Conservative Kidney Management in a Young Patient With Severe Intellectual Disability: Clinical Implications for Kidney Therapy Decision-Making - A Case Report

Conservative Kidney Management in a Young Patient With Severe Intellectual Disability: Clinical Implications for Kidney Therapy Decision-Making - A Case Report | 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 Case Report Conservative Kidney Management in a Young Patient With Severe Intellectual Disability: Clinical Implications for Kidney Therapy Decision-Making - A Case Report Hajime Hirano, Tomohisa Matsunaga, Takahiro Inoue, Yu Munakata, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9069749/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 12 You are reading this latest preprint version Abstract Background Conservative kidney management (CKM) is increasingly recognized as a patient-centered treatment pathway for individuals with advanced chronic kidney disease (CKD). However, most CKM frameworks assume that patients can participate in shared decision-making, and little guidance exists for younger patients with lifelong decisional incapacity. Case presentation We report the case of a young adult with advanced CKD secondary to congenital anomalies of the kidney and urinary tract and severe intellectual disability who lacked decisional capacity. As kidney failure progressed, all modalities of kidney replacement therapy, including hemodialysis, peritoneal dialysis, and kidney transplantation, were considered. However, concerns regarding treatment feasibility, caregiver burden, and anticipated impact on quality of life led to the selection of CKM after repeated multidisciplinary discussions involving clinicians and family members. Home-based medical care and visiting nursing services were introduced to support symptom management and family caregivers. The patient remained on CKM without dialysis initiation and died peacefully at home 35 months later, surrounded by family. Conclusions This case highlights the ethical and clinical challenges of kidney therapy decision-making in patients with severe intellectual disability who cannot participate in shared decision-making. CKM may represent an ethically and clinically appropriate care pathway when dialysis is technically feasible but unlikely to improve patient-centered outcomes. Conservative kidney management Advanced chronic kidney disease Intellectual disability Decisional incapacity Shared decision-making Ethics Background Conservative kidney management (CKM) is increasingly recognized as a legitimate treatment pathway for patients with advanced chronic kidney disease (CKD), particularly among older adults and those with substantial comorbidity. Growing evidence suggests that, in selected populations, CKM may provide acceptable survival with reduced treatment burden and hospitalization compared with dialysis-centered care [ 1 – 3 ]. To our knowledge, this is among the first reported cases in which CKM was selected for a young adult with lifelong decisional incapacity, a population systematically excluded from existing CKM frameworks. Despite this progress, existing CKM frameworks largely assume that patients can participate meaningfully in shared decision-making (SDM). In clinical practice, however, nephrologists increasingly encounter patients who lack decisional capacity due to cognitive impairment, neurodevelopmental disorders, or severe psychiatric illness. In such cases, dialysis may be technically feasible yet poorly aligned with patient-centered goals, raising complex ethical and practical challenges. Recent literature has emphasized the need to reconceptualize SDM in kidney failure as an iterative process that can incorporate surrogate decision-making, uncertainty, and evolving goals of care [ 4 , 5 ]. Ethical analyses and clinical practice guidelines further recognize that dialysis initiation is not obligatory when anticipated burdens outweigh potential benefits, and that CKM should be presented as a valid alternative within patient-centered care. Nevertheless, there remains limited guidance on how to operationalize CKM for younger patients with lifelong decisional incapacity, in whom the long-term implications of dialysis-related burden may be particularly profound. Here, we report a case of a young adult with advanced CKD and severe intellectual disability in whom CKM was selected after extensive multidisciplinary and family-centered deliberation. Beyond the rarity of the clinical scenario, this case highlights a broader and increasingly relevant challenge in nephrology: situations in which renal replacement therapy is technically feasible but unlikely to improve patient-centered outcomes. By describing the ethical reasoning and multidisciplinary process that led to CKM selection, this report aims to provide practical insights for clinicians facing similar decision-making dilemmas. Case Presentation The patient had progressive CKD secondary to congenital anomalies of the kidney and urinary tract (CAKUT). As the patient had lifelong severe intellectual disability and lacked decisional capacity throughout the clinical course, it was not possible to obtain a first-person patient perspective on the treatment received. Kidney function gradually declined toward kidney failure, with an estimated glomerular filtration rate of approximately 15.9 mL/min/1.73 m² and ongoing progression, prompting discussions regarding future kidney replacement therapy options. As kidney failure progressed, all modalities of renal replacement therapy (RRT) were systematically considered. Hemodialysis raised concerns regarding vascular access maintenance, treatment-related distress, and the need for physical restraint. Peritoneal dialysis was also evaluated; however, risks related to infection, catheter management, and caregiver burden were deemed substantial. Kidney transplantation was discussed but considered inappropriate because of anticipated difficulties with postoperative care and long-term immunosuppression. Multiple multidisciplinary conferences were conducted involving nephrologists, nurses, mental