Families’ Experiences of Surrogate Decision-Making and Challenges of Shared Decision- Making: A Cross-Sectional Study

Families’ Experiences of Surrogate Decision-Making and Challenges of Shared Decision- Making: A Cross-Sectional Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Families’ Experiences of Surrogate Decision-Making and Challenges of Shared Decision- Making: A Cross-Sectional Study Kanako Yamamoto This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4205018/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Family members who make surrogate decisions tend to be emotionally burdened and may have difficulty making decisions that fit the patient’s wishes. The specific kinds of support a family needs to receive from medical practitioners to make surrogate decisions are unclear. This study aimed to identify the information and support needs of families with experience in surrogate decision-making. Methods This cross-sectional study used questionnaires. Family members with experience making surrogate decisions for treatments that affected the patient's life and prognosis were included. Participants were recruited using an online panel through a private research company in Japan. For the survey items, participants were asked to specify one case in which they made a surrogate decision and describe the resources they used to support their decision-making. In addition, participants were assessed on a 10-point scale to determine their sense of satisfaction with the decision, whether the decision was in accordance with the patient’s wishes, and their level of emotional burden. Knowledge and understanding of life-sustaining treatments were also investigated. Results Sixty participants were included. Family members were significantly more likely to perceive that they made surrogate decisions in line with the patient’s wishes than with the family’s wishes (P = 0.04). In addition, the resources used when making surrogate decisions were often discussed among family members (n = 49, 81.7%). There was also a strong need for easy-to-understand information regarding the multiple options for patient prognosis and treatment. However, regarding knowledge of life-sustaining treatments, understanding of assisted circulation devices was low (n = 26, 43.3%). Important values when making surrogate decisions include whether the patient has recovered consciousness, their age, and survival rate. Conclusion Family members tended to make surrogate decisions in line with patients’ wishes. Healthcare professionals must accurately communicate information, including multiple treatment options and prognoses so that family members can determine the best treatment for patients from various perspectives. There is also a need to take an interest in the process of family discussion and provide emotional support along with decision-making, considering the emotional stress on families. surrogate decision-making family surrogate shared decision-making end-of-life palliative care patient Figures Figure 1 Figure 2 Background When an adult patient with a loss or decline in decision-making capacity needs to make treatment or care decisions, surrogates make decisions on their behalf. In general, the surrogate decision-maker is a trusted person designated by the patient or the patient's family [ 1 , 2 ]. Concerns have been raised about the accuracy of decision-making by a surrogate. For example, 1/3 of surrogate decision-makers may incorrectly predict the patient’s wishes [ 3 ], the surrogate’s wishes may take precedence over the patient’s wishes [ 4 , 5 ], and agreement on treatment understanding and decisions between patients and surrogates may be inadequate [ 6 ]. In addition, surrogate decision-makers are burdened by the extent of their responsibility [ 7 ] and are more likely to have depression and post-traumatic stress disorder when making treatment decisions that affect the patient’s survival or prognosis [ 8 ]. Surrogate decision-makers are required to understand the treatment being administered to the patient and make surrogate decisions that reflect the patient’s wishes. The medical-clinical terms used by healthcare professionals make it difficult for surrogate decision-makers to understand treatment [ 9 , 10 ]. Approximately 50–70% of surrogate decision-makers have a poor understanding of the treatment provided to the patient [ 11 , 12 ]. Surrogate decision-makers may choose costly and futile treatments by failing to consider the patient’s values and wishes, thereby increasing the burden on the patient [ 13 , 14 ]. However, if there is an advance care planning (ACP) process in which patients disclose their treatment wishes and goals, and share them with healthcare providers and surrogates, they report significantly less conflict regarding surrogate decision-making [ 15 , 16 ]. Having prior ACP discussions with a family member or healthcare professional can help respect patient autonomy and reduce the emotional burden on surrogates. There is no clearly defined and widely recognized definition of surrogate decision-making quality. Assessing the quality of surrogate decision-making is difficult because there are many differences depending on whom the decision is judged to benefit, that is, the patient, the surrogate, or both. There is also a lack of clarity regarding the quality of surrogate decision-making. However, I believe that it is important to support both the patient’s right to independence and the surrogate decision-maker in reducing conflicts regarding decision-making. To achieve this, the preparation and decision-making processes must be enhanced [ 1 ]. What we know so far is that surrogate decision-making does not increase satisfaction by simply encouraging patients to understand the treatment. Factors related to the quality of surrogate decision-making include clarifying patient values and identifying preferences [ 17 ]. Healthcare professionals play an important role in helping surrogates make decisions in line with the patient’s wishes. However, many healthcare professionals struggle to support surrogate decision-makers. Lack of support, including lack of communication, also creates conflict between healthcare professionals and surrogate decision-makers [ 18 ]. The support needs of surrogate decision-makers need to be clarified and healthcare professionals need to understand how to support surrogate decisions. This will help in identifying ways to provide educational support for both. Few previous studies have detailed the decision-making process of surrogates. In particular, what kind of support families require from healthcare professionals for surrogate decision-making is not clear. This study aimed to clarify the current status of family surrogate decision-making. Through this, the information requirements for surrogate decision-making and what kinds of support they need from healthcare professionals can be identified. Methods Study design and definition of the term This cross-sectional study used a questionnaire. In this study, “surrogate decision-making” was defined as follows: A patient's family member or other person designated by the patient makes decisions about the course of treatment on behalf of the patient who is incapacitated. The content of the treatment is a decision that affects the patient’s life and prognosis. This includes information on life-saving procedures, and withholding or interrupting treatment. Participants This study used an online panel recruited through a private Japanese research company. The inclusion criteria for the participants were as follows: (1) participants between 18 and 79 years of age who had experience in making decisions on behalf of patients during hospitalization and (2) patients with malignant