Qualitative Analysis of Factors That Hinder Intensive Care Unit Nurses in Western China From Encouraging Patients to Donate Organs

Qualitative Analysis of Factors That Hinder Intensive Care Unit Nurses in Western China From Encouraging Patients to Donate Organs

Qualitative Analysis of Factors That Hinder Intensive Care Unit Nurses in Western China From Encouraging Patients to Donate Organs He Donga, Li Lina, ...

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Qualitative Analysis of Factors That Hinder Intensive Care Unit Nurses in Western China From Encouraging Patients to Donate Organs He Donga, Li Lina, Xia Xua, Xiaochong Hea, Qin Yangb, Jiasi Zhangc, Lei Leia, Yue Luoa, Jing Denga, Dong Yid, and Yu Luoa,* a School of Nursing, Third Military Medical University, Shapingba District, Chongqing, P.R. China; bDepartment of Nephrology, Southwest Hospital, Third Military Medical University, Shapingba District, Chongqing, P.R. China; cDepartment of Hematology, Southwest Hospital, Third Military Medical University, Shapingba District, Chongqing, P.R. China; and dDepartment of Health Statistics, Third Military Medical University, Shapingba District, Chongqing, P.R. China

ABSTRACT Background. Organ transplantation is an important method to save the lives of patients suffering from organ failure. However, the low rate of organ donation is a common problem worldwide. Many potential organ donors in the intensive care unit (ICU) are not properly identified, which is one reason for the low donation rate. ICU nurses play a key role in organ donation but may be uncertain regarding some issues. In this study, an analysis of the reasons why ICU nurses in western China are reluctant to encourage patients and their families to donate organs is performed, providing a reference for promoting ICU nurse participation in organ donation work. Methods. From August to November of 2017, using a purposive sampling method, we conducted semi-structured, in-depth interviews using a phenomenological research method with 18 ICU nurses who were working in 4 large hospitals with organ transplant accreditation in Chongqing City, China, and analyzed the data with phenomenology. Results. Reasons for the reluctance of ICU nurses in encouraging patients to donate organs were categorized into the following 4 themes: limitation of the nurses' professional role, influence of the family’s negative emotions, lack of training regarding organ donation in medical institutions, and impact of a conservative social attitude. Conclusion. Chinese medical and health institutions need to attach importance to the duties and roles of ICU nurses in organ donation work, the creation of a good death culture, the implementation of training for organ donation specialist nurses, and the strengthening of advocacy efforts for organ donation so that ICU nurses’ reluctance in engaging in organ donation coordination in China can be mitigated and the nurses can better participate in promoting organ donation to potential donors.

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T is well known that organ transplantation is one of the most important means of saving the lives of patients with organ failure, but the lack of organ donors is the key limitation to organ transplantation. Since the first organ transplantation in mainland China was performed in 1972, the variety of organs transplanted in China has grown such that it now ranks second in the world, behind the United States [1]. However, since the total cessation of the use of organs from death row prisoners in China in 2015, China Donation after Citizen's Death has become the main source

The first 2 authors contributed equally to this work. Grant information: This study was supported by a National Natural Science Foundation of China (81172733), a National Social Science Fund of China (19XRK001), a key project of Third Military Medical University Humanities and Social Science Fund (2017XRW05), and a key project of School of Nursing Innovation Fund (2019HLCXZ03). *Address correspondence to Professor Yu Luo, MD, School of Nursing, Third Military Medical University, No. 30 Gaotanyan St, Shapingba District, 400038, Chongqing, China. Tel: þ86 15730142871. E-mail: [email protected]

0041-1345/19 https://doi.org/10.1016/j.transproceed.2019.10.017

ª 2019 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http:// creativecommons.org/licenses/by-nc-nd/4.0/). 230 Park Avenue, New York, NY 10169

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Transplantation Proceedings, 52, 20e25 (2020)

