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Organ Donation: A Comparison of Donating and Nondonating Families in Turkey
Organ Donation: A Comparison of Donating and Nondonating Families in Turkey F. Can* and S. Hovardaoglu From the Turkey Organ Transplant Network, Ankara, Turkey
ABSTRACT Based on public opinion surveys, although 75% of people state that they would donate the organs of one of their relatives, in reality, the rate of the people who donate the organs of their relatives is 24%. To decrease the organ shortage, the key point is to understand the difference between intention and real behavior. For this reason, in this study, analyses of variables related to the potential organ donor families’ decisions of approval or refusal for organ harvesting were analyzed. The interviews were conducted with 101 families who made a decision about organ donation between 2010 and 2014. The variables, strongly related with the family decision, are the wishes of the deceased persons about donation, suspicions regarding brain death, the desire to protect body integrity, and the satisfaction levels of the families with the approaches of medical personnel. The findings, obtained from qualitative data, also support the quantitative data. The results indicate that both education of the public about maintaining a positive attitude toward organ donation and education of health professionals can be key factors in decreasing the organ shortage.
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OWADAYS, organ transplantation is a vital treatment method for treating organ failure. Thanks to the developments in organ harvesting, preserving, transplantation techniques, and immunosuppressive medicine, the treatment of organ transplantation increases life expectancy among recipients greatly [1]. This treatment also enables an important increase in life quality in terms of physical and emotional life, social relations, and professional development [2]. Although there is a rapid advancement in terms of surgical techniques for organ transplantation, the number of donors is insufficient. In view of ever-increasing demand, many countries continue to make efforts to increase the rates of cadaveric organ donation [3]. The efforts toward increasing the numbers of organ donation to transplant organs from deceased persons has been limited in Turkey for many years; to improve the determination of potential donors, the National Organ and Tissue Transplantation Coordination System (UKS) was established in 2000. Thereafter, and affiliated with this system, the National Organ and Tissue Transplantation Coordination Center and nine Regional Coordination Centers were established. With the establishment of this system, the donor rate per million population increased from 0.7% in 2000 to 7.2% in 2016 [4]. Moreover, with the ª 2017 Elsevier Inc. All rights reserved. 230 Park Avenue, New York, NY 10169
Transplantation Proceedings, 49, 1969e1974 (2017)
establishment of UKS, including multiple coordination levels (hospital, regional and national), donor identification, donor management, and approaches to family members became possible for qualified staff. Today, 60% of health professionals working to coordinate organ transplantation are nurses and 40% are doctors (anesthetist or intensive care expert) [5]. However, because the rates of cadaveric organ donation are lower than the rates of patients waiting for an organ, encouraging living donation in Turkey is an important initiative; indeed, 80% of transplantations are made from living donors today. Despite efforts to expand organ donation, the number of patients awaiting transplantation (22,330 in 2015) far outpaces the number of donations (3917 in 2015) [6]. In Turkey, cadaveric organ donation is possible in case of brain death, during which cardiorespiratory support is sustained. Potential donors are defined as patients whose brain death is confirmed or who have the high possibility of brain death. In general, families are approached regarding organ donation by the organ transplantation coordinator after the
Funded by the Turkish Transplant Foundation. *Address correspondence to Fatma Can, 52nd Street No. 5/9, 06500, Bahcelievler, Ankara, Turkey. E-mail: [email protected] 0041-1345/17 https://doi.org/10.1016/j.transproceed.2017.09.032
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primary doctor treating the patient informs the family about brain death. One of the greatest obstacles to increasing the rate of organ donation is the family disapproval of organ donation. The researches show that 67% of the population in Turkey has a positive attitudes toward organ donation [5], but the reality is that only 0.5% of the population holds an organ donation card [6]. Likewise, based on public opinion surveys, 75% of the population states that they will donate a relative’s organs; however, the actual donation rate is 24% [5]. These findings indicate that many people have positive attitudes toward organ donation in theory, but when the request is actually made, very few consent to organ donation. The organ shortage increases the importance of understanding the public’s attitudes toward organ donation. For this reason, studies that determine the demographic factors, beliefs, and attitudes regarding organ donation are being undertaken. In all Western countries and in Turkey, laws mandate that the deceased person’s family must consent to the donation, even if the person indicated their willingness to donate his or her organs previously. Research among families who denied the request to donate their loved one’s organs indicate that 50% would change their decisions given a second chance to consent to the donation [7]. In Turkey in 2015, 1969 brain deaths were recorded; 472 families (24%) gave consent for donation and 1497 families (76%) refused donation [6]. It is, therefore, very important to identify barriers to consent and analyze the families’ attitudes toward donation, especially in cases where the deceased family member has expressed his or her willingness to be an organ donor. To this end, we compared families who consented to donation with those who refused and analyzed the factors that affected their decisions. This is the first study to be carried out with both donor and nondonor families that analyzes the factors influencing the families’ decisions. METHODS In Turkey, between 2010 and 2014, 101 family members who were approached regarding donating the organs of their relatives who died due to brain death. Sixty-five of these families consented to organ donation and 36 refused. A data collection tool was prepared based on the clinical experience of the researcher and relevant empirical and theoretical research [3,8e10]. A questionnaire was created to collect personal information, the willingness of the deceased person to donate, the approaches of health officers toward family, knowledge of brain death and the donation process, and the attitudes and beliefs of the participants about organ donation and transplantation. In addition, open-ended questions were asked, including, “What was the real reason while deciding to donate or not to donate organs?” This space enabled participants to share information not included in the closed-ended questions. Contact information for families of patients with brain death who were registered in the Organ and Tissue Information System between 2010 and 2014 were obtained from the Ministry of Health. The potential sample included 1520 families with complete contact information. These 1520 persons were called and asked to participate in this study. Among the 1520 contact, 695 persons could not be reached because their contact information was not updated or
CAN AND HOVARDAOGLU they did not respond. From an initial cohort of 365 persons who agreed to participate, 101 completed the survey, 65 members of the families who consented to organ donation, and 36 who refused organ donation. Questionnaires were sent to the participants via e-mail and the answer were returned in the same way.
