People who smoke are not evil.

355px-Mayan_priest_smoking

(Image of a Mayan priest smoking from Wikipedia.)

I’ve been thinking about a different but still dying-related subject lately.

Over the last fifteen years or so I’ve watched with dismay as the denigration of people who smoke escalated into a kind of national past time. I’ve occasionally even heard them described in terms so derogatory that it put me forcibly in mind of parallel language used by hate groups, and this from the mouths of people who sincerely, deeply abhor discrimination and prejudice.

That caliber of conversation can be very seductive and feel so good and right and even funny to those engaging in it, but in reality it’s not terribly helpful to anyone who’s actually trying to quit.  I think we’d all be better off if that part of the discussion took a more constructive direction.

I’d like to mention here that there is no such thing as a smoker.  (Well, there is, but it’s a piece of equipment that dries meat.)  There are human beings who smoke, which are two completely different things that we need to separate in our minds and then deal with accordingly.  It’s perfectly appropriate to condemn tobacco use and the dealers who market and peddle the poison and make fortunes off of the misery they create, as well as the incredible trail of destruction that smoking leaves in its wake.  But it’s misguided and counterproductive to condemn the living, breathing, struggling human beings who have been caught by the addiction.

Here are a few stats from the Division of Periodontology at the University of Minnesota (smoking wreaks havoc on gums, too) that might help explain:

Tobacco is as addictive as heroin (as a mood & behavior altering agent). 

  • Nicotine is:
    • 1000 X more potent than alcohol
    • 10-100 X more potent than barbiturates
    • 5-10 X more potent than cocaine or morphine  

Pressures to relapse are both behaviorally & pharmacologically triggered.

(A pit stop at their website to peruse withdrawal symptoms might also yield interesting fruit in terms of understanding how incredibly hard it can be to stop smoking.)

Please believe me when I tell you that nicotine addiction is a powerful, powerful enemy and it can require an almost superhuman effort to escape from the dingy, coughing, stinking prison it can create in a person’s life. I speak from experience.  In tobacco products, nicotine often behaves like a pusher or a pimp, seductive at first and promising all kinds of good things, then insidious, relentless and, finally, horribly abusive.  Some people can smoke occasionally without getting snared but for the millions of us who can’t, the addiction is dangerous, degrading, and eventually deadly.

After thirty some odd years of failed attempts I was finally able to quit.  I sincerely believe it’s for good this time (nine years now) although I’ve learned not to be complacent because cigarette cravings can spring back to life after years of dormancy with a viciousness that has overwhelmed my defenses more than once.

But I wasn’t able to finally quit because I was surrounded by strangers who were gazing at me with loathing, or whispering snide comments, or making me the butt of cruel and demeaning jokes.  Quite to the contrary in fact.  That kind of treatment was hurtful and humiliating and far from acting as a deterrent it tended to drive me back to the very real and powerful, if costly, relief that nicotine provides.

What did help were the people in my life who saw me as a flawed and smelly but still somehow beautiful human being worth loving in spite of my habit.  Ultimately, I had to enter the trenches and fight my demons alone, numerous times, just like every other addict does.  But the fact that I had people in my corner rooting for me and telling me they believed I was worth fighting for made all the difference in the world in my finally succeeding.

I hope that’s something you’ll consider if you find yourself looking at someone with a cigarette and feeling the urge to flippantly judge or condemn them.  Try and separate the tobacco from the human being if you can and then hate the one and find value in the other.  Of course, set whatever boundaries you need to where the smoke is concerned, but try and do it with respect and encouragement instead of contempt.  I honestly believe that will ultimately be of more benefit to everyone.

Here are some great tips for those who want to support someone they love to quit smoking:

Helping a Smoker Quit: Do’s and Don’t

10 Things Not to Do if You Want Someone to Stop Smoking

And for anyone trying to quit smoking and looking for support here are a couple of places where you might start:

Nicotine Anonymous

Resources for Quitting Smoking (full of hotlines)

Quitnet

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Hope: Options In A World Of Growing Antibiotic Resistance

Hope_in_a_Prison_of_Despair

Hope in a Prison of Despair by Evelyn De Morgan

I’ve been following the rise of antibiotic resistant diseases (along with viral outbreaks and world touring parasites) since about 2005.

I don’t know why I do this exactly, other than being insatiably curious about these tiny, adaptively brilliant, nearly invisible little companions that outnumber us by magnitudes of trillions and wield a level of power that takes my breath away.

BTW, it’s a power for both ill AND good as we’ll see in a bit, so don’t panic yet.

You may or may not have noticed some of the headlines lately, but first the director of the U.S. Centers for Disease Control and now the U.K.’s Chief Medical Officer have come out publicly to announce that we’re heading over the predicted cliff where antibiotic resistant diseases are concerned.

Antibiotics are losing their effectiveness against a disconcerting array of infections now.  Some of those tiny bacterial companions I mentioned earlier?  Well, they’ve been very, very industrious and mutated to the point where antibiotics just aren’t slowing them down like they used to.  A couple have actually become bullet proof where no antibiotic can touch them.

The language in these bureaucratic announcements is eyebrow raising.  There were unusually dramatic words employed like catastrophic and nightmare which, if you don’t follow these things, is kind of the governmental equivalent of tearing hair and screaming from rooftops.

So what does all this mean?  Well, if you’re a bacteria, it means the future’s looking very rosy.  But if you’re human?  Not quite so much.

Picture the world as it looked before the development of penicillin and you start to get an idea of how much our lives have changed since the terror of infections ceased to rule them.  Forget about syphilis, tuberculosis, and pneumonia.  Once upon a time a splinter or scraped knee could turn fatal if they became badly infected.

Of course things won’t return to exactly the way they were back then.  On the good side, antibiotics will continue working to some extent, and on the bad side, we’ve made some of our little bacterial companions a thousand times stronger.  But in any case it’s safe to say that infections are going to be a far bigger issue than they have been for the last seventy years.

Such is the nature of shifts in power.

Naturally, the $64,000,000 question on everyone’s lips is What comes next?  What do we do about all this?  How are we going to treat infections that have achieved semi or complete immunity to antibiotics?

Well, it’s really going to have to be a multi-pronged approach.  Just like there’s no one energy source capable of completely replacing oil, there’s unlikely to be one miracle treatment that can replace antibiotics.

(Although bacteriophages…wonderful little viruses that eat bacteria…may finally get a chance to come into their own. But more on that in a minute.)

First, a couple of other possible prongs off the top of my head:

CIRCLING THE WAGONS

Trying to prolong effectiveness for the antibiotics that do still work.

This seems to be the main focus of our beloved bureaucracies.  It’s kind of a close-the-barn-doors-after-the-horses-are-gone approach but still vitally important and necessary to buy time.  It involves taking dramatic action to try and slow the spread of antibiotic resistant diseases, curb widespread antibiotic abuses, and encourage new antibiotic research.  Of course here in the U.S., any such policy that’s actually been approved hasn’t been funded, (ahem…cough, cough)  but I guess we deserve that. Our politicians’ divide simply reflects our own.

In any case, we’re effectively leaderless for the time being which is why We The People need to start harnessing some of our famed independence and creativity.  Now would be a good time to energetically explore other alternatives in individual, grassroots, and entrepreneurial ways, the leader of which has to be:

PREVENTION

I would like to stick my neck out here and make a few predictions.

1)  We’ll see a renewed love affair with stricter hygiene in clinical settings.

Remember when nuns ran the hospitals, how squeaky clean everything was?  The metal was shiny, floors were knee-scrubbed, sheets were bleached and ironed, and anyone who didn’t wash their hands had them struck hard and repeatedly with rulers?  I predict our tolerance for rulers will return.

