Research update: more support needed for children and young people
4th October 2016
New research shows that the number of children and young people with cancer dying in hospices has risen in the last 20 years. But the most common place of death remains hospitals.
This study led by Dr Gao Wei of the Cicely Saunders Institute, and funded by Marie Curie, looked at how the place of death in children and young people with cancer 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 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%, whilst 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.
Dr Wei Gao, lead author from the Cicely Saunders Institute, said: “Home death rates have barely changed in the past two decades for this group. Deaths in hospitals are still the most common though we are seeing a shift towards more young people with cancer dying in hospices.
“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. 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.”
Dr Jane Collins, Chief Executive of Marie Curie, said: “Everyone with a terminal illness, regardless of age, should have the opportunity to die in the place of their choice, whenever this is possible.
“While children and young people are likely to have highly complex care needs, the high numbers dying in hospital suggest that not enough is being done to give them the opportunity to receive their care at home or in a hospice. While hospitals do incredible work for young people and their families affected by terminal illness, they are not always able to provide the best environments for the final days and weeks of life. We owe it to these young people and their families to ensure that time they have together is in the best place for them. There needs to be real focus from the NHS, local authorities and the Government now on reducing the number of young people dying in hospital who have no clinical need or preference to be there.”
The study did not look at the preferences of the patient and family members, or indicators for clinical appropriateness of the place of death. Nevertheless, 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.
Gao W, Verne J, Peacock J, Stiller C, Wells C, Greenough A, Higginson IJ. 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. BMC Cancer. 2016;16(1):727. doi: 10.1186/s12885-016-2695-1