Beyond Death: Exploring Cultural Perceptions in Cadaveric Organ Donation

Abstract

Advancements in medicine introduced a relatively invented death into our lives: Brain Death. It intermingles with our perceptions of classical death due to knowing the heart is beating, the color of the skin is pink, and the body’s temperature is warm. Hence, accepting brain death as death might get complicated in terms of relatives of the brain-dead person. The interviews revealed that the reluctance to cadaveric organ donations is highly connected to the cultural perception of death. Furthermore, folklore interferes with altruistic cadaveric donations, particularly folk beliefs, rituals, social norms, and oral traditions.

Introduction

Culture is our guidebook to understanding the world. Coming into the world, every human being becomes a part of the order in which most of things make sense. Growing up in this order, we learn how things are done, which is explained in the sense of “should be” and “must be.” This makes me recall one of the old definitions of culture: Customs, information, skills, domestic and public life, peace and war, religion, science, and art. It manifests through rubbing the stick to make a fire, cremating the deceased, and painting one’s body, and it is transferred through generations (Lowie, 1938). Culture not only shapes our behaviors but also our world views. The enculturation process directs us to particular ways of thinking. This also forms the understanding of health and healthiness. Culture becomes more visible in the process of achieving and defining health, as well as treating illness. Culture provides medically defined expectations regarding the definition of the state of health. People employ them as criteria that make us ignore particular symptoms and embrace particular illnesses as less or more important. Culture also creates a hierarchy of illnesses based on the effects of the symptoms on social life. That is why, for some of us, the ability to work, live without dependence, and breed might be enough to define ourselves as healthy. Culture affects the experience of illness through contextual factors such as age, gender, ethnicity, education, social support organizations (kinship, friendship, groups), legal rights to access health care, and class.

Furthermore, environment, economic standards, and politics also influence the experience of health or illness. The Relationship between culture and fitness is a central concern of phenomenology, which is the individuals’ point of view regarding a given condition that contains sociocultural meaning, reason, and possible cure. According to Kaufman (1988, p. 340), phenomenology explains the transformation of self-identity experienced in the case of illness, trauma, and disability, as well as the meaning of being sick.

Furthermore, sickness is culturally marked with suitable social roles. As Parsons (1971, 1951) suggested, the social system sets socially accepted behaviors for the sick. Even though society does not hold patients responsible for their conditions and free them from normal role expectations, illness is accepted as deviant or dysfunctional behavior. But society does not give up on its’ sick members, giving them space to experience their illness in exchange for the fact that they must seek treatment. However, ethnographic studies showed that patients with untreatable diseases felt responsible for their daily duties toward those around them, even though they were not expected to do so (Fox, 1959). During my fieldwork, I witnessed that female dialyze patients, particularly, were not freed from caring for their children or elderlies and running errands in their houses and outside.

Folklore, on the other hand, consists of local folk knowledge regarding illness, health, and traditional medicine. Folklore is part of any culture that depends more on imitation and moral transmission than formal instruction and written sources. It is processed as if they are untutored beliefs, uncritically held by folk (Clarke & Clarke, 1963, pp. 2–7). Folk medicine is folk knowledge in which folk accumulates and transmits information about the components of health, the meaning and importance of symptoms, and strategies to deal with symptoms. While Rubel and Garro (1992, p. 627), prefer to call it health culture, they conceptualize it with these words: Health culture is information and understanding people learned from their families, friends, and neighbors about the nature of health problems, its cause, and its implications. People use their health culture to interpret their symptoms, give them meaning, assign them severity, organize them into a named syndrome, decide with whom to consult, and for how long they should be treated. Oral tradition forms such as narratives, proverbs, folk beliefs, rituals-avoidance rituals, risk rituals and healing rituals, healing practices, and folk remedies learned from prior folk medicine practitioners shape the relationship between patient and modern medicine. The hierarchy of illnesses can be tracked through proverbs and idioms. “A cat saw its genital and thought it was a wound” [tr. Kedi şeyini görmüş yara sanmış], for example, criticizes people who go to doctors as soon as they experience symptoms. Anatolian Turkish proverbs suggest people keep their bodies and minds busy to protect their health, saying, “Do not listen to yourself too much” [tr. kendini çok dinleme]. Any society has its folk terms with well-defined symptoms for particular diseases. The hierarchy of illness is also visible in local folk terms of illness. Folk terms for illnesses, such as fragile illness (Tr. İnce hastalık/Ing. tuberculous), illness with malignant character (Tr. Kötü hastalık/Ing. cancer), illness of the kings (Tr. Kralların Hastalığı/Ing. gout), and tiller (Tr. Sürgün/diarrhea), indicate not only the seriousness of the illness but also the possibility of the treatment.

