Tough choices: the experience of family members of critically ill patients participating in ECMO treatment decision-making: a descriptive qualitative study

Abstract

Background

ECMO treatment for critically ill patients mostly requires family members to make surrogate decisions. However, the process and experience of family members’ participation in decision making have not been well described.

Purpose

To explore the experience of family members of critically ill patients who were asked to consent to ECMO treatment and to gain insight into the factors that promote and hinder their decision-making.

Methods

A descriptive qualitative study. Data were collected using a semi-structured interview method and analysed using traditional content analysis approaches. The cohort included nineteen family members of critically ill ICU patients from a general hospital in China.

Results

Eleven family members consented to ECMO treatment, and 8 refused. 4 themes and 10 subthemes emerged: (1) tough choices: the dilemma in the emergency situation, the guilt and remorse after giving up; (2) rationalisation of decision-making: ethics and morality guide decision-making, expected efficacy influences decision making, and past experience promotes decision making; (3) decision-making methods: independent decision-making, group decision-making, decision making based on patient preferences; (4) influencing factors of decision making: information and communication, social support.

Conclusion

The findings provide insights and a basis for promoting efficient ECMO decision-making in clinical practice. It may be difficult to improve the time it takes to make the decision without sacrificing the quality of the decision. Healthcare professionals should provide timely emotional support, informational support, and comprehensive social support to assist them in making efficient decisions while respecting the treatment preferences of the decision-makers.

Background

Extracorporeal membrane oxygenation (ECMO) is a long-term life support technology that partially or completely replaces cardiopulmonary function [1] by using an external pump and oxygenator to sustain cardiopulmonary function and life. ECMO has been widely used in the management of acute respiratory distress syndrome (ARDS), cardiopulmonary resuscitation, the perioperative transition of heart transplantation, acute poisoning, organ donation and other critical care needs. As such, it has emerged as an important life-preserving tool for critically ill patients [2, 3]. According to statistics from ELSO, among the 18,260 patients who received ECMO globally in 2020, 54% survived to discharge or transfer [4]. However, ECMO technology itself can lead to complications such as bleeding(50.2%) [5], infection(8.8-64%) [6], thromboembolism(20.2%) [7], acute kidney injury(38.4%) [8] and neurological sequelae (7.1-15.1%) [9]. The timing of ECMO establishment is a key prognostic factor in the course of treatment, especially in patients with cardiac arrest, where prompt therapy that reinstates adequate perfusion is critical to reducing serious complications in critical organs [10]. The critical time of ECMO pipeline establishment is 48 min, and if the pipeline establishment is completed within this time period, a better prognosis can be obtained [11]. Lee et al. [12] report that the 30-day survival rate for early initiation of ECMO (0.6 h) is 13.2% higher than for late initiation (5.1 h).

Given the importance of instituting prompt treatment, reducing the decision-making time for ECMO therapy is critical to optimising organ reperfusion and subsequent clinical outcomes [11–12]. Because most critically ill patients are sedated or comatose, their family members act as proxy decision-makers. This usually involves the spouse, adult children or other legally authorised individuals [13, 14]. Studies have shown that when critically ill patients are incapacitated, their ability to make autonomous decisions is limited and other individuals are put in charge of these decisions in almost 70% of such cases [15]. However, most family members of critically ill patients are asked to make ECMO treatment decisions under extreme stress and to weigh the risks and benefits of a complex clinical picture on a background of little relevant knowledge. In addition, due to the high cost of ECMO treatment, patients and families in China are required to self-pay. As such, most family members will experience difficulties and conflicts in their decision-making which may occur against a background of depression, anxiety, post-traumatic stress syndrome and other problems that affect their cognitive judgment and decision-making efficiency, resulting in greater distress and treatment delays [16, 17]. Therefore, it is critical to gain a comprehensive understanding of how critically ill patients’ families experience their participation in the ECMO decision-making process and identify the relevant factors that affect their decision-making. These data can help us improve the process of obtaining informed consent, thereby facilitating the rapid implementation of ECMO and improving patient outcomes.