ANALYSIS OF FACTORS THAT HINDER ICU NURSES

of donors [2]. Influenced by various factors, including the traditional culture, the number of organ donors per million population in China was only 3.7 in 2017. This is far lower than in Spain or Italy, which have 46.9 and 28.5 donors per million population, respectively [3]. According to statistics, the number of potential organ donors is approximately 3 times that of actual donors, 40% are from intensive care units (ICUs) [4,5]. Therefore, it is imperative to obtain consent from the families of potential organ donors and to promote the successful implementation of the patient’s organ donation [6]. Drawing from the experiences and practices of other countries such as Spain and Italy, where ICU personnel actively encourage patients to donate organs, can help improve the organ donation rate [7,8]. Because ICU nurses directly provide care to a patient for a long time, they have the advantage of establishing a good relationship with the patient’s family and helping them make decisions about organ donation [9]. Unfortunately, most ICU nurses in China do not have experience in encouraging family members of potential deceased donors to donate the patients' organs [10]. Relevant research on this issue in China's western region is particularly lacking. Thus, we conducted targeted qualitative interviews with ICU nurses in cities in the western region of China to gain an understanding about the reasons why they are reluctant to participate in encouraging potential organ donors to donate their organs, and to provide implications on how to have ICU nurses play an active role in organ donation and references for countries in a similar situation. METHODS Research Patients Using a purposive sampling method, we conducted in-depth interviews with 18 ICU nurses who were selected from 4 hospitals with organ transplant accreditation in western China from August to November 2017. The sample size was determined on the principle of data saturation. Inclusion criteria included the following: 1. has worked in the ICU 1 year; 2. has obtained the qualification certificate; 3. has good communication skills; and 4. signed the informed consent. The respondents were all female, age 23 to 44 (30.11  6.36) years, with an ICU work experience of 1 to 24 (7.67  6.10) years. The general information of the respondents is shown in Table 1.

Data Collection Interviews were conducted by 2 researchers using the phenomenological research method for qualitative interviews. The semistructured interview outline was designed by surveying the relevant literature according to the research purposes, on which the views of relevant experts were sought, and used with 2 ICU nurses for preliminary interviews; based on the results, the interview outline was amended and modified. The interview content is shown in Table 2. The researcher made contact with the interviewee in advance to set the interview time and place to ensure that the interview environment was quiet and undisturbed. The whole interview was recorded, and the researcher listened attentively to the interviewee while carefully observing the expression and emotional changes of the respondent and taking notes. Each interview took 30 to 60 minutes.

21 Table 1. Participants Characteristics Coding Age, y

Sex

Enrollment, y Professional Title

S1 S2

33 44

Female Female

10 24

S3 S4 S5 S6 S7 S8 S9 S10 S11 S12

28 24 23 39 23 23 23 28 23 35

Female Female Female Female Female Female Female Female Female Female

4 2 2 13 1 2 2 4 2 13

S13 S14

33 34

Female Female

11 12

S15 S16 S17 S18

35 35 27 32

Female Female Female Female

11 11 4 10

Senior nurse Supervisor nurse Senior nurse Junior nurse Junior nurse Senior nurse Junior nurse Junior nurse Junior nurse Senior nurse Junior nurse Supervisor nurse Senior nurse Supervisor nurse Senior nurse Senior nurse Senior nurse Senior nurse

Degree

Bachelor Bachelor Bachelor Bachelor Associate degree Associate degree Associate degree Associate degree Associate degree Bachelor Associate degree Bachelor Bachelor Bachelor Bachelor Bachelor Bachelor Bachelor

Data Analysis and Quality Control After the interview, 2 interviewers who conducted the interview checked the sound recording and transcribed it into text data, and the transcript was analyzed using Colaizzi's 7-step analysis method, which instructs researchers to [11]: 1. read all the interview data carefully; 2. extract important narratives significant to the research theme; 3. encode the views that repeatedly appear in the narratives; 4. categorize the encoded views into themes, theme groups, and categories; 5. make detailed and exhaustive descriptions; 6. generalize views with commonalities and determine the concept of the theme; and 7. go back to the respondent for verification. In order to ensure the reliability of data analysis, other members of the research group review the data to ensure that the content reflects the real thoughts of the interviewees.

ETHICAL CONSIDERATIONS

The Institutional Review Boards of our institution approved the study (No. 2017-0521). Before the interview, the purpose of the study was explained to the respondents, and their written informed consent was obtained. All Table 2. Interview Outline Content 1. Do you think nurses can promote patient participation in the action of organ donation? Why? 2. When you have come across a potential organ donor, have you encouraged the patient to donate his/her organs? (1) Yes e A. What difficulties have you encountered in the process? B. What do you think are the reasons for these difficulties? (2) No e What are the reasons for the inaction? 3. Would you like to encourage potential organ donors to donate their organs? 4. What factors influence your willingness to encourage potential organ donors to donate their organs?

