Tag Archives: Talking about dying

The Laughter and Sorrow of Being There

Posted by Dia in Living and Dying and tagged with , , , , ,

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

Maybe I’m Just Dreaming Here…

Posted by Dia in Living and Dying and tagged with , , , ,

In ordinary, everyday life, things look ordinary and everyday.  They just do.  Days tend to go the way we expect them to which makes life comfortable, predictable and…let’s face it…easy to take for granted.  Abundance is one of the things that breeds this kind of carelessness.  When it looks like we still have an unlimited supply of tomorrows it can make what we do with today seem unimportant.  Less urgent.

Which isn’t true of course.  Every last thing we ever do from taking a breath, to grumbling about chores, to graduating from college, to losing a job, to giving birth, to getting old, to dying, is an irreplaceable, priceless gift of life on a long chain of irreplaceable, priceless gifts.

But the illusion that any given moment doesn’t matter can be powerful and, when I think about it, perhaps not altogether unnecessary.  After all, it could be hard to get stuff done if we were face down on the floor all the time, incapacitated with the kind of wonder, longing, and gratitude for life that often comes to a person when they learn it’s their time to die.  I mean Big Awe can be fabulous, for sure, but it’s not terribly practical when you’re tackling a to-do list.

And yet, I do so love that feeling of dawning wonder.  Those moments when I look at my life and realize (for a mind-blowing, gut-wrenching moment) just how fragile, miraculous, and brief all this is.  Oh sure.  Those moments tend to wreak havoc with my daily routine because after a glimpse like that I want to slow down and savor everything.  Even things like taking the trash out and wiping under the rim of the toilet bowl take longer because crappy though they are, they’re suddenly glowing, like everything is glowing, and it’s really distracting.

But this spike in inefficiency is worth it to me because, for however long those moments last, I’m not afraid anymore.  Of anything.

Look.  I realize that dying is generally held to be a morbid subject and I know it’s odd for me to want to talk about it as much as I do.  But I can’t shake the hope that if I could just capture a couple of those brief and luminous moments in words, that maybe somehow it might help ease some of the deep, unconscious fear somebody else has, too.  That maybe if some of the general, widespread terror could be alleviated, our lives and relationships with one another might be transformed today, long before we ever have to face dying ourselves and embark on our own journeys.

Of course this is probably just a pipe dream.  Most likely, everything is perfect just the way it is and I should just be quiet and garden instead.  Dying is probably a reality too big to cope with in everyday life, too vast and searing to look at until we’re right on the brink of falling in.  Maybe we’re supposed to just forget, fall asleep and live in the dream of small, safe things until the yawning maw opens wide to swallow us at the end.

But then again…maybe not.  What if there’s no law ordaining that we have to wait until we’re actually dying to glimpse the strange, revealing light it offers?  What if the rules are more flexible than that?  What if it’s perfectly okay, even good, to look around us sometimes with transformed eyes while we’re still healthy, happy and whole, so we can see once again, however briefly, just how huge, beautiful, terrifying, priceless, miraculous and brief this life really is?

What if, however impractical or inefficient they might be, moments of heartbreaking wonder were actually good for us?

copyright Dia Osborn 2011

When extraordinary forces act upon mere humans beings (even if we don’t want them to.)

Posted by Dia in Living and Dying and tagged with , , , ,


NASA photo: Solar particles interacting with Earth’s magnetosphere.

Nine times out of ten when a person found out that I worked with hospice they’d stare at me wide-eyed and say I could never do that. But I was never fooled by this.  Of course they could.  Anybody can.  Bathing, dressing, and toileting are not rocket science.  They don’t require rare tools or four hands.

I always knew what people really meant was I never WANT to do that…a sentiment which, while perfectly normal and near-universally shared, is irrelevant.

Life is full of things we don’t want to do but at some point wind up doing anyway.  And sometimes, much to our surprise, when the time comes we wind up doing them gladly.  It’s important to remember that, no matter how skillfully we hide, sooner or later we’re probably going to be dragged back out of our hole and plumped down beside the death bed of someone we love anyway.  And once we’re there, yes, of course we’ll be as rumpled, wild-haired, and sleep-deprived as everyone else who ever sat by a death bed before us.

