Objective To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care.
Design National cohort of PICU admissions linked to Office of National Statistics death certificate data.
Setting 31 PICUs in Great Britain.
Participants A cohort of 35 383 children admitted to PICUs between 1 November 2002 until 25 January 2007.
Main Outcome Measures Place of death by palliative care discharge status.
Results 2346 (6.6%) deaths occurred after discharge during the study period, which is more than 10 times the normal child population mortality of 6.0 per 1000. Discharge to palliative care resulted in fewer deaths in hospital (44.1%) (compared to non-palliative care discharges (77.7%)), a greater proportion of deaths were at home (33.3% compared to non-palliative discharges 16.1%) and in a hospice (22.5% compared to non-palliative discharges 5.8%).
Conclusions Children referred to palliative care services at discharge from PICU are more likely to die in the community (home or hospice) than children not referred to palliative care.
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The number of children aged between birth and 15 years that die in England and Wales has been around 3500 each year since 2001.1 There is some epidemiological evidence on place of death in children who receive palliative care2 but no evidence on the comparison with place of death in other children. There is previous research on the place of death within hospital in the UK which has shown an increasing number of children that die in a paediatric intensive care unit (PICU)3 but no research on place of death following PICU discharge.
The choice of place of death research has focused mainly on families with children with cancer. The parents often prefer end of life care to occur at home, as do the children themselves; “Home is almost always the preference of the child, who can be in familiar surroundings”.4 There is evidence that a child dying in the hospital setting can have adverse psychological effects on the parents (especially fathers) compared to the parents of children who die at home.5
The International Meeting for Palliative Care in Children, Trento document6 from the European Association of Palliative Care has stated standards for paediatric palliative care in Europe. In the core standards it states ‘palliative care must be provided wherever the child and family choose to be (eg, home, hospital or hospice’. Further on it states ‘the family home shall remain the centre of caring wherever possible’.
What is already known on this topic
Most children who die with a life limiting illness do so in hospital despite child and parent preferences to die at home.
What this study adds
Discharge to palliative care from PICU influences place of death with more children dying in the community (home or hospice).
The Paediatric Intensive Care Audit Network (PICANet) is national audit of children admitted to a PICU in Great Britain. It provides a unique resource of demographic data and clinical and outcome measures for critically ill children admitted to PICUs in Great Britain. This study aims to provide epidemiological evidence on the place of death in children who have been discharged from a PICU examining whether a discharge to palliative care affects where they die.
A standardised dataset including demographic, clinical, admission and discharge information was collected by PICU staff using bespoke software provided by PICANet on all PICU admissions. Each participating unit is asked to code multiple variables on discharge of the patient, including ‘discharge for palliative care’ which is defined as ‘withdrawal of care at the current level if it is deemed that the admission can no longer benefit’. This is coded as yes, no or not known. Units are also asked to code ‘destination following discharge from unit’ defined as ‘normal residence, hospice, same hospital, other hospital or not known’. PICANet provides training on data definitions and data quality and with central and local validation ensures consistent data quality between units.7
This study uses a subcohort of the PICANet database from 1 November 2002 until 25 January 2007. This data was linked with Office of National Statistics death certificate data up to 31 March 2007. Any admissions where the child had died in PICU were removed from the dataset.
Admissions were grouped into those children who had been discharged to palliative care and those not palliative on discharge.
Clinical diagnoses for each admission were coded using Clinical Terms 3 (The Read Codes), which were aggregated into 12 primary diagnostic groups.
Discharge destination from PICU were classified into hospital, home, hospice or other. Place of death (if occurred) was coded from the Office of National Statistics death certificate data and was also classified into hospital, home, hospice or other.
Age was analysed as a continuous variable (age in days) and sex was included only where non ambiguous (male/female).
All statistical analyses were performed using STATA V.10 with between group comparisons using χ2 test with statistical significance at p<0.05.
Collection of personally identifiable data was approved by the Patient Information Advisory Group and ethical approval granted by the Trent Medical Research Ethics Committee, reference 05/MRE04/17.
Out of the total cohort of 35 383 discharges, there were 2346 (6.6%) deaths during the study period of which only 111 (4.7%) were discharged to palliative care services.
