Telling The Truth Isn’t Just Hard, Sometimes It’s Deadly

La Vérité (“Truth”) by Jules Joseph Lefebvre

This is a must-see for all of us writing to inform or educate.  The Committee to Protect Journalists (CPJ) has just released the 2011 Impunity Index (Getting Away With Murder) and it’s both a disturbing and enlightening read.  Evidently they publish this every year (this is the first year I’ve seen it) and it highlights the countries in the world that are most dangerous for journalists based on how many of their murders remain unsolved.    There’s a world map at the top which you can scroll over to see where the cited nations rank.

We all know that speaking up when others want you to keep your mouth shut is frightening and hard.  You can easily become the target for a whole lot of anger (trust me on this one if you don’t already know yourself) but imagine living in a part of the world where you could actually be gunned down in a parking lot in front of your child for telling the truth, and where the person who murdered you wouldn’t even be prosecuted much less punished.  I was really surprised to learn that Brazil (#12) and India (#13), two of the BRIC countries and rising economic powerhouses wielding a growing amount of political clout, were on the list.  I was pleasantly surprised to see that Russia (#9) is improving, and not surprised to see that  Mexico’s (#8) situation is deteriorating.

Actually, everyone should care a lot about this, not just writers and journalists.  Why?

CPJ research shows that deadly, unpunished violence against journalists often leads to vast self-censorship in the rest of the press corps. From Somalia to Mexico, CPJ has found that journalists avoid sensitive topics, leave the profession, or flee their homeland to escape violent retribution.

Censorship and corruption go hand in hand.  You never have one without the other.  Ever.  He who controls the flow of information, controls everything.  Which is precisely why journalists who report on their activities are now the number one target of drug cartels in Mexico.  And the result is predictable.  The remaining journalists have drastically curtailed their coverage…self-censoring in order to survive…and the cartels have been subsequently strengthened by the expanding cloak of silence.  As things gets worse down there, we’re hearing less and less of the details and it’s already starting to spill over the borders into this country.

Freedom of speech is not just about being able to express ourselves on blogs and Twitter and Facebook, although those things are important, too.  At it’s core it’s about protecting our communities and nations, our fundamental freedoms and human rights, from those who would corrupt them.  Media bashing has been something of a blood sport for the last few years, but that’s probably an attitude we should rethink.  Corruption is popping up everywhere in the world right now, including right here at home, and we need all our journalists and the agencies that support them if we intend to keep our freedoms.

Things to do?  Thank a journalist.  Support CPJ.  But probably the most important thing of all?  Practice speaking up ourselves when it’s hard….challenge a bully or respectfully offer a different point of view in a heated conversation…and then try to listen when others do the same.  The most important truth in the world is utterly useless if we all close our ears and refuse to listen.

copyright Dia Osborn 2011

 

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Shhhhhh…..

image: Shhh by Str8UpSkills

Once again I’m reminded that most people don’t enjoy talking about dying the way I do.  Last night we had a guest.

A long-time friend of the hubster’s arrived yesterday evening after a lapse of at least fifteen years, and the three of us sat down to do some catch-up over platters of nachos, ginger snaps, and tea.  The conversation ranged back and forth between us, as good conversations are supposed to, until it tripped over the subject of my hospice work at which point my enthusiasm for the topic hijacked the next half hour or so.

Looking back now I can recall a few moments that should have cued me to our guest’s growing discomfort.   Initially he squirmed, but that wasn’t definitive.  It was always possible that our cozy, leather couch was making him uncomfortable.  Then he took a stab at changing the subject…twice…but I can be like a rat terrier when locked onto something that interests me.  The hubster finally stepped in to back him up on a third attempt but I deftly steered that topic back around to dying, too.  

Finally, I started hearing terms like “morbid” and “depressing” thrown into the mix at which point I realized I really, really needed to shut up, but it was too late.  I was having a Toyota moment.  My tongue was like a gas pedal pushed to the floor, resisting any and all attempts to disengage it, and I couldn’t for the life of me close my mouth.  I just couldn’t.  I watched our guest’s eyes dart around the room, looking for a path of escape as I came barreling down on him, but no matter how I pumped the brakes my mouth just wouldn’t stop.

