[Lara Rust]

#88806

An interesting theme and topic I noticed in these discussions and articles has been the psychological distress experienced by children and families in palliative care. This is such an important aspect to acknowledge because distress, whether from pain, fear, or medical interventions, can directly impact a child’s sense of dignity.

But, it is not only the child who experiences distress, parents and healthcare practitioners are profoundly affected too. For parents, the emotional toll of watching their child endure a life-limiting illness can influence decision-making, sometimes leading to choices driven by fear rather than what may be best for the child’s well-being. Anxiety and grief can make it difficult to navigate conversations about treatment, pain management, and end-of-life care, which in turn affect the child’s experience.

Reading about others’ experiences indicates healthcare practitioners also carry a heavy emotional burden. The responsibility of caring for a seriously ill child, managing pain, and having difficult conversations with families can take its toll. The instinct by both parents and healthcare professionals to protect a child from distress could potentially conflict with preserving their dignity, especially when it comes to open and honest communication.

Preserving dignity in paediatric palliative care means more than just symptom management; it requires a trauma-informed approach that acknowledges the emotional and psychological challenges faced by children, families and healthcare teams. By minimising trauma, we can help children feel safer, more in control, and respected in their care, while also supporting parents and healthcare providers in making informed, compassionate decisions.

Trauma-informed care as a path to preserving dignity can ensure honest communication where children can feel safe to express their pain and emotions without fear of additional distress. I believe that as healthcare providers, we can ensure that dignity remains central to every decision by balancing medical necessity with the emotional well-being of both the child and those caring for them.

[Susan Sander]

#88888

Hi Lara

An important point you brought up was the emotional well-being and care of healthcare practitioners as well. I believe this is so important because, as is said so often in the helping professions, you cannot pour from an empty cup. That’s why I believe a team approach is the best way to do this. Not only because each one has a different skillset but also to look out for one another and step in to protect each other if need be. Thank you for bringing this into the discussion!

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