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Karl writes:
Ronnie, I agree with all the points you've made. You are of course quite right and on the mark about not forcing the patient into decisions. The loss of control of having NHL is bad enough without adding to it by "bullying." Plus, we must understand our limitations and that we don't necessarily know what is best. Still our questions are important. Very important. The person
in denial is not asking any. The doctor with the big practice and heavy case load is not necessarily thinking about what's best to do with the patient who's not asking questions. New information and new situations can come up between 2 or 3 month visits ...
So I'd like to expand on the times when it may be necessary -- not to say "DO this," but to say: "These are your options, please think about it and make it *your* decision, instead of a *chance* decision." I think this is what Hoda accomplished so nicely.
The consensus is that the first treatment is an especially important crossroad that will not return. Some first-treatment-choices can impact on survival by precluding future options, sometimes by unnecessarily failing to maximize the chance for the best outcome. My initial thought was that the patient described as being in denial (I don't know her name) appears close to receiving her first treatment:
She has had it for a while and it is slow growing, so far in her chest and abdomen and [it] has spread to her lower lumbar region of her spine.
Knowing that there is no standard treatment for NHL, she could receive many types of treatment very shortly. If she's in an HMO, what do you suppose she's likely to get? Will they give her CHOP, and skip the Rituxan to reduce costs? I fear they might. Or will she receive CVP when she could at least have a shot at a vaccine after CVP if she's in a trial? Most doctors
don't inform their patients about trials.
Another concern I have about being silent is when slow but steady disease progression is leading to excessively bulky disease, even when there are no symptoms and QOL (Quality of Life) is fine. In this situation I think you have to communicate to your loved one about the information coming in: that patients with bulky disease are not getting the duration of response that those will less tumor bulk are getting -- or at least call the doctor and ask him or her to talk about these issues with the patient during the next visit.
So I would encourage caregivers to try to keep up to date with the information, and to find effective ways of getting the information that's needed to your loved ones (directly or indirectly) so that *they* can make informed decisions. This also means trying to communicate effectively at home and with the doctors. A full time job if ever there was one.
Again, thanks to all who have shared their opinions.
-Karl (co-moderator NHL-info/follic)
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