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participants were ensured of the confidentiality of their data. This study is completely in compliance with the Helsinki Congress and Istanbul Declaration (supporting OPO and IRB documents are available for this article online, as supplementary material). In addition, our research focuses on the issue of ICU nurses' willingness to encourage others to donate organs, which does not involve the actual issue of organ donation. RESULTS

After an analysis of the factors that hinder ICU nurses from encouraging patients to donate organs, we summarized these factors and identified 4 themes: limitation of the nurses' professional role, influence of the family’s negative emotions, lack of training regarding organ donation in medical institutions, and impact of a conservative social attitude. Theme 1: Limitation of Nurses' Professional Role

Nurses’ responsibilities in organ donation work are unknown, and their roles are unclear. In this study, some respondents thought that nurses are not prescribed with the duty of participating in encouraging patients to donate organs and that this work should be performed by doctors or other professionals. S3: I think the work of encouraging patients to donate organs should be done by those with more comprehensive professional knowledge, stronger communication skills, and more dedication. S6: I am not obligated to talk about organ donation with the patient’s family and have not thought about it (encouraging patients to donate organs). S12: We will definitely not participate, and it is not our role to do so, because organ donation involves communication about the disease condition, which is dealt with by the doctor in charge of the patient, and not by nurses. Workload is heavy, and nurses only have limited time to communicate with patient’s family members. Some respondents maintained that encouraging patients to donate organs would increase the workload, and ICU nurses are too busy to be involved in this task; in addition, nurses work in shifts and are limited in time to communicate with the patient’s family members. S2: The patient is seriously ill, and I need to write a lot (care records) and have no time to communicate with the patient’s family members. S5: The work keeps me very busy, and if I discuss this with the patient’s family members, they may ask me about it repeatedly, and this is a drag. S12: I have no time to be involved in this task; we take shifts, and there is no time for us to discuss this with the patient’s family members. Lack of recognition from patient’s family members. We found that the task of encouraging patients and their families to donate organs involves the aspect of informing the family members about the patient's condition, and in this regard, nurses generally believe that in communicating with the patient’s family members or talking about the illness, the patient trusts the doctors more, while nurses are not as well recognized by patients and their families. S1: Many patients’ family members are doubtful about nurses’ expertise, and doctors’ words are more authoritative. S14: I believe that even if nurses try to persuade

DONG, LIN, XU ET AL

the patient’s family members, the family members would not listen; they trust doctors more. S15: Doctors have better knowledge about the patient’s overall condition, including the progression and outcome of the illness; when they discuss this issue with the family members, it is more persuasive and convincing. Information sharing about organ donation from doctors is lacking. We found that doctors and personnel from organ transplantation-related departments are the first to receive information about the organ donation of potential organ donors, and when communicating with the patient’s family members about the donation, doctors rarely seek the assistance of nurses. Therefore, the ICU nurses lag behind in obtaining information about the organ donation of potential organ donors. S5: Doctors will not tell me they have discussed organ donation with the patient’s family members, and there are concerns regarding the privacy of patients and their families. S13: The people who are in charge of organ transplantation in our hospital and the doctor in charge of the patient are in the leading position (in coordinating organ donation), and they have better knowledge about the patient’s illness and are more sensitive to the information about organ donation than us; doctors and those in charge of organ donation are the first to know which patient can donate, whether the patient’s family is willing to donate, and when to donate, and we are always the last to know. Theme 2: Influence of Family’s Negative Emotions

Patient’s family members often hold too high of an expectation about treatment outcome. We found that because of the higher hospital costs of ICU care, compared with those of the patients who give up inpatient treatment, family members of critically ill patients who carry out treatment in an ICU often hold a higher expectation about the treatment results, are mostly less inclined to subjectively accept the reality of death due to the illness, and often have the misunderstanding that health care personnel give up active treatment on the patient just for harvesting organs. S9: ICU patients are all in grave condition, and their families are willing to send them here (ICU) and want them to be cured; in the end, if the illness is incurable, and organ donation is mentioned, it may be like pouring oil on the fire. S10: Those family members that want us to try everything to save the life of the patient are extremely concerned about the life of the patient, and when organ donation is mentioned, they may think that nurses are not trying their best to save the patient’s life and are giving up on active rescue work simply to obtain organs. Patient’s death has dealt a heavy blow to family members. Several respondents mentioned that the death of the patient has already brought great grief to the patient’s family members, so at that time, nurses cannot talk about organ donation to them. Moreover, the bad news of the patient’s death often causes anger and emotional instability in them, and talking about organ donation may lead to antagonism. S3: The family is about to lose a loved one, and at that time, if we still persuade the family members to donate the organs of their loved one, they may become very angry when they are still in grief.

