Odd Thing About Dying #1: They’ve blocked most of the exits.

800px-Emergency_exit_Stockholm_metro

Oh, those Swedes.

I was thinking the other day about important things I learned while working with hospice (and by “important” I mean things like what surprised me to the happy upsideand what do I need to know to make a graceful exit when it’s my turn?) and a few things came up.

The first is a piece of information that falls under the Graceful Exit category and is, I think, pretty important. Perhaps even critical in the same way that knowing where the emergency exit doors are located on a plane can be critical. It goes something like this:

If the current medical system was a building that we’re supposed to enter at birth and leave at death, then there’s a serious flow problem because they’ve blocked most of the exits.  

There’s basically only one official door left where people trying to get out are allowed to leave the building without a fight. (More on that below.)

No doubt about it, we’re living in an unusual age.  Dying has become very hard to accomplish, which is weirdly wonderful until it’s actually time to die and then it totally, totally sucks.  It wasn’t always like this.  For roughly the last thousand years of Western civilization, people used to die according to a fairly simple formula:

a) They lived for a time.

b) They got really sick or severely injured.

c) They realized they’d never get better.

d) They summoned, reconciled, forgave, received forgiveness, and bequeathed.

e) Then they went ahead and died.

(Except for those who died suddenly and went straight from A to E.  It’s interesting to note that while nowadays many feel that’s an ideal way to go, historically it was frowned upon.  Dante for instance, relegated some of the souls that died unexpectedly to the lowest circle of hell which, I don’t know, seems a bit harsh. I’d be curious to know his thinking on that one, although he looks like a scary guy to argue with.)

Portrait_de_Dante

This by Sandro Botticelli.

Due to some of our pretty extraordinary medical advances however, that ancient formula isn’t working so well anymore and while we’re still following the first two steps…

a) We live for a while.

b) Then we get really sick or severely injured.

…once we get to Step C things fall apart at the seams.  Our bodies can now be kept alive almost indefinitely which has made it a lot harder, sometimes impossible, for people to either slip out without any fuss or at least figure out when it’s time to let go.  I’m not exaggerating here.  The bottleneck of bewildered, milling, hospital gowned people trailing IV poles and looking for a definitive answer has grown so massive that it’s threatening not only our healthcare system but our entire economy.

So why is this happening?  Well there are actually a lot of reasons but I’m only going to address two of them here.  The first is that, while modern medicine has a variety of goals, there’s a kind of One Goal To Rule Them All.  Our current healthcare system has evolved around the central purpose of keeping everyone alive for as long as possible which, for the vast majority of our lives, is a good, noble, sacred thing, and one which I think we’re all pretty grateful for.

The problem arises when someone realizes that oh, it’s my time, so they gather their things and head for the nearest exit (these are the doors with signs overhead like Heart Attack, Pneumonia, Sepsis, Aneurysm, Dehydration, Flu, Respiratory Failure etc.)  But there are guards on all these doors who turn them back with shock paddles, intubation, or offers of antibiotics, vaccinations, IVs, etc., sometimes over and over and over again.  People trying to leave the building often have to spend a lot of time and money frantically going from door to door until they’re finally so frustrated that they just overpower the guards and escape anyway.

I read a recent story of an elderly gentleman with a heart condition who decided he’d lived a long enough/good enough life and was now ready to go.  After much deliberation he decided to decline any further interventions and treatments, filled out an advance directive, got his wife and doctors all on board with his decision, and even signed a Do Not Resuscitate order.

Then he went golfing where he had a major heart attack somewhere around the seventh hole.  Panicked bystanders called 911 which, unfortunately, activated the guards standing next to that particular door.  The EMT’s sprang into action and once they arrived on the scene nothing could really stop them.  (Please keep in mind that emergency responders are bound by some strict legal codes to preserve life and deliver it to the hospital.)  Evidently, even the man’s advance-directive-bearing-wife couldn’t get them to stop (I wonder where the DNR was and if it would have made a difference?) and so our elderly gentleman had to endure the overwhelming pain and multiple broken ribs of CPR along with many other uncomfortable resuscitative efforts in both the ambulance and the emergency room before he finally died from his heart attack anyway, just far more broken, disheveled, and black and blue than if he’d been allowed to die back on the green. (And then his wife got the bill.)

Needless to say this was not how he wanted to exit the building.  At all.  Most people don’t want to leave this way.  Nevertheless, this kind of situation happens over and over again because right now there’s still a sizable disconnect between emergency medical services and end of life care.  (And preventive services and end of life care.  And routine care and end of life care.  And…well, pretty much the entire medical system and end of life care.) This kind of thing happens in nursing homes and assisted living facilities and hospitals, too, and everyone knows it’s a big problem. The good news is that solutions are currently being sought.  The bad news is a lot of the problem is structural and hard to change.  Even so I’m confident we’ll figure something out eventually.

So in the meantime, what’s a person who’s ready to go and wants to avoid extraordinary medical measures to do?

Well, this is where that One Official Exit I mentioned earlier comes in.  You’ve probably already guessed by now but the sign over this door reads HOSPICE (and to a growing extent the up and coming PALLIATIVE CARE.)  Just so you know, people who queue up at this door are hands down the most likely to have their passports stamped and passed right on through in a graceful, peaceful, unmolested way.

Sounds simple enough, no?  I thought so too, but in reality this particular door, even though it’s the one that everyone respects and agrees on, is still the most misunderstood and underutilized exit of them all.  Why?

Well, that brings me to the second reason why people tend to bottleneck in end-of-life care these days, but I don’t have room for it here so I’ll have to cover it in the next post:

Odd Thing About Dying #2: We’d like some destiny with our death please.

copyright Dia Osborn 2013

Related articles:

“Maybe we need to redefine “Palliative Care.”

“Hospice Misunderstood by Patients, Providers Alike”

“Why MOST doctors like me would rather DIE than endure the pain of treatment we inflict on others for terminal diseases.”

Advertisements

Preventive Cancer Screenings: “Serpentine Shel! Serpentine!”

I talked about the terrible experience we had last year as the result of a false positive PSA test for the hubster in the post False Positives Are The Tenth Circle of Hell.  Since then, I’ve been following closely as the U.S. Preventive Services Task Force tackled the question of whether PSA tests do more help or harm and am am not surprised that, today, they announced the answer is harm.

There’s an opinion piece in CNN.Opinion today, by Otis W. Brawley, chief medical and scientific officer of the American Cancer Society and professor at Emory University, where he eviscerates the practice of mass screenings for PSA that has become the gold standard.  Particularly chilling is his memory of a discussion he had with the marketing executive of a major American hospital fifteen years ago who was explaining his lucrative “prostate cancer business plan.”

As he explained it, for every 1,000 men over age 50 who were screened at the mall, 145 would have an abnormal screen, and 135 would go to his hospital for evaluation. Fees collected from them would easily cover the cost of the free screening event. About 45 in that group would have cancer; the rest would be false positives.

The marketer had figured out how many men would be treated with surgery, radiation, and hormones. He had estimates of all the money the center would make from treating all 45 cancer cases. He knew how many men would be treated for urinary incontinence, and what his net profit for treating that would be. Amazingly, he even knew how many of the men would want penile prostheses surgically implanted to treat their impotence.

I asked him one question: “How many lives will you save if you screen a thousand men?” He looked at me as if I were a fool, and said, “Don’t you know? No one knows if this stuff saves lives. I can’t give you a number on that.”

I’m keenly aware and deeply grateful that the adverse effects of this test on our lives were relatively small.  An invasive and potentially dangerous biopsy is as far as it went.  There are a lot of men out there (about a million) who fared worse.  I’m also aware that with a family history of the disease, the hubster is at higher risk than the average man and a false positive on the last test doesn’t mean he’s now bullet proof.  Future PSA tests are by no means off the table but they’ll be approached with more caution and far better reasons in the future.

What makes me so angry is that the considerable risks involved were either not explained to us fully or glibly dismissed before the hubster obediently began the regimen of annual PSA testing.  Pretty much all we heard for two decades, in the media and in doctor’s offices, was the mantra-like assurance that it saves lives, this in spite of the fact that there was no direct clinical evidence to support that claim.  It blows my mind that the first clinical trial suggesting that PSA mass screening does save lives wasn’t published until 2010, and even then the trial had internal inconsistencies that make it suspect.  From Otis Brawley again:

 It showed screening saves lives in the Netherlands and Sweden, but not in five other European countries. Even the positive parts of that study did not show a considerable increase in lives saved.

It makes me wonder what really drove the push for mass screenings over the last twenty years?  The above mentioned hospital marketing executive springs to mind.

The good news is that everything we went through with the hubster’s PSA false positive broke trail for my own more considered, skeptical, research-laden approach to the mammogram alarm I received shortly thereafter.  Before the PSA fiasco I, too, would have obediently returned to the hospital for further scans and a probable biopsy (considering the incredibly vague nature of what was flagged on my original scan.)

