Saturday, September 19, 2009

Seeking Qualified Death Panelists

And here we are at today. I had plans: Visit hospice, do interview for Tube Times, go to Zen Center for class, eat two artichokes, and watch Atonement on DVD.

It’s funny how the day you picture beforehand so vividly, thinking you know just how it will go, can have very little in common with the real day as its moments unfold.

For starters, when I arrived at the hospice, I found my guy permanently unavailable, in that he died last night. The nurse who told me that didn’t know if his wife had been with him or not. I hope she was.

I considered going to see P. during the unexpected bit of free time, but decided to come home and hack through some of my email. When I left the house again—take two—it was sunny, whereas it had been gloomy the first time around. Fortunately, it was not particularly humid. It was lovely, in fact.

I had arranged to interview and take photos of three generations of cyclists in one family for an upcoming issue of the Tube Times, the publication of the San Francisco Bicycle Coalition. By the time it was actually upon me, it seemed more like a chore than something to be anticipated—what if it wasn’t fun, what if I didn’t like them (or they me), what if there were technical difficulties?

The bike ride to the appointed meeting place in a park on the north side of town turned out to be really nice, and when I arrived there, the oldest generation, a retired lawyer of 85 with beautiful teeth and a tranquil, almost mesmerizing voice, was already on hand. I immediately liked him very much.

We got a chance to chat while waiting for his son and grandson, and then I took a bunch of pictures and we did our interview, and it ended up being great to meet them all. The only technical difficulty was that the grandson, who is seven, could not figure out what on earth my little cassette tape recorder was. We did our best to explain it to him.

On my way back, I heard what at first sounded like someone playing a couple of really gorgeous chords over and over on a guitar, but then I realized it was an accordion, and very close at hand, but where? I crossed the street and found a fellow sitting in the side door of an old van playing away. Leaning against the van were paintings done on old windows still in their frames.

Next I found myself on the bike boulevard on Octavia St. At Fell St., there was a big sign saying everyone had to turn right. Fell is not highly hospitable for cycling, but then I noticed that the bottom of the sign said “EXCEPT BIKES.” I continued on, and so did a motorcyclist who was promptly pulled over and ticketed, which was kind of refreshing, not to take pleasure in someone else’s ticket.

At the Zen Center I ate my walnut butter sandwich on the front steps (peanut butter has an unfavorable Omega 6:3 ratio) and then went in to help set up for our class. By chance, we did a writing exercise about death (what we want to be able to say when we die, and what we don’t want to have to say) and to put us in the right frame of mind, Paul Haller read a Mary Oliver poem. I had drafted my blog post about reading a Mary Oliver poem to a dying person prior to today, so that was extremely cosmic, all this death and Mary Oliver everywhere.

Upon returning home, I did eat the two artichokes, and with great pleasure, but I didn’t watch Atonement because I did this instead. Some people half a block away are into the sixth hour of the world’s loudest party—they do this extremely often, although this time they went the extra step of blocking the entire sidewalk in front of their building with one of those rented kiddie bounce houses; they also grill with approximately two gallons of lighter fluid about four times a week, creating a ghastly stench for me and I'm sure tens of others—and Tom called me up and announced that he hates these people, which is a very un-Tom-like sentiment.

He has to get up early tomorrow for a hundred-mile bike ride and was thinking of going to a café for some peace and quiet; I suggested bed and earplugs.

The latest Newsweek discusses the vast amount of money spent on end-of-life care, which partly makes sense because people are sickest right before they die, but also is because many of us are so afraid to die that we don't talk about it or think about how we actually want it to be. Doctors, I think, also feel they have failed when patients die, and may want to do every last kind of treatment they can think of, even when it's clearly futile; there can also be a financial incentive to do this.

What we need, obviously, are DEATH PANELS. We need greater awareness of options such as hospice, which can be a good thing all around: The person who is dying can spend final weeks resting peacefully, enjoying life as much as possible, and using his or her remaining energies as desired, instead of being subjected to all manner of procedures (maybe invasive, maybe painful, almost certainly at least uncomfortable), and a tremendous amount of money can be saved. Many hospice patients wish to die in their own homes and do so, though you can also receive hospice care in a hospital or other facility.

The idea is to manage pain and allow the person to have as much dignity as possible, without attempting to treat the terminal condition itself. I'm just starting out, but I have already met so many great people involved in hospice care that I think it is a very good thing indeed, and certainly something I will choose one day, if I'm in the position to do so.

It's also important for people who have figured out what they want to make sure their wishes are specified in appropriate legal documents, to avoid the situation where doctors go ahead with futile or undesired measures and/or family members who can't bear the thought of losing their relative insist on interventions that don't really make sense.

Tom and I discussed all of this, and also the situation in which a person with dementia can no longer live at home, and I gave him what I think was fair warning that the very first time he gets out of hand, I'm going to institutionalize him. I added that I think his brother who's closest in age to him will back me up.

Tom joked, "I'm sure he will. In fact, he'd probably go along with institutionalizing me this very evening." The unbreakable bond between siblings is a touching thing, or, to say it another way, be careful about who ends up on your death panel.

1 comment:

J said...

I agree that dignity in the last days, weeks, and months is greatly to be desired. I guess the difficult issue for so many is when to admit to themselves and their families that this is it, they're not going to get any better, it's time to let go. Sigh.

That's twice today I've been told about that Newsweek article. Guess maybe I'll buy it.