神経治療学
Online ISSN : 2189-7824
Print ISSN : 0916-8443
ISSN-L : 2189-7824
シンポジウム8:地域で支える神経難病診療体制の現状と展望:患者・家族の意思決定支援へのかかわり
在宅医療における患者意思決定のための寄り添い
吉野 英
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ジャーナル フリー

2020 年 37 巻 4 号 p. 584-587

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It is a crucial decision making for ALS patients whether or not receive tracheostomy and artificial ventilation (TPPV). ALS patients are referred from university hospital to home care doctor when the patient can no longer visit the hospital because of deterioration of motor function. Although patients did not wish to receive TPPV when interviewed at university hospital, many of them are still wondering for TPPV at home.

During 12 years at Yoshino Neurology Clinic, author has been involved for decision making process for TPPV in 169 ALS patients. Among these, 80 patients received TPPV. ALS patients who received TPPV are younger than those who did not receive TPPV, more frequently use facility for care, and more frequently accompanied by spouse.

For decision making process, it is important to correlate with multidiscipline staffs including visiting nurses, care manager, rehabilitation staffs. It is also important to divide enough home care support for patients to make decision under better QOL. Finally, we need to interview continuously as patients usually could not decide their mind until the last moment.

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