Even though culture is dynamic, it cannot keep up with the speed of technological developments. Therefore, getting used to medical advancements takes time, even generations. Furthermore, history has witnessed that sometimes medicine can be wrong. Tobacco, for example, was prescribed by doctors until the late sixties. Smoking was used to treat diseases (Sanchez-Ramos, 2020). Organ failure was not treatable until the fifties. The first successful organ transplant, a kidney from a living donor, was performed in 1975 in Turkiye, and laws regulating organ transplantation were legislated in 1979. The Presidency of Religious Affairs issued an official fatwa promoting living and cadaveric organ donation in 1980. However, neither being able to legislate the required regulations nor enabling organ transplant operations accelerated the speed of adjustment of culture because culture is the most challenging barrier that Western medicine cannot battle but must get along with. This phenomenon can be traced through sociocultural reasons for insufficient cadaveric organ donation rates.

Methods and Data

Turkiye is among the most altruistic countries where people donate their spare kidneys and/or livers to their relatives, friends, and neighbors who suffer from organ failure. While people are willing to donate their spare organs to their loved ones, they do not share a similar attitude regarding donating cadaveric organs. At the beginning of my fieldwork, August 2022, I assumed this attitude must have been related to decision-makers’ concerns regarding resurrection in the afterlife. Knowing the literature supported my assumption, I wanted to test it with qualitative data by conducting fieldwork among patients with kidney or liver failure (n = 34), the living organ donors and receivers (n = 60), organ transplant coordinators (n = 30) and surgeons (n = 21), relatives of brain-dead donors (n = 20), refusers (n = 23) who refused to donate cadaveric organs of their relatives, imams (n = 20) who work at hospitals alongside with coordinators, and Alevi-bektashi dedes (n = 15). Fieldwork was conducted between August 15, 2022, and October 15, 2023.

The work environment consists of 11 training and research hospitals, 9 of which belong to the state, others to the foundations, and all located in Ankara, the capital of Turkiye. In terms of the national organ transplant system, Ankara is one of the most populated regional organ coordination centers [RCC] (tr. Bölge Koordinasyon Merkezi/BKM), and nine RCCs, including Ankara RCC, are subjected to the National Organ and Tissue Transplantation Center (NOTTC) which is also located in Ankara. Ankara RCC coordinates cadaveric organ donations, distribution, harvesting, and transplantation operations in 14 cities. Therefore, I included the state hospitals in these cities in my sampling, interviewing organ transplant coordinators and attending family meetings. While interviews were recorded, observations regarding the interviews and experiences in fieldwork were noted at the end of the day. Recordings were decoded with the help of the Transcriptor, and each audio was listened to make required corrections on the transcripts. Before conducting fieldwork, ethics committee approval was obtained from Bartın University Social and Humanities Research Ethics Board, 2022 SBB-0055, on February 22, 2022.

