1. Background information of respondent and intensive care unit
A national survey exploring the experiences and views of UK NICU and PICU health care professionals in transferring critically ill babies and children home to die Katy Morton, Children’s Senior Research Sister, University Hospital Southampton NHS Foundation Trust, UK
Background:
The death of a baby or child is often an unforeseen and inconceivable event, frequently resulting in immense suffering and disruption to life for the families involved (Hendrickson,2009). Over 65% of paediatric deaths occur within PICUs and NICUs, and often follow a decision to limit or withdraw life-sustaining treatment. Despite the recent increase in paediatric palliative and hospice services, difficulties remain in recognising and implementing palliative care within NICUs and PICUs. Subsequently, practice appears to result in the limited choice in places of death for critically ill babies/children and their families. There are very few cases of critically ill infants or children requiring ventilation and/or inotropic support being cared for in a hospice or at home during their final hours. The literature on withdrawing life-sustaining treatment at home is limited to case reports, lacking generalisability and rigour in research design.
Aims of study:
Results:
Results Continued:
To investigate experience, characteristics of patients and views of health care professionals (HCPs) towards transferring critically ill babies/children home to die.
191 HCPs completed the online survey (response rate 22%);
55% of the units used an end-of-life care pathway;
70% of respondents reported experience of transferring critically ill babies/children home to die in the last 3 years but only 20% had been involved more than once or twice;
86% of the units reported existing links with a hospice.
Subgroup Analysis:
Methods:
HCPs who had experience of transferring critically ill babies/children home to die were more confident in being able to organise a transfer home but also statistically more in favour of achieving good end-of-life care on the NICU/PICU;
An online questionnaire was developed from existing adult critical care research and adapted specifically for the neonatal and paediatric population;
The questionnaire was piloted to promote face validity and content validity;
Nurses within this survey had statistically significant more positive views than doctors, for four of the 15 predetermined statements;
NICU and PICU HCPs were identified through the Paediatric Intensive Care Audit Network (PICANet), Paediatric Intensive Care Society (PICS) membership, UK Neonatal Networks and the British Association of Perinatal Medicine (BAPM);
There was no statistically significant difference in experience of transfer between PICUs and NICUs;
There was no statistically significant difference in experience of transfer between those who have a palliative care team within the hospital, and those who do not.
Over 900 UK NICU and PICU doctors and nurses were invited to take part by .
Overall, respondents had positive views about transferring critically ill babies/children home to die;
73% of respondents agreed that transferring patients home to die is a good idea;
Questionnaire content:
24% agreed that it would be unethical to prolong a patient’s life to facilitate a transfer;
Discussion:
84% disagreed with it being a waste of health care resources;
This study is the first to explore the experiences and views of UK NICU and PICU HCPs about transferring critically ill babies/children home to die. The findings suggest that the HCPs working within NICUs/PICUs ,who responded to this survey, view the concept of transferring critically ill babies/children home to die positivity and agree that it is a good idea. However, there experience of this, was limited to just one or two patients in a 3-year period.
80% of respondents would consider transferring an intubated and ventilated patient home to die. But only 56% would transfer a patient who needed cardiovascular support i.e. inotropes;
Although 80% reported that they could organise a transfer home, two of the major barriers were identified as staff confidence and access to care within the community. The results indicate that further information is needed to explore the finer practical and logistical elements of transferring critically ill babies/children home to die, and to uncover the complexities underpinning the multi-disciplinary and multi-organisational working requirements.
The 5 most frequently reported barriers to transfers home were:
Lack of access to care in the community (n= 114, 14%)
Staff confidence (n= 88, 11%)
Lack of time to organise the transfer home (n= 88, 11%)
Unpredictability of time to death after withdrawal of treatment (n= 82, 10%)
Patient’s relatives unlikely to cope with the transfer and death at home (n= 72, 9%)
Questionnaire
Background information of respondent and intensive care unit
Closed-ended questions: Experiences of transferring babies/children home to die
15 views about transferring babies/children home to die: Responses rated 1 – 5, strongly disagree to strongly agree
11 Patient Characteristics: Asking respondents to consider transferring home to die
15 barriers: Rank the top 5 barriers to transferring babies/children home to die
Closed-ended questions: Current end-of-life care practices in NICUs/PICUs
Co-Authors:
Dr Anne-Sophie Darlington, Senior Research Fellow²; Professor Maureen Coombs, Professor of Clinical Nursing (Critical Care) ³; Professor Alison Richardson, Clinical Professor in Cancer Nursing and End of Life Care²; Dr Peter Wilson, Clinical Director of Southampton Children’s Hospital ¹.
¹ University Hospital Southampton NHS Foundation Trust, UK; ² Faculty of Health Sciences, University of Southampton, UK; ³ Graduate School of Nursing, Midwifery and Health, Victoria University, New Zealand.