Article Text

Original research
Organ donation decision-making in ICU patients: from the perspectives of organ coordinators and physicians in China – a qualitative study
  1. Xi Yang1,
  2. ChaoQun Chen2,
  3. Kun Geng2,
  4. Xuedong Jia1,
  5. FangYing Si1,
  6. XiaoJing Lu1,
  7. Wan Zhang1,
  8. Shuzhang Du1,
  9. Xiaojian Zhang1,
  10. Wenzhi Guo3,
  11. Zhao Yin1,4
  1. 1Department of Pharmacy, The First Affiliated Hospital of Zhengzhou University, Zhengzhou, China
  2. 2Organ Procurement Organizations, The First Affiliated Hospital of Zhengzhou University, Zhengzhou, China
  3. 3Department of Hepatobiliary and Pancreatic Surgery, The First Affiliated Hospital of Zhengzhou University, Zhengzhou, China
  4. 4Institute for Hospital Management of Henan Province, Zhengzhou, China
  1. Correspondence to Mr Zhao Yin; yinzhao0601{at}163.com; Professor Wenzhi Guo; fccguowz{at}zzu.edu.cn

Abstract

Objectives Intensive care unit (ICU) dying patients are the most important source of organ donation. This study explores the reasons affecting organ donation in the Chinese sociocultural context from the perspectives of coordinators and physicians, and further seeks countermeasures to alleviate the shortage of organs.

Design and setting Semistructured interviews conducted in a large tertiary hospital in China.

Participants and method 15 respondents (including 8 organ coordinators and 7 ICU physicians) were interviewed. Participants were invited to describe the factors that influence organ donation and the underlying reasons behind it. Bronfenbrenner’s socioecological system model was used as theoretical support to construct a theoretical model of the factors influencing organ donation. Respondents participated in semistructured qualitative interviews that were audio-recorded and transcribed. The relevant data were analysed using thematic analysis.

Results Four themes that influenced organ donation were identified including the influence of the deceased person’s attributes, immediate family members, surrounding people and the environment, and the social-level factors. In addition, we obtained four strategies from the interviews to improve the organ shortage to ameliorate the current supply–demand imbalance in organ donation. These include multilevel publicity, relevant policy support, increasing other forms of supply and reducing organ demand.

Conclusions Factors affecting organ donation after the death of a Chinese citizen include the personal characteristics of the donor, the decisions of family members such as immediate family members and the indirect influence of surrounding people such as collateral family members, in addition to factors related to the humanistic environment, religious beliefs and social opinion.

  • decision making
  • qualitative research
  • ethics (see medical ethics)

Data availability statement

Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplemental information.

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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • The strength of this study lies in the qualitative approach used to explore the factors influencing organ donation after the death of a citizen by interviewing organ coordinators and front-line intensive care unit (ICU) physicians.

  • The participants in this study were organ coordinators and front-line ICU physicians who were involved in the entire process of organ donation decision-making by the deceased’s family throughout their work.

  • This study constructs a theoretical model of the factors influencing organ donation based on Bronfenbrenner’s socioecological system theory.

  • The participants were organ coordinators and ICU physicians from a single region in China, and the results may not be generalisable to other regions.

Introduction

Organ transplantation is the treatment of choice for most patients with organ failure.1 However, the demand for organs far exceeds the supply.2 3 Between 2015 and 2019, China completed a cumulative total of 24 112 cases of deceased organ donation. In 2019, China completed 5818 deceased organ donations and 19 454 organ transplants. The organ donation rate per million population increased from 2.01 in 2015 to 4.16 in 2019. Although the number of organ donations in China has been the second largest in the world for five consecutive bureaus since 2016, it still fails to meet the huge gap in the demand for transplants, and the shortage of donors makes it urgent to find out the factors affecting organ donation.4

Dying patients in the intensive care unit (ICU) are the most important source of donated organs.5 However, the factors influencing their decision to donate organs remain unclear. One of our research focuses is to explore what kind of family will support or refuse organ donation in the face of the departure of relatives. At the same time, we are more concerned about what causes the families to make different decisions. Some Chinese scholars have carried out qualitative studies on the influence of family on organ donation,6 suggesting that the main factors affecting donation are lack of knowledge, fear, traditional beliefs and mistrust in the donation process. They posit that these effects can be mitigated by establishing a family-based communication model. This may be part of the factors affecting organ donation, and we hope to tap into the broader and deeper factors affecting organ donation in China.