health professionals, and social workers, together with the patient’s parents who served as surrogate decision-makers. These discussions focused on treatment feasibility, expected treatment burden, and the patient’s overall quality of life. The clinical course and stepwise decision-making process are summarized in Table 1 . After repeated discussions and confirmation that decisions could be revisited if circumstances changed, CKM was selected as the primary treatment strategy. Home-based medical care and visiting nursing services were introduced early to support symptom management, nutritional care, and caregiver coping, reinforcing CKM as an active and adaptable care pathway rather than a fixed endpoint. The patient remained on conservative kidney management without dialysis initiation and died peacefully at home 35 months later, surrounded by family. Table 1 Timeline of clinical events and family discussions leading to the selection of CKM Timeline (Date) Clinical Findings Clinical Interventions Family Discussions/ Interventions Outcomes January 202X, Week 1 S-Cr: 3.8 mg/dL eGFR: 15.9 mL/min/1.73 m² Initial CKM discussion; RRT options introduced Parents expressed initial hesitation regarding dialysis Continued monitoring planned January 202X, Week 4 S-Cr: 3.9 mg/dL eGFR: 15.4 mL/min/1.73 m² Follow-up outpatient visit to reassess kidney function Family expressed interest in learning more about CKM Educational session on QOL planned February 202X, Week 3 S-Cr: 4.0 mg/dL eGFR: 15.0 mL/min/1.73 m² CKM and RRT feasibility compared Parents leaning toward CKM; MSW introduced for support Decision-making framework established March 202X, Week 2 S-Cr: 4.2 mg/dL eGFR: 14.2 mL/min/1.73 m² Multidisciplinary team reviewed CKM implementation Siblings consulted remotely; psychological counseling provided Plan for further discussion at next visit April 202X, Week 1 S-Cr: 4.3 mg/dL eGFR: 13.8 mL/min/1.73 m² Detailed QOL assessment completed Family voiced preference for CKM but requested time to confirm Next steps aligned with CKM pathway May 202X, Week 2 S-Cr: 4.5 mg/dL eGFR: 13.2 mL/min/1.73 m² Final pre-CKM review conducted Agreement reached among family members; MSW facilitated discussions CKM confirmed June 202X, Week 1 S-Cr: 4.7 mg/dL eGFR: 12.6 mL/min/1.73 m² Home care framework initiated Parents trained for home-based end-of-life care CKM implementation initiated July 202X, Week 2 S-Cr: 4.85 mg/dL eGFR: 12.1 mL/min/1.73 m² CKM progress evaluation Family satisfaction assessed; anticipatory grief support continued CKM ongoing; family support ongoing CKM, conservative kidney management; eGFR, estimated glomerular filtration rate (mL/min/1.73 m²); MSW, medical social worker; QOL, quality of life; RRT, renal replacement therapy; S-Cr, serum creatinine (mg/dL). Discussion The present case illustrates that chronological age alone is an insufficient criterion for kidney therapy decision-making. A growing body of evidence suggests that conservative kidney management (CKM) can provide acceptable survival while reducing symptom burden and hospitalization in selected populations, supporting a shift away from dialysis-centered default frameworks toward individualized, goal-concordant care [ 1 – 3 ]. A central challenge in this case was the patient’s lifelong decisional incapacity. Contemporary models of shared decision-making (SDM) emphasize patient preferences and values; however, these models are not directly applicable when patients cannot meaningfully participate in deliberation. In such circumstances, decision-making must be reconceptualized as a surrogate- and best-interest–based process rather than an autonomy-driven one. Recent literature emphasizes that SDM in kidney failure should be viewed as iterative and flexible, incorporating clinical uncertainty, reversibility of decisions, and the evolving perspectives of families and care teams [ 4 , 5 ]. The stepwise multidisciplinary discussions summarized in Table 1 illustrate how ethically grounded decisions can be achieved through repeated dialogue and shared clinical reflection. Importantly, dialysis initiation is not obligatory when it is unlikely to provide meaningful benefit. Clinical guidelines and ethical analyses explicitly recognize that forgoing dialysis may be appropriate when anticipated burdens outweigh potential gains in survival or quality of life [ 6 – 8 ]. In the present case, although renal replacement therapy was technically feasible, all modalities were expected to impose substantial physical distress, disruption of daily routines, and increased caregiver burden. Under such circumstances, CKM represented a proportionate and ethically defensible approach. CKM should not be interpreted as the absence of treatment. Rather, it represents an active clinical pathway integrating symptom management, psychosocial support, and anticipatory care planning. Decision aids and structured communication strategies may facilitate these discussions and improve engagement of patients and families in care planning [ 8 ]. However, surveys continue to demonstrate substantial variability in CKM implementation across nephrology practices [ 9 , 10 ]. Normalizing CKM as a standard component of kidney care remains an important priority. An existential perspective further clarifies the rationale for CKM in patients with lifelong decisional incapacity. Patients with advanced CKD often experience distress related not only to physical symptoms but also to threats to dignity, identity, and meaning [ 11 , 12 ]. When patients cannot articulate preferences, preserving continuity of lived experience and minimizing suffering that the patient could neither comprehend nor communicate may become ethically salient priorities. These considerations align with meaning-centered approaches developed in serious illness care, which emphasize preserving dignity and coherence of life even when curative treatment is not possible [ 13 ]. Surrogate decision-making also places substantial emotional and psychological burden on families. Systematic reviews demonstrate that acting as a surrogate is