End-of-life decision-making in the ICU:A Qualitative Study on Family Members of End-stage Patients Experience

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Because many patients lack decision-making capacity, family members are often required to participate in complex end-of-life decision-making under conditions of emotional stress and uncertainty. Understanding family members’ experiences and needs is essential for improving clinical decision support in ICU settings. Methods A qualitative study was conducted using semi-structured interviews with 10 family members of end-stage ICU patients who experienced difficulties in end-of-life decision-making. Participants were recruited using purposive sampling. Interview data were audio-recorded, transcribed verbatim, and analyzed usingColaizzi’s seven-step method. Results 4 themes and 12 sub-themes were identified: (1) decision-making experiences (hesitation, emotional pain and distress, acceptance of reality); (2) decision-making status (decision-making dilemmas, conflict between quality and length of life, and challenges in understanding and communicating the patient’s condition); (3) influencing factors (patient-related, family-related, sociocultural and medical factors); (4) decision-making needs (information needs and decision support needs). Family members reported substantial emotional distress and uncertainty throughout the decision-making process. Conclusions Family members of end-stage ICU patients experience complex psychological and informational challenges during end-of-life decision-making. Limited decision-making capacity, insufficient information, and multiple contextual influences hinder effective participation in decision-making. Providing timely, structured communication and psychological support is essential to improve the quality of end-of-life decision-making in ICU settings. Trial registration Not applicable. Intensive Care Units End-stage Patients End-of-life Decision༛Qualitative Research Background With advances in critical care medicine, life-sustaining technologies have significantly prolonged the survival of critically ill patients, and it has become increasingly common for end-of-life patients to spend their final days in the intensive care unit (ICU)[ 1 – 3 ]. However, these patients often lose decisional capacity due to impaired consciousness, leaving family members to act as surrogate decision-makers[ 4 ]. Evidence suggests[ 5 – 8 ] that families, confronted with substantial time pressure and high levels of psychological stress, must rapidly weigh complex issues such as invasive interventions, prognostic uncertainty, and end-of-life decisions. This process frequently triggers negative emotions—including anxiety, helplessness, denial, and complicated grief—which in turn compromise their ability to process information and diminish the quality of decision-making. In clinical settings, limited communication time with ICU clinicians, fragmented information delivery, and a lack of structured, continuous decision-support pathways at the institutional level further intensify families’ cognitive burden and psychological distress. Understanding families’ decision-making experiences, needs, and influencing factors, as well as the perspectives of ICU healthcare professionals, is therefore crucial for developing systematic strategies to support decision-making.Although previous studies have examined the decision-making experiences of families involved in the care of critically ill patients[ 9 ], little attention has been given to the distinct group of families facing end-of-life decision-making specifically for ICU patients. Moreover, influenced by Confucian filial ethics, family collectivism, and a cultural tendency to avoid discussions about death[ 10 ], Chinese families often experience pronounced psychological conflict and sociocultural pressure during this process[ 11 ].Accordingly, this study employed a qualitative research approach to explore family members’ decision-making experiences, needs, influencing factors. The findings aim to inform strategies for optimizing clinical communication and constructing a structured decision-support framework, thereby promoting shared decision-making and enhancing the quality of end-of-life care. Participants and Methods Participants A purposive sampling strategy was employed to recruit eligible family members of end-of-life ICU patients and ICU healthcare professionals from four general ICUs of a tertiary hospital in Lanzhou, Gansu Province, between July and August 2024. Inclusion criteria for Participants: ①primary caregiver of the end-of-life ICU patient; ②experiencing difficulties in making end-of-life decisions;③possessing adequate communication and decision-making capacity;④voluntarily agreeing to participate and aged ≥ 18 years. Exclusion criterion :①failure to participate in the patient’s treatment process throughout hospitalization due to other reasons.General demographic and clinical characteristics are presented in Table 1 . This study was approved by the Ethics Committee of the School of Nursing, Lanzhou University (Approval No. LZUHLXY20230140). Table 1 Baseline Characteristics of Family Members of End-stage Patients Characteristics Total(n = 10) % Gender Male 6 60% female 4 40% Age, y Mean (range) 43.9(28 ~ 61) Education leve Elementary school 1 10% High school 5 50% University and above 4 40% Relationship with patients Couple 2 20% parent 2 20% offspring 5 50% Sibling 1 10% Length of stay in ICU (days) 7 3 30% Emergency admission to the hospital Yes 5 50% No 5 50% terminal decision life-support treatment, LST 4 40% forgo life- support treatment, DFLST 6 60% The Interview Guide The semi-structured interview guide was developed by the research team based on the Ottawa Decision Support Framework and relevant literature. The interview guide used in this study is provided as Supplementary File 1 . Data Collection A semi-structured interview approach was adopted to collect the data. All interviews were conducted in a quiet, private consultation room within the ICU and lasted approximately 20–40 minutes. Prior to each interview, the researchers reviewed the patient’s medical records to understand the disease status, length of hospitalization, and treatment history. The purpose of the study was explained to the attending physician and the patient’s family members, and written informed consent was obtained. During the interviews, audio recordings were made, and the interviewer carefully observed nonverbal cues such as facial expressions, tone, and vocal nuances. Before concluding the interview, the interviewer invited participants to provide additional information to ensure that their views were fully and accurately expressed. Data Analysis Within 24–48 hours after each interview, the audio recordings were transcribedverbatim into Word documents and archived. NVivo 11.0 software was used tomanage and organize the textual data. Data analysis followed Colaizzi’s seven-step method[ 12 ], which included:1.Familiarizing oneself with all interview data to gain an overall understanding;2.Reading the transcripts verbatim and extracting significant statements;3.Coding recurrent and meaningful statements;4.Reflecting upon and clustering the codes into categories;5.Describing the emergent themes in detail and supporting them with original quotations;6.Integrating similar viewpoints to generate core themes;7.Returning to participants, when necessary, to verify the findings and refine the themes and subthemes. Results After repeated review and thorough analysis of the interview data from the tenfamily members of end-of-life ICU patients, a total of four major themes and twelve subthemes were identified. Theme 1: Decision-Making Experiences Hesitation For families of ICU end-of-life patients, no available treatment is likely to achieve an ideal clinical outcome. Influenced by traditional Chinese cultural values—particularly the belief that “filial piety is the foremost of all virtues”—families often struggle to let go, and withdrawing life-sustaining treatment may be perceived as a failure of filial duty. Such cultural and emotional pressures placedecision-makers in a dilemma between continuing and discontinuing life-sustaining interventions. “I am truly torn. Deciding whether my mother lives or dies is unbearably difficult for me.” (F3) “I feel like I’m standing at a crossroads, unsure which path to take.” (F7) Emotional Pain and Distress The profound grief associated with the impending loss of a loved one is one of the most common emotional reactions during end-of-life decision-making. This distress is particularly intensified when younger patients are unexpectedly admitted to the ICU. Families often struggle to accept the reality of the situation,expressing overwhelming sadness and emotional suffering. “No matter the cost, I just want my wife to get better. But now the doctors say her chances are very slim. She has already undergone the stem cell transplant—we’ve done everything possible. What am I supposed to do?” (crying) “I just can’t bring myself to give up on her.”