There are many misconceptions about children's hospices
Hospices and palliative care is only appropriate at the end of life
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.
Support from children’s palliative care services does not extend to the whole family
Children’s hospices support the entire family, often over many years and at any stage of a child or young person’s illness. They offer the opportunity for healthy brothers and sisters to take part in activities including craft activity sessions and sibling support groups.
Children can only receive palliative care in settings such as a hospice or hospital
Palliative care is about improving the quality of life of a child and that child’s family by addressing their holistic needs. While children’s hospices can support families in their local hospice buildings, most children’s hospices provide a large proportion of support to children and their families in their own homes and in their community.
Children’s hospices are sad and depressing places
People often have a picture of children’s hospices as dark and depressing places. Yet if you walked into any children’s hospice you would be left in no doubt that they are bright, colourful and vibrant, focused on life – however short that may be.
They are a real home from home. Children, young people and families will tell you how much they love their hospice and the staff that work there.
While there are moments of great sadness, there are also 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.
Accessing hospice and palliative care means that you are giving up hope
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.
Hospice and palliative care treatment for adults can be slightly adjusted to accommodate children
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.
Children’s palliative care is only for children who have cancer
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.
Children should always be protected from the knowledge that they are dying
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.