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 Randomly Useful Hot Tips About Dying

(Quick note: These tips refer to dying, not death. I don’t have any hot tips for death yet. For those confused on the difference, dying is that thing we do at the end while we’re still very much alive.  –Editor)

1) Dying is as much a gift as it is a punishment.  Pick which view to invest in carefully as it will affect your entire life.

2) Accepting dying might not always make it easier when it comes, but being horrified is guaranteed to make it worse.  (Trust me on this one.)

3) Learn about dying from people who are familiar and comfortable with it.  The terrified can’t teach you much you don’t already know.

4) A “good death” is good for everyone.  A “bad death” is bad for everyone.  As a group we need to be shooting for a lot more good deaths than we are.

5) There’s some version of an afterlife/afterwards for everyone.  Pick yours and start making it work for you now.

If I don’t get distracted by another idea (a big if these days) I’ll try and elaborate on these tips in upcoming posts.  I imagine they probably need it.

copyright Dia Osborn 2013

The differing legacies of good deaths and bad ones, and an extra bonus of grace.

Good deaths have a ripple effect that go out for a long, long way, for a long, long time and, unfortunately, so do bad deaths.

I just stumbled across a blog post titled rapture? (not what you think) on Wild Celtic Rose where she describes a personal experience with each kind of death, and she manages to convey the lasting legacy of each far more eloquently than I’ve ever been able to do.  I highly recommend a read if you get a couple free minutes sometime.  (It’s not that long and you may cry from the beauty at the end.  I sure did.)

She also brushes lightly over a couple of other interesting (and loaded) topics.

The first involves the subject of respecting another person’s right to die the way they choose (and one possible cost of not respecting said right.)

The second involves the legal right we all have to forego any treatment and die if that’s what we prefer.

And the third involves that elusive, fragile, and exquisite grace that usually surfaces when faith is respected across a divide in beliefs.  She captures the spirit of this so beautifully when she says (talking about the good death):

“Sometimes we look at other beliefs with skepticism at best.

I can say that the honest, giving, loving, non-judgmental way in which Craig and Nina lived their lives is as “Christ like” as I have ever seen.

I honestly don’t know if there is a heaven or not.

Even though we are of different faiths, I thoroughly believe that if there is one, that Craig is there and he will be joined by Nina and the rest of his family.”

A beautiful expression of how we can still love and be moved by another’s faith without necessarily sharing their beliefs.

I really, really hope you have a rapturous, awakening, living-it-like-it-was your-last kind of moment sometime this week.  We should all be that lucky.

Love,

Dia

When does living stop and dying start?

This is the kind of question I understand repulses most people but for some reason fascinates me.  It’s not so much about dying…I think…as it is about transitional zones in general.  For me, they’ve always been the place where everything interesting is going on.

I ask the same kind of question when I’m lying around up in the mountains and watching the sun set…at what point does it turn from daytime into twilight and then into night?  Or standing on a beach and watching the waves roll in and out…where are the lines that define where land becomes coast becomes sea?

Where do the colors really change on a rainbow, or is there an exact moment when a marriage fails, or at what length of tail can you stop calling it a tadpole and start calling it a frog?

These kinds of questions have always struck me as important even though I’m not entirely sure why.  Maybe they give me a way to puzzle through the nature of change and the necessity for it?  Or perhaps it’s because I’m not very good with loss and transitional zones all involve losing one thing as it changes into something else?  Maybe I think about it a lot because I’m still trying to learn how to say good-bye, let go, and look forward again?

Or maybe it’s just how I was born.  I mean, really.  Who knows why any of us are fascinated by the things that we are?

But back to the original question, when exactly does dying start?

I used to unconsciously believe that it started when a doctor said that it did.  At that stomach sinking, deer-in-the-headlights moment when a person was told, “I’m sorry.  There’s nothing more we can do.”