Most studies on family participation in decision-making have generally adopted a qualitative research approach to explore important treatment decision-making events, such as those surrounding end-of-life issues, from the perspective of family members [18, 19]. Few such studies have been conducted in China where most have used quantitative methods. For instance, a Chinese study conducted a cross-sectional survey of 110 family members who participated in the preoperative decision-making process for aortic dissections, and reported that low monthly family income, alienated emotional connection with patients and a low educational level were the important factors leading to decision-making difficulties [20]. However, the study did not capture the entire subjective experiences of the family members. Without these deeper insights, our understanding of the experience of family members participating in treatment decision-making remains limited.

China is the most populous East Asian country [21]. Han Chinese make up approximately 92% of the population, with the remainder composed of over 50 additional ethnic minorities [22]. Given the potential effects of cultural background and lifestyle factors and the lack of existing data, it is not known how well existing studies reflect the decision-making experience of family members of critically ill patients in China. It is important to note that ECMO decisions markedly differ from other clinical and end-of-life decisions. These are high-pressure decisions that occur in highly compressed time frames and can lead to unique psychological experiences and effects on the involved individuals. These effects have not been adequately explored in previous studies. This could hinder access to informed consent and the rapid initiation of ECMO treatment.

To address this, we conducted a descriptive research study to explore the experience of participating in ECMO treatment decision-making from the perspective of the family of critically ill patients and to gain insight into the factors that influence their decision-making.

Methods

A descriptive qualitative study based on a conventional content analysis technique was employed to understand the feelings, decision facilitation and impediments of family members of critically ill patients in the ECMO treatment decision-making process. Descriptive qualitative research is a research method that follows the philosophical basis of natural inquiry, aiming to directly and richly describe experiences, events, or processes in popular language, and to present the results more closely to the data itself [23,24,25]. When the question to be studied is how people react to an event, what they think, what promotes or hinders it, descriptive studies are best chosen.

Research team

The research team consisted of seven researchers with experience in critical care or qualitative research. The lead researcher (XY) is the head nurse of the intensive care unit, with 21 years of clinical nursing experience. Data collection and analysis were conducted by four researchers (XY, WD, YL, QZ) trained in qualitative research methods, including the lead researcher, two of whom conducted other projects using these methods. They were supported by three additional researchers (AT, LN, XZ) with extensive experience in qualitative research theory and methodology.

Study participants

The study was conducted in a tertiary general teaching hospital in southern China between November 2021 and June 2022. The study site was an intensive care unit with 44 beds for critically ill patients, where approximately 30 ECMO patients are treated annually. Purposive sampling with maximum variation was used to select participants of different ages, genders, educational levels, religious beliefs and economic levels. All participants fulfilled the following inclusion criteria: (a) family members who were authorised to make ECMO treatment decisions for critically ill patients based on the Chinese Civil Legal Code prescription of surrogate decision makers (the prescribed order of decision-making is: spouse, parents, adult children and other close relatives) and (b) those who consented to participate in the study by signing informed consent. Exclusion criteria included family members with a documented diagnosis of severe psychiatric disease or difficulty communicating in Chinese. When family members were asked to make ECMO decisions, an invitation to participate in our study was provided in person by the lead researcher, who is one of the head nurses in the ICU. The purpose of the study, method of data collection, researchers’ contact details and a written consent form were provided, and then potential participants were asked about their willingness to participate. Twenty-five family members of the patients were invited to participate in our study, and 19 agreed to participate and signed an informed consent form.