(F2) “He used to complain of headaches sometimes… I can’t even imagine what it would be like to lose him.” (choking up) (F6) “Seeing her in so much pain makes my heart ache as well.” (F10) Acceptance of Reality In the early stages of ICU admission, most family members hold an active and hopeful attitude toward treatment, unwilling to give up even when the prognosis is poor. However, as treatment progresses—with escalating medical expenses, prolonged exhaustion, and a lack of clinical improvement—some families begin to psychologically prepare themselves to accept the reality of the patient’scondition. “He has been here for three days this time. We’ll wait a few more days, and if there’s no improvement, we’ll take him home.” (F1) “I’m a rational person. I always think about the worst-case scenario first. If treatment is possible, we will try; if not, I just hope he can go home alive.” (F5) “At first, I couldn’t believe my son had this illness. But now, after more than ten days on your hospital’s most advanced machine (ECMO) without any improvement, and with such a severe lung infection… we’ve borrowed money from everyone we can. We just have to accept our fate.” (F9) Theme 2: Decision-Making Status Decision-making dilemma The condition of ICU patients can deteriorate rapidly, requiring families to make high-risk decisions within a limited timeframe, while treatment outcomes and prognosis remain highly uncertain. At the same time, families face considerable financial and emotional pressures. Some believe that healthcare professionals possess greater expertise and a more comprehensive understanding of the patient's condition, and they fear that their own involvement in decision-making may result in unfavorable outcomes for which they must bear responsibility. These factors collectively place families in a profound decision-making dilemma. “Although I also have a medical background, I rarely encounter critically ill patients and do not understand much about them. You see such cases more often. I just want to know whether my father can wake up. Today the need for intubation was urgent—the doctor suddenly called to say his oxygenation was poor and he needed intubation. How long will the intubation last? I even asked my colleague—his relative was in your ICU a while ago and eventually went home after giving up. But the situations are not the same.” (F1) “Every decision has two sides. If there is a chance of recovery, I would still want to treat. If not, I want the elder to suffer less. But I don’t know whether he can be cured. The surgeon said the condition could be treated, yet less than a week after surgery he was admitted to the ICU.” (F5) “The doctor told us that my son has almost no hope. If we try to save him, we may end up losing both money and life; after the surgery, we have no money left. But if we don’t save him, he is still my son… it feels like a parent burying their child.” (F6) Conflict Between Quality of Life and Length of Life The tension between preserving life and maintaining quality of life represents afrequent ethical and emotional challenge in end-of-life decision-making. Families often struggle with whether to continue life-sustaining interventions. On one hand, they hope medical treatment may prolong the patient’s life; on the other,they fear that such prolongation may be accompanied by suffering, irreversible dysfunction, or a severely diminished quality of life. This internal conflict makes it difficult for families to reconcile the desire to extend life with the patient’s potential for meaningful living. “If we stop treatment, it feels like we’re letting her go, and we can’t bear that. But if we continue, it seems like she might stay with us for a few more years—yet she would remain bedridden, unable to recognize us, and in so much pain.”(F3) Conflict in Communicating the Patient’s Condition Some family members felt that physicians did not convey key information about the patient’s condition and prognosis in a clear and understandable manner. Within the limited timeframe, families had to process a large amount of complex information and make decisions, which could easily lead to misunderstandings and a sense of distrust. “Sometimes I can understand what the doctor says, sometimes I can’t. Sometimes I can’t express myself clearly, and when I speak in our local dialect, they don’t understand either.” (F3) “What the doctor said was ambiguous, and they left the decision to us.” (F5) “During the conversation, the doctor said a lot at once. I’m not medically trained, so I couldn’t process all that information.” (F7) Theme 3: Factors Influencing Decision-Making Subtheme 3.1 Patient factors Severity of Illness and Quality of Life The severity of the patient’s condition and anticipated quality of life are important factors influencing end-of-life decision-making. Poor prognosis and limited hope for recovery are primary reasons why families may choose to forgo treatment. “My brother has been in a coma for three days. He was admitted to the ICU after a car accident. The doctor said the injuries are very severe and there is little hope. Even if he survives, he might spend the rest of his life bedridden like a patient in a vegetative state on TV, requiring constant care.” (F4) “My mother has had hepatitis for over ten years. It has now progressed to decompensated liver cirrhosis with gastrointestinal bleeding. Last night she was urgently admitted to the ICU due to bleeding, and the doctor told me her condition is very serious.” (F10) Patient Age Patient age influences family members’ willingness to pursue aggressive treatment. The younger the patient, the more likely families are to pursue intensive interventions and make every effort to save their life. Conversely, families are more likely to consider forgoing treatment for older patients. “My father certainly cannot be compared to a young person.” (F1) “My mother’s age is already advanced; her organs are no longer at their original state.” (F3) “He is only 32 years old; his life has just begun. He must be treated, even if there is only a 10% chance.” (F6) Length of Hospitalization As the length of hospitalization increases, families’ decisions may gradually change if the patient’s condition does not improve. They need time to adjust from actively pursuing treatment to accepting the possibility of withdrawal, progressively coming to terms with reality. The longer the hospitalization, the more families perceive the patient’s suffering, increasing the likelihood of choosing toforgo treatment. “Maybe we can try a little longer. He has only been here for three days. The tube was just inserted today. Let’s see in a few more days whether he can wake up or show any improvement.” (F1) “He has been in the ICU for half a month, and the most advanced machine (ECMO) has been running for more than ten days.” (F9) “My mother has been hospitalized many times before; this time is the most severe.” (F10) Patient’s End-of-Life Wishes Family members believed that patients endure significant physical and psychological suffering during treatment; therefore, respecting the patient’s previously expressed wishes became an important basis for their decisions. “My mother was still conscious last time when she was hospitalized in our county. She told me that she wished to be buried in our hometown and that we should not bear excessive financial burden as her children.” (F3) Subtheme 3.2 family factors Economic Factors The high cost of ICU treatment influences families’ decision-making. Families with better financial resources are more likely to pursue aggressive treatment, whereas economically disadvantaged families, especially those in rural areas, may initially attempt to sustain treatment but are eventually forced to forgo it asmedical expenses become unaffordable. “My father is a retired senior cadre, and nearly all hospitalization expenses are reimbursed.” (F1) “I also wanted to save her, especially since she is so young. Through discussions with the doctors and us, I realized her illness cannot be cured. At this point, our family has very little savings, and I have already done my best.” (F2) “I am from a rural area. My parents are illiterate and we don’t have much money.” (F4) Emotional Attachment and Family Disagreement Family members’ attachment to the patient makes end-of-life decision-making extremely difficult. The inability to let go intensifies the decisional dilemma. Inaddition, disagreements among family members further complicate the decision-making process. “If he passes away, I will never have my mother again. Although she currently has no consciousness, in my heart, my mother is always alive.” (F3) “I don’t want my husband to continue suffering because the doctor told us there is no prognosis, but my mother-in-law wants to continue treatment. I can only choose to proceed with the treatment.” (F7) Subtheme 3.3 Sociocultural Factors Family members’ end-of-life decisions are greatly influenced by cultural and moral beliefs. Families deeply affected by traditional views on death and filial piety tend to pursue aggressive treatment, whereas those influenced by the “return to one’s roots” concept may prioritize having the patient return to their hometown and choose to forgo life-sustaining treatment at the end of life to fulfill the patient’s wishes. “When my mother was conscious, she told me she wanted to be buried in our hometown, next to my father, and rest in peace.” (F3) “If there really is no hope, I hope they can tell me early, not wait until all is hopeless and we are powerless. I want my father to be taken home alive, not left here or unable to reach the village.” (F5) “If my father is taken back to the village now, people will definitely comment: look, he sent his son to college, but when the father fell ill, he didn’t go to the big hospital to get treatment.” (F8) Subtheme 3.4 Medical factors Healthcare Level The level of medical care influences families’ expectations regarding treatment outcomes. When facing treatment challenges in smaller hospitals, families may place hope on more advanced medical equipment and technology, believing that transferring the patient to a larger hospital might offer a chance of survival. “We were transferred from a county hospital. At that time, the disease was not diagnosed; they only said the lungs were in very poor condition and suggested we transfer. So we called an ambulance overnight to bring him here.” (F9) Health Insurance and Reimbursement Policies Health insurance and reimbursement policies not only alleviate families’ financial burdens but also influence their decision-making tendencies. The broader the insurance coverage and the higher the reimbursement ratio, the more likely families are to pursue aggressive treatment. Conversely, when the economic burdenis heavy, families tend to carefully weigh treatment benefits. “If he is discharged, no one at home can take care of him. Hiring a caregiver costs over ten thousand yuan per month, and it