But here’s the thing.  With as hard and devastating as it’s likely to be, we’ll also probably experience that same unexpected, fierce moment when we completely forget about how we never wanted to be there, because all we now feel is a throbbing, shattering gratitude that we are. That we get to hang on for dear life to their hand one last time and whisper how deeply, how much, we will always, always love them.

Y’know, there’s nothing wrong with the profound and irreparable wounding that comes to us through our great love for one another.  Far from it.  This wounding is essential and deeply human.  We’re supposed to be dragged under and scarred sometimes.  It’s a big part of what helps save us from the aching emptiness of a shallow life.  I’m not trying to mislead anyone here—all beauty aside, dying and its accompanying losses tend to be brutal for everyone involved.

But I’m telling you, somehow every single person I worked with went right ahead and navigated the journey anyway…and I can’t begin to tell you how much that one, simple fact floored me.  At first I couldn’t quite believe it.  Then later, as I watched each one of those ordinary, average, regular, everyday people negotiate an event with a destructive power equal to any earthquake or solar flare, I experienced a growing sense of both wonder and indignation.

Wonder at how infinitely much stronger we are than I’d previously understood.  And indignation that somehow, somewhere along the line, I’d been lead to believe we weren’t.

copyright Dia Osborn 2011

From THE ONION: “World Death Rate Holding Steady at 100%”

Posted by Dia in Living and Dying and tagged with , ,

I adore these writers.  For those who haven’t read it before, The Onion is a satirical magazine (originally paper with a now-huge online presence) that makes fun of absolutely everything.  I just came across this tongue-in-cheek article from 1997 that directly addresses the poll I took a few weeks ago, asking about whether or not people believe we’ll eventually find a cure for death.  Here’s a bit:

GENEVA, SWITZERLAND—World Health Organization officials expressed disappointment Monday at the group’s finding that, despite the enormous efforts of doctors, rescue workers and other medical professionals worldwide, the global death rate remains constant at 100 percent.

Death, a metabolic affliction causing total shutdown of all life functions, has long been considered humanity’s number one health concern. Responsible for 100 percent of all recorded fatalities worldwide, the condition has no cure.

“I was really hoping, what with all those new radiology treatments, rescue helicopters, aerobics TV shows and what have you, that we might at least make a dent in it this year,” WHO Director General Dr. Gernst Bladt said. “Unfortunately, it would appear that the death rate remains constant and total, as it has inviolably since the dawn of time.”

A sense of humor about these things is invaluable.  For anyone who hasn’t taken the poll yet, you can still go back and let me know what you think.  I continue tracking it.  Someone dropped by recently who thinks that we will eventually find a cure for death but unfortunately they didn’t leave a comment.  If anyone else with that perspective happens to drop in for a vote, would you mind leaving a comment, too?  In spite of the satirical note of this Onion article, I’d really love to hear your thoughts about it.  I’m fascinated by all different views.

Thanks!

The Stars We Steer By

Posted by Dia in Living and Dying and tagged with , , , , ,

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?

Posted by Dia in Living and Dying and tagged with , , , , ,

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

And The Death Panel Two-Step Takes Another Turn Around The Room. Damn.

Posted by Dia in Living and Dying and tagged with , , , , ,

This image from Wikipedia is so great I had to use it again.

 

Well dear readers, I just read the bombshell.  Last week, in The Death Panel Two-Step, I wrote about The New York Times revelation that, in a political style stealth-move, regulation approving Medicare reimbursement for doctors to discuss end-of-life care wishes with their patients was going to be included in the new health care reform policy after all.

When I first read the news I was happy about the policy, but dismayed and uneasy about the secrecy.

Now, my fears are confirmed.  Barely a week later there’s been a complete turn around.  The New York Times is now reporting that, since the news broke, minds have changed and the regulation was re-removed from the policy that went into effect on January 1.  The suspected reason?  The administration needs to reserve political capital for the bigger upcoming battle over the health care reform bill as a whole.

And so the dance around Advanced Care Planning Consultations continues.  For those who may not have been watching closely, the steps so far have looked something like this:

Last year: The original legislation mandating reimbursement for doctors’ time  is included as part of the overall health care reform bill.  Result:  The death panels outcry.  The legislative language is subsequently removed from the bill. 

