How to talk with someone who’s dying.

There’s an extraordinary video blog I’ve been following for a while which chronicles the cancer adventures of a man named David and it’s been heartening to me, watching someone talk so freely and openly about what it’s like to face the realities of catastrophic illness and the possibility of impending death.  David is very engaging.

I was a little late to his most recent post (posted back in June) but it appears that after a glorious period of remission his cancer is back, with a vengeance, and the prospect of impending death has now turned into the certainty of it.  This video addresses the various thoughts coming up for him around the sudden turn of events.

I HIGHLY RECOMMEND WATCHING THIS for anyone who’s ever wondered what in the world they’re supposed to say to someone who’s dying.

It’s about ten minutes long and worth every second.  David covers what it feels like to have people tell him that he still looks great, or talk about/plan future events that he’s not likely to share in, or in other ways try to skirt or deny his new dawning reality and place him in a position of having to pretend like everything’s still okay.

Then…and this is the extraordinary part for me…he talks about what it’s really like living in the constant awareness that everything he’s now experiencing is probably for the last time.  How in some moments he experiences great fear of the passage to come and how at other times the world around him is highlighted with an exquisite, poignant beauty that’s both heartbreaking and luminous.

These are the kinds of things that all dying people think about but usually find it difficult to share.  David is brave and articulate enough to step up to the plate and actually tell you about it.  I warmly invite you to take advantage of this rare opportunity and learn from him.  It’ll hopefully help make your next encounter with someone who’s dying more nourishing and comfortable for you both.

UPDATE: The hubster pointed out that, in spite of the promise in this post’s title, neither David nor I gave any explicit instructions about how to talk to someone who’s dying.  (It wasn’t David’s intention in the first place and I…well, I just dropped the ball.)  To remedy the lapse:

In a nutshell, don’t run, don’t deny, don’t deflect.  Instead, listen carefully to what they’re trying to tell you, let it in, then follow their lead….as best you can of course.  There’s always a learning curve so be patient with yourself.

That approach usually opens up whole new worlds.  –Editor

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Five Major Influences That Help Determine Our Acceptance Or Fear Of Dying and Death

Vitruvian Macrocosm

Anyone who’s been following this blog for a while knows that I don’t believe dying and death need to look as terrifying, crippling, or hopeless as they’re so often portrayed in American media and culture.  (Dying and death are two completely different things by the way. I wrote about the difference in the post Dying Is Still Alive a while back but it’s important enough to mention again here.)  In the U.S. we live in a profoundly death-averse culture that has not only stripped out most of the beauty, grace, and strength involved, it’s taken the innate sadness, loss, and suffering of the dying process and blown them up a hundred times bigger than they already were.

Which is a common function of denial.

I’m deeply concerned by the pervasiveness of this bloated kind of fear.  Partly because of the driving role it plays in the unsustainable costs of our health care system, but more because of how much harm it does to people in their everyday lives, a harm that a lot of people don’t even realize is there.  Living with the kind of chronic, low grade terror that comes when one doubts they’ll be able to handle dying when it arrives, is very hard on a person’s basic sense of security in life.  It’s like trying to enjoy a journey down a magnificent river when you know there’s a Class 5 rapids up ahead somewhere (nobody knows the exact location) that’s gonna beat the shit out of you when you get there because you lack the knowledge and skills to navigate it successfully.  Under those circumstances who can relax for very long?

Part of what I’ve wanted to do with this blog is to try and counter some of the negative effects of this pervasive, cultural aversion we have.  To try and rebuild…by talking about the particulars of dying in a normal, unafraid kind of way…some awareness of, and confidence in, the native abilities we were all born with that help when the time comes.  It’s never been my intention to try and eliminate the fear of dying completely because, frankly, I don’t think that’s wise.  Some fear of dying is actually helpful and necessary if we plan to survive for very long as a species.

But I do want to try and ease some of the excess, buried terror I so often glimpse in the back of people’s eyes, to see if I can’t offer something that might help shrink that part of it back down to a size they can live with.  Happily.  Safely.  Confidently.  With an abundance of hope and optimism about their own dying time, whenever it comes.

Pipe dream?  I honestly don’t think so.  There are some practical steps people can take to ease their fear, if they ever want to.  What I’d like to do with the next few posts is talk about five of the things that have a big influence on whether a person is more likely to accept or fear dying, and then identify which ones we have some control over, and what we can do to try and change them if need be.

