Updated perinatal palliative standards emphasise choice, needs assessment and bereavement support

A call for greater support in palliative care and bereavement is highlighted in the case of Ana Todorovic and her baby, Nadia.

A call for greater support in palliative care and bereavement is highlighted in the case of Ana Todorovic and her baby, Nadia.

Ana Todorovic with her son Luca

Ana Todorovic’s baby, Nadia, died just before birth, but she says she received excellent care. She was told when 37 weeks pregnant that Nadia was not going to survive for long.

Nadia had been diagnosed with the heart condition dilated cardiomyopathy, which was not apparent at the 20-week scan. But, with the help of staff at Oxford’s John Radcliffe Hospital and a local hospice called Douglas House, Ana was given the support she needed during the difficult time.


neonatal deaths in the UK each year require palliative care

Now 38, Ana says she ‘desperately’ needed to know all the details, especially what Nadia would look like when she was born if she wasn’t alive. Staff told her Nadia would be swollen, especially around her abdomen, but she would otherwise look like any other infant. They also explained that Nadia might not breathe once the umbilical cord was cut and that she might not survive delivery.

Ana says staff spoke slowly, precisely and straightforwardly about what to expect.

But, she says, the approach was soft and they referred to her baby by name, Nadia, and were ‘at ease with our tears’.

‘This combination resonated with our need to know things, but at the same time to be sheltered from the blows. Nadia died a week later, minutes before she was born. But I was braced for it and I spent the time after delivery holding her while she was still warm. I got to know my daughter as much as anyone could have known her and this meant the world to me,’ Ana says.

Care challenge

This is what palliative care for babies should be like, says Together for Short Lives. The charity highlighted the story as it published new guidelines, A Perinatal Pathway for Babies with Palliative Care Needs, which is aimed at all those working in fetal medicine, antenatal, neonatal and maternity services in the UK.


of the 2,100 deaths occur in hospital

Providing palliative care to babies and their families is – thankfully – only needed in a small minority of cases. More than 2,000 babies require it each year. However, getting care right is a challenge, says Together for Short Lives.

Diagnoses may be unclear, the condition of babies can change dramatically and care can be provided in multiple settings, including at hospital, home and hospices.

But the charity’s development director Lizzie Chambers says it is vital to get it right.

‘The time parents have to spend with their baby can be short and therefore very precious – if it is missed it is gone forever.’

So what does excellent care look like? The charity’s pathway includes six key standards:

  • Sharing the news.
  • Planning for choice in the location of care.
  • A multi-agency assessment of needs.
  • A coordinated multi-agency care plan.
  • End of life care.
  • Continuing bereavement support and care.

Open and honest

There is an emphasis throughout on involving families and being ‘open and honest’ with them as well as good planning and multi-agency working.

RCN professional lead for children and young people’s nursing Fiona Smith, says the charity is right to produce the pathway – an update of guidance produced in 2009 – as there is a ‘serious need for better support. ‘I hope it is implemented across the UK. It will help staff plan appropriate palliative care that will give parents the best experience with their baby.’

Neonatal Nurses Association executive member Julia Petty agrees. She says: ‘The problem is too much variation so to have guidance like this is important.'

But she says the challenge is implementation. ‘Plans need resourcing and investment. Staff need to be trained and need time to devote to this. I’ve heard of neonatal staff who get one day a month for their bereavement responsibilities. It is not enough.’


key standards are included in the perinatal pathway

(Together for Short Lives 2017)

Hospices are also struggling to recruit nurses. A snapshot survey by Together for Short Lives shows a vacancy rate of 11% in the UK. The charity got responses from 24 hospices in its poll with two thirds of posts unfilled for more than three months and one in four for more than one year. The majority of services said the vacancies were having an impact on care with 58% reporting a reduced offer to families or reduced short breaks. Some 17% said they were being forced to close beds, while 13% said it affected their ability to provide 24/7 care.

Chief executive officer Barbara Gelb says she is ‘deeply concerned’ by the nursing shortages. ‘Children’s hospice services provide lifeline palliative care to Britain’s sickest children, helping to manage their pain and symptoms and maximising their quality of life and end of life care.’

Perinatal pathway standards

1. Sharing the news

Families should always be told as early as possible even if the diagnosis has not been agreed fully – and so this can come during pregnancy, around birth or afterwards. Parents should be spoken to together if possible, in private and given plenty of time. Written information can be useful, but should never be used as a substitute.

2. Planning for choice in the location of care

While 98% of deaths happen in hospital, every family, where possible, should have the opportunity to spend time in the location of their choosing. Therefore, a multidisciplinary meeting should take place as soon as possible and clear plans drawn up for any potential transfer.

3. A multi-agency assessment of needs

Babies and families should have their needs assessed as soon as possible. It should be done through a multiagency approach with a lead person identified clearly. Equipment should also be assessed as well as any support required for the family’s financial matters.


Perinatal pathway standards

4. A coordinated multiagency care plan

Following the needs assessment, a care plan should be drawn up to set out the agreed level of support. It may cover planning for antenatal care and birth – if the condition is diagnosed at this stage – postnatal care and the broader health and social care input needed. A plan for symptom management and advanced care plan detailing the family’s wishes for end of life care may also be needed.

5. End of life care

When the baby is approaching end of life staff should be ‘open and honest’ with the family. When a decision has been made about ending intensive care, families should be told about what to expect as their baby dies. Families should also be supported to make memories such as photos, footprints or locks of the baby’s hair.

6. Continuing bereavement support and care

All families should be offered a follow-up appointment with their consultant and/or care team so they have opportunity to reflect and ask questions. Bereavement support should be offered.

Nick Evans is a health writer

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