2)  We’ll all learn the correct way to wash our hands.

Soap will once more be king.  We’ll not only start using it every time, we’ll use it liberally and scrub up to the wrists.  No more just swiping one’s fingertips under the dribble and then touching every last contaminated surface on our way out the door.  (Or worse, not washing one’s hands at all. I predict that people who don’t wash their hands thoroughly will be the future equivalent of 17th century lepers.)

3)  We’ll start rethinking just how necessary any surgery or procedure really is.

Without antibiotics to back it up, reluctance to cut ourselves open and stick foreign medical objects inside will skyrocket.  I predict fewer boob jobs and face lifts, cesarean sections and knee replacements, as well as a lot more soul searching and research before patients agree to things like stents, bypass surgeries, spinal fusions, etc.  It’s estimated that 30% of American healthcare costs are spent on overtreatment. I imagine the risk of fatal bacterial infections could cut into that.

And then there should also come a rising openness to:

OTHER ALTERNATIVE TREATMENT POSSIBILITIES LIKE:

1)  Maggot debridement therapy.

Living, disinfected maggots eat mostly dead tissue and, wisely employed, can help clean up a chronic or infected wound in the niftiest of ways.  This method fell out of widespread medical use with the advent of penicillin in the 1940’s but it’s recently been making a comeback.  It’s currently only used on a limited scale because most people think maggots are gross, but I predict that dying from an infected wound will eventually be viewed as even grosser.

2) Fecal implants. (The use of bacterial white hats against bacterial black hats.)

With success rates reportedly as high as 60-80% against drug resistant C. difficile the use of fecal transplants is already swiftly rising.  (The good bacteria in the transplanted healthy feces repopulates the compromised intestinal tract driving out bad bacteria.)  There are also early indications that fecal implants may be of benefit for a variety of other serious gastrointestinal complaints and, if so, their value will explode.  I predict that Big Pharma will double down on trying to develop and patent some kind of poop pill.

3)  Bacteriophage therapy.  (The little viruses that could.)

Every bacteria has a hungry little virus or bacteriophage…phage to their friends…that will gobble that specific bacteria right up.  (These little guys are viral white hats to be distinguished from viral black hats like flu and cold viruses, etc.)

Bacteriophage therapy is the science of matching the right virus to the right bacterial infection and then turning a bunch of them loose to have their way.  Pioneered mostly in Georgia before the fall of the U.S.S.R. the therapy was gaining momentum before the advent of penicillin.  (See a trend?  Penicillin accidentally killed more than just bacteria.)  A handful of dedicated Georgian doctors kept the therapy alive through the decades (a great story btw…these guys are fucking heroes) and currently have the most impressive stockpile of therapeutic viruses around, including a happy little phage for MRSA. As I write this some of our own venture capitalists are working furiously to get the therapy through regulatory hurdles right here in the States.

I predict that professional and public interest will continue to rise in other alternative therapies like these that were previously viewed as too weird or gross or complicated to consider.

And on the individual level there’s already a lot of enthusiasm and interest in possible infection control alternatives coming from:

4) Old home remedies and

5) Traditional medicine from other cultures

But those are a whole other blog post and I’ve already gone on for way too long here.

I guess what I’m mainly trying to say is that, while the dwindling power of antibiotics signals the end of an admittedly halcyon age in medicine, it’s by no means the end of the world.  We’ve been battling infections since the dawn of humanity so of course there are other options (a couple of which look like they may be superior to antibiotics for specific infections as in the case of fecal implants for C. diff.)  And there are plenty more options still to be explored.

The transition between medical ages won’t be easy of course.  We’ve become dependent on antibiotics in a way that makes us pretty vulnerable to their loss. I’m not trying to minimize the real and looming threat to public health that we face.

But neither do I want to climb up on the rooftop to join in screaming and tearing my hair.  While grave warnings are absolutely necessary in the current situation, there are other people far better equipped than I am who are already covering that job.

What I’d like to do is try and introduce some hope to the conversation to keep things grounded.  I remember my initial response to all this when I first learned about it some years back was that of a deer frozen in the headlight of an approaching train. It took me a while to calm down and figure out that I didn’t have to just stand there and get hit.

That’s when I started my research and, over time, the more I’ve learned the more hope for the future I’ve felt, so I thought I’d share a couple tidbits here in case it might do something like that for you.  A little hope can works wonders with a bad case of paralysis.

copyright Dia Osborn 2013

p.s. These are all articles hyperlinked in the above text.  Just thought I’m stick them here again for easier reference.

The Rise of Antibiotic-Resistant Infections

‘We Have a Limited Window of Opportunity’: CDC Warns of Resistance ‘Nightmare’

‘Catastrophic Threat’: UK Government Calls Antibiotic Resistance a ‘Ticking Time Bomb’

Are you ready for a world without antibiotics?

How to wash our hands

Phage Biology and Phage Therapy

Hospice Patients Declared Business Assets By National Hospice Chain

A national, for-profit hospice chain has just sent its lawyers into court to fight over who gets the patients of a non-profit hospice that’s going bankrupt.

In their filing, Gentiva Health Services Inc. objects to the plans the failing San Diego Hospice has made to transition all willing patients to another local provider in a way that can keep patients, some existing employees, and hospice facilities together as much as possible, thereby causing the least disruption for those dying in their care.

Instead, they want the bankruptcy judge to break up the parts and, in essence, sell off the patients (referred to as the “business” in legalese) separately from the real estate. They’ve made a $1 million bid for the “business” and their filing language basically reduces these 450 rare, luminous, and achingly vulnerable human beings to the status of “valuable assets.”

This is a hospice.  Referring coldly and deliberately to dying people as so much business property. You’d think that was bad enough. It’s not.

They did it in open court.  A public forum with media coverage.  They either didn’t realize or didn’t care how these patients might feel to read a news article and hear themselves described in such demeaning and dehumanizing terms.

From the article Creditors decry Scripps hospice deal:

Gentiva Health Services Inc., the Atlanta-based company that made the $1 million offer, objects…saying that doing so amounts to handing over the hospice’s business for free, a move that would not maximize value for creditors who want to get paid.

In court papers, Gentiva states that San Diego Hospice’s “relationship with its 450 patients”** is a “valuable asset” of its estate.

(**see note below)

“Gentiva is ready, willing and able to pay Debtor the sum of $1 million for an orderly transition of the hospice business,” the filing states.

How in the world can people who run a hospice talk about dying people like that?

Look, I think we all understand that there’s a business dimension to hospice care.  Nobody can keep the doors open for long if they’re not financially responsible enough to obey the laws and pay their bills.

But that should never be construed to mean that profit can be shamelessly embraced as the bottom line like this. The mission of the hospice movement has always been to serve the dying, not monetize them. Whoever doesn’t understand that difference really shouldn’t be working in the field.

** Obviously, no one can legally buy, sell, or award patients themselves to any hospice company.  Theoretically, patients are always free to choose whomever they want, including the freedom to change hospices at any time, for any reason.  Any of these 450 people, if they so chose, could go back to the drawing board, start the process all over again, and interview as many hospices as they wanted.

Theoretically.

In reality though, that almost never happens.  The vast majority of patients never interview hospices at all.  Neither do they themselves choose one.  They’re almost always referred to the specific hospice favored by their personal doctor or the hospital they’re using and then they stay with that hospice for the duration of their life.  

Furthermore, as a patient’s condition deteriorates and they get closer to death, the risks of disruption of care associated with a change in hospice provider rise geometrically and it usually becomes unwise to change, even if they still had the energy to do so.  