Data collection

Data were collected by the lead researcher through semi-structured interviews, and the interview outlines (Table 1) were developed based on the study aims, literature review, and consultation with the members of the research group. We conducted pre-interviews with two respondents and revised the interview outlines further based on the results. The interview included the participant’s views on ECMO, factors considered, psychological responses to the need for decision-making, feelings about the original decision and how healthcare professionals could assist in the decision-making process. The interview was supplemented by interview notes and reflection logs to better understand the experience of and the influencing factors behind the participants’ decision-making. The timing of the interview depended on whether ECMO was instituted or not. Individuals who refused ECMO were interviewed immediately after their decision (before discharge). Individuals who approved ECMO treatment were interviewed on days 3–5 of the patient’s ICU admission to avoid the initial period of stress and establish a trusting relationship with the investigators, which facilitated the family’s willingness to participate [26]. 11 ECMO-consenting participants were interviewed on days 3–5 after treatment and 8 ECMO refusing participants were interviewed immediately after their decision.

Table 1 The interview guide

All interviews were audio-recorded and transcribed verbatim and combined with any non-verbal information that was recorded during the interviews. The participants private information in the transcribed text has been de-identified. To ensure the authenticity and integrity of the data, the transcriptions were conducted by two researchers, typically within 24 h.

Data analysis

Data were analysed using the conventional content analysis method, a tool to systematically reduce qualitative data such as written words, spoken language or pictures to a small number of repeatable content categories according to certain rules [27]. Qualitative content analysis describes and interprets texts by encoding and categorising them into themes or related concepts [28]. The specific steps include [29]: (1) the researcher immersed themselves in the data, transcoded it immediately after the interview and compiled it into text materials, then obtained an overall sense of the material by repeatedly listening to the recording, reviewing the interview notes and reflecting on the text; (2) after obtaining a sense of the overall text material, they marked important ideas and concepts, marked the text sentence by sentence and carried out open coding; (3) the process of categorising similar and related codes into themes and subtopics was repeated and (4), after initially obtaining the theme and sub-theme, two researchers first compared it with each text material, discussed it with the whole investigation team, constantly challenged the internal logic between the themes and comprehensively summarised it again to form the final theme and identify the corresponding excerpt examples from the data. When no new topics emerged from the analysis of interview data, the data was deemed to have reached saturation and subsequent data collection ceased. We acknowledged our preconceived ideas on the study topic and adopted an open attitude approach to regularly discuss and modify the coding rationale and thematic alignment, This helped us to identify the researcher’s own bias and preset position and reduce research bias. In addition, the data analysis results were returned to the interviewees for verification, to confirm the accuracy of the results, and to ask if there was any supplement.

Ethical considerations

The study was approved by the local ethics review committee (IIT-20211117-0114-01, November 2021). Before the interviews commenced, all participants received written information about the study. Signed informed consent was received from all participants. The informed consent form stated that the interviews were audio-recorded, participants’ profiles were anonymised after data collection and participants had the right to withdraw from the study at any time before data publication.

Results

The study sample consisted of 19 family members of 19 critically ill patients, including 5 women and 14 men, with a mean age of 42.9 years (range 30–55). 11 family members consented to ECMO treatment and 8 family members refused. The average interview length was 32 ± 3.75 min. Other demographic and clinical characteristics are shown in Table 2.

Table 2 Characteristics of the participants (N = 19)

In this section, the key findings are outlined and structured into the four main themes identified which included: (1) tough choices; (2) rationalisation of decision-making; (3) decision-making methods; (4) influencing factors of decision making.

Theme 1: tough choices

The dilemma in the emergency situation

Conditions necessitating ECMO treatment typically have a rapid onset and progress rapidly, limiting decision-making time. In this situation, the decision-maker is faced with having to make rapid life-and-death decisions, resulting in a poor capacity to think through the relevant facts and concepts, making it difficult for them to respond promptly.

“It was a very sudden situation, and I was very nervous at the time, and I didn’t know what to do.” (P2).

“I was actually very nervous. My mind went blank. I didn’t know what to think, what to do to make decisions.” (P15).

The benefits and risks of ECMO treatment, along with its high costs, can place family members in a difficult and conflicting situation. Decision-makers are worried that the financial, psychological and physical price paid in executing the treatment may not deliver adequate treatment effects and the family may finally run out of resources.

