Experiences of Advance Care Planning in Epileptic Patients with Intellectual Disability

ABSTRACT

Introduction: Epileptic patients have a higher risk of death than healthy individuals. Advance care planning (ACP) is also important for epileptic patients, but is not well recognized. We experienced two cases in which ACP was performed by family and medical staff for epileptic patients with intellectual disability. Case1: The patient was a 29-year-old male. It was important to continue spending his daily life as he currently did. Although his family wanted to provide palliative care at the end of life, there were no decisions about which medical interventions may not work at his end of life. It was decided that the family and medical staff would continue to make shared decision making. Case2: The patient was an 18-year-old female. It was important to continue spending her daily life as she currently did. Her family and medical team decided to provide palliative care at the end of life. Based on the opinions of the family members in both cases, the importance and widespread use of ACP in epileptic patients were obtained. Conclusions: ACP enabled families and medical staff to make shared decisions about what is best for epileptic patients with intellectual disability. ACP for epileptic patients seems to need to be promoted.