RESULTS Sample Characteristics
Of the participants, 69.3% were male and their average age was 38.7 10.3 years. Of the potential organ donors, 57.4% were male and the average age was 51.2 18.3 years. The causes of death were motor vehicle accident (10.9%), gunshot (6.9%), other head trauma (8.9%), cerebrovascular event (48.5%), cardiovascular event (3%), and cerebral anoxia (21.8%). Bivariate Analysis of Family Decision
Table 1 shows variables with a meaningful relation with donation decision and frequency distributions. To analyze the significant relations among variables, the c2 method was used. There is a strong relation between the attitude of the family toward donation and the willingness of the deceased person to be a donor. If the willingness of the deceased person is known, the family respects this decision. However, Table 1. Variables Presenting a Relation With Family Decision Family Decision Donor
Nondonor
Total
c2
Deceased’s wishes Donate organs 26 0 26 20.6* Not donate organs 0 1 1 Wishes not known 39 35 74 The sufficiency of the time during decision-making process Sufficient 54 20 74 9* Insufficient 11 16 27 The perception of brain death as death Yes 57 20 77 13.2* No 8 16 24 The contradiction of the concept of brain death with moral values and religious beliefs Yes 5 9 14 5.8* No 60 27 87 Being aware of the loss of a relative during decision-making process Yes 62 27 89 9.2* No 3 9 12 Not preferring the deformation of body integrity Yes 26 24 50 6.6* No 39 12 51 Religious problems Yes 24 22 46 5.5* No 41 14 55 The attitudes of health officers Satisfied 43 18 61 4.6* Complainant 22 18 40 Looking back on the decision Donate 62 18 80 28.9* Not donate 3 18 21 *P < .05.
DONATING AND NONDONATING FAMILIES
the issue of organ donation is not generally talked about with the family, which is an important finding; nearly threefourths of respondents had never talked about organ donation with the deceased and did not know that person’s wishes. If the preference of the person about organ donation is talked while the person is alive and the family is also aware of this preference, it affects the decision of the family positively. If the opinion of the person about organ donation is not known, this affects the decision of donation negatively (c2 [df ¼ 2] ¼ 20.6; P < .05). The other important variable that affects the attitude of the family is giving them sufficient time to think during the decision-making process; 44% of nondonor respondents perceived the time as insufficient, and only 17% of donor respondents perceived the time as insufficient (c2 [df ¼ 1] ¼ 9; P < .05). The average times given to families consenting to organ donation is 8.28 hours, and the average time given to the families not consenting to organ donation is 10.42 hours. Although more time was given to the refusing group, the families perceived the amount of time provided for decision making as insufficient, which shows that each family has different dynamics and sufficient time is required to be given for decision making until the family feels ready for this decision. Eighty percent of the donor respondents and 86% of the nondonor respondent stated that the brain death was explained to them and they understood the meaning of brain death. However, 87% of donor respondents and 55% of nondonor respondents said that death occurs in case of brain death (c2 [df ¼ 1] ¼ 13.2; P < .05). In addition, 7% of donor respondents and 25% of nondonor respondents said that the concept of brain death contradicts their moral values and religious beliefs (c2 [df ¼ 1] ¼ 5.8; P < .05). There are significant differences among the groups in terms of religious beliefs (c2 [df ¼ 1] ¼ 5.5; P < .05) and not preferring the deformation of the body integrity based on these beliefs (c2 [df ¼ 1] ¼ 6.6; P < .05). The belief toward the protection of body integrity based on religion negatively affects the attitude of the family. In addition, it is observed that the probability of the participants who perceive the attitudes of hospital staff member (ie, a doctor, resident, or nurse) positively to give consent for donation is higher than the participants who perceive the attitudes of hospital staff member negatively (c2 [df ¼ 1] ¼ 4.6; P < .05). The respondents were asked if they would make the same decision about organ donation today as they did when their relatives died. More than 95% of the donor respondents said they would make the same decision, compared with 50% of the nondonor respondents (c2 [df ¼ 1] ¼ 28.9; P < .05). Qualitative Analysis of Family Decision
The data obtained from the open-ended question were analyzed with content analysis to determine main arguments. After analysis by 2 reviewers, coding was made based on concepts obtained from data and then these codes were
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combined and categorized. To determine the consistency between the encodings made by the reviewers, the Cohen kappa consistency test was used (Table 2). The results show that there is perfect consistency between the findings of 2 reviewers (k ¼ 0.92; P < .05). These findings were presented within the framework of categories and representative answers from participants are included after each argument. Donor Families
When the categories of the reason for the decision of donation were analyzed based on the family’s decision of donation, it was observed that 75.9% of the families who gave consent for the donation, had prosocial behavior tendencies (e.g., “We lost our hope but there are hopeful people and they could have been happy” [female, 26]); 24.1% of their deceased relatives expressed willingness to donate when they were alive or the members of the families thought that their relatives could have preferred to donate their organs (e.g., “My father could have preferred this, he could have donated his organs,” [female, 29]). Nondonor Families
Based on our data analysis, the families’ reasons to refuse organ donation were grouped into four main themes, including the wishes of the deceased person, suspicions about the concept of brain death, religious beliefs, and the attitudes of health care providers. Theme 1. Deceased’s Wishes About Organ Donation. Sixty percent of the donor families and 89% of the nondonor families stated that they did not know the opinions of their relatives about organ donation. In addition, the number of organ donation card holders is only 9.2% (n ¼ 4) and all of these persons donated their organs. Of the participants who refused to consent to organ donation, 2.7% (n ¼ 1) stated that their deceased relatives decided not to donate their organs; and 13% of the nondonor respondents also stated that they did not know the opinions of their relatives about organ donation (eg, “My relative did not have such kind of desire so we were undecided” [male, 36]). If the deceased’s wishes are not known, it creates uncertainty for the family members during decision-making process, which also tends to result in a negative decision. Theme 2. The Suspicions About The Concept of Brain Death. Of the nondonor respondents, 26.1% emphasized that they did not want to donate the organs of their relatives Table 2. Consistency Between the Reviewers While Evaluating the Reasons of the Decisions Given by the Participants
Prosocial behavior The decision of the deceased person Prohibitive religious beliefs Dissatisfaction from health professionals Misunderstood brain death Not knowing the deceased’s wishes *P < .05.