“I still want to save him, but considering the success rate is too low, and he is in poor condition, I think we may have spent a lot in the end, and may not have a good result, so I am very confused.” (P9).

Some family members struggle to make decisions because they are worried about the pain that ECMO treatment will bring to patients.

“I thought my dad was going to suffer, and I was torn about whether to go on ECMO.” (P19).

The guilt and remorse after giving up

Abandoning ECMO treatment often means abandoning the last chance of survival. Family members who choose to abandon treatment due to financial burden react to this decision with guilt and regret because of their lack of effort. We did not find this emotional response in the family members who refused ECMO treatment due to considerations of prognosis.

“I feel very guilty, because sometimes I think there is such a way to save him, but I did not do it (due to financial burden); I actually feel quite guilty.” (P13).

“This is a very significant decision, and it feels quite heavy. I feel very guilty and useless. If I could earn more money, there would be a lot more hope for my mother’s treatment.” (P17).

Theme 2: rationalisation of decision-making

Ethics and morals guide decision-making

Filial piety (an obligation of children to their parents) is critical in Chinese culture and markedly influence family decision-making. When faced with difficult choices, the family may be innately inclined to prevent the patient’s suffering but their cultural, ethical and moral standards direct most families to ultimately preserve life at all costs. Even when presented with a low chance of successful treatment and a high risk of complications, they tended to opt for the high-risk treatment strategy.

“We don’t want her to suffer anymore, but she’s my mother, my parents are very close, our family is very close. If I don’t do it, my mother’s life will be lost, and it will be very difficult to accept psychologically.” (P17).

“No matter what, if there’s a chance, we should give it a shot. After all, he’s my dad, ‘a hundred kindness filial piety first’, How can I just give up like that?” (P2).

Expected efficacy influences decision-making

When faced with treatment decisions, family members of critically ill patients often take into account treatment success rates, complications and survival rates, as well as expectations about the future quality of life and whether basic living needs can be met. Families may decide to forgo ECMO if a poor outcome is expected.

“I also think about the effect of the treatment. If it’s bad for his quality of life, I don’t think it’s necessary.” (P19).

“I just want to know how much the survival rate of my loved one will increase after using ECMO. Since the doctor did not provide a specific figure, I have been hesitant.” (P15).

Past experience promotes decision-making

Some patients’ family members utilised experience from previous relevant decision-making scenarios. Positive decision-making experiences promoted pro-ECMO decision-making and strengthened confidence in the treatment.

“My first reaction was to think that ECMO should be used, because my father has been on it before, has had a successful treatment experience; we are fairly supportive regarding its effects.” (P11).

“My aunt was almost gone, but then she used ECMO, and the effect was truly miraculous. This has also strengthened my resolve to make this decision.” (P18).

Negative decision-making experiences may hinder family members from making decisions because they believe that ECMO offers little value for the treatment of patients and therefore they refuse ECMO.

“My uncle had the same problem as my husband. I was there at that time, and the doctor suggested he do ECMO. My uncle paid for it, but it still failed, so there was no way.” (P16).

Theme 3: decision-making methods

Independent decision-making

When faced with ECMO treatment decisions, some family members make completely independent judgments, often to reach rapid treatment decisions. However, these decision-makers also experience greater psychological pressure because they cannot share the responsibility. This scenario, however, appears to be relatively rare.

“Since I had no one else to discuss it with, it was especially urgent, and his life was in my hands, I could only agree with the doctor’s advice.” (P4).

Group decision-making

In most cases, family members are unable to make independent decisions and need to communicate with their elders or friends and relatives to seek additional input and opinions. Although this decision-making approach may lead to numerous conflicting opinions, causing hesitation and increasing the time required for decision-making, it also offers mutual support and strength among family members through the deliberation.

“This is a big issue that needs to be discussed. I still need to discuss it with my father, because my father may not be able to accept it. At times like this, we have to be there for each other.” (P17).

