Why I think a hospital death can be a powerful and beautiful thing

Francis Edwards says that with children’s palliative care you only get one chance to get it right and argues that society and the NHS need to get better at dealing with death

After 30 years of working in children’s palliative care, I retired as lead nurse for the paediatric palliative care and bereavement support team at the Bristol Royal Hospital for Children (BRHC) in April.

Just before retiring, I was contacted by a mother whose four-week-old baby died in 1974 and her request was: ‘I am now ready to read my daughter’s post-mortem report and I am not sure if you would still have it?’

It had taken her 46 years to be able to ask this question.

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After some research we were able to locate the report.

Answering a grieving parent’s unresolved questions

We also discovered that the baby’s three-chambered heart was still in storage as the mother had given consent for it to be retained after her daughter’s death.

Because of this, we were able to answer the mother’s unresolved questions, place her daughter’s name in our book of remembrance and include her at our annual remembrance service.

Later, the mother wrote again to express her huge gratitude to our team for enabling her to understand, for the first time, why her daughter had died.

After being burdened by ‘terrible’ thoughts for over four decades, she felt freed of the guilt, worry and anger that more could have been done to save her baby at the time.

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It seems unlikely this mother’s questions would ever have been answered if our palliative care and bereavement support team had not been there to respond to her request and understand the importance of her questions.

Comprehensive children’s palliative care and bereavement support service

When I arrived at BRHC ten years ago, no such team existed – I was employed for only two days a week and worked alone.

Today it is one of the few hospitals with a comprehensive children’s palliative care and bereavement support service.

The service works with families and healthcare professionals to ensure decisions are made in the best interests of the child and family, and focused on quality of life.

‘No one is flying the flag for children’s hospitals and palliative care services and this needs to change’

Sometimes the most caring thing is to opt for quality of life interventions rather than treatments where the focus is on prolonging life.

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As palliative care professionals we can try and leave families with a ‘good enough’ memory of their child’s life and death.

The best quality death can be more important than endless treatments

Often the small things matter most: a mother wanting to breastfeed her baby before they die; a child wanting to breathe fresh air and feel the sun on their face; brothers and sisters wanting to hold their sibling’s hand one last time.

Ensuring a child experiences the best quality death and his or her loved ones are left with that good enough memory, and some good memories, can be more important than endless treatment with poor outcomes.

Sadly, often healthcare professionals need the most support to understand this as they are trained to cure and fix the child.

‘Palliative care should be offered at an early stage for anyone with a life-limiting condition and seen as a positive option’

Some see death as a failure; but it does not have to be seen as such – it is simply the next stage.

Palliative care is not about offering solutions, answers or cures, but offering good symptom management, practical support and healing.

Palliative care needs to be reintegrated back into the soul of the health service

Our job is about trying to bring healing – whether physical, emotional, social or spiritual – into what could be viewed as a hopeless situation.

As a society and as a health service, we are not good at dealing with death.

We need a national conversation about what we mean by ‘palliative’, not just ‘end of life’ care.

And we need to reintegrate palliative care back into the soul of health service culture so people are no longer frightened of phrases like ‘we have asked the palliative care team to come and see you’.

Palliative care should be offered at an early stage for anyone with a life-limiting condition and seen as a positive option.

I’ve had the privilege of working in children's palliative care in hospitals, in hospices and in the community.

I chose to return to the acute sector at the end of my career because this is where the majority of our children are dying and in need of good palliative care, with limited resources.

In Avon, in 2013-18, 74% of children who died did so in a hospital, yet a huge amount of lobbying and fundraising is focused on hospices.

More support is needed for children’s hospitals and palliative care services

No one is flying the flag for children’s hospitals and palliative care services and this needs to change.

‘Hospital is often where the child and their family feel safe, surrounded by people who have been caring for them for weeks, months or even years’

While hospices are incredibly worthwhile organisations, we need more support for hospitals.

There is a widely held belief that hospital is no place for a child to die. I respectfully disagree.

Like a home or hospice death, a hospital death can be a powerful and beautiful thing.

Hospital is often where the child and their family feel safe, surrounded by people who have been caring for them for weeks, months or even years.

I’ve had the honour of working with many amazing families over the past 30 years and every single one has taught me something.

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When a child is dying, we only get one chance to get it right

I have learned that the end of life may have an importance out of proportion to its length.

I have witnessed great suffering and have come to see that suffering is not a question that demands an answer.

It is a mystery that demands a presence.

It requires us to listen not just to what is being said, but also to what is not said and listening out for the ‘request’ from a child or a family.

It is about being truly present and not giving presents.

When a child is dying, we only get one chance to get it right.

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Find out more

West of England Child Death Overview Panel (2018) April 2017 – March 2018 Annual Report Report

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Francis Edwards RGN, RSCN is a retired lead nurse for children’s palliative care and bereavement support at Bristol Royal Hospital for Children