associated with anxiety, decisional conflict, and long-term regret [ 14 ]. Accordingly, clinicians should recognize that decision-making support for families represents a core component of kidney care rather than a peripheral task. Finally, this case resonates with broader discussions about the goals of medicine at the limits of life-sustaining treatment. Ultimately, the role of clinicians is not solely to prolong life but to support care that remains meaningful and proportionate to the patient’s circumstances. Framing CKM as an active, dignity-centered form of care may help clinicians move beyond reflexive dialysis initiation and toward more nuanced, patient-centered decision-making. Strengths and Limitations This case has several strengths. The stepwise multidisciplinary decision-making process was documented prospectively and is presented with sufficient clinical detail to be reproducible in other settings. The 35-month follow-up period provides rare longitudinal insight into the natural course of advanced CKD managed without dialysis in a young patient with lifelong decisional incapacity. Furthermore, the integration of ethical, psychosocial, and existential perspectives offers a multidimensional framework that extends beyond conventional clinical reporting. Nevertheless, several limitations should be acknowledged. First, as a single-case report, the findings cannot be generalized, and selection bias cannot be excluded. Second, formal quality-of-life or symptom-burden assessments using validated instruments were not performed, in part because the patient's cognitive impairment precluded self-report. Third, the cultural and healthcare-system context of Japan — where family-centered decision-making is prominent and home-based end-of-life care is increasingly supported — may limit direct applicability to settings with different legal frameworks or resource availability. Finally, the identity of the patient has been fully anonymized, which, while necessary to protect privacy, precludes verification of clinical details by external reviewers. Conclusion This case demonstrates that conservative kidney management can be an ethically and clinically appropriate option for younger patients with advanced CKD who lack decisional capacity. Kidney therapy decisions should extend beyond age and technical feasibility to incorporate treatment burden, quality of life, and the preservation of a coherent lived experience. Integrating surrogate-based decision-making frameworks, evidence-informed CKM practices, and an existentially informed perspective may help guide kidney care for vulnerable populations not adequately addressed by traditional dialysis-centered models. Declarations Ethics approval and consent to participate Ethical approval was waived by the Institutional Review Board of Tokyo Women's Medical University because this report describes a single clinical case without experimental intervention. This study was conducted in accordance with the ethical standards of the institutional research committee and with the 1964 Declaration of Helsinki and its later amendments. Consent for publication Written informed consent for publication of this case report was obtained from the patient’s legal guardian, who served as the surrogate decision-maker. Competing interests The authors declare that they have no competing interests. Funding This research received no specific grant from any funding agency. Authors’ contributions H.H. conceived the study and drafted the manuscript. T.M., T.I., Y.M., T.Mac., and T.Mo. contributed to patient care and data collection. H.A. and N.H. supervised the project and critically revised the manuscript. All authors read and approved the final manuscript. Acknowledgements AI-assisted language tools were used for grammar and style editing. Data availability The data underlying this article will be shared on reasonable request to the corresponding author. References O’Connor NR, Kumar P. Conservative management of end-stage renal disease without dialysis: a systematic review. J Palliat Med. 2012;15(2):228-35. doi:10.1089/jpm.2011.0207. Bundó D, Cunillera O, Arbiol-Roca A, et al. Final Stage of Chronic Kidney Disease with Conservative Kidney Management or Renal Replacement Therapy: A Primary-Care Population Study. J Clin Med. 2023;12(14):4602. doi:10.3390/jcm12144602. Chou A, et al. Survival, symptoms and hospitalization of older patients with advanced chronic kidney disease managed without dialysis. Nephrol Dial Transplant. 2023;38(2):405-13. doi:10.1093/ndt/gfac154. Saeed F, Jawed A, Gazaway S, Hall RK, Klein-Fedyshin M, Bowling B, Schell JO. Supporting Shared Decision-Making in Life-Altering Kidney Therapy Decisions for Older Adults: A Review. JAMA Intern Med. 2025;185(12):1479-88. doi:10.1001/jamainternmed.2025.5554. Kanbay M, Basile C, Battaglia Y, et al. Shared decision making in elderly patients with kidney failure. Nephrol Dial Transplant. 2024;39(5):742-51. doi:10.1093/ndt/gfad211. Moss AH. Revised Dialysis Clinical Practice Guideline Promotes More Informed Decision-Making. Clin J Am Soc Nephrol. 2010;5(12):2380-83. doi:10.2215/CJN.07150810. Zisman-Ilani Y, Rhee CM, Al Ammary F, Kalantar-Zadeh K. Shared decision making and decision aids in the management of kidney disease and renal replacement treatment options. Curr Opin Nephrol Hypertens. 2026 Jan 1;35(1):13-20. doi:10.1097/MNH.0000000000001140. Epub 2025 Nov 21. Schwartz AR et al. , 2025 U.S. Department of Veterans Affairs and U.S. Department of Defense Clinical Practice Guideline for the Primary Care Management of Chronic Kidney Disease. Ann Intern Med. 2025 Dec 30. doi: 10.7326/ANNALS-25-03499. Chotivatanapong J. et al. A National Survey of Conservative Kidney Management Practices for Patients Who Forgo RRT. Kidney360. 2024;5(3):363-9. doi:10.34067/KID.0000000000000367. Wong SPY, Oestreich T, Prince DK, Curtis JR. A Patient Decision Aid About Conservative Kidney Management in Advanced Kidney Disease: A Randomized Pilot Trial. Am J Kidney Dis. 2023;82(2):179-88. doi:10.1053/j.ajkd.2022.12.007. Davison SN, Jhangri GS. Existential and supportive care needs among patients with chronic kidney disease. J Pain Symptom Manage. 