Modern medical technologies facilitate the treatment of chronic diseases through organ transplantation.1 Organ transplantation can be living or cadaveric.2,3 The number of living-donor transplantations is insufficient owing to various difficulties affecting donors, such as surgical complications, interruption of social activity, and postoperative follow-up costs.4 Cadaveric transplantation involves organ donation from brain-dead patients. Various parts of the body can be donated, including the heart, lungs, liver, kidneys, pancreas, small intestine, and cornea; thus, donation from one person can save at least 8 lives.5 Organ donation from brain-dead patients can address the supply shortages and various risks associated with living-donor transplantations.
In South Korea, when a patient is presumed brain-dead, the medical staff reports it to the Korean Organ Donation Agency and interviews a family member or guardian.5 Brain death is determined at medical institutions designated to manage such organ donors.6 In most cases, the organ donation intention of patients presumed to be brain-dead is unknown; therefore, deciding on organ donation is challenging for families. Currently, organ transplant coordinators provide information about organ donation to family members and guardians and focus on ensuring that organ donation occurs smoothly.
Nurses are the only medical personnel providing patient care from before birth to after death. They maintain human dignity and provide person-centered care and emotional comfort to bereaved families.7 In intensive care units (ICUs), they perform intensive monitoring, provide treatment, and ensure end-of-life care for patients with unstable prognoses. End-of-life care includes psychological, social, spiritual, and physical care. Therefore, ICU nurses' awareness of organ donation affects the families' decisions.
However, unfortunately, ICU nurses experience negative emotions, such as frustration, sadness, and anguish, while caring for brain-dead donors. Repeated exposure to these situations increases their risk of psychological trauma.8 Moreover, treatment goals for patients hospitalized in ICUs differ considerably from those for brain-dead donors, making it vital for ICU nurses to evaluate their feelings toward organ donation by brain-dead patients.
Existing quantitative research methods are insufficient to clarify ICU nurses' experiences.9–12 There is therefore a need for qualitative research to analyze in-depth the experiences of nurses caring for brain-dead donors, considering cultural uniqueness.13 In particular, if nurses' experiences are understood well using phenomenological methods that can provide detailed explanations of complex social phenomena, basic data will be made available to develop the education and interventions necessary for South Korean ICU nurses.
METHODS Research DesignThis study used Colaizzi's14 phenomenological method to conduct a qualitative analysis of the experiences of ICU nurses who provide care for brain-dead patients. This study delved into the lived experiences and emotions of participants, identifying common themes rather than individual traits.
Selection of ParticipantsThe inclusion criteria were (1) at least 3 years of work experience in the ICU of a hospital-based organ procurement organization and (2) nursing experience with brain-dead organ donors at least once a year—based on data from 478 brain-dead organ donors reported in 2020 and 442 reported in 2021 in South Korea.15 Those who fully understood the study purpose, fulfilled the aforementioned criteria, and voluntarily agreed to participate were included.
Data Collection and ProcedureData were collected from June 27 to September 10, 2022. This study was approved by the relevant research ethics review committee (no. 2206-015-116). The interview guide was developed based on clinical expertise (M.S. and N.K.) and literature. The interviews started with an open-ended main question—“Tell me about your experience caring for a brain-dead organ donor”—and proceeded with questions about specific experiences. The study purpose, interview method, confidentiality, anonymity, voluntary participation, possibility of discontinuation, and withdrawal of interview data after the study purpose were explained to participants, and written informed consent was obtained. Participants were given sufficient time to interact during the interviews, which lasted 32 to 70 minutes. Interviews were audio recorded. During the interviews, the researchers recorded observations in a notebook such as participants' facial expressions. Participants were offered a shopping voucher (US $37.0) as compensation for their time. A summary of the initial analysis results was sent to participants who requested it. The recorded data were transcribed using a computer on the same day as the interviews. By listening to the audio recordings, the researchers recorded their thoughts and questions about ambiguous statements.