The hubster finally seized on a millisecond of silence (supplied by my need for air) and stretched his arms, yawned, and claimed it was time for bed.  At 8:30.  Our guest seized the opportunity and made a break for his room, a polite good night trailing over his shoulder as he disappeared behind the door.

Needless to say, I woke up in the middle of the night feeling the peculiar kind of dismay and regret that only 3:00 a.m. can inspire.  Why do things always look so much worse at that time of night anyway?  The darkness and silence of those hours are like some kind of weird, mental magnifying glass, blowing up even harmless thoughts into looming, misshapen monsters, never mind an embarrassing, social faux pas.  I spent the next two hours tossing and turning, obsessively crafting a range of apologies (from dignified to humorous to prostrate) before finally dozing back off again from sheer exhaustion.

The hubster woke me up in the morning and the first thing I did was sit up, throw my arms around his neck, and tell him how sorry I was for being such a motor mouth.  He burst out laughing.

Tough night? He hugged me back.  You weren’t that bad.  Really.  I stopped it before it went too far.

And by god, I loved him for the effort….for trying to tell me it wasn’t as bad as it was, for laughing at my flaws instead of condemning them, and for shrinking the midnight monster back down to a more manageable size.  Whether what he said was true or not is beside the point.  (I’m pretty sure our guest paused and peered both ways before venturing out of his room this morning.)  The important thing is that he cared enough to say it.

I ended up not apologizing to the hubster’s friend.  Partly because I thought it would just embarrass him to bring it up, partly because I didn’t trust myself not to try and explain again why the topic of dying is so important to me.  He didn’t need to hear anymore about it.  Unlike me, his earliest experience with dying was traumatic and scarring, and no amount of sharing from my side was going to wipe away the long shadow it left in its wake.  I can’t believe I missed that.  I wish I would have talked less and listened more.

I’ll try and remember that next time.

copyright 2010 Dia Osborn

Let’s Have a Chat

I wanted to take a moment to talk a little about the delicate topic of assisted dying/assisted suicide.  There are a lot of places, nationally and internationally, wrestling with legislation and, in my opinion, if we’re going to try and do something as ambitious as legislating death, I think we should make a serious effort to get it right.  Because if there’s one thing that everybody agrees on it’s this:

Life is a fragile commodity and the off-switch for it only works once.

The reason emotions are running so high is because the stakes are so big.  Legislation affects all of us so it’s critical we don’t leave something this important solely in the hands of politicians and lobbyists.  Instead of just playing the voyeur by sitting back and listening to the attention grabbers argue about it in headlines and news clips, we the street people, the regular Joes and Joeinas living out here in the real world, need to educate ourselves more, nose around, dig up hidden angles, make sure we look at both the shining gifts and dark underbellies of every side of the argument.  And most importantly, we need to start talking with each other about it.

That’s right folks.  I said talking. About dying.  To each other, across political, religious, ideological, racial, cultural, economic, and national lines.  Believe it or not communication can be a good thing.  Done right, it actually makes us smarter than we were before, more informed and knowledgeable, more compassionate and caring.  True communication (read: listening as well as talking) not only offers our heads more information, it helps us build bridges heart to heart which, trust me, is something you really want in place when you’re hanging out there on the raw and ragged edge, desperately clinging to someone’s hand while you’re trying to tell them that you really, really want to live…or that you really, really need to die.

This is not an idea we’re talking about here people, it’s the real thing. I’ve been there, I know what it looks like.  With hospice I saw both Democrats and Republicans die.  I saw the faithful and atheists die.  I’ve seen pro-lifers and pro-choicers, rednecks and tree huggers, rich and poor, dark and light die and I’m here to tell you that in the end, all those shallow, gritty, surface labels slough off like old skin and the person left lying in the bed is just one more beautiful, luminous, vulnerable, aching, irreplaceable and longed for human being.  Somebody that gave every last one of us a huge gift by surviving this world for as long as they did.  Someone who was our companion, whether we knew them or not, and without whom the pocket of the world they were responsible for would have been something a lot less.