But because we were already once burned, I dug in and started looking for more information.  I discovered that with all factors considered I’m actually in the lowest risk category for breast cancer, that an “architectural distortion density” is basically a last shotgun-scatter call for a radiologist practicing defensive medicine, that the rates of mammogram false positives range anywhere from fifty to eighty percent depending on who’s talking, and that no less than five different factors put me in the highest risk category for a false positive diagnosis.

I also learned that once a woman has one false positive, her mammograms are at much higher risk for being flagged again, and that women with false positives receive more diagnostic scans and resulting radiation exposure than women who actually have breast cancer.  Add to all that the fact that the rates of antibiotic resistance infections received in clinical settings are increasing at a clipping pace, and I decided that a biopsy should probably be avoided if at all possible.

Weighing everything I learned, I eventually realized that if I adopted a watchful waiting approach, the odds were in my favor for a good result.  I was right.  After waiting for eight months I finally went back for a follow-up mammogram that could be reasonably compared to the first one, and the new scan was deemed clean.  Nothing had changed indicating nothing was growing.  I was satisfied.

Granted, as a depressive, I still lost most of last year to the threat of slipping into another episode from all the stress and anxiety, but at least I managed to avoid most of the physically invasive fall-out.  And for last year at least, that was enough.  However, in the future I’ve decided not to pursue annual screenings unless I find a lump.  For me, the risks outweigh the benefits.

And that’s the main takeaway I’d like to offer with this post.  Each person is completely unique and there is no medical screening, procedure, or treatment out there that is a one-size-fits-all solution.  On the one hand, be skeptical.  Ask questions.  Do research.  Learn from past mistakes.  Make educated choices and, if your doctor doesn’t provide you with all the information, then go out and get it on your own.  Whether you’re confident in the continuing value of PSA tests and mammograms or not, make your own decisions based on what you feel is right for you.

But on the other hand, respect and support the directions that others are exploring, too, even if they’re different directions than you would take.  I felt mostly alone last year, trying to figure out what to do, because almost everyone I tried to talk to went straight to an expectation of the worst possible outcome.  I could see it in the back of their eyes, that dark flash of terror like they were looking at a woman who was about to be dead because she wasn’t doing what she was supposed to.

I’m not anti-preventive screening.  Far from it.  A pap smear in my twenties probably saved my life and, even with all the other chaos going on last year, the hubster and I both still got our colonoscopies.  But honestly, most of my preventive energy and attention goes into how I live because after working around the dying I finally got it, how little power we’re ever going to have where death is concerned.  I don’t want to waste the precious little time I have tilting at windmills.

I’d rather just live openly with death as my inevitable companion.  I’d prefer to amble around, and graze, and play, and explore the meadow of my life, relaxed and peaceful…and then die…rather than trying to zig zag back and forth across it (Serpentine Shel!! Serpentine!), bent over through the grass trying to hide from it all the time…and then die.

Because that’s exactly what I felt like last year; Alan Arkin trying to dodge bullets in the original The In-Laws.  And pooh on that.  I remember again the wisest thing my father…a grizzled, old warrior with a couple of gruesome wars under his belt and a vast experience of death…ever said to me:

Dia, if it’s your time to die then it’s your time to die, and nothing’s gonna save you.  But if it’s not your time to die, then it’s just not, and there’s nothing out there…nothing…that can kill you.

As a parting gift, here’s one of the funniest movie scenes of all time: the serpentine scene from The In-Laws.  Watch it and weep.

copyright Dia Osborn 2012

Part V: Advance Directives: Best To Wish Carefully With A Genie

From The Arabian Nights by Maxfield Parrish

(This post is the fifth in a series on advance directives.  The last post was Part IV: Advance Directives: Will They Be There When We Need ‘Em?)

February is here!  After eleven years of procrastination, our self-declared Advance Directives Month has arrived and the hubster and I are finally tackling the forms. It’s going a lot better than we expected.  A LOT.  Like finally-easing-that-horrible-fear better.  Here are a few things we’ve learned so far.

1)  NOT ALL FORMS ARE CREATED EQUAL.

In an earlier post I mentioned that I was planning to use our state advance directive forms.  But after downloading and looking them over I changed my mind because, unfortunately, they made me feel even more confused, uneasy, and out of control about the future than I already did.  I realized a big part of my procrastination was because I’m afraid of signing something legal that I don’t fully understand, and with the state forms?  That’s pretty much guaranteed.

I needed a form that would not only list the basic legal choices but actually explain them.  I wanted some context.

In Part III: Advance Directives: Forms and Where To Find Them I researched a variety of other options, and there were two I ultimately considered as alternatives.  The first was the Lifecare Advance Health Care Directive and the second was MyDirectives.com because they both offered the strong educational/support element I was looking for.  We eventually decided to go with Lifecare for a variety of reasons.  It was just a better fit for us.  However, a person looking for something shorter and simpler might prefer MyDirectives.com.  I’d urge everyone to check out all the options before making their own choice.

2) THESE FORMS ARE ULTIMATELY REVEALING OUR MOST FUNDAMENTAL BELIEFS ABOUT THE VALUE OF LIFE.

And I thought they were just about how to die.  Silly me. 

Far from making us uncomfortable, so far the process of filling out these forms is kind of freeing.  It’s easing that vague, horrible dread that tends to linger out around the edges. (Dare I use the word…empowering?)  It’s helping us both define the basic, essential, and worthwhile elements of life, the ones that make it worth living for us, and there’s this funny kind of anchoring feeling that happens each time either of us hits one on the head.  It’s an aha!  Like getting a shot of strength in the arm that instantly settles the butterflies and clears the eyes.  And what’s really amazing is how much that sense of anchoring lessons all the other clamoring fears like What if get hooked up anyway?  What if I lose my mind and can’t even remember what I want? What if I lose ALL CONTROL!?

That last one is the biggie of course, but it’s extraordinary how just sitting and talking about it together is helping to ease it. Which leads me to the third insight we’ve had so far:

3)  IF POSSIBLE, IT’S BETTER TO TACKLE THESE FORMS TOGETHER.

I’ve been saying all along that, no matter how good, complete, and legal the forms are, the chances of them doing much good without having conversations with the other people involved are a lot smaller.

But now I’m discovering there’s an additional…and even more profound…benefit to the hubster’s and my conversations: They’re improving the quality of our life and relationship right now.  I’m not kidding.  We’ve been together for twenty-three years and we’re learning things about one another we never knew before.  Plus, each of us is coming up with unique questions…and insights…and fears…and strengths…that the other gets to learn from, too.  The sense of alliance and trust we already had is getting deeper as we go.

We totally have each other’s backs.

4)  IT’S BETTER TO TAKE OUR TIME WITH IT.

Since the Lifecare Advance Health Care Directive is a long form with a lot of supporting information we decided to break it up over a few weeks.  We’re giving it the hour on Saturday mornings that we already committed to emergency and long-term planning (a new project that we’ve both resisted but is turning out to be remarkably productive) and we had our first sit down with the form last week.  The hubster read from the advance directive while I read from the supplemental Guide (the guide isn’t absolutely necessary but it’s VERY helpful)…and the information is, surprisingly, kind of fascinating.

It covers a lot of history, different legal and medical cases that have shaped thinking over time, medical and legal boundaries that define what we can actually ask for, definitions of what all the different terms mean, and how to bridge the gap between what lay-people tend to want and what medical people can actually do. The overall learning curve is steep but the Lifecare directive is providing a much larger context to help us understand what we’re doing and why, and this leads me to the last important point:

5)  WE DIDN’T KNOW JUST HOW MUCH WE DIDN’T KNOW.

Today’s medical technology is complex, changing, overwhelming, and often totally incomprehensible.  Even so, the hubster and I HAVE to figure out how to navigate it.  (Either that or find a cave somewhere out of ambulance-reach.)  I think most of us want the miracles modern medicine has to offer, but we’d just as soon do without the extra burden and responsibility that goes along with having them.

Unfortunately, that’s not possible.

At it’s core, modern medical technology is basically another genie in a bottle and, like any genie worth its salt, the wishes it grants us are subject to all kinds of unforeseen consequences. It’s pretty easy to wind up with a result that doesn’t look anything like what we thought we’d asked for.

The shrewd Bottle-Wishers among us (generally those with a lot of exposure to the system) have seen firsthand how unpredictable wishes can be, so they tend to think theirs through very carefully beforehand.  They ask, they learn, they craft, they plan…then they write it down.

Newbie wishers, on the other hand, mistakenly believe the genie will somehow understand what they mean however garbled or incomplete.  This, of course, makes them the ones more likely to wind up with something they didn’t bargain for.  (Tubes, drool, and paddles, my friends.)

The hubster and I would prefer to sit with the shrewdies, no matter how steep the learning curve.

I didn’t understand when I first started this project how genuinely glad I was going to be that I did.  Or how much more I’d wind up getting out of it than I’m putting in.  On the one hand, it’s taken a lot more time and energy than I’d anticipated, but it’s already paying off in some handsome and totally unexpected, dividends.

So far, so good.

Next post I’ll start talking specifics about my own choices.