Did anyone else think that’s when it starts?  And that everything that happens before that horrible moment…all the whirlwind of treatments and waiting and bad news and worse news and more treatments and uncertainty and all the fear…is still living?

That’s what the journey of dying looks like so often these days.  Plunging into diagnosis and treatment can be so much like being caught up and tumbled in a huge, breaking wave that scrapes you along the bottom and nearly drowns you before finally washing you up on shore, beaten, battered, and gasping…only to be told that now you’re going to die.  Honestly, thinking about it like that absolutely terrifies me. I’m not all that worried about dying but I’m petrified of being over-treated for it.

But anyway, once I started to consider the question, and once I realized what my default answer was, I started observing more closely what was going on in my work and eventually discovered a couple of things that helped reshape my answer and ease that scary feeling a lot:

1)  In hospice I learned about a thing called “active dying.”  It’s when the body starts to go through the final shut-down sequence…when you get what’s called a “cascade of organ failure.”

(For the record, I really dislike that term.  Watching a body shut down never looked like failure to me.  On the contrary, it looked like a brilliantly…BRILLIANTLY…conceived protocol designed to both protect us from further horrendous suffering, as well as extract us from a clump of physical matter that’s starting to break back down into it’s essential elements for future life.  To me, active dying looked just as miraculous and sacred and wild as birth ever did.)

The period of active dying is relatively short, lasting from a couple of days to a few hours and, in my evolving understanding anyway, became the clearest definition of when dying actually starts.

I have to admit, that conclusion really surprised me.  It turned a lot of the standard cultural view I grew up with on it’s head.  It even messed with the entire basis for referring a patient for hospice care in the first place, as they’re supposed to be dying to qualify.

And yet, it also explained something that hadn’t made sense up to that point.  When I first volunteered with hospice I thought I was going to work with “the dying.”  And yet I quickly discovered that the extraordinary people I was meeting were actually living.  Times ten.  In fact, probably more than most of the not-dying people I knew.  I quickly surmised that I’d been laboring under a misperception, but it wasn’t until I finally figured out that dying doesn’t start until the very end that the nature of that misperception became clearer.

So for me, in strictly physical terms anyway, dying starts when our bodies enter the “active dying” stage.  And everything that comes before that, no matter how turbulent or ominous or final, is still living.

So when a doctor delivers that terminal diagnosis…we’re still living.  And when we get referred for hospice care…we’re still living.  And when we start losing our appetite, energy, and bowel control and maybe can’t even get off the bed, I’ll be danged if we’re not STILL living.  Maybe in a period of uncomfortable decline which is a definite bummer, but bummers have always been a part of living, too.  So, so what?

And that was the second thing I figured out which helped ease that scary feeling.

2)  Life and death, and living and dying, are completely different things.

Life and death are nouns.  They’re things that exist as an independent fact, like cell division and tooth decay.  They’re built into the system itself so they happen to us whether we deserve them or not/want them or not/appreciate them or not.  First we’re dragged into life without any discussion and then we’re dragged back out again and, ultimately, we have zero power at either end.  Granted, that’s a little unnerving but I still find the simplicity of it appealing.  Turns out life and death are not…thank you God…something I have to try and control after all.

Living and dying on the other hand are verbs.  They’re the smaller, more manageable ways that we get to participate in these vast and fundamental forces.  Whereas we have no say whatsoever about life and death, we have enormous power over how we choose to live and die within them.  How we choose to deal with them and face them (or not.)  Depending on our inclination, we can turn either one into something meaningful, generous, and humbling or something ugly, painful, and degrading…or more likely a little of both.  We are human.

In any case, that part of it is all up to us.

Which I love a lot because I need something to control.  (As the hubster can testify.)  I will happily give up trying to control life and death as long as I have living and dying to strap into the harness instead.

So back to the original question of when exactly does dying start, over time I’ve found it most useful to think of in birthing terms of all things.  It goes kind of like this:

Life enters the world in in four stages; conception, pregnancy, labor, and delivery.  From where I’ve been standing it looks like it heads back out along the same lines.