Table 1 shows the clinical and demographic characteristics of the palliative and non-palliative groups. There was no significant difference in age (χ2 2.42, p=0.51), gender split (χ2 0.02, p=0.89), ethnicity (χ2 1.29, p=0.25) or deprivation status (χ2 4.56, p=0.34) between the palliative and non-palliative groups. The groups differed significantly in diagnostic categories (χ2 67.38, p<0.001) with more neurological diagnoses in the palliative care group and more cardiac and trauma diagnoses in the non-palliative group. The discharge destination from PICU was also significantly different (χ2 2.3e03, p<0.001) with more children being discharged to home or hospice in the palliative care group. It should be noted that 12 children in the non-palliative care group were discharged to a hospice.
The mean time to death was 473 days (SD 465) in the palliative group and 404 days (SD 428) in the non-palliative group. This difference was not significant (t= −1.63, p=0.10).
Place of death
Place of death is shown in figure 1. The largest proportion of deaths in both groups occur in hospital (44.1% of palliative care discharges, 77.7% of non-palliative discharges) but there are a higher proportion at home (33.3%) and in the hospice (22.5%) in the children who have been discharged for palliative care. Of those who were not palliative at time of discharge only 16.1% died at home and 5.8% in a hospice.
Figure 2 shows place of death in relation to discharge destination from PICU. These data highlight that the majority of those who died, died in the same location to which they had been discharged from PICU. This was irrespective of whether the child was receiving palliative care on discharge from PICU or not. Of those discharged to palliative care at home, 90% died at home. Of those discharged to a hospice 80.9% died in the hospice.
Our novel results show there are more than 10 times the number of deaths in children post-PICU discharge (66 per 1000) compared to the normal child population mortality of 6.0 per 1000.8 However, only a small proportion of the children who subsequently die are deemed to require palliative care on discharge. Of these children one would expect that more children are discharged home or to a hospice compared to non-palliative care discharges, although the majority of all discharges are still to another hospital setting.
Place of death
Discharge for palliative care has an effect on place of death of children; more of these children died outside of hospital. The place of death in this group of children was similar to results of a previous study2 which found that there was a relatively even split in place of death; home (35.1%), hospice (32.1%) and hospital (31.9%) with other places (0.9%), of children who were receiving input from paediatric palliative care services. Other studies investigating place of death in children have concentrated on cancer diagnoses where the evidence suggests a higher proportion die at home (52.2%) or hospital (43.3%) with a much lower hospice proportion of (3.1%).9 The recent confidential enquiry into where children die found that deaths in children with a life-limiting illness occurred in hospital in 73%, with 19% at home and only 2.6% in hospices.10
The proportion of children who died in hospital in the group who were non-palliative at PICU discharge is very large (77.7%). Choices for families and young people appear to be limited in this group.
This paper uses data from a national database to increase the knowledge regarding the need and use of paediatric palliative care. There are some limitations which should be taken into account. The definition of palliative care used in PICANet is clearly defined but more restrictive than the WHO definition.11 Palliative care status is reported in PICANet at the time of discharge but some children may have been referred to palliative care at a later stage in the course of their illness. The availability of specialist palliative care services for the PICU was not accounted for nor was there any information on whether children were known to palliative care services prior to admission to PICU. Although the data quality of PICANet is constantly reviewed, inconsistencies may remain; for example, a small number of children in the non-palliative care group (n=12) were reported as discharged to a hospice.
Overall, the mortality for children who have had a PICU admission is more than 10 times the whole population mortality for children aged 0–15 years in England and Wales but only a small proportion are offered palliative care on discharge.
The majority of children continue to die in hospitals but children referred to palliative care in the community (home or hospice) are likely to die in this setting.
The reasons as to why some children are referred for palliative care and others are not is poorly understood but all children and families should have the opportunity to choose their place of death.
