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ARTICLE
Evaluation of Reasons for Not Giving Donor Consent by Families of Patients With Brain Death: A Retrospective, Mixed-Method Study

Abstract
Objectives: The number of patients with organ failure is increasing day by day; today, the numbers of organs and tissues for transplant remain inadequate. This study, which was carried out in a hospital of Sivas Cumhuriyet University in Turkey, aimed to determine reasons for not giving consent for organ donation after brain death and to clarify the familial causes listed among these reasons.
Materials and Methods: This study was a retrospective, mixed-method study. Records of patients diagnosed with brain death and patient relatives who stated that they did not donate organs and who agreed to participate were included in the study.
Results: Of 48 patients diagnosed with brain death, 39 (81.3%) did not donate organs. Reasons for not donating could be grouped under 5 themes: distrust (communication defects, frustration, anger, not meeting expectations), thoughts that the procedure would not provide benefits, fear (not accepting death, not understanding brain death, and experiencing loss), unwillingness to impair body integrity, and phobia of social reactions.
Conclusions: We found that some patient relatives who were not against and even supported organ donation decided not to donate organs at the last minute. Reasons for not giving donation consent included distrust, anger, and frustration resulting from communication problems with health professionals, making the candidate donor feel valueless, previous bad experiences and prejudgments about the institution, and not providing the appropriate physical conditions related to the comfort of the patient relative during the process. It is important to keep in mind that the organ donation process begins with the patient’s admission to the hospital; if managed correctly, the process can affect the decision of relatives in a positive way. Identifying and preventing potential obstacles that could affect decisions may increase donation rates. Health professionals with special training on this subject are needed for these situations.


Key words : Intensive care, Mixed-method study, Organ donation, Organ transplantation, Patient relatives

Introduction

The number of patients with organ failure has been increasing every day, and the most effective treatment remains organ transplantation.1 Organ transplant involves replacement of a nonfunctioning organ with an organ from a living or deceased donor, including those with brain death.2 Organ donation is the voluntary donation of an organ or tissue while living or allowing the use of tissues or organs for someone else after medically documented end of life. In addition, organs or tissues from those who have not made a statement regarding organ donation while alive can be donated by relatives after medically determined end of life. This is called deceased organ donation.3 The preferred situation is to obtain organs from donors after brain death.4 The most significant problem in transplant is the insufficient availability of organ and tissue donations.5

In Europe, 80% of organs are from deceased donors and 20% are from living donors; in contrast, 75% of organs in Turkey are from living donors and only 25% are from deceased donors.2 According to 2019 data from the International Registry in Organ Donation and Transplantation, Turkey ranks first in the world in living organ donations.6 Dogan and colleagues associated the high number of living donors in Turkey with strong family ties.7 Although the 2019 data showed that the number of organ donations has been increasing in all countries,6 desired donation rates have not yet been achieved. Negative thoughts and judgments from society about organ donation may make it difficult to solve the problem of insufficient numbers of organ donations.Organs may not be donated for different reasons. Reasons that affect decisions to donate organs include religious factors (doing a favor, showing compassion, helping someone to survive, the desire to be useful to others) and socioeconomic factors (family expectation, reward, money expectation).8 Decisions to donate organs may also be related to family reasons, personality traits, attitudes, intentions, and altruism.9-11 Among the reasons for society to have problems with organ donation are those related to religious beliefs, the unwillingness for body integrity to be impaired, insufficient information about tissue and organ transplant, and insensitivity to organ donation. Other reasons are thoughts that the organ will be given to unwanted people, that doctors will make the decision of death early to take an organ, and that the donated organs will be used improperly.12,13 One factor that affects decisions on organ donation is the feeling of compassion, with individuals perceiving those in need as defenseless or distressed, motivating them to support those in need.14 Awareness of organ donation in society should be raised, and participation should be supported to solve the problem of donation.15