Five Major Influences That Determine Whether We Accept or Fear Dying and Death:

Influence Number One:  The quality of our first exposures to dying and death.  This includes things like, a) How old we were when we first encountered it, b) How old the person dying was when we lost them, c) How close our relationship was with the person dying, and d) The nature and graphic details of the dying and/or deaths that we witnessed.

Influence Number Two: The attitude towards dying and death of those who taught us about it.  If they were afraid of it, we probably learned to fear it, too.  If they couldn’t, wouldn’t, or didn’t know how to talk about it, we probably learned that it’s a taboo topic to be feared and avoided.  If they were unfamiliar with, but curious about it, we were more likely to feel safe thinking about it and exploring it ourselves.  And if they were familiar and at peace with it, then chances are higher that we’d become familiar with it and learn to accept it, too.

Influence Number Three: How much and what kind of knowledge we have about the details of dying and death.  The less we know about it, the greater the likelihood of fear due to the unknown factor.  However, partial knowledge can be even worse. If we know a lot about the difficult aspects of dying but nothing about the beautiful side, there’s likely to be some additional irrational terror on top of our fear of the remaining unknown.  But if we know both the difficult and beautiful details about it, we’re far more likely to harness a courageous view of dying, as well as make a plan for navigating our own when the time comes.

Influence Number Four:  Our level of practical familiarity with dying and death.  I’m talking about hands-on, in-the-room experience here as versus just philosophical knowledge.  An increased familiarity with, and tolerance of, the nitty gritty, physical details involved is usually helpful where easing fear is concerned.  But only as long as the quality of the dying and death being experienced is good.  When the dying process swings the other way and is out of control, hopeless, violent, or otherwise horrible, then it’s more likely to just confirm our worst fears.  A bad death is not a great situation for novices, but of course sometimes that just can’t be helped.  See Number One above.

Influence Number Five:  What meaning we assign to dying and death.  This influence is perhaps the greatest of them all.  The meanings we weave are completely unique to each person and will usually be a product of the accumulated experience from the previous four influences.  It’s important to remember that this one is constantly evolving, and that it can (and probably will) swing back and forth between a negative and positive view over time.  It’s very heavily influenced by the quality of the deaths it’s exposed to (including movie deaths, news stories of deaths, etc.) The greater the frequency of good deaths that we hear about, witness, or participate in, the more positive our meaning about death is likely to become.  And vice versa.  I believe a person’s aggregate exposure to good deaths vs. bad deaths is the strongest indicator of whether a person will view dying and death in a positive or negative light.  I believe this exposure is an even stronger indicator than a person’s religious or philosophical beliefs.

(This is why I feel that striving for a good death might almost be considered a social responsibility.  Not only because it’s absolutely in our own best interests to die a good death, but because the legacy of a bad death is so powerful and lingering that it can sometimes harm, cripple, or even destroy the individual lives left in its wake.  I’ve seen the influence of both good and bad deaths first hand and I assure you, the difference for survivors is profound.)

In the next post I’d like to discuss how our early exposure to dying and death plays a big role in shaping our view (for better or worse), but how a subsequent brush can shift or change it again.  I’ll share a few stories that I think might be interesting.

copyright Dia Osborn 2012

Buoyancy, A Curious Japanese Ritual, and Admitting Confusion

IMDb

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

The poor dear.  I owe her big time.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s made us a little schizophrenic.

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

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

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

copyright 2011 Dia Osborn

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

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

Agoraphobia, Sea Legs, and Life with the Red Pill

Taken by the hubster on the Maine coast

Intense cold is scary to me, but then so many things are.  Over the last couple of decades, one of agoraphobia’s many little gifts has been to heighten my awareness of much of the danger out there that I never would have noticed before.

It’s made me conscious (sometimes paralyzingly so) of how unbelievably fragile all this is.

Before the fear came I used to live in a luxurious world where I could still take what I have and love for granted by just assuming that everything would last.  But that sense of safety is long gone.  In it’s place came the (existential and largely useless) knowledge that every breath, every desire, every heartbeat, every moment of touch or warmth or joy is actually teetering on a razor’s edge above a chasm of eventual loss, and the sheer size of the realization started causing a kind of perpetual, emotional vertigo.

On the inside I started dropping to the ground, squeezing my eyes shut, and white-knuckling onto anything that felt even remotely stable.  On the outside it became increasingly difficult to leave the house.  Needless to say, the change wreaked some widespread havoc on my daily routines and commitments, but life has a way of incorporating even the more difficult things and, with enough time and practice, I eventually began to get the hang of the swings.

