Photo (used with permission): Mum, Kjersti Skanke, with her sons Aksel and Eli. Aksel was diagnosed with cancer aged one and underwent treatment for three years. He is now in remission.
Friday 15 February 2019, was International Childhood Cancer Day (ICCD). The focus of this year’s ICCD is on reducing cancer and treatment related pain. (ehospiceUSA shares a post from ehospice International Children’s edition.)
Marked on calendars around the world, the day reminds us that cancer affects people of all ages and, without exception, dramatically changes the lives of all affected children, their families and loved ones.
The mother of a child with a cancer diagnosis once said, “The day you get told your child has cancer is the most unnatural day of any parent’s life. From that day forward, nothing is the same, your life and the life of your children is changed forever, because from that day forward you share your life with cancer.”
The International Children’s Palliative Care Network (ICPCN) believes that children and families faced with a cancer diagnosis should be provided with the very best care possible and should never have to walk this difficult journey alone. They should be provided with the support of people who fully comprehend the challenges they will face and are trained to do everything possible to ease the burden the disease bestows on the affected children and those that love them.
Critical gaps in the palliative care response
Aksel in hospital
Through ignorance and lack of training, there are still critical gaps in the palliative care response to children with cancer. Too many medical professionals hold on to the mythical belief that palliative care is only appropriate when all curative measures have failed, leading to patients and families missing out on the comprehensive, coordinated and compassionate care that a palliative team provides, irrespective of the outcome of the treatment.
Describing the difference it made to experience the care and support of Durban based Umduduzi Hospice Care for Children, Kjersti Skanke, mother to 4-year-old Aksel, diagnosed with Acute Myeloid Leukemia (AML) a week before his first birthday says, “The loss of my brother and the subsequent near death of my son were life-changing experiences that brought me insight and wisdom. Palliative care provided guidance, reassurance and comfort in a time of insecurity and confusion – for my child and my family. It gave my son the emotional support and physical comfort he needed and allowed us to reach peace and acceptance with the outcome of his treatment.”
Enhanced quality of life
Dr Julia Ambler, Paediatric Palliative Care Doctor and Deputy Director of Umduduzi says, “We strongly recommend that a palliative care team be introduced to the child and the family at the earliest possible time after diagnosis. Doing this ensures that the child’s quality of life is enhanced through adequate pain and symptom management and they are provided with relevant support and therapies to help them come to terms with their illness and its possible outcome.”
Palliative care also addresses any social, psychological and spiritual issues the child and family members face at this difficult time.
Effective pain control and use of opioids
“Effective pain control is an area of expertise within paediatric palliative care,” says Dr Ambler. “Children with cancer should be provided with the best possible treatment to ensure that their pain and distressing symptoms are addressed.”
She goes on to say, “However, we still experience certain barriers to this, including the stigma around prescribing and using opiates for children. In addition, the lack of pain relief medications, such as morphine and opioids, in paediatric formulations needs to be addressed.”
Recognise the value of palliative care for children with cancer
On this International Children’s Cancer Day, ICPCN calls upon health authorities around the world to recognise the value of palliative care in the treatment of children with cancer and to make the provision of children’s palliative care a standard response to a child’s cancer diagnosis. The organisation also calls for a concerted effort to be made to overcome the stigma associated with the use of opioids in the treatment of pain in children.
Prof Julia Downing, Chief Executive of the ICPCN says, “We ask that children’s palliative care be integrated into all public health systems, that specific policies be developed, that funds are allocated and relevant training is provided. We believe that this will ensure that a child with a cancer diagnosis is given the best chance to experience a better quality of life throughout the duration of their illness, and, should treatment fail to cure the disease, that the child and family will be provided with compassionate and qualified support at the end of life and during the period of bereavement.”
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