Hospital still the most common place of death for children with cancer in England

Categories: Research.

The study, funded by Marie Curie, looked at how the place of death in children and young people with cancer in England has changed over the period 1993-2014, following a number of national initiatives to improve end of life care since the late 1990s.

The paper, published this week in BMC Cancer, examined data from the death registration database of the Office for National Statistics, covering 12,774 children and young people (up to the age of 24) whose deaths were recorded as being due to or related to cancer.

Over the period 1993 to 2014, hospital deaths dropped slightly from over 50% to 45%, while the proportion of home deaths fluctuated around 40%. Deaths in hospices more than doubled from 6% in 1993-2000 to 13% in 2005-2014.

Those aged up to 19 years were more likely to die at home than young adults. Young patients with haematological cancer such as leukaemia or those with a combination of conditions had a higher chance of hospital death.

Living in a deprived area was associated with a reduced chance of dying at home but did not affect rates of hospice deaths.

The study did not look at the preferences of the patient and family members, or indicators for clinical appropriateness of the place of death. However, as previous studies have shown that a patient and/or their carer’s preference for where to die is highly dependent on the level of care and support available, the authors conclude that more initiatives are need to enhance end of life support and capacities at home and in hospices.

Need to enable greater choice for children and young people at the end of life

“Our findings show that further work is needed to enhance end of life care support to enable more children and young people to die at home or in a hospice, should they express a preference to do so,” said lead author, Dr Wei Gao, from the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s College London.

“We know that children and young people with cancer and their carers are particularly concerned with being able to alleviate pain and other symptoms to ensure they are comfortable in their last weeks; however, if these needs can’t be met in different care settings this results in the majority of deaths happening in hospital.

“The use of hospices, although on the rise, is still rather low in most English regions, despite their potential as a suitable alternative to hospital in helping to manage the symptoms of cancer.

“More research is needed on how best to expand the use of hospice services. Given that home and hospices are usually preferred for young cancer patients to spend their last moments of life, the healthcare system needs to be better equipped to meet such needs.”

The study was welcomed by Barbara Gelb OBE, CEO at Together for Short Lives, who highlighted the need for comprehensive children’s palliative care in order to better offer people choice over where they spend their final days, but also pointed out that for some hospital is where they want to be:

“These children often have a very different care journey to those with non-malignant conditions, with many developing close contacts with hospital teams, for example, which could influence chosen place of death. The important thing is that professionals encourage these families and young people to explore, talk about and plan for their end of life choices – and find out what is right for them.

“There are many factors to consider, including how pain and potentially distressing symptoms can best be managed, whether the location can accommodate equipment and medical supplies, and what impact the situation will have on the wider family. We need a flexible approach and families need to know they can change their minds, even if this happens close to the end of their lives.

“Real choice also depends on comprehensive children’s palliative care being in place which can support families around the clock, including at evenings and weekends. This means joined up services working across the statutory, voluntary and private sectors and across different settings.”

‘Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014’ by Gao et al is published in BMC Cancer.

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