Re: Using end of life care pathways for the last hours or days of life
Amongst the recent negative media attention and controversy surrounding the Liverpool Care Pathway, we would like to draw attention to the positive news stories that are quietly emerging around an increasingly relevant and important aspect of palliative care, that of children and young people with life-limiting illness.
During the Asian and Pacific Royal Tour 2012, the Duchess of Cambridge delivered her first official speech, in which she described paediatric palliative care as “a lifeline to families at a time of great need.” The paediatric palliative care charity, Together for Short Lives is one of six named charities for the ITV Text Santa fundraising campaign, a campaign which many of our patients will follow and donate to, even if just by buying a Santa hat on their weekly shop in ASDA.
In paediatric palliative care we encounter one of the most emotional, complex and ethically challenging scenarios that exist in clinical medicine. The death of a child is devastating; children are not supposed to die, and parents do not expect to outlive their child. But just as it is important to raise the profile of Together for Short Lives in the public domain, it is important to raise the profile of the work being done around Advance Care Planning for children and young people with life-limiting illness.
There are increasing numbers of children and young people with complex, life-limiting conditions living in the community. Department of Health statistics estimate that there are around 20,100 children and young people (aged 0-19 years) who require access to palliative care services in England (1). 3,900 (67%) of the estimated 5,800 children who die in England per year will have had palliative care needs. Around 10,400 young adults (aged 20-39 years) die each year, and of these, around 4,200 (40%) will have been diagnosed with a life-limiting condition before their 19th birthday (1). With advances in paediatric medicine, the mortality rate is falling and an increasing number of children are outliving their life expectancies and transitioning in to adult palliative care services. All those involved in providing palliative care in primary and secondary care are likely to become involved in the care of these young adults.
Advance Care Planning is a core element of national strategies for children including the National Service Framework for Children, Young People and Maternity Services (2) and the Department of Health document, “Better Care, Better Lives (3).” However, just as Boyd and Murray describe for adult palliative care pathways (4), Advance Care Planning in paediatrics is an under-researched area and an evidence base is currently lacking in the NHS. Most existing research has focussed on children with cancer rather than other life-limiting conditions. These studies suggest that home is the preferred place of care for both parents and children, who can be in familiar surroundings, with professional support from those known to them (5, 6). Outcomes for families are thought to be better with the delivery of choice, and the provision of end-of-life care at home (7, 8).
In 2008, the Confidential Enquiry into Child and Maternal Health (CEMACH) published its pilot study “Why Children Die”(9). The study showed that 32% of children who had died had developmental delay, impairment or disability, and a further 45% had complex needs or existing illnesses. 73% of deaths occurred in hospital, 19% at home and only 2.6% in hospices. This trend was also described in Department of Health end-of-life statistics (1). One of the key recommendations of the CEMACH report was that there is an opportunity to improve practice when life-limiting illness is recognised, in terms of future terminal care planning and delivery, at home or in a hospice (9).
The important themes around Advance Care Planning and areas for potential improvement in paediatric palliative care mirror those that exist in adult palliative care. A wealth of expertise and good practice exists in both fields. There is a need for wider public debate and greater sharing of knowledge and experience between paediatric and adult physicians in this area, from both primary and secondary care settings, to achieve the goal of “a lifeline to families at a time of great need.”
1. Department of Health. Palliative Care Statistics for Children and Young Adults. London: Department of Health; 2007.
2. Department of Health and Department for Skills and Education. National Service Framework for children, young people and maternity services. Disabled children and those with complex health needs. London: Department of Health; 2004.
3. Department of Health. Better Care: Better Lives. London: Department of Health; 2008.
4. Boyd K, Murray S. Using end of life care pathways for the last hours or days of life. British Medical Journal. 2012;345.
5. Goldman A, Beardsmore S, Hunt J. Palliative care for children with cancer--home, hospital, or hospice? Archives of disease in childhood. 1990;65(6):641-3. Epub 1990/06/01.
6. Craft A, Killen S. Palliative Care Services for Children and Young People in England: An Independent Review for the Secretary of State for Health. . London: Department of Health, 2007.
7. Black D. The Dying Child. British Medical Journal. 1998;316:1376-8.
8. Chambers EJ, Oakhill A, Cornish JM, Curnick S. Terminal care at home for children with cancer. British Medical Journal. 1989;298:937-40.
9. Confidential Enquiry onto Maternal and Child Health. Why Children Die: a pilot study (2006). London: CEMACH, 2008.