2010;40(6):838-43. doi:10.1016/j.jpainsymman.2010.03.015. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5(2):195-204. doi:10.2215/CJN.05960809. Breitbart W, Poppito S, Rosenfeld B, et al. Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. J Clin Oncol. 2012;30(12):1304-9. doi:10.1200/JCO.2011.36.2517. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336-46. doi:10.7326/0003-4819-154-5-201103010-00008. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 08 Apr, 2026 Reviews received at journal 07 Apr, 2026 Reviews received at journal 29 Mar, 2026 Reviews received at journal 16 Mar, 2026 Reviewers agreed at journal 14 Mar, 2026 Reviewers agreed at journal 14 Mar, 2026 Reviewers agreed at journal 12 Mar, 2026 Reviewers invited by journal 12 Mar, 2026 Editor invited by journal 12 Mar, 2026 Editor assigned by journal 11 Mar, 2026 Submission checks completed at journal 11 Mar, 2026 First submitted to journal 09 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. 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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-9069749","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Case Report","associatedPublications":[],"authors":[{"id":607119114,"identity":"145a31f9-0923-4210-84e1-c6596ef9a5ab","order_by":0,"name":"Hajime Hirano","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA+0lEQVRIiWNgGAWjYBACA2YIncDAcLCBgaECLsFGrJYzBkRoYYBrAQLGNgOcKuHAnJ334eeCCoY8/sbDrRs+zvuTuHZGAuOHHwx8ebi0WDazG0vPOMNQLHHgYNvNmdsMErfdSGCW7GFgK8bpsMNsDNK8bQyJDUAtt3m3GeQCtTBIA/2S2IBbC/NvkJb5IC1/54C1MP8moIUNbMsGkBbGBrAWNkK2sFnznJFI3AjyS88x4/ptZx62WfYY4PHL+WPMt3kqbBLn3Tj+7MaPGjljs+PJh2/8qDiGM8SgQAKIDsA4jEAnGRxLIKAFCPhR3V5DhJZRMApGwSgYIQAAQKFd4f5Dd2wAAAAASUVORK5CYII=","orcid":"","institution":"Tokyo Women's Medical University","correspondingAuthor":true,"prefix":"","firstName":"Hajime","middleName":"","lastName":"Hirano","suffix":""},{"id":607119115,"identity":"154579e6-dbe5-4166-89ec-9d13b0a97159","order_by":1,"name":"Tomohisa Matsunaga","email":"","orcid":"","institution":"Osaka Medical and Pharmaceutical University","correspondingAuthor":false,"prefix":"","firstName":"Tomohisa","middleName":"","lastName":"Matsunaga","suffix":""},{"id":607119116,"identity":"cbe252b8-5411-4271-8de4-48fdec41a733","order_by":2,"name":"Takahiro Inoue","email":"","orcid":"","institution":"Tokyo Women's Medical University","correspondingAuthor":false,"prefix":"","firstName":"Takahiro","middleName":"","lastName":"Inoue","suffix":""},{"id":607119117,"identity":"f9bfcc5e-e184-41a2-a0b0-16f5e831cf0c","order_by":3,"name":"Yu Munakata","email":"","orcid":"","institution":"Tokyo Women's Medical University","correspondingAuthor":false,"prefix":"","firstName":"Yu","middleName":"","lastName":"Munakata","suffix":""},{"id":607119118,"identity":"027fcd74-c4d6-4e3e-ac58-72695205779c","order_by":4,"name":"Tetsuro Machimura","email":"","orcid":"","institution":"Tokyo Women's Medical University","correspondingAuthor":false,"prefix":"","firstName":"Tetsuro","middleName":"","lastName":"Machimura","suffix":""},{"id":607119119,"identity":"bff6b897-2cd3-4eb9-b8dd-f0ddbb3545d5","order_by":5,"name":"Tatsuhiko Mori","email":"","orcid":"","institution":"Osaka Medical and Pharmaceutical University","correspondingAuthor":false,"prefix":"","firstName":"Tatsuhiko","middleName":"","lastName":"Mori","suffix":""},{"id":607119120,"identity":"d8caeecf-fe81-42f4-927a-fc3230019673","order_by":6,"name":"Haruhito Azuma","email":"","orcid":"","institution":"Osaka Medical and Pharmaceutical University","correspondingAuthor":false,"prefix":"","firstName":"Haruhito","middleName":"","lastName":"Azuma","suffix":""},{"id":607119121,"identity":"166f5ddb-36fe-47c3-b952-c4310935b9ea","order_by":7,"name":"Norio Hanafusa","email":"","orcid":"","institution":"Tokyo Women's Medical University","correspondingAuthor":false,"prefix":"","firstName":"Norio","middleName":"","lastName":"Hanafusa","suffix":""}],"badges":[],"createdAt":"2026-03-09 07:38:18","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9069749/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9069749/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":105033988,"identity":"98145c42-c192-453e-9557-764294dec7b2","added_by":"auto","created_at":"2026-03-20 07:22:22","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":514752,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9069749/v1/169e0dae-04a7-4909-bc04-bee03b70f666.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Conservative Kidney Management in a Young Patient With Severe Intellectual Disability: Clinical Implications for Kidney Therapy Decision-Making - A Case Report","fulltext":[{"header":"Background","content":"\u003cp\u003eConservative kidney management (CKM) is increasingly recognized as a legitimate treatment pathway for patients with advanced chronic kidney disease (CKD), particularly among older adults and those with substantial comorbidity. Growing evidence suggests that, in selected populations, CKM may provide acceptable survival with reduced treatment burden and hospitalization compared with dialysis-centered care [\u003cspan additionalcitationids=\"CR2\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. To our knowledge, this is among the first reported cases in which CKM was selected for a young adult with lifelong decisional incapacity, a population systematically excluded from existing CKM frameworks.\u003c/p\u003e \u003cp\u003eDespite this progress, existing CKM frameworks largely assume that patients can participate meaningfully in shared decision-making (SDM). In clinical practice, however, nephrologists increasingly encounter patients who lack decisional capacity due to cognitive impairment, neurodevelopmental disorders, or severe psychiatric illness. In such cases, dialysis may be technically feasible yet poorly aligned with patient-centered goals, raising complex ethical and practical challenges.