Studies that have revealed factors affecting organ donation positively and negatively can guide programs or campaigns to increase organ donation. To increase participation in organ donation, social and psychological approaches developed on the basis of attitude change and attitude-behavior consistency have been usually used.16 However, the number of studies on this subject remains low in Turkey, where organ donation rates are also low. Determination of factors affecting organ donation is important for development of intervention protocols.17

This study was carried out in a hospital of Sivas Cumhuriyet University in Turkey to determine reasons for not giving consent for organ donation in cases of brain death and to clarify the familial causes listed among these reasons. We aimed to understand the perspective of society on organ donation and to define in detail the factors that affect organ donation both positively and negatively, especially those difficult to understand, which could be used to guide protocols on increasing organ donation rates.

Materials and Methods

The Standards for Reporting Qualitative Research guide was used in the study. This retrospective, mixed-method study was conducted in December 2020 using data from our university hospital. Its purpose was to reveal more clearly the reasons (especially familial reasons) for not donating organs by relatives of patients who were diagnosed with brain death by our Organ Transplantation Committee.

Ethical statement
Permission was obtained prior to start of the study from the noninterventional clinical research
ethics committee of the faculty of medicine (August 12, 2020, decision number 2020-08/19) and the institution where the study would be conducted. This study followed institutional ethical guidelines. Verbal informed consent was obtained from relatives of patients before the interview.

Inclusion and exclusion criteria
Records of patients diagnosed with brain death and patient relatives who stated that they did not donate organs due to family reasons in these records and who agreed to participate were included in the study. Relatives of patients with brain death who were excluded were those who could not be reached
by phone and those without an organ donation interview. Excluded patients were those with records showing death after stopped circulation.

Study sample
Our quantitative data included the number of patients diagnosed with brain death, as shown in medical records, by our Organ Transplantation Committee between 2017 and 2020. Our qualitative data consisted of patient relatives who stated that they did not consent to organ donation for familial reasons, who agreed to participate in the study, and who were selected using the purposeful sampling method.

During the 2017 to 2020 study period, 52 patients were diagnosed with brain death. Four patients with brain death who also had stopped circulation and no family interviews on donation were excluded from the study; therefore, there were a total of 48 patient records. Of these 48 patients, 9 patients were donors, leaving 39 patients who did not donate organs. Among the 39 patient records, there were 26 patients who did not donate organs due to family reasons. Twelve of these patient relatives could not be reached by phone and interviewed and therefore were excluded from the study. We conducted interviews with 14 patient relatives; however, 7 of the patient relatives who were interviewed by phone were not included in the study because of refusal to participate. The remaining 7 patient relatives formed the sampling of the qualitative part of the study (Figure 1).

Application of the study and data collection process
Records from the Ministry of Health Transplantation, Dialysis and Monitoring Systems, prepared by the Hospital Organ Transplantation coordinator, were used in the study. Age and sex of patients diagnosed with brain death, the clinic where they were diagnosed and where they were hospitalized in the intensive care unit, the donation status, and reasons for not donating were examined. Relatives of patients who were determined to have not given donor consent and who stated “family reasons” without clear meaning, such as religion or will, according to records were contacted by phone. For those patient relatives contacted by phone, verbal consent was obtained after the purpose of the study was explained. Phone communication was used because of the COVID-19 pandemic. Informed consent stated that participants’ confidentiality would be protected and participation was voluntary. It also stated that the participants had the right not to answer questions if they wished. In-depth focus interviews were conducted with participants who agreed to participate to clarify reasons for not donating organs. Interviews were recording for those patient relatives who accepted audio recording. Data collection forms were used to record answers of patient relatives who did not accept audio recording.

Statistical analyses
The quantitative data obtained from the study were uploaded to the SPSS version 22 (Statistical Package for Social Sciences) package program for statistical analysis. Percentage and frequency distributions were used for presentation of quantitative data. Patient statements were analyzed by the content analysis method. Common themes were determined by agreeing on the themes that the researchers identified independently of each other.