cannot be reimbursed.” (F1) “We are from a rural area. Although the policy now provides insurance, it does not cover everything. For our family, it is still very difficult. My brother’s condition remains the same.” (F4) Physicians’ Recommendations Physicians play a critical role in patients’ treatment decisions. Due to their professional expertise, families often regard physicians’ opinions as authoritative and primarily rely on clinical guidance during the decision-making process. “Medically, I am a layperson. I completely rely on the doctors to make this decision.” (F5) “Professionals handle professional matters. In making decisions, I mainly follow the doctors’ tone, even if they do not state it directly.” (F10) Theme 4: Decision-Making Needs Subtheme 4.1: Need for Decision-Related Information Family members have limited access to information regarding the patient’s condition and treatment. They hope to obtain more comprehensive and easily understandable professional information to accurately comprehend medical communication and informed consent processes. “I hope to know the probability of my mother waking up, for example, a number like 0–10 to show us how severe her condition really is.” (F3) “I hope professional medical knowledge can be explained in plain and understandable language.” (F5) “I hope someone can explain to me what important treatments are available in the ICU and what they actually do. For example, if there is a problem with the lungs, is it treated with a ventilator? What are the risks?” (F8) Subtheme 4.2: Need for Decision Support ICU patients’ conditions are critical and complex, and family members bear considerable financial and psychological burdens. During the decision-making process, they face multiple concerns and require support from family members, healthcare professionals, and health insurance policies. “I am the primary decision-maker for my mother because I live with her, but I also consulted her younger siblings and my own brothers and sisters. They support my decision.” (F3) “I do not understand medicine, so I hope the doctors can provide me with more guidance because they are professionals.” (F4) “I am still not very familiar with health insurance, especially for some special and expensive ICU medications that are not covered. This also becomes a significant financial burden.” (F8) Discussion The interview results indicated that family members of ICU end-of-life patients commonly experience complex and intense negative emotional responses during the decision-making process. Previous studies [ 13 ] have shown that severe emotional distress can impair individuals’ information-processing abilities, thereby reducing the capacity of surrogate decision-makers to make rational medical decisions for critically ill patients. Therefore, in clinical practice, healthcare professionals should not only monitor changes in the patient’s condition but also pay attention to family members experiencing significant emotional stress, providing them with adequate humanistic care and psychological support. Psychological interventions, such as narrative therapy and spiritual care [ 14 , 15 ], have been shown to effectively alleviate families’ psychological burdens, offer emotional support, and enhance coping abilities. Furthermore, research [ 16 ] suggests that emotion-release therapy can significantly reduce negative emotions among family members and improve their self-efficacy and psychological adjustment capacity. In addition, systematic health education and psychological training can help family members acquire emotional management skills. Meanwhile, multidisciplinary collaboration within the healthcare team can provide comprehensive support, including psychological counseling, to help families better cope with emotional distress and promote rationaland smooth end-of-life decision-making. Yang Xiangying et al. [ 17 ] reported that most family members of critically ill patients did not receive sufficient medical information due to limited medical knowledge and constrained communication time. Consistently, this study found that family members of ICU end-of-life patients have substantial informational and support needs during end-of-life decision-making, which are influenced by multiple factors, including the patient’s condition, emotional state, economic situation, cultural background, and healthcare system. The severity of illness and anticipated survival are central criteria for families to evaluate the value of treatment, consistent with the findings of Qiao Xiaoting et al. [ 18 ], where more severe conditions were associated with higher decisional conflict. Prolonged hospitalization, declining quality of life, and deteriorating functional status may lead to decision fatigue, increasing the tendency to withdraw treatment. Family financial capacity serves as a critical practical constraint [ 11 ], while emotional attachment, psychological conflict, and decisional burden further reduce cognitive clarity and decisiveness. Sociocultural values subtly shape treatment preferences; for example, traditional filial piety may favor aggressive interventions, whereas certain cultural beliefs may encourage comfort-oriented care. Meanwhile, the technical capabilities of medical institutions, professional advice from healthcare providers, and the quality of communication affect families’ trust in prognostic assessments, and the extent of health insurance coverage influences their evaluation of the feasibility of continued treatment. Therefore, the development of a comprehensive decision aid tool should integrate these multidimensional influencing factors to provide structured, understandable, and value-congruent decision support, thereby enhancing family members’ knowledge, decision quality, and capacity to make scientifically informed and reasonable medical choices in complex situations. Strengths and Limitations This study provides an in-depth qualitative exploration of the experiences, needs, and influencing factors of family members involved in end-of-life decision-making for ICU patients. By adopting semi-structured interviews the study offers a systematic understanding of the decision-making process from the family perspective. The findings highlight multidimensional factors—clinical, emotional, economic, cultural, and healthcare system–related—that influence decision-making, providing valuable insights for the development of structured decision support tools. Moreover, the study emphasizes the importance of shared decision-making and offers practical implications for optimizing communication and psychological support in high-stress ICU settings. Several limitations should be acknowledged. First, the sample size was relatively small and drawn from a single tertiary hospital in China, which may limit the generalizability of the findings to other regions or healthcare contexts. Second, as a qualitative study, the results are subjective and rely on participants’ self-reported experiences, which could be influenced by recall bias or social desirability. Third, the study focused on family members’ perspectives and did not include direct patient input due to their critical condition, which may omit certain aspects of patient-centered decision-making. Conclusion This study conducted semi-structured interviews with 10 family members of ICU end-of-life patients to explore their experiences, current situations, needs, andinfluencing factors in end-of-life decision-making. The findings provide practical evidence for optimizing patient–family–clinician communication and developing a systematic decision support framework in end-of-life ICU contexts. Such insights can facilitate the implementation of shared decision-making and ultimately enhance the quality of care for ICU patients at the end of life. Abbreviations ICU Intensive Care Unit Declarations Ethics approval and consent to participate This study was conducted in accordance with the Declaration of Helsinki, and was approved by the Ethics Committee of the School of Nursing, Lanzhou University (Approval No. LZUHLXY20230140).All participants were fully informedabout the purpose, procedures, and voluntary nature of the study.Written informed consent was obtained from all participantsprior to participation. Consent for publication Not applicable. Competing interests The authors declare no competing interests. Funding This study was supported by Chinese Nursing Association(Grant No. ZHKYQ202520). Author Contribution Zhang ZG conceived and designed the study, Zhou HF drafted the manuscript,Yue WG and Jia DH contributed to qualitative data analysis, theme development, Wang HY assisted with data collection and data management, He CY and Yue WG fan L supervised the overall study process, provided academic oversight, and approved the final manuscript. All authors reviewed the manuscript. Acknowledgement The authors would like to thank all family members who generously shared their experiences and insights in this study. We also sincerely acknowledge the support of the ICU healthcare professionals who assisted with participant recruitment and data collection. Their cooperation and support made this study possible. Data Availability The datasets generated and/or analysed during the current study are not publicly available due to the qualitative nature of the study and the potential risk of participant identification. 