Participators Addenbrooke's NHS Trust: Addenbrooke's Hospital; Bart's and the London NHS Trust: Bart's and The Royal London; Birmingham Children's Hospital NHS Trust: Diana, Princess of Wales Children's Hospital; Brighton & Sussex University Hospitals NHS Trust: Royal Alexandra Hospital for Sick Children; Cardiff & Vale NHS Trust: University Hospital of Wales; Central Manchester & Manchester Children's University Hospitals NHS Trust: Royal Manchester Children's Hospital; Great Ormond Street Hospital for Children NHS Trust: Great Ormond Street Hospital for Sick Children; Guy's & St Thomas' Hospital NHS Trust: Guy's Hospital; Hull & East Yorkshire Hospitals NHS Trust: Hull Royal Infirmary; King's College Hospital NHS Trust: King's College Hospital; Leeds Teaching Hospitals NHS Trust: Leeds General Infirmary, St James University Hospital; Newcastle upon Tyne Hospitals NHS Trust: Newcastle General Hospital, Freeman Hospital, Royal Victoria Infirmary; Oxford Radcliffe Hospitals NHS Trust: John Radcliffe Hospital; Queen's Medical Centre Nottingham University NHS Trust: Queen's Medical Centre; Royal Brompton & Harefield NHS Trust: Royal Brompton Hospital; Royal Liverpool Children's NHS Trust: Alder Hey Hospital; Royal Group of Hospitals and Dental Hospital HSS Trust, Belfast Hospital for Sick Children; Sheffield Children's NHS Trust: Sheffield Children's Hospital; Southampton University Hospitals NHS: Trust Southampton General Hospital; South Tees Hospitals NHS Trust: James Cook University Hospital; St George's Healthcare NHS Trust: St George's Hospital; St Mary's NHS Trust: St Mary's Hospital; The Lewisham Hospitals NHS Trust: University Hospital, Lewisham; University Hospitals Bristol NHS Foundation Trust: Bristol Royal Hospital for Children; University Hospitals of Leicester NHS Trust: Leicester Glenfield Hospital, Leicester Royal Infirmary; University Hospital of North Staffordshire NHS Trust: Stoke on Trent City General.
Steering Group members Mrs Pamela Barnes, Professor Nick Black (Chair) (2002–2007), Mr William Booth, Ms Bev Botting Child (2002–2003), Dr Jean Chapple (2002–2006), Dr Bill Chaudhry (2002–2003), Dr Anthony Chisakuta, Dr Mark Darowski, Mr Noel Durkin, Dr Ian Jenkins, Dr Steve Kerr, Ms Helen Laing (2004–2006) & (present), Mr Ian Langfield (2002–2003), Lucy Lloyd Scott, Dr Michael Marsh, Dr Jillian McFadzean, Dr Roddy McFaul (2002–2003), Dr Kevin Morris, Professor Jon Nicholl (2002–2006), Dr Roddy O'Donnell, Dr Gale Pearson, Dr Mark Peters, Ms Tanya Ralph (2002–2006), Ms Laura Reekie, Dr Kathy Rowan, Mr Stuart Rowe, Ms Dominique Sammut, Dr Jenifer Smith, Dr Charles Stack (2002–2006), Professor Stuart Tanner (2003–2006), Dr Robert Tasker (2004–2008), Dr Edward Wozniak.
Clinical Advisory Group members Dr Paul Baines (2002–2008), Ms Corenna Bowers (2002–2004), Faith Chinanga, Kathryn Claydon-Smith, Dr Gillian Colville, Dr Anthony Chisakuta, Dr Peter Davis, Dr Andrew Durward, Ms Georgina Gymer (2005–2006), Dr James Fraser (2002–2005), Dr Hilary Klonin, Ms Helen Laing, Ms Christine Mackerness, Tina McClelland, Dr Jillian McFadzean, Ms Victoria McLaughlin, (2002–2007), Elizabeth McKinty, Dr Roddy O'Donnell, Ms Geralyn Oldham, Dr Gale Pearson (Chair), Dr Damian Pryor (2002–2004), Chloe Rishton, Dr Allan Wardhaugh, Ms Debbie White.
Funding PICANet is funded by the National Clinical Audit and Patient Outcomes Programme via the Healthcare Quality Improvement Partnership (HQIP), Health Commission Wales Specialised Services, NHS Lothian/National Service Division NHS Scotland, the Royal Belfast Hospital for Sick Children and the Pan Thames PICU Commissioning Consortium.
Competing interests None.
Ethical approval Collection of personally identifiable data has been approved by the National Information Governance Board (Formerly the Patient Information Advisory Group) http//www.nigb.nhs.uk/ecc/reg/regoutput.xls and ethical approval granted by the Trent Medical Research Ethics Committee, ref. 05/MRE04/17.
Provenance and peer review Not commissioned, externally peer reviewed.