Data AnalysisIndividual interviews were transcribed in 7 steps.14 First, the transcriptions were read repeatedly to gain a comprehensive understanding of participants' experiences. Second, the researchers extracted essential statements from participants' experiences and those that appeared repeatedly. The extracted writings were checked by all researchers, and their opinions were discussed and integrated. Third, the researchers composed meanings by abstractly stating the hidden meanings of each main statement and then correlating and integrating them. Fourth, themes were organized by integrating and classifying similar meanings and grouping them into subject collections and then derived as categories. Fifth, the phenomenon represented by subject collection was comprehensively described as the center. Sixth, ICU nurses' experiences were described using categories, subject articulation, and themes. Finally, the validity of the results was confirmed among 10 participants.
RESULTSFrom the 10 participants, 132 meaningful statements, 12 themes, and 5 categories representing the experiences of ICU nurses caring for brain-dead donors were derived. The 5 categories were “nursing with regret,” “enduring agony from repeatedly caring for deceased organ donors,” “lack of a support system,” “deep emotional pain and scarring left after care,” and “balancing emotions.”
Category 1: Nursing With RegretWhen participants first started caring for brain-dead donors, they experienced significant difficulties. Despite being experienced, they had to provide care that was completely different from their previous work.
Theme 1: Caring for a Brain-Dead Donor for the First Time and Struggling With an Unfamiliar JobParticipants accepted caring for a brain-dead donor as a challenge. As if they were in their first job, they experienced anxiety and fear owing to unfamiliar work and felt embarrassed and frustrated. Owing to their heavy workload, nurses viewed caring for brain-dead donors only as tasks to be completed. When the family did not make a quick decision regarding organ donation or reversed their decision, participants felt it interfered with their work.
At first, I was really scared. I've seen it before, but I couldn't do anything because I didn't know what to do. I wished, “Please don't be my patient.” It really makes me embarrassed. (Participant 8)
To be honest, I was annoyed by the fact that the procedure was a bit more complicated. There were too many tests. (Participant 10)
Theme 2: Remorse After Caring for Patients Under Excessive Burden and PressureAll participants were required to care for other patients in addition to brain-dead donors. Brain-dead donors have many prescriptions that must be urgently addressed to maintain organ function. While working under such urgent conditions, participants felt vague anxiety that organ transplantation might go awry. Participants reflected that they hurried about performing their duties and failed to appreciate the patient's sacrifice or soothe their guardian's pain. Moreover, they regretted that they could not play the role of nurses.
It's scary, it's scary. 'Cause I am always super busy. My heart is always racing because something can't be missed. If I make a mistake, it's a stain on my record. It's my responsibility. (Participant 10)
I'm afraid this patient won't be able to complete the procedure because of me. I'm afraid of being the reason behind it. (Participant 7)
Category 2: Continuing AnguishParticipants witnessed various phenomena in the process of dealing with life and death, which led to complex ethical agony.
Theme 3: Ambivalence Over an Unnatural Dying ProcessWhen a patient scheduled for organ transplantation suddenly deteriorates, the medical staff administer drugs to maintain organ function. Participants felt that they were forcibly prolonging the process of natural death and keeping donors alive for the sole purpose of harvesting organs, which caused an ethical dilemma.
Doing things like this seems to undermine the dignity of this patient… I wondered if they were preventing this person from dying to save others. His organs have to live until the night because of an upcoming operation ahead. I thought I was not respecting human dignity at all. (Participant 9)
Theme 4: Skepticism Owing to Lack of Respect for Organ DonationParticipants felt that although brain-dead donors were technically still alive, some medical staff treated them as if they were dead. Participants felt disillusioned when they saw the careless attitude of the medical staff who thought only about organ transplantation. In South Korea, a lack of courtesy and respect persists among medical staff toward organ donors and caregivers.
The EKGs indicate that the person is alive, but everyone treats them as dead people. Why does everyone implicitly call them dead patients? (Participant 2)
I wish I could go all the way with the same mindset I had when I first persuaded the guardians. They (medical staff) pretended to give it their all, but later, their attitude appeared to be contemptible. (Participant 3)
Theme 5: Doubts Regarding Organ Donation Decision Process That Excludes Brain-Dead PatientsIn South Korea, if brain-dead patients' organs are donated, medical expenses are not imposed. Participants frequently witnessed situations when it was clear that family members or guardians made the decision to donate organs for economic reasons. Participants therefore had doubts about whether the patient's will was being respected.