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A qualitative study on the experiences of family members participating in decision-making for extracorporeal membrane oxygenation treatment in critically ill patients A qualitative study on experience of family members of critically ill patients participating in ECMO treatment decision-making. Chin J Emerg Crit Care Nurs. 2024;5(12):1068–73. Qiao XT, Sui Wj, Wang KL, et al. Research on the status quo and influencing factors of decision conflict among family members of ICU patients. Chin J Emerg Criti Care Nurs. 2024;5(8):677–82. Additional Declarations No competing interests reported. Supplementary Files SupplementaryFile1.doc Cite Share Download PDF Status: Under Review Version 1 posted Reviewers invited by journal 07 May, 2026 Editor invited by journal 13 Apr, 2026 Editor assigned by journal 22 Mar, 2026 Submission checks completed at journal 16 Mar, 2026 First submitted to journal 16 Mar, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8826186","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":641601920,"identity":"eb3c6a9d-4990-40d2-af99-5313da127e59","order_by":0,"name":"Hongfang Zhou","email":"","orcid":"","institution":"The first hospital of Lanzhou university","correspondingAuthor":false,"prefix":"","firstName":"Hongfang","middleName":"","lastName":"Zhou","suffix":""},{"id":641601921,"identity":"26eae256-a3fa-4dff-baf3-6e39a6dd467a","order_by":1,"name":"Weigang Yue","email":"","orcid":"","institution":"The first hospital of Lanzhou university","correspondingAuthor":false,"prefix":"","firstName":"Weigang","middleName":"","lastName":"Yue","suffix":""},{"id":641601927,"identity":"e500ac5f-3b41-4c46-87dc-9418bbc735e4","order_by":2,"name":"Luo Fan","email":"","orcid":"","institution":"The first hospital of Lanzhou university","correspondingAuthor":false,"prefix":"","firstName":"Luo","middleName":"","lastName":"Fan","suffix":""},{"id":641601930,"identity":"890fa4b5-da32-48d8-8657-19174b501698","order_by":3,"name":"Hengyang Wang","email":"","orcid":"","institution":"The first hospital of Lanzhou university","correspondingAuthor":false,"prefix":"","firstName":"Hengyang","middleName":"","lastName":"Wang","suffix":""},{"id":641601933,"identity":"579ac1f5-1e3d-49d9-a546-38ca3d95781b","order_by":4,"name":"Donghui Jia","email":"","orcid":"","institution":"The first hospital of Lanzhou university","correspondingAuthor":false,"prefix":"","firstName":"Donghui","middleName":"","lastName":"Jia","suffix":""},{"id":641601934,"identity":"7f468538-8b36-4cb8-bfe6-ff2be6b7e207","order_by":5,"name":"Xuhong Lan","email":"","orcid":"","institution":"Gansu Provincial Hospital","correspondingAuthor":false,"prefix":"","firstName":"Xuhong","middleName":"","lastName":"Lan","suffix":""},{"id":641601935,"identity":"d69b5038-eac1-4a5e-9962-0b48a716dd76","order_by":6,"name":"Chengying He","email":"","orcid":"","institution":"The first hospital of Lanzhou university","correspondingAuthor":false,"prefix":"","firstName":"Chengying","middleName":"","lastName":"He","suffix":""},{"id":641601936,"identity":"695a1a51-1d33-4d29-8172-689fd368033b","order_by":7,"name":"Zhigang Zhang","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAwElEQVRIiWNgGAWjYHAC5gcSPGxybOztB4jWwmZgIcNnzMdzJoF4ayQqbOQS50k4GBCnXL7/+AWDGzlm6W0SDAkMPyq2EdbC2HCm4OGMM2m5bdKNBxh7ztwmrIWZsSfBWLLnWG6bzIEEZsY2IrSwMfMkSP/99z+dTSLBgDgtPGzsBySAgZxAvBYJHh42A6AWwzZgIB8kyi/AEHsMikp5+fb2gw9+VBChBeg0RHQcIEY9ELA/IFLhKBgFo2AUjFgAADSuNwvtH7/oAAAAAElFTkSuQmCC","orcid":"","institution":"The first hospital of Lanzhou university","correspondingAuthor":true,"prefix":"","firstName":"Zhigang","middleName":"","lastName":"Zhang","suffix":""}],"badges":[],"createdAt":"2026-02-09 05:39:47","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8826186/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8826186/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":109447917,"identity":"585e7074-8ad1-4ad1-b527-a8442fbcd1dd","added_by":"auto","created_at":"2026-05-18 08:26:45","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":219226,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8826186/v1/49ba3d3a-3a08-4ef6-8f48-279b812d3f76.pdf"},{"id":109447764,"identity":"ec163eea-c388-45ca-872e-c3432b4be563","added_by":"auto","created_at":"2026-05-18 08:26:29","extension":"doc","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":13312,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryFile1.doc","url":"https://assets-eu.researchsquare.com/files/rs-8826186/v1/60cf2f51b17ece423a8516b8.doc"}],"financialInterests":"No competing interests reported.","formattedTitle":"End-of-life decision-making in the ICU:A Qualitative Study on Family Members of End-stage Patients Experience","fulltext":[{"header":"Background","content":"\u003cp\u003eWith advances in critical care medicine, life-sustaining technologies have significantly prolonged the survival of critically ill patients, and it has become increasingly common for end-of-life patients to spend their final days in the intensive care unit (ICU)[\u003cspan additionalcitationids=\"CR2\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. However, these patients often lose decisional capacity due to impaired consciousness, leaving family members to act as surrogate decision-makers[\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Evidence suggests[\u003cspan additionalcitationids=\"CR6 CR7\" citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e] that families, confronted with substantial time pressure and high levels of psychological stress, must rapidly weigh complex issues such as invasive interventions, prognostic uncertainty, and end-of-life decisions. This process frequently triggers negative emotions\u0026mdash;including anxiety, helplessness, denial, and complicated grief\u0026mdash;which in turn compromise their ability to process information and diminish the quality of decision-making. In clinical settings, limited communication time with ICU clinicians, fragmented information delivery, and a lack of structured, continuous decision-support pathways at the institutional level further intensify families\u0026rsquo; cognitive burden and psychological distress. Understanding families\u0026rsquo; decision-making experiences, needs, and influencing factors, as well as the perspectives of ICU healthcare professionals, is therefore crucial for developing systematic strategies to support decision-making.Although previous studies have examined the decision-making experiences of families involved in the care of critically ill patients[\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e], little attention has been given to the distinct group of families facing end-of-life decision-making specifically for ICU patients. Moreover, influenced by Confucian filial ethics, family collectivism, and a cultural tendency to avoid discussions about death[\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e], Chinese families often experience pronounced psychological conflict and sociocultural pressure during this process[\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].Accordingly, this study employed a qualitative research approach to explore family members\u0026rsquo; decision-making experiences, needs, influencing factors. The findings aim to inform strategies for optimizing clinical communication and constructing a structured decision-support framework, thereby promoting shared decision-making and enhancing the quality of end-of-life care.\u003c/p\u003e"},{"header":"Participants and Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eA purposive sampling strategy was employed to recruit eligible family members of end-of-life ICU patients and ICU healthcare professionals from four general ICUs of a tertiary hospital in Lanzhou, Gansu Province, between July and August 2024.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eInclusion criteria for Participants:\u003c/h3\u003e\n\u003cp\u003e①primary caregiver of the end-of-life ICU patient; ②experiencing difficulties in making end-of-life decisions;③possessing adequate communication and decision-making capacity;④voluntarily agreeing to participate and aged\u0026thinsp;\u0026ge;\u0026thinsp;18 years.\u003cb\u003eExclusion criterion\u003c/b\u003e:①failure to participate in the patient\u0026rsquo;s treatment process throughout hospitalization due to other reasons.General demographic and clinical characteristics are presented in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. This study was approved by the Ethics Committee of the School of Nursing, Lanzhou University (Approval No. LZUHLXY20230140).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eBaseline Characteristics of Family Members of End-stage Patients\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTotal(n\u0026thinsp;=\u0026thinsp;10)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e%\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e60%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge, y\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMean (range)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e43.9(28\u0026thinsp;~\u0026thinsp;61)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEducation leve\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eElementary school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHigh school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e50%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUniversity and above\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRelationship with patients\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCouple\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e20%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eparent\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e20%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eoffspring\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e50%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSibling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLength of stay in ICU (days)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;3d\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3-7d\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e60%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e30%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmergency admission to the hospital\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e50%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e50%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eterminal decision\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003elife-support treatment, LST\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eforgo life- support treatment, DFLST\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e60%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e\n\u003ch3\u003eThe Interview Guide\u003c/h3\u003e\n\u003cp\u003eThe semi-structured interview guide was developed by the research team based on the Ottawa Decision Support Framework and relevant literature. The interview guide used in this study is provided as \u003cb\u003eSupplementary File 1\u003c/b\u003e.