Most previous qualitative studies focused on populations of potential organ donors who had already expressed their willingness to donate or families who had already performed organ donation, while other studies conducted interviews by recruiting volunteers or selecting specific populations.6–9 To our knowledge, there are some drawbacks to those designs. First, although selecting organ donor families for interviews is the most direct perspective, it is difficult to interview families who refuse to donate. Second, there was a large difference between most of the volunteers or potential donors interviewed in their mindset at the time of the interview and when they were faced with the death of a loved one and had to make a real donation decision, which may have biased the study results. To overcome these shortcomings, we selected organ coordinators and ICU doctors with experience as interviewees because in their daily work, they come in contact with deceased patients and their families from different occupations, ages and cultural levels. These front-line workers witness the entire process when a family decides whether to donate or not. The nature of their work, thus, makes their opinions closer to the truth. The objective of our study was to explore the reasons affecting organ donation in the Chinese sociocultural context, and further seek countermeasures to alleviate the shortage of organs.

Methods

Participants

A purposive sampling method10 and snowball sampling11 were used to select participants (eight organ coordinators and seven ICU doctors) from the First Affiliated Hospital of Zhengzhou University, which is a large tertiary hospital with a large number of beds. The hospital consists of four campuses, with a total of 23 ICU units and 665 beds for ICU patients. For the past 3 years, it has been ranked as 1 of the top 10 hospitals (in terms of the number of surgeries) in China for liver transplantation, kidney transplantation and lung transplantation.

Organ coordinators’ main job is to identify potential organ donors, collect clinical information, communicate with donor families and facilitate the smooth implementation of organ donation.12 13 In China, ICU physicians are the first to encounter potential organ donors. Selecting these two groups of people as respondents made it easy for us to uncover the factors that affect organ donation. The inclusion criteria were as follows: organ coordinators must have a bachelor’s degree or above and at least 1 year of work experience; ICU doctors must have a master’s degree or above and at least 10 years of work experience because organ donation is only involved when the patient is dying and has lost the point of saving his life, and not every ICU doctor has been exposed to such scenarios. All participants agreed that organ donation after the death of a citizen is a very noble act and were willing to share their views and opinions on this event (table 1).

Table 1

Demographic characteristics of participants

Data collection

A phenomenological approach was used and one-on-one in-depth interviews were conducted with the study participants. Through reviewing relevant literature6 14 and discussions in the group, and taking into account the actual situation in China, we preliminarily drew up the outline of the interviews.15 16 Subsequently, through pre-interviews, a modified interview outline was formed. The interviews included the following questions: (1) What are the common characteristics of families who refuse/support organ donation?; (2) What are the attributes of the deceased that influence organ donation?; (3) What do you think are the motivations for refusing/agreeing to organ donation?; (4) What measures, do you think, can be taken to alleviate the current extreme imbalance between organ supply and demand? These open-ended questions helped to probe into the participants’ true feelings. The number of participants was determined by the saturation criterion (when additional interviews add no additional information).17 The detailed interview guide with general and follow-up questions is shown in box 1.

Box 1

Questions used in the interview guide

Q1: What are the common characteristics of families who refuse/support organ donation?

  • How do you think these characteristics affect the final donation decision? Are there any donation cases that impress you?

  • What reasons do you think impel these families to have these characteristics?

Q2: What are the attributes of the deceased that influence organ donation?

  • How do you think the attributes of the deceased affect the donation results? What is the deeper reason behind this?

Q3: What do you think are the motivations for refusing/agreeing to organ donation?

  • What factors do you think will affect the motivation of refusing/agreeing to donate?

