Spinal muscular atrophy type 1: Is long-term mechanical ventilation ethical?

被引：27

作者：

Ryan, Monique M.

Kilham, Henry

Jacobe, Stephen

Tobin, Bernadette

Isaacs, David ^{[1
]}

机构：

[1] Childrens Hosp Westmead, Dept Allergy Immunol & Infect Dis, Westmead, NSW 2145, Australia

[2] Childrens Hosp Westmead, Dept Neurol, Westmead, NSW 2145, Australia

[3] Childrens Hosp Westmead, Dept Med, Westmead, NSW 2145, Australia

[4] Childrens Hosp Westmead, Clin Eth Advisory Serv, Westmead, NSW 2145, Australia

[5] Childrens Hosp Westmead, Dept Intens Care, Westmead, NSW 2145, Australia

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

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

来源：

JOURNAL OF PAEDIATRICS AND CHILD HEALTH | 2007年 / 43卷 / 04期

关键词：

autonomy; competence; end-of-life; futility; quality of life;

D O I：

10.1111/j.1440-1754.2007.01052.x

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

We present a baby with spinal muscular atrophy type 1, an inherited disorder causing progressive weakness, leading to complete paralysis of respiratory, facial and limb muscles. Without intervention, death occurs in infancy due to respiratory failure. Mechanical ventilatory support can prolong life, but the child's quality of life is highly debatable. We discuss the appropriateness of initiating and continuing intensive care for this child and others in a similar position.

引用

页码：237 / 242

页数：6

共 18 条

[1] Spinal muscular atrophy type 1 quality of life [J].