(Next: Part VI: Advance Directives: Mine)

copyright Dia Osborn 2011


The Laughter and Sorrow of Being There

Luna Moth

I’d forgotten…how much better it is to be there when someone dies, than not.

Our dear friend Mr. B died at home, surrounded by those who loved him, last Sunday morning…which was actually pretty fast.  The doctors said he’d have more time, but then I’ve found that doctors usually overestimate;  partly because they feel it’s kinder and partly because they tend, personally, to be more afraid of death than the rest of us.

But Mr. B was glad it didn’t take as long as they said it would.  After four grueling, futile months of rotating between hospital, rehab center, and wound care center he was more than ready to move on.  He was grateful.

That’s the often overlooked gift of extended suffering.  Horrible as it is, there’s simply nothing like it for helping us let go of this otherwise far too rare and luminous world.  If something didn’t come along to tarnish the glow and loosen our grip, dying could (and sometimes does) drag on forever in this current age of limitless medical intervention.

Mr. B and his beautiful wife, Mrs. B, wanted the hubster and I to come and be there with the family during the passage; to help, to laugh, to cry, to steady, to witness.  I was surprised, deeply touched, and thrilled.  I love “a good death”; the kind that happens when someone dies prepared, surrendered, and surrounded.  There’s something potent and magical that happens when a family assembles to lift and love one of its members through the final transition,  something mystical and disorienting that occurs when a body and the life that inhabited it whisper farewell and break their long embrace.  Standing as witness to these things both shatters and transforms me, every time; actually it shatters and transforms everyone that’s lucky enough to be there.

Strangely enough, this…the good and healing part of dying…is the aspect I somehow forget about in between.  I’m not sure why exactly.  Maybe because, in spite of its potency, the experience is nevertheless fleeting and insubstantial and therefore easily overshadowed once it’s past.  Or maybe I forget because this part has become so invisible in our culture of death aversion that’s its just hard to hang onto.  I don’t know.

What I do know is that there’s an energy, a force generated during a good death that both cuts and cauterizes simultaneously.  It mauls me extensively, each time, but then it lays eggs of some vast and tender love there in the wound itself, as if it was some horrible yet sublime parasite, transforming me against my will into something better.   Someone more courageous, caring, and gentle.  Somebody wiser.

I think that was the gift Mr. B. wanted for me..for all of us.  I think that underneath everything else that was going on, somehow he intuitively understood that giving us all a good death would make the gaping hole after he left easier to survive.  Easier to recover and return from.  He used his own dying to create a final, profoundly generous, and life-affirming act.

copyright Dia Osborn 2011

False Positives Are The Tenth Circle of Hell

image from Dante’s Inferno by Giovanni Stradano

Four months of hell are officially over and I guess the news is good:  the hubster does NOT have prostate cancer.  Hooray.  Of course he never had it to begin with.  This whole, horrible journey has just been one big, fat, fake-out from the word go.   He didn’t have prostate cancer when December’s PSA number came back elevated, he didn’t have it through the roller coaster of doctor appointments, advanced testing, and useless treatments to rule-out-other-causes that followed, and he didn’t have it when they did the biopsy last week.

Nope.  The news is just great.  And it only cost us a horrible first week of initial shock and icy paralysis, four more months of chronic, low grade anxiety and fear, an early nuclear blast of antibiotics that temporarily wiped out his entire immune system whereupon a subsequent cold turned into a bad chest infection with a resulting week missed from work, a painful biopsy with risk of infection accompanied by yet another nuclear blast of antibiotics, additional missed work time for all the appointments and phone calls, a great big round of terror for his parents, a few thousand dollars from our savings, and a medium-grade case of post traumatic stress disorder for me.

(And now the doctor wants him to go on a prostate drug for the rest of his life and we’re looking at a much higher risk for future false positives.  Oh boy.  Maybe, we’ll get to do this every year.)

Honestly?  I’m not sure what to think about everything we just went through.  I feel battered and numb.  I don’t even feel grateful that the news was good because it was never bad to begin with.  Somehow it feels more like we were duped.

Look, I understand the thinking behind preventive screening and yes, certainly, I agree there’s some profound value hidden somewhere in this monster of a system we’ve created.  But I also know there’s something really, really wrong with what just happened to us.  Really wrong.  I’m not clear yet on what that is exactly, and I’m not sure how the hubster and I should change our approach with prevention going forward to decrease the chance that it will happen again.  But I do know this:

1) the U.S. has the highest rate of medical over-treatment in the world,

2) there’s broad concern about the kind of detrimental side effects from false positives like we just experienced (here’s another example affecting newborns), and

3) the science on the actual effectiveness of various screenings is still evolving which means, to a certain extent, we’re all playing the role of guinea pigs.

My instincts are screaming that the system is laced with way too much fear…far more than the situation warrants…and this fear is interfering with our group common sense.  It’s not that cancer and heart disease aren’t real threats, but this frantic, escalating fight to avoid them is eating up ever-increasing amounts of the perfectly-healthy-and-okay part of our lives.

You know what this whole thing reminds me of?  The ever-fabulous Robert Preston playing a slick, handsome, traveling salesman in  The Music Man.  Harold Hill, the con man, rolls into town one day convincing everyone they have a serious problem and he has the only solution.  He seizes on a common, reasonable parental fear and blows it up into a looming monster threatening to engulf the entire town until, predictably, everyone buys whatever it is he’s selling.

I’m not sure who exactly is playing the role of Music Man in this whole prevention/screening/false positives/over-treatment monster we’ve created, but I sure do feel like the hubster and I bit the hook.

Anyway, on a lighter note here’s a Youtube clip of Bob singing “Ya Got Trouble” in the movie.  (It’s a classic and SO much fun!)  Watch how the townspeople fall for his spiel, hook, line and sinker.  Who can blame them?  Call me a sucker but I’d buy anything from this guy.  My father-in-law (a life-long, very successful salesman for IBM) calls this the best sales training video of all time.   The first nine seconds of the clip are sort of dark but it clears up after that.  Enjoy!        

copyright Dia Osborn 2011

Update:  10/10/11  Looks like I’m not the only questioning  what’s going on.  New recommendations are being prepared.  See following article for details.

PSA Exams Should End in Men Without Cancer Symptoms, Panel Says: 

A draft report, released today by the Health and Human Services Department’s Preventive Services Task Force, recommends against so-called PSA tests for men who don’t have symptoms that are “highly suspicious for prostate cancer.”

A View From The Edge, Part I

It’s tax season and I’m buried.  No time for writing much of anything but expletives on the bathroom wall, so the next few posts will be an excerpt from the book.  I’d love to know what you think!

Chapter 5:  A View From The Edge

Journal entry:

…I lay there on the hard ground in the cold and dark, peering up into a universe unimaginably deep, and watched as the stars shifted and flowed across the heavens.  I was comforted—remembering I’m a part of something far bigger than just this ordinary, deeply beloved world.  And it’s like that for me, again, in the dying world.  Where I get the opportunity to peek out beyond this small life, if even just for a moment, at something that’s both so vast and yet impossibly, delightfully hidden most of the time–disguised by our bodies and abilities, memories and choices.

By everything we keep mistaking as ourselves.

With the advent of palliative and hospice care we’ve seen the first glimmers of change but, by and large, the modern, western medical paradigm still looks at dying as a failure and a waste.  The metaphor I hear employed most frequently outside of hospice, by medical professionals, media, friends and neighbors, is that death is the enemy and all of us must wage a war against it.  Either individually within our own, dear body or as a group using the big guns of scientific advancement and policy change.  The metaphor of war is a powerful one, invaluable for generating the will necessary to marshal our resources for a single minded, all out attempt to get better–to survive and thrive as an individual or a society.

But what many don’t realize is that the cost of a martial metaphor is a high one.  In a war whose sole aim is to preserve life, those who perish anyway die as casualties and losers.

It was always difficult to watch—the myriad ways this sense of failure manifested in the people I helped care for.  Some felt bewildered and abandoned by a system that only seemed interested if there was still a possibility of cure.  Others, that dying was their own fault and a punishment of some kind—because they didn’t get a second opinion, have more insurance, take better care of themselves, screen often enough or for the right disease.  Some felt unlucky because they didn’t respond to the drugs or treatment the way they were supposed to.  Others felt guilty because they’d just grown too exhausted and frail to fight anymore.

It seemed more than a little strange to me.  Dying is already such hard work.  Why in the world would we adopt a way of looking at it that actually increases the suffering involved?  Perhaps it’s the natural outcome of our separating dying from life, of deeming the first as a terrible and monstrous thing and the second as our only sanctuary from it.  Whatever the cause, an unintended outcome of focusing wholly on the protection and preservation of life—of regarding our natural transition into death as a sinister and horrible collapse—is that we’re unwittingly multiplying everything about dying we fear most.

It’s ironic. While the duration and quality of life have unquestionably improved over the last century, the quality of dying has been in a corresponding decline.  All our efforts to delay and defeat death have unintentionally prolonged the process so that it now takes longer than ever.  It involves new and novel layers of suffering caused by an ever-multiplying array of interventions, requires increasingly complex—sometimes unbearable–choices, and costs so much more that it frequently not only strips surviving loved ones of any remaining resources but leaves them crushed under a staggering burden of debt.

