Protecting the Quality of Life for Sick Children: The Role of Palliative Care
How does one help a child diagnosed with a life threatening or incurable illness that will shorten their life? For parents this can be an agonising journey as they grapple with keeping their little one comfortable and free of pain. There are recognised organisations that assist children and their families with guidance and support during such a difficult time. This type of care is called ‘children’s palliative care’ or ‘paediatric palliative care’ and includes emotional, spiritual, psychological and social support for the child from health-care professionals and caregivers.
In South Africa, children’s palliative care is mostly provided in a child’s home or in a hospital setting. These children (or babies) will have a team of qualified professionals providing the best support possible to ensure a good quality of life for the child and their families.
According to Dr Julia Ambler, co-founder and medical director of Umduduzi Hospice Care for Children, family members caring for seriously ill children face many challenges, and palliative care programs can help with some of these. “Children’s palliative care cannot claim to protect the quantity of a child’s life. But children’s palliative care can claim to protect the quality of a child’s life, and of course to relieve suffering,” she says.
Palliative care is helpful for children coping with diseases like cancer, neurological conditions, and heart, lung, kidney, or liver disease. Parents and other caregivers also play an important role in the child’s health. They know their child better than anyone else, so are a partner with the palliative care team. They all have the same goal — providing the best care for your child.
Less than 5% of children in South Africa (and even less in Sub-Saharan Africa) have access to palliative care because of a lack of awareness, training and sufficient service providers. Those who do provide this supportive care are all donor-reliant in order to offer completely free care. Globally it is estimated that 21.1 million children need palliative care.
Because of the holistic nature of this kind of care (body, mind and spirit) the medical care team can include doctors, pain management specialists, nurses, social workers and therapists, e.g., physiotherapists, speech therapists, etc. The aim of the team is to allow the child to have a good quality of life. A longer life span is often a positive side effect of good palliative care.
At the end of a child’s life, the team will control pain and symptoms while also supporting grieving family members. Palliative care is designed to meet the unique needs of each child and family. Families can tailor their child’s care and get as much or as little help as they want.
- Palliative care doctors provide direct medical care and manage the treatment of physical symptoms, such as pain, nausea, tiredness, shortness of breath, and trouble sleeping
- Nurses assess the complex needs of the patient and family, facilitate communication with the care team and within the family, and coordinate care among the care team
- Social workers offer counseling, help families manage the health care system, and provide information about and referrals to other resources
- Physical therapists and occupational therapists help children feel more comfortable and teach them how to best use their physical abilities
This specialised field of paediatric care is not widely practised in South Africa. The Lenmed Group is committed to partnering with PatchSA to bring their important work to sick children across Southern Africa. On 8 October 2021 we will be supporting PatchSA on their annual Hats On 4 CPC Day, to raise awareness and funds for children with life-limiting or life-threatening illnesses.
“There can be few things more important or more valuable in life than to relieve the suffering of a child and to help the child live the life they have as fully as possible.” Julia Ambler, MD.
For more information please contact
Disclaimer: Any information contained here is merely a guideline. Always visit your healthcare practitioner for any health-related advice or diagnosis.