Features

Support for bereaved families in the emergency department

When Rhian Burke felt the healthcare system failed her following the death of her son George, and the subsequent suicide of her husband, she decided to set up 2 Wish Upon a Star for bereaved parents and families.

When Rhian Burke felt the healthcare system failed her following the death of her son George, and the subsequent suicide of her husband, she decided to set up 2 Wish Upon a Star for bereaved parents and families.


Picture: Alamy

‘Five years ago my happy, one-year-old son George was playing and laughing with his siblings when he fitted. Two hours later he was dead in the emergency department,’ says bereavement and mental health campaigner Rhian Burke.

‘We had to carry our son down the main corridor looking for somewhere to say our goodbyes. 

‘I was given a scrap of paper with some numbers to call if I needed support – some were out of date – and told to leave my son’s body. There was a complete lack of support and facilities available.

‘We went home and nothing happened. We didn’t know what the procedure would be and no one visited. The police knocked on our door the next day, which I now know is standard for the sudden death of a child, but no one told us they would be involved so for us there was only one reason they were coming. 

Failed system

‘My husband Paul was looking for excuses to blame himself. Five days later he went out and took his own life leaving me with a two and a three-year-old. I don’t blame the staff for my son’s death, but I do blame the system for my husband’s. It failed us.’

Determined to change that system, she founded the charity 2 Wish Upon a Star to improve the support offered to families whose child dies suddenly. Her aim was to provide bereavement suites and memory boxes in every emergency department (ED) in Wales and ensure families are offered immediate support after the death of their child.

A chance meeting with ED senior charge nurse Steffan Simpson, who works for Cardiff and Vale University Health Board, developed into a project that has been so successful it is being rolled out to EDs throughout Wales.

Together with paediatric emergency medicine sister Emily Jones, they developed a pathway for families who experience the death of a loved one under-25 in hospital EDs.

Improving services

Mr Simpson says: ‘With more than 34,000 attendances in the paediatric emergency unit each year, we wanted to improve the service we offered to bereaved relatives at such an extremely difficult time. 

‘From September 2013 to 2014, the emergency medicine department had eight paediatric deaths and a further four children who were transferred to critical care later died on the ward. 

‘There was no provision for these bereaved relatives in the emergency unit. They were signposted to agencies and left to go home without any formal support. Now through our pathway we can offer immediate support to families’.

Process for support

In the event of a sudden paediatric or young adult death, nurses ask the families for consent to share their contact details with 2 Wish Upon a Star. 

Nursing staff clearly document whether consent has been gained on the paediatric emergency unit death checklist and all details are passed to the immediate support worker on a dedicated number. If there is no answer, no patient details are left on the answer machine. Instead a message is left to contact the paediatric emergency unit or the nurse in charge. The support worker will then contact the family and go and meet them if they would like a visit. 

This continues weekly, with phone calls in between as necessary, until both parties agree that level of support is no longer necessary. Families are then directed to the support groups or offered one-to-one counselling with the qualified team provided by 2 Wish Upon a Star. 

If families do not want help in the first instance, the immediate support worker will call back within seven days. If the family continues to not require assistance they receive a letter listing the contact details for support groups provided by 2 Wish Upon a Star for use in their own time.

 

The nurse effectively refers the bereaved family to 2 Wish Upon a Star for support by gaining consent to pass on their contact details. The main challenge in implementing the scheme was getting the health board to agree to share information with an external agency. But once all the governance was agreed and the bereavement steering group had approved the standard operating procedure, the pathway was started on a three-month trial for children and young people under 18. 

During the pilot, Ms Burke, Ms Jones and Mr Simpson, along with the immediate support worker Julie Hart, made small improvements to the project. They agreed to extend the pilot to 12 months and audit the work at the end. 

In that first year, from June 2015 to June 2016, of the 17 paediatric deaths in the emergency unit, 16 families accepted the immediate support. 

