Joseph's Wishes: Ethical Decision-Making in Duchenne Muscular Dystrophy

被引：5

作者：

Penner, Leigh ^{[1
]}

Cantor, Rabbi Mollie ^{[1
]}

Siegel, Linda ^{[2
]}

机构：

[1] Mt Sinai Kravis Childrens Hosp, New York, NY USA

[2] Montefiore Med Ctr, Albert Einstein Coll Med, Dept Pediat, Bronx, NY 10467 USA

来源：

MOUNT SINAI JOURNAL OF MEDICINE | 2010年 / 77卷 / 04期

关键词：

decision-making; Duchenne muscular dystrophy; ethics; palliative care; pediatric; CARE; END; ADOLESCENT; SURVIVORS;

D O I：

10.1002/msj.20196

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

The death of a child is an uncommon occurrence and can be difficult for families to accept. Attempts by the healthcare team to discuss end-of-life issues can be so upsetting to families that they refuse to participate in the discussion. Even with diseases where an early death can be anticipated, such as Duchenne muscular dystrophy, the family is often reluctant to discuss end-of-life issues when the patient is relatively healthy, preferring to focus on the current health issues. In this article we discuss what happens when there are disagreements between the patient and family and the needs of both must be taken into consideration. Mt Sinai J Med 77:394-397, 2010. (C) 2010 Mount Sinai School of Medicine

引用

页码：394 / 397

页数：4

共 9 条

[1] New challenges in the management of prolonged survivors of pediatric neuromuscular diseases: A pulmonologist's perspective [J].