ANALYSIS OF FACTORS THAT HINDER ICU NURSES

S6: In the ICU, deaths are frequent, and the family members are greatly saddened by the loss, and it is very difficult for me to talk about organ donation to them, and I do not know how to start talking about it. Patient’s family members hold a negative attitude towards organ donation. Six respondents indicated that whether or not to discuss organ donation with the patient's family depends on the family’s attitude. If the patient and the family have a willingness to donate organs and want a consultation from the nurse, the nurse can provide relevant information but will not take the initiative to ask them to donate; if they despise the idea of organ donation, the nurse will not even mention organ donation to them. S17: Some people are more sensitive to this donation thing, and I would not talk about it with them. S9: Sometimes it is very difficult to communicate with the patient’s family members about organ donation, especially when the patient’s condition has been deteriorating; it is not a good time to talk about it. S13: I would talk with them about this issue exploratorily at first, and if they despise the idea or do not want to talk about it at all, I would not press on. S15: In general, when they have the intention of donating, they would consult the doctor or us, then we would give them the necessary information. Theme 3: Lack of Training Regarding Organ Donation in Medical Institutions

Advocacy for organ donation awareness is inadequate. We found that many ICU nurses are not familiar with the evaluation criteria of organ donation and the related policies and procedures and cannot answer questions raised by patients and their families regarding organ donation, making it impossible for them to gain the trust of patients and their families. S3: We do not know what organs a potential organ donor can donate and are unable to assess this since we do not know the standards and need special training. In addition, we do not know the donation procedure, so the patient’s family members do not trust us about this. S18: I do not know much about how to encourage patients to donate their organs. Training regarding communication skills related to organ donation lacks. Respondents thought that they had not received any training regarding organ donation and lacked communication skills when communicating with the patient’s family members, which is prone to cause conflicts with the family. S4: The family is suffering from the pain of losing their loved one, and at that moment, persuading them to donate organs requires a lot of communication skills, which I do not have. S6: It will cause conflicts when we talk about organ donation with the patient's family without mastering the communication methods. How to communicate with them? We lack the communication skills. Theme 4: Impact of a Conservative Social Attitude

Misunderstanding caused by financial compensation system. Some respondents believed that although there is some financial compensation for organ donation, the

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patient’s family members are unclear about the compensation policy and tend to suspect that nurses reap economic benefits from organ donation when nurses mention donation to them, which makes many nurses reluctant to participate in encouraging patients to donate organs. S7: The patient’s family members may strongly oppose the idea and are thinking: are you trying to make money from it? S15: At present, the majority of patients and their families do not understand us and think that we are profiting and getting paid from whatever we are doing, so we try our best to not talk about organ donation with patients to avoid misunderstandings from them and their families. Negative impact of nurse-patient relationship tension. Multiple interviewees mentioned the widespread problem of the tension between nurses and patients in China, and the incidents of insulting and attacking nurses have been rather frequent. In this social context, patients and their families do not trust nurses and vice versa. Because of the special management method in the ICU, the patient’s family members are not allowed to enter the ward at any time, leading to little communication time between the ICU nurse and the patient's family, which further aggravates the distrust between the 2 parties, and organ donation may trigger medical disputes. S3: Even when I assume my normal duties, I may be verbally abused, called bad names, beaten, injured, or even killed by the patient; in this kind of medical environment, medical personnel are rather wary of patients. S5: If something bad (about organ donation) happens, the patient’s family will be relentless, mainly because the doctorpatient relationship is too tense now. S10: According to the rules, the patient’s family members are not allowed to enter the ICU ward at any time and do not know what the medical personnel are doing inside, so there are risks of conflict between the medical personnel and patients. DISCUSSION Clarify Duties of ICU Nurses in Organ Donation Work While Providing Protection for Their Involvement in Organ Donation Work

The primary responsibilities of the ICU nurse are to save the patient's life, maintain the physiological function of the patient who cannot avoid death, and give the patient psychological care [12]. When faced with a situation in which a patient chooses to donate organs, ICU nurses still regard potential donors as patients who need to be actively treated, and this creates an ethical dilemma [13]. In this study, we found that medical institutions have not required ICU nurses to be involved in work related to promoting organ donation. Because of the heavy workload of caring for critically ill patients in the ICU and the large amount of time required to communicate about organ donation issues with the family members of potential organ donors, most nurses view involvement in organ donation as an extra burden. The management of medical institutions and the leaders of ICU departments should attach more importance to organ donation work, work together to develop

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the specifications and regulations of the duties of nurses in the work of organ donation, encourage nurses to participate in the coordination of organ donation, and provide a matching institutional guarantee. To assist ICU nurses in facing the ethical dilemmas of caring for organ donors, educators should make it clear in their training that organ donation is carried out after full medical treatment fails and that donation is compatible with ethical and legal norms. We envision that an organ donation incident reporting system can be established by learning from the models and management practices of the Polish serious adverse reactions and events system in organ donation and transplantation [14]. Such a system would allow nurses to report hindrances and disputes encountered when participating in coordinating organ donation, so that management can take note of problems that arise and address issues regularly in meetings held in the hospital, especially in the ICU department. Management can also analyze ethical dilemmas and problems and propose solutions to help ICU nurses think about ethical issues in practice and be better prepared to participate in organ donation. Help Patients' Families Rationally Understand the Value of Medical Treatment and Create a Good Death Culture