Working in research and training hospitals day and night and conducting interviews with informants whose lives turn around the concept of organ transplantation and donation, I witnessed refusers always come up with religious concerns regarding the resurrection of organs of the deceased in the afterlife. On the other hand, living organ donors (n = 30) weren’t concerned about the resurrection of their donated spared organs. Since the numbers in living organ donations put Turkiye in the top three countries where altruistic living organ donation happens, religious concerns regarding donated cadaveric organs could only be one of the excuses for why the number of cadaveric organ donations is very low. Furthermore, Islam promotes organ donation, living and cadaveric, referencing the 32^nd Ayat of Surah Al Maida- “…if anyone saved a life, it would be as if he saved the life of the whole people…”-, so religion, in theory, could not have been an excuse for insufficient cadaveric organ donations. Therefore, I attended the family meetings where relatives of the brain dead were invited to be informed about cadaveric organ donation by organ transplant coordinators. I participated in meetings that ended up with donations and refusals.

Data presented in this paper is anchored on qualitative data consisting of face-to-face and online interviews and observation notes taken in hospitals where donations and refusals took place. During the family meetings, I quietly sit, not intervening in conversations between coordinators and the family members of the brain dead to not interrupt the natural process. After the meeting, I passed my condolences to the family members of the deceased and gave my business card to the decision-makers of the families, asking if they could interview me after at least forty days, which is the socio-culturally approved mourning period among Muslim Turks. I contacted all prospective informants after their mourning period was over. I’ve also posted on Facebook, WhatsApp, and Instagram to reach potential informants who were asked to donate cadaveric organs following the brain death of their acquaintances.

20 of those donated cadaveric organs of their brain-dead relatives and 23 of the refusers accepted my invitation. I provided complete confidentiality for all my informants with pseudonyms since my research topic was sensitive, and my ethical responsibilities required me to protect my informants’ social-economic well-being during and after the fieldwork. It provides safety for informants who can freely express their thoughts and feelings about sensitive matters (Allen & Wiles, 2016; Branch, 2021; Guenther, 2009; Lahman et al., 2022; Pfeifer, 1984; Svalastog & Eriksson, 2010). Indeed, providing informants with confidentiality helped me to build sincerity and trust during the interviews. Therefore, they could express their experiences, feelings, and thoughts regarding their time in hospitals where their relatives were declared brain dead. Since regulations require the coordinators to inform the relatives of the brain-dead, all informants participated in these meetings in person. All informants are first-line relatives to the Brain-Dead Donors (BDD), primarily parents, daughters, sons, brothers, and sisters. The most prominent cause of brain death was trauma, accident, drowning in the water, or falling from a height.

Our sample comprises first-degree relatives of brain-dead patients invited to family meetings by organ and tissue transplant coordinators following the declaration of brain death of their relatives. Typically, one or two relatives of the primary informant attended interviews to provide emotional support, but only the primary decision-maker during the family meetings was represented in the sampling. The informants representing donor families predominantly consisted of males (n = 16), including fathers (n = 2), grandfathers (n = 1), husbands (n = 3), younger brothers (n = 3), older brothers (n = 4), or sons (n = 3) of the donor. A minority of female informants (n = 4) held decision-making positions, such as wives (n = 1), older sisters (n = 2), or daughters of the donor (n = 1). Their ages ranged from 25 to 67. Educationally, most had completed high school (n = 8), with seven attending college. Additionally, some finished elementary or middle school (n = 3), one held a doctorate, and another had a master’s degree. Marital status varied, with the majority being married (n = 9) or single (n = 4), while three were divorced and four were widowed. The majority were parents (n = 14). Living environments were predominantly urban (n = 17), with a minority residing in rural areas. Employment-wise most were employed full-time (n = 12), while a few owned businesses (n = 5), and a minority were retired (n = 2). Only a small number relied on state-provided widow or orphan pensions (n = 3).

The second part of the sampling comprises refusers (n = 23) who attended family meetings but declined to donate the organs of their brain-dead relatives. The age of refusers ranged from 19 to 72. The majority were female, including wives (n = 5), sisters (n = 2), daughters (n = 3), and mothers (n = 4) of the deceased. The remaining informants were male, including fathers (n = 4), husbands (n = 3), brothers (n = 1), and grandfathers (n = 1) of the brain-dead. Most refusers completed elementary school (n = 9), with fewer completing middle school (n = 3) or attending high school (n = 7). Two had a college degree, and the rest graduated from a vocational school. Marital status varied, with most being married (n = 9) or widowed (n = 7), while four were single, and the rest were divorced. The majority were parents (n = 15). Living environments were predominantly urban (n = 19), with a minority residing in rural areas. Regarding employment, most were business owners (n = 11), while some were full-time employees (n = 6), and a few were retired (n = 4). A minority relied on state-provided widow or orphan pensions (n = 2).