1) Conception, for me, would be the moment when I first realize I’m officially heading for the exit.  This is it.  I’m going to die.  I think this one might be the hardest part.

2) Pregnancy would encompass most of the time I have left and would involve all the many and varied preparations required for death; wrapping up my life, finishing all the paperwork, giving and receiving any forgiveness, savoring all my “last times,” navigating all the tricks of a body in decline, saying my good-byes and thank you’s, making damn sure everyone knows how much I’ve loved them and, finally, making my peace.

3) Labor would be the briefest part and would constitute the active dying process.

4) And birth?  Well, to be honest…it’s always kind of looked like birth is happening at both ends to me.  If there’s one thing I’ve learned from studying all these different transitional zones over the years it’s that endings and beginnings are pretty much the same thing–a moment of conception.  I know there are a lot of different theories out there about what’s going to happen after death…and I think they’re all pretty interesting…but I, personally, have no idea what the exact nature of my death/birth will be…and I like it that way.  It makes it all seem like more of an adventure.

But I do know this; in all the time I spent in the rooms of “the dying” I never once saw life itself destroyed.  On the contrary, with each person’s passage I saw it becoming something more vast and measureless than I’d ever understood.

Here’s a photo I took in the Olympic rainforest that captures a little bit of that feeling for me.  The physical part of it anyway.  (Rainforests are like the transitional zone incarnate.  Changing from one thing into another is all that ever goes on in there.)  This is what’s called a “nurse log.”  It’s when one of the old giants falls to the forest floor and magically becomes a raised and fertile world for countless new seedlings to begin their tiny lives.  Nothing wasted, nothing destroyed…only transformed and renewed.

copyright Dia Osborn 2012

Dead Bodies Need Love, Too

…only I think more for our sake than theirs. 

In the last week I had two different friends tell me stories about the death of a close family member and the extraordinary experience they had with the body afterwards.  In both cases the body was handled in a way that’s unusual by American standards, yet both women told me (with deep conviction) that it made all the difference in helping them cope with the loss.

The first is a friend who’s older brother died last year of a sudden heart attack in his early sixties.  He lived and died in a different kind of community in the midwest where a lot of people practice a spiritual discipline with deep roots in the Indian Vedic tradition. Naturally, his cremation was attended with some of the chanting and ritual derived from that part of the world.  It involved an open casket viewing in a small room within the crematorium following the funeral itself.

The ceremony was beautiful, heart wrenching, and mesmerizing to watch.  My friend had a small video that was given to family members, and she shared it with me.

Only the most intimate friends and family members were allowed to attend.  Once everyone was seated a woman, who’d evidently spent a number of years in India learning how to do it, gave a brief explanation of the ceremony and then began singing what had to be one of the most beautiful, soothing, dynamic songs I’ve ever heard.  The words were in Sanskrit so I couldn’t understand any of it, but the melody, repetition, and deep resonance of the woman’s voice was like being cradled in strong arms.

All of the (many, many, many) flowers from the funeral had been brought into the room and two women were busy in a corner stripping all the petals and placing them into a basket near the head of the casket.  As the main woman sang that unearthly song, everyone in the room stood up and began to file past the body in a circle, picking up a handful of petals out of the basket each time they passed and sprinkling them over him as they whispered their final good-byes.  

At first I was just struck by the surprising beauty of the whole idea.  But then, as I watched his white face…his entire body…. vanishing beneath the deepening layers of soft, tender flower petals, I got it.  How much kinder and gentler this was, how much truer to both the profound love and profound loss of the people in that room, to bury him in flowers rather than dirt.  It took my breath away.