tumors, neuromedical and surgical diseases, cardiovascular medical and other surgical diseases, and emergency disease. The exclusion criteria were as follows: (1) the participant had a history of being diagnosed with cognitive problems and (2) the participant was currently unable to lead an independent life. The study aimed to have a minimum sample size of 50. Recruitment methods and study procedures The procedure used in this study is illustrated in Fig. 1. Candidates were recruited online through a research company with a panel of “Family members of patients who are visiting a doctor or staying in hospital due to any illness.” At the time, the population was 20,000 people. Candidates were asked to read a document online outlining the research before deciding to apply for the study. Next, the candidates answered five screening questions. The screening items were: (1) whether you have experienced surrogate decision-making for hospitalized patients, (2) the name of the patient’s disease, (3) the content of the surrogate decision-making, (4) whether you have experienced a diagnosis such as cognitive decline or dementia, and (5) whether you are currently able to lead an independent life. Additionally, the researcher checked whether the screening items they answered met the criteria. From these candidates, a research company conducted simple random sampling and selected 250 participants. This number was determined based on the expectation that the recovery rate would be approximately 50%. The research explanation and questionnaire were then presented to participants online. If the participants agreed to participate, they completed an online questionnaire. The responses were closed when a sample size of 60 was obtained. Survey items The study surveyed (1) details of when the surrogates made decisions and (2) perceptions of life-sustaining treatment and resuscitation measures. The survey items were answered using descriptive formulas regarding the content of surrogate decision-making and the patient’s disease. In addition, decision-making tools were selected from these options. Moreover, the support they wanted to receive from healthcare professionals was determined using an open-ended questionnaire. Regarding the quality of decision-making, the degree of satisfaction and stress in surrogate decision-making were assessed using a Numeric Rating Scale ranging from 0 to 10. Furthermore, respondents answered questions about their experiences in discussing life-sustaining treatments with patients, knowledge of life-sustaining treatments and resuscitation measures, and confidence in making surrogate decisions. Using the Control Preference Scale as a basis [ 19 ], I created options and investigated surrogates’ preferences for decision-making roles. The characteristics of the participants included sex, age, employment status, education, and family status. The details of the survey are shown in Additional File 1. Analysis For the analysis of the questionnaire, basic statistics were calculated using SPSS Ver. 25 for numerical data. After basic statistics were calculated, normality was confirmed, and descriptive statistics were obtained. Descriptive statistics were paired with t-tests and χ 2 tests for nominal scales. Significance was set at < 5% (two-tailed). The free-text data were subjected to content analysis using NVivo and the prevalence of descriptions was confirmed. Ethical considerations The study was approved by the institutional research ethics committee (approval number: 22 A-036). Participants were informed in writing about the purpose of the study, research methods, participation in and withdrawal from the study, personal information protection and data management, publication of results, and withdrawal of consent. Basic attribute data were coded and kept anonymous so that the data could not be identified. Results Sixty participants were included in the analysis (Table 1). The mean age (standard deviation) of the participants was 55.3 ± 13.0, and 42 (70.0%) were men. As for the preference regarding decision-making roles, “Me and the physician decide together equally” was the most common at 26 (43.3%). Current status of surrogate decision-making by family members Family members were asked to select one case involving surrogate decision-making (Table 2). When family members made surrogate decisions, 15 patients (25.0%) had cranial nervous system diseases. Regarding the content of decision-making, 27 (45.0%) concerned life-sustaining treatment and 10 (16.7%) concerned emergency surgery. There was a significant difference in the sense of satisfaction with surrogate decision-making between decisions in line with the patient's wishes (7.3 ± 2.2) and the family's own wishes (6.4 ± 2.7) (P = .044) (Fig. 2). A positive correlation was found between these variables (r = 0.338, P = .008) (Table 3). Furthermore, the degree of emotional burden experienced when families made surrogate decisions was 7.0 ± 2.6. Moreover, discussions among family members were the most common reference points for making surrogate decisions, with 49 cases (81.7%). In addition, I inquired about the support that family members wanted to receive when making surrogate decisions (Table 4). Nineteen (31.7%) answered that the support from healthcare professionals was sufficient. Highly needed kinds of support included prognostication, information on available treatments and options, and prospects for progress and recovery after each treatment. Perceptions of life-sustaining and resuscitative treatments Twenty-six (43.3%) family members did not understand the assisted circulation devices (Table 5). Regarding respiratory care, 53 (88.3%) participants answered that they did not understand noninvasive positive pressure management. The most common procedure recognized as being included in “cardiopulmonary resuscitation” was cardiac massage by 50 respondents (83.3%). In addition, the difficulty of asking patients about the medical care they would like to receive in a life crisis differed among participants. Additionally, regarding the perception of important information and values when making surrogate decisions, 42 (70.0%) surrogates most often mentioned whether the patient’s consciousness would recover with treatment. The patient’s age was 40 years (66.7%), the survival rate was 30 years (50%), and the age of the family was 28 years (46.7%). Discussion This study revealed the understanding of information, perception of values, and the quality of decision-making in the process of family members making surrogate decisions. Several previous studies have indicated that surrogates may make treatment decisions that are not in line with the patient’s wishes [ 20 , 21 ]. However, in this study, families who had experienced surrogate decision-making perceived that they made decisions that prioritized the patient’s wishes. I consider that there are two reasons for this observation. First, the decision support for the family by healthcare professionals may have been helpful appropriately. Second, many participants had experience in surrogate decision-making regarding life-sustaining treatments. Many families might have had more time to make decisions and consider the patient’s wishes. The most common reference for surrogate decision-making is discussion among family members. One conjecture is that decision-making was not based on medical information alone. Family members who make surrogate decisions regarding patient treatment bear a huge responsibility and burden [ 22 ]. Considering the patient’s autonomy by discussing the topic among the family members is essential [ 23 ]. In addition to helping families work together to determine the best treatment for patients, tools to share the process with healthcare