\u003c/p\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003eA semi-structured interview approach was adopted to collect the data. All interviews were conducted in a quiet, private consultation room within the ICU and lasted approximately 20\u0026ndash;40 minutes. Prior to each interview, the researchers reviewed the patient\u0026rsquo;s medical records to understand the disease status, length of hospitalization, and treatment history. The purpose of the study was explained to the attending physician and the patient\u0026rsquo;s family members, and written informed consent was obtained. During the interviews, audio recordings were made, and the interviewer carefully observed nonverbal cues such as facial expressions, tone, and vocal nuances. Before concluding the interview, the interviewer invited participants to provide additional information to ensure that their views were fully and accurately expressed.\u003c/p\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eWithin 24\u0026ndash;48 hours after each interview, the audio recordings were transcribedverbatim into Word documents and archived. NVivo 11.0 software was used tomanage and organize the textual data. Data analysis followed Colaizzi\u0026rsquo;s seven-step method[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e], which included:1.Familiarizing oneself with all interview data to gain an overall understanding;2.Reading the transcripts verbatim and extracting significant statements;3.Coding recurrent and meaningful statements;4.Reflecting upon and clustering the codes into categories;5.Describing the emergent themes in detail and supporting them with original quotations;6.Integrating similar viewpoints to generate core themes;7.Returning to participants, when necessary, to verify the findings and refine the themes and subthemes.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eAfter repeated review and thorough analysis of the interview data from the tenfamily members of end-of-life ICU patients, a total of four major themes and twelve subthemes were identified.\u003c/p\u003e\n\u003ch3\u003eTheme 1: Decision-Making Experiences\u003c/h3\u003e\n\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eHesitation\u003c/h2\u003e \u003cp\u003eFor families of ICU end-of-life patients, no available treatment is likely to achieve an ideal clinical outcome. Influenced by traditional Chinese cultural values\u0026mdash;particularly the belief that \u0026ldquo;filial piety is the foremost of all virtues\u0026rdquo;\u0026mdash;families often struggle to let go, and withdrawing life-sustaining treatment may be perceived as a failure of filial duty. Such cultural and emotional pressures placedecision-makers in a dilemma between continuing and discontinuing life-sustaining interventions.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I am truly torn. Deciding whether my mother lives or dies is unbearably difficult for me.\u0026rdquo;\u003c/em\u003e (F3)\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I feel like I\u0026rsquo;m standing at a crossroads, unsure which path to take.\u0026rdquo;\u003c/em\u003e (F7)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eEmotional Pain and Distress\u003c/h2\u003e \u003cp\u003eThe profound grief associated with the impending loss of a loved one is one of the most common emotional reactions during end-of-life decision-making. This distress is particularly intensified when younger patients are unexpectedly admitted to the ICU. Families often struggle to accept the reality of the situation,expressing overwhelming sadness and emotional suffering.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;No matter the cost, I just want my wife to get better. But now the doctors say her chances are very slim. She has already undergone the stem cell transplant\u0026mdash;we\u0026rsquo;ve done everything possible. What am I supposed to do?\u0026rdquo;\u003c/em\u003e (crying) \u003cem\u003e\u0026ldquo;I just can\u0026rsquo;t bring myself to give up on her.\u0026rdquo;(F2)\u003c/em\u003e\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;He used to complain of headaches sometimes\u0026hellip; I can\u0026rsquo;t even imagine what it would be like to lose him.\u0026rdquo;\u003c/em\u003e (choking up) \u003cem\u003e(F6)\u003c/em\u003e\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Seeing her in so much pain makes my heart ache as well.\u0026rdquo;\u003c/em\u003e (F10)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eAcceptance of Reality\u003c/h2\u003e \u003cp\u003eIn the early stages of ICU admission, most family members hold an active and hopeful attitude toward treatment, unwilling to give up even when the prognosis is poor. However, as treatment progresses\u0026mdash;with escalating medical expenses, prolonged exhaustion, and a lack of clinical improvement\u0026mdash;some families begin to psychologically prepare themselves to accept the reality of the patient\u0026rsquo;scondition.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;He has been here for three days this time. We\u0026rsquo;ll wait a few more days, and if there\u0026rsquo;s no improvement, we\u0026rsquo;ll take him home.\u0026rdquo;\u003c/em\u003e (F1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I\u0026rsquo;m a rational person. I always think about the worst-case scenario first. If treatment is possible, we will try; if not, I just hope he can go home alive.\u0026rdquo;\u003c/em\u003e (F5)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;At first, I couldn\u0026rsquo;t believe my son had this illness. But now, after more than ten days on your hospital\u0026rsquo;s most advanced machine (ECMO) without any improvement, and with such a severe lung infection\u0026hellip; we\u0026rsquo;ve borrowed money from everyone we can. We just have to accept our fate.\u0026rdquo;\u003c/em\u003e (F9)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2: Decision-Making Status\u003c/h2\u003e \u003cdiv id=\"Sec14\" class=\"Section3\"\u003e \u003ch2\u003eDecision-making dilemma\u003c/h2\u003e \u003cp\u003eThe condition of ICU patients can deteriorate rapidly, requiring families to make high-risk decisions within a limited timeframe, while treatment outcomes and prognosis remain highly uncertain. At the same time, families face considerable financial and emotional pressures. Some believe that healthcare professionals possess greater expertise and a more comprehensive understanding of the patient's condition, and they fear that their own involvement in decision-making may result in unfavorable outcomes for which they must bear responsibility. These factors collectively place families in a profound decision-making dilemma.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Although I also have a medical background, I rarely encounter critically ill patients and do not understand much about them. You see such cases more often. I just want to know whether my father can wake up. Today the need for intubation was urgent\u0026mdash;the doctor suddenly called to say his oxygenation was poor and he needed intubation. How long will the intubation last? I even asked my colleague\u0026mdash;his relative was in your ICU a while ago and eventually went home after giving up. But the situations are not the same.\u0026rdquo;\u003c/em\u003e (F1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Every decision has two sides. If there is a chance of recovery, I would still want to treat. If not, I want the elder to suffer less. But I don\u0026rsquo;t know whether he can be cured. The surgeon said the condition could be treated, yet less than a week after surgery he was admitted to the ICU.\u0026rdquo;\u003c/em\u003e (F5)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;The doctor told us that my son has almost no hope. If we try to save him, we may end up losing both money and life; after the surgery, we have no money left. But if we don\u0026rsquo;t save him, he is still my son\u0026hellip; it feels like a parent burying their child.\u0026rdquo;\u003c/em\u003e (F6)\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eConflict Between Quality of Life and Length of Life\u003c/h2\u003e \u003cp\u003eThe tension between preserving life and maintaining quality of life represents afrequent ethical and emotional challenge in end-of-life decision-making. Families often struggle with whether to continue life-sustaining interventions. On one hand, they hope medical treatment may prolong the patient\u0026rsquo;s life; on the other,they fear that such prolongation may be accompanied by suffering, irreversible dysfunction, or a severely diminished quality of life. This internal conflict makes it difficult for families to reconcile the desire to extend life with the patient\u0026rsquo;s potential for meaningful living.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;If we stop treatment, it feels like we\u0026rsquo;re letting her go, and we can\u0026rsquo;t bear that. But if we continue, it seems like she might stay with us for a few more years\u0026mdash;yet she would remain bedridden, unable to recognize us, and in so much pain.\u0026rdquo;(F3)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eConflict in Communicating the Patient\u0026rsquo;s Condition\u003c/h2\u003e \u003cp\u003eSome family members felt that physicians did not convey key information about the patient\u0026rsquo;s condition and prognosis in a clear and understandable manner. Within the limited timeframe, families had to process a large amount of complex information and make decisions, which could easily lead to misunderstandings and a sense of distrust.