The Test of Culture with Cadaveric Organ Donation

The most cited reasons for refusals in cadaveric organ donation are religious concerns, particularly the resurrection of organs in the afterlife (Pessoa, Schirmer, and De Aguiar Roza, 2013; Elsafi et al., 2017; Vuković et al., 2010; Bruzzone, 2008; Le Nobin et al., 2014; Ghorbani et al., 2011; Janssen et al., 2017); waiting for a miracle denying brain-death (Ghorbani et al., 2011); previously unknown wishes of the deceased (Andres et al., 2009; DeJong et al., 1998; Sanner, 2006); the lack of external signs of death (Andrés et al., 2009; Long et al., 2008); fear about the destination of organs (Ghorbani et al., 2011); institutional mistrust believing hospitals profit-oriented, and doctors declare brain-dead to get the cadaveric organs (Arnason, 1991; Hall et al., 1991; Lange, 1992; Reitz & Callender, 1993; Siminoff, 1999; Siminoff & Chillag, 1999). Studies conducted in Turkiye revealed that the significant reason for refusals is religious concerns, which can be divided into subcategories. Most refusers believe that donating cadaveric organs is interpreted as a rebellion against God’s will. Some feared that cadaveric organ donation could hinder the complete resurrection of the deceased in the afterlife (Akgün et al., 2002; Akış et al., 2009; Bölükbaşı, 2004; Çevik et al., 2019; Özdağ, 2001; Özkan & Yılmaz, 2009; Tepehan & Elmas, 2014; Yücetin et al., 2013).

When coordinators asked the families of BD if they wanted to donate the cadaveric organs of BD during family meetings, most of the families refused, giving religious concerns as an excuse. Indeed, I witnessed coordinators informing prospective donor families about the religious aspects of cadaveric organ donation; in some cases, they invited imams and dedes to meetings. Therefore, the families of the deceased could make a fully informed decision knowing the religious aspects of donation. However, the members of some families (n = 18) called the clergy they trusted with their means to learn about the religious aspects of organ donation due to double-checking the reliability of the information provided by hospitals. It helped some decision-makers (n = 8) who were reluctant to donate the organs of their loved ones at the beginning of the family meeting. Few families (n = 3) were content with the religious information provided by hospitals and went for donations. The most helpful factor was knowing the deceased’s wishes regarding organ donation (n = 8). The relatives of those who had donation cards, who talked positively about organ donation, or bequeathed their organs to be donated while they were alive could give their consent without hesitation. Only one family didn’t donate, although their son had a donation card. In this case, the family said their son was too young at the moment of his decision. Refusers (n = 13) first came up with the excuse of religious concerns at family meetings where I was an observer. Even though coordinators provided refusers with religious information given by themselves, imams, or let refusers consult with their clergyman to whom refusers had complete trust, they didn’t donate the cadaveric organs of the deceased.

Conducting in-depth interviews with refusers, I saw religious concerns of some (n = 17) were far from the subcategories mentioned above. Some of these informants (n = 8) and the rest (n = 5) refused to believe that someone with a beating heart could be counted as dead. Since they didn’t bring these during the meetings, religious concerns were officially reported as the reason for rejection, which shows the importance of qualitative interviews. During the family meetings, I witnessed that many families struggled to understand the concept of brain death and how a person with a beating heart could be declared dead. Similarly, none of the refusers stated that they waited for a miracle until the organs of their loved ones failed. My interviews also revealed that refusers who believed the organ trade narratives reflected the real-life experiences of organ trade victims feared that the cadaveric organs of the deceased would go to rich people, which reflects the mistrust of the organ allocation system (Karataş, 2023). Institutional mistrust regarding misuse of cadaveric organs mentioned in studies (Arslantas & Çevik, 2021; Ghorbani et al., 2011; Keçecioglu et al., 1999; Lange, 1992; Mojtabaee et al., 2017; Özkan & Yılmaz, 2009; Tepehan & Elmas, 2014; Ugur, 2018; Yazar & Açıkgöz, 2016). However, a few unfolded the sources of the fear about organ trade and unknown organ destination (Campion-Vincent, 1997, 2002b, 2015; Çelik, 2005; Karataş, 2023; Lundin, 2015; Scheper-Hughes, 1996; Shimazono, 2007; Zwart, 2016).