professionals could improve the quality of surrogate decision-making. Moreover, learning programs and education on how to support families of end-of-life patients are being developed [ 24 , 25 ], and decision-making support from healthcare professionals and psychological support for families may have been provided. It is important to educate surrogates on how to make decisions that respect the patient’s autonomy [ 22 ]. It is essential to support the family in making the best treatment decision for the patient, while also listening to their wishes and thoughts and reinforcing their mental care so that the decision is acceptable not only to the patient but also to the family [ 26 ]. However, the results of this study did not reveal any factors associated with family members’ emotional burden related to surrogate decision-making. The results also suggest that, even if surrogate decision-makers understand the patient’s treatment wishes, it may be difficult for them to reduce their emotional burden. It is also evident that even if family members recognize that life-sustaining treatment is not appropriate for the patient, they may find it difficult to make life-saving or life-sustaining surrogate decisions regarding the loss of their loved one [ 27 ]. Healthcare professionals should be encouraged to simultaneously provide care related to family member crises and anticipatory grief during the surrogate decision-making process. In addition, patients and their families often do not have prior experience with the ACP process. Therefore, the challenge is that the surrogate can only speculate about the patient's intentions [ 29 ]. I believe that coordinating with the patient and family to discuss ACP early in the treatment initiation phase represents necessary support by healthcare professionals. Furthermore, surrogate decision-makers might make decisions with an inadequate understanding of life-saving treatments. When a patient's condition suddenly changes, there is often insufficient time to make treatment decisions [ 30 ]. Surrogates are expected to make critical decisions while dealing with crises and anxiety caused by the event. Healthcare professionals need to assist the family in making surrogate decisions that respect the patient’s autonomy while providing emotional support for the surrogate’s crisis state [ 6 , 22 , 27 ]. Healthcare professionals and family members often do not have the same perceptions regarding treatment [ 31 , 32 ]. The ability to provide appropriate and understandable information and explanations, even under time constraints, is essential for healthcare providers [ 33 ]. This process has been shown to enhance shared decision-making [ 34 ]. However, providing decision makers with the necessary information and understanding under time constraints is not easy. It may be useful to utilize decision aids that supplement healthcare professionals’ explanations and assist in complex decision support. In this case, the key is for healthcare professionals to understand the values held by the patient and the surrogate [ 35 ]. In this study, the surrogates identified important information and values when making decisions. It might be useful for healthcare professionals to include this information when facilitating shared decision-making and to present the benefits and risks associated with treatment options to the surrogate decision-maker. Recently, an abundance of information has become available, such as via the Internet and social networking services, making it more difficult to gather correct information [ 36 ]. Healthcare providers play an important role in ensuring that evidence-based information is accurately communicated to patients and surrogate decision-makers [ 34 ]. In this regard, it is necessary to be aware that the information is not simply about the treatment but also about the benefits and risks for patients. Furthermore, it is necessary to use tools such as pamphlets with visual aids to facilitate understanding of the information [ 34 , 37 ]. In addition to circulating these tools, I believe that nurses and other healthcare professionals should support them by providing counseling and coaching, thereby supporting surrogate decision-making that is in line with patients’ values. Although I endeavored to collect cross-sectional information from Japan, the sample size was small. In addition, the details of the medical support received when surrogate decision-making was performed were unclear. Therefore, it was not possible to determine the level of medical support that was effective for the surrogate decision-makers. Furthermore, I believe that when making a surrogate decision, it is necessary to be fully informed and understand the benefits and risks of the options; however, this point could not be clarified and may be a factor that biased the results. Conclusion Family members who made surrogate decisions tended to prioritize the patients’ wishes over those of family members. However, family members had a high need for information about the patient’s predicted prognosis and whether the patient could return to daily life after treatment, and they wanted appropriate information provided by healthcare professionals. For surrogate decision-making, not only involvement with healthcare professionals but also discussion among family members are important factors, suggesting that it may be necessary to build a support system, including facilitating agreement among family members’ thoughts and perceptions, for the provision of patient-centered care. Abbreviations ACP Advance care planning Declarations Ethics approval and consent to participate The study was approved by the Ethics Committee of St. Luke’s International University (approval number: 22-A101) and conducted in accordance with the Declaration of Helsinki. Participants were provided with written explanations of the survey’s purpose, research methods, details of participation in and withdrawal from the survey, protection of personal information, and data management methods used in the study. All study participants provided written informed consent. Furthermore, data, such as basic attributes, were coded to maintain participant anonymity. Consent for publication Not applicable. Availability of data and materials The datasets used and/or analyzed in the current study are available from the corresponding author upon reasonable request. Competing interests The author declares that they have no competing interests. Funding This study was supported by the Japan Society for the Promotion of Science, KAKENHI (grant number: JP22K17456). The funding source had no role in the study design or conduct; data collection, management, and analysis; or approval of the manuscript. Authors’ contributions KY designed the study, collected the data, analyzed and interpreted the results, and prepared the manuscript. References Kim H, Deatrick JA, Ulrich CM. Ethical frameworks for surrogates' end-of-life planning experiences. Nurs Ethics. 2017;24(1):46-69. doi:10.1177/0969733016638145. Wrigley A. Proxy consent: moral authority misconceived. J Med Ethics. 2007 Sep;33(9):527-31. doi:10.1136/jme.2006.019711. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166(5):493-7. doi:10.1001/archinte.166.5.493. ,. Yamamoto K, Yonekura Y, Nakayama K. 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The effect of format on parents' understanding of the risks and benefits of clinical research: a comparison between text, tables, and graphics. J Health Commun. 2010;15(5):487-501. doi:10.1080/10810730.2010.49 Tables Tables 1 to 5 are available in the Supplementary Files section Additional Declarations No competing interests reported. Supplementary Files BMCPC24.4.Additionalfile1.docx BMCPC24.4.Familydecisiontable15.xlsx Cite Share Download PDF Status: Posted Version 1 posted 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. 