Then last week: The story surfaces in the NYT that the bit about consultations has reappeared in the bill under the invisible cloak of regulatory language, and it will become law as of January 1.  Inevitable result:  The invisible cloak is ripped aside and the death panels outcry is renewed. 

Today: The New York Times announces that the Obama administration has reversed course yet again.  Result:  Any doctor who takes the considerable time required to educate a patient about preparing for the dying process is going to have to pay for it out of his/her own pocket.  That discussion will now only happen as an act of charity because Medicare won’t pay for it, nor will most insurance companies, nor will most patients (who can be reluctant to have that conversation in the first place, free or not.)

So for the time being it looks like politics will continue to dominate the debate about end-of-life care conversations.  The Left and the Right will continue their wheeling and reeling around the dance floor, locked in an increasingly hostile embrace, both sides far more committed to fighting for the lead than actually listening to one another (or, far more importantly, trying to communicate effectively with us.)

I’m so saddened by this.  I can’t help but think of all the suffering, frightened people this year who will be sliding backwards into the dying process, flailing and totally unprepared, with a very good chance they won’t even be able to turn to their doctor for adequate answers or guidance when it comes.

There’s a lot of blame for this mess flying around right now, and its all directed at the politics that came into play.  But I think that’s all just smoke and mirrors.  Blaming the politicians and holding them responsible for the quality of our dying is a most excellent way to avoid facing a deeper and far scarier truth; the majority of us are subconsciously grateful  for the gridlock because now we still won’t have to talk about the fact that we’re going to die.

Most people are terrified to talk about dying in general and their own dying process in particular.  Deep down, we don’t really want to have that conversation with our doctor to begin with.  We don’t want to even think about, much less fill in, a living will.  We don’t want to discuss with our spouse or children or friends what it’s going to be like as we die.  And we certainly don’t want to look close enough at the gory details involved to make effective, useful plans.

The deeper reason this legislation didn’t pass is not because Democrats and Republicans couldn’t cooperate, but because most of us don’t want them to.  Not on this one.  Who in their right mind goes to the doctor to talk about dying anyway?  Nobody?  That’s the last thing we want to pay good money to hear.  We can die for free.  No. The reason we usually go to a doctor is to find out about all the new, better, and increasingly expensive ways there are to stay alive.   And if one doctor can’t deliver a possible escape route then we’ll just keep on looking for another one who can.

Talking about dying in our culture is still a big taboo and it’s all about fear.  Deep, irrational, primal fear lurking just below the surface, waiting to sabotage any and all attempts to deal with dying directly.  It’s hard to imagine any good legislation being passed until this fear is both better understood and respectfully addressed.

With that in mind I thought I’d re-post something I wrote back in August about just this topic.  The name of the post was Christmas Trees and Death Panels: How Fear Sets a Snare and (if I can figure out the technical details of how to do it) it should be coming up next.

copyright 2011 Dia Osborn

The Death Panel Two-Step

Posted by Dia in Living and Dying and tagged with , , ,

image from Wikipedia

Remember all the hue and cry about “Death Panels” last year?  Recall how powerful the fear was that it invoked, and how the outcry wound up blocking legislation aimed at reimbursing doctors for the time required to provide patients with information regarding end-of-life care?

Well, where legislation failed, it looks like regulation will prevail.  The New York Times carried a front page article a couple days ago leaking news that under new Medicare regulation, starting on January 1, 2011, doctors will now be reimbursed for the time required to provide patients with adequate counseling for end-of-life care planning.

“The final version of the health care legislation, signed into law by President Obama in March, authorized Medicare coverage of yearly physical examinations, or wellness visits. The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit.

Under the rule, doctors can provide information to patients on how to prepare an “advance directive,” stating how aggressively they wish to be treated if they are so sick that they cannot make health care decisions for themselves.”

As some of you may remember, I wrote about this subject a while ago in Christmas Trees and Death Panels:  How Fear Sets A Snare.   Back then, I was disappointed but not terribly surprised that this legislation failed because it’s nigh-on impossible to legislate something that no one will even discuss.  As someone who worked for six years with hospice and who strongly advocates for end-of-life care conversations, I’m certainly glad it finally passed.