So even though theoretically these 450 patients get to choose whichever hospice they’d like next, realistically speaking almost all of them will go to whichever one their records are legally transferred to.  They’ll probably be informed in some obscure way that they don’t HAVE to go with that hospice, but they either won’t understand or they won’t care.  They’ll be far too overwhelmed with the daily tasks of dying to deal with it and they’ll just want to know who’s going to take care of them next.

When Gentiva says it wants to buy “San Diego Hospice’s relationship with it’s 450 patients”, what they’re saying is they want to buy access to patient records, contact information, and most importantly, patients’ expectations that Gentiva will be the hospice assuming their care going forward.

So even though theoretically dying people can’t actually be bought and sold, for all practical purposes they most certainly can.

copyright Dia Osborn 2013

Could Fecal Implants Be A Cure All?

Fecal bacteria at 10,000x magnification.

(Pretty cool, eh?)

One of the most popular posts on this blog over time has turned out to be, of all things, Fecal Implants? Seriously?! (Yup.)  When I first read about the treatment almost two years ago now, frankly, I thought it was a joke.  But it quickly became apparent that, for a growing number of people suffering or dying from Clostridium difficile colitis…a spreading epidemic in hospitals and nursing homes…fecal implant treatments can often be more of a miracle than a punchline.

Well, buckle your seat belts again folks because it looks like not only do fecal implants provide an effective treatment for C. diff, they may also provide some measure of relief for a host of other gut-related illnesses.  In an Australian article from The Sydney Morning Herald this morningMore Than A Gut Feeling, Sydney gastroenterologist Professor Tom Borody is quoted.

”But there’s also some evidence that other conditions, including ulcerative colitis, chronic severe diarrhoea and IBS (irritable bowel syndrome) can be improved with FMT,” says Borody, who uses the technique in his  practice and believes we need more research to explore its potential.

The article talks about the growing awareness in medical circles that the legions of bacteria living in our guts, when knocked out of balance by things like sanitized environments, bad diets, and antibiotic use “may contribute to hard-to-treat problems such as allergies, autoimmune disease, irritable bowel syndrome, inflammatory bowel disease and even obesity and diabetes.”

(Evidently, a recent study by Dutch scientists shows some promise that transplanting gut flora from a healthy gut to a compromised one may improve insulin resistance.)

The wheels of research are finally starting to roll on this whole idea, which is absolutely fabulous.  I can’t help but wonder though when the far bigger wheels of industry will wake up and start moving in.  How-oh-how will the pharmaceutical companies and hospitals wind up packaging this one?  Poo packets?

Ideas anyone?

Actually, the formal name used for fecal transplant is Fecal (faecalmicrobiota transplantation (FMT) or stool transplant.  Which, when I climb out of my eight-year old self, actually seems more respectful to those who need help but don’t want to wind up as a punchline in someone else’s joke.  So from now on, FMT it is.

copyright Dia Osborn 2012

I’ll have some judgement with that sandwich, please.

Yum…

The hubster and I stopped off at Subway on the way home from our Weight Watcher’s meeting last night and, as usual, we ordered our six inch, whole wheat, chicken/turkey breast sandwiches…without the cheese.

The woman serving us did not approve.  Clearly.  She ignored our first request to leave it off, instead focused on cutting and spreading the bread before her.  Then she looked up brightly and asked, “What kind of cheese would you like?”

“No cheese!” we answered in chorus.

She stared at us for a moment, the answer still failing to register.

“You don’t want any cheese?”  Her tone was dubious, as if she hadn’t heard us correctly.

“No.  No cheese,” we reassured her, smiling.

She just stood there staring for another second as the full weight of realization pierced some thick, cheese-adoring cloud in her mind and then, before our wondering eyes, she took a deep breath…eyes widening and rolling back, lips curling a little in contempt…before finally shrugging off the utter stupidity of such a request.  She slid our sandwiches past the cheese tubs in disgust, leaving them to wait their turn in the vegetable queue, then turned to wait on the people behind us without another word.

Ah…the power of cheese.  I’m pretty sure this woman loves it.  A lot.  I’m equally sure that she had no idea what her body language was saying.  Frankly, it was like watching a small child who hasn’t yet learned the intricacies of polite diplomacy; her response was spontaneous, unconscious, full bodied, and 100% honest.

My apologies, ma’am.  Truly, we meant no offense.  We really love cheese, too, it’s just that we’re tired of being fat.

copyright Dia Osborn 2012

The Fisher King Goes Fishing

A friend of mine was once a vital, physically dynamic. backpacking, canoeing, outdoors enthusiast and passionate, social worker powerhouse.  Then she contracted West Nile virus during one of its earliest appearances in the West, collapsed overnight, and almost died from the severe neurological complications.  It was sobering, how a tiny virus can take down a strapping, healthy, wildly intelligent woman in her prime like that.  Somehow I had thought that only the young, old, and already compromised were vulnerable.

Fortunately, she survived and has been industriously working to rebuild a new life out of the ashes of devastating illness.  One of the biggest challenges has been trying to get to know who she is now as a result of all the neurological damage that took place.   Her mind is still as keen, curious, and active as ever, but tends to quickly overload and go smoky with any kind of strain.  And while she still loves the outdoors and continues to camp and hike a little, she walks a razors edge in terms of how much physical exertion she can pursue before her brain short circuits from the flood of brain chemicals released by fatigue and stress.

For a woman who largely defined herself by her independence, extraordinary mental acuity, and physical dynamism, the loss of self she’s experienced through illness has been profound and the continuing effort to redefine herself, grueling.  But she does it anyway…and inspires me  in the process.

We used to talk a lot about how hard it is to let go of who you once were, then try to rebuild a new life according to this other, lesser version you’ve turned into.  (At least that’s what it feels like in the beginning.)  I experienced something similar during my rapid descent into a long and severe depressive episode twenty years ago, an illness that effectively blew my old life to smithereens.  Like most people in our situation I, too, spent the first few years trying to first recover, then return to the old life I’d known.  It was only after it grew apparent that could never happen that I finally got on with the job of crafting a new life and a new identity to go along with it.

Any kind of major illness or injury can create this cycle of course, but there was a unique challenge we both faced in that we still looked the same from the outside.  All of our injuries are invisible at first glance, which makes our inability to perform certain, standard tasks very confusing for others.  And when we frequently failed to meet the seemingly normal, reasonable expectations of people it wound up creating friction in our relationships with them, a fact that then made it even harder to figure out and accept who we had become.

But time is a great healer and has been slowly revealing that we didn’t actually become lesser people after all, just different ones.  Our identities have changed substantially–who we are and what we can do in relation to the world around us–but it turns out our essential selves haven’t really changed at all.  We still love the same things we’ve always loved, with the same depth.  We still strive to give, serve, behave, and belong in a way that nourishes the greater world.  We’re still just as committed to the happiness and welfare of our children and husbands, doing whatever we can to support them.  And we continue to try and pass along the little tidbits of light, inspiration, and meaning we uncover while sorting through the various piles of debris that now litter our lives.

Today, she sent me the following three minute video and it reminded me again of what an extraordinary gift and accomplishment it is to survive in this world at all.  Its many and formidable hardships aside, life is still pretty magnificent and I do so love getting to participate in it, for however long it lasts.

This is footage of an osprey fishing from the BBC archives.  First sequence: he catches half a dozen fish in one strike.  Second sequence: he dives underwater and plunges talons into a flat fish resting on the bottom.  Third sequence: he captures a huge fish that looks as if it weighs more than he does.  (How they get this kind of footage is beyond me but they do.  Pretty brilliant.)

copyright Dia Osborn 2012

Part IX: Out Of Town And Back Again (With Advance Directives In Tow)

(Continued from Part VIII: Advance Directives: Dying Inside Our Big, Hairy Healthcare System)

The hubster and I just spent five glorious day up in the Sawtooth Mountains.

