My choice to stop treatment is at the core of this blog and fundamental to my state of mind as I undertake this final journey and try to make the most of my days. So I feel compelled to periodically revisit this decision, particularly when I run into others who are either wrestling with the decision or have already made up their mind. Normally, these are very emotional discussions and, often, many of the individuals come across as conflicted and certainly stressed. It's an incredibly important area for all of us to understand, especially those whose life circumstances place them in the horrible position where they have to make such a decision.
When I first made my decision, I didn't feel it was that difficult for me. I think that was because I had been living with cancer for a long time, had researched the hell out of it and basically felt that I knew all I needed to know. And most importantly, I knew that it was my choice. I never once thought it was the doctor's choice and hadn't really thought about that possibility until I started reading articles about "never say die" doctors who will continue to present "choices" that are really not choices at all. Now, this doesn't apply to everyone. At many stages of a disease there are real choices of treatment to make with varying degrees of risk and potential benefit. But when you are at the stage where your disease is incurable, the only real choice you have is to continue treatment or to stop. Doctors will present treatments in very good faith that may have some benefit but that benefit may be very small. When presented as an option, many patients see the choice - to continue treatment or not - as a choice between continuing to fight or giving up. I don't, but I think many do.
I have spoken to a number of others in my situation lately and have found many who plan to continue trying anything that comes along with the hope - or maybe the belief - that it "might" help or even that it "will" help. There are even a few who refuse to admit that they are dying, perhaps because they find the thought terrifying. When I speak of my decision, I wonder if the others feel that I am giving up. We all say that it is up to the individual and bear witness to our right to make that choice, but is there an unspoken judgement there? Or do I feel some sense of guilt or indecision deep, deep, deep in my own troubled mind? Who knows? I don't pretend to, and I'm open-minded enough to consider that maybe I'm the one who has a problem with it.
Regardless, It is a very important decision and a real one. And clearly, it's not a decision you make and then move on. Whether it's through discussions in support groups, with your doctor, your own family or friends who have heard about something they think you should try, it can keep popping up from time to time and you have to deal with it. It's important for your caregiver, your palliative or hospice team and your doctors to know where you stand on this so they can interact with you accordingly. I've made up my mind to forgo further treatment and, while I may choose to revisit that decision from time to time, I am at peace with it and I don't need to be pushed into second-guessing myself. I'm thankful for their concern, but it's my choice and it's the right one for me. Please honour that as you would anyone else's choice to "keep on fighting".
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