At first, he had no relatives. I contacted several times to find a guardian and eventually succeeded. However, the family had never visited the patient, and suddenly, organ donation was decided. This was for obvious financial reasons. (Participant 2)
She made a failed suicide attempt, and when she woke up, she made a fuss in the hospital and went back to her house. Two days later, the girl returned from cardiac arrest. At that time, the topic of organ donation came up, and I was conflicted. She had wanted to die, but it seemed that she couldn't even do that the way she wanted. (Participant 6)
Category 3: Lack of a Support SystemParticipants did not receive regular education or guidance on regulations related to the care of brain-dead donors. Therefore, they had no choice but to take care of donors by observing and learning from senior nurses independently. This difficulty also caused confusion regarding participants' roles as nurses.
Theme 6: Absence of Formal Education and Practice RegulationsParticipants had never received systematic education on organ donation, including nursing care for brain-dead donors. Therefore, related work seemed more complicated. The only resources available were the experiences and advice of senior nurses. Participants sought better academic knowledge or experience as they taught junior nurses.
I have never been educated. It was overwhelming because I had to ask every time. There was no prior training, no information… really no data. So, things always got more complicated. (Participant 5)
I couldn't teach junior nurses with any formal education. It is just a collection of events I have experienced. I'm not even sure if this is correct. I don't have confidence. It is more so because there is no reference material. (Participant 1)
Theme 7: Confusion of RolesThe absence of formal education and regulations led participants to provide care based on empirical knowledge or tacit rules. Participants felt ambivalent regarding the areas and extent that they should be involved as nurses. They were confused about whether the scope of their actual role as nurses aligned with their thoughts.
Nurses must respect patients and their families. But how should I do it right? Should I tell them, “It was the right decision?” or “Are you having a difficult time?” Can I dare to comfort them? (Participant 6)
I thought no matter what I said, it wouldn't help much. No matter how many lives he saves, it will surely hurt the hearts of his family. (Participant 8)
Category 4: Deep Emotional Pain and Scarring Left After CareParticipants felt that their care for the brain-dead donor violated their nursing identity. These negative emotions permeated participants' lives, resulting in deep pain and emotional scarring.
Theme 8: Feeling Numb After Struggling in Repetitive SituationsParticipants sent brain-dead donors—whom they had provided cared to for a long time—to the operating room and repeatedly witnessed the return of an empty bed. They felt that they were participating in the process of taking a life. This is very different from the care provided for the sick, which leads to a peaceful life. Thus, participants experienced irreparable futility. As similar situations recurred, they gradually became numb as they attempted to accept the situation and forget the donors.
Going to the operating room, they usually undergo treatment. However, this person goes to die, honestly. It's so empty to come back with nothing… (Participant 8)
I did my best while providing close care to this patient, but it feels as if nothing has changed… It just feels like the railroad is suddenly cut off. It is utterly pointless… So, I just do what I have to do. This is just work. I believe I did my part during that time. (Participant 7)
Theme 9: Draw a Line In Your Heart and Distance Yourself From Patients and GuardiansTo avoid obtaining more emotional scars, participants distanced themselves from the brain-dead donors and their families because they believed that their efforts as nurses would not change their patients' present or future.
I avoid looking at the patient's face. When I look at their faces, my heart becomes involved. Now, I only focus on what I must do while thinking that I should view it as something inevitable… I think I must work with that thought in mind. (Participant 5)
At first, I memorized each patient's name. Now, I just talk about them using bed numbers. If you put all your heart into it like this, it becomes really stressful. You cannot understand everyone anyway. Everyone is different from me and people who die just die. (Participant 9)
Theme 10: Avoiding Organ Donation DiscussionsParticipants consciously avoided topics related to organ donation when communicating with family members. They believed that any explanation or guidance on organ donation should be provided by the doctor. Some participants believed that nurses should not be involved in family decisions regarding organ donation.
