Regional variations in palliative end of life care



A new guideline on end of life care is due to be published later this year as the National Institute for Health and Care Excellence attempts to ensure high standards are kept.


The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and young people age 1-19 years died in England and Wales in 2012.

end of life care
End of life care. Picture: iStock

Across the UK it is estimated that 50,000 children and young people are living with life-limiting conditions. These individuals’ needs vary because there are more than 300 life-threatening or life-limiting illnesses that can affect those aged under 19.

Regional variations

The National Institute for Health and Care Excellence (NICE) has highlighted wide regional variation in paediatric end of life care practice, and in an attempt to ensure standards are universally high it has consulted on how all services can match the best.

Published in July, the NICE draft guideline on end of life care for infants, children and young people ran to more than 450 pages and covered multiple aspects of care, from managing distressing symptoms to religious, spiritual and cultural support.

Principles at the heart of the draft guidelines were; clear communication, and ensuring the involvement of children and families in decisions about care.


children and young people in the UK, are living with life-limiting illnesses

Consultation on the draft’s content closed in August and the final version is expected in December.

Hope for changes

Helena Dunbar, senior lecturer at school of nursing and midwifery at De Montfort University in Leicester, is hoping for changes, especially in terminology used in the draft.

‘The problem we’ve got is that “end-of-life” is interpreted as just that,’ she says. ‘What children and families need is care throughout their whole journey, right from diagnosis.

'We have a huge population of families in this country who aren’t accessing services because they don’t understand what they are about.’

Her own research underlined the importance of using words and definitions carefully, Ms Dunbar says. ‘If I introduced the concept of palliative care, for example, I could see parents backing off, whereas if I talked about the complex needs of their children, that was different.’

Guidance clarification

Katrina McNamara, director of service development and improvement for the charity Together for Short Lives, agrees that NICE should clarify whether the guidance applies from diagnosis or only at the end of a child’s life.

And there are other gaps in the draft guideline, she says. ‘More could be said about the needs of family members, especially siblings, and the support that should be available to them.’

More than 5,000

Deaths of children and young people under 19 in England and Wales in 2012

While Ms McNamara welcomes the focus on placing children at the centre of their care, she highlights resource issues impeding the delivery of quality care. ‘We know from staff that the resources needed aren’t always available,’ she says.

‘Inadequate community services in some areas mean that sustainable 24/7 services just simply aren’t there to provide end-of-life care in the child’s own home when this is the chosen place of care.’

As a consequence, staff feel they have to restrict the choices they offer.

Communication and support

Exemplary end of life care for children is available in some areas but Eileen White, director of care at Haven House children’s hospice in Essex, says it is dependent on providers – statutory and charitable – working well together.

‘Children and young people are likely to need different services at different stages of their illness and they will get the best care possible when services communicate with and support each other to ensure continuity of care.’

A good service is possible if it is co-ordinated by a lead healthcare professional or team, and is responsive and available to children and their families round the clock and in their preferred place of care, Ms White adds.

More than 300

conditions that can be classed as life-limiting or life-threatening in under-19s 

While resourcing, teamwork and terminology will clearly have a bearing on the success or failure of the final guideline, Cheryl Titherly, improving bereavement care manager at Sands, the stillbirth and neonatal death charity, has another concern.

‘The most challenging aspect of this guidance to implement will be the culture change that will be required to ensure all staff are aware of and comfortable with developing and implementing an effective care plan for end of life care,’ Ms Titherly says.

‘It requires a heightened awareness of the needs of families, and excellent communication skills, to involve relevant colleagues and parents alike. But it can be difficult to develop these skills, particularly for staff who may not encounter these situations on a regular basis.

‘However, this culture change is likely to be the one that will have the biggest impact on practice, and on improving end of life care planning for babies in the neonatal period.’

Getting the message across

‘Good communication between staff providing care and the child and family is imperative,’ says Katrina McNamara, director of service development and improvement at the charity Together for Short Lives. ‘Of course, this isn’t only the case for end of life care but all care we give. However, end of life care brings its own challenges.

'The emotional response can impede communication, so extra time, repeating messages, revisiting conversations, listening to the unspoken words, and helping the family anticipate the next stage in their child’s care and make choices relating to that care if they wish – are all important.

‘Families should expect to be able to access good palliative and end of life care in all environments and be able to discuss care options with the care team from early in their child’s care, and for these discussions to be ongoing throughout that care.’


‘Not the death he wanted’

In a blog on the NICE website, Zoe Picton-Howell, lay member of the NICE guideline committee, describes how when her 15-year-old son Adam died his final wishes were ignored.

‘Adam did not have the death he wanted. We had planned for him to be at home, to die peacefully surrounded by family, friends and his beloved dog. However, due to poor communication and a bizarre administrative reason, Adam died at the local hospice without me and wider family by his side. This is something that still causes us great sadness.

‘I am reassured by the draft guidance recognising how important it is for a child to die in an environment of their choosing.

'Our recommendations will help smooth the transition of children between hospital, hospice and home-based care so that they and their families can receive treatment where they wish. I hope that this will mean no child ever dies alone in a place they do not want to be.

‘To know your child has suffered is one of the worst feelings in the world. I will continue to do all I can to make sure that no child and no family ever goes through what we did.’

Daniel Allen is a freelance health journalist

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