Over the years I noticed that frequently, especially in the case of a last minute referral, by the time a dying person and their loved ones washed downriver to us, we were among the first people they’d encountered who weren’t afraid of the mists gathering around them.  Every good hospice team has a host of important jobs to do but one of the first is the simple act of trying to normalize what’s taking place, to convey in both words and demeanor that in fact, everything is still okay.  We see and welcome whoever it is wholeheartedly because they are, regardless of what’s happening, still alive and vibrant and real.  If there’s enough time, if they’ve been referred for end-of-life care early enough, that wild, spinning-out-of-control feeling people so often experience in the deteriorating pursuit of a cure has a chance to stabilize, allowing them to find firmer ground so they can return to the rest of their lives.  It can make all the difference between someone fully embracing whatever time they have left or just gritting their teeth while sliding over the cliff.

I began to wonder if the transition from living to dying need be quite this traumatic.  Could there be some way to weave the acceptance of dying still largely unique to hospice and end-of-life care into the branches of medicine which focus primarily on cure?   I started casting about in my mind for a bigger metaphor than that of war I could employ, one that would contain both my longing and reverence for life as well as a deeper wisdom and regard for death.

Something that would not only arouse and inspire me to live but also reassure and cradle me when I die.

*          *          *

In the fall of 2001, after years of navigating the ups and downs of a deep depression, I decided to try a new and novel treatment option.  I was nearly paralyzed again—all the diverse and multiplying anxieties that had flourished in me over time eventually consolidating into a single, more efficient terror of just leaving the house—and one day it occurred to me that I was at a threshold.  I was either going to have to take some drastic, even reckless action to counter the trend or else surrender to life as a shut-in.

So the day my husband suggested that we hike into the mountains separately for a spiritual retreat, to spend three days and three nights alone with God at 9,000 feet in autumn during bow-hunting season without flashlight, fire, or food, something desperate leaped up inside me shrieking YEEEES! Cal had been doing this kind of thing for years, had invited me to join him every time he’d gone in the past, but somehow it never held much allure for me.  So it took him off guard at first when I agreed–he thought I was just messing with him.  But once he realized I was serious he became so excited that later, when I came to my senses, I didn’t have the heart to back out.

To be honest though, deep down I didn’t want to back out.  I’d reached the point where the constant, chronic fear I was living with finally seemed worse than anything that could conceivably happen.  It no longer sounded as bad to me; freezing to death, being impaled on a stray arrow, mauled by a drought-starved bear, trampled by a rutting, bull elk, falling off a cliff, going into hypoglycemic shock from lack of food, burning alive in a forest fire, being struck by lightning, buried in a snowstorm, or captured and toyed with in unspeakable ways by some caricature of a deep-woods crazy. Nothing I imagined anymore could possibly be worse than spending the rest of my life locked in the bedroom cowering under a blanket.  It had become unbearable, losing access to everything I loved drip by drip, the slow suffocation of walls closing in.  The time had come to summon all my fears to sit down in a circle with me–time to either break the back of the depression or die trying–and frankly, I didn’t care anymore which one.

It can be both a devastating and invigorating place to reach, the feeling there’s no longer anything left to lose.

Next week:  Chapter 5 Part II

copyright 2010 Dia Osborn

The Stars We Steer By

LH 95 star forming region of the Large Magellanic Cloud

The results are in from the thirty-seven people who voted in the poll, (hardly representative but enough for a tiny feel), and I’m both surprised and heartened.

But before I launch into that discussion, I wanted to thank everyone who voted, as well as everyone who tried to vote but couldn’t because of technical difficulties.  There were a lot of you latter, I know.  This post got about five times the number of hits as translated into votes so clearly, the glitch some of you reported was a big one.  Bummer.  I really wanted to know what you thought.  I’ve recently been assailed by doubts about the value of what I’m trying to do with this blog and the eventual book, and I was trying to establish whether there was really a need for it or not.

Note to self: Learn more, much more, about conducting a casual poll.

And now to the results.  Taking into consideration that the sampling was minuscule and the line of questioning was leading at best, I was still surprised to find that my suspicions were baseless.  In spite of all the progress medical science has made over the last century, everyone who responded still sees death as the natural conclusion to our biological destiny.  While there were those who thought our age span might be extended beyond 120 years, a few who thought we’d find a cure for aging, and some who thought disease would eventually be eradicated, nobody checked the Live Forever box.   The proponents of Immortalism will undoubtedly be bummed, but it makes the job I’ve undertaken seem more feasible.

For those who didn’t know yet, I have an agenda here.

We all have our particular stars to shoot for and I’m no different.  Mine involves trying to ease some of the unnecessary levels of fear I’ve seen around dying.  I’m not gunning for ALL the fear mind you, because some of it is appropriate and perfectly healthy.  It’s like a couple of people mentioned in their comments; the instinct to survive is in our DNA and, without the fight or flight response, we wouldn’t last long as a species.

No.  What I’d like to target is the unnecessary fear.  The excess.  The bogey man part.  The kind of terror that results from things like lack of education and unrealistic expectations, from misinterpreting symptoms to grossly underestimating our own strength.  I want to tackle the kind of creeping, obsessive fear that arises from focusing on external, technological solutions which we often can’t control, to the exclusion of internal strengths that we can.

That last one was what I was trying to gauge with the poll.  As a society, we’re dedicating our resources and faith to medical science at a rate that’s escalating geometrically, and I wanted to find out just how much faith.  Because if most people are starting to believe deep down that dying is ultimately unnecessary then, honestly, there wouldn’t be much left for me to do here.  The hope of living forever raises an entirely different set of fears about dying that I wouldn’t have a clue how to address.

If that was the case I’d be free to begin a whole new star-hunt.

However, thirty-seven out of thirty-seven people still believe that dying is biologically inevitable and, while it’s not universally representative, it’ll have to do.  I’ll just assume that trying to ease some of the fear around dying is still a relevant and worthwhile goal to pursue after all.

Note to self:  Possible things to talk about in future posts.

1)  Cultivating internal resources like courage, endurance, gratitude, trust, humility, strength, inner dignity, etc., provides the most powerful fall-back position for when technological solutions fail.  (Other options:  Despair.  Rage.  Blame.  Generally falling into the abyss.)

2)  Cultivating the above also dramatically improves the quality of life before dying.

3)  Instead of devoting all our attention to fighting over who’s going to pay for the viral growth of outside, institutional services, we can also look into designing and building closer, committed homes and communities where it’ll be easier to help care for one another.

4)  Before we pour our hearts, souls, and tax dollars into more of the bitter, divisive legislative battles raging, we could first try to weave a constructive, workable meaning for suffering to help us navigate with a little more grace.  (Of course this would require courage, trust, humility, etc., which brings us right back to the practical uses of number one.)

I know there’s a way to die that isn’t as scary as most people think it is.  I’ve seen it.  I witnessed a variety of ways to navigate the process that not only make it less devastating for the person who’s dying, but actually helps buoy and heal those who have to pick up the pieces afterwards and carry on.  I just need to figure out if there’s a practical way to communicate what I learned to anybody else.

That’s my star.

copyright 2011 Dia Osborn

Poll: Do You Think Medical Science Can Someday “Cure” Death?

Update:  There was some confusion about where to find the poll.  Bad post design.  Sorry.  I’ve now moved it up to the top.  Please click on all the answers that seem true to you.

This week, my friends, I’d really like to get your input on something.

The other night, as I was watching the usual parade of age-related drug and medical commercials during the evening news, (the target demographic for network news is pretty unmistakable these days,) I thought I heard a subliminal message running throughout.  If I’m hearing correctly, it’s an oblique, unspoken promise to the general population that goes something like this:

If we (i.e. medical scientific research) can find a cure for aging and disease, then nobody will have to die anymore.

Is it just me, or is there an unconscious (conscious?) expectation being fostered in our public awareness that someday death will be “cured”?

Do you think death is curable?

In order to take a broader pulse, I’ve developed this brief, informal poll.  (Here’s hoping it works.  I’ve never done a poll before.)

If you wouldn’t mind, I’d really appreciate your taking a moment to answer.  In fact, if you wanted to invite anybody else to take this poll, too, well that would be just dandy.  There are various ways to share the link below, or you can always cut and paste the URL yourself.

The more the merrier.

And if you’re as curious as I am to find out if there’s a real paradigm shift taking place (i.e. we’re starting to believe en masse that we don’t have to die) there should be a tab at the bottom of the poll you can click on to see the results so far.

I know the possibilities I’ve provided are pretty limited, so if you have an insight that doesn’t fit in to any of the choices provided, feel free to expand in the comment section.  I’d really like to hear what you think.  This is driving me nuts.

Thanks.

copyright Dia Osborn 2011

Fecal Implants? Seriously?! (Yup.)

rectal bulb syringe

(RECENT UPDATES ARE AT THE BOTTOM OF THE POST.  MOST RECENT UPDATE AS OF 5/2/12.)

