Issues and implications of the life-sustaining treatment decision act: comparing the data from the survey and clinical data of inpatients at the end-of-life process

Abstract

Abstract Background Health professionals had difficulty choosing the right time to discuss life-sustaining treatments (LSTs) since the Korean Act was passed in 2018. Objective This study aimed to understand how patients decide to undergo LSTs in clinical practice and to compare the perceptions of these decisions among health professionals, patients, and families with suggestions to support the self-directed decisions of patients. Research design A retrospective observational study with electronic medical records (EMRs) and a descriptive survey was used. Methods The data obtained from the EMRs included all adult patients who died in end-of-life care at a university hospital in 2021. We also conducted a survey of 214 health professionals and 100 patients and their families (CNUH IRB approval no. 2022-07-006). Results Based on the EMR data of 916 patients in end-of-life care, 78.4% signed do-not-attempt-resuscitation consents, 5.6% completed the documents for LSTs, and 10.2% completed both forms. LST decisions were mostly made by family members (81.5%). Most survey participants agreed that meaningless LSTs should be suspended, and the decision should be made by patients. Patients and family members (42–56%) and health professionals (56–58%) recommended discussing LST suspension when the patient is still conscious but with predicted deterioration of their condition. The suffering experienced by the patient was considered to be a priority by most patients (58%) and families (54%) during the decision-making process, while health professionals considered “the possibility of the patient’s recovery” to be the highest priority (43–55%). Conclusions There is still a significant discrepancy in the perceptions of LST decisions among health professionals, patients, and their families despite high awareness of the Act. This situation makes it challenging to implement the Act to ensure respect for the rights of patients to self-determination and dignified end-of-life. Further effort is needed to improve the awareness of LSTs and to clarify the ambiguity of document preparation timing.

Keywords

• End-of-life care
• Life-sustaining treatment withhold and withdrawal
• Do-not-attempt-resuscitation orders