Denying or rejecting brain death as a form of death, waiting for a miracle even after the declaration of brain death, and mistrust of allocation of cadaveric organs stems from the culture and folklore. Since Islam promotes cadaveric organ donation referencing the 32nd Ayat of Surah al Maida, religious concerns of refusers primarily were nurtured by folk Islam. Most of the refusers (12 in 23) stated that they waited for the cardiopulmonary death of the Brain Dead since they believed that the soul settles in the heart. Those of waited for cardiopulmonary death stated that they grew up listening to the narratives suggesting the soul enters the body in the womb and leaves the heart at the moment of death. Some of them (n = 8) supported their views with proof: body temperature of the body: “While the soul leaves a person, the body gets cool from top to toe. My mother’s feet were warm when doctors told me she was dead”, “I witnessed many people passing away. I saw many dying people. First, their head gets cooled, and last, their feet. We-implying her generation-wrap feet with hot towels. So the soul can leave the body. Until then soul stays in the body. You can feel how close someone is to death by touching their feet. None of it happened when my sister was announced dead”, “I saw my aunt dying. The color of her body faded. But the most visible sign of death coming was the coldness of her body. She was begging us to wrap her with blankets. My mother put a bottle filled with hot water under her feet. She delivered her soul after for a while”.

Waiting for cardiopulmonary death, few refusers (n = 2) referenced the sound of artificial life unit as proof of the invalidity of brain death announcement. Omer, the father of the brain-dead, couldn’t donate the organs of his 6-year-old son since the color and temperature of his son’s skin were encouraging and, most importantly, indicators of life unit were hopeful. Even though the intense care doctor informed him his son was brain dead, he couldn’t lose hope: “My son had an accident. He was admitted into intense care when we got to the hospital. After seven days, his doctor told me he was dead. But he seemed ok when I saw him in his room. He was like sleeping. My wife and I couldn’t give up on him until we saw the straight line on the screen and heard the monotone of the machine”. The rest (n = 2) presented the beating heart as proof asking me how a person with a beating heart could be dead: “…My brother’s chest was moving, he seemed as if he was sleeping. I couldn’t let him go because his heart was beating. I even listened to the sound of his heart, putting my ears on his chest…”, “My father fell from the scaffold, they told me his lungs exploded at the moment of falling. I knew his lung depended on the machine which was beeping”. Beating heart has negative influence on the prospective donor families, because it is alone representing the sign of vitality. Scholars noted that donor families questioned how a person with beating heart could be dead. Since brain dead person does not show all of the external signs of death, prospective donor families assume their relatives may recover (Andrés et al., 2009, p. 2305; Long et al., 2008, p. 118; Özkan & Yılmaz, 2009, p. 23). Furthermore, the sound and indicators of artificial life unit nurturing and ventilating cadaveric organs cause confusion in the families of the braindead because they suppose the brain-dead person might be in a coma or vegetative state. Visible signs of vitality, such as the color and temperature of BD’s skin and the hopeful sounds of the artificial life unit, trigger a tendency to believe in miracle narratives that miraculous healing is possible (Karataş, 2023).