Q4: What measures, do you think, can be taken to alleviate the current extreme imbalance between organ supply and demand?

We informed the participants of the purpose and significance of the study before each interview. Those who were willing to participate signed an informed consent form. The time and place of the interview were arranged according to the convenience of each participant. Researchers audio-recorded the interview process, listened carefully to the participants’ statements, and noted changes in their emotions and movements during the interview. Each interview lasted between 30 and 50 min.

Data analysis

NVivo V.12 software was used to manage and analyse the data, which were empirically analysed using thematic analysis. We followed the previous studies18 and briefly mentioned the steps below: (a) two researchers (XY, ZY) iteratively read the data to capture the overall sense of the data; (b) XY and ZY annotated the data for important ideas and concepts and developed open codes to form initial codes; (c) the initial codes were categorised into themes and subthemes; (d) draft themes and subthemes were discussed and analysed by the research team under the guidance of senior qualitative research experts. The final themes, subthemes and representative quotes were determined with the consent of all the participants. The researchers’ credentials are MS and their occupation at the time of the study is hospital pharmacists. They have participated in theoretical training and have experience in qualitative research.

In the ecosystem theory model, the changing environment in which people live and interact is referred to as a behavioural system. The system is divided into four levels from small to large: microsystem, mesosystem, exosystem and macrosystem.19 It emphasises that the development of an individual is related to the environment in which they live and that the individual and the environment interact to determine the outcome of development. At the stage of analysing the data, the research team extracted information on the factors affecting the willingness to donate organs at various levels, including the individual, family, surrounding environment, social opinion and so on, which were diverse and multifaceted, fitting with different levels in Bronfenbrenner’s socioecological system theory.20 Therefore, a theoretical model of the factors influencing organ donation was constructed accordingly.

The data were reported under the guidance of the Consolidated Criteria for Reporting Qualitative Research inventory (shown as online supplemental material).

Trustworthiness

As described in our previous study,21 our team has taken the following measures to ensure credibility: (a) all research members had finished several qualitative studies with rich experience; (b) the main researchers maintained close contact with experts in methodology to continuously address difficulties during the study; (c) after data analysis, the findings were confirmed by the participants to check for consistency and (d) the study was conducted strictly according to operational procedures of qualitative study. The personal attributes of the researchers had little or no impact on the study.

Patient and public involvement

None.

Results

Our analysis yielded four first-level themes regarding factors influencing organ donation: the deceased’s attributes, the immediate family of the deceased, surrounding people and the environment, and the social dimension (figure 1). Furthermore, we identified four solution strategies, including increasing multilevel advocacy, providing relevant policy support, increasing other forms of supply and reducing demand (table 2).

Table 2

Strategies to alleviate the organ shortage

Figure 1

Influencing factors model of organ donation. ICU, intensive care unit.

Influence of the attributes of the deceased

Gender and age of the deceased

During the interviews, the participants stated that the gender and age of the deceased had a significant influence on organ donation. In terms of gender, the interviewees believed that deceased males were more likely to achieve donation than deceased females.

1: In Chinese traditional culture, men are more inclined to take on social responsibilities, which is more acceptable to the donor’s family, whereas women are more inclined to take on family responsibilities, caring for family and children. The secular view believes that organ donation is difficult for women to undertake.

3: The organ donors are predominantly male, with approximately 75 percent of the donors being men. Women donors, however, are less commonly encountered. Because women are involved in two families—their own and their in-laws, communication can sometimes be difficult and so, fewer agree to donate.

Regarding age, they stated that donation is higher among infants and toddlers.

8: It’s easier for families with newborns to donate. It’s not that there’s no emotion, but that it’s probably relatively less emotionally stressful.

11: With children, generally, parents of preschoolers are a little more receptive when it comes to talking about organ donation. Parents of children who are at a late school age may be a little less accepting of the idea. The length of parenting time may be a factor in this regard.

