Paediatric palliative care
Paediatric oncologist, Diane Mackinnon, advocates paediatric palliative care, stating that good palliative care helps children live happily and make memories.
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Any child diagnosed with a life-threatening or a life-limiting condition will benefit from palliative care. Palliate comes from the Latin root palliare, meaning to cloak: the aim of palliative care is to optimise quality of life, mitigate suffering and help children and their families live well in the face of serious illness. It’s the active total care of a child’s body, mind and spirit and involves an evaluation of a child’s psychological, physical, and social distress together with providing support to their family. Palliative care continues regardless of whether a child receives treatment directed at the disease. It includes the family and the community and should be in accordance with the family values.
There is a misconception that palliative care is end-of-life or terminal care. Palliative care should start when a life-threatening illness is diagnosed. It may be given in conjunction with curative interventions and may at times include end-of-life care and bereavement.
Communication is the foundation of quality palliative care. In Dr Eric Cassel’s words, “similar to scalpels for surgeons, words are palliative care physicians’ greatest tool. Surgeons learn to use their tools with extreme precision because any error can be devastating. So too should clinicians who rely on words.”
The sad truth
In our hearts, we all believe that children shouldn’t die and as much as we wish otherwise, the sad truth is that sometimes they do. Children know when they are sick and not getting better, and their capacity to understand and cope shouldn’t be underestimated. Sometimes we may want to protect them from the truth and don’t talk directly to them, leaving them feeling alone and isolated. Palliative care helps to create an environment for respect, compassion, and honest communication. Although open communication is encouraged, it shouldn’t be forced, and the child’s lead should always be followed. We should only answer what the child asks and be careful of over responding out of our own anxiety. They may move back and forth between wanting to know all the details about their illness to not wanting to even acknowledge they are sick.
In oncology, palliative care is mostly provided by the oncology team (doctors, nurses, social workers, psychologists, chaplains, and bereavement counsellors). In some cases, with difficult to control symptoms or complex psychosocial stressors, palliative care specialists may be consulted for additional support.
Palliative care in the community is an option for families with terminally ill children, enabling the child to remain at home in familiar surroundings with the people who love them the most.
Palliative care tasks include
- To define the goals of care in discussion with the family, to provide care and support that respects their goals and wishes.
- Planning for what if
- Defining quality of life and suffering, which is different for everyone, and defined by the patient and their family.
- To provide pain relief and symptom management.
- To provide psychosocial support for the child, family, and community. The adult’s response influences the child’s response, so in supporting the adults we’re supporting the child. Siblings often feel emotionally abandoned because the ill child receives all the time and attention, and they also need to be supported.
- To provide spiritual support.
- To provide end-of-life care.
- To provide bereavement support.
Parents aren’t supposed to outlive their children and the loss of a child is profound no matter their age. You grieve for your child, and all the hopes and dreams you had for them, the potential that won’t be realised and the experiences you’ll never share. You may even lose your identity as a parent. Grief reactions are intense, may last longer and families need support at this time. Terminal illness presents a contradictory challenge, it’s our nature to want to live. Children still want to live, laugh and play, and good paediatric palliative care helps them live happily and make memories.
MEET THE EXPERT – Diane Mackinnon
Diane Mackinnon is a paediatric oncologist at Chris Hani Baragwanath Academic Hospital. She has over 20 years’ experience of journeying with children and adolescents diagnosed with cancer or life-threatening blood disorders and their families.
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