‘The support the parents receive through this pathway is everything that we as nurses would like to do'

Emily Jones

Mr Simpson says: ‘The support ranged from text messages to formal counselling and sibling support as part of group and individual therapies. And all are still being supported in different formats. We were also able to feedback to the nursing staff involved in the resuscitation about how the families have been since their bereavement and how they've engaged with services. Our nurses know how successful the pathway has been and the difference it is making to those people. This motivates them to make it happen.’

Ms Jones agrees it has made an enormous difference to families and the nurses who care for them: ‘When I first started here nine years ago I experienced my first paediatric death and there was nothing to give to the family. I remember being on my hands and knees looking in cupboards for some paperwork I could give the parents but there was nothing.’

She credits a bereavement box provided by the charity with helping nurses start conversations around bereavement support with parents who have just lost their child.

‘I am a mum as well and as a nurse you want to give people time, but in the ED there are so many things against you,’ she says. ‘All you want to do is make sure the person is as okay as they can be and do anything you can to make the terrible a bit easier.

Safe hands

‘The support the parents receive through this pathway is everything we as nurses would like to do, but we don’t have the time, resources or money. Now we know these families are in safe hands. The ED will never be perfect to deal with this situation but we can say we are doing the best we can.’

Aimee’s son Jude died from meningitis B in March last year, aged just four and a half months. She says: ‘If it wasn’t for the help, support sessions and bereavement keepsake box we received on this most soul-crushing of days, our grieving journey would have been so much harder.

‘You can never truly appreciate how important tiny hand or footprints and locks of hair could be at such a devastating time when nothing in the world makes sense.’

Memory boxes

Memory boxes are key to ensuring that parents whose child dies in EDs get support.

As well as providing families with invaluable keepsakes, the boxes structure the bereavement support offered and ensure everyone receives the same support. They also help nurses begin difficult conversations with parents.

The boxes include materials to take hand and footprints, a memory card or USB stick, forget-me-not seeds, an organza bag for a lock of hair and a candle. There are babygros, pyjamas, hats and bonnets. A small soft toy elephant is left with the child, with another going home with the family. There is a booklet on 2 Wish Upon a Star and its services and a booklet about the hospital’s bereavement service.

The boxes are under constant review, with Steffan Simpson and Emily Jones feeding back to the charity on what works and anything that does not. The charity talks nurses through the box and provides in-house training in their use.

 

Sharon O'Brien, lead nurse for Cardiff and Vale University Health Board’s emergency medicine directorate, is proud of the pathway. She says: ‘To lose a child is the most devastating time for parents and families. To lose a child unexpectedly and so suddenly in an environment that is so unfamiliar as an emergency unit can leave parents and loved ones feeling isolated and lonely.

‘It is vitally important that parents and families receive the correct support and guidance at the time of the loss, but also later on in the grieving process. It has been an honour to work alongside Rhian to enable the paediatric emergency unit to continue to enhance and develop our services to ensure that we are providing the care to parents and siblings who are affected by a sudden, tragic death of a child.’

‘It is vitally important that parents and families receive the correct support and guidance at the time of the loss but also later on in the grieving process'

Sharon O'Brien

The pathway was such a success that it was extended to all sudden deaths to the age of 25 and rolled out not only to their hospital’s adult and paediatric critical and intensive care, but throughout Wales.

Ms Burke credits Mr Simpson and Ms Jones' commitment and enthusiasm for making the project such a success. They have also fundraised for the charity and a team from the ED took part in the charity’s annual bike ride, raising £2,500.

‘People die all the time in emergency care – I know we have to be realistic,’ says Ms Burke. ‘I know that when the nurse who looked after George went back to the unit someone else had died.’

‘But if we had had support my husband would be here today. He blamed himself and someone should have been able to reassure him that this is normal. We can’t stop children dying, we can just hope it is not ours, but we can stop a father taking his own life.’


Find out more

This article is for subscribers only

Jobs