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Child cancer: ‘The transition to palliative care is profoundly emotional’

Nurse researchers examined how parents and staff experience the period when a child moves from active to palliative care. Their findings should help all nurses supporting families through devastating loss.
child cancer

Nurse researchers examined the experience of parents and staff when a child moves from active to palliative care. Their findings should help all nurses supporting families through devastating loss

In the past 20 years or so, the outlook for children diagnosed with cancer has changed dramatically. New treatments have transformed outcomes and the prognosis is generally positive, particularly for the most common childhood cancer, acute lymphoblastic leukaemia. But that is not true for everyone; some children with cancer will die.

Pam Smith, professorial fellow in nursing studies at the University of Edinburgh, says that as well as being devastating for children and their families, terminal cancer in children is also challenging for the nurses involved in their care.

So how should nurses and other health professionals navigate

...

Nurse researchers examined the experience of parents and staff when a child moves from active to palliative care. Their findings should help all nurses supporting families through devastating loss  


The research involved in-depth interviews with parents who had lost a child
to cancer. Picture: iStock

In the past 20 years or so, the outlook for children diagnosed with cancer has changed dramatically. New treatments have transformed outcomes and the prognosis is generally positive, particularly for the most common childhood cancer, acute lymphoblastic leukaemia. But that is not true for everyone; some children with cancer will die.

Pam Smith, professorial fellow in nursing studies at the University of Edinburgh, says that as well as being devastating for children and their families, terminal cancer in children is also challenging for the nurses involved in their care.

So how should nurses and other health professionals navigate this difficult transition, when care moves from active to palliative? What are the emotional and practical challenges and how should they be tackled?

Profoundly emotional

Three years ago Professor Smith and her colleagues set out to examine these issues by talking to parents and staff about their experiences of childhood cancer and palliative care. The co-lead of the research project was Daniel Kelly, the RCN's chair of nursing research and president of the European Oncology Nursing Society. Professor Kelly, who is based at Cardiff University, brought an interest in palliative care in younger people and has continued the work with adolescents with cancer.  

The findings of the research, run with NHS Lothian and funded largely by The Edinburgh and Lothians Health Foundation, are now being put into practice.

‘It’s no surprise that this transition time was a profoundly emotional experience,’ says Professor Smith. ‘How do you help parents to understand that sometimes this outcome is inevitable, and how do you support them?’

The central part of the research was talking to parents, but it also involved hearing from staff members, including nurses, about how they felt current processes worked and how they could be improved.

‘What was interesting and reassuring was that there was no great discrepancy between what staff said they tried to do and what parents said they experienced,’ says Professor Smith.

In-depth interviews  

‘It’s obviously a difficult time for staff too. They have been working with these families, often for quite a long time, and as health professionals they want to make people better. But in these cases, there’s no solution, just alleviation.’

The research involved in-depth interviews with parents who had lost a child to cancer more than a year, but fewer than 10 years, earlier. The families were identified as being suitable by paediatric oncology research nurse Rachel McAndrew, who had worked with most of them when their children were being treated.

Seven families agreed to take part, with 4 moving on to the second stage, which involved using ‘emotional touch-point storytelling’ to explore their feelings at the time when they were told their child was moving from active to palliative care.

In addition, staff were asked how they felt about working with families during the transition stage. The process was informed by an advisory group, which included a parent who had been through the experience, a factor Professor Smith felt was crucial.

‘Warning shot’ 

The interviews were conducted by registered nurse and midwife Mia Nelson, who has a PhD in psychology and is a post-doctoral fellow in the School of Health in Social Science at Edinburgh University.

‘The parents were selected by the clinical staff, who wrote to them initially to see if they were happy to take part,’ says Dr Nelson. ‘Then I went to their homes to interview them. It was an emotional process. I think there were a fair few tears on both sides.’ 

Like Professor Smith, Dr Nelson was reassured that accounts given by parents largely correlated with those of staff, although there were some interesting differences.

The room where bad news was often delivered made a strong impression on parents and staff, but only the staff 'hated it'.  ‘Parents referred to it as the “room of doom”,’ Dr Nelson says. ‘They knew that if they were asked to go there it was likely to be bad news. It was a warning shot for them, but they didn’t mind having to go in there, whereas the staff hated it and found it distressing.’

Flexible procedure 

Ms McAndrew says: ‘One of the big things that I took away from this research is that having a warning shot isn’t necessarily a bad thing,’ she says. ‘It helps prepare people and it doesn’t just happen in a hospital.

‘There was one family where the mum heard the bad news on her own because her husband was away, so she was supported by her friends. When her husband got home and saw all the handbags lined up he knew there was something wrong because there wouldn’t normally be people there at that time.’

The research also highlighted the importance of not being too rigid, particularly about transitions between services for children, young people and adults. It might be better for the family to stay with the service they are used to, rather than transferring to a new set of services and people, when death is likely to be imminent.

Families appreciated the opportunity to use accommodation facilities, generally provided by charities, on hospital sites. ‘It gave them a break and a place to go while still being close to the hospital,’ says Dr Nelson.

Breaking bad news 

What also became evident in the study was that people react to bad news in different ways. Staff should be aware, for example, that some parents may be physically sick.

The project team made a number of recommendations, which have been taken up by local health services. These include reassuring staff members that their skill in breaking bad news and supporting parents is effective and highly valued, and should be shared with new staff and nursing students to develop good practice. Parents should be supported with facilities such as on-site accommodation, and the peer support staff offer each other should be recognised as a vital resource. The research also highlighted that a terminal diagnosis has a profound and lasting impact on families.

‘We need to think about how to support them and to recognise that what suits some people won’t suit everyone,’ says Professor Smith. ‘For parents, this is an unfinished story.’

Nurses in many settings work with families as children go through a transition to palliative care. Paediatric oncology research nurse Rachel McAndrew, shares lessons from the study

  • Make time to listen to parents at every stage. No one should feel rushed.
  • Families report that receiving bad news is easier when it is delivered by people who are familiar, and where a relationship of trust has been built.
  • Don’t underestimate the value of supporting people to make choices, for example, about place of death.
  • Ensure that you know what resources and services are available for advice and/or referral, for example, palliative care teams, family accommodation and support services from charities such as local hospices and Maggie’s Centres.
  • Involve families (and patients where appropriate) in anticipatory care planning from an early stage, so they are prepared for what symptoms to expect and how they can be treated.
  • Accept that parents might need to ask the same questions repeatedly as they try to take in the implications of the transition.
  • Recognise that people react to bad news in different ways. When someone reacts in a physical way, such as being sick or having a panic attack, it does not mean that you’ve done something wrong.
  • Privacy is important when delivering bad news, but so is ensuring that people have as much time as they need before facing the world again.
  • It is difficult caring for patients and families with a palliative diagnosis and during end of life. Make sure that you support your colleagues and allow them to support you. Remember to look after each other.

Jennifer Trueland is a freelance health writer

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