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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-4205018","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":288721387,"identity":"0c5bbf4d-5103-420c-8080-e2a17f123980","order_by":0,"name":"Kanako Yamamoto","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA10lEQVRIiWNgGAWjYDACHhBxgEGOgR0qwNhApBZjBmZStSQ2MBNSCQMGZw4/e/DjjE36/GbmZw8YauwYmGcTsMbgbJu5Yc+NtNwNh9nMDRiOJTMwzjlAQMt5BjMJng+Hczcw87BJMLAdYGCckUBIC/s3yT8fDqfLN4O0/CNGy9keM2meG4cTGA4DtTC2EaFF8syZMmmZM2mGQL+YSST2JfMQ9AvfmfRtkm+O2cjLtzc/k/jwzU7OkFCIKaAYCXQSj+EM/DoY5DGMlJcgoGUUjIJRMApGHAAAgOJCrvVVeuEAAAAASUVORK5CYII=","orcid":"","institution":"St. Luke’s International University","correspondingAuthor":true,"prefix":"","firstName":"Kanako","middleName":"","lastName":"Yamamoto","suffix":""}],"badges":[],"createdAt":"2024-04-02 08:23:42","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4205018/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4205018/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":54450004,"identity":"c29a9efe-2e41-408d-9a60-3ad2bd6b1b50","added_by":"auto","created_at":"2024-04-10 17:41:49","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":83172,"visible":true,"origin":"","legend":"\u003cp\u003eStudy Process\u003c/p\u003e","description":"","filename":"BMCPCFig124.4.png","url":"https://assets-eu.researchsquare.com/files/rs-4205018/v1/ee5b83f4ef9c61098a05eebf.png"},{"id":54450006,"identity":"ad011305-53dd-44db-ab3c-0ce9b0689144","added_by":"auto","created_at":"2024-04-10 17:41:49","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":5713,"visible":true,"origin":"","legend":"\u003cp\u003eThis image is not available with this version.\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-4205018/v1/b9858509c6f18248a12057cf.png"},{"id":57592386,"identity":"942049a6-ada4-42c9-b2c1-026c2d7e3807","added_by":"auto","created_at":"2024-06-03 05:51:08","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":460260,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4205018/v1/79f83e26-6682-4501-8629-921ce269a90a.pdf"},{"id":54450008,"identity":"55713f76-3a14-4d94-9e37-063992eef7cf","added_by":"auto","created_at":"2024-04-10 17:41:50","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":38775,"visible":true,"origin":"","legend":"","description":"","filename":"BMCPC24.4.Additionalfile1.docx","url":"https://assets-eu.researchsquare.com/files/rs-4205018/v1/b90e43b260524f48394aea82.docx"},{"id":54450005,"identity":"92106699-01ad-4c4a-9bda-1e90210573ec","added_by":"auto","created_at":"2024-04-10 17:41:49","extension":"xlsx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":21618,"visible":true,"origin":"","legend":"","description":"","filename":"BMCPC24.4.Familydecisiontable15.xlsx","url":"https://assets-eu.researchsquare.com/files/rs-4205018/v1/63b721cba207b53c5b165198.xlsx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Families’ Experiences of Surrogate Decision-Making and Challenges of Shared Decision- Making: A Cross-Sectional Study","fulltext":[{"header":"Background","content":"\u003cp\u003eWhen an adult patient with a loss or decline in decision-making capacity needs to make treatment or care decisions, surrogates make decisions on their behalf. In general, the surrogate decision-maker is a trusted person designated by the patient or the patient's family [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Concerns have been raised about the accuracy of decision-making by a surrogate. For example, 1/3 of surrogate decision-makers may incorrectly predict the patient\u0026rsquo;s wishes [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e], the surrogate\u0026rsquo;s wishes may take precedence over the patient\u0026rsquo;s wishes [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e], and agreement on treatment understanding and decisions between patients and surrogates may be inadequate [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. In addition, surrogate decision-makers are burdened by the extent of their responsibility [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e] and are more likely to have depression and post-traumatic stress disorder when making treatment decisions that affect the patient\u0026rsquo;s survival or prognosis [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eSurrogate decision-makers are required to understand the treatment being administered to the patient and make surrogate decisions that reflect the patient\u0026rsquo;s wishes. The medical-clinical terms used by healthcare professionals make it difficult for surrogate decision-makers to understand treatment [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Approximately 50\u0026ndash;70% of surrogate decision-makers have a poor understanding of the treatment provided to the patient [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Surrogate decision-makers may choose costly and futile treatments by failing to consider the patient\u0026rsquo;s values and wishes, thereby increasing the burden on the patient [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. However, if there is an advance care planning (ACP) process in which patients disclose their treatment wishes and goals, and share them with healthcare providers and surrogates, they report significantly less conflict regarding surrogate decision-making [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Having prior ACP discussions with a family member or healthcare professional can help respect patient autonomy and reduce the emotional burden on surrogates. There is no clearly defined and widely recognized definition of surrogate decision-making quality. Assessing the quality of surrogate decision-making is difficult because there are many differences depending on whom the decision is judged to benefit, that is, the patient, the surrogate, or both. There is also a lack of clarity regarding the quality of surrogate decision-making. However, I believe that it is important to support both the patient\u0026rsquo;s right to independence and the surrogate decision-maker in reducing conflicts regarding decision-making. To achieve this, the preparation and decision-making processes must be enhanced [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWhat we know so far is that surrogate decision-making does not increase satisfaction by simply encouraging patients to understand the treatment. Factors related to the quality of surrogate decision-making include clarifying patient values and identifying preferences [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Healthcare professionals play an important role in helping surrogates make decisions in line with the patient\u0026rsquo;s wishes. However, many healthcare professionals struggle to support surrogate decision-makers. Lack of support, including lack of communication, also creates conflict between healthcare professionals and surrogate decision-makers [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. The support needs of surrogate decision-makers need to be clarified and healthcare professionals need to understand how to support surrogate decisions. This will help in identifying ways to provide educational support for both. Few previous studies have detailed the decision-making process of surrogates. In particular, what kind of support families require from healthcare professionals for surrogate decision-making is not clear.\u003c/p\u003e \u003cp\u003eThis study aimed to clarify the current status of family surrogate decision-making. Through this, the information requirements for surrogate decision-making and what kinds of support they need from healthcare professionals can be identified.