维持生命治疗，谁的决定：患者偏好与医疗现实之间的差异及其政策影响

1.Three Million Decisions: Achievements of the Decisions on Life-Sustaining Treatment Inorder to safeguard patients’right to self-determination and dignity,Decisions onLife-Sustaining Treatment Act came into force in 2018. Since then, Korean society hasmadesubstantial progress toward discussing the end-of-life more openly andfosteringa culture of thoughtful reflection on end-of-life care.As the system has 2. Refusal Intentions at 84.1% vs. Actual Withdrawal at 16.7%: The Gap Between Patient Amongadults aged 65 and older,84.1%report that they would refuse LST insituationswith no prospect of recovery.In contrast,only 16.7%of deceased 3. A 6.4% Annual Increase in Patients Receiving LST: Complex Challenges Across the ① Advance Discussion Stage Lack of discussions about death:A cultural reluctance to engage in conversationsabout death leads to a passive attitude toward documenting end-of-life treatment Constraints on individual expression of preferences: Findings from the authors’ ownsurveyindicatesubstantialdemandforreflectingindividuals’detailedanddifferentiatedpreferences in the decision-making process for LST.Nevertheless,thecurrent Advance Directive on Life-Sustaining Treatment is structured to allow only abinary,all-or-nothing choice regarding the withdrawal of LST,making it difficult to ② Medical Institution Selection Stage LimitedaccessibilitytoInstitutionalEthicsCommitteesandSharedEthicsCommittees:Under the current system, the establishment of an Institutional Ethics remainvery low among small and medium-sized hospitals and nursing hospitals.Toaddress this limitation,Shared Ethics Committees have been introduced.Nevertheless,only 13 such committees nationwide are responsible for supporting ③ Determination Stage of the End-of-Life Process Difficultiesin determining the end-of-life process:Under the Decisions onLife-SustainingTreatment Act,the withdrawal of LST is permitted only when apatientis determined to be in the end-of-life process,defined as a condition inwhichrecovery is impossible and death is imminent.In practice,however,it is ④ Post–Withdrawal Care Stage Insufficient end-of-lifecare infrastructure:The infrastructure for end-of-life care tosupport patients after the withdrawal of LST remains insufficient. As of 2025, thereareonly 103 inpatient hospice specialized institutions nationwide,with a heavy 4. Patient Suffering, Family Burden, and Sustainability Life-sustainingtreatment that diverges from patients’preferences has wide-ranging ① Substantial Physical Suffering for Patients LSTentailssignificantphysicalsufferingforpatients.AccordingtotheLife-Sustaining Treatment Distress Index constructed in this paper, the average levelofphysical suffering experienced by patients receiving LST is approximately 3.5 ② Escalating Economic Burdens on Patients and Families Medical expenditures incurred by patients receiving LST during the year precedingdeath—commonlyreferred to as end-of-life medical costs—have increased rapidlyandmay impose substantial burdens,particularly on vulnerable households,whenconsideredin relation to annual household income and net wealth.The average ③ Deepening Structural Imbalances in the End-of-Life Care System Koreansociety currently faces a structural imbalance in which substantial medicalresources are devoted to LST that does not align with patients’ preferences, whileresourcesremain relatively scarce for high-demand end-of-life care services.Ifcurrent trends persist, this imbalance is likely to deepen further. By contrast, if LST shapethe final stage of life in accordance with their wishes and contribute to 5. Measures to Strengthen the Life-Sustaining Treatment Decision System Basedon the foregoing diagnosis,this paper proposes four directions for institutional ① Strengthening Public Awareness and Expanding Pathways for Participation Public communication and education efforts tailored to different stages of the lifecourseare needed to ensure that the public accurately understands the purposeand procedures of the Decisions on Life-Sustaining Treatment Act. It would also be ② Strengthening Patient Self-Determination through a “Personalized” Advance Tomore accurately reflect patients’specific preferences and values in clinicalsettings,theintroductionofamore“personalized”AdvanceDirectiveonLife-Sustaining Treatment is necessary. The revised form could include ⑴ selectiverefusalof legally defined LSTs,⑵preferences regarding artificial nutrition andhydration,which are closely related to life preservation but are not currently ③ Addressing Institutional Blind Spots and Timing of Implementation To ensure that patients can fully exercise their right to self-determination across allmedicalinstitutions—including small and medium-sized hospitals and nursinghospitals—itis necessary to strengthen institutional and financial support.Inaddition,to protect patients who become unable to express their wishes without ④ Ensuring Continuity of Care After the Withdraw