His mother nearly collapsed her first time around, under the unbearable weight of her grief.  But it seemed to get easier for her after that.  My friend told me that more than anyone else, the ceremony helped her mother come to grips with the loss.  Neither Friend nor any of her other family members actually lived in that community.  They’d all dropped their lives to travel from across the country, stunned and stricken.  Friend confided that initially she, herself, was reluctant to view his body, to see him like that.  She wanted to remember him as he was.  But then somehow as she watched him disappear beneath the flowers, the pain and shock of his death was transformed into something else.  Something more manageable.  Closure, she said, and her eyes looked unutterably grateful and sad.

Eventually, they all went down to the furnace and, together, rolled his body in.  But by then they were ready to let him go…which I realized was the ceremony’s intended gift.

My other friend’s loss happened at the other extreme.  She lost her elderly mother after a decade of slow, horrendous decline.  In fact, her slide had taken so long that when she finally…finally!…began actively dying it was hard to get her doctor to believe it.  In the end she was only transferred over to hospice care a scant three days before she died and this made my other friend sad.  She would have liked the extra time necessary for everyone to gather and say their good-byes, to turn their familial head downward toward the birthing canal, preparing for their transition into the next world without her.

Then she told me how they didn’t call the funeral home right away, to come and collect her mother’s body afterwards.  Instead they kept her at home for a night so she and her daughter could sleep beside the bed, one on each side, loving it through the first long, dark hours of its new state.  They called in the morning and watched her taken away in the brighter light of day.  My friend shared that, by then, she was ready to let her go and I recognized that closure thing again.  That elusive, emotional line we all have to track down inside ourselves and cross before we get to begin our ascent back up the other side.

In both these stories I was struck by the double loss we experience with the death of a loved one…how we lose both their them-ness AND their body…and how important it can be to separate the two and honor them both.  Not only as a final gesture of respect for our departed, but for our own healing as well.

first photograph: Cherry Blossom at Washington Memorial by porbital

second photograph: A Study in Pink by Maggie Smith

copyright Dia Osborn 2012

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

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

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

Snowshoeing.  With heavy packs.  Uphill.  Both ways.

Kidding.

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

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

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

(Photo courtesy of Steve Jurvetson)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

copyright Dia Osborn 2012

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

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

I had a lot of questions.

As I mentioned in my last post, the hubster and I are finally determined to get this albatross of planning out of our hair.  I know from my years working with hospice how complicated and overwhelming end-of-life scenarios can be and I realize that planning for it beforehand can make all the difference in the world.  So time to get it done.

First, the research:

Question:  WHAT IS AN ADVANCE DIRECTIVE?  Well, it’s even more complicated than I thought.  I’ve identified three different parts to the process so far: There are FORMS, what I call THE LETTER, and then the FOLLOW-UP.

THE FORMS

IN SPIRIT, an advance directive is a way of letting loved ones and medical personnel know what kind of medical treatment you would or wouldn’t want if you were unable to communicate those wishes for yourself.  The idea is to try and avoid confusion, mistakes, and extra suffering for everyone involved in either an emergency or end-of-life situation.

It’s a worthy ideal with almost universal backing.

IN PRACTICE, an advance directive is a set of actual, legal forms to fill out and this is where things start to get very confusing.

Turns out the whole concept of an advance directive is a work in progress.  The idea was originally conceived back in the 1960s as a result of the growing number of nightmarish dying scenarios taking place, but it didn’t start to take off in public awareness until the Patient Self Determination Act of 1990.  There have actually been three generations of advance directive forms developed over the years as our understanding of the need for them has evolved.  Wikipedia has an interesting article on the history, with specific references to the main forms created and what they were designed to address.  Reading it helped me understand why I’ve had so much trouble determining what paperwork we should use.

Basically, there’s a freaking cornucopia of advance directive forms to choose from out there.  Laws governing medical treatment for emergency and end-of-life care are actually generated state by state with a profound lack of coordination at the national level, so even if you fill out your own state’s advance directive, it’s kind of a crap shoot whether it’ll be honored if you get into trouble somewhere else.  Then there’s the other problem that most state directives (crafted by state bureaucrats) are too limited in scope to accomplish what we want them for in the first place.

