Dr. Giovanni Marotta explains why some patients and families want ongoing treatment. Transcripts parts were taken by video interview provided to the Canadian Virtual Hospice, and was released by Creative Commons license.
We do see a rejection of the suggestion of palliative care. It happens for many reasons, I think. In my experience, the biggest reason is not really understanding what the natural course of the disease is going to be. Understanding, e.g. depending on the condition, the malignancy, if it’s dementia, the shutting down of kidney function, dialysis process as a possibility… but it doesn’t bring things back to normal! It is a little bit of plugging up a hole in a dike that will eventually fail. So it’s really asking “Do you understand what these conditions are?”, because the big problem is what the natural course of it is going to be.
I see that this really isn’t understood, in a lot of the cases. There’s, in a portion of cases, a sense from family members that “If there is a tool in the toolbox, we got to use it. I don’t care if it’s a screw, I got a hammer, I have a chainsaw, we’re gonna try and get that screw!”.
And that is tough. Because it’s hard, because it involves a lot of healthcare workers who do care. (As health professionals) we struggle when we know it’s not going to work with a tool that we have. That’s really important.
There are other issues inside people’s hearts, inside people’s brains. Family members that we may not be able to get to. There may be that another parent had died, and that they felt “I wasn’t really there…so now it’s my mom… there is no way… every stone is going to be turned over… I’m not gonna drop the ball on this one…”.
Thus, it is important for us, as care providers, to try and listen, to try and understand. Because, there are factors and issues that we often can address, in order to make the situation less difficult, to make it more accepting, and to understand what issues may be underneath.
As health care providers, we need to try and reach that, because there may be some decades-old emotional issues with family members that were not aware of.
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