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design and definition of the term\u003c/h2\u003e \u003cp\u003eThis cross-sectional study used a questionnaire. In this study, \u0026ldquo;surrogate decision-making\u0026rdquo; was defined as follows: A patient's family member or other person designated by the patient makes decisions about the course of treatment on behalf of the patient who is incapacitated. The content of the treatment is a decision that affects the patient\u0026rsquo;s life and prognosis. This includes information on life-saving procedures, and withholding or interrupting treatment.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eThis study used an online panel recruited through a private Japanese research company. The inclusion criteria for the participants were as follows: (1) participants between 18 and 79 years of age who had experience in making decisions on behalf of patients during hospitalization and (2) patients with malignant tumors, neuromedical and surgical diseases, cardiovascular medical and other surgical diseases, and emergency disease. The exclusion criteria were as follows: (1) the participant had a history of being diagnosed with cognitive problems and (2) the participant was currently unable to lead an independent life. The study aimed to have a minimum sample size of 50.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eRecruitment methods and study procedures\u003c/h2\u003e \u003cp\u003eThe procedure used in this study is illustrated in Fig.\u0026nbsp;1. Candidates were recruited online through a research company with a panel of \u0026ldquo;Family members of patients who are visiting a doctor or staying in hospital due to any illness.\u0026rdquo; At the time, the population was 20,000 people. Candidates were asked to read a document online outlining the research before deciding to apply for the study. Next, the candidates answered five screening questions. The screening items were: (1) whether you have experienced surrogate decision-making for hospitalized patients, (2) the name of the patient\u0026rsquo;s disease, (3) the content of the surrogate decision-making, (4) whether you have experienced a diagnosis such as cognitive decline or dementia, and (5) whether you are currently able to lead an independent life. Additionally, the researcher checked whether the screening items they answered met the criteria. From these candidates, a research company conducted simple random sampling and selected 250 participants. This number was determined based on the expectation that the recovery rate would be approximately 50%. The research explanation and questionnaire were then presented to participants online. If the participants agreed to participate, they completed an online questionnaire. The responses were closed when a sample size of 60 was obtained.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eSurvey items\u003c/h2\u003e \u003cp\u003eThe study surveyed (1) details of when the surrogates made decisions and (2) perceptions of life-sustaining treatment and resuscitation measures. The survey items were answered using descriptive formulas regarding the content of surrogate decision-making and the patient\u0026rsquo;s disease. In addition, decision-making tools were selected from these options. Moreover, the support they wanted to receive from healthcare professionals was determined using an open-ended questionnaire. Regarding the quality of decision-making, the degree of satisfaction and stress in surrogate decision-making were assessed using a Numeric Rating Scale ranging from 0 to 10. Furthermore, respondents answered questions about their experiences in discussing life-sustaining treatments with patients, knowledge of life-sustaining treatments and resuscitation measures, and confidence in making surrogate decisions. Using the Control Preference Scale as a basis [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e], I created options and investigated surrogates\u0026rsquo; preferences for decision-making roles. The characteristics of the participants included sex, age, employment status, education, and family status. The details of the survey are shown in Additional File 1.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eAnalysis\u003c/h2\u003e \u003cp\u003eFor the analysis of the questionnaire, basic statistics were calculated using SPSS Ver. 25 for numerical data. After basic statistics were calculated, normality was confirmed, and descriptive statistics were obtained. Descriptive statistics were paired with t-tests and χ\u003csup\u003e2\u003c/sup\u003e tests for nominal scales. Significance was set at \u0026lt;\u0026thinsp;5% (two-tailed). The free-text data were subjected to content analysis using NVivo and the prevalence of descriptions was confirmed.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eEthical considerations\u003c/h2\u003e \u003cp\u003e The study was approved by the institutional research ethics committee (approval number: 22 A-036). Participants were informed in writing about the purpose of the study, research methods, participation in and withdrawal from the study, personal information protection and data management, publication of results, and withdrawal of consent. Basic attribute data were coded and kept anonymous so that the data could not be identified.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eSixty participants were included in the analysis (Table\u0026nbsp;1). The mean age (standard deviation) of the participants was 55.3\u0026thinsp;\u0026plusmn;\u0026thinsp;13.0, and 42 (70.0%) were men. As for the preference regarding decision-making roles, \u0026ldquo;Me and the physician decide together equally\u0026rdquo; was the most common at 26 (43.3%).\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eCurrent status of surrogate decision-making by family members\u003c/h2\u003e \u003cp\u003eFamily members were asked to select one case involving surrogate decision-making (Table\u0026nbsp;2). When family members made surrogate decisions, 15 patients (25.0%) had cranial nervous system diseases. Regarding the content of decision-making, 27 (45.0%) concerned life-sustaining treatment and 10 (16.7%) concerned emergency surgery. There was a significant difference in the sense of satisfaction with surrogate decision-making between decisions in line with the patient's wishes (7.3\u0026thinsp;\u0026plusmn;\u0026thinsp;2.2) and the family's own wishes (6.4\u0026thinsp;\u0026plusmn;\u0026thinsp;2.7) (P\u0026thinsp;=\u0026thinsp;.044) (Fig.\u0026nbsp;2). A positive correlation was found between these variables (r\u0026thinsp;=\u0026thinsp;0.338, P\u0026thinsp;=\u0026thinsp;.008) (Table\u0026nbsp;3). Furthermore, the degree of emotional burden experienced when families made surrogate decisions was 7.0\u0026thinsp;\u0026plusmn;\u0026thinsp;2.6. Moreover, discussions among family members were the most common reference points for making surrogate decisions, with 49 cases (81.7%). In addition, I inquired about the support that family members wanted to receive when making surrogate decisions (Table\u0026nbsp;4). Nineteen (31.7%) answered that the support from healthcare professionals was sufficient. Highly needed kinds of support included prognostication, information on available treatments and options, and prospects for progress and recovery after each treatment.