Hal is down to about 80 pounds, blind, bedridden, unable to feed himself, incontinent for the past six years and in a VA hospice. There he receives good care and dozens of daily meds that keep him alive. At the request of a friend of his, I visited him recently to talk about his options. They are, essentially, keep doing what he’s doing – or let what’s being done to him keep on being done – for as long as his remaining cells agree, or stop eating, drinking and accepting all medications but pain control and shorten that period ahead. As it turns out, Hal, a long-time supporter of aid-in-dying, chooses the former; that is surely his right.
As I was leaving, though, the man in the other bed asked me to talk with him. “I heard everything you said,” he told me. “I’m dying. It’s taking too long. Can you help me?”
Well, no, I can’t help him much at all. And that makes me sad for us both, as he is clearly in need of help: pain control, advocacy, methadone, comfort care and social contact. The latter two he is getting to the extent possible; round-the-clock methadone, which is what I think he really wants, is not exactly mandated by the VA. But somebody should be listening to him a little more carefully.
Joe, I’ll call him, since he didn’t ask me to share his story, is 66 but could pass for older. He has cancer in his liver and elsewhere, he says. “It’s pretty much all over, but I think it started in the liver. I’m in a lot of pain. I get a shot of methadone every night at six and that helps for about three hours; after that I just try to hold out until the next shot. I don’t want any more of this.”
Joe reached over, opened a drawer to the little table beside his bed and pulled out several folders. He has an appointment for dental work in three weeks, and is scheduled to begin chemotherapy. “How can they make me do all this?” he said. “I don’t want any dental work, and I don’t want chemo. I just want out of the pain.”
At some point, many of us just want out of the pain, and welcome death as the inevitable way out. Others of us, luckier or sometimes wiser, welcome death because its time has come and that’s what we mortals do, we die. Might not always be the worst thing that happens.
The hospice where Hal and Joe are is part of a huge VA medical center at which excellent care is provided. Since I know nothing of Joe’s history, and since everything I know about the medical center is positive, I can only assume they are doing the best they can for him. Perhaps they see him getting better, going home – although he told me he has no home, no family, no close friends – or to somewhere outside the center’s campus. At a sprawling center staffed with skilled, caring people whose aim is to heal and to cure, there may be few people available to talk to Joe about dying, or to help him gently do so.
A lot of progress has been made toward end-of-life care, but the ability to face death with honesty and compassion eludes us. And until we find a way to do so people like Joe will be around to break the hearts of those who meet them.