Aims To develop a more flexible model of delivery of specialist palliative care, in order to better meet the needs of paediatric oncology patients and their families. While it is recognised that children dying of cancer may experience significant suffering1, they remain less likely to access children’s hospice services than paediatric patients with non-malignant disease2. Some services offered by children’s hospices3, such as overnight respite, may be less attractive to them.
Methods Over a three-year period, the hospice team worked with the paediatric oncology service to develop and evaluate a flexible ‘menu of services’ including:
in-reach visits to the oncology ward,
increased Hospice outreach capacity to support complex symptom management,
rapid discharge for end-of-life care,
24hr access to specialist palliative care advice by phone,
family support and bereavement services.
Data was collected from hospice and hospital; on uptake of palliative care, nature and timescale of care, and place of death.
Number of children choosing end-of-life-care from hospice services doubled during the study period >90% of children dying 2012–2013 accessing hospice services
Hospice outreach by a doctor or nurse were accepted by over half
Hospital in-reach by palliative care staff has significantly increased
The time from referral to death ranged from <24 h to >1year, with most children being under our service for a number of weeks
Children with brain tumours and neuroblastoma most represented
Children with haematological malignancy had longest interval from diagnosis to death and were least likely to accept a referral
89% out-of-hospital death rate achieved3
All the patients had an advance care plan and symptom management plan in place
96% achieved chosen place of care3
Conclusions By working more closely with our local oncology unit, we have developed a service which appears to better meet the needs of children dying from cancer.
Easing of suffering in children with cancer at the end of life: is care changing? Wolfe J, et al (2008) Journal of clinical oncology 26(10): 1717–1723
How and when to refer a child for specialist paediatric palliative care. Harrop E & Edwards C (2013). Arch Dis Child Ed & Pract (Epub)
Palliative care services for children and young people in England. Craft & Killen, DoH, 2007