But my reaction is hardly all leaping  joy and ribbon waving.

On the one hand, I’m profoundly relieved that one of the major roadblocks to physician/patient discussions about end-of-life care is now removed.  Even though this policy doesn’t address the real elephant in the room…the fact that most doctors are clueless about how to have that particular discussion with a patient…it at least now provides a financial incentive for them to face into all their deepest fears about death and dying and try to learn how to talk about it.

And I believe that’s a good policy.  To explain why, I’ll refer once again to the decades long experiment in La Crosse, Wisconsin where doctors have been having regular end-of-life care conversations with their patients since the mid-1980’s.  I’m not exaggerating when I say that this one, simple  practice has made the quality of dying in La Crosse  among the most benign, respectful, compassionate, comfortable, and enlightened in the nation.

Having said all that however, I’m still bummed at the stealth used to get this policy instated.

“While we are very happy with the result, we won’t be shouting it from the rooftops because we aren’t out of the woods yet,” Mr. Blumenauer’s office said in an e-mail in early November to people working with him on the issue. “This regulation could be modified or reversed, especially if Republican leaders try to use this small provision to perpetuate the ‘death panel’ myth.”…

The e-mail continued: “Thus far, it seems that no press or blogs have discovered it, but we will be keeping a close watch and may be calling on you if we need a rapid, targeted response. The longer this goes unnoticed, the better our chances of keeping it.

So why does this kind of behind-the-scenes maneuvering dismay me?  Because it’s going to make having an open, constructive, educational, illuminating, respectful, national conversation about dying even harder than it already was.  (I didn’t know that was even possible.) Far from building any kind of consensus or trust, or making an attempt to listen to or address some of the real fears feeding into the Death Panels uproar, it instead seems to confirm one of the deep fears a lot of people already have about linking how we die with big government: namely, that those in power don’t really care about the concerns or desires of everyone they govern, but are only intent on imposing laws that they believe are best for everyone.

Overall, I rate this new regulation as basically two steps forward for health care policy, and one step back for public discussion and trust.

Sigh.

I foresee, with my magic crystal ball, that setting public policy around dying is going to continue to be a tough dance for everyone to learn.

copyright 2011 Dia Osborn

Update: Snoring Dog Studio expressed some confusion in the comment section as to what part of this regulation I was objecting to.  Great question.  It made me realize I didn’t reference something important that was said later in the article.  I have now included the pertinent quote.  Thanks Snoring Dog!  




Life Is Like A Trust Fund

Posted by Dia in Living and Dying and tagged with , , , , ,

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

“Dying” is Still Alive

Posted by Dia in Living and Dying and tagged with , , , ,

I’m starting to suspect a lot of people use the terms dying and death interchangeably, or link them so closely together in their minds that they can’t easily discriminate between the two.  At least subconsciously.  I suppose that’s to be expected, considering neither of them are things we talk about much.  Let’s face it, anything unfortunate enough to tumble into the closed pit of taboo topics is destined to collect a lot of misunderstanding.

But this particular area of confusion intrigues me more than most because it’s hard to find two things more different than dying and death.  Exactly how different are they?  Polar opposite different.  World’s apart different.  Different as in “If you had a choice of which one you wanted to be at this very moment, which would you pick?” different.

Death is dead.  Dying is still very, very much alive.

In fact, it may well be one of the most alive periods we get over an entire lifetime of being alive.  I think this is a very, very important point to remember because, startling though it may seem, dying can be easy to miss. 

(Not dead…dead is unmistakable.  Dying can be easy to miss.  See what your mind did there?)

With the current medical paradigm focused primarily on cure, we can spend so much time fighting not to die that we wind up going straight from being sick to being dead, thereby missing the peculiar and healing light of the world of dying that lies in between those two.  We can miss both the chance to realize Oh wow…this is it.  I’m dying now….as well as the gift that comes from spending the rest of our days in that final place where life first collapses, and then supernovas into Life itself.