\u003c/p\u003e \u003cp\u003eRecent literature has emphasized the need to reconceptualize SDM in kidney failure as an iterative process that can incorporate surrogate decision-making, uncertainty, and evolving goals of care [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Ethical analyses and clinical practice guidelines further recognize that dialysis initiation is not obligatory when anticipated burdens outweigh potential benefits, and that CKM should be presented as a valid alternative within patient-centered care.\u003c/p\u003e \u003cp\u003eNevertheless, there remains limited guidance on how to operationalize CKM for younger patients with lifelong decisional incapacity, in whom the long-term implications of dialysis-related burden may be particularly profound.\u003c/p\u003e \u003cp\u003eHere, we report a case of a young adult with advanced CKD and severe intellectual disability in whom CKM was selected after extensive multidisciplinary and family-centered deliberation. Beyond the rarity of the clinical scenario, this case highlights a broader and increasingly relevant challenge in nephrology: situations in which renal replacement therapy is technically feasible but unlikely to improve patient-centered outcomes. By describing the ethical reasoning and multidisciplinary process that led to CKM selection, this report aims to provide practical insights for clinicians facing similar decision-making dilemmas.\u003c/p\u003e"},{"header":"Case Presentation","content":"\u003cp\u003eThe patient had progressive CKD secondary to congenital anomalies of the kidney and urinary tract (CAKUT). As the patient had lifelong severe intellectual disability and lacked decisional capacity throughout the clinical course, it was not possible to obtain a first-person patient perspective on the treatment received. Kidney function gradually declined toward kidney failure, with an estimated glomerular filtration rate of approximately 15.9 mL/min/1.73 m\u0026sup2; and ongoing progression, prompting discussions regarding future kidney replacement therapy options. As kidney failure progressed, all modalities of renal replacement therapy (RRT) were systematically considered. Hemodialysis raised concerns regarding vascular access maintenance, treatment-related distress, and the need for physical restraint. Peritoneal dialysis was also evaluated; however, risks related to infection, catheter management, and caregiver burden were deemed substantial. Kidney transplantation was discussed but considered inappropriate because of anticipated difficulties with postoperative care and long-term immunosuppression.\u003c/p\u003e \u003cp\u003eMultiple multidisciplinary conferences were conducted involving nephrologists, nurses, mental health professionals, and social workers, together with the patient\u0026rsquo;s parents who served as surrogate decision-makers. These discussions focused on treatment feasibility, expected treatment burden, and the patient\u0026rsquo;s overall quality of life. The clinical course and stepwise decision-making process are summarized in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. After repeated discussions and confirmation that decisions could be revisited if circumstances changed, CKM was selected as the primary treatment strategy. Home-based medical care and visiting nursing services were introduced early to support symptom management, nutritional care, and caregiver coping, reinforcing CKM as an active and adaptable care pathway rather than a fixed endpoint. The patient remained on conservative kidney management without dialysis initiation and died peacefully at home 35 months later, surrounded by family.\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\u003eTimeline of clinical events and family discussions leading to the selection of CKM\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\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 \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTimeline (Date)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClinical Findings\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eClinical Interventions\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eFamily Discussions/\u003c/p\u003e \u003cp\u003eInterventions\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eOutcomes\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eJanuary 202X,\u003c/p\u003e \u003cp\u003eWeek 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eS-Cr: 3.8 mg/dL\u003c/p\u003e \u003cp\u003eeGFR: 15.9 mL/min/1.73 m\u0026sup2;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eInitial CKM discussion;\u003c/p\u003e \u003cp\u003eRRT options introduced\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eParents expressed initial hesitation regarding dialysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eContinued monitoring planned\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eJanuary 202X,\u003c/p\u003e \u003cp\u003eWeek 4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eS-Cr: 3.9 mg/dL\u003c/p\u003e \u003cp\u003eeGFR: 15.4 mL/min/1.73 m\u0026sup2;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFollow-up outpatient visit to reassess kidney function\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eFamily expressed interest in learning more about CKM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eEducational session on QOL planned\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFebruary 202X,\u003c/p\u003e \u003cp\u003eWeek 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eS-Cr: 4.0 mg/dL\u003c/p\u003e \u003cp\u003eeGFR: 15.0 mL/min/1.73 m\u0026sup2;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCKM and RRT feasibility compared\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eParents leaning toward CKM;\u003c/p\u003e \u003cp\u003eMSW introduced for support\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eDecision-making framework established\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMarch 202X,\u003c/p\u003e \u003cp\u003eWeek 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eS-Cr: 4.2 mg/dL\u003c/p\u003e \u003cp\u003eeGFR: 14.2 mL/min/1.73 m\u0026sup2;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMultidisciplinary