CBC News posted a brief but interesting article titled Aggressive end-of-life care more common among faithful: study. I found the results intriguing because I’d noticed the trend myself while working with hospice. Unfortunately, the study didn’t really address the reasons why people of faith are more likely to utilize aggressive treatment.
(Which of course unleashed some rabid exchanges in the comment section. Religion and politics…sigh. Everyone has an opinion.)
Contrary to the usual religious/anti-religious stereotypes, what I saw taking place in my work was always far more complex. There were as many different, unique reasons for seeking (or not seeking) aggressive treatment as there were people making the choices.
Having said that, there was one thing I observed consistently:
Those who saw themselves as a part of something bigger…whether spiritually or community based…seemed to be able to cope more successfully with the hardships of dying. The larger this framework was, the more value these people seemed to still find in what was left of their lives. (They were frequently, but not always, people of religious faith. Some of the non-religious people I worked with had a spiritual, philosophical, or artistic dimension to their lives that provided them with the same kind of anchor that religion offered to others.)
On the other hand, those who identified most heavily with their individual choices and rights–their ability to control their situation, think clearly, and remain ambulatory and independent–seemed far more vulnerable to the ravages of anger and despair. Their ability to cope with the changes and losses was reduced, as was their ability to still find value in the time they had left.
I learned a lot from this, about how important it is for me to stay connected to a more expansive perspective in my own life. To make sure I walk up in the mountains, under the stars, and out in the storms as much as possible. To immerse in great music and art and literature, to constantly nourish my imagination and sense of wonder. To resurrect my trust (over and over again) by reaching out to touch others in pain. And to fight against the overpowering impulse to hide by sitting up anyway, and bravely asking my questions of the night. Because those are the kinds of things that remind me that I really do belong here and I’m not alone.
We each have to find our own bigger picture, and part of that involves choosing what meaning we’ll weave out of the darker threads of our lives. A lot of people turn to the traditional religions of the world for help because these institutions are old hands at confronting the overwhelming suffering of humanity. Over the ages they’ve developed an extraordinary array of tools for extracting the beauty and value embedded in the horrors.
But there are a lot of other people for whom established religions no longer work. And for them, the task of weaving an effective, helpful meaning for suffering can be a real challenge. I have a growing suspicion that that’s actually one of our next, great tasks as human beings–to extend the weave of the old meanings in order to incorporate all the new, great stuff we’ve developed and learned along the way.
As regards the study, I suspect that just like everyone else in the world, some of the faithful involved sought aggressive treatment at the end because they were afraid to die, while others utilized it because they still longed for and valued their lives. (In fact, they were all probably a blend of both.) And if there were more faithful than non-faithful who still found enough value in their lives to keep fighting to live it, I suspect it’s because of the larger framework their religion offered them.
Here’s a poetic example of one person’s effort to expand that meaning beyond the realm of traditional religious understanding that I found curious and beautiful. (And if you haven’t seen it, this blog is pretty amazing anyway. It’s called I Wrote This For You, and from what I’ve been able to figure out it’s the partnership of a photographer in Japan and a poet somewhere in Scandinavia. The short poetry reminds me of Rumi and Rabindranath Tagore, and can be heart wrenching, inspiring, and thought provoking all at the same time. The photography is breathtaking.)
copyright Dia Osborn 2011
The Odd and Unmentionable 
Dia, I had trouble finding my usual “setpoint” with this post. I’m not religious, but do I see myself as part of something larger? Ach…when it is my turn, as it will inevitably be…which way will my pendulum swing?
On the one hand, I’m terribly aware of the futility of fighting the inevitable, which for all of us is death. On the other hand, I know that I’m impossibly stubborn and I don’t succumb easily to adversity. I find pleasure in probing the unknown and in pitting myself against that which I don’t think I’m up to.
But then there’s this other thing that creeps in around the edge of the page…I, like every human being, crave dignity. What dignity is there in fussing and fighting with our inevitable demise?
This may be one of the rare issues in which religion may not play as large a role as we think it should. I think our personal reactions to impending death are shaped by myriad influences, an idea which is enriched by your quote: “to extend the weave of the old meanings in order to incorporate all the new, great stuff we’ve developed and learned along the way.”
You make me think far too much, my friend.
I figured a discussion of religion would stir shit up for you. 🙂 Y’know, whatever problems they sometimes cause in other arenas, religions play a profoundly nourishing role during dying. In my experience, they almost always made a big difference in how well a person coped with the whole process. There were many I saw who had rejected their early faith at some point and lived their life without it, but then returned to it (to varying degrees) for help at the end, and it brought them great relief. I was always grateful for it. I’m not absolutely sure about this but I think that’s one of the original reasons religions evolved in the first place, to help us deal with the transcendental realities of dying and death. In any case they evolved to help us deal with the realities of suffering in a way that we could continue to value life, and they’re really, really good at it. They’ve had a lot of practice and they know what they’re doing.
The big push towards science and rational thought has brought us extraordinary gifts, as well as a whole lot more freedom to think our own thoughts and ask uncomfortable questions; something for which I, personally, am deeply grateful. I would never have survived in the original-thought vacuum that some religious institutions promote. However, there’s a sweeping spectrum of human experience that science and rational thought just aren’t designed to address, and a big chunk of that human experience comes into play during dying. People who don’t have any tools to help them make sense out of the existential realities involved tend to struggle more with despair and a desire to take short cuts. And really, I ask you…why wouldn’t they? Going through the dying process with no awareness or understanding of the transcendental realities involved would be like falling into a river and getting swept through miles of class 5 rapids without a kayak. As you say, where’s the dignity in that? However, just skipping that stretch of river and ending the trip early with assisted suicide isn’t the ideal solution either. Rapids are some of the most stunning, beautiful, exhilarating parts of the river, and navigating a class 5 successfully changes a person. Navigating the entire dying process does the same thing, only times a million. And as an added bonus, it changes everyone else, too.
Religion is by no means the sole guardian of transcendental knowledge regarding dying. Literature, mythology, and folk stories are full of teachings, as is the natural world. I had the greatest aha! moment of my life sleeping out under the sky and watching daylight fade into starlight. For me, that evening explained everything I was struggling to understand in a language I could finally grasp. I’m not suggesting that anyone go out and find religion just so they’ll have something to hang onto when the dying time comes. Nobody can stop being who they are or stop believing what they believe, just because they’re scared or uncertain about what will happen to them at the end. What I AM suggesting is that there’s a third option between religion and assisted suicide, one which involves crafting new, unique ways to savor the luminous, exquisite, rare miracle of life, even during the beating one takes through the dying process. It’s an option that’s probably harder than the other two, but so what? Isn’t that what a great adventure is all about? 🙂
The decision to end treatment and how that decision is implemented in the health care beauracracy results in a most surreal experience.
I’d love to write about what happened with you and Mr. B when you were trying to leave the system. Would that be all right? I think your experience was fairly common and is a good reminder that we all need to be assertive if we have any intention of dying a good death…especially at home.
One reason I mentioned this is that I think it needs to be written about but I’m not good at that. Give me a call if you want to talk about it. Or if you just want to talk about something else.