The PRIMACY project: Making difficult decisions
Research type
Research Study
Full title
How is the construct of best interests understood when making difficult decisions to persevere with, withhold, or withdraw life sustaining medical treatment in children?
IRAS ID
137344
Contact name
Kristian Pollock
Contact email
Research summary
Cutting-edge advances in science and paediatric critical care medicine have generated the potential to prolong life; nevertheless, it may not always be in the child’s best interests to do so (Wellesley & Jenkins, 2009). Paediatric Intensive Care Units (PICUs) epitomise the quandary of modern healthcare, whereby the potential to achieve medically ‘good’ outcomes exists (Goh & Mok, 2005), but at what cost to the individual child, family, healthcare professionals and society?
Families and health care professionals in PICUs sometimes have to make extremely difficult and emotionally challenging decisions about a child’s treatment and care. These decisions may be about whether the child should be resuscitated if their condition deteriorates; whether it is appropriate to continue intensive care; or whether to withdraw intensive therapies and provide palliative care. Most deaths in PICUs now result from an active decision to withdraw life sustaining medical treatment (WLSMT) (Oberender & Tibballs, 2011; Sands, et al 2009; Ramnarayan, 2007). When making decisions about critically ill children, there may not be an answer that is clearly ‘right’ or ‘wrong’. Disputes are likely with differing understandings of the child’s condition and prognosis together with varying interpretations of moral and ethical values and beliefs. For the child and family this situation is unique, the process exceptional and the outcome decisive, whereas for health care professionals the circumstances, whilst relatively rare, are not exceptional.
This study aims to explore how the construct of best interests is understood when making difficult decisions to persevere with, withhold or withdraw life sustaining medical treatment in children. Ethnographic methods of participant observation, semi-structured interviewing and documentary analysis embedded within a multiple case study design will be utilised.
The results of this study will provide an in depth understanding of the nature and construct of decision-making in the paediatric intensive care setting.
REC name
East Midlands - Derby Research Ethics Committee
REC reference
13/EM/0407
Date of REC Opinion
6 Dec 2013
REC opinion
Further Information Favourable Opinion