I don't mention organ donation. It is thought to be taboo. I don't want to cause any misunderstanding. I just stop talking. (Participant 1)
Organ donation can be talking about the death of a patient. It is dangerous for me to refer to death or brain death, no matter how knowledgeable I am. (Participant 5)
I think donation should depend entirely on the judgment of the guardian. I have a duty to explain as the nurse, but I honestly don't want to intervene. As the conclusion leads to death… I don't think words are needed. (Participant 4)
Category 5: Balancing EmotionsParticipants tried to honor the sacrifice of a brain-dead donor. While performing their duties, participants regained their driving force as professional nurses and balanced their emotions.
Theme 11: Being Comforted by Respecting Living Beings and Giving Their Best CareParticipants perceived the brain-dead donors as living beings. Remembering their noble sacrifices, they sincerely cared for them until death. Participants comforted themselves while fulfilling their duties as nurses and gained the impetus to continue their work.
Now I know that this man really has no breath left. I really want to take good care of him until the end, and I want the patient to be as comfortable as possible. (Participant 4)
The brain-dead are people too. I'm sure he will feel uncomfortable too. So, we have to do more. I know there is little I can do. I wipe the spittle and close my eyes so he can say goodbye with a clean face. Bye. (Participant 6)
Theme 12: Believe in the Positive Impact of Organ Donation and Project It Into LifeParticipants realized the necessity of organ transplantation while having direct or indirect experiences with the recipient. They were convinced of the positive influence of organ donation because while they had to watch someone die, others were eagerly awaiting a new life. Participants hoped that more people would receive the miracle of life from their fellow humans. As professional nurses, they expressed their intention to donate their organs, project their benefits into their lives, and grow while balancing their emotions.
ICU nurses rarely see patients getting better. I hope other nurses can have similar experiences as I cared for patients who became healthy after receiving organ donation. Organ donation has many problems, but the positive side will surely be seen in the eyes of nurses first. (Participant 5)
It would be nice if the merits of organ donation were highlighted and some of the procedures were disclosed. If perceptions change, wouldn't it be less emotionally difficult for nurses? I will also donate. I wish myself, my guardians, and patients a happy ending. (Participant 7)
DISCUSSIONThis study investigated the structure and nature of ICU nurses' experiences of caring for brain-dead donors and aimed to gain an in-depth understanding of these experiences. The findings revealed that the experiences of caring for brain-dead donors can be categorized into “nursing with regret,” “enduring agony from repeatedly caring for deceased organ donors,” “lack of a support system,” “deep emotional pain and scarring left after care,” and “balancing emotions.”
Intensive care unit nurses recognized that they were caring insufficiently for brain-dead donors because of their lack of experience and heavy workloads. Despite their prior experience, caring for brain-dead donors seemed entirely new, which puzzled them. This aligns with findings by Magalhães et al.8 When an invasive procedure is performed on brain-dead donors to preserve organ function, even if death is imminent, it is a forcibly prolonged end. Some medical staff did not respect or treat brain-dead donors with dignity, and the organ donation decision-making process lacked transparency, leaving nurses in agony.8
As organ donation is infrequent in hospitals in South Korea, care for brain-dead patients is rare. Intensive care unit nurses were not aware of the chronology of the brain-dead organ transplantation process. As the nurses encountered few brain-dead patients, they could not predict which procedures or nursing care aspects would be required later. Their limited experience led to anxiety,16 causing them to lose confidence in their work.
Further, ICU nurses in South Korea care for critically ill patients and brain-dead donors together and experience difficulties in providing end-of-life care.17 Owing to their increased work burden, these nurses believe that they have not provided sufficient care.17 Moghaddam et al18 revealed that ICU nurses focused on the survival of patients about to donate organs when there was insufficient workforce to support them. They experienced an emotional dilemma as they felt the finitude of life and their own weakness, along with the fact that they viewed the patient as someone who had already died. These experiences led to emotional turmoil and physical overload for the nurses. Magalhães et al8 uncovered that nurses felt contradictory emotions and complained of pressure, fear, and stress when performing treatment for organ function preservation, even though the patient was already brain-dead.17 Thus, the difficulties experienced by ICU nurses must be understood, and efforts to reduce their workloads must be made.
