Mum, Kjersti Skanke, with sons Aksel and Eli. Aksel was diagnosed with cancer at age one and underwent treatment for three years. He is now in remission.
Today, Friday 15 February 2019, is International Childhood Cancer Day (ICCD). The focus of this year’s ICCD is on reducing cancer and treatment related pain.
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
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 Leukaemia (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.”
ICPCN
The International Children’s Palliative Care Network (ICPCN) is a network of organisations and individuals working in children’s palliative care and believes that the total needs of life- limited children and their families should be met to encompass physical, social, spiritual and developmental aspects of care. To find out more about children’s palliative care worldwide please go to www.icpcn.org
ICPCN’s Vision
To live in a world where children’s palliative care is acknowledged and respected as a unique service, and every child and young person with life-limiting or life-threatening conditions and their families can receive the best quality of life and care regardless of which country they live in. The International Children’s Palliative Care Network (ICPCN) shares a vision that the total need of life-threatened or life-limited children should be met to encompass physical, emotional, spiritual and developmental aspects of care.
ICPCN’s Mission
Our mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative care services, and sharing expertise, skills and knowledge.
ICPCN’s Aims
- To help services across the world to develop and meet the total care and support needs of life-limited children and their families.
- To advocate and raise awareness of children’s palliative care and the specific needs of life-limited or life-threatened children and their families.
- To facilitate communication and sharing of resources, information and research worldwide, and to provide a ‘one stop shop’ for information relating to children’s palliative care.
- To campaign for the global development of children’s palliative care services.
- To enable the sharing of expertise and information between children’s palliative care practitioners.
- To increase the international evidence-base for children’s palliative care through education and research.
For more information on this press release, please contact:
Sue Boucher
Director of Communications
ICPCN
Mobile: +27 (0)82 897 4420
Email: sue.boucher@icpcn.org
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