Evidence
Alert

Most children with life-limiting conditions still die in hospital, not home or hospice

Around seven in 10 children and young people with life-limiting conditions die in hospital, and that has changed little in the past 15 years. New research also found that children from ethnic minorities or deprived areas are more likely than others to end their lives in hospital, rather than in a hospice or at home. 

Specialist end-of-life (palliative) care is not consistently available for children across the country. Some children's hospitals do not have palliative services. Hospices (which specialise in end-of-life care) may not have places; support services are not always available for children at home. NHS England is currently re-organising paediatric palliative services. This study provides information on current practice: where children with life-limiting conditions die, and factors affecting their choice. 

Some families may prefer hospital care, where the child is well-known to staff. But previous work has suggested that where families are well-supported, they are much more likely choose home-based or hospice care. Parents have been shown to cope better over the long-term, when their child has been able to die at home.   

Researchers explored whether the age of the child, their condition or their background influenced the place of death. Their findings suggest that families from deprived and some ethnic minority communities may have fewer options when facing this heart-breaking situation. 

All families, regardless of the child’s diagnosis or background, should have access to specialist end-of-life care, the researchers say. Palliative care services are needed at all children’s hospitals. 

What’s the issue?

Although deaths among children in the UK are much less common than those of adults, 4,500 children die in England and Wales each year. Some deaths are unexpected but around half of these children have life-limiting conditions and could benefit from palliative care. 

Previous research has suggested that parents cope better, even years later, when their child has been able to die at home. Not all families prefer this, but another study found that those with access to palliative services were eight times as likely to die somewhere other than in hospital. It could be that death at home or in a hospice indicates that good palliative care services were available. 

Provision of paediatric palliative care is inconsistent across the country and often depends on an individual clinician or the voluntary sector. The service is not offered at all hospitals, even at some cancer centres for children.

In the past 20 years, hospices for children have become more numerous and there are now more than 50 in England. Researchers wanted to know whether the increase in hospice places was matched by an increase in the numbers of children who die in hospices, along with a reduction in the numbers who die in hospital.  

At a time when palliative care services for children in England are being re-organised, researchers wanted a clear picture of current practice, to inform the changes in service provision. 

What’s new?

Researchers looked at the records of more than 39,000 children and young people (aged up to 25) who died with life-limiting conditions in England. Between 2003 and 2017, most of the children (73%) died in hospital. Far fewer died at home (16%), or in a hospice (6%). 

They explored whether considering children’s ages, their diagnoses and their backgrounds had an impact on the place of death. They looked at changes over the 15 years of the study.

The researchers found little change overall in the numbers of children who died in hospital (falling from 73% to 70%) or in those who died at home (rising from 15% to 16%). More children died in hospices (rising from 5% to 8%).

The place of death was affected by various factors.

    • The children’s age. Older children were more likely than younger children to die in a hospice or at home. Most infants died in hospital (97% of those in the first month; 71% aged 1-12 months). This fell to just over half (57%) of children aged 6-10 years. 
    • Deprivation. Children living in more deprived areas were more likely to die in hospital than children from better-off areas. 78% of children from the most deprived areas died in hospital, compared to 66% of those from the least deprived areas.
    • Ethnic group. Those from some ethnic minority communities were also more likely to die in hospital. Most children from Chinese, Mixed or Other backgrounds (78%) and from Bangladeshi communities (85%) children died in hospital. This is higher than the two in three (69%) of White children. 
    • Diagnosis. Children with cancer were less likely than others to die in hospital. Less than half of those with cancer (44%) died in hospital. These children had the highest rates of deaths at home (41%), and of hospice deaths. 

Why is this important?

The study confirms that most children with life-limiting conditions die in hospital. This means that hospitals need palliative care services, and currently not all have them. 

The research therefore raises questions about whether children’s and families’ needs are being met, and whether services are sufficiently flexible. The results need to be interpreted carefully since not all children with life-limiting conditions will choose to die in a hospice or at home. There is insufficient information about children and families' preferences.