On our recent trip up to the cabin during a winter storm and cold snap, as usual, I was obsessively clear on how vulnerable we were.  There the hubster and I were, driving along through the mountains, nothing but the thin walls of the car and a working engine standing between us and exposure, hypothermia, or worse.  I was acutely aware of what a flimsy, fragile bubble it was, carrying us along through a hundred miles of frigid landscape, and in all honesty even once we got up to the cabin I didn’t feel that much more secure.

All the necessities were laid in of course (because being afraid all the time makes one a stellar planner.)  We had water, food, firewood, tools and supplies, warm clothing, everything we needed to secure our survival.  But even so I knew that if something went wrong, something as simple as a power outage coupled with a broken window during a storm, a whoops! moment with the axe, a snowshoeing misstep, or some bad food, things could get complicated in a hurry.

Ordinarily, there’s a fantastic and really helpful illusion that says, given enough effort and planning and control, life can somehow be made secure.  Unfortunately, I can’t access that illusion any more. 

(Why oh why didn’t I take the blue pill?)


While even I know that some activities are less dangerous than others, still, I can’t shake the reality that there will never be such a thing as completely harm-proof or hurt-proof or loss-proof or safe.

Knowing this mostly scares the bejeezus out of me and make me want to withdraw.  But then I remember this quote from Helen Keller:

Security is mostly a superstition. It does not exist in nature…Avoiding danger is not safer in the long run than outright exposure. Life is either a daring adventure, or nothing.

Life is either a daring adventure, or nothing.  I love that.  I love that Helen Keller said it, this other woman who also lived with a challenge that made it harder to navigate life.  It’s like a mantra that helps me find a way out of the holes I fall into, a rope tied around my waist so I can never completely disappear.  Living with the perennial tug of agoraphobia as I do, it’s so easy to get sucked down into the creeping paralysis of chronic fear again, to wind up curled in a ball back in the bedroom, or frozen for hours at the front door just staring at the handle.

It just seems so weird sometimes, how somebody as naturally adventurous as I am could wind up grappling with such an odd and opposite kind of illness.

For me, learning how to live with chronic fear has felt like learning how to live on a schooner.  It’s different from living on land.  The surface beneath my feet heaves and plunges and rolls now in a way it never did before, and I’ve had to develop my sea legs in order to keep from being tossed off and battered and drowned.  But over time I’ve gotten better at the shifting balance, learned how to read a horizon that’s constantly rising and falling, rhythmic and grinding, as the level of my daily fear ebbs and flows.  Gotten better at reminding myself every day, every hour…every minute sometimes…to try to relax and just roll with it.  To take a deep breath, then stand up next to my fear and hang onto it’s hand for dear life, rather than letting it run around crazy consuming everything I love.

I’ve gotten better (while I’m oh-so busily preparing for the the end of the world) at remembering, oh yeah!  Of course it’s terrifying.  Life is a daring adventure or nothing.

Which makes it a little easier, each time, to face forward, lean into the wind, and let myself either fall or fly.

copyright 2010 Dia Osborn

Sy the Stomach

I saw a stomach the size of an overstuffed sofa cushion lying by the side of the road the other day.  Literally.  And it wasn’t alone.  It had a partially eaten liver on one side of it and a long, flattened tube of intestinal tract trailing off towards the middle of the road like it was trying to crawl away.  Nothing else though.  No legs or body or head, hair, skin or anything.  Not even blood stains.  It looked so displaced.

I realized immediately that it was, to use the hunting vernacular, a gut pile.

I’ve heard of such a thing but, not being a hunter, never seen one.  It was the entrails of somebody’s freshly killed and dressed deer.  Usually these are left out in the field and I’m not sure why this one was plopped down on the side of a very public, albeit dirt, road.  But there it was, just sitting there.  Nonchalant and relaxed.  Looking for all the world like a great round, hairless hitchhiker slouching against the bank between rides.

I was upset.  At first, I thought it was because somebody might have shot the deer from their car.  This is an unfair practice and a big no no.  Then I thought it was because they left a gut pile right on the road which (I think but am not certain) may also be a no no.  (I’m very rule conscious and tend to ruffle and quiver when they’re not followed, especially where killing is concerned.)  But looking back now, I think I was mostly upset because a big, beautiful deer had just died and the evidence of its death was graphic and shocking.  It took me by surprise and knocked me off center.  I wasn’t prepared for it.

I was just out for a hike.

