Wednesday, February 16, 2011

End of Life Care

No matter how long life is or how long it seems, there will still never be enough time.

I can't count the number of times I've chastised a friend, telling them that, for most of us, life is so much longer than we give it credit for when we are 24 (their current age). Not only will you meet so many people you can't even imagine now but you'll be offered so many opportunities that you can't even imagine at this point, if you just leave yourself open to it. On the other hand, you can never imagine how long 50 years can seem until you're brushing your teeth next to someone you've grown to hate and loath over those fifty years (hell, even 50 minutes.) And 50 years can't go by quicker than when it's the right person, a person who improves with age in parallel to you. And despite all that is happening now, I know that life is long. So very long. Which means that we have to live with the hurt and suffering just that much longer.

All this medical stuff with my uncle never fully makes sense. I thought that when he came back home this last time, mid-January, I thought that my uncle was classified as "hospice," which was why we were getting all this care. No. See, he was classified as "home health care," on a schedule to show us all how to take care of him, check up on him, etc, but see there was this drug, called a targeted agent, which we talked the insurance into giving to him as a last ditch effort, but my uncle was on the fence about taking it at all, as no one could say that it would actually improve his quality or quantity of life. My uncle kept saying that he'd think about starting it once he felt a bit better but he never really felt better. But if you are on an active treatment regiment, you aren't on hospice. No one really explained this to us until probably Friday, less than a week ago. So we were all thinking about this, what we wanted to do, etc.

But the time for thinking ran out. Yesterday, my uncle started having some really intense pain. The immediate release drugs didn't touch it. My mother was 2.5 hours away, but just about to leave Suburb of Slightly Smaller Midwestern City. My uncle's boyfriend was scrambling to get all the info the hospital might need, to call the right people, to "Where the hell is that ambulance!" (So playing the slightly less dramatic version of my grandmother.) I was just holding my uncle's hand, trying to calm him down, get him to breathe, find out exactly where the pain was. Once at the ER, the doctors, including one we have a previous relationship with, we got the news that you don't really want to hear. My uncle was doing poorly. While my uncle's original living wills, DNRs, etc, said that he did not want extraordinary measures, people can and do change their mind when faced with a very caring but blunt doctor saying, "This is the end. I can do all these things, use the paddles, crack your chest (which will probably completely obliterate your ribs because of the cancer), put in a trach, all that stuff to keep you alive, but you won't be any better than you are right now and we won't be able to treat the cancer at all. OR we can treat your pain, either at home or at a home-y hospice center, though you will probably pass more quickly and be more aware of both the good and the bad of your situation." Though I have a whole other discussion about how much consent you can really get from someone in so much pain, their body wracked with disease, and on a huge amount of narcotics, I am glad that my uncle is making this decision for himself, though with his family, doctors, and social workers. He did not chose the first option. Right now, he is at the hospital, being stabilized, and deciding whether he wants to do hospice at home or at a hospice center.

But there really isn't enough time. One social worker, weeks ago, said that he knew people on hospice for a year or more, that they took trips. Hospice generally covers people who the doctors think might not last for more than 6 months, but that's just an average and people go one way or another. The way things had been going around my uncle's house, I thought we'd have time. We, my mom, my uncle, my uncle's boyfriend, and I, were just getting a rhythm down, moving stuff in so we were comfortable too. But it looks like we don't have that kind of time.

Doctors don't always come out and tell you things. They sneak things into other sentences. The Dr We Like said to my uncle "I wish I could keep you hear in the hospital and watch over you myself but there are more critical patients that could use this bed for the 7-10 days you'd be here."

10 Days. It's never enough.

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