Difference between children’s and adult palliative care
Palliative care for children is different from adult palliative care in a number of significant ways:
- The number of children who die is small compared with the number of adults.
- Many of the conditions are extremely rare with diagnoses specific to childhood, although the child may survive into early adulthood.
- The timescale of childhood illness is generally different from adults; palliative care may last only a few days, weeks or months, or may be delivered on and off for a number of years.
- Many of the conditions are genetic, and therefore more than one child in the family may be affected.
- Children’s palliative care embraces the whole family. Family members, especially parents and siblings, will be vulnerable as they face the changes in life that the child’s diagnosis creates, and as they anticipate bereavement.
- Children’s palliative care providers need to be aware of the continuing physical, emotional and cognitive development throughout childhood and respond to each child’s changing levels of communication and their ability to understand.
- Provision of education and play when a child is seriously ill is essential. This introduces an additional dimension which adds to the complexity of care provision.
Difference between palliative care for children and disabled children’s care
Many children and young people with palliative care needs are disabled; however the risk or certainty of death in childhood adds a degree of complexity and urgency to their care, and the support needed for the family.
If the social and emotional needs of life-threatened or life-limited children are to be fully met, these children and families must be recognised as a separate group and helped to fully integrate into their local communities. This means that they should have equal access to universal services, as well as access to the specialist services that they may require. Within this, it should be recognised that due to the particular nature of the illness trajectory of life-limited and life-threatened children, their social, emotional and physical needs, and hence their need for services, do fluctuate.
Categories of life-limiting and life-threatening conditions
Life-limiting and life-threatening conditions affecting children and young people can be defined broadly into four groups. Categorisation is not easy and the examples used are not exclusive. Diagnosis is only part of the process: the spectrum and severity of the disease and subsequent complications, as well as the needs of and impact on the child and family, also need to be taken into account.
- Category 1
Life-threatening conditions for which curative treatment may be feasible but can fail
Access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services.
Examples: cancer, irreversible organ failures of heart, liver, kidney.
- Category 2
Conditions where premature death is inevitable
There may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.
Examples: cystic fibrosis, duchenne muscular dystrophy.
- Category 3
Progressive conditions without curative treatment options
Treatment is exclusively palliative and may commonly extend over many years.
Examples: batten disease, mucopolysaccharidoses.
- Category 4
Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications and likelihood of premature death
Examples: severe cerebral palsy, multiple disabilities, such as following brain or spinal cord injury, complex health care needs, high risk of an unpredictable life-threatening event of episode.
Introduction to the care pathway approach
Every child requiring palliative care will have very different needs and circumstances. The Together for Short Lives pathway approach is designed to put children and families at the centre of the planning process, with the aim of developing integrated services in response to individual needs.
The core elements of children’s palliative care services provided along the care pathway are:
- A truly integrated children’s palliative care service
A system where all services work together in a co-ordinated way that enables both local accessibility for support and management of everyday problems, and access to specialist services for the care of more complex symptoms.
- Universal services
Children and young people with palliative care needs are likely to be known to universal services such as GPs and health visitors. These services should ensure that support is accessible and work effectively together. Early recognition of need by GPs and multi-agency assessments can ensure earlier referrals to specialist services
- Targeted services
Appropriate, targeted support should be offered at an early stage and made accessible to families when they need it, to reduce future stresses and strains. Such support should include: emotional and psychological support; key workers; short breaks; practical support; provision of specialist equipment and transport.
- Specialist support
Children and young people with life-limiting conditions often require specialist support for their medical and nursing care. They may also need specialist social and practical support. Dieticians, occupational therapy, specialist play and physiotherapy are all an integral part of paediatric palliative care. Professionals from psychological and emotional support services may also play a role in supporting families. This support should be available from diagnosis through to the child’s death and beyond.