Snowshoeing.  With heavy packs.  Uphill.  Both ways.

Kidding.

It sure seemed like it though.  The snowshoe into the family cabin at the beginning of any trip is always a bitch and this was no exception–a two mile trek from the highway to the cabin, uphill with fully loaded packs, after a four and a half hour drive to get there. The bad news was that the trail wasn’t groomed like we were expecting so Dane the Mangy Rescue Mutt (with bad knee and brace) started really struggling in the deeper powder.  (He made it though, and we’re more confident about his knee now than we have been in a while.)

The good news was that we got a late start leaving home so we didn’t actually strap the snowshoes on and start up the hill until about 8:00 pm.  It was already dark and the stars that night…the stars my friends…were outrageous.  It was one of the clearest nights we’ve ever seen and that’s saying a lot.  We rarely use flashlights because 1) you really don’t need them once your eyes adjust and 2) the electric light is so bright it dims the night sky.

As you may have heard, there was a spectacular crescent Moon/Venus/Jupiter conjunction going on last weekend and, sure enough, that trinity was hanging just over the silhouette of snow capped mountains as we got started.   However, the moon set after only twenty minutes so we had to content ourselves with a radiant swathe of Milky Way arcing over our heads from horizon to horizon while thousands of other constellations and stars filled the rest of the sky bowl curving down to the ground on either side of it.  (We made do.)  Meanwhile, the snow reflected all that diffuse light back into the air so that after a while it felt almost like we were trudging through a softly glowing snow globe.  I couldn’t get enough of it.  I just couldn’t.  I’m sure my face would have gotten frostbite from staring up through the bitter wind for almost two hours, except that my skin was too hot to freeze.  The heavy exertion was making me huff and puff and sweat like a pig.  (The hubster loved the stars too but was more preoccupied with trying to recall what were the exact symptoms of a heart attack.)

(Photo courtesy of Steve Jurvetson)

We’re getting older.  There’s no denying it.  And we’re not sure how many more times we’ll get to have these kinds of adventures.  Physical limits are getting harder to ignore.  But so far we’ve pushed on anyway because when you think about it, there are far worse ways to die than collapsing cradled in the wild beauty of high mountains while gazing up into pure, celestial wonder for the last time.

But not until we’ve finished our advance directives of course.

We packed these documents in along with everything else and spent one of our days at the cabin, pens in hand with a snowstorm raging outside, finally filling the things out.  It was surprisingly emotional.  We found it was one thing to sit and diligently read through them over the course of a few weekends, and something else entirely to actually write in our various notations, initial the desired boxes, and sign on the dotted line with each other as witnesses.

Everything suddenly got very final and real, and I kept hearing a heavy door swing shut with a key turning in the lock.  At first I struggled with the feeling that, by signing the thing, I was somehow giving up all my rights and instinctively, I started backing away and questioning the wisdom of the whole project.  I was surprised at how powerful…how primal…the wave of fear was.

But then I remembered something we’d read earlier, that if worst ever comes to worst and I’m finally lying unconscious and helpless and vulnerable somewhere, Somebody is going to step in and start making decisions for me. Whether I’ve filled out an advance directive or not.  Whether I’ve picked them to be the person or not.  Whether they know what I want or not.  And I suddenly got it…on a deep, gut level…that my advance directive is not the thing that will strip me of control and make me silent and helpless, it’s the thing that will help protect me in case I ever am.

That helped my resolve firm again and I was able to continue.

The hubster told me later that the fear he faced arose from a sudden and overwhelming realization that he will, absolutely, someday just cease to exist.  Poof.  Evidently, it was a huge moment for him but I never would have guessed it.  He didn’t look like he was sitting there reeling from the blinding, existential awareness of total, inescapable, physical annihilation to come.  From the outside he just looked absorbed.  Studying the paper in his hands, reading glasses perched on the end of his nose.  It’s not that he was trying to hide his fear from me, that’s just the way he is.  His courage is so unconscious most of the time that he usually doesn’t even realize that’s what’s going on.

We read and scribbled and talked about things for hours.  Sometimes we laughed, I cried some, but mostly we took turns trying to explain what we were afraid of, what we longed for, and how much we loved.  The process flushed out things that had been hidden and dormant for a long time.  Tenuous hopes and secret dreads, things to be examined, cradled in tender hands, and then placed into each others’ keeping in a final gesture of deep trust.

I’ve been really surprised throughout this whole process at the huge relationship component involved in filling out these forms.  Maybe because it was also a research project for me and we took so much time with it, maybe because we did it together as partners, I don’t really know but I tell you, it’s added a whole new level of meaning to Till death do us part. Overall it’s been a healing journey full of deepening intimacy for the hubster and I.  We’ve shared things we didn’t know we hadn’t shared, and revealed things we didn’t even know ourselves until now.

I guess if there was any advice I could give out of everything we’ve learned so far it would be this:

Do your advance directives together.  Find someone else who hasn’t done their’s yet, or who hasn’t looked at it in a long time if they have, and hold hands as you walk through it.  The person you pick doesn’t have to be the same person who will be your medical proxy.  (Although, if experience is any guide, you may want them to be by the time you’re done.)  And it doesn’t have to be only one other person either.  It could be a group…if you could find that many people brave enough.  I strongly suspect that this is one area of life where the maxim There’s strength in numbers holds especially true.  If you can possibly help it, don’t try to take this journey alone.

And take your time with it.  Break the process down over a few days or weeks.  If you let yourself sit with the questions for a while, you may be surprised by some of the answers that come up.  I know we were.

Y’know, it’s kind of funny.  In walking through our advance directives, it almost felt like an opportunity to practice for the real thing…for dying…from a safe distance. Emotionally speaking I mean.  In our imaginations the hubster and I got to slip on the experience of profound vulnerability and dependence that goes with dying temporarily, while we’re still healthy and vital and strong.  It was scary in some ways, but far less so than what I’d imagine it would be like facing it for the very first time in extremis.

And we got the chance to start honing a couple of the emotional skills that are essential to have during dying…things like the ability to surrender to the inevitable, to be openly vulnerable and reveal our needs to one another, to gratefully accept the help that’s offered and to be dependent gracefully.  Things that, in our culture anyway, we tend to think of as weaknesses or failings, and yet they’re not.  Those are things that actually require tremendous courage and strength.  I didn’t realize how much before.  To openly accept the willingness of another human being to step up and care for us isn’t easy, and accepting it with dignity is rare.  (Especially for somebody as controlling as I am.)  And yet the hubster confided a couple days ago that, during this whole process, he’s felt increasingly overwhelmed and touched by the depth of my trust.  Our willingness to open up and be vulnerable with each other turned out to be, not a burden, but a gift.

So anyway, these are just a couple of the things we discovered while filling out our advance directives.  It’s been a beautiful, frightening, surprising, hard, uplifting, sorrowful, strengthening, sobering, illuminating and profoundly intimate journey for us both.

And it’s still not over!  Next, we’ve set up an evening to meet with the people whom we’ve selected as our alternative medical proxies, to get their consent and share our advance directives with them. Then we need to get the forms notarized, witnessed, copied, distributed and filed. (Note: Because Idaho’s laws place unusually high hurdles to a simple, low intervention dying process, we’re taking precautionary legal steps with our advance directives that wouldn’t be necessary in most other states.  It’s extra insurance against something that probably won’t happen but still…better safe than sorry.)