We have got to drop the harsh, combative, divisive judgments we keep stabbing each other with if we’re to have any chance of getting this right.  Every one of us deserves to have the final word on what’s happening to us and our own body, to live and then die in accordance with what’s sacred, beloved, and true to us.  Every one of us deserves to feel safe knowing that nobody will ever, ever, ever try to kill us when we are wanting and longing to live, and conversely that we will never, ever be forced to experience unendurable, unending suffering when we simply can’t bear anymore.

There are valid, important points being made on all sides of this argument that we all need to take into account before any final decision is made.  Because if we don’t, some helpless, dying person (actually a lot of helpless, dying people) are going to become the tragic victims of our legislation and if that happens, we will all be responsible for it.  It will be all our faults for the simple reason that we didn’t make more of an effort to listen to one another and come up with some truly wise, compassionate, thoughtful, and inclusive solutions.

Phew!  Okay.  Enough of the soapbox.  As you can tell, some things really wind me up.

So, do you find it hard to talk about assisted dying/assisted suicide with people who feel differently than you do?  If so, what makes it challenging and what would make it easier?  I would dearly love to hear what others are thinking about this whole subject and welcome your comments.  Some ground rules though:  be respectful, think before you talk, and contribute something valuable to the discussion.  (Hint: Personal insights and feelings are valuable.  Ranting, blaming, and proselytizing are not.  Name calling will be deleted.) And humor is the best!

I’d like to spend the next few posts exploring some of the surprising things I’ve been discovering through my own investigations.  Next week:  Why the disabled are worried about it and why the rest of us should care.

copyright 2010 Dia Osborn

Christmas Trees and Death Panels: How Fear Sets A Snare

(I apologize in advance.  This is a long post but there was a lot of important ground to cover.  I won’t do this often.  Promise.)

Like many people, the Christmas tree scene in the original 1972 Poseidon Adventure movie made a deep impression on me.  I was only fourteen when the movie was first released so I was impressionable.  Given.  But even so the scene is a classic.

It’s Christmas (New Years?) Eve on a luxury ocean liner out in the middle of the ocean and the crew and passengers are celebrating in the ballroom under the branches of a towering and heavily decorated Christmas tree.  As per disaster movie formulae, a tsunami formed by an earthquake off the coast of Crete comes rolling across the ocean and hits the ship broadside, capsizing it and tossing the above mentioned assemblage all over the slowly inverting ballroom.  Once the Poseidon settles in it’s new, upside down position, the Christmas tree is lying on it’s side on the ceiling-turned-floor.

Enter: Gene Hackman, a renegade missionary.  He swiftly marshals a group of men to raise the tree again for use as a ladder to access a service door at the bottom-now-top of the room.

We’ve seen a lot of random chaos and horror up to this point but Fear as a saboteur has been suspiciously quiet.  That changes once the Christmas tree option is presented.  Fear immediately recognizes a golden opportunity and steps in to set the first, big snare of the movie:

The survivors each have to make a choice.

Reverend Gene, on the one hand, tells everyone to climb the Christmas tree and head for the hull of the ship, because that’s the only logical place where rescuers could ever access survivors.  Reverend Gene represents original thinking and a challenge to the status quo.

But the ship’s purser disagrees and tells them no, no, no, they must all stay put in the ballroom and wait for someone to find and rescue them there because the ballroom is where rescuers will search.  The purser (read official man in a uniform) represents standard thinking and the status quo, something fatally attractive to anyone with a strong herd mentality.

It was painfully clear to all of us in the theater that the Rev was right and everyone needed to climb.  Fast.  We knew that those who couldn’t rise above convention and think outside the box were gonna die, die, die, horribly and soon.  We knew this because the whole scene was built around a basic rule of human behavior; terror tends to drive thinking out of the cerebral cortex (rational, logical, problem solving) and into the amygdala (instincts, habit, and fear).  Anytime we’re confronted with a new and terrifying situation, if we can’t master our emotions and analyze circumstances objectively then we revert to old mental ruts and knee jerk reactions.

We follow the herd because by god there’s safety in numbers.  Right?

