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Background <p>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 a lifelong severe intellectual disability who lack decision-making capacity.</p> Case presentation <p>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.</p> Conclusions <p>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 quality of life, minimize treatment burden, or align with the patient’s best interests as determined through multidisciplinary deliberation.</p>

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Conservative kidney management in a young patient with severe intellectual disability: clinical implications for kidney therapy decision-making - a case report

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年6月25日

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  • Hajime Hirano,
  • Tomohisa Matsunaga,
  • Takahiro Inoue,
  • Yu Munakata,
  • Tetsuro Machimura,
  • Tatsuhiko Mori,
  • Haruhito Azuma,
  • Norio Hanafusa

摘要

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 a lifelong severe intellectual disability who lack decision-making capacity.

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 quality of life, minimize treatment burden, or align with the patient’s best interests as determined through multidisciplinary deliberation.