And then, after we get ours taken care of, I’ve got the kids in my sights for theirs.

To wind this up, here are a series of photographs taken of some icicles hanging outside the cabin window during our recent stay.  The changes they went through over the days we were there feel similar to the changes the hubster and I have gone through on this whole journey with advance directives.

Stage One:  Glowing and happy from the previous night’s starlit adventure.  Delicate, sparkly and naive:

Stage 2.  Advance Directives Day–blasted by the elements, bewildered, and storm bent.  Not so sparkly anymore, but still…multiplying and stronger:

 Stage 3.  Skies are clearing, brunt of the work is done.  The amount of growth that happened during the storm is kind of surprising.  Thicker, longer, and a lot more:

Stage 4.  Older, calmer, wiser, stronger.  Not so much sparkling as glowing. We’re a lot more confident now that we can weather the storm. 

copyright Dia Osborn 2012

Part VIII: Advance Directives: Dying Inside Our Big, Hairy Healthcare System

(Continued from Part VII: Advance Directives: Ours.)

Giants and Freia by Arthur Rackham

Turns out there’s a huge, third party squatting in the room with us, as we wade through our advance directives.  It’s our healthcare system.  We didn’t realize until now what a disproportionate influence it wields on our choices about dying and I’m struggling with some real sadness about it.

We discovered that the choices we’re making today are different than the ones we’d be making if we were either very wealthy or had access to universal health care.  

The unsettling truth is that we’re both opting to die a little earlier for reasons of cost and care burdens.  In our current healthcare system, dying could cost so much for medical intervention and help with day-to-day care, that it could easily leave whichever of us was left destitute and/or with broken health.  It’s happening every day to people just like us…middle class with decent insurance (I saw a couple of tragic examples when I worked with hospice)…and the hubster and I simply refuse to do that to one another.

I had a very hard moment the other night when I suddenly realized I wouldn’t mind so much, lying in bed for months or maybe even years, slowly declining while looking out the window at my beautiful garden, as long as I could still write and visit, study and learn, meditate and muse.  It surprised me.  I’d always thought if I couldn’t hike, escape to the mountains, garden and swim anymore, that I’d be done.  I had no idea that I could still be happy without those things…if only the burden of care was spread across the shoulders of enough people to protect them all and care for me well.  If only we were wealthy and could afford to hire them.  If only our healthcare system was universal…and actually helped with home care to begin with (which it doesn’t.)

For the first time I realized I’m not so much afraid of being disabled as I am of destroying the people I love with the burdens of my care, or of being cared for negligently in an institution somewhere (I saw too many tragic examples of this), and I experienced an unexpected and poignant wave of love and deep longing for my life.

On the one hand, I’m irrationally wishing we were born in Canada, or England, or Cuba instead…some country with universal healthcare that cares about all its people equally.

On the other hand, I say irrationally because I know that if I turned Fate loose for a do-over like that, we might just as easily have been born in Bangladesh or Somalia.  Some other country where dying can happen even faster.

I suppose there’s no useful purpose to be had in bemoaning destiny.  The hubster and I were born in this country, we’ve lived here all our lives, and this is where we’ll die.  And to tell you the truth, we don’t really want to die in another country with better healthcare anyway, even if dying here could come earlier and suck more.  We’ve loved our lives here.  This is our home and no country is perfect…a corrupted healthcare system just happens to be our particular Achilles heel.

So yes, all things considered, it’ll be okay if we wind up dying a little earlier here than we would if we were living in an ideal world.  I guess comparing our situation to perfection isn’t the best idea.

(Next the conclusion: Part IX: Out of Town And Back Again (With Advance Directives In Tow)

copyright Dia Osborn 2011

Part VI: Advance Directives: Mine

(Continued from Part V: Advance Directives: Best To Wish Carefully With A Genie)

In this post I wanted to share a smattering of specific thoughts and choices coming up for me as I fill out my own advance directive.  I wanted to do this just in case 1) someone might benefit from an example, and 2) anyone reading this may somehow, someday be involved in my care.

Just kidding.

(Not really.)

But before I start down that road I want to remind everyone that whatever I say here is a personal thing.  It’s a reflection of me and what I’d like to see happen with my care.  It’s not what I think anybody else should do.

When I was working with hospice my first job in any home was to find out what the people who lived there valued, believed in, stood for, and loved…and then work to support them from that foundation.  I did this because the dying journey is pretty turbulent and, for the most part, people need to harness the emotional and spiritual strength they’ve already established, not try and develop something new.  It’s almost always a bad idea to change boats in the middle of rough water.

Jared Alexander on Hazard Creek in Idaho

Any boat is better than being dumped out and beaten against the rocks for the duration of the journey.  That’s why I always tried, as best I could, to hang my own beliefs and personal preferences on a hook outside the door.

This post is only about the things hanging on my hook.

And now, specifics.

Here’s one of the most valuable directions we’ve come across so far:  Fill this thing out based on what choices we’d want made for us right now.  I’ve always thought of an advance directive as something that would come into play…oh…years and years from now.  Like when I’m eighty-three and dying of skin cancer from all the second-degree sunburns I sustained during my haole childhood years in Hawaii, for instance.

But no.  Turns out I need to think more immediately.  Like for the next five years (after which I’ll review and update my directive for the following five years, and so on.) Which leaves me facing the question:  If my life was threatened right now, at fifty-three years old, would I want more life sustaining treatment than I would want at a terminally ill eighty-three?  In other words, do I want more aggressive medical intervention?  Will I accept more risk?

I suspect the majority of people would say yes at my age, however for me it’s a little more complicated.  Because I’ve already been fighting the good fight to survive depression for two decades, my troops are on the depleted side and I’m a little battle-weary.  My basic will to live has taken a considerable beating and I don’t have the reserves I once did.   Just the idea of having to mount yet another massive resistance in a brand new war is exhausting.

It’s not that I want to die.  I really don’t.  I haven’t been in that phase of the illness for a long, long time now.   But depression years are like dog years…you live more of them in the same period of time…so fifty-three years probably seems longer to me than it would to the average, healthy person my age.  To me, I’ve already lived a really long, great, adventurous life.  Everything from here is just icing on the cake.

So what does this mean?  Well, as of today (of course things can always change which is why I’ll continue to review and update this thing regularly) but as of today, if I was mortally injured or ill and teetering on the brink of infinity, and if a possible recovery was going to mean a long, hard slog just to get back to a state of health equal to or less than what I have right now, then I’d rather take a pass on any life sustaining measures.

Please kiss me and let me go, my darlings.

Of course I’m not sure if the medical personnel involved would either agree or cooperate with that at my age…at least right away.  In fact, I’m pretty sure that in an emergency situation I’d still wind up on life support temporarily.  But then that’s exactly why I’m filling out this document right?  So that the hubster and/or the kids would be able to explain to them first, that I’m completely sincere about not wanting to be “saved no matter what,” and second, why I’m sincere, and that way eventually…gently and with everyone on board…they could remove me from life support.

Like I said, this stuff winds up being totally unique for each person doing it.  I suppose the main dictum for filling out an advance directive is, Filler Outer: Know Thyself.

A couple of other scale-tippers I discovered so far concern the issues of being a burden and/or a catastrophic financial cost.  I saw some tragic examples in hospice of how the drawn-out dying process of one spouse can not only bankrupt the surviving other, it can cripple their bodies and/or minds as well.  Occasionally, that’s just the luck of the draw and in those cases…oh well.  I can always stop eating if I feel that strongly about it (and can still think.)  But at other times it happens because of medical intervention and in that case…I don’t want to do that to him.  I DO NOT want to.  It would suck all the meaning and happiness right out of any additional life I gained if it stripped or destroyed the hubster in the process.