Expressing willingness to donate before death

The registration system for expressing willingness to donate organs after their death is not well established in China,22 which may result in organ coordinators not being able to check whether the deceased had expressed willingness to donate organs after their death. However, a majority of respondents said most families would respect the deceased’s wishes if they were aware of their intent to donate organs after death.

5: The deceased person’s wishes when they were alive can largely influence the outcome of donation.

10: If it is the patient’s own will, then usually, families agree; that is, if I wanted to donate my organs after my death, and my parents and spouse know about it, then there will be very little resistance at that point.

Appropriate length of ICU treatment

The pace at which the condition of the deceased improves after admission and the duration of life-saving treatment can also impact the final donation outcome.

1: In many emergencies, the family doesn’t necessarily accept this reality for the first few days. But if the patient is in the ICU for a slightly longer treatment period, then there is a higher probability of consent for organ donation because there is enough time for the family to accept this.

11: In case of some car accident, the family is unable to accept the idea of organ donation, because the patient may not have too much time to survive. Families of deceased individuals who pass away suddenly are more resistant to organ donation, because the time left for him/her/them to accept is too short.

However, some interviewees mentioned that a long period of ICU treatment is not always conducive to the deceased’s family making the decision to donate organs.

13: In patients with particularly long ICU treatment time, often, the family is determined to save the patient, therefore it is difficult to donate.

Occupation before death

To some extent, the deceased’s occupation during their lifetime may have an impact on the outcome of the donation decision.

12: I came across a case where the young man was a military police officer. Maybe because of his/her/their professional image of a military police officer or because of the influence of the unit, it was easy to communicate with the family and get them to agree to organ donation.

13: We have previously come across doctors, teachers, soldiers, armed police officers; the probability of donation will be relatively higher for people in these professions.

The influence of immediate family members

Immediate family members usually include the deceased’s spouse, parents and adult children. Immediate family members’ factors such as education and experience often have a direct impact on the decision to donate organs. This aspect was mentioned several times by different interviewees.

Education and personal experience of immediate family members

The participants mentioned that the education and personal experience of immediate family members can have a direct impact on the outcome of organ donation.

2: This kind of thing requires a certain amount of knowledge and literacy. If you don’t have it, it’s very difficult to take the initiative and get this done.

5: I think maybe families who have been to big cities and worked in such places will be more accepting of organ donation. The key is having experience; if they have such experiences or awareness, their level of understanding will be better.

Communication and acceptance of immediate family members

Several interviewees indicated that the communication and acceptance of immediate family members are crucial for organ donation.

1: For organ donation, the family’s perception, including the strength of communication and ability to accept information, is very important.

3: Young people are easier to communicate with, but older people are very difficult. So, within a family, the children of the deceased may agree first, but it may be difficult for them to convince the parents of the deceased person.

Influence of surrounding people and the environment

Influence of the dominant person in the extended family

In Chinese society, family constitutes the union of people and their inter-relationships, and it is one of the most fundamental ways of understanding the existence of human society.23 In China, it is common for small families to merge to form a large family, also known as a clan. Several interviewees mentioned the significant impact the dominant member of the extended family exerts on the outcome of organ donation.

1: It is important to have a sensible elder in the family.

3: In the organ donor family, it is important to have a person who is dominant and others who are dependent on him/her/them, as this main person expresses his/her/their will.

Influence of the environment and surrounding people

During the interviews, it was found that the influence of surrounding people and the environment is important for organ donation. The influence of surrounding people comes primarily from collateral relatives. Although China currently requires consent only from immediate family members for organ donation, several interviewees indicated that collateral relatives play a critical role in the overall donation process.

9: Although it is said that only the immediate family’s consent is required, many collateral relatives may interfere with organ donation decisions, which lead to immediate relatives’s decision out of this final result may not be his/her/their idea.

14: Collateral family members often have the power of veto, because once they disagree, it feels that the disapproval is more moral and in line with moral philosophy. This directly influences the final decision of the immediate family.

The participants also emphasised environmental factors, which referred to the family atmosphere during the deceased’s lifetime, family structure, and the perception and cultural perspective of the family community regarding organ donation.

