Myth: Hospice and palliative care treatment for adults can be slightly adjusted to accommodate children.
Fact: While there are similarities, palliative care for adults cannot be adapted for children. Children need care that is appropriate to their condition/illness (many of which are not seen in adults), their size (which affects dosages), their age, their understanding of their conditions and its implications, and their spiritual and emotional awareness.
Myth: Children’s palliative care is only for children who have cancer.
Fact: 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.
Myth: Palliative care is only appropriate at the end of life.
Fact: Palliative care 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.
Myth: Children’s hospice and palliative care services can only be provided in well-resourced settings.
Fact: Palliative care is about improving the quality of life of a child and that child’s family by addressing their holistic needs making optimal use of whatever resources are available to the organisation providing the care. Most children receive palliative care in their own homes, considerably reducing the costs.
Myth: Accessing hospice and palliative care means that you are giving up hope.
Fact: In palliative care it is never said, “There is nothing more we can do.” Palliative care practitioners believe there is always something that can be done to help a child and that child’s family have a better quality of life, even when that life may not be long. Children and families are supported to find new and different goals to hope for and achieve.
Myth: Working in children’s hospice or palliative care services is sad and depressing.
Fact: There are moments of great sadness, however the field is not only rewarding, it also provides moments of great joy, fulfilment and delight. Palliative care is focused largely on helping the child and family to make the most out of life, and on improving the quality of that life.
Myth: Children should always be protected from the knowledge that they are dying.
Fact: It is instinctive for parents to want to protect their child from difficult truths, but practice shows that many children over the age of three have the intuitive knowledge that they are dying and wish to know the truth and be allowed to express their thoughts about it.
Myth: Children don’t want to talk about their death and what matters to them.
Fact: Often children do not discuss their own concerns and fears as they wish to protect their parents or carers from the distressing nature of these conversations. This conspiracy of silence can have a detrimental effect on the child’s physical and emotional wellbeing.