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003ePerceptions of life-sustaining and resuscitative treatments\u003c/h2\u003e \u003cp\u003eTwenty-six (43.3%) family members did not understand the assisted circulation devices (Table\u0026nbsp;5). Regarding respiratory care, 53 (88.3%) participants answered that they did not understand noninvasive positive pressure management. The most common procedure recognized as being included in \u0026ldquo;cardiopulmonary resuscitation\u0026rdquo; was cardiac massage by 50 respondents (83.3%). In addition, the difficulty of asking patients about the medical care they would like to receive in a life crisis differed among participants. Additionally, regarding the perception of important information and values when making surrogate decisions, 42 (70.0%) surrogates most often mentioned whether the patient\u0026rsquo;s consciousness would recover with treatment. The patient\u0026rsquo;s age was 40 years (66.7%), the survival rate was 30 years (50%), and the age of the family was 28 years (46.7%).\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study revealed the understanding of information, perception of values, and the quality of decision-making in the process of family members making surrogate decisions. Several previous studies have indicated that surrogates may make treatment decisions that are not in line with the patient\u0026rsquo;s wishes [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. However, in this study, families who had experienced surrogate decision-making perceived that they made decisions that prioritized the patient\u0026rsquo;s wishes. I consider that there are two reasons for this observation. First, the decision support for the family by healthcare professionals may have been helpful appropriately. Second, many participants had experience in surrogate decision-making regarding life-sustaining treatments. Many families might have had more time to make decisions and consider the patient\u0026rsquo;s wishes. The most common reference for surrogate decision-making is discussion among family members. One conjecture is that decision-making was not based on medical information alone. Family members who make surrogate decisions regarding patient treatment bear a huge responsibility and burden [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Considering the patient\u0026rsquo;s autonomy by discussing the topic among the family members is essential [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. In addition to helping families work together to determine the best treatment for patients, tools to share the process with healthcare professionals could improve the quality of surrogate decision-making. Moreover, learning programs and education on how to support families of end-of-life patients are being developed [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e], and decision-making support from healthcare professionals and psychological support for families may have been provided.\u003c/p\u003e \u003cp\u003eIt is important to educate surrogates on how to make decisions that respect the patient\u0026rsquo;s autonomy [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. It is essential to support the family in making the best treatment decision for the patient, while also listening to their wishes and thoughts and reinforcing their mental care so that the decision is acceptable not only to the patient but also to the family [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. However, the results of this study did not reveal any factors associated with family members\u0026rsquo; emotional burden related to surrogate decision-making. The results also suggest that, even if surrogate decision-makers understand the patient\u0026rsquo;s treatment wishes, it may be difficult for them to reduce their emotional burden.\u003c/p\u003e \u003cp\u003eIt is also evident that even if family members recognize that life-sustaining treatment is not appropriate for the patient, they may find it difficult to make life-saving or life-sustaining surrogate decisions regarding the loss of their loved one [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Healthcare professionals should be encouraged to simultaneously provide care related to family member crises and anticipatory grief during the surrogate decision-making process. In addition, patients and their families often do not have prior experience with the ACP process.\u003c/p\u003e \u003cp\u003eTherefore, the challenge is that the surrogate can only speculate about the patient's intentions [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. I believe that coordinating with the patient and family to discuss ACP early in the treatment initiation phase represents necessary support by healthcare professionals. Furthermore, surrogate decision-makers might make decisions with an inadequate understanding of life-saving treatments. When a patient's condition suddenly changes, there is often insufficient time to make treatment decisions [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Surrogates are expected to make critical decisions while dealing with crises and anxiety caused by the event. Healthcare professionals need to assist the family in making surrogate decisions that respect the patient\u0026rsquo;s autonomy while providing emotional support for the surrogate\u0026rsquo;s crisis state [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Healthcare professionals and family members often do not have the same perceptions regarding treatment [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. The ability to provide appropriate and understandable information and explanations, even under time constraints, is essential for healthcare providers [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. This process has been shown to enhance shared decision-making [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. However, providing decision makers with the necessary information and understanding under time constraints is not easy. It may be useful to utilize decision aids that supplement healthcare professionals\u0026rsquo; explanations and assist in complex decision support. In this case, the key is for healthcare professionals to understand the values held by the patient and the surrogate [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. In this study, the surrogates identified important information and values when making decisions. It might be useful for healthcare professionals to include this information when facilitating shared decision-making and to present the benefits and risks associated with treatment options to the surrogate decision-maker.\u003c/p\u003e \u003cp\u003eRecently, an abundance of information has become available, such as via the Internet and social networking services, making it more difficult to gather correct information [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. Healthcare providers play an important role in ensuring that evidence-based information is accurately communicated to patients and surrogate decision-makers [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. In this regard, it is necessary to be aware that the information is not simply about the treatment but also about the benefits and risks for patients. Furthermore, it is necessary to use tools such as pamphlets with visual aids to facilitate understanding of the information [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. In addition to circulating these tools, I believe that nurses and other healthcare professionals should support them by providing counseling and coaching, thereby supporting surrogate decision-making that is in line with patients\u0026rsquo; values.\u003c/p\u003e \u003cp\u003eAlthough I endeavored to collect cross-sectional information from Japan, the sample size was small. In addition, the details of the medical support received when surrogate decision-making was performed were unclear. Therefore, it was not possible to determine the level of medical support that was effective for the surrogate decision-makers. Furthermore, I believe that when making a surrogate decision, it is necessary to be fully informed and understand the benefits and risks of the options; however, this point could not be clarified and may be a factor that biased the results.