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Sometimes I can understand what the doctor says, sometimes I can\u0026rsquo;t. Sometimes I can\u0026rsquo;t express myself clearly, and when I speak in our local dialect, they don\u0026rsquo;t understand either.\u0026rdquo;\u003c/em\u003e (F3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;What the doctor said was ambiguous, and they left the decision to us.\u0026rdquo;\u003c/em\u003e (F5)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;During the conversation, the doctor said a lot at once. I\u0026rsquo;m not medically trained, so I couldn\u0026rsquo;t process all that information.\u0026rdquo;\u003c/em\u003e (F7)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: Factors Influencing Decision-Making\u003c/h2\u003e \u003cdiv id=\"Sec18\" class=\"Section3\"\u003e \u003ch2\u003eSubtheme 3.1 Patient factors\u003c/h2\u003e \u003cdiv id=\"Sec19\" class=\"Section4\"\u003e \u003ch2\u003eSeverity of Illness and Quality of Life\u003c/h2\u003e \u003cp\u003eThe severity of the patient\u0026rsquo;s condition and anticipated quality of life are important factors influencing end-of-life decision-making. Poor prognosis and limited hope for recovery are primary reasons why families may choose to forgo treatment.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My brother has been in a coma for three days. He was admitted to the ICU after a car accident. The doctor said the injuries are very severe and there is little hope. Even if he survives, he might spend the rest of his life bedridden like a patient in a vegetative state on TV, requiring constant care.\u0026rdquo;\u003c/em\u003e (F4)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My mother has had hepatitis for over ten years. It has now progressed to decompensated liver cirrhosis with gastrointestinal bleeding. Last night she was urgently admitted to the ICU due to bleeding, and the doctor told me her condition is very serious.\u0026rdquo;\u003c/em\u003e (F10)\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003ePatient Age\u003c/h2\u003e \u003cp\u003ePatient age influences family members\u0026rsquo; willingness to pursue aggressive treatment. The younger the patient, the more likely families are to pursue intensive interventions and make every effort to save their life. Conversely, families are more likely to consider forgoing treatment for older patients.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My father certainly cannot be compared to a young person.\u0026rdquo;\u003c/em\u003e (F1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My mother\u0026rsquo;s age is already advanced; her organs are no longer at their original state.\u0026rdquo;\u003c/em\u003e (F3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;He is only 32 years old; his life has just begun. He must be treated, even if there is only a 10% chance.\u0026rdquo;\u003c/em\u003e (F6)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eLength of Hospitalization\u003c/h2\u003e \u003cp\u003eAs the length of hospitalization increases, families\u0026rsquo; decisions may gradually change if the patient\u0026rsquo;s condition does not improve. They need time to adjust from actively pursuing treatment to accepting the possibility of withdrawal, progressively coming to terms with reality. The longer the hospitalization, the more families perceive the patient\u0026rsquo;s suffering, increasing the likelihood of choosing toforgo treatment.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Maybe we can try a little longer. He has only been here for three days. The tube was just inserted today. Let\u0026rsquo;s see in a few more days whether he can wake up or show any improvement.\u0026rdquo;\u003c/em\u003e (F1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;He has been in the ICU for half a month, and the most advanced machine (ECMO) has been running for more than ten days.\u0026rdquo;\u003c/em\u003e (F9)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My mother has been hospitalized many times before; this time is the most severe.\u0026rdquo;\u003c/em\u003e (F10)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003ePatient\u0026rsquo;s End-of-Life Wishes\u003c/h2\u003e \u003cp\u003eFamily members believed that patients endure significant physical and psychological suffering during treatment; therefore, respecting the patient\u0026rsquo;s previously expressed wishes became an important basis for their decisions.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My mother was still conscious last time when she was hospitalized in our county. She told me that she wished to be buried in our hometown and that we should not bear excessive financial burden as her children.\u0026rdquo;\u003c/em\u003e (F3)\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003eSubtheme 3.2 family factors\u003c/h2\u003e \u003cdiv id=\"Sec24\" class=\"Section4\"\u003e \u003ch2\u003eEconomic Factors\u003c/h2\u003e \u003cp\u003eThe high cost of ICU treatment influences families\u0026rsquo; decision-making. Families with better financial resources are more likely to pursue aggressive treatment, whereas economically disadvantaged families, especially those in rural areas, may initially attempt to sustain treatment but are eventually forced to forgo it asmedical expenses become unaffordable.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My father is a retired senior cadre, and nearly all hospitalization expenses are reimbursed.\u0026rdquo;\u003c/em\u003e (F1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I also wanted to save her, especially since she is so young. Through discussions with the doctors and us, I realized her illness cannot be cured. At this point, our family has very little savings, and I have already done my best.\u0026rdquo;\u003c/em\u003e (F2)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I am from a rural area. My parents are illiterate and we don\u0026rsquo;t have much money.\u0026rdquo;\u003c/em\u003e (F4)\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003eEmotional Attachment and Family Disagreement\u003c/h2\u003e \u003cp\u003eFamily members\u0026rsquo; attachment to the patient makes end-of-life decision-making extremely difficult. The inability to let go intensifies the decisional dilemma. Inaddition, disagreements among family members further complicate the decision-making process.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;If he passes away, I will never have my mother again. Although she currently has no consciousness, in my heart, my mother is always alive.\u0026rdquo;\u003c/em\u003e (F3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I don\u0026rsquo;t want my husband to continue suffering because the doctor told us there is no prognosis, but my mother-in-law wants to continue treatment. I can only choose to proceed with the treatment.\u0026rdquo;\u003c/em\u003e (F7)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec26\" class=\"Section3\"\u003e \u003ch2\u003eSubtheme 3.3 Sociocultural Factors\u003c/h2\u003e \u003cp\u003eFamily members\u0026rsquo; end-of-life decisions are greatly influenced by cultural and moral beliefs. Families deeply affected by traditional views on death and filial piety tend to pursue aggressive treatment, whereas those influenced by the \u0026ldquo;return to one\u0026rsquo;s roots\u0026rdquo; concept may prioritize having the patient return to their hometown and choose to forgo life-sustaining treatment at the end of life to fulfill\u003c/p\u003e \u003cp\u003ethe patient\u0026rsquo;s wishes.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;When my mother was conscious, she told me she wanted to be buried in our hometown, next to my father, and rest in peace.\u0026rdquo;\u003c/em\u003e (F3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;If there really is no hope, I hope they can tell me early, not wait until all is hopeless and we are powerless. I want my father to be taken home alive, not left here or unable to reach the village.\u0026rdquo;\u003c/em\u003e (F5)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;If my father is taken back to the village now, people will definitely comment: look, he sent his son to college, but when the father fell ill, he didn\u0026rsquo;t go to the big hospital to get treatment.\u0026rdquo;\u003c/em\u003e (F8)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec27\" class=\"Section3\"\u003e \u003ch2\u003eSubtheme 3.4 Medical factors\u003c/h2\u003e \u003cdiv id=\"Sec28\" class=\"Section4\"\u003e \u003ch2\u003eHealthcare Level\u003c/h2\u003e \u003cp\u003eThe level of medical care influences families\u0026rsquo; expectations regarding treatment outcomes. When facing treatment challenges in smaller hospitals, families may place hope on more advanced medical equipment and technology, believing that transferring the patient to a larger hospital might offer a chance of survival.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;We were transferred from a county hospital. At that time, the disease was not diagnosed; they only said the lungs were in very poor condition and suggested we transfer. So we called an ambulance overnight to bring him here.\u0026rdquo;\u003c/em\u003e (F9)\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec29\" class=\"Section2\"\u003e \u003ch2\u003eHealth Insurance and Reimbursement Policies\u003c/h2\u003e \u003cp\u003eHealth insurance and reimbursement policies not only alleviate families\u0026rsquo; financial burdens but also influence their decision-making tendencies. The broader the\u003c/p\u003e \u003cp\u003einsurance coverage and the higher the reimbursement ratio, the more likely families are to pursue aggressive treatment. Conversely, when the economic burdenis heavy, families tend to carefully weigh treatment benefits.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;If he is discharged, no one at home can take care of him. Hiring a caregiver costs over ten thousand yuan per month, and it cannot be reimbursed.