n
%
44 18 5 5 6 3
54.3 22.2 6.2 6.2 7.4 3.7
Kappa (k)
P
0.92
.00*
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because they had suspicions about the concept of brain death. In case of brain death, because somatic death (body death) does not occur, participants state that it is very difficult to accept the death of the person; the image of death that readily comes to mind is heart and respiratory arrest and a cold body. However, with brain death, there is a warm body that breathes and has a beating heart (with the help of a machine; e.g., “When s/he is still alive, can s/he regarded as death? We certainly know that s/he will not revive after brain death. However, if the heart is beating, how can s/he regarded as death?” [male, 37]). The concept of brain death is confused with the concepts of vegetative state and coma, which makes the acceptance of death difficult (e.g., “It is very disturbing to be unsure. We think people, who sleep for years and awaken, in the world. We feel ourselves disturbed.” [male, 44]). Because the concept of death in the minds of families does not coincide with the current medical criteria, this makes the acceptance of death difficult in cases of brain death, which also results in negative decisions about organ donation. Theme 3. Religious Beliefs. Of the nondonor respondents, 21.7% emphasized religious beliefs and stated that because the organ donation was not compatible with their religious beliefs, they did not consent to donation. It was observed that the most widespread religious belief cited by nondonor participants was the belief to preserve body integrity for life after death (e.g., “The mother of the child stated that ’God gave him/her to us and to the world as one single piece and I want to leave him/her to the soil as one single piece’. We will never permit the deformation of his/her body” [male, 37]). Another important religious belief shaping the attitudes toward organ donation is fatalism, which means that all events were determined previously. The fatalist typically believes that organ donation is unnecessary and it is against the will of divine creator. For this reason, they do not consent to donate the organs of their relatives (e.g., “Nobody gives life to anyone but only helps a person to spend a comfortable life. The life starts on the day when we were born and the lifetime is certain. We cannot affect the general will” [male, 47]). Theme 4. The attitudes of health care providers. Of the nondonor participants, 21.7% stated that they refused owing to negative attitudes of the hospital staff member. The decision surrounding of organ donation is a difficult, sensitive, and complicated process for the members of the family who lost a person that they loved and who was mourning for that person. The participants state that, if hospital staff members behave and communicate in a more emphatic, understandable, informative, and sensitive way, this will help them to cope with what they are experiencing. In addition, in this difficult and complicated process, when the health professionals did not behave in a sensitive and emphatic way and they were not sufficiently interested in to decrease their grief, this resulted in negative decision (eg, “The behaviors of the hospital staff toward us and other relatives of the patients affected me. I thought that these organs might have been transplanted to
CAN AND HOVARDAOGLU
a person like these hospital staff and I gave up donating organs” [male, 37]). DISCUSSION
This study sought to determine why some families gave consent for organ donation while others did not give consent in Turkey, where the family refusal rate is 75%. No previous study has been undertaken regarding this issue. The findings indicated that there were some differences among the donor and nondonor respondents, which could help to explain the reason why some families did not give consent for organ donation. Like in previous studies on family approval for organ donation [3,8e11], the analyses primarily proved that there was a strong relation between the attitude of the family toward donation and the deceased’s wishes. However, the findings show that the organ donation is not generally discussed among family members, who then have to make a decision in case of a crisis. In case of a crisis, if the family has a reference for decision (in this case deceased’s wishes), the tension and uncertainties decrease [12], but if there is no such frame of reference, the family tends to use simple decision rules, called as heuristic, instead of using a more logical decisionmaking process [13]. Therefore, when the members of the family do not know the deceased’s wishes and they have to make a decision with the emotional stress during mourning period, they can ultimately refuse. Second, dissatisfaction with the health care system is another important factor that affects the family in the decision-making process. In previous studies, support from health care professionals was defined as an important factor for the decision of organ donation. The distrust toward the health professionals and the communication problems cause negative results in terms of family approval. By giving positive emotional support, accepting the emotions of the family, giving all necessary medical information, and meeting the needs of family in terms of spending time with the patient, health care professionals make the family believe that all necessary treatments are applied for the patient, which helps the family to accept the death. The sense of trust between the health care professionals and the family causes positive results in terms of the decision for organ donation. In their studies about the experiences of families deciding for organ donation after brain death, Kesselring et al [14] defined the behavior types of the health care professionals in 2 categories, an “individual-focused approach” and “organ-focused approach,” based on the statements from participants. The individual-focused behavior type is defined as follows: By taking the needs of both the patient and the members of the family into account, the health care professionals feel empathy; the needs for consultancy, being informed, silence, and rest are met in terms of the family; and the family believes that the patient is treated carefully. The organ-focused behavior type is defined as the approval-based communication for organ donation or the protection of organs, during which only
DONATING AND NONDONATING FAMILIES
medical procedures are applied. When health care professionals behaved in an individual-focused way, the members of the families reported nontraumatic experiences and it affected the decision for organ donation positively. However, it was observed that the organ-focused approach caused traumatic experiences and negative results for the decision. It was supported in related studies with the findings that there was a general dissatisfaction about the approach of health care professionals, and people wanted to meet with health professionals who are empathetic and thoughtful, give information regularly, and are more sensitive in their communication. This shows that the patients and the relatives of the patients expect individual-based behaviors. However, when health care professionals behave in a nonempathetic and mechanistic manner, it shows that the health professionals have a dehumanization attitude. Dehumanization means that one group defines the other group by isolating them from their humanistic features [15,16]. Mechanical dehumanization occurs when people are evaluated as cold, passive, and machine-like and they are not differentiated based on their qualifications in the fields of technology and medicine [17]. The certain features of dehumanization in the field of modern medicine are lack of personal care and emotional support, addiction to technology, lack of human sincerity and touch, emphasizing efficiency and standardization, ignoring personal experiences for objectivity, producing information based on technology, and intervening passive individuals by ignoring autocontrol. This type of dehumanization is also defined as “objectification” [18]. Objectification is not an attitude developed by health professionals with malintention or consciously, but it is an attitude developed unconsciously and unintentionally as a result of the interaction of current widespread social applications [19]. It is widely accepted in medicine that, because an objectification attitude is beneficial for health care professionals in terms of making difficult decisions easier, protecting from professional burnout, and coping with stress, it is necessary to a certain extent for giving efficient medical care [20]. However, the perception of patients as cold and nonliving objects isolated from their social and emotional contexts, the definition of patients with the name of the illness or the unhealthy part of the body and the removal of emotional processes, enabling health care professionals to realize the humanistic sides of the patients cause negative effects on the patients and the members of the families. The perception of dehumanization decreases the satisfaction related with service given by health care professionals, the reliability toward health professionals, the active participation of patient and his or her relatives in the diagnosis and treatment processes, and the adaptation of the patient to the treatment [21]. In light of the findings in the literature, the negative effect of the family members dissatisfaction with health care professionals on the decision for organ donation can linked to the health care professional’s objectification of the patient and his or her relatives, as well as mechanic behaviors of health professionals and a lack of empathy. For this reason, and based on our