1: In some rural areas, the donor’s family worries that if this is known by their village, something negative will be said to them. They worry that people will look at them differently.

2: Mainly, a stable family environment is more conducive to organ donation.

14: Families with simple relationships are more likely to agree to donate, and this is just one of the factors; additionally, a harmonious family atmosphere is favorable to promote organ donation.

Influence of social factors

Religious beliefs

Not all Chinese citizens have religious beliefs.24 However, during the interviews, respondents indicated that families with religious beliefs were more supportive of organ donation.

1: Being religious generally means accumulating virtue and doing good deeds. They may be less concerned about the physical aspect. Such religious families may be more receptive to organ donation.

Methods of burial

Burial methods have a relatively large influence on organ donation in China. Respondents said that families who choose burial would not accept organ donation, while families who choose cremation may be more receptive to the idea.

6: South of Huaihe River is burial, north of Huaihe River can be either burial or cremation. If it is a burial, it may be difficult to agree for a donation, and if it is a cremation, they may accept it.

Customs and culture

The influence of customs and culture on organ donation was also a prominent factor in the interviews. In China, traditional culture believes that the incomplete body of the deceased will affect their reincarnation, which invariably pressures people not to donate organs.

1: There is this belief in China, of leaving the body intact. It is believed that a deceased person needs to leave the body intact. Organ donation requires the removal of an organ to give to a patient whose life is in danger, thereby making the donor’s body incomplete. So, our traditional Chinese culture will have some influence on donation.

3: Families often believe that for the deceased, the body itself is already injured, and they don’t want to donate organs because it involves opening up the body, and the skin has to be broken. They don’t want the deceased to be injured again.

Strategies for alleviating the shortage in organ donation

Regarding strategies for improving the organ shortage, we compiled the contents of the interviews. Four primary themes and nine subthemes were obtained: multilevel publicity (inclusion in teaching materials, filming promotional videos, spiritual infiltration, participation of doctors in ICUs), relevant policy support (tilting policies for donors, learning from the experiences of other countries), increasing other forms of supply (carrying out live transplantation, developing allogeneic transplants) and reducing organ demand (early intervention for related diseases to avoid end-stage development) (table 2).

Discussion

To our knowledge, this study is the first in mainland China to explore the factors influencing organ donation after the death of Chinese citizens from the perspective of organ coordinators and ICU physicians. The results of the present study showed that these factors are multifaceted and complex, with both individual and peripheral environmental influences. We discussed the findings based on Bronfenbrenner’s socioecological system model and formed the influencing factors of organ donation model. Strategies for improving the shortage of organ donation are identified.

The first theme identified in our study was the impact of the attributes of the deceased. Interviewees revealed that deceased males were more likely to donate organs than females, which may be related to the traditional Chinese social belief that men should be more dedicated to society, and women to family and children,25 which has not been reported previously. The interviews also showed that younger age, an appropriate length of stay at the ICU and prior expressed willingness to donate organs increased organ donation. A study by Kotsopoulos et al showed that the organ donation request consent rates were not influenced by the duration of the ICU stay,26 which is different from our results. In the USA, if an individual has clearly expressed a desire to donate organs during their lifetime, then the views of their family may not even be considered in organ donation23; this also differs from our findings. Additionally, professions that have high social honour in society (eg, military, armed forces, teachers, doctors) are another influential factor that promotes donation.

The second influence was that of the immediate family members of the deceased. The results of our study showed that education and personal experience of immediate family members influenced the outcome of organ donation, similar to the findings of the Dutch scholar Merz et al, who concluded that higher education levels, higher prosocial values and prosocial behaviour (ie, volunteer work), and awareness of needs were significantly associated with registration as an organ donor.27 In addition, the interviews showed that communication and receptivity of immediate family members also influenced the final donation outcome.

