2020 Volume 52 Issue 6 Pages 397-402
Objective: There are no guidelines on the end of life care for patients with Duchenne muscular dystrophy (DMD) in Japan. We describe our experience of advance care planning (ACP) in three patients with DMD. Methods: We conducted conversations with DMD patients and their families according to the ACP steps provided by the Ministry of Health, Labour and Welfare and the four quadrant-approach to clinical ethics, using a multidisciplinary team approach. Results: Patient 1 was a 22-year-old male to whom it was important to continue spending his daily life as he currently did. He desired palliative care and to die naturally. Patient 2 was a 23-year-old male who wanted the freedom to do whatever he chose. He too desired palliative care and to die naturally. During the ACP, he developed nonsustained ventricular tachycardia, for which he decided to undergo cardioverter defibrillator implantation. Patient 3 was a 22-year-old male to whom it was important to face himself. He learned to accept his DMD with ACP support, and opted to receive noninvasive positive pressure ventilation. He ultimately decided that he wanted to receive palliative care and die naturally. All the family members agreed with their sons’ choices. Our multidisciplinary team also respected the decisions of the patients and their families. Conclusions: ACP in cooperation with a multidisciplinary team enabled us to understand the will and decision by DMD patients and their families at the end of life.
