We have tried to answer some frequently asked questions (FAQs) about children’s palliative care below. Should you have a question and can’t find the answer on our website, please email us and we will do our best to assist you.
What is children’s palliative care?
Also known as paediatric palliative care, children’s palliative care 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 a pain free and peaceful death and providing support in bereavement. Find more information and the WHO definition here.
What is perinatal and neonatal palliative care?
Perinatal palliative care is the holistic, multi-disciplinary care for infants, women and families following antenatal or postnatal diagnosis of life-limiting conditions, providing integrated ongoing support through pregnancy, delivery, postnatal and where appropriate, continuing bereavement care.
Neonatal palliative care is a unique multidisciplinary approach for the care of newborns affected by life-limiting or complex medical conditions with uncertain prognosis.
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 the UK/European model of a children’s hospice 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 children 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. There are only a handful of dedicated children’s hospices in South Africa due to the enormous running expenses such facilities incur.
What is the difference between the terms ‘hospice’ and ‘palliative care’?
In South Africa 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.
Where is children’s palliative care provided in South Africa?
Where palliative care is provided depends on available resources, the unique needs of the child and their family, and the accessibility of services. In South Africa, most children receive palliative care at home and are visited by a home based carer trained in children’s palliative care. However, palliative care can be offered in a clinic, a hospital, and where available, in a children’s hospice. There are a number of adult hospices who also offer care to children. You can find adult hospice service on the HPCA website. For more information on children’s palliative care go to our directory of services or locate a CPC service on our interactive map.
How is children’s hospice and palliative care funded in South Africa?
Most children’s palliative care services receive no money whatsoever from the national or provincial departments of health and need to raise funds to provide their services from private sources. This puts a major stress on these services whose staff find themselves using precious time raising funds rather than focusing solely on providing very necessary care to children and families.
Who provides children’s palliative care?
Due to the holistic nature of children’s palliative care it is ideally provided by a multidisciplinary team of people who have received appropriate training. 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 are not restricted to paediatricians, doctors, nurses, psychologists, social workers, counsellors, home based carers, teachers, dieticians, physiotherapists, occupational therapists, child life specialists, play therapists, spiritual leaders, music and art therapists.
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. Cancer 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. Another commonly used term in children’s palliative care is a life shortening condition, thus the name of the UK charity, Together for Short Lives.
How does children’s palliative care differ from adult palliative care?
While there are similarities in the provision of adult and children’s palliative care, there are many distinct differences that make it necessary for specific training in the provision of this care. 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 to 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.
Refer also to the Principles of children’s palliative care.
What conditions are appropriate for children’s palliative care?
It is often mistakenly thought that children’s hospice and palliative care services are only for children with cancer. In fact, cancer patients constitute a reasonably small number of the patients being seen by our palliative care services. This is partly due to there being a number of organisations in South Africa that provide excellent supportive care for children with cancer and their families. Genetic conditions, and conditions that affect the child’s heart, kidney and lungs are common reasons for accessing 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.