team reviewed CKM implementation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSiblings consulted remotely;\u003c/p\u003e \u003cp\u003epsychological counseling provided\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePlan for further discussion at next visit\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eApril 202X,\u003c/p\u003e \u003cp\u003eWeek 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eS-Cr: 4.3 mg/dL\u003c/p\u003e \u003cp\u003eeGFR: 13.8 mL/min/1.73 m\u0026sup2;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDetailed QOL assessment completed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eFamily voiced preference for CKM but requested time to confirm\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNext steps aligned with CKM pathway\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMay 202X,\u003c/p\u003e \u003cp\u003eWeek 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eS-Cr: 4.5 mg/dL\u003c/p\u003e \u003cp\u003eeGFR: 13.2 mL/min/1.73 m\u0026sup2;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFinal pre-CKM review conducted\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eAgreement reached among family members;\u003c/p\u003e \u003cp\u003eMSW facilitated discussions\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eCKM confirmed\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eJune 202X,\u003c/p\u003e \u003cp\u003eWeek 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eS-Cr: 4.7 mg/dL\u003c/p\u003e \u003cp\u003eeGFR: 12.6 mL/min/1.73 m\u0026sup2;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHome care framework initiated\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eParents trained for home-based end-of-life care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eCKM implementation initiated\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eJuly 202X,\u003c/p\u003e \u003cp\u003eWeek 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eS-Cr: 4.85 mg/dL\u003c/p\u003e \u003cp\u003eeGFR: 12.1 mL/min/1.73 m\u0026sup2;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCKM progress evaluation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eFamily satisfaction assessed;\u003c/p\u003e \u003cp\u003eanticipatory grief support continued\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eCKM ongoing;\u003c/p\u003e \u003cp\u003efamily support ongoing\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"5\"\u003eCKM, conservative kidney management; eGFR, estimated glomerular filtration rate (mL/min/1.73 m\u0026sup2;);\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"5\"\u003eMSW, medical social worker; QOL, quality of life; RRT, renal replacement therapy; S-Cr, serum creatinine (mg/dL).\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe present case illustrates that chronological age alone is an insufficient criterion for kidney therapy decision-making. A growing body of evidence suggests that conservative kidney management (CKM) can provide acceptable survival while reducing symptom burden and hospitalization in selected populations, supporting a shift away from dialysis-centered default frameworks toward individualized, goal-concordant care [\u003cspan additionalcitationids=\"CR2\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eA central challenge in this case was the patient\u0026rsquo;s lifelong decisional incapacity. Contemporary models of shared decision-making (SDM) emphasize patient preferences and values; however, these models are not directly applicable when patients cannot meaningfully participate in deliberation. In such circumstances, decision-making must be reconceptualized as a surrogate- and best-interest\u0026ndash;based process rather than an autonomy-driven one. Recent literature emphasizes that SDM in kidney failure should be viewed as iterative and flexible, incorporating clinical uncertainty, reversibility of decisions, and the evolving perspectives of families and care teams [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. The stepwise multidisciplinary discussions summarized in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e illustrate how ethically grounded decisions can be achieved through repeated dialogue and shared clinical reflection.\u003c/p\u003e \u003cp\u003eImportantly, dialysis initiation is not obligatory when it is unlikely to provide meaningful benefit. Clinical guidelines and ethical analyses explicitly recognize that forgoing dialysis may be appropriate when anticipated burdens outweigh potential gains in survival or quality of life [\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. In the present case, although renal replacement therapy was technically feasible, all modalities were expected to impose substantial physical distress, disruption of daily routines, and increased caregiver burden. Under such circumstances, CKM represented a proportionate and ethically defensible approach.\u003c/p\u003e \u003cp\u003eCKM should not be interpreted as the absence of treatment. Rather, it represents an active clinical pathway integrating symptom management, psychosocial support, and anticipatory care planning. Decision aids and structured communication strategies may facilitate these discussions and improve engagement of patients and families in care planning [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. However, surveys continue to demonstrate substantial variability in CKM implementation across nephrology practices [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Normalizing CKM as a standard component of kidney care remains an important priority. An existential perspective further clarifies the rationale for CKM in patients with lifelong decisional incapacity. Patients with advanced CKD often experience distress related not only to physical symptoms but also to threats to dignity, identity, and meaning [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. When patients cannot articulate preferences, preserving continuity of lived experience and minimizing suffering that the patient could neither comprehend