People’s fear of death affects their willingness toward organ donation and thus impedes the improvement of the organ donation rate [15,16]. We found that there is a phenomenon in which the family members of critically ill patients hold too high of an expectation about the treatment, and this phenomenon is associated with an unclear understanding of the value of medical treatment and fear that the patient is about to die. In addition, the patients’ family members are overwhelmed with the pain of the patient’s imminent death, in that setting, it is very ethically and morally taxing for the family members to donate the organs of the patients. On the one hand, ICU nurses should be patient and listen to the treatment desires of the patient’s family members, help them to have an objective understanding about the patient's condition, and clarify the treatment goal that can be reasonably achieved. On the other hand, the management of medical institutions should regard changing the traditional concept of death of medical staff, patients, and patients’ families as an important part of organ donation promotion. First, special training regarding the concept of death should be conducted with medical personnel so they can establish a scientific view of death and are able to discuss death and organ donation with the patient and the patient’s family members more rationally and naturally [17]. Second, ICU departments can provide death education brochures, videos, and other information for the families of patients suffering from a terminal illness to help them recognize the objectivity of life, reduce the fear of death, and face death calmly, thereby enhancing their acceptance of organ donation. These measures also have certain significance to the Asian countries that are influenced by Confucian culture, such as Korea and Japan.

DONG, LIN, XU ET AL

Learn From Organ Donation Training Methods in Developed Countries

Training can improve nurses’ awareness about organ donation and their willingness to participate in the coordination of organ donation and can also help doctors be more aware of the importance of the role of nurses in the collaboration of organ donation [18]. In China, a hospital has set up specialist nurse posts for cardiac death, and after 2 years of practice, the number of organ procurements has increased [19]. Thus, the management of medical institutions can learn from the experience of Tongji Hospital and establish similar specialist nurse posts to conduct specialized training, drawing experience from practices in Spain, Italy, and other countries. In terms of training content, first, nurses should be trained on the knowledge of organ donation, including the criteria for brain death and cardiac death, criteria for potential organ donors, organ donation procedures, organ allocation principles, and organ donation compensation policies. Second, nurses should be trained regarding communication skills for organ donation, including family ethics, how to inform the survivors about death, humanistic care and effective communication skills for the family of the dying patient, and the proper wording and attitude for obtaining organ donation consent. Third, nurses should be trained to handle problems that may occur in organ donation, including related laws, work injury identification, traffic accident identification, and commercial insurance claims [20e22]. In terms of the training method, the online training program [18] offered in Spain can be adopted, where medical personnel are subjected to online teaching by specialists from the Red Cross during a department shift change or weekly meeting. With the widespread application of smart phones, organ donation applications (apps) can be developed, in which a theory learning module and corresponding practice game module can be built, so medical personnel can learn with the app during fragmentary time, making learning about organ donation simple and easy. Establish a Positive Public Opinion and Alleviate the Crisis of Organ Donation Trust Caused by Doctor-Patient Tension

Trust in medical institutions and health care workers is an important factor in achieving and maintaining a high level of organ donation [23]. In this study, we found that the patient’s family can receive financial compensation after organ donation according to the provisions, but because of the lack of trust by the patient’s family members of medical personnel, ICU nurses’ initiatives for providing information about organ donation has often been viewed as a behavior of economic interests. ICU nurses worry that their involvement in coordinating organ donation may intensify the doctor-patient tension, and thus refuse to participate in encouraging the patient to donate organs. Therefore, understanding the relevant policies of organ donation and strengthening mutual trust is key. On the one hand, nurses must understand the relevant content of the financial

ANALYSIS OF FACTORS THAT HINDER ICU NURSES

compensation system; on the other hand, it is recommended that administrative departments improve the transparency and fairness regarding the use of the organ donation fund to earn the trust of the general public about organ donation. Lastly, social media should increase efforts in reporting positive events about organ donation and strengthen the advocacy of organ donation and the related policies. CONCLUSION

The willingness of ICU nurses in western China to actively participate in the work of obtaining a patient’s organ donation consent is affected by a variety of factors. Establishing better management strategies is necessary to help improve nurses’ understanding of ethical considerations, to increase the organ donation rate, and to maximize the use of organ transplantation to save the lives of patients with organ failure. SUPPLEMENTAL MATERIAL

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