Doctors announce the case of brain death by running advanced tests. Then They inform the relatives of the brain dead, presenting the data. I witnessed many times the families wanted doctors to run these tests repeatedly. In some cases (n = 5), members of families looked for a second or third impartial opinion of their physician or nurse acquaintances. Asking for a second opinion to double-check the validity of brain death and mistrust of the organ allocation system mainly stem from the urban narratives and movies that plot the misuse of cadaveric organs. Oral tradition provides urban narratives in which corrupted health practitioners declare brain death to get the organs of patients, trauma patients with a donor card are ignored or left for dead, and members of organ trade gangs kidnap healthy people to sell their organs (Karataş, 2023). Films plotting the organ trade also hurt the decisions of refusers. Several refusers (n = 5) rationalized the plots of these urban narratives, referring to several movies. The most mentioned movies to prove the realizability of urban narratives were Anesthesia, Fractured, Seven Pounds, The Turkish film Hunter (Tr. Avcı), and the TV show Behsat Ç.

Even though studies noted that institutional mistrust hinders cadaveric organ donations, only a few investigated the source of these concerns relating to folklore (Campion-Vincent, 2002a; Karataş, 2023; Scheper-Hughes, 1996; Zwart, 2016). While relatives of the deceased already had difficulty understanding the concept of brain death, these urban narratives put another burden on their shoulders, questioning the ethical standing of health workers. I witnessed a few times relatives of the brain dead accusing intense care doctors of neglecting the patients and insulting organ donation coordinators by calling them vultures. Studies show that whether families consent to cadaveric organ donation on behalf of the BBD is the most challenging decision families must make during hospitalization (Manuel et al., 2010; West & Burr, 2002). Most families hear the concept of brain death for the first time, experiencing the loss of their loved ones. Indeed, donor and nondonor families interviewed dealt with the shock of bad news during family meetings. Only several (5 in 43) were familiar with the concept but didn’t experience it in the family circle. The rest encountered the concept of brain death for the first time and directly experienced it with the loss of their loved ones. Even though some refusers (n = 9) stated that their relatives were irreversible dead, they didn’t donate the cadaveric organs of the deceased because they wanted to choose the recipients. Both donor and non-donor families expressed that recipients’ possible misuse of organs concerned them. They worried that a recipient could be a drug addict, alcohol consumer, child abuser, etc. Few (n = 6) mentioned that the wrongdoings of the recipient could devastate the deceased’s afterlife as well. Islam clearly states that a person is responsible for his deed. The transfer of sins and personality through organ transplantation must be related to the idea of the transfer of evil. Anthropological data presents examples of the transfer of evil from human to human, human to animal, and human to things (Campbell, 2012, pp. 37–40; Evren, 1952, p. 477; Frazer, 1913, pp. 1–59; Koşay, 1939, p. 67; Karataş, 2023; Örnek, 1966, pp. 64–68; Petekçi, 1962, p. 2743; Van Gennep, 1969, pp. 57–58). Folk seems to adjust this understanding to the concept of organ transplantation. This very view represented itself in a family meeting as well. A mother of a drug dealer refused to donate his brain-dead son’s organs, claiming his son was sinful and his organs would spoil the personality of another mother’s child. Fatma thought, “May Allah forgive him, but he was horrible. I couldn’t line him up. So, a water pot was broken on the water road [Tr. Su testisi su yolunda kırılır]. I am not against the donation. But donating his organs would ruin the personality of the recipients. You may laugh at me, but this is how I feel. His bad habits, the evil of his heart can not wrong anyone now”. Preferences of prospective recipients are not limited to lifestyle. Most informants, including donors, asked coordinators if doctors use cadaveric organs for young patients with organ failure. Families of prospective donors wanted to know that the organs of the deceased could save young patients whose families suffered. Donor families (n = 12) informed about the age and gender of the recipient by coordinators after transplantation noted that the recipient’s age helped them during their mourning period knowing the organs of his beloved ones saved the lives of the young patients. Several donor families (n = 3) also expressed that they are content with their decisions since the organs of their beloved ones will live longer in the bodies of the young. Nurhayat, the daughter of BDD, expressed her feeling as follows: “Of course I preferred the young one. It may seem cruel. But the young have life, things to see, and work to do. I am old, too. If I were sick, I wouldn’t waste anyone’s organs for myself too. Let’s say my organs went to eighty years old guy. How many years will he benefit from my organs?” Several families of BDD (n = 9) stated they wanted to donate cadaveric organs to young patients since the young are more likely to build successful careers and do work for society than older recipients. Those of preferred the young patients as prospective recipients provided with me the hadith as well. According to Islamic understanding of death, the deed book of the deceased stays open on the condition that the deceased raised well-behaved children, spent his life building wisdom that society can use, or long lasted, public serving charity (Tr. Sadaka-i cariye). In this case, these donor families contented with the donation believing the deed book of the deceased will stay open since cadaveric organs give a chance to someone to achieve to do good things for the society.

