CA N C E R I N C H I L D R E N A N D YO U N G A D U LT S
Handle with care Understanding the transition towards end of life care in paediatric oncology EONS President-Elect Professor Daniel Kelly reports on the initial findings of ongoing research into appropriate palliative care for children and support of their families Whilst the five year survival rate for many children’s cancers is now over 80%, some children will inevitably relapse or fail to respond to all the treatments available. When this happens they, and their parents and family, will require care tailored to their unique circumstances. This includes specific emotional, physical and social support. However, the research evidence available to guide professionals providing support during the transition from curative to palliative care needs further development. Myself and colleagues at Edinburgh University (Professor Pam Smith, Dr Mia Nelson & Rachel McAndrew) have been researching this issue over the past year. Previous research evidence had suggested that traditional models of palliative care in children may lack applicability in situations where treatment outcomes are unpredictable. This may be particularly relevant in haemato-oncology settings where the condition and prognosis may fluctuate rapidly. A particular challenge is balancing the technical aspects of ongoing (and sometimes futile) treatment with the likelihood of impending death and the need for effective and timely end of life care to be instigated. A range of issues influence how different families deal with such challenging situations including their relationships with health care providers; the nature of communication between themselves and those within their social circle (including
other parents), and the availability of support and information where and when it is needed. Understanding how parents and other family members adapt and cope with relapse and the terminal illness phase, therefore, can help guide health care professionals in their provision of appropriate assistance and care planning. For instance, choice and control are two key concepts that have been found to be essential to enhance parents’ coping strategies. Importantly, emotional distress may occur when parents feel their needs are not being met – or even heard. In this instance, parents may look to each other for support, and may choose to communicate their concerns to each other via mobile phones or chat rooms to help each other. In turn, this may leave professionals unaware and uninvolved (or criticised either overtly or covertly), so increasing their anxiety about how to deal with this challenging situation. There have also been calls for more support to be provided in the home setting but this is matched with concerns about taking a child home towards the end of life, and the challenge of sometimes discontinuing aggressive treatment as this might be considered ‘giving up’. This is likely to be especially problematic when the child has been managed mostly in a hospital setting – which may still be associated with a chance of cure. Professionals, therefore, need to assess the pro-
vision of adequate and appropriate support before home care is considered. In our study, we interviewed parents who had lost a child to cancer – up to ten years ago. They were asked to recall the phase of care that had introduced the likelihood that their child might not survive. We are currently writing up our findings and will report on the study soon. However, it is possible to reveal here that all parents could recall very vividly, despite the passage of time, conversations with individual professionals, the rooms these took place in and professionals’ behaviours and attitudes that signaled bad news was coming. They could also, however, empathise with nurses and doctors in such a difficult situation. The outcomes from this study will be fed back to the unit and professionals involved and we hope to develop awareness training – especially for professionals who lack experience in this important and challenging aspect of paediatric oncology. Such work, if it is to be done well, needs resilience and skill. Anyone who would like to know more about this work can contact Professor Kelly via the EONS office – eons.secretariat@cancernurse.eu.
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