I live for this kind of stuff.

Slate online published an article a couple days ago titled The Enema of Your Enemy is Your Friend by Emily P. Walker. It reveals an unusual, frontier-type of treatment for an intestinal infection called Clostridium difficile that’s killed a lot of people over the years, and which 1.3 percent of patients are estimated to contract during a hospital stay.

Death by diarrhea.  Not a fun way to go.

The traditional treatment for C. diff is a course of antibiotics but for the unlucky who fail to respond, fecal implants are another up and coming possibility.  And before you wrinkle your nose and shake your head in disgust please consider that, in the small amount of documented research available so far, the outcomes are surprisingly good.  From the article:

“It’s true there’s been no major clinical trial of fecal transplants, but the procedure appears in the medical literature at least as far back as 1958… Now we’re beginning to see some more extensive studies. Mark Mellow, a gastroenterologist at INTEGRIS Health in Oklahoma City, recently presented a paper showing that 15 out of 16 C. diff patients whom he’d provided with a fecal transplant remained disease-free after five months. Several other papers presented at the meeting showed similar positive effects, and in every case, symptoms disappeared almost immediately after the transplant.”

Evidently, it works because the foreign feces helps to repopulate friendly flora in the infected intestines.  (Want to know the best feces to use?  Borrow it from a person who lives with you.  Their flora and your flora are the most likely to be a good match.)  In a clinical setting the donated matter is first screened for disease and then mixed with a saline solution to the consistency of a “milkshake.”  (The article is not only informative, it’s fun to read.) Then it’s pumped into the colon where it does it’s magic.

But there’s also an alternative:

“And then there’s the do-it-yourself crowd.  All you need is a bottle of saline, a 2-quart enema bag, and one standard kitchen blender. Mike Silverman, a University of Toronto physician who wrote up a guide to homespun fecal transplants for the journal Clinical Gastroenterology and Hepatology, says it’s entirely safe to do the procedure this way, provided that a doctor gets involved at some point to screen the donor sample. He felt he needed to draw up the instructions because administrators at his hospital wouldn’t allow their doctors to perform a procedure that hasn’t been validated in a large, peer-reviewed study.”

But as Ms. Walker points out in the article, these studies are proving hard to come by.  Pharmaceutical companies not only have little reason to shoulder the substantial costs involved (there’s not enough profit potential for them), there’s actually a disincentive; a natural remedy like this would replace an antibiotic treatment.

Gotta love our health care system’s fabulous cast of skewed incentives.

Needless to say, I’m endlessly fascinated when conventional medicine turns off the beaten path to consider the unusual.  If this treatment turns out to be as successful as it looks like it could be, it would place it right up there with the simple elegance of biosurgery; the use of maggots in destroying necrotic tissue in a slow or non-healing wound.

My hope is always that the adversarial stance so often adopted between different healing modalities will eventually soften and reverse.  It sure seems like the more hands we have on deck, the more solutions we’ll find for not only treating illness, but increasing health, thereby enriching everyone’s quality of life.

UPDATE:  October 29, 2011

It looks like this treatment may be starting to get the acceptance (and application) it deserves.  I just found a headline article on msn.com called Sounds gross, works great: Fecal transplants cure nasty C. diff infections citing the benefits and growing use of fecal transplants.  The article mentions a success rate of 90% for the treatment (yowza!) yet says the transplants are still looked at as a “treatment of last resort.”  I wonder how much of that is due to doctor’s skepticism and how much is patient’s resistance?

In any case it’s interesting to note how quickly fecal transplants are gaining traction as a viable treatment.  With C. diff infections on the rise, the availability of a treatment with a 90% success rate is a godsend.

UPDATE:  July 6, 2011

And now, a recent positive write-up in a professional journal!  The journal Pediatrics published an article on June 14, 2011 covering the case of a child who was successfully treated with a fecal implant.

For those researching, here’s an online physician’s resource called HCP Live, with a couple of other potentially valuable links.  Good luck!

UPDATE:  March 24, 2011

Because I’m getting a lot of hits on this post I thought I’d update it whenever new information comes in.  Today, I received a comment from Kathy Suszek who is a nurse case manager “working with a gentleman who just had the fecal implant done, he tells me his results are “wonderful”. Had 1-2 loose bowel movements, in the past few wks, but much improvement.  Just wanted to share news that is positive for a change.  His provider has had 14-out of 14 success stories.”

UPDATE:  May 2, 2012

Here’s a great article titled Fecal Transplants: They Work, The Regulations Don’t published in Wired Magazine, December of 2011.  In it the author talks about a couple of early trial results on fecal transplants as well as some of the regulatory hurdles involved in getting serious studies launched.  The success rates for this procedure so far are absolutely amazing, but it’s difficult for people to find doctors working in institutions that are broad minded enough to allow it.

I did find this video posted by Integris Digestive Health Center in Oklahoma City where they consider administering fecal transplants to those with recurring C. diff.  

copyright 2010 Dia Osborn

Buoyancy, A Curious Japanese Ritual, and Admitting Confusion

IMDb

Today I hurt.  In pursuit of my timid triathlon quest I lifted weights yesterday, so today it’s harder to lift anything else.  And once I finished the round of weights, I went down to the pool to swim laps for the first time in over a decade and made an awkward discovery.  Most people probably already know this but it turns out fat is really buoyant.  I mean really. There are about sixty pounds or so standing in between me and my old fighting weight and, gauging from the way my body responded to the water yesterday, I think most of it is in my butt.  I may as well have had a life-preserver strapped to it.  Or an inflatable boat.  No matter how deep I dove or how hard I kicked to stay down there, my rear-end inevitably led back up to the surface like a drowning person seeking air.  It was embarrassing.  The self-delusion I’ve clung to over the years took a critical (necessary?) hit and now I’m forced to admit there is nothing, nothing, sleek left about my body.

The poor dear.  I owe her big time.

And now on to what I really wanted to talk about in this post.  There was a powerful insight I had while watching the Japanese  film “Departures” a couple of weeks ago but the problem is, I’m still not exactly sure what it was.  (Actually, I feel kind of like a quote I found once in a whole oats forum: The answers we found only served to raise a whole new set of questions.  We’re as confused as ever, but we believe we’re now confused on a higher level and about more important things.) Please bear with me here while I struggle to explain this.  For starters, there are a few things I do know about the insight.  For instance, it was a big one.  It felt like it might explain a lot of what I’ve been trying to communicate about dying in this blog.  It’s also continued to eat at me because I suspect understanding this one insight could go a long way toward easing the excess terror a lot of people feel about dying these days.

But what is it exactly?  Well, to explain that I need to describe three of the scenes that triggered the insight.  But Spoiler Alert:  If you haven’t seen the movie yet, these scenes will give a major part of the plot away.

Ready to go ahead anyway?  Okay.  Here we go.

The first is a scene where the main character, Daigo (who’s taken employment as someone who reverently prepares the bodies of the dead for cremation) meets an old childhood friend on the street.  The friend has his family with him and Daigo stops to greet them.  But the friend gruffly sends his wife and child on up the street without introducing them, telling Daigo that he knows he’s working with the dead and therefore wants nothing to do with him.  He ends the encounter saying something like  “get yourself a decent job” before walking away.

The second scene involves the death of this old friend’s elderly mother.  Daigo is asked to perform the “encoffining” ceremony for her; an exquisite, formalized, Japanese ritual of bathing and dressing the deceased in front of the watching family.  By the time this scene arrives in the movie, we’ve already witnessed the profound and often healing influence this ceremony has on the families, so we’re expectant that something similar is about to happen to Daigo’s friend.

And we’re not disappointed.  True to form, as he watches Daigo not only restore the dignity to his mother’s body that death stripped from it, but also elevate it to an almost transcendent state of beauty, the friend’s perception of  Daigo’s work transforms.  We all watch as the childhood friend finally “gets it.”  He’s moved.  He weeps, and he thanks Daigo for the gift he’s given his whole family.

Then, in the third scene, Daigo visits the recently deceased body of the father who abandoned him in early childhood.  He stands in a strange room gazing down at a body he doesn’t recognize and with which, other than anger, he feels no emotional ties.  Suddenly, two men hurry into the room hauling a cheap coffin.  They set it down, seize the shoulders and feet of the body, and start to heave it into the box.

We’re all shocked.  This time there is no beautiful, reverent ceremony.   No respect for the family standing in observance.  No restoration of dignity to the body or anything else for that matter.  Quite the opposite.  The actions of the two men only deepen the natural horror that always goes with the violent severance of life.  They treat the body as a “thing.”  As so much trash or waste to be collected, dumped, and burned.  Far from providing healing, this callousness threatens to increase Daigo’s trauma.

Needless to say he’s outraged and this heat transforms his wound.  He stops the men mid-transfer, and drives them away.  Then he kneels down beside the body to perform the ceremony of encoffining, and in so doing finally finds the healing for himself that he’s provided for so many other families.

These scenes were aching, beautiful, and real for me.  I recognized the peculiar transformation of healing that can come through deep pain, because I often saw the same thing in my work with hospice.