In this case, not so much.  Fear springs the snare, paralyzing just about everyone there.  The majority of people listen to the purser and decide to stay put.  Only a handful climb the tree and, once the chosen few are safely ensconced up in the only possible escape route, explosions sound in the belly of the ship, windows and skylights shatter in the ballroom, the Christmas tree topples back down to the floor, and deep, ocean waters surge in, drowning every last screaming, thrashing person who made the mistake of defaulting to what felt, instinctively, like the safest bet.

Working in the hospice field, one grows familiar with fear and its many, (many, many, many, many, many) snares.  A fear of dying can often drive us to make unwise care and treatment decisions.  From what I can tell, a lot of this comes from the profound lack of education and understanding that exists in this country around the dying process.  The fierce denial we’ve embraced as a society doesn’t leave much room for the cerebral cortex to think about the subject at all, which means that most of the default choices people make at the end remain firmly embedded in the instinctual part of the brain.  How could it be any different?  There are few instincts more powerful than the one to survive and, if we don’t have some extraordinary and compelling reasons not to, we’ll naturally choose to continue treatments beyond (sometimes far beyond) the point where our doctors, or even we ourselves, think we should.

Yet at the same time, most of us don’t want to die wrapped up in tubing and drugged into a stupor, or with flash paddles sending electric jolts into our heart while our family looks on in traumatized shock.  But it happens all the time anyway.  Why?

There are a host of complex factors that contribute to the problem but ultimately one underlying cause rules them all:

We persistently and adamantly refuse to talk about dying.

We play right into one of Fear’s greatest snares.  Fear loves the fact that we won’t talk about dying because that prevents the cerebral cortex from getting anywhere near our decision making.  How can we possibly evaluate what’s been going wrong, learn anything new, or change anything for the better, without some calm, compassionate, respectful, thoughtful discussion about what’s going on?  We can’t.  Our fearful silence gives the old habits and instincts free rein and we default, over and over again, to the same flawed choices.  That’s how, even if it’s the last thing we ever wanted, we still so often wind up cocooned in IV lines without so much as a spare patch of skin for our loved ones to kiss or hold.

This reluctance and failure to talk about dying is the norm in individual cases.  But it happens on the national level as well, and a prime example of it  just played out during the recent health care reform debate.

Remember the small provision in the health care bill (section 1233 of HR 3200) entitled Advanced Care  Planning Consultation? (Otherwise dubbed, in a bewildering but imaginative twist, as  Death Panels.) Amazingly, it constituted only three pages out of roughly 2000, yet it wound up hijacking the debate.  Why?  Because it asked us to start talking about the dying process.  More specifically, our own dying process.  It boldly and openly addressed the current, gaping need that exists for each of us to have a conversation with the doctor who’s treating us about how we want that treatment to look.

But in so doing this tiny provision struck a major taboo.

Let me reiterate here.  The provision didn’t try to address how we’re treated, it just wanted us to start talking about how we’re treated, but it’s authors may as well have suggested we all drink poison Kool-aid.  They failed to understand how profound the fear of talking about dying is in our society, and that failure is a big part of the reason why the whole thing blew up.   

Personally, I think legislation of some sort is a good idea, but this version was doomed to fail.  I mean, come on.  Any politician planning to link death, law, and government is going to have to make a serious effort to engage the general citizenry in a calm, compassionate, respectful, informative, and thoughtful discussion about the whole thing first.  They need to institute a massive educational outreach to explain why a conversation about end of life care is so essential.

They need to do a much better job of explaining its gift.

There are stories out there that we all need to hear.  Stories about how drastically a simple end of life care discussion can improve outcomes for individuals, families, and entire communities.  For instance, we needed to hear about the two studies done by Aetna insurance.  The ones where the terminally ill who had access to both ongoing treatment and palliative and hospice care, cut their emergency room visits by half and their hospital and ICU visits by two thirds.  Costs dropped by almost 25%.  And most importantly, these people reported much higher levels of satisfaction with their care.

We needed to hear about the compelling evidence emerging from the Coping with Cancer study that suggests end of life care discussions not only decrease suffering and costs, but also increase both quality of life and even life expectancy.  As Dr. Atul Gawande explains in his article Letting Go: What should medicine do when it can’t save your life?, “These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression.”

