Spinal muscular atrophy type I: Do the benefits of ventilation compensate for its burdens?

被引：22

作者：

Gray, Kelly ^{[1
]}

Isaacs, David ^{[1
,2
]}

Kilham, Henry A. ^{[1
]}

Tobin, Bernadette ^{[3
,4
]}

机构：

[1] Childrens Hosp Westmead, Westmead, NSW 2145, Australia

[2] Univ Sydney, Sydney, NSW 2006, Australia

[3] Australian Catholic Univ, Sydney, NSW, Australia

[4] St Vincents Hosp, Plunkett Ctr, Darlinghurst, NSW 2010, Australia

来源：

JOURNAL OF PAEDIATRICS AND CHILD HEALTH | 2013年 / 49卷 / 10期

关键词：

autonomy; benefit and burden; quality of life; withdrawal of treatment;

D O I：

10.1111/jpc.12386

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

We report the progress of an 8-year-old child with spinal muscular atrophy (SMA) type 1. The parents elected in infancy that the child should be on long-term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated in the hospital. The leader of the long-term ventilation team reports on the child's progress and describes a week in the child's life. Two paediatricians argue that the benefits of long-term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long-term ventilation now. They argue that long-term ventilation might have been avoided by applying to a court of law when the child was an infant. An ethicist discusses ethical aspects of decision-making in SMA type 1.

引用

页码：807 / 812

页数：6

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