1. Three Million Decisions: Achievements of the Decisions on Life-Sustaining Treatment Act and Next Steps

In order to safeguard patients’ right to self-determination and dignity, Decisions on Life-Sustaining Treatment Act came into force in 2018. Since then, Korean society has made substantial progress toward discussing the end-of-life more openly and fostering a culture of thoughtful reflection on end-of-life care. As the system has become more firmly established, the number of cases in which life-sustaining treatment(LST) has been withdrawn or withheld has steadily increased, and the number of individuals who have registered an Advance Directive on Life-Sustaining Treatment has surpassed three million. Building on these achievements, it is now time to address the limitations revealed in the course of implementing the system and to further advance the framework so that patients’ wishes can be more fully realized in clinical settings.

2. Refusal Intentions at 84.1% vs. Actual Withdrawal at 16.7%: The Gap Between Patient Preferences and clinical Reality

Among adults aged 65 and older, 84.1% report that they would refuse LST in situations with no prospect of recovery. In contrast, only 16.7% of deceased individuals in this age group actually had LST withheld or withdrawn. This discrepancy suggests that a substantial number of older patients undergo life-sustaining interventions until the very end of life, despite their preferences regarding LST.

3. A 6.4% Annual Increase in Patients Receiving LST: Complex Challenges Across the Entire Decision-Making Process

The number of patients receiving LST has increased rapidly, at an average annual rate of 6.4% between 2013 and 2023. While this growth is partly attributable to the broader trend of population aging, it also reflects the combined effects of institutional and structural factors that constrain patient self-determination throughout the entire decision-making process.

① Advance Discussion Stage

Lack of discussions about death: A cultural reluctance to engage in conversations about death leads to a passive attitude toward documenting end-of-life treatment preferences in advance. As a result, patients’ underlying wishes are often not adequately communicated to family members or medical professionals. The absence of open dialogue about death also contributes to low awareness of the Decisions on Life-Sustaining Treatment Act.

Constraints on individual expression of preferences: Findings from the authors’ own survey indicate substantial demand for reflecting individuals’ detailed and differentiated preferences in the decision-making process for LST. Nevertheless, the current Advance Directive on Life-Sustaining Treatment is structured to allow only a binary, all-or-nothing choice regarding the withdrawal of LST, making it difficult to capture differences in values across patients or their specific preferences regarding each LST intervention. In addition, institutions authorized to provide counseling, prepare, and register Advance Directives are limited to a small number of designated entities—such as general hospitals, public health centers, and local branches of the National Health Insurance Service—and, in principle, require in-person visits. This limited accessibility poses significant barriers, particularly for older adults with mobility constraints and for working individuals with limited time availability.

② Medical Institution Selection Stage

Limited accessibility to Institutional Ethics Committees and Shared Ethics Committees: Under the current system, the establishment of an Institutional Ethics Committee is a prerequisite for the withdrawal of LST. In practice, however, such committees are concentrated primarily in tertiary general hospitals in the Seoul metropolitan area and in a small number of large hospitals, while installation rates remain very low among small and medium-sized hospitals and nursing hospitals. To address this limitation, Shared Ethics Committees have been introduced. Nevertheless, only 13 such committees nationwide are responsible for supporting approximately 200 contracted medical institutions, often with limited personnel, resulting in substantial staffing and budgetary burdens. As a consequence, significant blind spots persist in which patients and their families in regional small and medium-sized hospitals and long-term care facilities face practical difficulties in making use of the Decisions on Life-Sustaining Treatment Act.

③ Determination Stage of the End-of-Life Process

Difficulties in determining the end-of-life process: Under the Decisions on Life-Sustaining Treatment Act, the withdrawal of LST is permitted only when a patient is determined to be in the end-of-life process, defined as a condition in which recovery is impossible and death is imminent. In practice, however, it is medically difficult to predict the timing of death for most conditions, and determinations of whether a patient has entered the end-of-life process inevitably involve a substantial degree of subjectivity. As a result, life-sustaining interventions are often continued even for patients with no prospect of recovery. Indeed, among cases in which LST was withdrawn within one month prior to death, approximately 40% made this decision only during the final week of life. These patients received an average of 6.8 life-sustaining interventions during that one-month period.

④ Post–Withdrawal Care Stage

Insufficient end-of-life care infrastructure: The infrastructure for end-of-life care to support patients after the withdrawal of LST remains insufficient. As of 2025, there are only 103 inpatient hospice specialized institutions nationwide, with a heavy concentration in the Seoul metropolitan area, resulting in substantial regional disparities in access. Consequently, a large gap persists between the proportion of patients who express a desire to use hospice care and the actual utilization rate. This shortfall functions as a structural constraint on patients’ and families’ ability to choose the withdrawal of LST and to transition to hospice or palliative care.

4. Patient Suffering, Family Burden, and Sustainability

Life-sustaining treatment that diverges from patients’ preferences has wide-ranging consequences for patients, their families, and society as a whole.

① Substantial Physical Suffering for Patients

LST entails significant physical suffering for patients. According to the Life-Sustaining Treatment Distress Index constructed in this paper, the average level of physical suffering experienced by patients receiving LST is approximately 3.5 times greater than the maximum pain associated with a single disease or a single medical intervention. For patients in the top 20% of the index distribution, the level of suffering is far more severe, reaching approximately 12.7 times this benchmark. These findings indicate that a specific subgroup of patients exposed to intensive interventions bears an exceptionally heavy physical burden.