At this point I should mention that the advance directives we’re working with don’t offer assisted suicide as an option.  They can’t.  It’s not legal here in Idaho.  (I wonder if advance directives in Oregon and Washington include something along those lines?)  Locally, we’re only talking abut whether we want to accept or refuse “life-sustaining treatment” in extremis (from CPR to major surgeries to artificial nutrition and hydration to kidney dialysis and breathing machines…all of which can be big contributors to the election campaign of financial catastrophe BTW.)  So…no.  Not really.  Thank you.

Pass.

So, these are just a couple of examples of what we’re considering as we move through the documents.  It’s a lot more than just checking off box #1, #2, or #3.  And while I realize it might sounds pretty grim, in reality it feels surprisingly freeing to just face it.  Like these are big, unknown fears lurking just under the surface anyway, unconsciously sapping our focus and creating unease, so why not just haul them up out of the water where we can finally get a good look at them?  So far we’re finding that under the bright light of day, talking about these things isn’t horrible or morbid at all.  On the contrary, it’s a relief.  While it’s definitely emotional, it’s emotional in a kinder, braver way.  Not bad, really.

Well, this post has gotten too long.  The hubster and I are having our second go with the advance directives this weekend so I’ll try and post more about how it’s going next week.

(Next: Part VII: Advance Directives: Ours)

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


Red Flag: Could Doctors Bypass Our Medical Proxies With Electronic Access To Advance Directives?

Huh oh.  Here’s an FYI post.

I was just reading an article titled Handful of states promise physicians online access to advance directives  in Amednews.com, an online news source published by the American Medical Association, when I came across the following disturbing passage:

“By connecting the advance directive to an information exchange, a physician could access it without having to contact family or caregivers, or find out a patient’s login and password to current online registry programs. That connection would allow a physician to follow through on the patient’s wishes without any obligation to contact anyone.” (emphasis mine.)

Without any obligation to contact anyone?  HUH-OH.  Did the American Medical Association just toss out our right to a medical power of attorney?  Are there any doctors out there really thinking that online registries will allow them to sidestep our medical proxies, families, and loved ones? Or is this just a misunderstanding on the part of the journalist that wrote the article?

For those who don’t understand the question, here’s a little background:  There’s been a strong push by the government to make all of our medical records electronic.  (It started with Bush and received funding under Obama.)  The current goal is to have 100% of the nation’s records electronic by 2014.  (Not likely to happen that fast.)  Part of this massive effort involves establishing Health Information Exchanges, or HIE’s, at the state level, and states have already received a considerable amount of money to start setting these things up.

Enter: Advance directives that are registered online.

One of the goals for electronic medical records is to also have our advance directives available online.  States with A.D. registries are already working to connect them to the HIEs they’re setting up, and at least one private online registry, The U.S. Living Will Registry, is planning to coordinate with the HIEs.  That’s what the article is referring to when it says “By connecting the advance directive to an information exchange, a physician could access it without having to contact family or caregivers, or find out a patient’s login and password to current online registry programs.”

I’d be more inclined to dismiss this whole thing as a simple error if it wasn’t published in a news source published by the American Medical Association itself.  Could this kind of confusion exist to some extent within the medical community?  If there’s any possibility that it does then my natural inclination is towards exercising caution while some of the kinks are getting worked out of the developing electronic system and its use.

I looked around and found one possible solution. (Other than blind trust…which is not my forte.)  It turns out that, where online registries are concerned, the U.S. Living Will Registry also has an option for a Document Locator Form as an alternative to downloading the actual documents to their website.  The Document Locator Form directs a doctor or hospital seeking my advance directive to contact the people who know where it is and what it says, (i.e. my medical proxy and/or family) rather than giving them access to the documents themselves.  This creates an unfortunate hurdle for doctors trying to access my wishes, but it also provides a layer of protection during a chaotic transition to effective electronic exchanges.

My biggest fear with this is that a well-intentioned but ill-informed doctor might pull the plug on me before my family had a chance to reach my side and say their good-byes.  (While traveling for instance.)  I, personally, don’t mind hanging around a bit longer…however uncomfortable or undignified it might feel…if it gives the people I love the opportunity for that gift of closure.  I know the difference it would make for them during grieving would be profound.

copyright Dia Osborn 2011

Part IV: Advance Directives: Will They Be There When We Need ‘Em?

Continued from Part III: Advance Directives: Forms and Where To Find Them.

If you’ve followed my little journey through the advance directive maze, you might be feeling a little overwhelmed by now.  Linda over at Rangewriter mentioned in a comment that she is.  I admit, I am.  This stuff is even more confusing and uncoordinated than I thought.  (But I’m also relieved.  At least now I know why I’ve procrastinated for eleven years.)

I felt a twinge of resentment this morning because it doesn’t seem like completing an advance directive should be this hard.  But then it hit me that one of the reasons it’s so complicated is because we’re living (and dying) in the medical wild, wild west…a vast unexplored, exciting territory with new discoveries happening every day.

A couple of pioneering ancestors of mine.

So of course the learning curve is steep.  Pioneering always involves hard work.  But it also means there aren’t any right or wrong choices yet. Just lots and lots of new ones.

The other reason this is so hard is because, to figure out what I want, I first have to know who I am, what I value most, what I (suspect I) can and can’t bear, and what kind of legacy I want to leave behind for those I love.  Then…I have to put it all into words.  That’s some heavy lifting.  Especially in a society that’s as committed to never, ever, ever thinking about this stuff as ours is.  (Talk about starting with an understanding deficit.)

Enough.  Now that I’ve identified the hurdles, onward and upward over them.

ONLINE REGISTRIES FOR ADVANCE DIRECTIVES

In the last post I researched some of the advance directive forms we can choose from.  The next step is figuring out the ideal way to get our completed forms into the hands of those who will need them.  There are a few ways to do this:

1)  Make hard copies and hand them out.

2)  File them with an online registry, and

3)  Some blend of the above two.

In figuring out which way is best for us, here are some things we need to consider:

1)  Privacy issues.  This information is intimate stuff.  Who/how many do we really want to share it with?

2)  Security issues.  Who can we trust with this information?

3)  Confusion issues.  We need to update this information once a year or when it changes.  How do we make sure every copy out there is also updated?

4)  Accessibility issues.  How can we best ensure that the people who need this information will have it if necessary?

Hard Copies Vs. Online Registries

Privacy and Security:  Everyone’s going to have their own preferences for privacy concerning their advance directive.  Personally, while I want my specific personal information protected, I’d just as soon as many people as possible know what my wishes are.  I feel like the more people who know, the less likely it is that mistaken choices could be made.

In fact, I’m planning to include pertinent information from my advance directive in February’s posts, partly as a possible example of one way to do it, partly to stimulate some conversation, but mostly just to get the word out.  I feel pretty strongly that this is an area where secrecy is more likely to harm than help me.

Now, comparing hard copies to online registries in terms of privacy and security:  hard copies let us control how many copies and who gets them.  We can pick only the people we trust to take care of them, so there will be less likelihood of “leaks.”  These will also be the people we already have relationships with, and therefore people whom it will be easiest (and most necessary) to have ongoing conversations with.

On the other hand, every online registry has security protocols in place. (I suspect that private registries might provide better security than state registries at this point.  The current attempts to develop Health Information Exchanges are evidently creating some chaos.)

Confusion:  On the one hand, it’s harder to update hard copies, much less all the hard copies out there, as often as they might need it.  However, putting an advance directive online with a state registry now could also lead to confusion.  (Chaos link again.)  I’m rethinking my original intention to use our state registry for this reason.  At least for now.