In an attempt to address the latter issue, there have been even more advance directive forms created by national organizations that are more suited to deal with the subtler nuances involved, and while these other forms do a much better job of allowing us to communicate what we actually want, (and some of them have even been approved by some states) their legal strength has yet to be definitively proved in court. They’ll probably be honored, but there’s no guarantee.  And if you’re asking for any kind of treatment contrary to the state laws where you get into trouble, you’re shit out of luck.

Like I said, this stuff isn’t just scary, it’s confusing.

So what are WE personally going to do? 

Well, we’re going to fill out two kinds of advance directives: 1) our state form to cover our legal butts here at home and, 2) one of the other national forms that will help us better express the complexity of our wishes to our loved ones.  (We haven’t decided yet which one.  Needs more research.)  That second form is also necessary for us because the hubster travels extensively between states and there’s no way he’s going to fill out a separate advance directive for each one.  We’re hopeful that, in the particular states he visits, one of these other forms would almost certainly be respected.

(Panicking yet?  Don’t.  Whatever state you’re in and whatever forms you choose, the most important choice you’ll make is who you pick for your medical proxy; the person who communicates your wishes when you can’t.  Remember, the best paperwork in the world can be missed, misunderstood, and/or disregarded without your proxy there to back it up.  So don’t fixate on the form.  Fixate on the multiple, ongoing conversations you’re going to have with your proxy.)

To conclude this section on forms, the individual documents included in an advance directive can include a mixture of the following:

1)  Living Will* (name your treatments)

2)  Durable Power of Attorney for Health Care* (pick your proxy)

3)  Do Not Resuscitate Order** (please, please don’t)

4)  Choices for organ donation**

5)  POLST** (Physicians orders for life sustaining treatment) in states where it’s available.

*  always

** sometimes

NEXT, THE LETTER.

Even if somebody was to procrastinate and never get around to filling out the legal paperwork, they should at least craft their Letter and give it to their loved ones.  What is The Letter?  At it’s heart it’s something like a profession of faith; a declaration of belief about what makes life valuable to you.  It will lay out what you live for, believe in, and love; the particular things or circumstances that make your life worth living to you.

The medical choices we’re likely to face in catastrophic circumstances are impossible to predict, which makes it difficult to write down instructions for detailed treatment preferences. The purpose of The Letter is to instead provide a set of overarching principles that can help guide our proxy’s decision making.

For instance, one person might write as part of their Letter, I believe that my ability to think and communicate, to interact consciously with the world around me in a meaningful, nourishing way, defines who I am.  It’s what makes my life worthwhile to me.  Another might say I believe that I’m more than just my thoughts, actions, and will, that my life is valuable, sacred, and worth preserving simply because I exist.  While a third person might simply state Hey…if I can still talk and eat Chinese food then hook me up.  In any case, the Letter gives whoever has our medical power of attorney an idea of what’s most important to us, what the unique values and beliefs are that they need to consider when deciding on any given medical treatment.

Now FYI, there’s usually a place on most advanced directives where you can include something to this effect, but I personally would write it first as a separate document for two reasons:

1)  The space on the forms is really cramped, and

2)  You may want to communicate something of an intimate nature that you don’t want a bunch of strangers reading.

AND THEN LAST BUT NOT LEAST, THERE’S THE FOLLOW-UP.

So, I’ve now filled out both the legal documents and written the Letter.  Is that enough?  Am I now done?  Nope.  Not hardly.  Because…

1)  THESE FORMS AND WRITTEN STATEMENTS ARE UTTERLY USELESS IF THEY’RE NOT PUT INTO THE HANDS OF THOSE WHO WILL NEED THEM.  This seems kind of obvious but it’s surprising how many people miss this step, partially or completely.  The people who should have access to a copy include:

First and most importantly, whoever has our medical power of attorney!!

Second, our doctor and the hospital (if we’re in for some kind of procedure.)

