Please use this identifier to cite or link to this item: https://hdl.handle.net/2440/98585
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Type: Journal article
Title: Balancing obligations: should written information about life-sustaining treatment be neutral?
Author: Xafis, V.
Wilkinson, D.
Gillam, L.
Sullivan, J.
Citation: Journal of Medical Ethics, 2015; 41(3):234-239
Publisher: BMJ Publishing Group
Issue Date: 2015
ISSN: 0306-6800
1473-4257
Statement of
Responsibility: 
Vicki Xafis, Dominic Wilkinson, Lynn Gillam, Jane Sullivan
Abstract: Parents who are facing decisions about life-sustaining treatment for their seriously ill or dying child are supported by their child’s doctors and nurses. They also frequently seek other information sources to help them deal with the medical and ethical questions that arise. This might include written or web-based information. As part of a project involving the development of such a resource to support parents facing difficult decisions, some ethical questions emerged. Should this information be presented in a strictly neutral fashion? Is it problematic if narratives, arguments or perspectives appear to favour stopping over continuing life-sustaining treatment? Similar questions might arise with written materials about decisions for adults, or for other ethically contentious decisions. This paper explores the meaning of ‘balance’ in information provision, focusing particularly on written information about life-sustaining treatment for children. We contrast the norm of nondirectiveness in genetic counselling with the shared decision-making model often endorsed in end-of-life care. We review evidence that parents do not find neutrality from medical professionals helpful in discussions. We argue that balance in written information must be understood in the light of the aim of the document, the most common situation in which it will be used, and any existing biases. We conclude with four important strategies for ensuring that non-neutral information is nevertheless ethically appropriate.
Keywords: Humans
Critical Care
Palliative Care
Terminal Care
Withholding Treatment
Disclosure
Parents
Decision Making
Choice Behavior
Personal Autonomy
Counseling
Coercion
Informed Consent
Pamphlets
Adult
Child
Terminally Ill
United States
United Kingdom
Description: Published Online First 24 April 2014
Rights: This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 3.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/ licenses/by/3.0/
DOI: 10.1136/medethics-2013-101965
Grant ID: http://purl.org/au-research/grants/nhmrc/1016641
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