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findings, public education and social awareness are not sufficient to increase organ donation rates. It is also necessary to improve the communication between doctor and patient or relatives to increase the satisfaction of patients, to increase the awareness of health professionals on the effect of their behavior. It is also important to prevent the dehumanization and objectification of these patients. Moreover, it was observed in this study that, when the transplant coordination team gave the family a reasonable amount of time to accept the death and make a decision without putting any pressure on them toward the decision during the donation request period, the decision of the family became positive. Previous studies have indicated that an unreasonable amount of time was the main reason of dissatisfaction during the donation process for the families, who gave consent or did not give consent for donation, and making a request for donation and giving information about death to the deceased person’s relatives at the same time affected the decision for donation negatively [21]. Although a certain period of time is not stated in the studies, it is observed that families need a long period of time for accepting the death before an option for organ donation is offered and this is a wide range of time, from 24 hours to 1 week [22]. Furthermore, it is widely accepted that the family, who experience different stages of mourning period (shock, denial, anger, negotiation, depression, and acceptance), should evaluate the situation before talking about organ donation, and the possibility of donation should be discussed when the family experiences the last stage of the mourning period (acceptance) [23]. However, this is not always possible because time is limited in terms of the medical adaptation and usability of the organ, which is a significant problem in the organ supply process. In terms of the families who gave consent for organ donation, the rate of the acceptance of death was higher, the time given for decision was perceived as sufficient and the pressure on them was lower. In this study, it is emphasized that timing is an important factor that affects the family’s willingness to consent to organ donation. Finally, in this study, it was observed that if the concept of brain death was not explained sufficiently to family members and uncertainty regarding the death increased, which affected the decision of the family negatively. The psychology literature about the family approval for organ donation puts forward that the signs of life of the deceased person are not compatible with the information, belief, and experience of the families about death, which creates a cognitive dissonance (an emotional situation when two attitudes or cognitions are not compatible with each other or there is a conflict between open behaviors and beliefs), and this cognitive dissonance makes the acceptance of death difficult [24]. Like in the explanation of cognitive dissonance, although the death is declared to the members of the family based on brain death criteria, because the body seems alive, it creates an illusion that the person is still alive. This illusion can cause families to believe they are consenting to
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the harvest of the organs from a living person and that their decision ends the life of the person earlier [25]. To ease family members’ concerns, the transplant coordination team should explain the terms associated with organ donation process, such as “brain death” and “life support,” to the family members. In approaching a family about organ donation, the transplant coordination team should focus on how the family understands the concept of brain death (Does the family think that there is no hope for the patient and the patient will never get well? Does the family think that the patient is really dead?) and what the results of the brain death are for the family, instead of focusing the definition of brain death made by the family. CONCLUSIONS
This study analyzed attitudes toward organ donation and revealed many important variables affecting the decision of the families. In general, although many persons have positive attitudes toward organ donation, if a family has to make a decision in a time of crisis and in case of negative factors in the process, this negatively affects the decision of organ donation. Dissatisfaction with the health care system and the approach of health professionals toward the family in particular influenced the family’s decision. However, there is no efficient donation sustainability in Turkey based on scientific research and there is no widely accepted protocol. In addition, organ transplant teams are not sufficiently trained about the request process, and there is no system to follow or evaluate the activities of organ transplant team. In Spain, where there are the highest organ donation rates in the world, the donation procedures are shaped carefully, including the issues identified and discussed herein. An efficient protocol for organ donation requests should focus on the communication with the family of the patient, the potential organ donor, from the first communication during the admission of the patient in the hospital to the communication about brain death and request for organ donation. Health care professionals should be continuously trained about this protocol. REFERENCES [1] Abecassis M, Bartlett ST, Collins AJ, Davis CL, Delmonico FL, Friedewald JJ, et al. Kidney transplantation as primary therapy for end-stage renal disease: A National Kidney Foundation/Kidney Disease Outcomes Quality Initiative (NKF/ KDOQITM) conference. Clin J Am Soc Nephrol 2008;3:471e80. [2] Martınez JM, López JS, Martín A, Martín MJ, Scandroglio B, Martín JM. Organ donation and family decision-making within the Spanish donation system. Soc Sci Med 2001;53:405e21. [3] Domínguez-Gil B, Delmonico FL, Shaheen FA, Matesanz R, O’Connor K, Minina M, et al. The critical pathway for deceased
CAN AND HOVARDAOGLU donation: reportable uniformity in the approach to deceased donation. Transpl Int 2011;24:373e8. [4] International Registry in Organ Donation and Transplantation (IRODaT). Database. http://www.irodat.org; 2016. Accessed 10.05.2016. [5] Turkish Transplant Coordinators Association (ONKOD). Database. http://www.onkod.org.tr; 2016. Accessed 01.15.2016. [6] Turkey Organ Donation Registry (TODS). Database. https:// organgiris.saglik.gov.tr; 2015. Accessed 01.15.2016. [7] DeJong W, Franz HG, Wolfe SM, Nathan H, Payne D, Reitsma W, Beasley C. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care 1998;7:13. [8] Marck CH, Neate SL, Skinner MR, Dwyer BM, Hickey BB, D’Costa R, et al. Factors relating to consent for organ donation: prospective data on potential organ donors. Intern Med J 2015;45:40e7. [9] Jacoby L, Jaccard J. Perceived support among families deciding about organ donation for their loved ones: donor vs nondonor next of kin. Am J Crit Care 2010;19:e52e61. [10] Simpkin AL, Robertson LC, Barber VS, Young JD. Modifiable factors influencing relatives’ decision to offer organ donation: systematic review. BMJ 2009;338:b991. [11] Rodrigue JR, Cornell DL, Krouse J, Howard RJ. Family initiated discussions about organ donation at the time of death. Clin Transpl 2010;24:493e9. [12] Etzioni A. Normative-affective factors: toward a new decision-making model. J Econ Psych 1988;9:125e50. [13] Bohner G, Moskowitz GB, Chaiken S. The interplay of heuristic and systematic processing of social information. Eur Rev Soc Psych 1995;6:33e68. [14] Kesselring A, Kainz M, Kiss A. Traumatic memories of relatives regarding brain death, request for organ donation and interactions with professionals in the ICU. Am Journal Transpl 2007;7:211e7. [15] Zimbardo P. Lucifer effect. Oxford: Blackwell Publishing Ltd, 2007. [16] Oliver M, Ahmed A, Woywodt A. Donating in good faith or getting into trouble Religion and organ donation revisited. World J Transpl 2012;2:69. [17] Haslam N, Loughnan S. Dehumanization and infrahumanization. Ann Rev Psych 2014;65:399e423. [18] Barnard A. On the relationship between technique and dehumanization. Adv Tech Caring Nurs 2001:96e105. [19] Haque OS, Waytz A. Dehumanization in medicine causes, solutions, and functions. Perspect Psych Sci 2012;7:176e86. [20] Vaes J, Muratore M. Defensive dehumanization in the medical practice: A cross-sectional study from a health care worker’s perspective. Br J Soc Psych 2013;52:180e90. [21] West R, Burr G. Why families deny consent to organ donation. Aust Crit Care 2002;15:27e32. [22] Kometsi K, Louw J. Deciding on cadaveric organ donation in black African families. Clin Transpl 1999;13:473e8. [23] Niles P, Mattice B. The timing factor in the consent process. J Transpl Coord 1996;6:84e7. [24] Sanner M. Peoples’ attitudes and reactions to organ donation. Mortality 2006;11:133e50. [25] Conesa C, Ríos A, Ramírez P, Cantéras M, Rodríguez MM, Parrilla P. Redes Temáticas de Investigación Cooperativa: Estrategias para Optimizar los Resultados en Donacíon y Trasplante, Red C03/03. Attitudes toward organ donation in rural areas of Southeastern Spain. Transplant Proc 2006;38:866e8.