And…suddenly…I’m realizing I’ve misunderstood what the source of that healing really is.  All this time, I’ve thought it was caused by the power of the dying process itself, but it’s not.  It’s more than that.

Dying generates an enormous, surging wave of energy that sweeps through the lives of everyone involved.  It’s like a tsunami of upheaval, destruction, and change; physically, mentally, emotionally, spiritually, and socially.  The sheer magnitude of the energy involved inevitably wrenches and devastates to some degree, even with a relatively benign death.  The natural, physical violence involved as a body dies dictates that.  Dying as an energy is a lot like nuclear power or the roiling energy of the sun.  It’s an elemental force of nature.

I’ve mistakenly assumed that the positive transformations portrayed in the movie, the kind I often saw in my hospice work, were built into the dying process itself.  But now I’m thinking not so much.  The energy of dying is neutral.  It doesn’t care how we feel about it.  It doesn’t care whether it traumatizes us or not.  It doesn’t care if we face it with courage and respect, or run away from it horrified and screaming.  Healing us is not its job, anymore than it’s the sun’s job to make sure our houses are warm.  The power dying generates has the potential to heal, of course, but it probably won’t unless we learn how to harness  and direct it.

In Departures, Daigo shows us one way to harness it; with respect, willingness, humility, compassion, and tremendous courage.

The movie puts a concrete face on the beauty, dignity, grace, and healing that can accompany dying and death, something that I’ve been trying to describe in this blog for a while.  (With questionable success.)   And the movie does so without romanticizing or hiding the gruesome, gritty realities that are also involved.  There are a couple of graphic scenes (skillfully deployed with humor) which add something critically important.  The truth is that dying and death are primarily energies of destruction.  Yes, they’re still crucial to the world if there’s going to be enough room and resources left for all the new life yet to come, but that fact doesn’t tend to make the graphic nature of it all easier.  It’s important to learn the tools we can use to manage the graphic elements involved, things like humor, reverence, and building a bigger context.

There’s a deep paradox embedded in our nation’s perspective about dying.  On the one hand, our national eyes look at it through a scientific medical paradigm through which we’ve increasingly grown to see dying as a failure and a waste.  Now, I don’t in any way mean to dismiss the profound gifts that medical advances have brought to our lives or suggest that we should ever return to a world without them.  However, it’s important to understand that the lens of technology we’ve adopted has created a growing distortion in our expectations about death.  In attempting to reduce it from a universal force of nature to the level of a technological glitch, we’ve objectified dying in much the same way that the two men in the third scene objectified the body of Daigo’s father.  These days, in both medical research and public awareness, we increasingly see death as a mess and a waste, and we tend to treat it with a corresponding aggressiveness, disrespect, and callousness as we attempt to conquer and eliminate it.

But something else entirely is taking place on the individual level.  While our societal consciousness reels in a kind of perpetual horror of dying, I’ve met so many individuals whose lives have been touched in a beautiful, dignified way by the death of someone they loved, usually because of the help and guidance they received from a hospice or other agency that (in direct opposition to the scientific medical view) perceived dying as an incredibly valuable time of life.  These people I met had been through hell, no question.  But they’d also learned how to see what was happening through eyes of respect.  During their difficult journeys they were allowed and encouraged to unleash the fullest extent of their love, even in the face of unalterable and permanent separation.  To varying degrees, they had each tasted what it was like to rage, to long, to grieve, to laugh, to tremble, to hope, to ache, to collapse, and then to survive and come through a deep, irreparable loss within a circle of respect and safety, holding the hands of others who didn’t minimize, dismiss, or pull back from their experience.

This paradox between a technological perspective and a reverent one is, on a deep level, tearing us apart.  Our scientific determination to conquer death is engaged in a ferocious battle with our deep human desire to die a peaceful one and, even though we know deep down that we can’t have both, we still throw all our considerable resources at the first goal, and then bitterly fight over what policies to set that can guarantee the second.

It’s made us a little schizophrenic.

I don’t pretend to know what the solution to the conflict will be.  That’s something that only time, growth, and group wisdom can reveal.

But I do know what’s helping me climb out of the clash.  In a lot of ways I felt like my job with hospice was similar to Daigo’s, only I did mine with the living.  I bathed and dressed and prepared them, too, with as much reverence and respect as I could muster, and I did my best, minute by minute, hour by hour, and day by day, to restore the people who were dying and the people who loved them to a sense of their own dignity, courage, and strength.   I know it was something I never would have learned how to do without the help of my mentors…the experienced hospice staff who taught me…and I also know that I really want to figure out some way to pass their gift to me downstream.

Which is why I recommend this movie so highly.  Because I think it can help.  If you ever get a chance, give it a look.  Departures.

copyright 2011 Dia Osborn

Life Is Like A Trust Fund

In “Dying” Is Still Alive I talked about the cost of focusing so much on trying to cure a life threatening illness that we risk going straight from being sick to being dead, with no time left for the opportunities that dying offers in between those things.  In the comment section afterwards, Linda of What Comes Next? posed an important question:  When fighting a life threatening illness, is it possible to embrace dying too soon…to forfeit the opportunity to rise above it and live longer? This is a great question and one that a lot of people ask.

What I’d like to do is break it down into two parts.

Part # 1)  Is it possible to embrace dying too soon?

My answer, which probably won’t surprise anyone, is absolutely not.

Personally, I think we should all start embracing dying (i.e. looking at it, accepting it, and using the daily awareness to live as wisely and fully as possible) early on, ideally in childhood.  The opportunities for exposure are rife.  Like the first time we see our father crush a bug, or our mother put a cooked leg of something on our dinner plate, or have a family pet die, or hear about our little friend Emily losing her grandpa.  As I’ve mentioned before, it’s never hard to find dead bodies scattered along the side of pretty much any road in America and, if all else fails, there are the innumerable references to, and reports of, dying and dead on the news twenty-four hours a day.

However, since children learn how to embrace dying from their parents, and since most parents don’t know how to teach it, most of us wind up as adults lacking the skill.  In fact, most parents not only fail to teach how to embrace it, they treat it as something unspeakable and do their best to hide it.  The most common metaphor for dying used in our culture is The Enemy, a horrible, looming foe to fight against tooth and nail, both bitterly and indefinitely.

As a result, most of us don’t learn to embrace dying as the last, natural, grueling-but-luminous stage where, if we’re lucky and blessed, we have the time necessary to successfully wrap up our life.   Instead, we deny it as long as possible which can drastically shorten or, sometimes, even eliminate the opportunity to fulfill our end-of-life tasks.   Most people don’t seem to realize that it takes time, sometimes a lot of it, to wind up our affairs, make our bequests, and absolve and be absolved by those we care about.  To link trembling hands one last, aching, transcendent time and say I love you.  I’ve always loved you.  I will always love you.

As a death averse society, we haven’t fully grasped yet that dying at peace, with no regrets, and with our loved ones prepared for a life without us afterwards, is a necessary and worthy goal.

Instead, most us learn to look at dying as the gruesome, terrifying end of everything.  To run.  Run! Hard and fast, for as long as possible toward escalating medical intervention; drugs, surgeries, and treatment regimes that can not only consume most of the time we have left and create more layers of suffering, but actually shorten our lives as well.

In La Crosse, Wisconsin, where end-of-life discussions are the established, accepted norm, life expectancy is actually one year longer than for the average American population.  And a 2006 study by the NHPCO found that the mean survival rate for patients on hospice was 29 days longer than it was for patients who were not on hospice.

For a person who’s spent their entire life regarding dying as something horrific, it’s a real challenge to switch gears, turn around, and embrace it when it finally comes.  Not impossible mind you, but definitely harder.

Helping people make this switch was one of the major goals we always worked toward in our hospice.  We fought hard to help people make the difficult transition from fighting for life to accepting dying because we saw, consistently, what a profound and healing difference it makes.  There’s more trauma involved when the state of dying is embraced late, or never embraced at all.  There just is.  Sometimes this is unavoidable, as in the case of a swift or sudden death.  But more often in today’s medical system, it happens as a result of focusing entirely on finding a cure without also preparing for dying.

Which brings me to the second part of Linda’s question.

2)  Is it possible to forfeit the opportunity to rise above it and live longer?

While this question initially seems to reduce the situation to its simplest elements, I think it’s actually creating a trap.  To explain, I’d like to use a teaching story.

Imagine you were born with a trust fund, and in this trust fund was a billion dollars. All your life you’ve been able to draw from this fund whenever you wanted, using the money for any old thing your heart desired.  While you learned early on that the trust would eventually wind down and close, everyone was kind of fuzzy about the dates on that part.  So in the end you just kind of forgot about it and started spending.

Then one day your lawyer calls to tell you that the termination clause has been activated.  He’s learned that you’re going to lose access to the funds in about six months.  He knows there’s no way to break the clause entirely, but he thinks that if you fight it, you might be able to win a temporary stay.  Buy some extra time.  The tricky thing is, you have to draw down the money in the trust fund to mount the court battle.

