only 8% of patients chose this option. We also asked the participants if they agree that provided that potential organ donors did not choose the “opt-out” option during their lifetimes, it should be possible to retrieve their organs after death against the will of the relatives, as the intention of the deceased person is not reproducible anymore. This scenario, which in theory is covered by the law (in practice the definitive will of relatives will not be overruled), is acceptable for nearly one third of the students but only 18% of the ICU nurses, whereas nearly half of the patients from the transplantation outpatient clinic think that this is acceptable. Patients therefore tended to choose the solution that is most favorable for them in a way that more organs will be available whereas ICU nurses are most concerned about the will of the family, most likely because they are usually in close contact to the family during the process of brain death diagnosis and discussion about organ donation. In an Australian study using a grounded theory approach to elicit community attitudes on deceased organ donation, participants saw a need in a more simple form of family consent, where family members could not overrule the donation decision of the deceased person
The last question of the online survey, which was not included in the paper survey conducted in the transplantation outpatient clinic dealt with the question if participants would like to see a change in the existing law and if they would consider putting their name into the contradiction register. The majority of participants did not wish to change the existing law. However, ICU nurses and those who did not know the law before more often preferred a change to the “opt-in” solution. Also women and those who completed secondary education more often voted for an “opt-in” solution. Since ICU nurses are predominantly female and have completed the nursing school as their highest education, this finding was not unexpected as in general young females with higher education have the highest knowledge on organ transplantation
Adequate and fair communication with the donor families is essential, irrespective of the law in a country
. A change from an “opt-in” to an “opt-out” solution for organ donation has been shown to be associated with an increase in organ donation rates. However, when looking at the details of these studies, other factors than presumed consent that had an impact on organ donation rates such as changes in mortality from road traffic accidents and cerebrovascular accident, the development of the transplant programs transplant capacity of a country, economic reasons, religion, education, or public access to information
. Several studies from the UK looked at the public support for the change to a presumed consent solution and found that the rate of support increased in the last years (28% to 64%)
. A survey among UK faith’s leaders showed that they prefer the “opt-in” solution
. In our study we did not include religion as a factor because the vast majority of the Austrian population belongs to a Christian religion and therefore no statistical meaningful conclusions about differences between religious groups could have been drawn.
In summary we could show that the Austrian law on organ donation is well known to ICU nurses, students and patients in the transplantation clinic. There is also broad acceptance of the law. However, especially ICU nurses are more critical and think that the law is unethical. They are also most concerned about the opinion of the relatives of potential organ donors. Only a minor percentage considers putting their name in the Austrian contradiction registry.
These results suggest, that those who are most involved with organ donation in practise are most critical what is in accordance with previous publications
[8, 12, 13]. A questionnaire among ICU staff in Austria revealed that a lack of education and training is one of the key factors for feeling uncomfortable with the process of organ donation
. Furthermore healthcare professionals support organ donation in a higher percentage (83%) but more than half of the interviewees wanted to be buried with all their organs intact
. This result shows the ambivalence in the opinion of healthcare professionals. The need for education has been shown to be high (21%) in hospital employees
. Education is requested by health professionals, can correct false information and might lead to higher organ donation rates
[24–26]. However, also legitimate reasons for their concerns, such as problems in accepting the brain death concept or organ procurement procedures might be present. The opportunity to discuss these issues during training programs might be valuable to understand the areas of concern and to develop strategies to overcome these concerns in order to increase the organ donation rate.
In conclusion the widespread support of the existing organ donation law in Austria is encouraging. Targeted education and training programs for health care professionals are warranted. Moreover, a wider range of the general population should be informed about the legislation as the results of our study showed that participants, who are aware of the “opt-out” law, showed a positive attitude towards organ donation. Therefore, educational programs for professionals and public information could be a possibility to increase the support for the current legislation. Our study, however, is not able to answer the question what should be considered education, and what factors other than lack of education could contribute to the critical attitude of ICU nurses towards organ procurement policies and procedures. Therefore further in depth studies on this topic are warranted. However, from our point of view, information about organ donation and organ procurement for the public might be a possibility to increase the organ donation rate in the different countries; independent of the “op-in” or “opt-out” system, whereas we are convinced that an equal legislation in Europe or at least in the EUROTRANSPLANT regions might be helpful to diminish organ shortage and therefore increase organ transplantations and consequently improve patient survival and quality of life.