ABSTRACT Based on public opinion surveys, although 75% of people state that they would donate the organs of one of their relatives, in reality, the rate of the people who donate the organs of their relatives is 24%. To decrease the organ shortage, the key point is to understand the difference between intention and real behavior. For this reason, in this study, analyses of variables related to the potential organ donor families’ decisions of approval or refusal for organ harvesting were analyzed. The interviews were conducted with 101 families who made a decision about organ donation between 2010 and 2014. The variables, strongly related with the family decision, are the wishes of the deceased persons about donation, suspicions regarding brain death, the desire to protect body integrity, and the satisfaction levels of the families with the approaches of medical personnel. The findings, obtained from qualitative data, also support the quantitative data. The results indicate that both education of the public about maintaining a positive attitude toward organ donation and education of health professionals can be key factors in decreasing the organ shortage.
N
OWADAYS, organ transplantation is a vital treatment method for treating organ failure. Thanks to the developments in organ harvesting, preserving, transplantation techniques, and immunosuppressive medicine, the treatment of organ transplantation increases life expectancy among recipients greatly [1]. This treatment also enables an important increase in life quality in terms of physical and emotional life, social relations, and professional development [2]. Although there is a rapid advancement in terms of surgical techniques for organ transplantation, the number of donors is insufficient. In view of ever-increasing demand, many countries continue to make efforts to increase the rates of cadaveric organ donation [3]. The efforts toward increasing the numbers of organ donation to transplant organs from deceased persons has been limited in Turkey for many years; to improve the determination of potential donors, the National Organ and Tissue Transplantation Coordination System (UKS) was established in 2000. Thereafter, and affiliated with this system, the National Organ and Tissue Transplantation Coordination Center and nine Regional Coordination Centers were established. With the establishment of this system, the donor rate per million population increased from 0.7% in 2000 to 7.2% in 2016 [4]. Moreover, with the ª 2017 Elsevier Inc. All rights reserved. 230 Park Avenue, New York, NY 10169
Transplantation Proceedings, 49, 1969e1974 (2017)
establishment of UKS, including multiple coordination levels (hospital, regional and national), donor identification, donor management, and approaches to family members became possible for qualified staff. Today, 60% of health professionals working to coordinate organ transplantation are nurses and 40% are doctors (anesthetist or intensive care expert) [5]. However, because the rates of cadaveric organ donation are lower than the rates of patients waiting for an organ, encouraging living donation in Turkey is an important initiative; indeed, 80% of transplantations are made from living donors today. Despite efforts to expand organ donation, the number of patients awaiting transplantation (22,330 in 2015) far outpaces the number of donations (3917 in 2015) [6]. In Turkey, cadaveric organ donation is possible in case of brain death, during which cardiorespiratory support is sustained. Potential donors are defined as patients whose brain death is confirmed or who have the high possibility of brain death. In general, families are approached regarding organ donation by the organ transplantation coordinator after the
Funded by the Turkish Transplant Foundation. *Address correspondence to Fatma Can, 52nd Street No. 5/9, 06500, Bahcelievler, Ankara, Turkey. E-mail: [email protected] 0041-1345/17 https://doi.org/10.1016/j.transproceed.2017.09.032
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primary doctor treating the patient informs the family about brain death. One of the greatest obstacles to increasing the rate of organ donation is the family disapproval of organ donation. The researches show that 67% of the population in Turkey has a positive attitudes toward organ donation [5], but the reality is that only 0.5% of the population holds an organ donation card [6]. Likewise, based on public opinion surveys, 75% of the population states that they will donate a relative’s organs; however, the actual donation rate is 24% [5]. These findings indicate that many people have positive attitudes toward organ donation in theory, but when the request is actually made, very few consent to organ donation. The organ shortage increases the importance of understanding the public’s attitudes toward organ donation. For this reason, studies that determine the demographic factors, beliefs, and attitudes regarding organ donation are being undertaken. In all Western countries and in Turkey, laws mandate that the deceased person’s family must consent to the donation, even if the person indicated their willingness to donate his or her organs previously. Research among families who denied the request to donate their loved one’s organs indicate that 50% would change their decisions given a second chance to consent to the donation [7]. In Turkey in 2015, 1969 brain deaths were recorded; 472 families (24%) gave consent for donation and 1497 families (76%) refused donation [6]. It is, therefore, very important to identify barriers to consent and analyze the families’ attitudes toward donation, especially in cases where the deceased family member has expressed his or her willingness to be an organ donor. To this end, we compared families who consented to donation with those who refused and analyzed the factors that affected their decisions. This is the first study to be carried out with both donor and nondonor families that analyzes the factors influencing the families’ decisions. METHODS In Turkey, between 2010 and 2014, 101 family members who were approached regarding donating the organs of their relatives who died due to brain death. Sixty-five of these families consented to organ donation and 36 refused. A data collection tool was prepared based on the clinical experience of the researcher and relevant empirical and theoretical research [3,8e10]. A questionnaire was created to collect personal information, the willingness of the deceased person to donate, the approaches of health officers toward family, knowledge of brain death and the donation process, and the attitudes and beliefs of the participants about organ donation and transplantation. In addition, open-ended questions were asked, including, “What was the real reason while deciding to donate or not to donate organs?” This space enabled participants to share information not included in the closed-ended questions. Contact information for families of patients with brain death who were registered in the Organ and Tissue Information System between 2010 and 2014 were obtained from the Ministry of Health. The potential sample included 1520 families with complete contact information. These 1520 persons were called and asked to participate in this study. Among the 1520 contact, 695 persons could not be reached because their contact information was not updated or
CAN AND HOVARDAOGLU they did not respond. From an initial cohort of 365 persons who agreed to participate, 101 completed the survey, 65 members of the families who consented to organ donation, and 36 who refused organ donation. Questionnaires were sent to the participants via e-mail and the answer were returned in the same way.