Evaluations of qualitative data obtained from the study were performed in 2 stages, with evaluation of written transcriptions of interviews and content analyses. Qualitative data, which included voice recordings of the 7 patient relatives and their written statements recorded on data collection forms, were transferred to an electronic format on computers, with obtained data then read by researchers independently and repeatedly. Emotions, thoughts, and different situations underlying reasons for not donating organs were attempted to be determined by analyzing the content of the patient relatives’ statements. Thus, important statements related to the purpose of the study were collected from the interviews, and these statements were assigned as codes. Coded statements were then compared in terms of similarities and differences. Codes with common features were grouped to form main and subthemes. Themes and subthemes were constantly revised for clarity and suitability.

Results

With regard to number of patients with brain death during the study period (n = 48), there were 3 patients diagnosed with brain death in 2017, 6 patients in 2018, 23 patients in 2019, and 16 patients in 2020 (Figure 2). Of the 48 patients diagnosed with brain death, 18 were female, 30 were male, 7 were under 18 years of age, and 41 were adults. Among the 48 patients, 11 were diagnosed in the anesthesia intensive care unit, 6 in the neurology intensive care unit, 25 in the neurosurgery intensive care unit, 5 in the pediatric intensive care unit, and 1 in the internal medicine intensive care unit (Table 1).

Nine of the 48 patients (18.7%) became donors, whereas 39 patients (81.3%) did not donate organs. Among the patients who did not donate, 4 did not donate organs due to religious reasons, 5 due to concerns that body integrity would be impaired, and 4 did not donate due to will. The remaining 26 patients had relatives who did not want to donate for family reasons (Table 2). Statements of the 7 patient relatives who did not donate organs due to family reasons and agreed to interviews and the content analysis of these statements are presented below.

When the statement “we did not donate organs for family reasons” of the 7 patient relatives was analyzed, we found that the reasons for not donating could be grouped into 5 themes: (1) distrust (communication defects, frustration, anger, not meeting expectations), (2) the thought that the procedure would not provide benefits, (3) fear (not accepting death, not unders-tanding brain death and experiencing loss), (4) unwillingness to impair body integrity, and (5) phobia of social reactions.

Relative 7
My patient is a cancer patient; his organs are already sick. They will not be useful to others. They said his liver was normal, but I didn’t believe it. He is the person who I have lived with for 30 years. He’s already been in pain for 15 years, and I didn’t want him to suffer anymore.”

We concluded that the main reasons for not donating were distrust in the physician and the thought that the procedure would not provide a benefit. We suggest that the patient relative tried to explain 2 different situations with the statement, “He’s already been in pain for 15 years, and I didn’t want him to suffer anymore.” An underlying reason may be religious beliefs, considering that the relative did not agree to donation due to the belief that life continues after death, according to the religion of Islam, and suffering is a characteristic of living beings. With the statement “I didn’t want him to suffer,” the relative may not accept that the patient was dead.

Relative 9
“When we brought my mother to the emergency service by ambulance, I thought that there might be a mistake when I heard the words, “this is not the patient we expected” from the people meeting her. While taking my mother to intensive care, no information was given about my patient. They said cerebral hemorrhage occurred; they tried to stop it. They said, the professor would examine her at 9 o’clock in the morning. I slept on benches until the morning. I wanted to contact the intensive care unit but could not do it. At 9 o’clock in the morning, I went to the intensive care unit because the doctor would come, but the doctor did not come. I had undergone surgery in that hospital before. My wound got infected. Then I had undergone a similar surgery in a private hospital. Thank goodness, I recovered. I did not forgive in anger because I could not trust that hospital, and there was a contradiction between what they said and what they did. However, a very close relative of mine is also a patient waiting for an organ. Even that didn’t come to mind. I am not a person against organ donation.”

In this patient relative, the reason for not donating organs was feelings of distrust and anger caused by previous bad experiences with the institution. Not donating organs because of feelings of distrust and anger, despite not being against organ donation, suggested that the patient relative was informed on their relative having brain death and had request for organ donation performed simultaneously.

