[Charne Cox (Loe)]

#85738

I know this wasn’t mentioned as one of the ethical dilemmas at the beginning of the forum discussion but I find this on of the most difficult dilemmas to deal with in my place of work.
Parents will 90% of the time ask us not to provide details to the children on their recovery pathways and their likelihood of walking again. This is difficult as we need the buy in of the child during the rehabilitation process. Our job is to make them as functional as possible with their new limitations but this is impossible to do if the child doesn’t know what their limitations are. An example of this is a child who now has a complete spinal cord injury and needs to learn new independence in a wheelchair. If they don’t understand why they are in a wheelchair they will not understand why they need to learn how to use the wheelchair and why pressure relief is so important.

We also have a concern when parents ask the healthcare team not to let the child know that someone that was in the car with them passed away ie a dad or a sibling. This is a lot of pressure for the team as the children ask questions. Often the families only want to give this difficult information when the child is home but we feel the best place to give it is in the hospital where they are monitored 24/7 and there is psychological support.

• This topic was modified 5 months, 2 weeks ago by Charne Cox (Loe).

[Sue Boucher]

#85812

Thanks for sharing this ethical dilemma, Charne. I am sure it is one that so many can identify with. Truth telling is crucial when building a relationship of trust with a child and it must go against your own moral principles to withhold the truth and even to have to lie to appease the parents. A logical move would be to offer counselling to the parents so that they understand the importance of honesty, but I know this is not always possible and they may not be open to it. Dr Justin Amery, who wrote the book “Children’s Palliative Care in Africa” gives these examples of responses to requests for collusion:
“I can see you would rather I didn’t discuss that with X. Can you share with me why you feel like that?”
“Perhaps we could work together to plan how much we can tell X, and to discuss what effects this might have on him/her.”

[Elmarie Mathews]

#85924

I’m so glad that you added this to the list- I find this extremely challenging to deal with. Although I feel that the course has taught me “convincing tools”to share with the parents, I find it difficult in the “waiting period”. eg. When a parent says “I hear what you are saying, but we dont’want him/her to know now” :(

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