\u0026rdquo;\u003c/em\u003e (F1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;We are from a rural area. Although the policy now provides insurance, it does not cover everything. For our family, it is still very difficult. My brother\u0026rsquo;s condition remains the same.\u0026rdquo;\u003c/em\u003e (F4)\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003ePhysicians’ Recommendations\u003c/h3\u003e\n\u003cp\u003ePhysicians play a critical role in patients\u0026rsquo; treatment decisions. Due to their professional expertise, families often regard physicians\u0026rsquo; opinions as authoritative and primarily rely on clinical guidance during the decision-making process.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Medically, I am a layperson. I completely rely on the doctors to make this decision.\u0026rdquo;\u003c/em\u003e (F5)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Professionals handle professional matters. In making decisions, I mainly follow the doctors\u0026rsquo; tone, even if they do not state it directly.\u0026rdquo;\u003c/em\u003e (F10)\u003c/p\u003e \u003cdiv id=\"Sec31\" class=\"Section2\"\u003e \u003ch2\u003eTheme 4: Decision-Making Needs\u003c/h2\u003e \u003cdiv id=\"Sec32\" class=\"Section3\"\u003e \u003ch2\u003eSubtheme 4.1: Need for Decision-Related Information\u003c/h2\u003e \u003cp\u003eFamily members have limited access to information regarding the patient\u0026rsquo;s condition and treatment. They hope to obtain more comprehensive and easily understandable professional information to accurately comprehend medical communication and informed consent processes.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I hope to know the probability of my mother waking up, for example, a number like 0\u0026ndash;10 to show us how severe her condition really is.\u0026rdquo;\u003c/em\u003e (F3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I hope professional medical knowledge can be explained in plain and understandable language.\u0026rdquo;\u003c/em\u003e (F5)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I hope someone can explain to me what important treatments are available in the ICU and what they actually do. For example, if there is a problem with the lungs, is it treated with a ventilator? What are the risks?\u0026rdquo;\u003c/em\u003e (F8)\u003c/p\u003e \u003cdiv id=\"Sec33\" class=\"Section4\"\u003e \u003ch2\u003eSubtheme 4.2: Need for Decision Support\u003c/h2\u003e \u003cp\u003eICU patients\u0026rsquo; conditions are critical and complex, and family members bear considerable financial and psychological burdens. During the decision-making process, they face multiple concerns and require support from family members, healthcare professionals, and health insurance policies.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I am the primary decision-maker for my mother because I live with her, but I also consulted her younger siblings and my own brothers and sisters. They support my decision.\u0026rdquo;\u003c/em\u003e (F3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I do not understand medicine, so I hope the doctors can provide me with more guidance because they are professionals.\u0026rdquo;\u003c/em\u003e (F4)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I am still not very familiar with health insurance, especially for some special and expensive ICU medications that are not covered. This also becomes a significant financial burden.\u0026rdquo;\u003c/em\u003e (F8)\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe interview results indicated that family members of ICU end-of-life patients commonly experience complex and intense negative emotional responses during the decision-making process. Previous studies [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e] have shown that severe emotional distress can impair individuals\u0026rsquo; information-processing abilities, thereby reducing the capacity of surrogate decision-makers to make rational medical decisions for critically ill patients. Therefore, in clinical practice, healthcare professionals should not only monitor changes in the patient\u0026rsquo;s condition but also pay attention to family members experiencing significant emotional stress, providing them with adequate humanistic care and psychological support. Psychological interventions, such as narrative therapy and spiritual care [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e], have been shown to effectively alleviate families\u0026rsquo; psychological burdens, offer emotional support, and enhance coping abilities. Furthermore, research [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e] suggests that emotion-release therapy can significantly reduce negative emotions among family members and improve their self-efficacy and psychological adjustment capacity. In addition, systematic health education and psychological training can help family members acquire emotional management skills. Meanwhile, multidisciplinary collaboration within the healthcare team can provide comprehensive support, including psychological counseling, to help families better cope with emotional distress and promote rationaland smooth end-of-life decision-making.\u003c/p\u003e \u003cp\u003eYang Xiangying et al. [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e] reported that most family members of critically ill patients did not receive sufficient medical information due to limited medical knowledge and constrained communication time. Consistently, this study found that family members of ICU end-of-life patients have substantial informational and support needs during end-of-life decision-making, which are influenced by multiple factors, including the patient\u0026rsquo;s condition, emotional state, economic situation, cultural background, and healthcare system. The severity of illness and anticipated survival are central criteria for families to evaluate the value of treatment, consistent with the findings of Qiao Xiaoting et al. [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e], where more severe conditions were associated with higher decisional conflict. Prolonged hospitalization, declining quality of life, and deteriorating functional status may lead to decision fatigue, increasing the tendency to withdraw treatment. Family financial capacity serves as a critical practical constraint [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e], while emotional attachment, psychological conflict, and decisional burden further reduce cognitive clarity and decisiveness. Sociocultural values subtly shape treatment preferences; for example, traditional filial piety may favor aggressive interventions, whereas certain cultural beliefs may encourage comfort-oriented care. Meanwhile, the technical capabilities of medical institutions, professional advice from healthcare providers, and the quality of communication affect families\u0026rsquo; trust in prognostic assessments, and the extent of health insurance coverage influences their evaluation of the feasibility of continued treatment. Therefore, the development of a comprehensive decision aid tool should integrate these multidimensional influencing factors to provide structured, understandable, and value-congruent decision support, thereby enhancing family members\u0026rsquo; knowledge, decision quality, and capacity to make scientifically informed and reasonable medical choices in complex situations.\u003c/p\u003e\n\u003ch3\u003eStrengths and Limitations\u003c/h3\u003e\n\u003cp\u003eThis study provides an in-depth qualitative exploration of the experiences, needs, and influencing factors of family members involved in end-of-life decision-making for ICU patients. By adopting semi-structured interviews the study offers a systematic understanding of the decision-making process from the family perspective. The findings highlight multidimensional factors\u0026mdash;clinical, emotional, economic, cultural, and healthcare system\u0026ndash;related\u0026mdash;that influence decision-making, providing valuable insights for the development of structured decision support tools. Moreover, the study emphasizes the importance of shared decision-making and offers practical implications for optimizing communication and psychological support in high-stress ICU settings. Several limitations should be acknowledged. First, the sample size was relatively small and drawn from a single tertiary hospital in China, which may limit the generalizability of the findings to other regions or healthcare contexts. Second, as a qualitative study, the results are subjective and rely on participants\u0026rsquo; self-reported experiences, which could be influenced by recall bias or social desirability. Third, the study focused on family members\u0026rsquo; perspectives and did not include direct patient input due to their critical condition, which may omit certain aspects of patient-centered decision-making.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study conducted semi-structured interviews with 10 family members of ICU end-of-life patients to explore their experiences, current situations, needs, andinfluencing factors in end-of-life decision-making. The findings provide practical evidence for optimizing patient\u0026ndash;family\u0026ndash;clinician communication and developing a systematic decision support framework in end-of-life ICU contexts. Such insights can facilitate the implementation of shared decision-making and ultimately enhance the quality of care for ICU patients at the end of life.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eICU\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eIntensive Care Unit\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003ch2\u003eEthics approval and consent to participate\u003c/h2\u003e \u003cp\u003e This study was conducted in accordance with the Declaration of Helsinki, and was approved by the Ethics Committee of the School of Nursing, Lanzhou University (Approval No. LZUHLXY20230140).All participants were fully informedabout the purpose, procedures, and voluntary nature of the study.Written informed consent was obtained from all participantsprior to participation.