Date: Tue, 31 Oct 2000 22:58:21 -0800
From: Lonna Cunningham <lonna@POWERSURFR.COM>
Subject: Re: To tell or not to tell
This is what I want the doctors to tell every patient (and if the family knows and the patient doesn’t, then it’s the family’s job to communicate this to the person involved):
What is the best possible case?
What is the worst possible case?
What is the most likely course and progression of this illness?
That gives them the parameters to work with. Give them the truth as you understand it, and then let them find hope where they choose. How can you think you’re really hiding anything from them, either? Give the person the information they need - their body knows the truth already. When I was pregnant with my first baby, a little girl, we found out that her brain hadn’t formed properly and she wouldn’t live very long after birth (hours at most). When the doctor told me, it was like my whole body said "YES I KNOW THIS IS TRUE." I had known all along. I remembered dreams I had had, thoughts I’d encountered ... somehow, I had known without knowing. That was about my baby, who was within me but not me. How could anyone not know their own condition, in a similar way?
I believe that as long as the patient is coherent and even vaguely in touch with reality they deserve to be told the truth of their situation, as it is understood by those caring for them. I believe this to be true no matter what the age or physical condition of the patient. The journey we take towards death is our own path, and we have the right to choose that path ourselves, not have it chosen for us. It is also not a journey anyone else can really see from the outside.
When caregivers (physicians, or families) decide what constitutes "hope" for a given patient, they are taking away that person’s right to choose their own path on their journey. Hope means different things for different people. How can you decide for them what they want to do? There are many things we do not understand. We need to grant each other the opportunity to face the mysteries of our lives prepared and forewarned. If the patient chooses to cope by denying the illness, well, not much you can do, that’s a valid coping strategy for some people. If they don’t wanna believe it, they won’t, denial is a powerful thing. You cannot, in good faith, choose denial for someone else.
Okay, I’ll climb down off my soap box now. :) Sorry for the passionate speech - I’ve just had a little too much of the sugar coating people have a tendency to refer to as "giving the patient hope", and I’m feeling queasy from it. I liked David Bailey’s phrasing: here’s the stats, but they’re just averages - there are people above & people below, you might as well aim to be in the "above" side of the curve. That is fair.
Covering up the facts as you understand them is not fair.
Lonna
in Alberta
(flame privately if ya need to, I realize you might disagree & that’s okay!)
[Lonna's former husband Allister died on 7 March 2002 from his brain tumour after a journey which commenced in October 1999.]