② Escalating Economic Burdens on Patients and Families

Medical expenditures incurred by patients receiving LST during the year preceding death—commonly referred to as end-of-life medical costs—have increased rapidly and may impose substantial burdens, particularly on vulnerable households, when considered in relation to annual household income and net wealth. The average out-of-pocket end-of-life medical expenditure per patient receiving LST increased from KRW 5.47 million in 2013 to KRW 10.88 million in 2023, growing at an average annual rate of 7.2% and nearly doubling over the decade. This amount corresponds to approximately 40% of the median household income among households headed by individuals aged 65 and older. Because incomes are substantially lower among households in the lower income brackets, end-of-life medical costs are likely to impose a particularly heavy financial burden on low-income, asset-constrained households. In addition to medical expenses, patients’ families may face further economic burdens arising from caregiving-related direct and indirect costs..

③ Deepening Structural Imbalances in the End-of-Life Care System

Korean society currently faces a structural imbalance in which substantial medical resources are devoted to LST that does not align with patients’ preferences, while resources remain relatively scarce for high-demand end-of-life care services. If current trends persist, this imbalance is likely to deepen further. By contrast, if LST were provided in closer accordance with patients’ preferences, a portion of social medical resources—including National Health Insurance expenditures currently allocated to LST—could be reallocated to high-demand end-of-life care services such as hospice and palliative care and caregiving support. At the same time, patients and their families could redirect part of their out-of-pocket spending away from LST toward end-of-life care. Such a reallocation would enable patients to shape the final stage of life in accordance with their wishes and contribute to improvements in the quality of end-of-life care.

5. Measures to Strengthen the Life-Sustaining Treatment Decision System

Based on the foregoing diagnosis, this paper proposes four directions for institutional reform aimed at ensuring the effective protection of patients’ right to self-determination.

① Strengthening Public Awareness and Expanding Pathways for Participation

Public communication and education efforts tailored to different stages of the life course are needed to ensure that the public accurately understands the purpose and procedures of the Decisions on Life-Sustaining Treatment Act. It would also be worth considering incentives that provide tangible benefits—such as expanded coverage of health checkups or reductions in National Health Insurance premiums—for individuals who complete an Advance Directive on Life-Sustaining Treatment. In addition, accessibility could be substantially improved by enabling individuals to consult with medical professionals at their regular community clinics to prepare and register advance directives, while also expanding participation through digital channels, including online platforms.

② Strengthening Patient Self-Determination through a “Personalized” Advance Directive on Life-Sustaining Treatment

To more accurately reflect patients’ specific preferences and values in clinical settings, the introduction of a more “personalized” Advance Directive on Life-Sustaining Treatment is necessary. The revised form could include ⑴ selective refusal of legally defined LSTs, ⑵ preferences regarding artificial nutrition and hydration, which are closely related to life preservation but are not currently classified as legally defined LSTs, ⑶ intentions regarding organ donation, and ⑷ the designation of a healthcare proxy for medical decision-making. In addition, by providing space for patients to freely describe their “wishes,” such as preferred place of death and modes of care, the form could enable individuals to reflect in advance on the end-of-life process and to record their personal preferences in greater detail. At the same time, because issues such as organ donation and the withdrawal of artificial nutrition and hydration may require further societal deliberation, a phased approach could be considered, beginning with the incorporation of treatment-specific options for procedures already defined as legally recognized LSTs under the Decisions on Life-Sustaining Treatment Act.

③ Addressing Institutional Blind Spots and Timing of Implementation

To ensure that patients can fully exercise their right to self-determination across all medical institutions—including small and medium-sized hospitals and nursing hospitals—it is necessary to strengthen institutional and financial support. In addition, to protect patients who become unable to express their wishes without having completed an Advance Directive on Life-Sustaining Treatment, discussions should proceed in parallel on introducing a healthcare proxy system that allows individuals to designate, in advance, a trusted person to make medical decisions on their behalf. Furthermore, as the Decisions on Life-Sustaining Treatment Act becomes increasingly established in practice, it may be appropriate to initiate broader societal deliberation on whether to adjust the timing at which the withdrawal of LST is permitted, which is currently limited to the end-of-life process.

④ Ensuring Continuity of Care After the Withdrawal of LST

To prevent the withdrawal of LST from becoming a discontinuous medical act, it is necessary to establish an end-of-life care system in which palliative care, psychological counseling, and family support are provided seamlessly after withdrawal. To this end, the capacity of hospice and palliative care institutions should be expanded, and systems for coordination and information sharing between these institutions and general medical providers should be strengthened, so that patients can transition smoothly to appropriate facilities and services.

6. Conclusion and Future Considerations

The goal of improving the LST system is not to reduce LST per se, but to support individuals in sufficiently reflecting in advance on how they wish to bring their lives to a close in accordance with their own values, and to ensure through institutional safeguards that such self-determination is respected until the very end. Future discussions on LST should therefore focus on seeking social consensus on how to reconcile respect for patient self-determination with the value of respect for life. In addition, although not directly addressed in this paper, end-of-life medical issues faced by patients who fall into the blind spots of the current system also constitute an important task for future discussion and research.