Relative 10
“I disagreed with my siblings. I have five siblings. They didn’t want it. Actually, I was looking kindly on it. I could not make that decision alone. I didn’t want to take responsibility. My siblings did not want to donate organs because they didn’t want our father to be cut. He was already old; my father’s organs were not healthy.”

For this patient relative, we concluded that the donation was not made because of unwillingness to take responsibility, the unwillingness for body integrity to be impaired, and the thought that it would not provide benefit. We suggest that the statement “he was already old; my father’s organs were not healthy” indicated that the relative did not believe that the procedure would provide benefit or that the relative had sought some rational reason for organ donation. Rationalization may be caused by an inner uneasiness brought about by the thought that the decision made was wrong.

Relative 11
“I didn’t want my husband’s body to be emptied. Would I bring him with an empty body from there? It was not possible for me to do this to him. So, I didn’t donate.”

We categorized the reason for not donating organs as unwillingness to impair the body integrity. Along with the sense of responsibility for the husband was an instinct of protection to prevent more damage (“Would I bring him with an empty body from there?”).

Relative 13
“I couldn't believe my husband was dead. Doctors explained it a lot, but I couldn’t accept it. I always hoped that he would recover.”

The statement “Doctors explained it a lot, but I couldn't accept it” may be based on the hope for recovery and the fact that there was no visual change in the patient before and after the diagnosis of brain death, as the heart continues to beat, which may have supported this hope. The news “brain death has occurred” and the request for organ donation were probably given simultaneously, allowing the relative no time to come to terms with the situation.

Relative 15
“My dear brother died. I am mourning. Two doctors called me and said that they would cut my brother, take the useful organs, leave the useless ones, and then staple him back. Those doctors killed my brother. They conducted a test on my brother. I heard it with my own ears. They were asking each other on the phone, ‘Shall we use this or that medicine while taking him to x-ray?’ I got very angry. I reacted by saying, ‘Is my brother a guinea pig?’ That medicine killed my brother. Organ donation is a good thing; it saves lots of lives. But I didn’t donate because I didn’t trust those doctors. I will never go to that hospital or take my relatives there again.”

The patient relative clearly did not trust the doctors. From the statement, “Two doctors called me and said that they would cut my brother, take the useful organs, leave the useless ones, and then staple him back,” we concluded that the patient relative was disturbed by the communication of the doctors; such an expression was devoid of feelings and banalized the case, and the relative was angry and felt that his brother was valueless to the doctors.

Relative 25
“When we were asked to donate our child’s organs, I discussed it with my husband, and we decided on donating our child’s organs so that others could stay alive. Since we didn’t want our donation to be heard, we wanted it not to be heard in the press. We gave up on it after we were responded as “no leakage into the press is not guaranteed.” We didn’t want our decision to be heard so that the donor and the donee couldn’t know each other, also because the family elders might put pressure due to our decision, which was made without talking to them. If the donor and the donee had known each other, psychological problems might have arisen in the future. Therefore, we didn’t want leakage into the press.”

We concluded that the relatives were not against donation, but they could not donate or changed their minds because of social pressure and other factors. From the statement, “so that the donor and the donee couldn’t know each other,” the relatives may not have wanted the donation to be made public to prevent any social pressure and psychological problems in the future or they may have wanted to keep the donation hidden in line with the cultural aspects, by considering organ donation a charity work.

Review of patient relative statements
After interviewing 7 patient relatives who did not donate organs due to family reasons, we found that 2 relatives did not donate organs because of different opinions from their siblings, could not come to an agreement with them, and did not want to take responsibility (Relatives 10 and 11), 3 relatives did not donate organs due to distrust of the institution, health professionals, or doctors (Relatives 7, 9, and 15), 1 relative did not donate organs because she could not accept the death and hoped for recovery (Relative 13), and 1 relative did not donate organs because of fear of leakage into the press and did not want their social environment to hear about it (Relative 25).

