[Privilage Makanda-Charambira]

#88883

My interpretation of dignity in the context of palliate care is ‘maintaining a sense of self worth’. It involves a broad look not only at the child but also the family. Dignity does not only involve managing symptom distress as well as psychological distress, but incorporates many aspects which are intimately linked to Children’s Rights. The articles really opened my eyes to the importance of involving the child’s opinion in the provision of palliative care. However for this to happen we need to establish a way to explain the condition to the child in a way that they will understand depending on their age. Even though the child is critically ill, they still have a right to play, education, hope, generativity, and also longs to be remembered after their passing. What also hit home was the importance of acknowledging regret. Its important to reflect with the child on things that could have been but can never be due to the condition. We need not ignore such matters and sweep them under the rug but rather bring them out, reflect, talk about them as this helps in emotional healing for the child. We balance this by celebrating what the child has managed to accomplish in their short lived lives.
However maintaining dignity in paediatric palliative care can be a challenge if the child is non verbal. We then have to interpret their behavior to get an idea of how much pain they are in, but we cannot really know the emotional turmoil they may be going through. It is also difficult to provide dignity if there are family disputes. The parents may disagree on what their interpretation of ‘dignity’ for their child and this puts the medical team in the middle. for example whether the child is to receive palliative care in a hospice or at home, how aggressive the medical team has to be in treating the illness, etc. For proper dignity to be achieved the health team as well as the parents/caregivers have to be on the same page, with similar goals and targets.
Another challenge in the provision of dignity is having poorly trained health care workers. The articles showed me that as a doctor there are things I never used to focus on when treating children with life-limiting or life threatening conditions. Without this knowledge we only focus on the condition and miss the other needs of the child and family that help maintain their ‘self-worth’.

[Susan Sander]

#88886

Hi Privilage

Thank you for highlighting the dilemma of ensuring dignity when a child is non-verbal. This is always a challenging scenario, not only for ensuring dignity in care but for knowing when and how they experience pain or what concerns they may have. There is no easy answer to this, and it is also very case specific. I think the best way to approach this would be to show respect and dignity through the way you engage with the child and care for them. Do you still look at them when you work with them etc. It’s like developing an extra set of senses to try and understand despite of a lack of words or communication. Thank you for making me think about this a bit more!

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