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Although it is acknowledged that there are similarities in the principles of palliative care for adults and children, it is crucial to emphasise underlying differences. Often service users, providers and commissioners often make assumptions about the two sectors. ACT has now developed a factsheet to clarify the similarities and differences between children's and adults palliative care services.
Read on to find out how ACT defines these areas of work; you can also download a PDF of "Children's and Adults Palliative Care: Similarities and Differences" here.
Children's Palliative Care and Adult Palliative Care: Similarities and Differences
Although it is acknowledged that there are similarities in the principles of palliative care for adults and children, it is crucial to emphasise underlying differences. Often service users, providers and commissioners make assumptions about the two sectors; this document aims to help to clarify the similarities and differences.
1. Palliative care is:
Children’s Palliative Care can be defined as:
“An active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on the enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement.”
ACT (Association for Children’s Palliative Care) and the Royal College of Paediatrics and Child Health (RCPCH), 1993.
Adult Palliative Care can be defined as:
“…the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.”
World Health Organization. National Cancer Control, Programmes: policies and guidelines. Geneva: WHO. 2002.
2. Hospice care is:
Children’s Hospice Services
Children’s hospice services provide specialist respite, emergency, palliative and end-of-life care for children with life-limiting conditions, either in the setting of a purpose built hospice or within the child’s own home. “Children’s hospice care teams bring together a range of professional skills and services under one roof and offer care and support to all family members. Children’s hospice services offer a rich array of specialist children’s palliative care delivered through day care, hospice at home, specialist respite, telephone/advice, bereavement support, terminal care, emergency care and contact/keyworker visits. Bereavement support is provided to the immediate family, extended family and schools and delivered both pre and post bereavement via a number of different models. These include activity weekends, workshops and one-to-one work. ACH (Association of Children’s Hospices), Children’s Hospice Services, 2006.
All hospice care is free of charge.
Adult Hospice Services
Adult hospices care for the whole person, aiming to meet all needs – physical, emotional, social and spiritual. At home, in day care and in the hospice, they care for the person who is facing the end of life and for those who love them.
Nearly half of all people admitted to a hospice return home again. The average length of stay is just 13 days. All care is free of charge. Within hospices you find a range of services – pain control, symptom relief, skilled nursing care, counselling, complementary therapies, spiritual care, art, music, physiotherapy, reminiscence, beauty treatments and bereavement support.
Help the Hospices, source www.helpthehospices.org.uk, 2007
3. Hospice service provision
Children’s Palliative Care
Care is provided over longer period of time with regular short breaks and support for whole family. The service is often involved with the child and their carers from diagnosis to end-of-life.
Adult Palliative Care
Less respite and more focus on end of life care and symptom management. The hospice service usually only becomes involved as the disease/condition progresses.
4. Prevalence of Hospices
Children’s Palliative Care
40+ services across UK. As there are few services across the UK families often have to travel considerable distances to their geographically closest hospice.
Adult Palliative Care
Generally adult hospices are available locally across the UK.
5. Conditions
Children’s Palliative Care
Those children and young people accessing children’s palliative care services will have a wide range of conditions including some cancer conditions. Leukaemia is most common cancer in children.
A variety of childhood conditions are rare, and length of illness can vary greatly from days to years. The child may survive into early adulthood, extending palliative care over many years.
Adult Palliative Care
Adult palliative care tends to have a cancer focus, but is expanding to include a wider variety of conditions. 64% of cancer cases occur in those aged 65 and over.
6. New technologies
Children’s Palliative Care
New technology has lead to improved survival rates e.g. more premature babies are surviving and new techniques enable children to live for longer e.g. assisted ventilation for young men with Duchenne Muscular Dystrophy.
Adult Palliative Care
New technology and techniques lead to increased survival rates e.g. new cancer drugs and as more children with life-limiting conditions survive into adulthood, they will need adult palliative care services.
7. Links to other sectors
Children’s Palliative Care
Strong links to disability and specialist chronic illness groups.
Adult Palliative Care
Strong links to agencies working with older people.
