Thursday, June 30, 2011
It’s time to check in with myself. Not that I don’t do so constantly with all the noise in my head. Writing slows me down to listen better.
I know I repeat myself: another week has passed, noted by the Wednesday nurse’s visit. Fortunately these visits are rather unremarkable since Dave is holding the status quo. Vital signs normal, with use of oxygen his O2 saturation percentage is rather good, maintaining liquid input, getting around the room at will, not much pain (or easily controlled)…
During the visit, I mentioned an article I read from the New York Times this week, Concerns about Costs Rise with Hospice’s Use on misuse and length of time patients use the care system. A discussion like this provides us an intellectual view on Dave’s hospice experience.
Dave appears likely to surpass his predicted six month mark coming up at the end of July. That’s a good thing. This care at home has to be far less expensive than when he was getting radiation, dehydration, chemotherapy pills, ongoing lab tests, doctor visits, etc. etc. Anyone who has had cancer or other chronic or life threatening illness knows that side effects cost time, money, and energy above and beyond the diagnosis and treatment of the primary disease. The most important question I ask is, “how do you quantify the cost for emotional well-being, TLC and peace of mind not only for the patient but also for the family?” I especially liked one commentor’s response to the article: “$12 billion for hospice care? Sounds like a lot. But it’s a bargain when you consider that supplying air-conditioning to troops in Iraq and Afghanistan runs $20 billion annually.”
Doesn’t that put it into perspective when 1.1 million people utilize this care for a median of only 17 days? How much abuse of the system can there be? Any program can be misused, so let’s not throw out the baby with the bathwater.
But personally, my perspective is one of wondering the cost not of hospice, but of cancer treatment; and not necessarily in terms of dollars. IF Dave hadn’t taken the Tarceva that knocked him on his butt, would we be here on hospice? Could he have finished out the school year teaching? Was that one drug the life-threatening culprit? Or conversely, are we still here enjoying time BECAUSE he took the Tarceva and it knocked out enough cancer cells to keep the cancer dampened down? I can’t think of hospice in terms of politics or money. This is about care and treatment decisions (Choosing to not aggressively attack illness also includes treatment, just not potentially – regardless of how remote – curative).
It doesn’t matter; we are here now. The prediction statistically for Dave’s type of cancer is that only 10% of patients live for one year. That would be October for our case. Hospice care is the right decision, right now. Dave is a person with a family, not a statistic. Palliative care and hospice has proven to increase the quality and quantity of life. I believe wholeheartedly that the care and love and choices are extending his time and thus our ability to proactively confront our loss. Maybe the politicians and bean counters would prefer he continue fruitless treatment that kills him more quickly while trying to stay alive, thus medicare and social security payments wouldn’t extend so long. It is superficially penny-wise and pound foolish. No, not even penny wise; it is simply foolish thinking.
Dave’s oxygen level is 98% sitting up, his lungs sounded more clear in some areas than they did at our nurse’s last visit. Can he be getting better? Should he graduate off hospice? What would that mean? Our nurse mentioned that we could still have Dave go into our healthcare center for bloodwork just to see if there are clinical changes to measure. We can still look for signs of decline or improvement. Why? We did do one of those things you want to know the answer, but don’t want to know. We checked his weight for the first time in a couple of months. He has lost another 14 pounds. A sign of decline. Did we really need proof?
There is no graduation expected in this household. We won’t change the eventual outcome. After 49+ years of paying into the national safety net system, perhaps he’s already paid the price for an extra month of living.