Yotani Nobuyuki, Kizawa Yoshiyuki, Shintaku Haruo
Department of Palliative Medicine, National Centre for Child Health and Development, Tokyo, Japan.
Department of Palliative Medicine, Kobe University School of Medicine, Kobe, Japan.
BMJ Paediatr Open. 2017 Sep 28;1(1):e000102. doi: 10.1136/bmjpo-2017-000102. eCollection 2017.
To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists.
Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously.
In total, 186 paediatric neurologists were analysed. If the patient's prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as 'do not attempt resuscitation' orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients' families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients' families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient's prognosis was >1 year.
About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
评估儿科神经科医生对患有危及生命疾病的青少年患者进行预立医疗计划的当前态度和障碍。
横断面研究。采用一份自填式问卷来评估预立医疗计划的实施情况、预立医嘱以及针对患有危及生命疾病的青少年患者进行预立医疗计划的障碍。对日本所有获得董事会认证的儿科神经科医生进行了调查，并对那些有照顾具有决策能力的青少年患者经验的医生进行了分析。我们将结果与之前报道的儿科血液科医生的结果进行了比较。
总共分析了186名儿科神经科医生。如果患者的预后小于3个月，只有约30%的儿科神经科医生报告曾与患者讨论过诸如“不进行心肺复苏”医嘱（28%）和使用呼吸机（32%）等问题，而超过70%的医生确实与患者家属讨论过这些话题。约一半的儿科神经科医生没有在患者临终时讨论预立医嘱，而超过75%的医生与患者家属讨论过预立医嘱。与儿科血液科医生相比，如果患者的预后大于1年，儿科神经科医生与患者进行的临终讨论更多，例如治疗和护理将在何处进行、不进行心肺复苏医嘱以及呼吸机的使用。
约一半或更少的儿科神经科医生与患有危及生命疾病的青少年患者讨论预立医疗计划和预立医嘱，即使患者的预后小于3个月。他们倾向于与家属而非患者本人更多地讨论预立医疗计划和预立医嘱。
