Here are some frequently asked questions and answers about children’s palliative care
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1. What is children’s palliative care?
Palliative care for children is holistic care delivered by a multidisciplinary team of people with the appropriate training. It provides tailored support to address the physical, spiritual, emotional and social needs of a child with a life-threatening or life-limiting condition and extends this care to the child’s family. It can begin at the time of diagnosis or at any point along the progression of the illness even when curative treatments are appropriate. Palliative care for children continues throughout the remainder of the child’s life, accompanies and supports the child and the family at the end of life and continues this support into the bereavement period, for as long as it is needed. The focus of care is on improving and enhancing quality of life, ensuring dignity in death and providing support in bereavement.
See the WHO Definition.
2. Where is children’s palliative care provided?
Where palliative care is provided depends on the resources available, the needs of the child and their family, and the ability of the service to provide care in various settings. Most children receive care at home. However, palliative care can be offered in a clinic, a hospital, and where available, some children and families are able to spend time in a children’s hospice.
3. What is a children’s hospice?
A children’s hospice also known as an ‘in-patient facility’, is a place in which children, and in some cases their families, are provided with around the clock care tailored to their unique needs from a multidisciplinary team of trained providers. The purpose of a child’s stay in a hospice can differ, depending on their particular needs and the resources available to the hospice.
In some instances the child and family will receive ‘respite’ care, the aim of which is to provide both the child and the family members with a short break of up to 2 weeks. The child has a break from their usual surroundings and routines and the family from the often ’round-the-clock’ responsibility of caring for a child with a complex, life-limiting or life-threatening condition. Some will enter a hospice to allow the medical team to stabilise pain and/or other distressing symptoms and others will choose to use a children’s hospice for end of life care.
4. Who is on a children’s palliative care team?
Due to the holistic nature of children’s palliative care it is ideally provided by a multi-disciplinary or inter-disciplinary team of professionals and other people who have received appropriate training in the field. The members on a children’s palliative care team will vary according to the needs of the child and family as well as the available resources of the organisation. Members of this team can include but is not restricted to paediatricians, doctors, nurses, psychologists, social workers, counsellors, teachers, dieticians, physiotherapists, occupational therapists, child life specialists, play therapists, spiritual leaders, music and art therapists. Where resources allow, families are assigned a ‘key worker’ who ensures a coordinated and timely response to their needs.
5. What is the difference between the terms ‘hospice’ and ‘palliative care’?
The terms ‘hospice care’ and ‘palliative care’ are often used interchangeably and in most instances mean the same thing. However, in the United States of America (USA) there is a distinct difference between the two terms with ‘palliative care’ being defined as holistic care provided to any person with a severe, complex, life-limiting or life-threatening condition and ‘hospice care’ being defined as care that is provided to those nearing the end of life.
6. What is the difference between a life-threatening and a life-limiting condition?
Life-threatening conditions are those where there is a possibility of a cure or remission, failure of which will lead to death. Caner is an example of a life-threatening condition.
Life-limiting conditions are those for which there is no cure and death is inevitable, either in childhood or early adulthood. Some life-limiting illnesses progress quickly and others may cause a slow deterioration over many years, such as Duchenne muscular dystrophy.
7. How does children’s palliative care differ from adult palliative care?
While there are many similarities between adult and children’s palliative care, there are also very distinct differences. Some of these include:
- A smaller number of children die each year compared to adults
- Many rare childhood conditions will never be encountered in the adult population
- Multiple family members can be affected by the same genetic condition
- The time span of a childhood condition can extend of a number of years which may require the patient to transition from child centred to adult palliative care services at some stage
- 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.
This information is adapted from the Together for Short Lives website. Refer also to the Principles underpinning children’s palliative care
8. What conditions are appropriate for children’s palliative care?
A Directory of Life Limiting Conditions in Children (Hain and Devins, Cardiff 2011) lists close to 400 conditions that are appropriate for children’s palliative care. This Directory is available to download as a PDF from the Together for Short Lives website.