The influence of the child’s age on the place of death could reflect the unpredictability of babies’ conditions. This could make it more challenging to offer support outside of hospitals. 

The finding that children with cancer were much more likely than others to die at home or in a hospice could reflect the different model of care in place. Children with cancer typically receive palliative care from specialists, including teams of paediatric oncology nurses working in most major treatment centres. These nurses are involved throughout their treatment and can provide palliative care.

Further research needs to explore why so many more children from ethnic minorities, than from White backgrounds, died in hospital. Flexible services may be needed to meet cultural or religious requirements around the time of death. 

What’s next?

The researchers call for paediatric palliative care services to be put in place in children’s hospitals. This would help families and children get the care they need regardless of the place of the child’s death. 

The team is now looking at different models of paediatric palliative care. The place where the child is cared for is not the only issue. Different professionals and services need to be involved. This ongoing research aims to find the most effective and efficient model of services, whether in hospital, hospice or at home. 

You may be interested to read

The full paper: Gibson-Smith D, and others. Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study. Archives of Disease in Childhood 2021 

A paper which looks at the number of children with life-limiting conditions: Fraser LK, and others. Estimating the current and future prevalence of life-limiting conditions in children in England. Palliative Medicine 2020 

Together for Short Lives, a charity that supports families with children with life-limiting conditions. 

Martin House Research Centre, which has information about research into end of life care for children with life-limiting conditions. 

Funding

This research was funded by the Martin House Research Centre and supported by a NIHR Doctoral Research Fellowship and a NIHR Career Development Fellowship.

Commentaries

Study author

There are policy implications for the funding and location of services. Paediatric palliative care should be funded adequately both in children’s hospitals and in community settings. More children are dying in hospices than in the past, but it’s still a small percentage, despite the large numbers of hospices. But hospices shouldn’t be the only places where you can receive bereavement care, or care for siblings, or the only place that will let you take your child home after they have died. 

Hospitals need palliative care teams, and not all have them. 

Children with cancer were much less likely to die in hospital than those with other conditions. Cancer care is better funded but also organised differently, with teams of paediatric oncology nurses who can provide palliative care. That is making a difference. One of the main barriers to children dying at home is the lack of availability of community nursing teams. They are poorly funded, and recruitment and retention of staff is a big issue. 

We need to explore the preferences of families. We have less information about conditions other than cancer, particularly among babies and infants. We also need to know why children of disadvantaged and some ethnic backgrounds are more likely to die in hospitals.

Lorna Fraser, Professor of Epidemiology and Director of the Martin House Research Centre, Department of Health Sciences, University of York 

Compassion in Dying

More work is needed to understand, not only where children die but whether this matches their wishes and preferences, and whether the care was personalised. Clinicians could be encouraged to talk to children and their families about where the child wants to be cared for if they are at the end of life.

The research found that children from ethnic minority backgrounds were less likely to be cared for in hospices. It suggests that hospices need to educate different communities about the benefits of hospice care. Namely, that hospice care can provide physical, spiritual, emotional and social support for both the person and their loved ones and provide personalised care for people with life-limiting or terminal illness. This can be provided both in hospices, and for people who decide to remain at home.

Hannah Easdown, Policy and Research Officer, Compassion in Dying 

Lived experience

My interest in palliative and end-of-life care is based on my experiences as a carer for my Mum. I am an advocate for improving these services for everyone.

It is absolutely critical to have a coherent and joined up approach to providing these services for all children from all backgrounds, and with a variety of life-limiting illnesses. It would be encouraging to see more research that seeks the views of patients, families and carers.

Nicki Haywood, Public Contributor, Staffordshire 

Conflicts of Interest

Hannah Easdown is a member of the Interim Advisory Group (IAG), at the NIHR Centre for Engagement and Dissemination.