nor communicate may become ethically salient priorities. These considerations align with meaning-centered approaches developed in serious illness care, which emphasize preserving dignity and coherence of life even when curative treatment is not possible [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eSurrogate decision-making also places substantial emotional and psychological burden on families. Systematic reviews demonstrate that acting as a surrogate is associated with anxiety, decisional conflict, and long-term regret [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Accordingly, clinicians should recognize that decision-making support for families represents a core component of kidney care rather than a peripheral task. Finally, this case resonates with broader discussions about the goals of medicine at the limits of life-sustaining treatment. Ultimately, the role of clinicians is not solely to prolong life but to support care that remains meaningful and proportionate to the patient\u0026rsquo;s circumstances. Framing CKM as an active, dignity-centered form of care may help clinicians move beyond reflexive dialysis initiation and toward more nuanced, patient-centered decision-making.\u003c/p\u003e\n\u003ch3\u003eStrengths and Limitations\u003c/h3\u003e\n\u003cp\u003eThis case has several strengths. The stepwise multidisciplinary decision-making process was documented prospectively and is presented with sufficient clinical detail to be reproducible in other settings. The 35-month follow-up period provides rare longitudinal insight into the natural course of advanced CKD managed without dialysis in a young patient with lifelong decisional incapacity. Furthermore, the integration of ethical, psychosocial, and existential perspectives offers a multidimensional framework that extends beyond conventional clinical reporting.\u003c/p\u003e \u003cp\u003eNevertheless, several limitations should be acknowledged. First, as a single-case report, the findings cannot be generalized, and selection bias cannot be excluded. Second, formal quality-of-life or symptom-burden assessments using validated instruments were not performed, in part because the patient's cognitive impairment precluded self-report. Third, the cultural and healthcare-system context of Japan \u0026mdash; where family-centered decision-making is prominent and home-based end-of-life care is increasingly supported \u0026mdash; may limit direct applicability to settings with different legal frameworks or resource availability. Finally, the identity of the patient has been fully anonymized, which, while necessary to protect privacy, precludes verification of clinical details by external reviewers.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis case demonstrates that conservative kidney management can be an ethically and clinically appropriate option for younger patients with advanced CKD who lack decisional capacity. Kidney therapy decisions should extend beyond age and technical feasibility to incorporate treatment burden, quality of life, and the preservation of a coherent lived experience. Integrating surrogate-based decision-making frameworks, evidence-informed CKM practices, and an existentially informed perspective may help guide kidney care for vulnerable populations not adequately addressed by traditional dialysis-centered models.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval was waived by the Institutional Review Board of Tokyo Women's Medical University because this report describes a single clinical case without experimental intervention.\u003c/p\u003e\n\u003cp\u003eThis study was conducted in accordance with the ethical standards of the institutional research committee and with the 1964 Declaration of Helsinki and its later amendments.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWritten informed consent for publication of this case report was obtained from the patient’s legal guardian, who served as the surrogate decision-maker.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research received no specific grant from any funding agency.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors’ contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eH.H. conceived the study and drafted the manuscript. T.M., T.I., Y.M., T.Mac., and T.Mo. contributed to patient care and data collection. H.A. and N.H. supervised the project and critically revised the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAI-assisted language tools were used for grammar and style editing.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data underlying this article will be shared on reasonable request to the corresponding author.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eO\u0026rsquo;Connor NR, Kumar P. Conservative management of end-stage renal disease without dialysis: a systematic review. J Palliat Med. 2012;15(2):228-35. doi:10.1089/jpm.2011.0207. \u003c/li\u003e\n\u003cli\u003eBund\u0026oacute; D, Cunillera O, Arbiol-Roca A, et al. Final Stage of Chronic Kidney Disease with Conservative Kidney Management or Renal Replacement Therapy: A Primary-Care Population Study. J Clin Med. 2023;12(14):4602. doi:10.3390/jcm12144602. \u003c/li\u003e\n\u003cli\u003eChou A, et al. Survival, symptoms and hospitalization of older patients with advanced chronic kidney disease managed without dialysis. Nephrol Dial Transplant. 2023;38(2):405-13. doi:10.1093/ndt/gfac154. \u003c/li\u003e\n\u003cli\u003eSaeed F, Jawed A, Gazaway S, Hall RK, Klein-Fedyshin M, Bowling B, Schell JO. Supporting Shared Decision-Making in Life-Altering Kidney Therapy Decisions for Older Adults: A Review. JAMA Intern Med. 2025;185(12):1479-88. doi:10.1001/jamainternmed.2025.5554. \u003c/li\u003e\n\u003cli\u003eKanbay M, Basile C, Battaglia Y, et al. Shared decision making in elderly patients with kidney failure. Nephrol Dial Transplant. 2024;39(5):742-51. doi:10.1093/ndt/gfad211. \u003c/li\u003e\n\u003cli\u003eMoss AH. Revised Dialysis Clinical Practice Guideline Promotes More Informed Decision-Making. Clin J Am Soc Nephrol. 