RESULTS Sample Characteristics
Of the participants, 69.3% were male and their average age was 38.7 10.3 years. Of the potential organ donors, 57.4% were male and the average age was 51.2 18.3 years. The causes of death were motor vehicle accident (10.9%), gunshot (6.9%), other head trauma (8.9%), cerebrovascular event (48.5%), cardiovascular event (3%), and cerebral anoxia (21.8%). Bivariate Analysis of Family Decision
Table 1 shows variables with a meaningful relation with donation decision and frequency distributions. To analyze the significant relations among variables, the c2 method was used. There is a strong relation between the attitude of the family toward donation and the willingness of the deceased person to be a donor. If the willingness of the deceased person is known, the family respects this decision. However, Table 1. Variables Presenting a Relation With Family Decision Family Decision Donor
Nondonor
Total
c2
Deceased’s wishes Donate organs 26 0 26 20.6* Not donate organs 0 1 1 Wishes not known 39 35 74 The sufficiency of the time during decision-making process Sufficient 54 20 74 9* Insufficient 11 16 27 The perception of brain death as death Yes 57 20 77 13.2* No 8 16 24 The contradiction of the concept of brain death with moral values and religious beliefs Yes 5 9 14 5.8* No 60 27 87 Being aware of the loss of a relative during decision-making process Yes 62 27 89 9.2* No 3 9 12 Not preferring the deformation of body integrity Yes 26 24 50 6.6* No 39 12 51 Religious problems Yes 24 22 46 5.5* No 41 14 55 The attitudes of health officers Satisfied 43 18 61 4.6* Complainant 22 18 40 Looking back on the decision Donate 62 18 80 28.9* Not donate 3 18 21 *P < .05.
DONATING AND NONDONATING FAMILIES
the issue of organ donation is not generally talked about with the family, which is an important finding; nearly threefourths of respondents had never talked about organ donation with the deceased and did not know that person’s wishes. If the preference of the person about organ donation is talked while the person is alive and the family is also aware of this preference, it affects the decision of the family positively. If the opinion of the person about organ donation is not known, this affects the decision of donation negatively (c2 [df ¼ 2] ¼ 20.6; P < .05). The other important variable that affects the attitude of the family is giving them sufficient time to think during the decision-making process; 44% of nondonor respondents perceived the time as insufficient, and only 17% of donor respondents perceived the time as insufficient (c2 [df ¼ 1] ¼ 9; P < .05). The average times given to families consenting to organ donation is 8.28 hours, and the average time given to the families not consenting to organ donation is 10.42 hours. Although more time was given to the refusing group, the families perceived the amount of time provided for decision making as insufficient, which shows that each family has different dynamics and sufficient time is required to be given for decision making until the family feels ready for this decision. Eighty percent of the donor respondents and 86% of the nondonor respondent stated that the brain death was explained to them and they understood the meaning of brain death. However, 87% of donor respondents and 55% of nondonor respondents said that death occurs in case of brain death (c2 [df ¼ 1] ¼ 13.2; P < .05). In addition, 7% of donor respondents and 25% of nondonor respondents said that the concept of brain death contradicts their moral values and religious beliefs (c2 [df ¼ 1] ¼ 5.8; P < .05). There are significant differences among the groups in terms of religious beliefs (c2 [df ¼ 1] ¼ 5.5; P < .05) and not preferring the deformation of the body integrity based on these beliefs (c2 [df ¼ 1] ¼ 6.6; P < .05). The belief toward the protection of body integrity based on religion negatively affects the attitude of the family. In addition, it is observed that the probability of the participants who perceive the attitudes of hospital staff member (ie, a doctor, resident, or nurse) positively to give consent for donation is higher than the participants who perceive the attitudes of hospital staff member negatively (c2 [df ¼ 1] ¼ 4.6; P < .05). The respondents were asked if they would make the same decision about organ donation today as they did when their relatives died. More than 95% of the donor respondents said they would make the same decision, compared with 50% of the nondonor respondents (c2 [df ¼ 1] ¼ 28.9; P < .05). Qualitative Analysis of Family Decision
The data obtained from the open-ended question were analyzed with content analysis to determine main arguments. After analysis by 2 reviewers, coding was made based on concepts obtained from data and then these codes were
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combined and categorized. To determine the consistency between the encodings made by the reviewers, the Cohen kappa consistency test was used (Table 2). The results show that there is perfect consistency between the findings of 2 reviewers (k ¼ 0.92; P < .05). These findings were presented within the framework of categories and representative answers from participants are included after each argument. Donor Families
When the categories of the reason for the decision of donation were analyzed based on the family’s decision of donation, it was observed that 75.9% of the families who gave consent for the donation, had prosocial behavior tendencies (e.g., “We lost our hope but there are hopeful people and they could have been happy” [female, 26]); 24.1% of their deceased relatives expressed willingness to donate when they were alive or the members of the families thought that their relatives could have preferred to donate their organs (e.g., “My father could have preferred this, he could have donated his organs,” [female, 29]). Nondonor Families
Based on our data analysis, the families’ reasons to refuse organ donation were grouped into four main themes, including the wishes of the deceased person, suspicions about the concept of brain death, religious beliefs, and the attitudes of health care providers. Theme 1. Deceased’s Wishes About Organ Donation. Sixty percent of the donor families and 89% of the nondonor families stated that they did not know the opinions of their relatives about organ donation. In addition, the number of organ donation card holders is only 9.2% (n ¼ 4) and all of these persons donated their organs. Of the participants who refused to consent to organ donation, 2.7% (n ¼ 1) stated that their deceased relatives decided not to donate their organs; and 13% of the nondonor respondents also stated that they did not know the opinions of their relatives about organ donation (eg, “My relative did not have such kind of desire so we were undecided” [male, 36]). If the deceased’s wishes are not known, it creates uncertainty for the family members during decision-making process, which also tends to result in a negative decision. Theme 2. The Suspicions About The Concept of Brain Death. Of the nondonor respondents, 26.1% emphasized that they did not want to donate the organs of their relatives Table 2. Consistency Between the Reviewers While Evaluating the Reasons of the Decisions Given by the Participants
Prosocial behavior The decision of the deceased person Prohibitive religious beliefs Dissatisfaction from health professionals Misunderstood brain death Not knowing the deceased’s wishes *P < .05.