Intensive care unit nurses experience a substantial lack of support when caring for brain-dead donors. Existing education should be prioritized to encourage and promote organ donation. Practical training, such as an explanation of the overall process of organ donation or guidelines for tasks required at each stage, remains nonexistent.
Intensive care unit nurses were highly cautious about interference when family members of brain-dead patients donated organs. This was because the nurses were afraid of the responsibility this placed on them.17 Nurses' low self-confidence because of limited knowledge affects actual family decisions.16 Similarly, Ahn et al19 revealed that ICU nurses avoid comments that can affect the organ donation decisions of patients or families owing to the absence of legal regulations and evidence. Therefore, nursing intervention protocols and guidelines that can serve as the basis for the practice of ICU staff must be formulated, and continued education must be provided.20 The confidence and efficacy of ICU nurses can be improved if an intervention using a simulation or virtual reality is provided so that nurses can experience a virtual patient in advance.
Intensive care unit nurses sent brain-dead donors to the operating room for organ harvesting and witnessed many empty beds being brought back afterward. They recognized that they were directly involved in the patient's death, which caused guilt and confusion regarding nursing identity. To escape their psychological pain, nurses became callous and hesitant to form relationships, focusing more on their work.
In previous studies, nurses considered facing the families of brain-dead donors a psychological burden.18,20 They feared that they may not be able to empathize with the emotional pain of the family members.21 Support for the psychological difficulties nurses experience while facing repeated deaths of patients is insufficient; therefore, nurses are forced to endure this on their own.22 A support system, such as counseling sessions, is needed to increase the therapeutic understanding of organ donation among nurses in ICUs and related departments and to help them cope with psychological burnout.
Despite various difficulties, ICU nurses attempted to balance their emotions by treating brain-dead donors as if they were alive. The nurses did their best until the patient's last breath and then moved on. These efforts also helped comfort the nurses. Previous studies have suggested that a correct understanding of brain death can alleviate the psychological stress experienced by ICU nurses.23 This can be helpful in increasing self-esteem and improving nursing professionalism through positive reinforcement via education or workshops related to brain death.
The ICU nurses were aware of the need for organ donation while caring for beneficiaries who had gained a new life through organ transplantation. In South Korea, only organ transplant coordinators are permitted to know which patients have received donor organs. Intensive care unit nurses cannot attest to the sacrifice of brain-dead donors for whom they care. Therefore, nurses hoped that a plan to supplement these points would be implemented so that they could feel that their nursing had some value.
In addition to national efforts, legal supplementation is necessary to activate and improve awareness of organ donation from brain-dead patients. In the United States, if patients who are brain-dead express consent for organ donation when alive, it takes precedence over the family's decision.23 Moreover, in South Korea, even if the brain-dead patient has previously consented to organ donation, organ donation cannot be performed if the family does not agree. In some countries, such as Australia and Belgium, the opt-in/out system partially recognizes the family's role in the patient's organ donation intention; however, this does not take precedence over the patient's right to self-determination.23 Improvements in the system would increase the preapplication rate for organ donation among the public and reduce the difficulties faced by families in deciding on organ donation. Moreover, the improvement in awareness of organ donation among brain-dead patients will contribute to improving the professionalism of the medical staff.
CONCLUSIONUsing Colaizzi's14 phenomenological method, this study attempted to understand the experiences of ICU nurses caring for brain-dead donors. Interventions and the role of ICU nurses who care for brain-dead donors must be clarified, and specific guidelines must be developed. Educational programs that use various methods, such as simulation, are warranted. A counseling program should be developed for the emotional and psychological support of ICU nurses caring for brain-dead donors. Intensive care unit nurses' behavior, processes, and structures while caring for brain-dead donors need comprehensive analysis through grounded theory methods, encompassing various perspectives and aspects of change in the caregiving process.
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