Discussion

In our study, in which we investigated the number of brain deaths and the reasons for not donating organs between 2017 and 2020 in a university hospital, we observed that the number of brain death diagnoses and the rates of organ donation were lower than expected. Among reasons not to donate, even in relatives not against donation, distrust in the institution or health professionals ranked first, with requests for organ donation made under inappropriate circumstances, at the wrong time, and without proper or perceived negative communication.

At our institution during the study period, the lowest number of brain death diagnoses and the lowest number of organs donated occurred in 2017, with the most brain death diagnoses and organs donated occurring in 2019. The increase in brain death diagnoses in 2019 was significant. This can be explained by the fact that the organ transplant coordinator was newly established in 2017, the professionals of the institution were not experienced in diagnosing brain death and were new in their duties, and they did not have a command of the diagnostic criteria and the diagnosis of brain death. In the study from Uzuntarla18 that examined rates of brain death diagnoses and organ donations in a training and application hospital, decreased rates of brain death diagnosis were attributed to a reduced knowledge of the subject, resulting from the annual change in the intensive care team and the brain death team.

Among the places that established the brain death diagnoses in our study, the neurosurgery intensive care unit ranked first and the anesthesia intensive care unit ranked second. We suggest that the number of beds in units and the health professionals’ knowledge and sensitivity of the subject have an effect on establishing the diagnosis of brain death. Head trauma and the other pathologies of the head constituted most of the diagnoses for patients admitted to the neurosurgery intensive care unit; therefore, the high rates in this unit are expected.

A significant obstacle in organ transplant is rejection by the family to give consent.19 In our study, we found that the most common reason to reject consent was distrust of health professionals or the institution. In a study from Özkan and Yilmaz20 that investigated reasons for not donating organs, 20.4% of the participants did not donate organs because of distrust in doctors. In a study from Alat and colleagues, 29% rejected organ donation because of religious reasons.21 The study from Uzuntarla18 also found religious reasons to be a primary reason for not donating organs, in 39.4%, which was followed by unwillingness to impair the body integrity in 23.6%. According to the study from Uzuntarla, distrust was a less common reason for not donating organs (in 15%).18

The results from these studies do not generally match with our results. This may have been because of sample differences among the studies. However, solutions related to the reasons for not donating organs are important to increase donation rates. Because we found distrust to be a primary reason for not donating, it is crucial to determine the elements that constitute distrust. In our study, elements leading to distrust included past experiences, communication problems, feeling valueless, and not being able to obtain adequate and reliable information. Health professionals should pay attention to their com­munication with each other in areas where patient relatives might hear them and the methods that they use to communicate. Care should be taken in tone of voice and communication style with both health professionals and patient relatives. Careful com­munication is needed that can be understood fully by patient relatives, with care to avoid misunderstanding by patient relatives. To increase organ donation, Escudero and colleagues22 and Witjes and colleagues23 suggested that health professionals working in this field should have advanced knowledge of patient management and should guide patient’s relatives by receiving special training on communication techniques.

As a result of their systematic examination, Simpkin and colleagues24 suggested that there are modifiable factors associated with informed consent for donation. These modifiable factors associated with consent for donation are noncomprehension of brain death, inappropriate timing of the request, and the poor approach of the person who made the request.24 In our study, we observed that some patient relatives who were not against and even supported organ donation in their statements ultimately did not agree to organ donation. Reasons to not donate started from the process of bringing the patient to the hospital by the patient relative and continued to when they received the news of the patient’s brain death and were asked to donate the patient’s organs, which were unrelated to reasons such as disagreement within families. These problems that may occur during the process should be determined and eliminated beforehand. We suggest that the process should be managed in line with the expectations of patient relatives. In these cases, patient relatives may not consent to organ donations because they have feelings of anger, frustration, distrust, and valuelessness, perhaps as a result of insufficient information provided to them during this process. Patient relatives may feel indifference from health professionals to their fears and concerns and may feel no institutional support with regard to their physiological needs by their needs being ignored during the waiting period.