Accessibility:  Hard copies have definite limits in the accessibility category.  Even if we’ve handed out copies to the right people, will they remember to pull them out of the file and bring them along to the hospital when they’re actually needed?  Online access promises to make our documents far more accessible in that hour of need…unless of course the computers are down.  (I don’t consider that risk unimaginable…and evidently neither do any of the online registries.  They all have disclaimers to sign stating that they’re not responsible in such an event.)

So, there are pros and cons to both hard copies and online registries, which is why I think we personally will use a blend of the two.  We’ll get a limited number of hard copies into the hands of kids and parents, and then register our documents with one of the private online registries where our other loved ones will be able to view them with the use of a private link.

Here are the web links for three different online registry services (you’re gonna have to do a little digging on your own to find your state’s registry, if that applies):

State online registries:  Only a few states have these so far.  Here’s the most recent list I could find from FierceHealthIT. 

Several states have created online advance directive registries with the intent of connecting them to statewide health information exchanges (HIEs), according to an article in American Medical News. Recently, Virginia became the latest state to take this action, joining Idaho, Montana, and West Virginia. Washington state also planned to start an advance directive registry, but had to drop that plan because of budget cuts.

U.S. Living Will Registry: Provides access to documents 24 hours per day, anywhere in the world.  Also provides a wallet ID card, labels to attach to drivers license and insurance cards, and yearly reminders to update your directive if necessary.  Also provides document access to medical personnel (of course) as well as online personal  access to registrants for viewing and updating documents.  Any advance directive form is compatible with this registry.  There are fees.

(The U.S. Living Will Registry is also planning to coordinate with the state registries of Vermont and Washington.)

America Living Will Registry:  Provides access to documents 24 hours per day, anywhere in the world.  Provides an ID card with a toll-free emergency number and web address.  Emergency medical personnel may obtain copies of your directives either on-line or via fax.   Any advance directive form is compatible with this registry, including Canadian.  There are fees.

MyDirectives.com:  Provides both medical and personal access to documents 24 hours per day, anywhere in the world.  They don’t provide an ID card to protect registrants’ security.  As I mentioned in an earlier post, MyDirectives.com is a new approach that provides a completely web-based form and registration process which promises to be a lot more user-friendly than anything so far.  They provide their own advance directive to fill out with helpful prompts and conversation starters.  Other advance directive forms cannot be used with this registry.  Their service is free.

Well, today’s the last day of January so I guess this concludes the research leg of the journey.  Time to roll up our sleeves and take the first real step.

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

copyright Dia Osborn 2011

Part I: February Is Hereby Declared Advance Directive Month. Join Us!

It’s better when we do it together.

Confession: I haven’t done my advance directive yet.

I’m embarrassed to admit it, but there it is.  In spite of my harping and spouting I haven’t walked my own talk.  (Not entirely sure why but probably because this shit is not only scary, it’s confusing.)

Well, it’s time to climb off the soapbox and dive into those cold waters like I keep telling everyone else to do.  I’ve done one thing at least…talked to the people most likely to make decisions for me if worst comes to worst…but that’s not enough.  No…ho…ho.  They’ll also need legal paperwork to prove that I mean what they say, so I need to do the deed itself.  Put pen to paper.  Download the state forms, sign on the dotted line, and give them copies.

It’s Time to Legalize And Let It Go.

The hubster is doing this with me and while we’re at it, I wanted to invite everyone else who hasn’t done their advance directive yet, but wants to (or not) to join us on our little adventure.  I’m going to try and enroll my kids and siblings and their families in the process, too, because I really want to know what they want in case (God forbid!) I wind up having to make decisions for any of them. 

IMPORTANT SAFETY TIP:  The need for an advance directive knows no age limit, anyone can wind up incapacitated and unable to make decisions at any time.  If you’re 18 or over, this sucker is a good thing to have. 

I’m assuming this process will bring up questions, fears, and insights along the way that we can all help each other with and learn from so IMHO, the more the merrier.

Are you ready to rumble?!!!

In the next couple of weeks I’ll be researching and posting about the who’s, why’s, what’s, where’s, when’s, and how’s of the process, and then in February the hubster and I will take the plunge and do all the concrete steps necessary to make sure that everyone from intimate family members to state agencies are clear on what-we-would-and-would-not-want in the event.

So if you haven’t filled out your advanced directive yet either, feel free to join us.  I figure there’s strength in numbers.

Next post:  Part II: What Is An Advance Directive? (Or Why I’ve Been So Confused.)

copyright Dia Osborn 2011

Unthinkable? No, Dying Is Perfectly Thinkable.

living will

The Los Angeles Times posted an excellent article by Steve Lopez last month discussing the urgent need we all have to not only discuss our wishes with those who are likely to make them, but codify those wishes in written and legal form.  For anyone who’s been thinking about doing so but is unsure how to proceed, please take a look.  It has links to some great resources that might help.

There’s only one thing about the article I took issue with; the title.  Having To Think About The Unthinkable.  Because it reinforces the wrong but tenacious belief in our oh-so-death-averse culture that dying is an unthinkable (not to mention unspeakable) topic.

That’s just not true.  Dying is totally thinkable.  In fact, collectively, we do it all the time.  I do it.  So does everyone who works with hospice and palliative care.  So does everyone who’s currently dying, and all the people that love them.  So do elders who are fast approaching, people who get questionable results on scans, and those who experience a close call in a plane, on a highway, or in a hospital.  Anyone who follows the news is exposed to reports about dying every day, and a movie about dying called Final Destination was seen by so many people, so many times, that it spawned three sequels and made its makers hundreds of millions of dollars.

In fact, our tendency to secretly think about dying a lot is at the heart of our entire preventive health care system. No one in their right mind would consent to (much less insist on) the discomfort, indignity, potential danger, and expense of so may foreign objects poking our veins, irradiating our tissue, and probing our various holes without the thought of dying as a strong motivation.  So, no.  The idea that dying is unthinkable is a total myth.  Not only is it perfectly thinkable, there’s a respectable portion of the population secretly doing it at any given moment.

What I’d like to do is encourage everyone to think about it more openly.  Because keeping all those thoughts and fears chained naked to the floor down in your seriously clenched gut only serves to make the prospect of dying more frightening, not less.  Trust me on this one.  Dragging the monster out from under the bed where you can negotiate with it and set up some ground rules is a very, very good thing to do. 

Okay, yeah.  I’m gonna die.  You win there.  But this is how I want to do it; no tubes, no persistent vegetative states, no bankrupting the family and leaving them destitute.  However and whenever you decide do this buddy, I want to minimize my own suffering as well as the suffering of my loved ones.  This is important to me.

I think a lot of people don’t realize that death is absolutely fine with that.  Contrary to how it’s portrayed in Final Destination, death is a neutral force, not a malevolent one.  It doesn’t want us to suffer and it doesn’t care if we take steps to prevent that from happening.  It leaves full control for how we navigate the process to us.  It’s like kayaking.  We can either take time to study the river beforehand and craft an intelligent plan for those class 5 rapids with a forty-foot waterfall at the end, or we can fall into the boat backwards and wing it.

Which ride would you rather be on?

Death is like the river.  It doesn’t care about the quality of our ride, it’s only job is to sweep us downstream.  The rest is up to us.  And if we decide we’d rather do it with foresight, skill, and courage?  Then our relationship with the dying process is transformed from a catastrophe into a partnership and the gifts of that–the power, dignity, strength, love, sacrifice, generosity, and surrender it generates–remain long after we’re gone to help those we love recover and return to a full life.

Thinking and talking about dying, long before it happens, is well worth it.