You now have three forces at work:

First, there’s the hope:  You might win extra time and still have some money left in the fund afterward.

Second, there’s the real and measurable cost:  You’ll be diverting money to the fight and depleting the funds you need for everything else in your life.

And third, there’s the risk:  Court costs these days can easily eat up most of the trust.  Even if you eventually win more time, the funds might already be exhausted.

Considering these three things, you really, REALLY need to ask yourself some important questions before you decide on a strategy.  The trick is what are the best questions to ask?  Naturally, you want the ones that will give you the most insight and wisdom, the ones that will be most helpful in guiding you in your choices during the time you have left.  So what are those questions?

Linda’s question, adapted to our metaphor, is one possibility.  If I just accept the clause and forgo taking it to court, will I miss the opportunity to use the trust fund longer? The answer?  Well…yeah. Of course you would.  The answer to that one, just from the standpoint of pure logic, is obvious.  Which initially makes the right choice seem like a no-brainer.  Of course you should fight.  Anything else would be giving up.

However, this way of looking at it is actually misleading.  It makes it sound like, universally, there’s only one possible option that everyone should always make.  But that’s not true.  Why?  Because every person is different; with different needs, different dreams, different circumstances, different ages, different strengths, different fears, and different prospects.  All these things need to figure into the choices that each person makes, so the questions we ask need to include them.  Ideally, they’d run more along these lines:

Okay.  Exactly how much extra time are we talking about fighting for here?  Rough guess, what are the odds of my winning this fight?  Am I really interested in betting the farm on longer, riskier odds?  Just how much money is left in the fund to fight for at this point anyway?  Is there something other than legal fees I really want or need to spend that money on?  What will I lose by mounting a fight?  What’s more important to me; having the funds available to spend in the future, or spending them today on what I love?

And what is perhaps the most important question of all:  How much of the fund should I reserve for what I love, value, and cherish the most, to ensure I have no regrets–that my loved ones will still be okay–when the trust eventually closes?

The metaphor of a trust fund is apt because, in reality, life isn’t something that belongs to us. It’s not like our mothers gave birth and then picked up a receipt at the front desk.  Life has never been ours, something we’re entitled to own and control.  On the contrary, it’s only ever been a miraculous, incomprehensible, immeasurable resource controlled by something else too big to understand.  Life is something that we didn’t earn and don’t even necessarily deserve, but that we nevertheless get to use however we want, for free.

To me, life is exactly like a trust fund…only times a gazillion. It’s our fortune.  Our treasure.  A limitless, jaw-dropping, sphincter-releasing wealth beyond our wildest, freaking dreams.  I’m talking real-life fairy tale here, a winning-the-biggest-lottery-of-all-time kind of luck.  A staggering, incalculable store of riches that’s set up in trust for us when we’re born and that we get to draw on and use for as long as we’re here.

But of course, as with all fairy tales, there is that one small catch:  We only have access for a limited time.  And while the question how much time? is certainly a compelling one, it’s unanswerable.  For me it’s more valuable to ask instead, What is the best and brightest use of whatever time I do have?

The medical mindset at work today tends to glorify the fight to live, and skim over the deep human costs involved in such a fight.  This often leads people to continue fighting in the face of increasingly long odds, instead of devoting their remaining energy to fully living whatever time they have left.  It’s surprisingly easy for the fight itself to take over and become the goal.  That’ why it’s so important to remember that the fight is only worthwhile in so far as the life it seeks to preserve is worth living.  When it begins to consume and destroy that life instead, then it’s time to stop.

We’re living in a transitional age where developing technologies have granted us miraculous gifts.  We’ve gone from having little to no choice at all about how we die to an overwhelming explosion of options and, even though we don’t have any more power to prevent death today than we ever did, we’ve developed an extraordinary, mind-blowing capacity to manage its timing.

However, there’s still a gaping hole that exists between these developing powers and our understanding of how best to apply them.  Subconsciously, we’re wrestling with a lot of confusion.  All the old instincts about dying are alive and well and active, lurking just below the surface.  We’re still firmly in the grip of old memes, superstitions, beliefs, and attitudes about it, only now we’ve added layers of wild (and often unrealistic) expectations born of a new, more sophisticated world.  Our collective understanding and response to dying, developed through tens of thousands of years of helplessness, hasn’t evolved as quickly as our intellectual, technological knowledge, creating turmoil and chaos.  But it’s also opened the door for some amazing exploration and new possibilities in how we want to ultimately embrace and manage the way we die.

We’re living in an exciting, intoxicating age where we’re all medical pioneers, where we all get to explore and experiment in our own lives with how best to apply this new wave of knowledge.  I suspect, as we evolve and mature in our understanding of what dying and death mean in today’s world, we’ll become more skilled in balancing our profound desire to live with a deepened, more authentic acceptance of dying.   We’ll discover new and wonderful ways to navigate, treat, live…and still dance…with chronic and terminal illness.  Ways that, today, we can’t even begin to imagine.

I think the current, explosive growth in medical possibilities offers us a parallel opportunity, both as individuals and societies, to grow and develop at a pace that simply wasn’t possible before.  We now have  the chance for our deepest humanity–our collective courage, generosity, insight, humility, and wisdom–to grow at the same exponential pace as our technology.

Personally, I love it.

copyright 2010 Dia Osborn

The Burden of Miraculous Choices

One of the strangest side effects of my years working with hospice was the collapse of my sense of belonging.  I had no idea beforehand, how much of my identity was tied up with the various beliefs I held and the different groups I identified with because of them.  National, ethnic, familial, political, economic, spiritual, you name it, I had come to define most of who I am by the ideals I held.

But then, as I entered homes filled with beautiful, vulnerable, dying people…who it just so happened believed in a wide variety of  things that were frequently different, even opposite, from my own…I made the unwelcome discovery that many of my ideals were actually fed by lurking, unconscious prejudices that lay, seeping and contaminated, just underneath.

I was naturally horrified.

One of my biggest prejudices was against the medical/industrial complex and especially the pharmaceutical branch.  (Please understand, my admission of a prejudice is not to say there isn’t a problem.  I’m not alone in my concerns about our over-prescription, over-use, and over-reliance on drugs.  A lot of thoughtful people, both in and out of the medical field, are worried about it.)

But for complex reasons, including a couple of personal encounters with disrespectful (and in one case unethical) doctors, I went beyond simple concern into deep prejudice.  I began to think badly of medical, pharmaceutical, and health insurance people as a whole.  I came to question not only their motives but their basic humanity.

I secretly began to suspect they were monsters.

But then one day I had this irresistible urge to work with the dying and as a result, actually entered into the medical/industrial complex as a participating member.  I joined a hospice, took a class, and became a nursing assistant.  I did my clinical hours in a nursing home.  Visited patients in hospitals.  Worked closely with nurses and doctors and even filled prescriptions at pharmacies, delivering them to the people I helped care for.  And lo and behold!  Somewhere along the line, in the gentle, surprising way that grace frequently delivers its gifts, I rediscovered the value, relief, and miracle that modern technological advances have to offer.

I discovered there aren’t really any monsters after all, just an odd amalgamation of deeply caring, deeply flawed human beings.

As a result of this journey, modern medical technology has taken on a slightly different cast for me.  Not so much a cold, uncaring, manipulative, disrespectful power that takes over our bodies and ignores our humanity, but an offering of something extraordinary, a possibility of the truly miraculous.

I had a patient once.  Maggie–dear, beautiful, polio stricken Maggie Full Of Grace–who wrote a little book about her sixty year journey with the disease and it’s after effects.   I read it after she died and in it I found the answer to a question I’d always wondered but never found the courage to ask her.  How did she feel to be one of the last to ever contract polio?  The vaccine was introduced two years later and the disease, for all intents and purposes, was eradicated.  Did she ever feel cheated?  Did she ever think Why me?  Why wasn’t it discovered two years sooner?

I found the answer in her book.  First, she described the terror she and her husband initially experienced in those earliest days, not for her but for their three small children, the fear that they might also contract the virus.  She’d been nursing her five-week old baby at onset so he was particularly exposed.  That description was then followed by this passage:

“One of the greatest blessings I would later thank God for is the presence of the vaccine, the fact that our children and grandchildren will never get polio.”

I started to cry when I read it.  It was as though she was still there whispering to me.  Still trying to answer the secret question, the real question, I so desperately needed to ask her.  She’d been powerless to stave off infection from the polio virus itself, but somehow she’d successfully fought off the bitterness and regret that so often follows in the wake of such trauma.  How?  In the face of decades of the resulting hardship and suffering,  how in the world did she protect her heart from that kind of collapse?

And somehow there the answer was, miraculously written down for me in her book.  Her love for her children and gratitude that they were spared served as her vaccine.   The power of those two emotions filled her heart with a kind of immunity that no bitterness, however real, however justified, could overcome.   It was something I’d always heard but somehow never really understood before, the simple difference between looking at a glass as half full rather than half empty.  Both realities are always true.  Both have an impact that must be absorbed and coped with.  But the choice of which one to cleave to is always ours, which one we’ll ultimately allow to fill our vision and heart.