In their study, Matesanz and colleagues25 described planned actions and the effects of these actions on donation and transplant activities to increase organ donation in Spain. Problems that occurred during the process of brain death diagnosis were defined, new strategies to eliminate them were determined, and positive outcomes were achieved.25 We suggest that both the organ transplant coordinator and other health professionals must develop careful communication to better manage this process. We also suggest that, when news of death and the request for donation are simultaneously given to patient relatives, organ donation requests are denied. A reasonable time is needed after announcement of brain death for the patient relatives to come to terms with their pain. Only after this should there be a consultation for organ donation. These considerations could allow negative decision-making with feelings such as anger and frustration to be reduced. In their study, Ralph and colleagues19 evaluated the perspective of donor families on donation and the difficulty experienced by family members in making a decision full of emotion and under time pressures while trying to understand the meaning of brain death and how coping with unexpected death and mourning play a role. Indeed, good communication skills from the coordinator who presents news of death and options to donate to patient relatives play a significant role in the donation process. A statement such as the following from a health professional would not likely result in organ donation: “We will cut your brother, take the useful organs, leave the useless ones, and then staple him back.” We recommend that discussions with patient relatives on donations should be respectful, with attention to the way the communication is initiated, expressions, tone of voice, and empathy toward the feelings of patient relatives. If possible, only those who have received special training on this subject should contact patient relatives.

Limitations
Because some time had passed since death of patients, changes in feelings and thoughts may have occurred in the relatives. In addition, because interviews were made by phone, facial expressions and body language of the participants could not be followed by the researchers.

Conclusions

Similar to rights of the body when alive, patients again own the rights to agree or disagree to any procedures on the body after death. Personal records on whether a person gives consent to organ transplant should be included in the health record systems to eliminate difficulties in decisions among family members; in Turkey, family ties are strong and thus play a role. We observed that some patient relatives who were not against and even supported organ donation ultimately decided not to donate organs. The reasons that led to rejection of consent to donate included distrust, anger, and frustration resulting from communication problems with health professionals, making the candidate donor feel valueless, previous bad experiences and prejudgments about the institution, and not providing the appropriate physical conditions related to the comfort of the patient relative during the process. Some patient relatives, who will make a decision on behalf of the patient, may not understand brain death since no changes occur in the clinical state of the patient before and after the diagnosis of brain death and the patient’s heart continues to beat. The relative may believe the patient will suffer, try to protect the patient by feeling responsible for the patient, and feel scared of facing social reactions to donation. We suggest that awareness of such hidden obstacles before donation and having a reliable approach to these obstacles can assist with organ donation.

A successful donation process begins at the time that the patient arrives at the hospital with the patient relative and continues through the news of death received by the relative and the request directed to the relative for organ donation. During this process, we recommend planning at every stage, from the fulfillment of the physiological needs of the patient relative to effective and correct communi­cation practices, in line with the needs and expectations of the patient relative. Determining circumstances that could cause feelings of distrust in the patient relative and finding effective solutions for these problems are needed. A reasonable time is needed for relatives between the time they are told about brain death and when they are consulted for organ donation. These steps can more positively affect the donation process. We believe that the process will also be affected positively if cultural and religious views of patient relatives are taken into consideration and if they are contacted by a coordinator who has received communication training and has good communication skills.


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DOI : 10.6002/ect.2021.0295


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From the 1Sivas Cumhuriyet University Application and Research Hospital, Anesthesia Intensive Care Unit, Sivas, Turkey; the 2Sivas Cuhuriyet University, School of Medicine Department of Anesthesiology and Reanimation  Sivas, Turkey; and the 3Sivas Cumhuriyet University, School of Medicine Department of Medical History and Ethics, Sivas, Turkey
Acknowledgements: The authors have not received any funding or grants in support of the presented research or for the preparation of this work and have no declarations of potential conflicts of interest.
Corresponding author: Zuhal Gulsoy, Sivas Cumhuriyet University Application and Research Hospital, Anesthesia Intensive Care Unit, Sivas, Turkey 58140
Phone: +5305011726
E-mail: zuhalgulsoy@hotmail.com