Here’s a link from the article that has an excellent guide on how to have a conversation about end-of-life-care wishes with your loved ones. (You can use it as a starting point to have a conversation about it with yourself, too.)  And to download a copy of your state’s Advanced Directive, here’s a link to a website called Caring Connections which has a wealth of other information as well.

And because I mentioned kayaking, here’s the trailer for The Halo EffectIt includes some unreal footage of kayaking elite and waterfalls.  The opening narration tries to explain why these guys do what they do and is worth a listen, but if you just want kayaking footage, it starts at 1:00 into the trailer.  It’ll knock your socks off.

copyright Dia Osborn 2012

How Thinking About Dying Is Helping Me Navigate Life

Rudder

This week I got a surprise dividend from all the time I’ve spent thinking about;

1) how I’d like to die, and

2) how to explain it to a loved one making choices for me.

But in order to explain the dividend I have to go back to the beginning of the year.

As I relayed in False Positives Are The Tenth Circle of Hell, starting in January the hubster and I endured four stressful months of an unnecessary prostate cancer scare.  What I didn’t mention in that post was that, during Month Three of this ordeal, I went in for my first mammogram in eight years and afterwards received a call back informing me that I needed to come in for further scans.  The radiologist had questions and wanted a second look.

I felt like I’d just been slugged.  I was already grappling with the onset of a depressive episode because of the fear and uncertainty surrounding the hubster’s prostate scare and I quickly realized there was no way I could simultaneously navigate the stress of a second scare without going down for the count.  I decided to postpone dealing with mine until I found out what was going on with the hubster’s.

Which was easier said than done.  The aggressive barrage of phone calls and letters that followed pressuring reminding me to schedule an appointment for further treatment only pressed me deeper toward the depressive episode I was fighting to stay out of.  (What’s up with that anyway?  People with real cancer don’t get that level of follow-up.)

Finally, we received the news that in spite of an elevated PSA, the hubster’s prostate was actually perfectly healthy.  The last four months were “just” a scare.  As I described in my post about the incident at the time, I didn’t feel relieved.  I felt conned.  Not by any of the people we dealt with…everyone was genuinely concerned and trying to help…but rather by a system that had gone horribly wrong for us.

Clearly, I needed to understand how it went wrong so I could navigate my own health scare differently.  I started researching.  What I discovered dismayed me.  First, I learned that the PSA test isn’t even FDA-approved for cancer screening, and the fact that it’s been widely deployed for that purpose has been the subject of controversy for over twenty years.  The jury is still out on whether the benefits of mass testing justify the resulting high rates of over-diagnosis, false positives, and over-treatment.

Then I moved on to mammograms and found some equally disturbing news.  Mammography neither prevents nor cures breast cancer and, while there does seem to be a modest benefit in decreasing mortality, the length of time screening actually extends lives has yet to be determined. Yet estimates for false positives run anywhere from a conservative 60% to a radical 90% of all callbacks, and some say over-diagnosis of breast cancers that would have regressed on their own may run as high as one in three.  Over-treatment is rife.  But the harm caused by all this is only just beginning to be studied.

Now, there are a lot of people who feel that if even one life is saved by all this over-doing, then any harm it causes is worth it.  And I really appreciate the fact that they value life that highly.  Because I do, too.

However, being one of the harmed myself now, I can’t help but feel some reluctance to continue the project.  While I’d dearly love to help save that one life, too, I can’t afford a descent into depression every time the system makes one of these frequent mistakes.

So with all this on my mind, for the last six months I’ve been considering what other course I could chart for myself; researching, sifting, weighing, and waiting for the voices battling in my head to reach some kind of consensus. On the one shoulder I’ve had all the aggressively pro-mammogram voices screaming, Go for the call back, woman! You could die! You could DIE!!  While on the other shoulder I’ve had my own voice warning, Careful Dia. You could easily slide into a depressive episode here that you can’t climb back out of.

(BTW, for those of you who asked what I meant by exercises for developing emotional endurance, this is an example.  I had to sit and hold hands with some incredibly uncomfortable, even frightening emotions while waiting for my eventual answer to put in an appearance.)

Then this week, I suddenly remembered a choice I made seven or eight years ago about dying that immediately and completely put all the voices to rest.  In her book Talking About Death Won’t Kill You (great title, no?) Virginia Morris offered a question to use when trying to talk to elderly parents about end-of-life choices.  She suggested we ask them:

If something happens and I wind up having to make medical choices for you, would you rather I erred on the side of doing too little or doing too much?

First let me say, this question is worth its wait in gold.  I kid you not.  I’ve posed it to a lot of different people over the years and the answers I received have frequently surprised me. I think this one question alone could save a boatload of suffering, if everyone only knew and asked it.

But back to what my own personal answer would be if I was asked, the instant I heard the question it was a no-brainer.  If anyone ever asked me, I’d tell them to definitely err on the side of doing too little.  Always.  I’m just not wired for the game of brinksmanship involved in trying to grab as many extra moments as possible at the risk of getting hopelessly entangled in the medical interventions that make them possible.  While that kind of extra time is worth the risk for some (particularly those with small children or other dependents who still need them) at this point in my life it certainly isn’t worth it to me.

It’ll be enough for those who love me to know that I have no qualms about giving up extra time…years if necessary…if it means being able to live a full and vibrant life, journey through a meaningful dying time, and then die a peaceful, simple death at home surrounded by people that I love.

So.  What does this understanding I’ve come to about the end of my life have to do with the current choice I’m facing in the middle of it?  Well, as you’ve probably figured out by now, it’s essentially the same question, only in a different situation.

Faced with a questionable mammogram but high rates of false positives, would I rather err on the side of doing too little or doing too much?

And as soon as I realized what the real question was, I immediately knew the answer.  I’ll choose for the least medical intervention possible, because that’s who I am.  It’s actually the same choice I’ve been making my whole life, only without realizing it.  Clearly, it’s the one I’m most comfortable with.  

It’s why I gave birth to both kids at home and navigated two decades of depression without antidepressants.  It’s why, when dealing with any illness or injury, I start with the least invasive treatment first and then work my way up from there.  It’s why I’ve spent so much time exploring less-invasive forms of medicine to supplement my use of modern medicine.  And I think it may even be part of the reason why I was so drawn to work with hospice; because it’s the way to die that usually involves the least amount of intervention.

The whole realization was kind of blinding.  I mean sure, I’d been hoping for some kind of resolution but I certainly wasn’t expecting an answer that big.  Suddenly my entire life, as well as a huge chunk of medical decisions I’m going to have to make going forward, just got a lot simpler.  And why?  Because of something I learned about myself while considering how I want to die of all things.

That’s the surprise dividend I mentioned.  Not bad, eh?

So what will I do about the current situation going forward?  Well, I’ll practice weekly home breast exams and watchful waiting until my next check-up in December.  Then I’ll discuss the whole thing with my doctor and get his input on where to go next.

And then (this is unrelated but something I’m kind of excited about)…if he’ll let me…I’d like to initiate our first conversation about how I want to eventually die a good death and see if I can get him on board with talking about the whole idea.  (I don’t think it’ll be a big leap.  Dying is totally the topic on the table as soon as you start talking cancer screening.)  I like Dr. R.  He’s a nice guy and a good doctor and if he’d be my primary till the day I died, I’d be happy.  We’ll have to see if I scare him off though.  I’ve never done this before and don’t really know what that kind of conversation is supposed to look like, but still.  There’s no time like the present to try, y’know?

copyright Dia Osborn 2011

Update:  10/10/11  Looks like I’m not the only questioning  what’s going on.  New recommendations are being mulled over for PSA tests.  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.”