Retrospective study on decision making for end-of-life care in terminal phase and end of life for patients with hematologic malignancy

ABSTRACT

<b>Purpose and Methods</b>: Based on the medical records of 56 cases of death from hematologic malignancy, we investigated who decided end-of-life care in the terminal phase and at the end of life, what factor discourages patients from making self-decisions and whether an advance directive about end-of-life care is present. We then extracted the story of the family in decision-making for end-of-life care. <b>Results</b>: In 45 cases, the patient decided end-of-life care at the terminal phase. In 11 cases, the family made the decision on behalf of the patient. In the terminal phase, the factor that most discouraged patients from making a self-decision was dementia, but at the end of life the factor was symptomatic worsening in all cases. In 49 cases, the family decided end-of-life care at the end of life on behalf of the patient. Regarding end-of-life care policy, 49 cases hoped for "do not attempt resuscitation (DNAR)" and 7 cases hoped for life-support treatment. Advance directives were confirmed in 7 cases. Mental conflict about end-of-life care policy was perceived from the family's story. Despite small number of cases, it was suggested that an advance directive reduced psychological burden on the family. <b>Conclusion</b>: It is difficult for the patient to make self-decisions about end-of-care life at the end of life as compared to end-of-care life in the terminal phase. Further studies are required to assess the efficacy of an advance directive.