So if there was only one piece of advice I could pass along it would be this:  Don’t close your eyes. Don’t condition yourself to denial and blindness.  Because, for all their power to transform and heal, the miracles at the end of life are delicate, twinkling, and brief and, if you’re not alert enough to look for them, they can be very, very easy to miss.

copyright Dia Osborn 2010

How Much Money Is A Dog’s Life Worth?

Posted by Dia in Living and Dying and tagged with , ,

Well, Dane the rescue mutt’s digestive troubles mushroomed and Friday turned into an emotional day from hell.  He was off his feed on Thursday and by the following morning refused to eat at all.  This has never, ever happened.  Ever.

This dog has eaten grocery bags, sticks, and bread by the loaf.  He vacuums up windfall fruit, grazes on tomato bushes, and chewed an entire crop of carrots down as far as he could get into partially thawed soil.  He once frantically tried to swallow an entire fresh-caught mole without chewing when he saw me coming.  He eats grass like a cow, cow shit like a fly, and anything at all if it’s started decomposing.  He can down a huge, rawhide chew toy in under three minutes and goes through soft bones like taffy.

He’ll eat anything, gladly and at lightning speed.  We’ve exhaustively tried to train him not to and failed.  Short of a muzzle or strict house incarceration we can’t stop him.  So on Friday morning, when he refused to eat, I felt a flicker of real fear.

Then I discovered the brown, splattered stains of diarrhea all over the guest bedroom carpet.  (Visit? anyone? anyone?) Next I went out in the backyard and a quick survey of four days worth of dog excrement told me this problem had been developing for a while.  Dog flatulence was the least of our problems.  Dane had turned into a sick, little, hundred-pound puppy.

I finagled a vet appointment for 1:30 in the afternoon which left my mind roughly six hours to play in the field of worst case scenarios.  Bowel obstruction?  X-rays and surgery?  Another thousands-and-thousands-of-dollars vet bill?

Or euthanasia?

My mind leaped to these extremes for two reasons.  First, because I was still reeling from the $3400 cat bill last month.  And second, because the hubster (after I put in a worried call at work to let him know what was going on) informed me Dane spent some stolen time five days earlier feasting on rotting, bony, fish carcasses along the banks of the Salmon River.   The hubster and visiting friend had taken him with them on their fishing trip, and he sneaked off at one point and gorged himself on fish skeletons.  Fast forward to Friday and it was time to pay the piper.

Now, just to take you all off tenterhooks, the boy is fine.  The vet concluded the gastrointestinal upset was probably caused by a bacterial infection he picked up while scavenging all the crap.  He’s now dining on four, large, butter wrapped, antibiotic pills a day, along with moist cans of bland dog food.  He can’t believe his good luck and is touting the benefits of eating rotting fish to all who’ll listen.

What I really wanted to talk about here were some of the grim choices I considered during those six, hellacious hours of uncertainty, most of which revolved around the following question:  Financially speaking, just how much is a pet’s life actually worth?

Most pet owners eventually face a vet bill formidable enough to consider the question and feelings can run pretty high about what the answer should be.   There are, of course, the two extreme camps.

1)  People like this:

“Yeah, it is great when people have no money to care for their pet so they put it to sleep. They usually get another one too. Hope you are not that stupid. Pets are a luxury item and you need to be prepared for these type of problems.”

And 2)  the “it’s just a dog” people:

“I don’t know what the rest of you are smoking but its just a dog. I can see someone spending that kind of money to fix your child’s leg but not a pet!…In my opinion, you should let your dad take care of the problem, put it out of your mind, and pick up a new healthy dog at a shelter.”

But while both these views share the gift of moral simplicity, neither addresses the complex reality that an explosion of new, medical interventions has forced on us.

Once upon a time veterinary options were limited and, when it got serious, there was no choice at all.  It was just time to put Spot or Whiskers down.  But the evolution of veterinary medicine has catapulted us into a brave new world where, for those lucky enough to have deep pockets, there are now some real medical miracles available.  There are currently surgical and pharmaceutical treatments for animals that rival human ones, both in complexity and cost, but the majority of pet owners don’t have that kind of money.  In fact, these days most of us are struggling just to meet the demands of our own human, health care needs.