Third, any loved ones and/or close friends who are likely to be involved.

Fourth, I’ll be keeping a copy with all our other important and legal documents.

We can hand out hard copies, let people know how to access the information through an online registry, or some mixture of the two.  There are pros and cons to each approach which I’ll cover in a later post. 

2)  ADVANCE DIRECTIVES NEED TO BE PERIODICALLY REVIEWED AND UPDATED.  Life goes on, circumstances change, people move or die, and our wishes for what we want evolve as we age.  It’s vitally important to make sure our documents reflect the changes.

3)  And last but not least, WE NEED TO TALK ABOUT IT WITH OUR LOVED ONES AND DOCTORS!!!

Personally, I think this task is probably the hardest one.  But folks, writing it down alone will never be enough.  We have to answer any questions and make sure everything’s clear, for both our sake and the ones we care about most. 

These are the people who will be our advocates when we can no longer advocate for ourselves, and if they don’t know what we want, or if they can’t prove that they know what we want, or if they can’t agree on what we want, then the risk rises we’ll be dying the way somebody else thinks we should.

And, man, would that suck.

These are also the people who will be shouldering a breathtaking burden of responsibility for our sakes, so we have a duty to protect them from any last, lingering doubts; from the painful question of wondering whether or not they did the right thing.

Next post: Advance Directives: Forms and Where To Find Them.

(The above photo is of U.S. Navy search and rescue students.)

copyright Dia Osborn 2011

Unthinkable? No, Dying Is Perfectly Thinkable.

living will

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

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

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

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

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

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

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

Which ride would you rather be on?

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

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

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

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

copyright Dia Osborn 2012

Elders and the Strange Gravitational Effect of Final Mystery

image by chrisroll

My elderly father-in-law (I’ll call him Mon Pere) is living in the light of two very different worlds right now.  In the first, he pursues everything he enjoys with great flair.  He goes out dancing with his ladylove, attends continuing education classes at the University, tells his same beloved, off-color jokes over and over again, and takes long, contemplative walks by the river every afternoon.  In the second, he lives with metastatic cancer.  Mon Pere is what’s known as a character, and he navigates both worlds with the same idiosyncratic grace.

His cancer is slow growing and if it weren’t for a preventive screening test some time ago, he wouldn’t have even known it was there until recently.  Because of his age at the time of discovery, and because the likeliest outcome of treatment would have been to erode his treasured quality of life, he declined anything aggressive and has instead lived pretty much the same life he lived before, only with the uncomfortable knowledge that a force he could neither see, feel, nor resist was relentlessly growing inside him.

This burden of helpless knowing strikes me as unnecessary and a little cruel but, as far as I can tell, Mon Pere has no regrets.  All our conversations eventually drift to the topic of how grateful he is for the life he’s led and the deep pleasure he now takes in his daily routines.  For all I know, without the useless knowledge of his cancer over the years, he might not be feeling this heightened sense of gratitude and pleasure.  Perhaps that’s what makes the added burden of fear he’s also had to live with worthwhile.

Mon Pere has been, all his life, every year, an avid traveler but that, too, is changing.  This morning he refused an invitation from the hubster to go on a fishing trip to Maine, emotionally disclosing that, these days, he longs more for the simple charms of home.  There’s a creeping pain to be dealt with and instinct is whispering it’s time to rein in the adventures.

I’m moved and fascinated by the unconscious courage he displays.  He’s unusual in that he’s always been willing to talk about his own death as well as the life he’s determined to live on the last leg of his journey there.  He’s been clear with us all that, for him, living fully is more important than living longer.  While he’s prepared to surrender to the naturally occurring indignities of dying, he’s determined to avoid any additional medically inspired ones, and so far he’s shown an uncanny instinct for sniffing out and avoiding most of the interventions that might extend-but-strip his life simultaneously.