8.Transition
Children’s Palliative Care
The population of young people with life-threatening and life-limiting conditions is growing as many chronic progressive conditions now reach a crisis during late adolescence and young adulthood. Many young people have conditions which were formerly limited to childhood, and there are therefore limited relevant services that have been developed in the adult sector.
Adult Palliative Care
There is an increased demand on adult services from young people who are moving from children's services. There are few dedicated services for young people.
9. Family issues
Children’s Palliative Care
Palliative care affects the whole family, with the burden of care falling upon parents and siblings or grandparents. Some illnesses are ‘familiar’ and more than one child may be affected. In most cases the direct family are the primary carers for the child/children. Siblings will also have support needs.
Adult Palliative Care
Adults may not have family carers. Adults may also be carers for children in the family.
10. Developmental issues
Children’s Palliative Care
Children continue to develop physically, emotionally and cognitively throughout their illness; this affects both their medical and social needs and their understanding of disease and death.
Adult Palliative Care
Generally deterioration (physical/psychological) is associated with the aging process.
11. Community Support
Children’s Palliative Care
Children's community nursing service provision covers 85% of the UK (Royal College of Nursing, 2005) and does not always provide seven-day care. CLIC Sargent, Macmillan and other voluntary organisations also provide supportive care.
Adult Palliative Care
District nursing services widely available across UK and often available throughout the week. Macmillan and Marie Curie provide additional supportive care within the community.
12. Medical Care
Children’s Palliative Care
GPs are often unfamiliar with children's care and medical care is usually consultant led, often from tertiary centres, as many of the wide range of conditions are rare.
Adult Palliative Care
GPs are often involved in care and medical care is usually co-ordinated at local level.
13. Education/Employment
Children’s Palliative Care
Access to education is a legal entitlement for children. Often parents are unable to maintain full-time employment, as they are the key carers for their child. Many young people are unable to enter the employment market, as they are unable to find employers who are willing to invest in their employment or support their specialist medical leave.
Adult Palliative Care
By the time adults are referred to palliative care services, many will no longer be in employment because of their deteriorating health. The age group receiving palliative care services is predominantly older and many will already be retired from employment.
14. Commissioning of services
Children’s Palliative Care
There is often a lack of understanding of services needed and the multi agency provision adds to the complexity of commissioning services. The numbers of children affected are relatively small which means that commissioners may need to use a variety of processes to ensure the range of services are available for children and young people at local and regional level.
Adult Palliative Care
Commissioners may use a range of commissioning arrangements: including PCTs, in partnership with other local commissioning agencies; Local Specialised Commissioning Groups (LSCGs) at a population of 1-2 million; Specialised Commissioning Groups (SCGs) at a population of 3-5 million; and The National Specialised Commissioning Advisory Group (NSCAG) with top sliced funding from PCTs.
15. Funding
Children’s Palliative Care
Unable to identify NHS spend. Children’s palliative care services heavily rely on a large contribution from the voluntary sector.
Adult Palliative Care
Easier to identify NHS spend. Large contribution from voluntary sector.
16. Diversity issues
Children’s Palliative Care
Challenge of providing appropriate care to diverse range of cultures.
Adult Palliative Care
Challenge of providing appropriate care to diverse range of cultures.
17. Care pathways
Children’s Palliative Care
ACT (Association for Children’s Palliative Care) has developed pathways for Children’s Palliative Care and transitional care.The Department of Health is developing a continuing healthcare pathway, and ACT is contributing to this. The Liverpool Care Pathway for the Dying Child is being developed. Work on Gold Standards framework for children is underway. The Preferred Place of Care tool can be adapted for use in children's services.
Adult Palliative Care
There are a number of national pathways e.g. the Liverpool Care Pathway and the Gold Standards Framework.
The Preferred Place of Care is a nationally recognised tool for all palliative care patients used to record patients and carer’s wishes in relation to their care and ultimate place of death.
18. Place of death
Children’s Palliative Care
Children and young people are often unable to be supported to die in their preferred place of care e.g. home because of lack of community support.
Adult Palliative Care
Although over 50% of all patients wish to spend their final days at home, less than 20% in practice are actually able to do so.
Building on the Best, Department of Health, 2004
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