The third influence is that of surrounding people and the environment, mainly, the influence of the dominant person in the extended family, surrounding people and the environment. In China, the extended family is a very important social unit,23 and the dominant person in it has considerable authority and directly determines the outcome of more significant events such as organ donation. In some villages and towns, people live in clusters in a closed environment and lack communication with the outside world. People in these areas often resist organ donation for fear of the non-inclusiveness of the people or the surrounding environment.

Another theme is the influence of social aspects, including religious beliefs, customs, culture and burial methods. The influence of religious beliefs varies depending on the region and nature of the religion, as mentioned in the study by Soylu et al. Of the respondents, 50.7% felt that a religious perspective can provide positive information about organ donation.28 In contrast to our findings, Laidouni et al suggest that religious beliefs hurt organ donation and that there is a need to increase cooperation between health authorities and religious leaders to increase public willingness to donate.29 In terms of customs and culture, our research reported findings similar to another study conducted at Xiangya Hospital in China by Luo et al.6 It is traditionally believed that leaving a deceased person’s body not intact is disrespectful or somewhat affects their reincarnation. Such beliefs make some families have a deep sense of regret or powerlessness toward the deceased, even if they agree to organ donation. The interviewees also revealed that the burial method impacts organ donation. In burial areas, families believe the body of the deceased must remain intact. By contrast, in areas where cremation is predominant, citizens are more receptive and able to make decisions regarding organ donation. The factor may be more prominent in China.

The above four dimensions constitute a theoretical model of the factors influencing organ donation (figure 1), with the innermost layer of the model being the influencing factors of the deceased person and the outermost layer being the influencing factors of the environment. Each layer is relatively independent, but they all interact with each other.

Meanwhile, we conducted interviews with respondents on how the current situation of organ shortage can be improved. In this part of the interview, the physicians seemed to give a more diverse range of answers compared with the coordinators, including suggestions such as reducing organ donation requirements. We compiled the results, reaching nine secondary themes (table 2). Five of these are consistent with the 12 action themes for improving organ donation and transplantation in the European Union region, published by Vanholder et al,30 including optimising the role of intensive care professionals, increasing living donation, raising public awareness, adopting policy preferences for donors and learning from the experiences of other countries. However, countermeasures, such as reducing organ demand and spiritual penetration, were not mentioned in Vanholder et al’s study.

This study is the first to use Bronfenbrenner’s socioecological system model in mainland China to comprehensively explore the factors affecting organ donation and analyse countermeasures for the current situation. However, our study has some important limitations. First, the interviewees we chose in the course of the study were relatively centralised, and most of the organ donors we contacted were Han Chinese, which did not cover the situation of organ donation among China’s ethnic minorities. Second, the influence of religious beliefs has not been fully explored due to the geographical limitations of the participants; in fact, the factors that influence organ donation are a very macro topic, and expanding the geographical distribution of the respondents may reveal more interesting findings. Third, in conducting this study and writing the manuscript, we used two languages; although we did our best to improve the validity of the language and reduce the risk of losing its meaning, there is still a possibility of ambiguity in the process of language shift.

Conclusion

This study uncovered factors influencing organ donation after the death of a citizen in China, from the perspective of front-line workers. The influencing factors include the donor’s attributes, family, surrounding people, environment and social level. We propose a theoretical model based on the socioecological system theory, which provides a theoretical reference for future relevant research.

Data availability statement

Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplemental information.

Ethics statements

Patient consent for publication

Ethics approval

The present qualitative study was approved by the Ethics Committee at the First Affiliated Hospital of Zhengzhou University (no. 2022-KY-0735). Written informed consent forms were signed by all the participants. Considering potential ethical issues and conflicts of interest, special attention was given to follow the individual wishes of the participants and protect their privacy during the design of our programme and implementation of the interviews.

References

Supplementary materials

  • Supplementary Data

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Footnotes

  • Contributors XY participated in the writing of the article, performing the research and data analysis. CQC participated in the research process. KG participated in the research process. XJ, FYS, XJL, WZ and SD participated in data analysis. XZ participated in the research design. ZY participated in the research design and the research process. WG participated in the research design. ZY is the guarantor responsible for the overall content.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.