brighid

Seanie,

Uh … that is a terrible story and very unfortunate. I can understand that as a minor child they might choose not to tell him, but once he became an adult he certainly had the right to know about his illness. I am not sure how his doctors were able to keep that from him, unless medical records were never transferred to another doctor. Honesty was certainly in order.

I try to put myself in the position of those people. My son is only 9 but he is very bright and perceptive. I would tell him (despite it wrenching my heart out and quite possibly having to have some help from doctors and husband because I would likely be a blithering idiot) and discuss how HE would want the remaining time to be.

I try and live my life with the notion that I do not know when I will meet the end of my life: either through illness, old age or accident. If I knew I had a terminal and incurable illness I would probably want medication to manage the pain, but as long as I could remain reasonably coherent. Then I would simply want to go somewhere beautiful to spend that time with my friends and family, quietly, peacefully, soaking up every minute of my time with them. I wouldn’t want to die in some sterile hospital bed hooked up to machines. We all die, but most of us don’t have the opportunity to have the choice to say our goodbyes and make the end memorable, respectful and dignified. If you have the opportunity to do that, or provide that opportunity to a loved one … well, I personally feel that is a pretty good choice. But that choice may not be for everyone.

Brighid

Arrowman

I have to agree that a doctor in that position is obliged to comply with the father's wishes. At the same time, I would

1. Continue to gently discuss the matter with the parents, hoping to persuade them over time (and also hopefully with the passing of time and the progression of their grieving process).

2. If I felt that the child's lack of knowledge of the true nature of her condition would impair her treatment in any way, I would make that point very strongly and ultimately, if necessary, remove myself from the case.

As to this second point, although I am not a medical professional I can imagine any number of possibilities, major and minor, including
- limitations on the capacity of palliative care staff to deal with child, when they are required to conceal her condition from her;
- inability to access various "make a wish" programs for terminally ill children;
- even the possibility of a spontaneous remission; that is, if a person knows what is happening then their body and mind can fight it - if they don't, they have no chance.

And, of course, the fact that an 11 year old would not be able to work out very quickly what is going on. She will of course; her father needs to be reminded of that.

I have some sympathy with the father, if we are talking very early days after the initial diagnosis. I don't know how long it would take me to prepare myself to discuss something like that with my own child. In fact I don't even want to think about it so I'll stop now.