n
%
44 18 5 5 6 3
54.3 22.2 6.2 6.2 7.4 3.7
Kappa (k)
P
0.92
.00*
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because they had suspicions about the concept of brain death. In case of brain death, because somatic death (body death) does not occur, participants state that it is very difficult to accept the death of the person; the image of death that readily comes to mind is heart and respiratory arrest and a cold body. However, with brain death, there is a warm body that breathes and has a beating heart (with the help of a machine; e.g., “When s/he is still alive, can s/he regarded as death? We certainly know that s/he will not revive after brain death. However, if the heart is beating, how can s/he regarded as death?” [male, 37]). The concept of brain death is confused with the concepts of vegetative state and coma, which makes the acceptance of death difficult (e.g., “It is very disturbing to be unsure. We think people, who sleep for years and awaken, in the world. We feel ourselves disturbed.” [male, 44]). Because the concept of death in the minds of families does not coincide with the current medical criteria, this makes the acceptance of death difficult in cases of brain death, which also results in negative decisions about organ donation. Theme 3. Religious Beliefs. Of the nondonor respondents, 21.7% emphasized religious beliefs and stated that because the organ donation was not compatible with their religious beliefs, they did not consent to donation. It was observed that the most widespread religious belief cited by nondonor participants was the belief to preserve body integrity for life after death (e.g., “The mother of the child stated that ’God gave him/her to us and to the world as one single piece and I want to leave him/her to the soil as one single piece’. We will never permit the deformation of his/her body” [male, 37]). Another important religious belief shaping the attitudes toward organ donation is fatalism, which means that all events were determined previously. The fatalist typically believes that organ donation is unnecessary and it is against the will of divine creator. For this reason, they do not consent to donate the organs of their relatives (e.g., “Nobody gives life to anyone but only helps a person to spend a comfortable life. The life starts on the day when we were born and the lifetime is certain. We cannot affect the general will” [male, 47]). Theme 4. The attitudes of health care providers. Of the nondonor participants, 21.7% stated that they refused owing to negative attitudes of the hospital staff member. The decision surrounding of organ donation is a difficult, sensitive, and complicated process for the members of the family who lost a person that they loved and who was mourning for that person. The participants state that, if hospital staff members behave and communicate in a more emphatic, understandable, informative, and sensitive way, this will help them to cope with what they are experiencing. In addition, in this difficult and complicated process, when the health professionals did not behave in a sensitive and emphatic way and they were not sufficiently interested in to decrease their grief, this resulted in negative decision (eg, “The behaviors of the hospital staff toward us and other relatives of the patients affected me. I thought that these organs might have been transplanted to
CAN AND HOVARDAOGLU
a person like these hospital staff and I gave up donating organs” [male, 37]). DISCUSSION
This study sought to determine why some families gave consent for organ donation while others did not give consent in Turkey, where the family refusal rate is 75%. No previous study has been undertaken regarding this issue. The findings indicated that there were some differences among the donor and nondonor respondents, which could help to explain the reason why some families did not give consent for organ donation. Like in previous studies on family approval for organ donation [3,8e11], the analyses primarily proved that there was a strong relation between the attitude of the family toward donation and the deceased’s wishes. However, the findings show that the organ donation is not generally discussed among family members, who then have to make a decision in case of a crisis. In case of a crisis, if the family has a reference for decision (in this case deceased’s wishes), the tension and uncertainties decrease [12], but if there is no such frame of reference, the family tends to use simple decision rules, called as heuristic, instead of using a more logical decisionmaking process [13]. Therefore, when the members of the family do not know the deceased’s wishes and they have to make a decision with the emotional stress during mourning period, they can ultimately refuse. Second, dissatisfaction with the health care system is another important factor that affects the family in the decision-making process. In previous studies, support from health care professionals was defined as an important factor for the decision of organ donation. The distrust toward the health professionals and the communication problems cause negative results in terms of family approval. By giving positive emotional support, accepting the emotions of the family, giving all necessary medical information, and meeting the needs of family in terms of spending time with the patient, health care professionals make the family believe that all necessary treatments are applied for the patient, which helps the family to accept the death. The sense of trust between the health care professionals and the family causes positive results in terms of the decision for organ donation. In their studies about the experiences of families deciding for organ donation after brain death, Kesselring et al [14] defined the behavior types of the health care professionals in 2 categories, an “individual-focused approach” and “organ-focused approach,” based on the statements from participants. The individual-focused behavior type is defined as follows: By taking the needs of both the patient and the members of the family into account, the health care professionals feel empathy; the needs for consultancy, being informed, silence, and rest are met in terms of the family; and the family believes that the patient is treated carefully. The organ-focused behavior type is defined as the approval-based communication for organ donation or the protection of organs, during which only
DONATING AND NONDONATING FAMILIES
medical procedures are applied. When health care professionals behaved in an individual-focused way, the members of the families reported nontraumatic experiences and it affected the decision for organ donation positively. However, it was observed that the organ-focused approach caused traumatic experiences and negative results for the decision. It was supported in related studies with the findings that there was a general dissatisfaction about the approach of health care professionals, and people wanted to meet with health professionals who are empathetic and thoughtful, give information regularly, and are more sensitive in their communication. This shows that the patients and the relatives of the patients expect individual-based behaviors. However, when health care professionals behave in a nonempathetic and mechanistic manner, it shows that the health professionals have a dehumanization attitude. Dehumanization means that one group defines the other group by isolating them from their humanistic features [15,16]. Mechanical dehumanization occurs when people are evaluated as cold, passive, and machine-like and they are not differentiated based on their qualifications in the fields of technology and medicine [17]. The certain features of dehumanization in the field of modern medicine are lack of personal care and emotional support, addiction to technology, lack of human sincerity and touch, emphasizing efficiency and standardization, ignoring personal experiences for objectivity, producing information based on technology, and intervening passive individuals by ignoring autocontrol. This type of dehumanization is also defined as “objectification” [18]. Objectification is not an attitude developed by health professionals with malintention or consciously, but it is an attitude developed unconsciously and unintentionally as a result of the interaction of current widespread social applications [19]. It is widely accepted in medicine that, because an objectification attitude is beneficial for health care professionals in terms of making difficult decisions easier, protecting from professional burnout, and coping with stress, it is necessary to a certain extent for giving efficient medical care [20]. However, the perception of patients as cold and nonliving objects isolated from their social and emotional contexts, the definition of patients with the name of the illness or the unhealthy part of the body and the removal of emotional processes, enabling health care professionals to realize the humanistic sides of the patients cause negative effects on the patients and the members of the families. The perception of dehumanization decreases the satisfaction related with service given by health care professionals, the reliability toward health professionals, the active participation of patient and his or her relatives in the diagnosis and treatment processes, and the adaptation of the patient to the treatment [21]. In light of the findings in the literature, the negative effect of the family members dissatisfaction with health care professionals on the decision for organ donation can linked to the health care professional’s objectification of the patient and his or her relatives, as well as mechanic behaviors of health professionals and a lack of empathy. For this reason, and based on our