“When the doctor told me about the situation, I thought it was a big deal, so I hurried to my brother-in-law to discuss it with him, but we had different opinions, and we talked about it for hours…” (P18).

Decision-making based on patient preferences

In addition to independent and group decision-making, individual family members considered the patient’s wishes and preferences, which may be derived from the patient’s advance directives, and the family expressed a willingness to comply with the patient’s wishes, although the end result was deemed to be painful.

“My mother told me about this before, she didn’t want to be so painful when she finally left. She wanted to go in a dignified way, and asked us not to rescue her at that time (sobbing). As children, we really didn’t have the heart, but also very reluctant, but I still let her go, so it may be a relief for her.” (P3).

Theme 4: influencing factors of decision making

Information and communication

Because most participants lacked a substantial working knowledge of medicine and the healthcare professionals tended to communicate by using technical medical terms with a relatively urgent tone, most family members stated that the healthcare professionals did not adequately explain the severity of the condition and the necessity of ECMO treatment. This limited the communication efficacy between doctors and decision-makers, resulting in a high risk of conflicts that can delay timely treatment decisions.

“Sometimes the doctor may be in a hurry, and I was also in a hurry. My mother may indeed be in a serious condition. If the doctor provided more simple information, such as by drawing pictures, I might understand it more easily.” (P12).

“The doctor should explain the benefits of ECMO to us and explain it more clearly, otherwise we don’t know what it is and it is difficult to make decisions.” (P2).

Some family members reported that accurate and timely medical information and humane care from healthcare professionals reduced uncertainty in their decision-making process. Therefore, effective communication alleviated the confusion of family members and improved decision-making efficiency.

“The doctors also helped us analyse the pros and cons of the machine and gave us some constructive advice which helped decision-making because we really didn’t understand. They explained to us the functions and side effects of some related instruments.” (P15).

Social support

ECMO treatment is essentially a last-line therapy but attracts high treatment costs. Financial resources are a key factor to consider in the decision-making process. Medical insurance reimbursement for ECMO is limited in China, overwhelming family members with insufficient financial resources and causing some family members to abandon the therapy.

“I really want to let my sister receive ECMO treatment, but because your doctor told me that the first day will cost about 200,000 CNY (∼ 30,000 USD), I really can’t afford such a large amount of money… indeed there is a certain financial burden.” (P13).

The difficulties and helplessness experienced by some family members of critically ill patients are not readily shared with others and there may be no trusted individuals to consult as part of the decision-making process.

“I usually live with my mother, but now I have no one to talk to, including my husband. I really don’t know what to do.” (P12).

Adequate economic resources can alleviate family worries and facilitate efficient decision-making.

“Our family is financially sound, so we can afford to go to ECMO.” (P19).

In addition to financial support, medical support can help family members build trust in doctors, thereby facilitating medical decision-making.

“The doctor tried very hard to help us coordinate with the doctor in the MRI department. That is to say, we were in the worst situation and could not do it for 8 minutes, so they helped me coordinate and seize the time, so we accumulated our trust bit by bit.” (P5).

Discussion

In this study, our findings indicate that the various aspects of the ECMO treatment decision-making process are interdependent. Relevant psychological pressures experienced by the family members of critically ill patients largely stem from an analysis of the pros and cons in their decision-making within an urgent time frame. Psychological pressures due to time crunch also affect the ability of individuals to analyse relevant facts to determine the potential benefits and trade-offs of treatment decisions and interfere with their ability to accept new medical information, create rational judgments and engage in efficient decision-making. The decision-making method (independent decision-making, group decision-making, and decision-making based on the patient’s preferences) is an important internal factor affecting the formation of decision-making, among which the treatment willingness and preference of critically ill patients are easily ignored. In addition, a lack of relevant medical knowledge that has not been adequately bridged by healthcare professionals and low socioeconomic status with less access to relevant supports are both externally controllable factors that hinder high-quality decision-making by the families of critically ill patients. These variables can affect the final decision by influencing the psychological state of the decision-maker and impairing their analysis of the pros and cons. Therefore, the subjective, objective and internal and external factors of the decision-making process should be considered as a whole.