You’d think that in my preoccupation with all things dying, I couldn’t ask for a better topic than hunting, and it’s true.  It has everything to recommend it, from the complex, physiological processes involved, to the ethical considerations that so endlessly fascinate me, to its profound and shaping influence on each and every person engaging in it.  Even so, I don’t want to talk about hunting today.  People tend to react very strongly to that subject, one way or another, and right now I feel like the controversy would swamp me.

I just want to remember that stomach.

Two crows were on the pile when we were first drove around the bend but they flew away as soon as they saw the car.  I was with a friend and we stopped briefly while I got out to investigate.  Even upset I was mesmerized, because other than the displacement it looked absolutely perfect.  Round, intact, smooth as a baby’s skin.  There was an intricate web of capillaries tattooing the surface like some kind of primeval artwork.  It was still fresh.  There was no smell yet and aside from the liver, no evidence of wildlife depredation.  The stomach looked achingly exposed and yet…a little jaunty.  Like it was enjoying it’s day out.

I named it in my mind, Sy, then said sorry buddy and climbed back in the car to drive on to the hiking trail.

Hours later on our way back down the mountain we’d both forgotten about it so it took us by surprise all over again, when we drove around the bend and saw three or four crows and an eagle lifting off of it and flying into the trees.  Sy was fast turning into the Monday buffet and there was something really comforting about that.  The Cycle Of Things is always comforting to me.  We stopped again and I admired him one last time before we headed home.

And I’ve wondered ever since; why is it that the sight of a single stomach by the side of the road impacted me so much more than the sight of all the constant roadkill I see scattered along the highways and byways of this country?  I mean, it’s not like any of us are strangers to seeing gruesome, shocking examples of violent death on a regular basis.  With our national infatuation with the automobile, smeared animals are about as American as apple pie.

In fact, most of us who drive for any length of time will ourselves kill animals that way.  Perhaps, if it’s one that’s either meaningful to us (like a dog) or big enough (like a deer or a cow) we’ll have to stop and do something about it.  But otherwise we’ll just bump, thump, and  drive on, leaving it behind us fluttering or trembling or limp, helpless or suffering or dead.  Most of us will feel a little bit bad (none of us wants to hurt these critters) but essentially absolved.  These accidents are just part of the price we pay (excuse me…we?) for mobility, our own domestic type of widespread, collateral damage.

It’s not the fact of all this graphic, useless dying and death that eats at me.  It’s not.  I don’t have a problem with the fact that everything dies (although I’m forever interested in improving the quality of the experience.)

No.  What gets under my skin is our pervasive denial about it.  We argue over the ethics of hunting or vegetarianism or industrial farming or habitat loss like we really care, but then we watch a finch bounce off our fender or a raccoon lumber under our tires and barely slow down.  Or we pick up a package of ribs or ground beef, pop a chicken nugget or fish sandwich into our mouths, and don’t even think to connect it to the beautiful, sentient beings that gave up their lives so we could be nourished.

We don’t cast back in our minds for a moment, and remember them alive.  That makes me sad, even though I do it, too.

I wonder what the world would be like if we quit trying to hide, pretend, and compartmentalize about all the dying and killing so much, and just willingly received it instead.  Each time.  Opened our hands, bowed our heads, and said I’m so terribly sorry…and by the way thank you so much. I think it might change us all in big ways, and quickly, if we let ourselves recognize and care about every last, small death we’re personally involved in as much as we care about the big trends.

I wonder if we’d wake up, really see the world around us, and and maybe ache more but also fall a little more in love with life each time.

Here’s a blog post and comments from Going Gently with a beautiful example of compassionate culling.  John raises (and rescues!) a bewildering array of poultry and other animals for both farming purposes and pets.  And as anyone who does this for long quickly discovers, dying and killing are an inevitable part of the project.  A while back he rescued a few chickens that, in the process of being selectively bred for meat, had become so deformed they could no longer survive very long in a natural state.  He took them on as pets and let’s them free range and, not only have they survived longer than expected, they’ve even started laying eggs, something he hadn’t anticipated.  This post tells the story of one who finally succumbed to the inevitable fate of her breeding.         

copyright 2010 Dia Osborn

A Parrot’s Grief


We once had two dogs.  They joined the family two years apart, lived most of their lives together frisky and inseparable, then died at the end, also two years apart.  Our big guy died first.  Swift and unexpected.  He was fine and healthy for years and years, and then one day got sick and three days later died.  Just like that.