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eConsent for publication\u003c/strong\u003e \u003cp\u003eNot applicable.\u003c/p\u003e \u003c/p\u003e\u003cp\u003e \u003ch2\u003eCompeting interests\u003c/h2\u003e \u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eThis study was supported by Chinese Nursing Association(Grant No. ZHKYQ202520).\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eZhang ZG conceived and designed the study, Zhou HF drafted the manuscript,Yue WG and Jia DH contributed to qualitative data analysis, theme development, Wang HY assisted with data collection and data management, He CY and Yue WG fan L supervised the overall study process, provided academic oversight, and approved the final manuscript. All authors reviewed the manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eThe authors would like to thank all family members who generously shared their experiences and insights in this study. We also sincerely acknowledge the support of the ICU healthcare professionals who assisted with participant recruitment and data collection. Their cooperation and support made this study possible.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe datasets generated and/or analysed during the current study are not publicly available due to the qualitative nature of the study and the potential risk of participant identification. However, anonymized data may be available from the corresponding author on reasonable request, subject to approval by the institutional ethics committee.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAdhikari NK, Fowler RA, Bhagwanjee S, et al. Critical care and the global burden of critical illness in adults. Lancet. 2010;376(9749):1339\u0026ndash;46.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSharma G, Freeman J, Zhang D, et al. Trends in end-of-life ICU use among older adults with advanced lung cancer. Chest. 2008;133(1):72\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTeno JM, Gozalo PL, Bynum JP, et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA. 2013;309(5):470\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCai XM, Robinson J, Muehlschlegel S, et al. Patient Preferences and Surrogate Decision Making in Neuroscience Intensive Care Units. Neurocrit Care. 2015;23(1):131\u0026ndash;41.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336\u0026ndash;46.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAzoulay E, Pochard F, Kentish-Barnes N, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987\u0026ndash;94.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMiller JJ, Morris P, Files DC, et al. Decision conflict and regret among surrogate decision makers in the medical intensive care unit. J Crit Care. 2016;32:79\u0026ndash;84.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAndersen SK, Butler RA, Chang CH, et al. Prevalence of long-term decision regret and associated risk factors in a large cohort of ICU surrogate decision makers. Crit Care. 2023;27(1):61.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eZhu SL, Huang LJ, Wang CL et al. Meta-synthesis of qualitative research on decision-making challenges faced by Intensive Care Unit Families. Mil Nurs 2025,42(7), 8\u0026ndash;11.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSiddiqui S, Sureish S, Chia A. Survey on Perceived Impact of Religion, Culture, and Social Network Information on Surrogate Decision-making in a South Asian Developed Country. Indian J Crit Care Med. 2018;22(9):656\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMei X, Zhang TT, Ding YH, et al. Influencing factors in making End-of life decisions for ICU terminal patients. Med Philos. 2021;42(2):46\u0026ndash;51.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLiu M. Using an example to illustrate Colaizzi s phenomenological data analysis method. J Nurs Sci. 2019;34(11):90\u0026ndash;2.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHickman RJ, Pignatiello GA, Tahir S. Evaluation of the Decisional Fatigue Scale Among Surrogate Decision Makers of the Critically Ill. West J Nurs Res. 2018;40(2):191\u0026ndash;208.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eXing SJ, Ma WG, He RX, et al. Research progress on spiritual health in patients with cancer. Chin J Nurs. 2018;53(12):1503\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eXiao YX, Li X. Application and comparison of exposure and narrative therapy in the psychological Intervention of PTSD. China J Health Psychol. 2017;25(12):1917\u0026ndash;21.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLiu QM. Effects of hospice care combined with emotional freedom techniques on negative emotions and self-efficacy in patients with advanced colorectal cancer. Int J Nurs. 2022;41(6):1086\u0026ndash;90.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYang XY, Tang AM, Lin Y, et al. A qualitative study on the experiences of family members participating in decision-making for extracorporeal membrane oxygenation treatment in critically ill patients A qualitative study on experience of family members of critically ill patients participating in ECMO treatment decision-making. Chin J Emerg Crit Care Nurs. 2024;5(12):1068\u0026ndash;73.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eQiao XT, Sui Wj, Wang KL, et al. Research on the status quo and influencing factors of decision conflict among family members of ICU patients. Chin J Emerg Criti Care Nurs. 2024;5(8):677\u0026ndash;82.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-informatics-and-decision-making","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"midm","sideBox":"Learn more about [BMC Medical Informatics and Decision Making](http://bmcmedinformdecismak.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/midm/default.aspx","title":"BMC Medical Informatics and Decision Making","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Intensive Care Units, End-stage Patients, End-of-life Decision༛Qualitative Research","lastPublishedDoi":"10.21203/rs.3.rs-8826186/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8826186/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eAdvances in intensive care medicine have increased the use of life-sustaining treatments for critically ill patients, resulting in a growing number of end-stage patients receiving end-of-life care in the intensive care unit (ICU). Because many patients lack decision-making capacity, family members are often required to participate in complex end-of-life decision-making under conditions of emotional stress and uncertainty. Understanding family members\u0026rsquo; experiences and needs is essential for improving clinical decision support in ICU settings.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA qualitative study was conducted using semi-structured interviews with 10 family members of end-stage ICU patients who experienced difficulties in end-of-life decision-making. Participants were recruited using purposive sampling. Interview data were audio-recorded, transcribed verbatim, and analyzed usingColaizzi\u0026rsquo;s seven-step method.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003e4 themes and 12 sub-themes were identified: (1) decision-making experiences (hesitation, emotional pain and distress, acceptance of reality); (2) decision-making status (decision-making dilemmas, conflict between quality and length of life, and challenges in understanding and communicating the patient\u0026rsquo;s condition); (3) influencing factors (patient-related, family-related, sociocultural and medical factors); (4) decision-making needs (information needs and decision support needs). Family members reported substantial emotional distress and uncertainty throughout the decision-making process.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eFamily members of end-stage ICU patients experience complex psychological and informational challenges during end-of-life decision-making. Limited decision-making capacity, insufficient information, and multiple contextual influences hinder effective participation in decision-making. Providing timely, structured communication and psychological support is essential to improve the quality of end-of-life decision-making in ICU settings.\u003c/p\u003e\u003ch2\u003eTrial registration\u003c/h2\u003e \u003cp\u003eNot applicable.\u003c/p\u003e","manuscriptTitle":"End-of-life decision-making in the ICU:A Qualitative Study on Family Members of End-stage Patients Experience","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-05-18 08:24:54","doi":"10.21203/rs.3.rs-8826186/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewersInvited","content":"","date":"2026-05-07T17:56:27+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-04-13T10:16:55+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-22T18:34:39+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-16T21:25:02+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Medical Informatics and Decision Making","date":"2026-03-16T16:09:24+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-informatics-and-decision-making","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"midm","sideBox":"Learn more about [BMC Medical Informatics and Decision Making](http://bmcmedinformdecismak.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/midm/default.aspx","title":"BMC Medical Informatics and Decision Making","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"474f674a-75ac-4b12-ab18-51e82c284713","owner":[],"postedDate":"May 18th, 2026","published":true,"recentEditorialEvents":[{"type":"reviewersInvited","content":"30","date":"2026-05-07T17:56:27+00:00","index":"","fulltext":""}],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-05-18T08:24:54+00:00","versionOfRecord":[],"versionCreatedAt":"2026-05-18 08:24:54","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8826186","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8826186","identity":"rs-8826186","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}