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findings, public education and social awareness are not sufficient to increase organ donation rates. It is also necessary to improve the communication between doctor and patient or relatives to increase the satisfaction of patients, to increase the awareness of health professionals on the effect of their behavior. It is also important to prevent the dehumanization and objectification of these patients. Moreover, it was observed in this study that, when the transplant coordination team gave the family a reasonable amount of time to accept the death and make a decision without putting any pressure on them toward the decision during the donation request period, the decision of the family became positive. Previous studies have indicated that an unreasonable amount of time was the main reason of dissatisfaction during the donation process for the families, who gave consent or did not give consent for donation, and making a request for donation and giving information about death to the deceased person’s relatives at the same time affected the decision for donation negatively [21]. Although a certain period of time is not stated in the studies, it is observed that families need a long period of time for accepting the death before an option for organ donation is offered and this is a wide range of time, from 24 hours to 1 week [22]. Furthermore, it is widely accepted that the family, who experience different stages of mourning period (shock, denial, anger, negotiation, depression, and acceptance), should evaluate the situation before talking about organ donation, and the possibility of donation should be discussed when the family experiences the last stage of the mourning period (acceptance) [23]. However, this is not always possible because time is limited in terms of the medical adaptation and usability of the organ, which is a significant problem in the organ supply process. In terms of the families who gave consent for organ donation, the rate of the acceptance of death was higher, the time given for decision was perceived as sufficient and the pressure on them was lower. In this study, it is emphasized that timing is an important factor that affects the family’s willingness to consent to organ donation. Finally, in this study, it was observed that if the concept of brain death was not explained sufficiently to family members and uncertainty regarding the death increased, which affected the decision of the family negatively. The psychology literature about the family approval for organ donation puts forward that the signs of life of the deceased person are not compatible with the information, belief, and experience of the families about death, which creates a cognitive dissonance (an emotional situation when two attitudes or cognitions are not compatible with each other or there is a conflict between open behaviors and beliefs), and this cognitive dissonance makes the acceptance of death difficult [24]. Like in the explanation of cognitive dissonance, although the death is declared to the members of the family based on brain death criteria, because the body seems alive, it creates an illusion that the person is still alive. This illusion can cause families to believe they are consenting to
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the harvest of the organs from a living person and that their decision ends the life of the person earlier [25]. To ease family members’ concerns, the transplant coordination team should explain the terms associated with organ donation process, such as “brain death” and “life support,” to the family members. In approaching a family about organ donation, the transplant coordination team should focus on how the family understands the concept of brain death (Does the family think that there is no hope for the patient and the patient will never get well? Does the family think that the patient is really dead?) and what the results of the brain death are for the family, instead of focusing the definition of brain death made by the family. CONCLUSIONS
This study analyzed attitudes toward organ donation and revealed many important variables affecting the decision of the families. In general, although many persons have positive attitudes toward organ donation, if a family has to make a decision in a time of crisis and in case of negative factors in the process, this negatively affects the decision of organ donation. Dissatisfaction with the health care system and the approach of health professionals toward the family in particular influenced the family’s decision. However, there is no efficient donation sustainability in Turkey based on scientific research and there is no widely accepted protocol. In addition, organ transplant teams are not sufficiently trained about the request process, and there is no system to follow or evaluate the activities of organ transplant team. In Spain, where there are the highest organ donation rates in the world, the donation procedures are shaped carefully, including the issues identified and discussed herein. An efficient protocol for organ donation requests should focus on the communication with the family of the patient, the potential organ donor, from the first communication during the admission of the patient in the hospital to the communication about brain death and request for organ donation. Health care professionals should be continuously trained about this protocol. REFERENCES [1] Abecassis M, Bartlett ST, Collins AJ, Davis CL, Delmonico FL, Friedewald JJ, et al. Kidney transplantation as primary therapy for end-stage renal disease: A National Kidney Foundation/Kidney Disease Outcomes Quality Initiative (NKF/ KDOQITM) conference. Clin J Am Soc Nephrol 2008;3:471e80. [2] Martınez JM, López JS, Martín A, Martín MJ, Scandroglio B, Martín JM. Organ donation and family decision-making within the Spanish donation system. Soc Sci Med 2001;53:405e21. [3] Domínguez-Gil B, Delmonico FL, Shaheen FA, Matesanz R, O’Connor K, Minina M, et al. The critical pathway for deceased
CAN AND HOVARDAOGLU donation: reportable uniformity in the approach to deceased donation. Transpl Int 2011;24:373e8. [4] International Registry in Organ Donation and Transplantation (IRODaT). Database. http://www.irodat.org; 2016. Accessed 10.05.2016. [5] Turkish Transplant Coordinators Association (ONKOD). Database. http://www.onkod.org.tr; 2016. Accessed 01.15.2016. [6] Turkey Organ Donation Registry (TODS). Database. https:// organgiris.saglik.gov.tr; 2015. Accessed 01.15.2016. [7] DeJong W, Franz HG, Wolfe SM, Nathan H, Payne D, Reitsma W, Beasley C. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care 1998;7:13. [8] Marck CH, Neate SL, Skinner MR, Dwyer BM, Hickey BB, D’Costa R, et al. Factors relating to consent for organ donation: prospective data on potential organ donors. Intern Med J 2015;45:40e7. [9] Jacoby L, Jaccard J. Perceived support among families deciding about organ donation for their loved ones: donor vs nondonor next of kin. Am J Crit Care 2010;19:e52e61. [10] Simpkin AL, Robertson LC, Barber VS, Young JD. Modifiable factors influencing relatives’ decision to offer organ donation: systematic review. BMJ 2009;338:b991. [11] Rodrigue JR, Cornell DL, Krouse J, Howard RJ. Family initiated discussions about organ donation at the time of death. Clin Transpl 2010;24:493e9. [12] Etzioni A. Normative-affective factors: toward a new decision-making model. J Econ Psych 1988;9:125e50. [13] Bohner G, Moskowitz GB, Chaiken S. The interplay of heuristic and systematic processing of social information. Eur Rev Soc Psych 1995;6:33e68. [14] Kesselring A, Kainz M, Kiss A. Traumatic memories of relatives regarding brain death, request for organ donation and interactions with professionals in the ICU. Am Journal Transpl 2007;7:211e7. [15] Zimbardo P. Lucifer effect. Oxford: Blackwell Publishing Ltd, 2007. [16] Oliver M, Ahmed A, Woywodt A. Donating in good faith or getting into trouble Religion and organ donation revisited. World J Transpl 2012;2:69. [17] Haslam N, Loughnan S. Dehumanization and infrahumanization. Ann Rev Psych 2014;65:399e423. [18] Barnard A. On the relationship between technique and dehumanization. Adv Tech Caring Nurs 2001:96e105. [19] Haque OS, Waytz A. Dehumanization in medicine causes, solutions, and functions. Perspect Psych Sci 2012;7:176e86. [20] Vaes J, Muratore M. Defensive dehumanization in the medical practice: A cross-sectional study from a health care worker’s perspective. Br J Soc Psych 2013;52:180e90. [21] West R, Burr G. Why families deny consent to organ donation. Aust Crit Care 2002;15:27e32. [22] Kometsi K, Louw J. Deciding on cadaveric organ donation in black African families. Clin Transpl 1999;13:473e8. [23] Niles P, Mattice B. The timing factor in the consent process. J Transpl Coord 1996;6:84e7. [24] Sanner M. Peoples’ attitudes and reactions to organ donation. Mortality 2006;11:133e50. [25] Conesa C, Ríos A, Ramírez P, Cantéras M, Rodríguez MM, Parrilla P. Redes Temáticas de Investigación Cooperativa: Estrategias para Optimizar los Resultados en Donacíon y Trasplante, Red C03/03. Attitudes toward organ donation in rural areas of Southeastern Spain. Transplant Proc 2006;38:866e8.