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eFamily members who made surrogate decisions tended to prioritize the patients\u0026rsquo; wishes over those of family members. However, family members had a high need for information about the patient\u0026rsquo;s predicted prognosis and whether the patient could return to daily life after treatment, and they wanted appropriate information provided by healthcare professionals. For surrogate decision-making, not only involvement with healthcare professionals but also discussion among family members are important factors, suggesting that it may be necessary to build a support system, including facilitating agreement among family members\u0026rsquo; thoughts and perceptions, for the provision of patient-centered care.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eACP\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eAdvance care planning\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study was approved by\u0026nbsp;the Ethics Committee\u0026nbsp;of St. Luke’s International University (approval number: 22-A101) and conducted in accordance with the Declaration of Helsinki.\u0026nbsp;Participants were provided with written explanations of the survey’s purpose, research methods, details of participation in and withdrawal from the survey, protection of personal information, and\u0026nbsp;data management methods used in the study.\u0026nbsp;All study participants provided written informed consent. Furthermore, data, such as basic attributes, were coded to maintain participant anonymity.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analyzed in the current study are available from the corresponding author\u0026nbsp;upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe author declares that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was supported by the\u0026nbsp;Japan Society for the Promotion of Science,\u0026nbsp;KAKENHI (grant number: JP22K17456). The funding source had no role in the study design or conduct; data collection, management,\u0026nbsp;and analysis; or approval of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors’ contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eKY designed the study, collected the data, analyzed and interpreted the results, and prepared the manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eKim H, Deatrick JA, Ulrich CM. Ethical frameworks for surrogates\u0026apos; end-of-life planning experiences. Nurs Ethics. 2017;24(1):46-69. doi:10.1177/0969733016638145. \u003c/li\u003e\n\u003cli\u003eWrigley A. Proxy consent: moral authority misconceived. J Med Ethics. 2007 Sep;33(9):527-31. doi:10.1136/jme.2006.019711.\u003c/li\u003e\n\u003cli\u003eShalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166(5):493-7. doi:10.1001/archinte.166.5.493. \u003c/li\u003e\n\u003cli\u003e,. Yamamoto K, Yonekura Y, Nakayama K. Healthcare providers\u0026apos; perception of advance care planning for patients with critical illnesses in acute-care hospitals: a cross-sectional study. BMC Palliat Care. 2022;21(1):7. doi:10.1186/s12904-021-00900-5.\u003c/li\u003e\n\u003cli\u003eWu F, Zhuang Y, Chen X, Wen H, Tao W, Lao Y, Zhou H. Decision-making among the substitute decision makers in intensive care units: an investigation of decision control preferences and decisional conflicts. J Adv Nurs. 2020;76(9):2323-2335. doi:10.1111/jan.14451.\u003c/li\u003e\n\u003cli\u003eMarks MA, Arkes HR. Patient and surrogate disagreement in end-of-life decisions: can surrogates accurately predict patients\u0026apos; preferences? Med Decis Making. 2008;28(4):524-31. doi:10.1177/0272989X08315244.\u003c/li\u003e\n\u003cli\u003eRogers AH, Lopez RP. Systematic review revisited, 2010-2020: the effect on surrogates of making treatment decisions for others. J Palliat Care. 2023;38(1):71-77. doi:10.1177/08258597221098124.\u003c/li\u003e\n\u003cli\u003eAzoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C, 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):987-94. doi:10.1164/rccm.200409-1295OC.\u003c/li\u003e\n\u003cli\u003eMistraletti G, Umbrello M, Mantovani ES, Moroni B, Formenti P, Spanu P, et al. A family information brochure and dedicated website to improve the ICU experience for patients\u0026apos; relatives: an Italian multicenter before-and-after study. Intensive Care Med. 2017;43(1):69-79. doi:10.1007/s00134-016-4592-0.\u003c/li\u003e\n\u003cli\u003eRodriguez RM, Navarrete E, Schwaber J, McKleroy W, Clouse A, Kerrigan SF, Fortman J. A prospective study of primary surrogate decision makers\u0026apos; knowledge of intensive care. Crit Care Med. 2008;36(5):1633-6. doi:10.1097/CCM.0b013e31816a0784.\u003c/li\u003e\n\u003cli\u003eAzoulay E, Chevret S, Leleu G, Pochard F, Barboteu M, Adrie C, et al. Half the families of intensive care unit patients experience inadequate communication with physicians. Crit Care Med. 2000;28(8):3044-9. doi:10.1097/00003246-200008000-00061. \u003c/li\u003e\n\u003cli\u003eDebaty G, Ageron FX, Minguet L, Courtiol G, Escallier C, Henniche A, et al. More than half the families of mobile intensive care unit patients experience inadequate communication with physicians. Intensive Care Med. 2015;41(7):1291-8. doi:10.1007/s00134-015-3890-2.\u003c/li\u003e\n\u003cli\u003eMark NM, Rayner SG, Lee NJ, Curtis JR. Global variability in withholding and withdrawal of life-sustaining treatment in the intensive care unit: a systematic review. Intensive Care Med. 2015;41(9):1572-85. doi:10.1007/s00134-015-3810-5.\u003c/li\u003e\n\u003cli\u003eSui W, Gong X, Qiao X, Zhang L, Cheng J, Dong J, Zhuang Y. Family members\u0026apos; perceptions of surrogate decision-making in the intensive care unit: a systematic review. Int J Nurs Stud. 2023;137:104391. doi:10.1016/j.ijnurstu.2022.104391\u003c/li\u003e\n\u003cli\u003eChiarchiaro J, Buddadhumaruk P, Arnold RM, White DB. Prior advance care planning Is associated with less decisional conflict among surrogates for critically ill patients. Ann Am Thorac Soc. 2015;12(10):1528-33. doi:10.1513/AnnalsATS.201504-253OC.\u003c/li\u003e\n\u003cli\u003eMajesko A, Hong SY, Weissfeld L, White DB. Identifying family members who may struggle in the role of surrogate decision maker. Crit Care Med. 2012;40(8):2281-6. doi:10.1097/CCM.0b013e3182533317.\u003c/li\u003e\n\u003cli\u003eShepherd V. (Re)Conceptualising \u0026apos;good\u0026apos; proxy decision-making for research: the implications for proxy consent decision quality. BMC Med Ethics. 2022;23(1):75. doi:10.1186/s12910-022-00809-5.\u003c/li\u003e\n\u003cli\u003eMiller JJ, Morris P, Files DC, Gower E, Young M. Decision conflict and regret among surrogate decision makers in the medical intensive care unit. J Crit Care. 2016;32:79-84. doi:10.1016/j.jcrc.2015.11.023. \u003c/li\u003e\n\u003cli\u003eStrull WM, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA. 1984;252(21):2990-4.\u003c/li\u003e\n\u003cli\u003eShalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006 Mar 13;166(5):493-7. doi:10.1001/archinte.166.5.493. \u003c/li\u003e\n\u003cli\u003eMulcahy Symmons S, Ryan K, Aoun SM, Selman LE, Davies AN, Cornally N, Lombard J, et al. Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis. BMJ Support Palliat Care. 2023;13(4):374-385. doi:10.1136/bmjspcare-2022-003525. \u003c/li\u003e\n\u003cli\u003eYamamoto K. Impact of Advance Care Planning Support on Patients Treated in the Intensive Care Unit After High-Risk Surgery. Cureus. 2024;16(2):e54175. doi: 10.7759/cureus.54175.