Nightmares old and new

I try to keep most things on this site suitable for children, at least older children. This probably isn’t. Fair warning.

It is also longer than usual. More fair warning.

And it’s personal. I prefer to report, provide useful or entertaining links, and maybe make a comment or two. But this is personal. Add it to the cries of anguish around the globe, all screaming for mercy and finding too little of it.

I don’t intend to do this often, but I want to be able to face myself in the mirror, and I don’t think I can do that if I keep quiet just now.

My memory is a bit fuzzy on this, as old nightmares sometimes get. Sometimes you remember that you were shocked, and that’s as far as you can get clearly. I hope you will bear with me.

Many years ago now, before I was grown up, I stopped reading National Geographic magazine for a while, along with anything remotely like it. I was (I hate to admit this) afraid to look inside, afraid more precisely that I would see another photo like the one that had scared me and made me sick. The photo, as I remember it, showed a woman in a cage or box of some sort. I want to say big bamboo or reeds, but don’t quote me on that. She was looking out. You could see her face. And she was suffering. Pleading. I had never seen the look before, but there was a terrifying aspect to it. And it made me uneasy.

Then I read the caption. The caption said that she had been found guilty of some offense against the tribe, I think. I don’t remember the offense. All I remember is that the caption said that the sentence was that she was being starved to death. That’s what she was in the cage for, to die slowly from lack of food and water, as an example to anyone else considering the commission of whatever crime it was.

The caption did me in.

I didn’t want to know that people did this to other people. I didn’t want to believe that they could.

I tried to tell myself that this was some remote tribe and in that respect not something I needed fear directly. They might be savages, literally, but they were over mountains and far away, across some ocean.

But here that photo was, invading the sanctuary of my parents’ home and staring me in the face. I can’t remember whether it was an old issue or a new one (my parents saved them all, and we’d inherited some, and I loved to go through the old ones). But it was right there in my hands, telling me that somewhere, in my world, at this late date in history, people were being starved to death on purpose. I had nightmares for a while. Sometimes I got sick when I tried to eat. I had been an innocent at play in a treasure trove of far horizons, sitting safely in my family’s home, and I had been sideswiped by something I could not have understood was possible. Not in my world.

It was the inhumanity of the situation that cowed me. We were supposed to have outgrown such things. They were not supposed to happen anymore. Not in my world.

I am older now, and more versed in man’s capacity for inhumanity, but at least until recently I could say that at least we had outgrown such things in my country.

My country was a good country, after all, full of good people, enlightened people. Take the people who started the modern hospice movement, for an example.

When the hospice movement came along, it seemed a good thing. As it was explained to me, doctors and hospitals had become so gun shy of being sued for not doing “everything possible” that we had become a country where it was more common to die in a hospital bed, hooked to machines, surrounded by antiseptic smells, and subjected to strangers fiddling with your body from time to time and then leaving you alone, than to die in your own home. Most people, I was told, were dying alone in unfamiliar surroundings – worse yet, as bodies being administered to instead of humans reassured of their worth. As it was explained to me, family after family had tried to take their loved one home after hope of recovery was gone, but had been thwarted by doctors and hospital administrators who would not relinquish control.

It was the inhumanity of it that shook me. We should not have let ourselves be backed into a corner like that. Not in my world. Not in my country at least.

Well, of course something must be done. How much better to let someone go home and die in their own bed, surrounded at the last by family and friends, someone holding their hand, surrounded by love, the air full of reminisces. (And, coincidentally, not running up astronomical medical bills for no good purpose.) I wasn’t silly enough to think that every case would follow this idealistic playbook; but being home, all in all, beat being in a hospital, surely. Not fighting the inevitable also seemed better than endless pumping in of chemicals and administrations of electric shocks or whatever might be seen as possibly prolonging a life that had reached its natural end.

I could see how doctors might be afraid of being seen as not doing enough. And, of course, they had a right to protect themselves if they felt threatened. And so, as it was explained to me, we just all needed to push for hospices and living wills, and the doctors would have the legal cover they needed so that they could do what was right. And then everything would be fine.

Count me in, I said. And then I went about my own life, reassured that dying people had hospice workers to fight for everyone’s right to die in their own bed when possible, or at the very least in surroundings where someone was on hand to hold a weary hand and speak soothing words at the last.

It did not occur to me that hospice care would – could – veer so far away from its original path.

How did we get here?

How is it that some hospices – designed to return much-needed humanity to what was becoming a stark and overbearing medical profession – have become a variety of cage where a woman can be locked away to be starved to death?

Or for that matter, where people are locked away and fed, but kept carefully, scrupulously, out of sight? Were they ever meant to be the new age version of the legendary attic where the crazy aunts were supposedly sent in the old days to prevent embarrassment to their more socially adept and ambitious relatives?

Aren’t they supposed to be harbors? Someplace safe?

How is it that through the ages it has been a sign of compassion to give water to a dying person, but now so many hospices see the withholding of water as a medical procedure, a means to an end? The very picture of hospice in the beginning, as I saw it, was a compassionate person cradling a suffering one, offering a drink of water. How many battlefield stories have featured this icon of caring? How far have soldiers gone out of their way to provide a drink of water for a dying buddy, even knowing that the end was both inevitable and soon? Scurrying up a last sip for someone has been, for centuries, the one thing desperately grieving friends have felt they could do, when there was nothing else to do. For that matter, how many times has Western civilization cheered a soldier (or civilian) who found water for a dying enemy?

It was a nice picture. Or at least nicer than what is being served up today.

Wasn’t it?

Through the centuries, in stories both written and told, when a dying man asked for water and someone else ignored the request, wasn’t that our cue that wickedness had entered the picture?

Wasn’t it?

It didn’t mean that the bad guy’s heart couldn’t soften later in the story, of course – but for the moment didn’t we know where we stood? Here was cruelty, to be booed and despised, just like we despise despots in real life who reduce their prisoners to living skeletons.

I understand that sometimes it is time to quit medical treatments. But I don’t understand how we got from knowing that to excusing the next step. How did we get to where some doctors no longer simply decide to stop trying to heal but take action to insure death on their timetable instead of Nature’s?

I feel as if we have gone backwards in my lifetime.

The movement that promised to help people die at home, or at least in a homelike setting, with as little interference as possible, seems somehow to have become a movement to administer death away from home. There are elaborate protocols now, it seems, to deal with the symptoms caused by deliberate dehydration. Here we are, interfering again, making it more common to die in an institutional bed, surrounded by hospital smells and subjected to keepers fiddling with your body from time to time and then leaving you alone; instead of quietly, decently, sending people home to their own beds. How many families are trying to take a loved one home (or transfer them to a different institution infused with a different attitude) but are being thwarted by doctors and hospice administrators and judges who will not relinquish control?

How did we get so backward?

And how do we turn around again?