Transferring critically ill babies and children home to die from intensive care.

Abstract

A significant proportion of hospital deaths occur in intensive care units (ICU) and often follow a decision to limit or withdraw life-sustaining treatment. Facilitating the preferred choice in place of death for babies/children is increasingly being advocated, although the literature on a home death is often limited to case reports. To examine (a) health care professionals' (HCPs) views and experience of transferring babies/children home to die from intensive care, (b) patient clinical characteristics that HCPs would consider transferring home and (c) barriers to transferring home. A cross-sectional descriptive web-based survey. A total of 900 HCPs from paediatric and neonatal ICU across the United Kingdom were invited to participate. A total of 191 (22%) respondents completed the survey; 135 (70.7%) reported being involved in transferring home to die. However, most (58.4%) had just transferred one or two patients in the last 3 years. Overall, respondents held positive views towards transfer, although there was some evidence of divided opinion. Patients identified as unsuitable for transfer included unstable patients (57.6%) and those in need of cardiovascular support (56%). There was statistically significant difference in views between those with and without experience, in that those with experience had more positive views. The most significant barrier was the lack of access to care in the community. HCPs view the concept of transferring critically ill babies/children home to die positively but have infrequent experience. Views held about transfers are influenced by previous experience. The clinical instability of patients and access to community care are central to decision-making. A home death for critically ill babies/children is occurring in the United Kingdom but infrequently. Experience of a transfer home positively influences views and increases confidence. Improved multi-organizational collaboration between ICU and community care teams would assist decision-making and facilitation for a transfer home.