The current fingdings indicate that family members of critically ill patients face significant psychological pressures when participating in ECMO treatment decisions, impairing their ability to make high-quality decisions. This is consistent with the findings of Seaman [30]. Individuals involved in making decisions about critically ill patients experience high levels of long-term psychological distress. This can stem from uncertainty about the patient’s prognosis, uncertainty about the patient’s preferences regarding treatment and informational inadequacy and overload [31]. In our study, most ECMO treatment decisions were required unexpectedly and without the possibility of preparation by family members, possibly because the patient’s condition was serious, complex and rapidly developing. Thus, family members involved in ECMO treatment decisions faced the combined problem of having little time to make high-risk and high-stakes decisions. In this state, the family’s ability to accept medical knowledge, formulate a rational judgment and efficiently generate a final decision is markedly impaired, reducing their ability to confidently reach a decision. Secondly, interview data show that contradiction and entanglement were additional psychological characteristics in our decision-maker cohort. Family members hope that ECMO will keep the patient alive and they strive for this outcome. However, high treatment costs, uncertain treatment results and a fear of suffering hinder family members from making timely treatment decisions. Family members who choose to abandon treatment due to financial burden react to this decision with guilt and regret because of their lack of effort. In contrast, family members who adhere to ECMO treatment tend not to regret their choice if the treatment fails: they maintain their decision despite the effort they put in regardless of whether they are short of money or not. Healthcare professionals in close contact with decision-makers should consciously act as “guides”, continuously assessing the psychological states of family members, implementing appropriate psychological care and support and helping guide their decision-making process.

Our findings show that decision-makers consider the role of ECMO, its success rate, survival advantages, treatment costs and complications and expected future quality of life and self-care ability in making the most appropriate decision. In short, it involves an analytical process of balancing the understood pros and cons of the therapy. It is worth noting that many more displayed a high level of risk acceptance in pursuing active treatment at all costs, even though they understood that ECMO treatment is associated with significant risks. This means that decision making appears to be more strongly guided by cultural beliefs and filial piety, as well as usability bias (past experiences with both negative and positive outcomes of ECMO with other family members), rather than a rational analysis of the pros and cons of treatment. This seems to be consistent with Simon’s theory of bounded rational decision-making developed in the 1950s [32]. The theory suggests that in a high information load context, as found in ECMO decision-making, individuals do not reach a rational decision by obtaining, synthesising, and processing all relevant information. Instead, bound by their experiential and informational resources, they utilise the information that is available to them to reach a semi-rational decision that is adequate even though it may ultimately be suboptimal. It is also important to recognise that decision-makers are “social persons” and respond to social factors. The current cohort observed obedience to the traditional Chinese concept of filial piety and the principle of not abandoning life. These considerations factor into the decision-making process, altering the pros and cons analysis, and potentially further reducing their ability to make a completely rational decision. Ultimately, these individuals seek to make a decision that is deemed to be “satisfactory” and will allow a certain degree of psychological comfort and inner peace. Therefore, it may be difficult to improve the time it takes to make the decision without sacrificing the quality of the decision.