Our second dog was lost without him.  For a month following his death she withdrew.  She’d still come to us if we called and try to look happy to see us, but as soon as her duty was done she’d slip away to the corner where they used to sleep together and lie down again, eyes open and unfocused and numb.

We were heartbroken for her and heartbroken for ourselves.  We all missed him terribly.

But time worked its magic and one day, for no particular reason, she returned.  She followed me around the house that morning, trying to flip my hand up on her head with her nose again, and my heart eased knowing she’d be okay.  We had two more wonderful years together before she, too, eventually died.

There’s a lot of controversy on whether animals experience emotions, but the suggestion that they can’t feel things like simple grief makes me angry.  I usually try to respect the beliefs of others but, because this particular belief is so often used as a justification for exploitation, neglect, or abuse, I don’t respect it.  I find it suspect.  The claim is far too riddled with conflicts of interest to take at face value.  Besides, in five decades of living, every interaction I’ve personally had with animals and birds, (and reptile, fish, and even a few insects believe it or not) has confirmed that these other strange and wonderful companions I share my world with feel a great deal, even if most of the time I don’t understand what exactly that is.

A case in point:

One of my first hospice patients had a parrot she said she’d smuggled over the border from Mexico twenty years earlier.  She was a wild, untamed kind of woman and her parrot was just like her.

I don’t remember now what kind he was, but he was smallish, maybe a little bigger than Snowball the dancing cockatoo, and he spent most of his time in those final days perched on the valance above the window next to her bed.  I was a little nervous at first because family members warned me that sometimes he flew down on people, swooping at them again and again, testing to see if they would duck and run.  He was a fierce little thing, tolerating only a handful of people and attacking the rest, but he clearly loved and needed that woman lying on the bed and was made achingly vulnerable by her approaching loss.

He never flew down on me.  I used to speak to him gently when I was on that side of the bed, changing her sheets or dressing or incontinence pad, and he’d closely monitor everything I did, anxious and curious, sometimes fluffing up into a ball of down and shaking his head rapidly, raising his wings for a moment like he just couldn’t stand the uncertainty anymore, then settling back down to watch and wait again anyway.  He’d sidle back and forth along the length of the valance, first to the left, then to the right, over and over again like a loved one pacing the corridors of a hospital.  He knew something was wrong and it seemed to fill him with unease.

Once I saw him fly down to the bed while I was in and out of the room, doing laundry.  She was asleep and he seemed to want to just be next to her, to touch her.  He awkwardly waddled up next to her head, curling into the warmth still emanating from her.  He bent his head over next to her mouth as though checking for breath and just stayed there for a long time, frozen, his feathers brushing her lips.  My heart broke for him and I wanted to pick him up, cradle and croon to him, but I knew he’d bite me if I so much as extended my hand.

First her sister told me and then her daughter.  How he wept on her body when she died.  He flew down from the valance to her chest and started nuzzling and nipping at her, trying to make her respond.  Stroke him.  Yell at him.  Anything.  But when she didn’t move he went still and stunned, and it was then that he started making the strange, small noises, noises unlike anything they’d ever heard him make before, like sobs.  His head bobbed slowly up and down to the rhythm of the sounds, and her family just stood there around the bed, surprised and stricken by his grief.

Later, when the men from the funeral home came to remove her body from the room he attacked them.  Viciously.  Angry and hysterical, he dive bombed at their heads repeatedly until one of the men ran  in the bathroom to hide.  The family finally captured him and put him in his cage while they took her body away.

I’ve often thought about him over the years and hoped that he eventually found someone else he could trust, someone he’d allow to love him, to bring him back in healing and wholeness.

Like just about every other person I’ve ever known, the deep emotional bonds I’ve shared with animals over the years have provided me with a well of strength, beauty, unconditional love, and hope.  My ties to these companions have helped shape me, often healed me, and even saved me, more times than I can count.  I really, really hope that some day soon we’ll grow past the economic and scientific need we have to deny the depth of their vulnerability to us, and instead forge a higher, kinder relationship based on mutual respect.  They’ve already given us all so much.  They deserve something far better than what they’ve gotten in return.

copyright 2010 Dia Osborn

Christmas Trees and Death Panels: How Fear Sets A Snare

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

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

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

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

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

The survivors each have to make a choice.

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

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

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

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

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

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

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

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

We persistently and adamantly refuse to talk about dying.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

copyright 2010 Dia Osborn

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

You’re Not Dying ‘Til We Say You Are

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

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

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

It’s really quite brilliant.

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

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

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

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

And on a strategic, fiscal level,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

copyright 2010 Dia Osborn