Ai, yi, yi, my head hurts!
    Figuratively, that is. It seems that my mother is in danger of losing the gentlest, most appropriate medical care she's ever had (through Hospice) because she's not dying fast enough. Shaking head. Closing eyes. Despite the incremental declines I see in her, Hospice sees her as "stable". She clearly isn't. But, she's just not declining at a Final Gifts rate, I guess.
    So, this last night I started researching all kinds of information about hospice. I found some good sites.

• This one (it's a pdf) gives an excellent technical overview of how terminality is figured in time. According to the Karnofsky Performance Scale, there was good reason to sign my mother onto Hospice as, her cancer, profile, alone, indicates that 60% of patients in her category are dead in 6 months.
• This site (which is clearly dated) and this site (an excellent site for a quick, dirty introduction to Hospice funding) both talk about funding and gave me an idea that perhaps the Hospice my mother is with is having a funding problem...perhaps they are over taxed with patients and, despite the fact that, at this time, my mother's Hospice funding profile is surely covering her with plenty to spare, if her Hospice is experiencing a "Cap" problem, this could have no insignificant effect on their desire to get rid of her at this time, since she has a 40% change of living beyond 6 months.

    The Hospice RN, when he ran this possibility of my mother being pushed off Hospice because she is too medically "stable" for Medicare to continue to fund her, assured me that we wouldn't be left high and dry. Hospice would find us an appropriate local doctor (I have no idea how they're going to do this, considering my lack of success, but I assume their network ensures success where my lack of a medical network here ensured failure) and, of course, "she can always come back on Hospice". The problem with switching her back to any non-Hospice doctor is that if she has an acute episode, I believe anyone can safely lay money that she will be sent to the hospital, where experience tells me she will be dangerously mishandled. Maybe, as I have before, I can successfully fight the mishandling...but, the further along she travels with her tumor, the less likely I'll have the time to successfully fight on her behalf. Aside from the fact that all hospitals and all doctors, across the board, since I've been her medical advocate (and before, for that matter) have had periods of dangerously mishandling her, this hospital in particular seems to corner the market on misdiagnoses and mishandling. This scares the shit out of me, now. I almost feel as though, if we are kicked off Hospice, even if we're assigned a doctor and, additionally, that doctor and I are able to come to an understanding that is beneficial to my mother, if she has an acute episode I should just try to deal with it at home, hope for the best, and that scares the shit out of me, too.
    There's more, much more, that I want to write about, here, but I need to finish dinner and get The Mom up from her nap. Suffice it to say that, over this weekend, I'll be compiling a well researched and well documented plea questioning my mother as a "stable" Hospice client and pleading for compassionate care, as well as a compassionate decision, on this matter, while it's still stewing in the Hospice office soup.
    I gotta tell ya, people, it is a wonder to me that the USA isn't lower on the international health quality scale than it is. Maybe, in truth, it is; maybe the numbers that make it to these places that produce these measures are fudged. Shaking head. Closing eyes.
    I am reminded of something I read when I was in college in a book by A. Alvarez called The Savage God (I think that's right, I'll have to look it up). It seems that Greco-Roman attitudes toward suicide were involved with the idea that there is a right time to die and it is the height of good manners to take oneself out when that time has come. I can't help but consider this bit of information while contemplating and trying to work through the irony of our current medical dilemma with Hospice.
    Later.
- posted by Gail Rae @ 20:40   email  this post