Use of guidelines when planning home care of a girl with severe congenital myopathy

Kelly Gray; David Isaacs; Henry Kilham; Bernadette Tobin; Karen Waters

doi:10.1111/jpc.13065

Use of guidelines when planning home care of a girl with severe congenital myopathy

J Paediatr Child Health. 2016 Jan;52(1):7-10. doi: 10.1111/jpc.13065.

Authors

Kelly Gray¹, David Isaacs^{2

3}, Henry Kilham^{2

3}, Bernadette Tobin⁴, Karen Waters^{5

3}

Affiliations

¹ Long-Stay Ventilation Team, Children's Hospital at Westmead, Westmead, New South Wales, Australia.
² Department of Clinical Bioethics, Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ Discipline of Child Health, University of Sydney, Sydney, New South Wales, Australia.
⁴ Plunkett Centre for Ethics in Health Care, St Vincent's Hospital Sydney and Australian Catholic University, Darlinghurst, New South Wales, Australia.
⁵ Long-Term Ventilation and Sleep Medicine, Children's Hospital at Westmead, Westmead, New South Wales, Australia.

PMID: 26776543
DOI: 10.1111/jpc.13065

Abstract

We use issues that arose in the management of a 4-year old girl with a congenital myopathy to consider the tension between respecting the choices and decisions of the child's parents and applying clinical practice guidelines that emphasise minimising risk to the child. This case raises the issue of when it is reasonable to override parents' choice of management options.

Keywords: autonomy; best interest; guideline; palliative care; quality of life.

MeSH terms

Child, Preschool
Female
Guidelines as Topic
Health Planning*
Home Care Services*
Humans
Muscular Diseases / genetics*
Organizational Case Studies
Palliative Care
Parent-Child Relations
Quality of Life
Severity of Illness Index