The decision-making methods is an important internal factor that affects the process of ECMO decision-making. Our findings identify two methods: independent decision-making and group decision-making. Of the two, group decision-making was more common. One reason for its greater application is that these clinical decisions concern not only the patient’s life and prognosis but also speak to the interests and psychological state of the whole family. The individual is placed within the context of their home in Chinese culture and the family relationship is seen as primary [33]. As such, most family members seek out decision-making support and opinions from their family. In addition, individuals may seek the family to shoulder the burden of decision-making and thus “diffuse responsibility“ [34] to the group. Although independent decision-making avoids the occurrence of decision-making disputes and reduces decision-making time it is likely to be more subject to the psychological characteristics and responses of a single individual [35]. It is worth noting that most of our decision-makers were unaware of the patient’s treatment preferences and values as the subject when facing treatment decisions. Only 3 family members in this study considered the patient’s treatment willingness and religious beliefs and the remaining 16 failed to mention it. This is consistent with the findings of Scheunemann et al. [36], who showed that family members of critically ill ICU patients did not discuss patient preferences for treatment decisions during home meetings. Generally, studies have reported a low consistency between family and patient decision-making preferences [13]. Because traditional Chinese concepts of morality and filial piety motivate decision-makers to life preservation at any cost, this cultural context makes it difficult for high-quality treatment decisions to be solely based on the patient’s wishes and preferences, which may run contrary to these principles [37]. Studies have shown [38] the expression of clear treatment preferences by conscious patients is a factor that influences family members’ clinical decision-making. This also suggests that healthcare professionals should comprehensively consider and attempt to obtain the treatment wishes and values of critically ill patients to assist the process of decision-making by the patient’s family. This can take the form of Advance Care Planning (ACP) or advance treatment directives as has been implemented in many countries. Owen et al. [39] reported that ACP provides patients with a better quality of life because 70% of patients express a preference for comfort rather than purely life-prolonging measures.

The current findings show that externally controllable factors: information and communication, social support, which indirectly affects the psychological state and the pros and cons analysis process of the decision-makers. Most healthcare professionals generally believe that they have provided adequate relevant medical information while communicating with patients or family members [40]. However, through our interviews, most family members did not believe that they had received sufficient medical information. This imbalance may stem from the limited time available for doctor-patient communication and a lack of background medical knowledge of family members. Lincoln et al. [41] also identified effective, timely and detailed communication between healthcare professionals and family members as particularly important in the treatment decision-making process for critically ill patients. Therefore, healthcare professionals should learn efficient communication models to help them quickly bridge the gap between their insights and the knowledge needs of family members. In addition, medical institutions should identify means of disseminating relevant knowledge of ECMO through appropriate channels to provide the public with a preliminary understanding of the treatment to assist future decision-making. Interview data showed that most family members were caught in an economic-moral dilemma of abandoning versus adhering to treatment due to the high costs associated with prolonged ECMO treatment. Such considerations hindered the decision-makers in their task and may have promoted the abandonment of treatment. Although China’s medical insurance coverage rate has reached 96% [42], variable levels of protection are offered for critically ill patients. As such, the availability of funding resources continues to affect the decision-making process of family members. At present, most patients’ family members lack a detailed understanding of the relevant special policies and social assistance measures introduced by the state, such as poverty alleviation projects and internet public fundraising projects and would benefit from professional assistance to provide relevant consultation and help.

Strengths and limitations

The current study gives a qualitative view of the experience of critically ill patients’ family members and perceptions of ECMO Treatment Decision-Making within a Chinese hospital. However, we recognise some limitations. First, this study was performed in a single ICU within a general hospital in the South of China, potentially reducing the transferability of our findings to other populations. Second, for the family members who refused ECMO treatment, the interviews were conducted immediately and interviewed data collected at this time may be affected by the complicated emotions of the family members and should be viewed with caution. Third, while the study reached theme saturation, this point is relative and the study results may have been different had additional data been obtained over time.

Conclusions

In conclusion, we used a descriptive qualitative approach to gain a deep understanding of the experiences of family members of critically ill patients in making ECMO treatment decisions and the factors that may influence decision-making efficiency. The findings provide insights and a basis for promoting efficient ECMO decision-making in clinical practice. Family members of critically ill patients must make ECMO treatment decisions while under significant psychological stress and external influences, which is a very challenging process. It may be difficult to improve the time it takes to make the decision without sacrificing the quality of the decision. Healthcare professionals should provide timely emotional support, informational support, and comprehensive social support to assist them in making efficient decisions while respecting the treatment preferences of the decision-makers.