So if the first claim was true, that people who can’t afford new, higher vet bills shouldn’t have pets at all, it would eliminate a large number of potential pet owners.  Personally, I shudder to think what would happen at animal shelters across the country if this ever happened.  Adoptions would slow to a trickle and the number of animals being euthanized for non-medical reasons would balloon.

On the other hand, most people would (thankfully) disagree with the second opinion…that we should look at our pets as disposable possessions, like Bic lighters or paper plates.

So where does that leave the rest of us?  How are we supposed to navigate the conflicting requirements between taking in a beloved companion and not being able to afford catastrophic costs?

Well first of all, I think the original question, How much is a pet’s life worth?, is inherently flawed.  The life of an animal can no more be measured in monetary terms than the life of a human being can.  Life is life.  It’s sacred.  It’s one of the great Mysteries.  We can’t create it or even make it last all that long once its appeared, and it’s ridiculous to try to reduce something transcendent like that to a pile of cold, hard cash.

Yet, here’s the rub:  Even though ultimately we have no control over this thing called life, we’re still all assigned as stewards.  We’re each responsible for at least our own and, every time we drive a car, own a pet, have a child, or vote on a health care bill among a million other things, we’re also shouldering responsibility for the lives of others.  There’s no escape.  And while sometimes this responsibility is a beautiful, luminous gift, sometimes, like when we have to make a life and death choice for ourselves or another, it can morph into a near-unbearable burden.

I cried off and on all morning, waiting to take Dane to the vet.  His illness unexpectedly sucked me down to a place where I found myself considering The Choice.  There was a possibility that we might be facing yet another vet bill mounting into the thousands of dollars and we had to decide whether we could really afford it.  For whatever reason, Dane has been a disastrously expensive pet.  Over the course of the last five years, between health issues, accidents, special nutrition needs, and a strong predatory instinct, he’s cost us into the five digits.  We never dreamed a pet could cost this much.  His needs have eclipsed the expense and work required by every other animal we’ve owned combined, and yet we continue to adore him because he’s an affectionate, joyous, grateful dog who tries so very, very hard to make us happy.

But in the end, we’re not among the lucky few with unlimited financial resources.  At some point, because Dane is the wild, fragile, phobic, allergic, epileptic, boisterous, playful, smart dog that he is, the mounting costs are going to exceed what we can pay without jeopardizing other critical family needs.

And that, my friends, is where I think the real question lies.  Not How much money is a pet’s life worth? but How do I balance the financial needs of my pet with the financial needs of the rest of us? At what point exactly do my spending choices move me from being a caring, responsible pet owner into a negligent parent, spouse, offspring, or general member of society?  Our pets are a big responsibility but they’re by no means the only one.  This will always be a difficult question because there’s no firm answer, each case is unique, yet most of us will eventually have to answer it one way or another, either consciously or by default.

For us, because Dane is only one member of a larger family, someday we’ll probably have to make The Choice and it will probably be devastating and, yes, money will probably play a role.

But let’s be clear.  While finances may set the final parameters for what we can give him medically, money will never, ever define his worth to us.  It can’t.  It can never measure the depths of his big, beautiful, generous heart, or the love, joy, and adventures we’ve shared, or our unending gratitude at being chosen, for at least a little while, as the stewards of his life.

copyright 2010 Dia Osborn

Shhhhhh…..

Posted by Dia in Uncategorized and tagged with , ,

image: Shhh by Str8UpSkills

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

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

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

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

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

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

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

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

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

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

I’ll try and remember that next time.

copyright 2010 Dia Osborn

Why The Disabled Are Worried About It

Posted by Dia in Uncategorized and tagged with , , , , ,

In last Friday’s post I mentioned that, much to my surprise, the disabled seem to have good reason for worrying about assisted dying/assisted suicide (I’m going to shorten it to AD/AS here…) legislation being passed.  In this post I’d like to take a look at why.