Conclusion

Cadaveric organ donation is the last hope for many patients. Insufficient cadaveric organ donations have put patients with organ failure into the grave before their time. 2414 kidney and 178 liver failure patients died waiting for cadaveric donors (Domínguez-Gil, 2021). Furthermore, current cadaveric organ donations in Turkiye mirror that most donor families are unwilling to donate organs that living donors cannot supply. Therefore, socio-cultural barriers to cadaveric organ donation are life-threatening for heart, lung, small intestine, and pancreas failure patients. Medical information about the concept of brain death, procedures of organ transplantation, and cadaveric organ donation supplied by health practitioners had little influence on the decision (Merchant et al., 2008, p. 344). Studies conducted in Turkiye revealed that the educational level of the members of the prospective donors has little potency on cadaveric organ donations (Akış et al., 2009; Bölükbaşı et al., 2004; Erdoğan et al., 2002; Keçecioglu et al., 1999; Akgün et al., 2002; Akgün et al., 2003; Uğur 2018). Surveys noted that even some health practitioners, doctors, nurses, and medicine students haven’t donated organs and are confused with the concept of brain death (Akış et al., 2009; Erdoğan et al., 2002; Tepehan & Elmas, 2014; Topbaş et al., 2005).

Socio-cultural reasons for unwillingness to cadaveric organ donation are mostly related to religious concerns in prior studies. Since most of them were quantitative, the extent of religious concerns was limited to the two subcategories: Donation may hinder the resurrection of the organs in the afterlife of the deceased, and it may be interpreted as a rebellion against the wish of Allah over the body he created. Indeed, most of the refusers rejected to donate the organs of the deceased, referring to the resurrection of the body as an excuse.

Face-to-face interviews with refusers revealed that the most challenging cultural barrier is the classical understanding of death. Since both Islamic and folk philosophies of death were formed around the beating heart, most of the refusers waited for cardiopulmonary death of BBD. This understanding is also nurtured by the miracle narratives since some families waited for a healing or resurrection miracle until the cadaveric organs failed. Another sociocultural reason was institutional mistrust nurtured by urban narratives. In this case, refusers referenced narratives in which the organs of the poor were drugged, and young children were kidnapped for their organs (Karataş, 2023). Films plotting the organ trade also hurt the decisions of refusers. Several refusers (n = 5) rationalized the plots of these urban narratives, referring to some movies. The most mentioned movies to prove the realizability of urban narratives were Anesthesia, Fractured, Seven Pounds, The Turkish film Hunter (Tr. Avcı), and the TV show Behsat Ç.

Even though the studies conducted in Turkiye noted that fear of misuse of cadaveric organs by organ recipients hurts the decisions of prospective families, quantitative data presented didn’t unfold the extent of this fear. On the other hand, qualitative data showed that prospective donor families wanted to ensure the recipient would appreciate it by taking good care of the cadaveric organs. Prospective donor families (n = 11) were particularly concerned about the lifestyle of prospective organ recipients, especially if the BDD was religious or young. The scope of this concern also reveals that folk believe, as an updated version of the transfer of evil, the sins of the cadaveric organ recipient committed after transplantation may affect the comfort of the deceased in the afterlife. This belief also represents itself through the concern of personality transfer between donors and recipients.