[Kayla Noome]

#88938

Something that struck me this week while seeing a patient in the EC is the value of complete honesty and knowledge when it comes to all care, but palliative care specifically.
This patient was a young woman with very advanced Stage IV cancer who had never actually been fully informed as to her condition and prognosis. Her doctors had only told her that “there was nothing more they could do for her”. She understood this to mean that there was an allocated government budget for each patient and that her chemotherapy and surgery had exhausted that budget. She understood her current state to be as a result of financial rather than medical limitations. She also did not understand how her symptoms were related to her cancer, hence her visiting the EC twice in three days expecting a complete resolution.
We then began a conversation explaining that this was not something we could cure or that she would likely recover from but that we could definitely help with the symptoms she was experiencing. She then asked “I am dying, aren”t I? And I’ll need to come to terms with that”. From there we could contact the family and have a discussion about what her wishes were and how she wanted to do this and where she wanted to die.

This interaction helped me understand how knowledge can empower a patient and allow them to face and experience death with dignity.
One of the features A Tookman described in “Management of terminal pain and distress” is that a good death has occurred when the patient realised they were dying.
I think as healthcare professionals we have been equipped with knowledge and although it is not easy, to use this knowledge to explain to the patient what is happening to them and how it is affecting their bodies (and also being honest to say where we don’t know). Patch Adams put it well when he said “At what point in history did a doctor become something more than a trusted and learned friend who visited and treated the ill.” I really think open, honest communication can help lead to a dignified death.

There are, of course, challenges in this. In adult patients, it is first important to ascertain how much they want to know. Not every patient will want to know the ins and outs of the disease or how they are going to die, while others will want every detail.

I think I have a fair grasp of how to approach this with an adult. But with a child, I am very out of my depth. I still believe the principles of openness and honesty are critically important in paediatric palliative care, and I don’t think a child should ever be lied to. I think they also deserve to receive information regarding their condition, it must just be tailored to their understanding and development at that point. This is something I am hoping to learn through this course and through paediatric palliative patients that I encounter.

In summary, I think knowledge is important and information helps patients realise and accept what is happening, and thus preserves dignity in death. I still have much to learn in how to do this when it comes to a child.

[Tracy]

#88953

Thank you Kayla for sharing your and your patients experience with us> It astounds me to think about the miscommunication from HCP when saying there is ‘nothing more we can do’ and lack of understanding of what this meant to this patient! Well done on stepping in and having the conversations she needed – that offered her the respect and dignity she deserved! I think your discussion here will gel well with the next course on communication because this will give you the skills and tools to have these same conversations with openess and honesty with a child and their families.

[Robyn Tacon]

#89410

enjoyed reading your input Kayla :)

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