It started with the whole Death Panels phenomenon.  After I wrote  Christmas Trees and Death Panels: How Fear Sets A Snare a few weeks ago, a thought kept nagging at me.  When Sarah Palin first threw out that now infamous term, she claimed that the government was planning to set up medical boards to decide whether her child with Down Syndrome would be allowed to live or not.  I initially thought it was a (pretty brilliant) piece of political misdirection and dismissed it.  (Admittedly, my opinion of politicians is at an all time low.  The bias runs deep.  If their lips are moving, I doubt it.)  Nonetheless, the claim reminded me of different accounts I’ve read over the years of the historical treatment of the physically disabled and mentally ill, and as I recalled some of those horror stories I began to wonder if there might not still be some deep psychic scars hanging around in our group subconscious.  It wouldn’t be unusual.  Deep fears based in old realities do tend to die slowly.  Could some element of genuine fear also be coloring Ms. Palin’s political ploys?  And was it an echo of that same fear that inspired such an overwhelming response in the American public?

(Who would have thought that my old fascination with mental asylums, body snatching, and medical experimentation on the terminally ill might eventually offer constructive insight into the deep, subconscious fears about disability and dying that are still active today?  Go figure.  Let that be a lesson to follow one’s passion, however odd it seems. )

In terms of their treatment at the hands of a larger society, historically the disabled have often drawn the short, shorter, and shortest straws.  Some of the accounts are heinous.  For example, in the Victorian era, in the early days of asylums and workhouses the disabled (both physically and mentally) were often segregated and abandoned in abysmal conditions; shackled in dungeons with no light, clothing, beds, or heat,  and left to languish in their own filth. In addition, because there was no meaningful legal protection, they were sometimes targeted for questionable medical experimentation by unscrupulous doctors.  Not to mention that, when it came to committing someone for mental illness, the definition of insanity was…well…insane.  Families could commit just about anyone to an asylum for reasons as simple as disobedience (in women) and unruliness (in children.)

It was a traumatic age to rank among society’s most vulnerable and, while conditions have improved dramatically in the western world over the last century (not always so rosy yet in pockets of the developing world though,) the old horror stories have nonetheless carried forward to today.  There are still families handing down tales of not-so-distant ancestors who were locked up in these places, and who doesn’t get a delicious chill running down their spine at the use of old asylums as settings in classic, horror movies?

Kings Park Psychiatric Center, New York (Building 93)

These stories from bygone days are still lurking deep in our group unconscious and contributing to the fear and stereotypes about disability and its treatment that exist today.   But up until recently I assumed those fears were dated and irrelevant.  Imagine my surprise then, to discover there are still compelling reasons for the disabled to not only fear segregation and discrimination, but possibly euthanasia as well.

After assuming that Ms. Palin’s stated fear for her son was not entirely political, I dug a little deeper.  I did a quick search using terms like disabled, fear, and assisted suicide and found this publication put out by RADAR: The Disability Network in the U.K.  It  addresses concerns about proposed legislation for assisted dying in the terminally ill and…please, let me first just say that in a media world as full of hype, spin, and misrepresentation of the facts as ours is currently, this little bulletin is a treasure.  It’s heartfelt and passionate, but still somehow manages to be respectful, and I read it a few times just to bask in that little miracle of miracles.

But aside from that, one piece of information I learned there shocked me.  It turns out the disabled have a right to worry about legislation sanctioning AD/AS.

Included in RADAR’s publication is a case study concerning a woman named Jane Campbell, diagnosed at birth with spinal muscular atrophy and not expected to survive her first year.  Best I can figure, at the time of this publication she was about forty and, in spite of extensive disability, living a dynamic, happy, satisfying life as a national advocate for the disabled.  However, during a hospitalization for severe pneumonia in 2003 she encountered an unconscious stereotype held by members of the medical staff that could potentially have proven fatal to her.  Her experience is important because it crystallizes some of the very real danger that AD/AS poses for the disabled, and I think it’s something that all of us healthy, strapping people need to consider carefully.

Evidently, while in the hospital she was approached by two different members of the medical staff overseeing her care who told her that, in the case of respiratory failure, they assumed she wouldn’t want to be resuscitated with a ventilator.  She was at first surprised, and then alarmed, because they didn’t seem to believe her when she insisted that, no, she wanted to continue to live very much, even on a ventilator.  Her husband eventually had to race home and collect photos and other factual evidence to convince them that in spite of her disability, she did indeed enjoy a very high quality of life.  Unlike an equally young but non-disabled patient, Jane found herself in the position of needing to prove that she still had every reason to want to live.