I’d never understood before, how often I fill my own with emptiness.  No wonder I’ve struggled with so much sadness.

It was the people I met like Maggie Full Of Grace who started anchoring me back into an older place inside myself, turning me into a person far more tolerant and oblivious than I’d been before.  Over time things like politics and religious differences, economic backgrounds and cultural beliefs, all the myriad and ever-multiplying array of opinions that seemed to matter so freaking much beforehand just didn’t anymore.  Over time I became freer and happier and better and more loving…and increasingly confused by the change.

It was like climbing up to the peak of the very highest mountain in the middle of a vast wilderness where I could finally see forever and ever… but then the wind sucked the map out of my hands and blew it away.  The views were spectacular in a way that knocked me to my knees, sure, but how the hell was I ever gonna find my way back out?

(Don’t delete this photo again dammit…it’s my picture!)

How was I supposed to navigate without the instinctive bearings my prejudices gave me?  I’m still, five years later, struggling to figure that one out.

Maggie came forward in time sixty years to instruct me on the brutal, harsh reality of how it really was back then.  Watching her struggle every single day within her twisted, paralyzed body, hearing her stories of those long, painful, uncertain months in the polio hospital, of how many husbands abandoned their wives, how many crippled children were left behind and forgotten, all these things brought that world to life for me.  I finally got it, why the word, polio, used to strike such terror into the hearts of all who heard it.  Why Jonas Salk was such a hero and how the vaccine really was a miracle of deliverance.

Life before penicillin, immunizations, knowledge of basic hygiene, and the vast array of other developments and discoveries we have today was often cruel.  What we were forced to rely on instead back then was Adaptation with all its tools—the human qualities of creativity, determination, strength, patience, fortitude, and grace.  And now, today, we sit at the junction of these two ages, emerging from a period of helpless vulnerability when we were forced to cultivate our deepest, inner humanity just to cope and survive, and entering into an age of blossoming outer powers where we no longer have to simply grit our teeth, accept, and endure.

We’ve discovered a will, an intelligence, and an imagination within ourselves that can generate miracles…and the breakthrough is heady.  It’s created an insatiable hunger within us for more power, more knowledge, more salvation.  We now dream wild and intoxicating dreams of freedom from all disease, all aging, all pain, all suffering.

Even, perhaps, from death.

But I’ve watched a strange and disturbing thing happening as our outer powers increase.  It seems that our inner powers, the long-cultivated wisdom of our deepest humanity, seem to be diminishing as they lay, forgotten and misplaced in the hallways just outside of research labs and insurance offices and fear-filled waiting rooms.  The ancient tools that served us for thousands of years—things like courage, sacrifice, endurance, surrender, the ability to recognize and be grateful for all that we still have—are threatening to atrophy with a current wave of under-use.  And in their place things like fear, anger, blame, grasping, desperation, and bitterness frequently rise instead.

I have hope though.  I don’t think the current trends will last.  I suspect that we’re simply in the first flush of wild discovery and have yet to understand the limits, comprehend the costs, of pure, unbridled dreaming.  After eons of helpless suffering the pendulum is swinging wildly to the other extreme , but pendulums always swing back.   Someday we’ll remember that we can’t just eradicate things like suffering and death because to do so would also eradicate the great arc of wounding and joy that is life.

No.  I think we’ll eventually settle down, find some equilibrium, and begin the practical task of roping in our miracles, tethering and training them, instead of letting them stampede through our lives, trampling the older, extraordinary knowledge we’ve already developed.

Here’s hoping for a divine marriage between the two someday soon.  A day when our modern technology becomes firmly anchored in our ancient humanity, and when our collected wisdom is further deepened by the discoveries and miracles of today.

copyright 2010 Dia Osborn

You’re Not Dying ‘Til We Say You Are

In the last post I mentioned how our society tends to quarantine the dying in unconscious and insidious ways, thereby making them harder to see and harder to reach.  Since then I’ve been thinking about one method  of quarantine in particular that’s surprisingly effective.  It involves who gets to declare whether a person is really dying or not and has evolved out of our current medical paradigm.

In The Hour of our Death, Phillippe Aries, a twentieth century French historian, says that prior to our modern medical age the first person who knew that dying was an imminent event was usually the person who was doing it.  Not so today.  When was the last time you heard anyone announcing that they were dying without a battery of medical tests and a doctor’s validation?

This is because, in today’s world, doctors are the guardians of the portal.  Only they are allowed to officially declare that someone is dying and even then, only after administering exhaustive tests followed by exhaustive treatment regimes that fail to work.  (That’s the scientific methodology for figuring out if we’re dying or not by the way.  If nothing works, then we are.)  This simple mechanism of controlling the diagnosis serves to make the majority of dying people invisible by removing their authority to 1) know that they’re dying in the first place and 2) even if they do realize it, communicate it in a way that anyone else will believe.

It’s really quite brilliant.

This current stage of development springs from our modern desire for tests, certifications, and proof.  If a dying person can’t provide us with these things then we tend not to believe them.  After all, how could they possibly know if they’re dying or not?  They’re not a doctor.  (Unless they are, in which case we’re a little more likely to believe them.  But even then we’re going to need to see the scans.)

Now, there are a number of reasons why this creates a problem.  On the personal level:

1)  It denies our sovereignty over our own body, and

2)  If we know we’re dying and no one believes us, it makes us feel invisible and crazy.

And on a strategic, fiscal level,

3)  It makes a dying diagnosis the most expensive diagnosis that money can buy,

4)  Most doctors are loathe to tell someone they’re dying, so many either postpone doing it until it’s too late for the information to be of any real use, or they never do it at all, which

5)  Is a huge problem because insurance and Medicare won’t pay for hospice care without a doctor’s referral.

But all that being said, there’s still another reason which is the primary one I wanted to explore here:

6) This mechanism of control takes our primal need to deny death and institutionalizes it into the very system that oversees the dying.

Needless to say, this gives our powers of denial quite a boost.  It sets up a bewildering array of hoops to jump through and there’s nothing denial loves more than hoops, because the more complicated it is to face something, the longer we can put it off.

So it’s no longer just anybody who can announce it’s my time anymore.  Only doctors can.  But even then, it’s not just any doctor.  It usually requires a specialist, maybe two or three of them.  But even a specialist can’t pronounce until they’ve done all the tests.  Blood tests, panels, x-rays, scans, ‘oscopys, surgeries, and more.  And they have to administer all the treatments, too.  Then the treatments to treat the side effects of the treatments.  Then the experimental treatments.  And of course all this costs a fortune which sets up hoops of insurance and loans and savings being depleted and assets being used up first.

(Which, come to think of it, is the other way of figuring out whether we’re actually dying or not.  If we run out of money and can’t pay for any more treatments, then we are.  So in some cases, insurance administrators are actually the guardians of the portal.)

It’s odd to me, how in some ways we’ve come to equate dying with treatments.  Are there still treatments left?  Then we’re not dying yet.  No treatments left?  Then we are.  But this is all wrong.  Treatments have nothing to do with dying.  Dying happens independently.  When we’re dying, we’re just dying.  There may be zillions of treatments left still to try but none of them are going to work.  Why?  Because we’re dying. In this case going through all the treatments first is primarily about satisfying the mind: our mind, the minds of our loved ones, the doctor’s mind.  It’s our modern way of answering the question:  Is it my time? If all the treatments fail then the answer is yes.

In any case, what all this hoop-jumping does is enable us to postpone the acknowledgment that yes, I am now finally, definitely, incontrovertibly dying for as long as humanly possible, sometimes far beyond anything that could be considered rationally productive.  In fact, sometimes it can even postpone the diagnosis until after we’ve become terminally unconscious, at which point we never have to face it at all.  And it offers another benefit as well.  It also allows the rest of us to avoid facing our fears about death.  Because as long as we can believe that someone isn’t dying then, in our mind at least, they’re not.  Even if they are.  Poof!  Dying has disappeared and we don’t have to fear it for a little while longer.

But there’s a cost to this denial and it’s a price that every one of us will eventually pay.  As each of us enters our dying time, this kind of institutionally backed denial automatically places us in a kind of perceptual quarantine.

Our society doesn’t want to hear that we’re dying.  They don’t want to know.  Even after the point is reached where we who are dying are ready to accept it, ready to commence the end-of-life tasks required for wrapping things up and saying good-bye, the society around us will still only want to hear the stories about cures.   And because we can’t deliver that story we’ll be marginalized, shrouded, and ignored.  Our laws and social policies will funnel most of the resources to those who are still willing to fight to live, and we and our loved ones will have a far more limited amount of help, if any, available to us.

I’m going to close this post with a quote from an article in the Literature, Arts, and Medicine Database:

In today’s world we encounter “invisible death,” a somewhat paradoxical name because its invisibility allows the savage beast free rein. Death is no longer “tame” because we deny its existence so effectively we no longer develop personal and communal resources to give it meaning. Death’s invisibility enhances its terror; our culture’s loss of spirituality enhances death’s meaninglessness.

copyright 2010 Dia Osborn