\u003c/li\u003e\n\u003cli\u003eHodgkinson S, Ruegger J, Field-Smith A, Latchem S, Ahmedzai SH. Care of dying adults in the last days of life. Clin Med (Lond). 2016;16(3):254-8. doi:10.7861/clinmedicine.16-3-254. \u003c/li\u003e\n\u003cli\u003eLi WW, Chhabra J, Singh S. Palliative care education and its effectiveness: a systematic review. Public Health. 2021;194:96-108. doi:10.1016/j.puhe.2021.02.033.\u003c/li\u003e\n\u003cli\u003eKristanti MS, Hidayati NW, Maryadi. Comparison of palliative care education for family caregivers in high-and-low-income countries: an integrative review. Belitung Nurs J. 2023;9(5):411-420. doi:10.33546/bnj.2713. \u003c/li\u003e\n\u003cli\u003eAnderson RJ, Bloch S, Armstrong M, Stone PC, Low JT. Communication between healthcare professionals and relatives of patients approaching the end-of-life: a systematic review of qualitative evidence. Palliat Med. 2019;33(8):926-941. doi:10.1177/0269216319852007.\u003c/li\u003e\n\u003cli\u003eYamamoto K, Yonekura Y, Hayama J, Matsubara T, Misumi H, Nakayama K. Advance care planning for intensive care patients during the perioperative period: a qualitative study. SAGE Open Nurs. 2021;7:23779608211038845. doi:10.1177/23779608211038845.\u003c/li\u003e\n\u003cli\u003eYamamoto K, Kaido T, Yokoi T, Shimada G, Taketa T, Nakayama K. Implementation of advance care planning decision aids for patients undergoing high-risk surgery: a field-testing study. BMC Palliat Care. 2022;21(1):179. doi:10.1186/s12904-022-01068-2.\u003c/li\u003e\n\u003cli\u003eSimmons DB, Levi BH, Green MJ, La IS, Lipnick D, Smith TJ, et al. What surrogates understand (and don\u0026apos;t understand) about patients\u0026apos; wishes after engaging advance care planning: a qualitative analysis. Am J Hosp Palliat Care. 2022;39(4):427-432. doi:10.1177/10499091211026674.\u003c/li\u003e\n\u003cli\u003eLincoln TE, Buddadhumaruk P, Arnold RM, Scheunemann LP, Ernecoff NC, Chang CH, et al. Association between shared decision-making during family meetings and surrogates\u0026apos; trust in their ICU physician. Chest. 2023;163(5):1214-1224. doi:10.1016/j.chest.2022.10.028.\u003c/li\u003e\n\u003cli\u003eAnstey MH, Litton E, Trevenen ML, Thompson K, Webb S, Seppelt I, Mitchell IA. The prevalence of perceptions of mismatch between treatment intensity and achievable goals of care in the intensive care unit: a cross-sectional study. Intensive Care Med. 2019;45(4):459-467. doi:10.1007/s00134-019-05543-y.\u003c/li\u003e\n\u003cli\u003eAnstey MH, Litton E, Jha N, Trevenen ML, Webb S, Mitchell IA. A comparison of the opinions of intensive care unit staff and family members of the treatment intensity received by patients admitted to an intensive care unit: a multicentre survey. Aust Crit Care. 2019;32(5):378-382. doi:10.1016/j.aucc.2018.08.008.\u003c/li\u003e\n\u003cli\u003eElwyn G, Durand MA, Song J, Aarts J, Barr PJ, Berger Z, et al. A three-talk model for shared decision making: multistage consultation process. BMJ. 2017;359:j4891. doi:10.1136/bmj.j4891.\u003c/li\u003e\n\u003cli\u003eStacey D, Lewis KB, Smith M, Carley M, Volk R, Douglas EE, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2024;1(1):CD001431. doi:10.1002/14651858.CD001431.\u003c/li\u003e\n\u003cli\u003eScheunemann LP, Ernecoff NC, Buddadhumaruk P, Carson SS, Hough CL, Curtis JR, et al. Clinician-family communication about patients\u0026apos; values and preferences in intensive care units. JAMA Intern Med. 2019;179(5):676-684. doi:10.1001/jamainternmed.2019.0027.\u003c/li\u003e\n\u003cli\u003eNakayama K, Yonekura Y, Danya H, Hagiwara K. Associations between health literacy and information-evaluation and decision-making skills in Japanese adults. BMC Public Health. 2022;22(1):1473. doi:10.1186/s12889-022-13892-5.\u003c/li\u003e\n\u003cli\u003eTait AR, Voepel-Lewis T, Zikmund-Fisher BJ, Fagerlin A. The effect of format on parents\u0026apos; understanding of the risks and benefits of clinical research: a comparison between text, tables, and graphics. J Health Commun. 2010;15(5):487-501. doi:10.1080/10810730.2010.49\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTables 1 to 5 are available in the Supplementary Files section\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"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":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"surrogate decision-making, family, surrogate, shared decision-making, end-of-life, palliative care, patient","lastPublishedDoi":"10.21203/rs.3.rs-4205018/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4205018/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFamily members who make surrogate decisions tend to be emotionally burdened and may have difficulty making decisions that fit the patient’s wishes. The specific kinds of support a family needs to receive from medical practitioners to make surrogate decisions are unclear. This study aimed to identify the information and support needs of families with experience in surrogate decision-making.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis cross-sectional study used questionnaires. Family members with experience making surrogate decisions for treatments that affected the patient's life and prognosis were included. Participants were recruited using an online panel through a private research company in Japan. For the survey items, participants were asked to specify one case in which they made a surrogate decision and describe the resources they used to support their decision-making. In addition, participants were assessed on a 10-point scale to determine their sense of satisfaction with the decision, whether the decision was in accordance with the patient’s wishes, and their level of emotional burden. Knowledge and understanding of life-sustaining treatments were also investigated.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSixty participants were included. Family members were significantly more likely to perceive that they made surrogate decisions in line with the patient’s wishes than with the family’s wishes (P = 0.04). In addition, the resources used when making surrogate decisions were often discussed among family members (n = 49, 81.7%).\u003c/p\u003e\n\u003cp\u003eThere was also a strong need for easy-to-understand information regarding the multiple options for patient prognosis and treatment. However, regarding knowledge of life-sustaining treatments, understanding of assisted circulation devices was low (n = 26, 43.3%). Important values when making surrogate decisions include whether the patient has recovered consciousness, their age, and survival rate.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFamily members tended to make surrogate decisions in line with patients’ wishes. Healthcare professionals must accurately communicate information, including multiple treatment options and prognoses so that family members can determine the best treatment for patients from various perspectives. There is also a need to take an interest in the process of family discussion and provide emotional support along with decision-making, considering the emotional stress on families.\u003c/p\u003e","manuscriptTitle":"Families’ Experiences of Surrogate Decision-Making and Challenges of Shared Decision- Making: A Cross-Sectional Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-04-10 17:41:45","doi":"10.21203/rs.3.rs-4205018/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"846f6469-2a2f-402f-ac13-5d2fd42639af","owner":[],"postedDate":"April 10th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2024-06-03T05:43:01+00:00","versionOfRecord":[],"versionCreatedAt":"2024-04-10 17:41:45","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4205018","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4205018","identity":"rs-4205018","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}