I imagine it was terrifying for her.  Medical personnel often have to make tough calls that influence whether a patient will survive a crisis, and if they believe that the patient doesn’t want to survive it will almost certainly influence their decisions.  Jane was confronted with medical professionals who, because of unexamined stereotypes about her quality of life, automatically assumed that she’d prefer to die.  More frightening for her was the fact that these stereotypes acted upon them so powerfully they continued to doubt her, even after she initially told them it wasn’t true.

Now some might suspect Jane was projecting her own fears onto the staff.  I might have too, except that I instantly recognized the kind of situation described because I was in it once myself, only I was on the medical side.  When Maggie, a woman who’d been left as a quadriplegic by polio sixty years earlier, was first referred to our hospice with terminal cancer, I was laboring under the same flawed assumption that she must be relieved.  When I first entered her home I thought surely she must be looking forward to her long suffering coming to an end.

Nothing could have been farther from the truth.

I found a woman devastated by the news.  She loved her life and for good reason.  Surrounded by a devoted, supportive husband, children she loved, grandchildren she adored, and a wide network of extended family and friends, she had at various times produced an educational TV show and managed a branch of the state tax commission for more than a decade.  She was sharp, beautiful, disciplined, optimistic, graceful, and dynamic…and she was not, I repeat not, ready to die.

It was a real eye opener for me.  The reason stereotypes are so damn successful is because, without any real life experience to refute them, they feel true.  It isn’t until one finally runs aground on the rocks of some contrary evidence that they crack open, revealing the blind assumptions they’re based on and allowing us to finally begin to question them.  Maggie was the rock that split my hull.  She was severely disabled but, where her desire to live was concerned, that was totally irrelevant.  While her husband told me after she died that of course she was relieved to escape the limitations placed on her body, that in no way translated into meaning that she wanted to die. Evidently, wanting to be free of a disability and wanting to be free of  life are not the same thing.

Go figure.

Now, an important question to ask is, does any of this really matter to those of us who are not disabled?  Clearly, this stereotype is potentially dangerous for someone who is but for someone who’s not, other than arousing our deep humanitarian instincts, is it pertinent?  Will it ever affect us?  Do we have any skin in this game?

You bet.

Here’s an important point to keep in mind; eventually anyone who doesn’t die instantly is going to experience what it’s like to be disabled. Because the dying are a subset of the disabled. When we begin our final journey we all enter the world of steadily decreasing ability and, to varying degrees and for however long it lasts, we each get to feel what it’s like to become helpless, dependent, weakened, and vulnerable.  And when that happens all those non-pertinent stereotypes about disability flapping around are going to catch our scent and come circling, and you better believe they’ll influence the people making critical decisions for our lives.  It won’t matter which side of the AD/AS argument any one of us falls on, whether we’ll be among those who want to live but, like Jane and Maggie, are cared for by people who don’t believe us, or whether we’ll be among those who want to die but who are cared for by people who think we’re no longer competent to decide.  Either way, left unaddressed any stereotypes about disability will almost certainly wield power over our self sovereignty.

Now you might think that this alone is a good enough reason to look more closely at the actual wording of any given legislation for AD/AS, and to have some in-depth, follow-up discussion.  But Wait! (I say like an infomercial for a new, blender/chopper/shredder/slicer kitchen appliance that one just can’t live without…) There’s more!

But…it’ll have to wait until another post.  I’ve already gone way too long already.  Next Friday, I’d like to take a look at the possibility that the blind assumption the disabled don’t have any real quality of life may also be a prime factor influencing why some people choose assisted dying/assisted suicide in the first place.

copyright 2010 Dia Osborn

Let’s Have a Chat

Posted by Dia in Uncategorized and tagged with , , , , ,

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

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

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

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

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

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

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

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

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

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

copyright 2010 Dia Osborn

Christmas Trees and Death Panels: How Fear Sets A Snare

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

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

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

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

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

The survivors each have to make a choice.

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

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

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

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

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

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

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

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

We persistently and adamantly refuse to talk about dying.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

copyright 2010 Dia Osborn

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