And then there is the interesting case of La Crosse, Wisconsin, where life expectancy is actually one year longer and end of life costs about half the national average.  This is because  some far sighted medical leaders in the community got together back in 1991 and started a campaign to get physicians and patients to discuss end of life wishes.  Again from Dr. Gawande:

“By 1996, eighty-five per cent of La Crosse residents who died had written advanced directives, up from fifteen per cent, and doctors almost always knew of and followed the instructions…Answers to the list of questions change as patients go from entering the hospital for the delivery of a child to entering for complications of Alzheimer’s disease.  But, in La Crosse, the system means that people are far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear…The discussion, not the list, was what mattered most.” (Emphasis mine.)

These amazing stories and others like them are currently opening a lot of eyes to the wide ranging gifts that come from having a simple discussion about dying.

It would have been helpful if we heard these stories before the legislation was introduced.  A few realized their error and tried to get the news out, but it was too late.  Fear had already seized another golden opportunity (politics!) and set its snare.  The term Death Panels rose from the depths, Fear immediately latched onto it like a monster from a nightmare, and our group, instinctual  brain responded with a great big Hell no!! Explosions sounded from the belly of the debate, windows and skylights shattered, and Provision 1233, like the Christmas tree, slowly toppled to the floor, destroying any hope for mutual, constructive discussion during this round.

Which leaves the majority of those who are currently dying in much the same position as the unlucky Poseidon passengers who decided to sit and wait.  They’re still not having that conversation about end of life care choices, so they’re still missing out on the help, relief, grace, and extra time which are its gifts.

But there’s good news.  We don’t need legislation to talk about dying.  We can talk about it any time we want.  We can figure out, right now, who it is we’d like to choose for us if a time comes when we can no longer choose for ourselves.  Then we can talk with them, right now, as long or as often as we need to.  We can tell them about what’s important to us and what scares us.  What we’re hoping for and how hard it is to trust with something this big.  And they can talk with us, too, about how badly they need to know what we want and how scared they are of making a wrong decision.  About how much they love us and how afraid they are of the loss.

Then we can go in and sit down with our doctors and tell them, too, about these frightening, tender, sacred things we’ve discovered about each other and ourselves.  We can give them the vital information they need to have, so they can care for us in the way we want most.

If we can do all that then the legislation that follows will be far more informed, compassionate, and respectful…the kind of legislation that everyone can trust…because we’re finally talking.

If you’d like to start talking about dying and end of life care but aren’t quite sure how to start, here are a handful of reading resources that might help jump start a conversation:

1) Dr. Atul Gawande, Letting go: What should medicine do when it can’t save your life? (13 pages long but more than worth the time required to read it.)

2) Final Gifts (This book is a huge favorite with the hospice crowd…curious, beautifully written, and uplifting.  Good for easing fear.)

3)  Palliative Care Blog (Fantastic resource for everything end of life and palliative.  Contains a wealth of links to other resources as well.)

4)  Talking About Death Won’t Kill You (The title of this book pretty much says it all.)

copyright 2010 Dia Osborn

Update 8/25/10: Here’s some news. Last week New York state passed a bill (The New York Palliative Care Information Act) requiring doctors to offer terminally ill patients information about different end of life options.  It’s essentially Provision 1233 resurrected in state form.  Behold!  The Christmas tree rises again.  What I found most interesting was that the bill was passed over the objections of New York State’s medical society.  The doctors opposed it saying ‘the new law would intrude “unnecessarily upon the physician-patient relationship” and mandate “a legislatively designed standard of care.”’  Truth be told, there are studies showing medicine tends to attract people with the highest levels of anxiety about dying. Doctors as a group tend to be more reluctant to talk about it than the average person, yet they’re now the ones who are legally responsible in New York to initiate the conversation?  Hmmmmm…  What does this bode for the future?  Hopefully, now medical schools and other sources of medical education will provide more training for how to talk about dying.  As Dr. Gawande stated in Letting Go, it’s a skill that needs to be developed just as much as surgical skills.  We’ll see.  In any case I hope this will stir up more constructive discussion!