2010;5(12):2380-83. doi:10.2215/CJN.07150810. \u003c/li\u003e\n\u003cli\u003eZisman-Ilani Y, Rhee CM, Al Ammary F, Kalantar-Zadeh K. Shared decision making and decision aids in the management of kidney disease and renal replacement treatment options. Curr Opin Nephrol Hypertens. 2026 Jan 1;35(1):13-20. doi:10.1097/MNH.0000000000001140. Epub 2025 Nov 21.\u003c/li\u003e\n\u003cli\u003e\u003cstrong\u003eSchwartz AR et al.\u003c/strong\u003e, 2025 U.S. Department of Veterans Affairs and U.S. Department of Defense Clinical Practice Guideline for the Primary Care Management of Chronic Kidney Disease. Ann Intern Med. 2025 Dec 30. doi: 10.7326/ANNALS-25-03499. \u003c/li\u003e\n\u003cli\u003eChotivatanapong J. et al. A National Survey of Conservative Kidney Management Practices for Patients Who Forgo RRT. Kidney360. 2024;5(3):363-9. doi:10.34067/KID.0000000000000367. \u003c/li\u003e\n\u003cli\u003eWong SPY, Oestreich T, Prince DK, Curtis JR. A Patient Decision Aid About Conservative Kidney Management in Advanced Kidney Disease: A Randomized Pilot Trial. Am J Kidney Dis. 2023;82(2):179-88. doi:10.1053/j.ajkd.2022.12.007.\u003c/li\u003e\n\u003cli\u003eDavison SN, Jhangri GS. Existential and supportive care needs among patients with chronic kidney disease. J Pain Symptom Manage. 2010;40(6):838-43. doi:10.1016/j.jpainsymman.2010.03.015. \u003c/li\u003e\n\u003cli\u003eDavison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5(2):195-204. doi:10.2215/CJN.05960809. \u003c/li\u003e\n\u003cli\u003eBreitbart W, Poppito S, Rosenfeld B, et al. Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. J Clin Oncol. 2012;30(12):1304-9. doi:10.1200/JCO.2011.36.2517. \u003c/li\u003e\n\u003cli\u003eWendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336-46. doi:10.7326/0003-4819-154-5-201103010-00008. \u003c/li\u003e\n\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-nephrology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bnep","sideBox":"Learn more about [BMC Nephrology](http://bmcnephrol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bnep/default.aspx","title":"BMC Nephrology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Conservative kidney management, Advanced chronic kidney disease, Intellectual disability, Decisional incapacity, Shared decision-making, Ethics","lastPublishedDoi":"10.21203/rs.3.rs-9069749/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9069749/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eConservative kidney management (CKM) is increasingly recognized as a patient-centered treatment pathway for individuals with advanced chronic kidney disease (CKD). However, most CKM frameworks assume that patients can participate in shared decision-making, and little guidance exists for younger patients with lifelong decisional incapacity.\u003c/p\u003e\u003ch2\u003eCase presentation\u003c/h2\u003e \u003cp\u003eWe report the case of a young adult with advanced CKD secondary to congenital anomalies of the kidney and urinary tract and severe intellectual disability who lacked decisional capacity. As kidney failure progressed, all modalities of kidney replacement therapy, including hemodialysis, peritoneal dialysis, and kidney transplantation, were considered. However, concerns regarding treatment feasibility, caregiver burden, and anticipated impact on quality of life led to the selection of CKM after repeated multidisciplinary discussions involving clinicians and family members. Home-based medical care and visiting nursing services were introduced to support symptom management and family caregivers. The patient remained on CKM without dialysis initiation and died peacefully at home 35 months later, surrounded by family.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThis case highlights the ethical and clinical challenges of kidney therapy decision-making in patients with severe intellectual disability who cannot participate in shared decision-making. CKM may represent an ethically and clinically appropriate care pathway when dialysis is technically feasible but unlikely to improve patient-centered outcomes.\u003c/p\u003e","manuscriptTitle":"Conservative Kidney Management in a Young Patient With Severe Intellectual Disability: Clinical Implications for Kidney Therapy Decision-Making - A Case Report","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-17 18:55:21","doi":"10.21203/rs.3.rs-9069749/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-04-08T09:24:54+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-07T12:19:26+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-30T03:23:55+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-16T17:52:20+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"214580743267505555742112561921075756828","date":"2026-03-14T10:54:27+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"306264851497951469101908744689797287319","date":"2026-03-14T09:15:21+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"50888569200078652189653884825956587032","date":"2026-03-12T10:33:21+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-03-12T09:11:13+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-03-12T05:52:21+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-11T09:59:00+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-11T09:58:11+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Nephrology","date":"2026-03-09T07:22:36+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-nephrology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bnep","sideBox":"Learn more about [BMC Nephrology](http://bmcnephrol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bnep/default.aspx","title":"BMC Nephrology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"40c39da3-ac4a-4844-bf41-6f09690cc039","owner":[],"postedDate":"March 17th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-16T12:08:31+00:00","versionOfRecord":[],"versionCreatedAt":"2026-03-17 18:55:21","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9069749","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9069749","identity":"rs-9069749","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}