I admit I’ve been tracking his choices closely over the years, and I’ve learned a lot from him. The truth is that, like him, we all dream of living fully until it’s time to die.  The problem is our healthcare system isn’t designed for that.  It’s not designed to allow dying at all.  It’s designed to keep everyone alive as long as medically possible and, while that’s a decided boon during the healthy years, its lopsided effort at the end is now churning up so much turbulence that a simple death has become a rare event indeed.  I’ve looked into the haunted eyes of too many surviving loved ones and seen the same regret there; They never wanted to die like that. 

Everyone agrees there’s a problem, and there are many good efforts afoot to change it, but in the meantime passing through the medical system during aging is a lot like swimming downriver into ever-increasing amounts of flotsam and jetsam.  There’s so much to get snagged on that it requires an almost impossible degree of knowledge and native cunning to navigate through it all unscathed.

But Mon Pere is doing surprisingly well.  He’s like an old trout, refusing to rise to the fluttering lures cast over him, sinking lower into the water instead.  He’s not susceptible to the whispered promise of extra time because, as he so often says, Been there, done that, bought the t-shirt.  He doesn’t have a bucket list left of things still to do because he already lived his whole life doing them.  What he craves now are the infinitely dear, small pleasures of life.  To walk and learn, laugh and dance, savoring the wonder of each new day.

This gradual slowing reminds me of the other elders I worked with and how they, too, started to bend and change under the weight of this approaching mystery.  It often seemed like they were nearing something I couldn’t see, something with an immense gravitational pull to it, as though the closer they circled in, the denser and heavier they became.

I used to think of death itself as a null and empty void…a dark nothingness, an absence-of…with physical life perched on one side and, hopefully, some kind of spiritual life on the other.  But that was before I spent time working around its edges, before I discovered the strange, luminous field this final Unknown generates.  Some have called it the light of dying, which I’ve also glimpsed, but at the very end, in those last hours before a person dies, it took on an additional dimension.  It felt like an immense current flowing through the home, as if some subtler kind of electromagnetic field was in motion.  I noticed everyone’s emotions, muscle contractions, and breath seemed to unconsciously synchronize with it, and my own response was the same each time.  My skin would tingle and hair rise, my heart would first fill with a vast ache and then suddenly contract and break in one sharp blow.  And out of the pain it would delicately unfold again like some kind of pulsing sea anemone, opening up its thousand waving tentacles to grope the passing current…for what, I still don’t know.

The experience was reassuring but disorienting, too. There were a few times after returning to my car when I had to just sit and grip the steering wheel for a while, dazed and bemused by how sharp and crystalline everything looked, as if I was gazing out through a long-smeared window that had finally been cleaned, before the strange afterglow would fade enough for me to drive safely away.

I don’t think of death as an empty void so much anymore.  I’m not sure what I think instead, I can’t make make sense out of something I’ve only glimpsed, but the thought of it makes me feel curious, calm but a little nervous, and breathless.

Mon Pere is hardly dying yet, he may not for years, but he’s slowing.  Turning.  Caught in the outermost edges of that pull now and commencing its widest spiral.  He’s a little sad sometimes, a little scared, but mostly he’s head over heels in love with his life, as he should be.  As we all should be.

This is the most amazing ride.

copyright Dia Osborn 2011

Blip 3 From The Book and Sugar Plum Fairies

Happy Thursday!  I’m actually getting Friday’s post in a day early this week.  Still working on the writing class and trying not to get distracted by the blog.  In that spirit, the following blip is from a section of the book where I describe a walk we took along an Oregon beach during some residual storm surge.  The echoes of dying are just about everywhere, if only we allow ourselves to listen.

We stayed close to the cliffs rising at the back of the beach, scanning their sides for escape routes just in case.  The litter of driftwood at their base was a wildly tossed collection of enormous pilings and giant tree trunks ripped free from prior moorings by lashing waters of extraordinary force.  The evening before they’d all rested in settled places, tumbled long ago to fit tightly along the feet of the cliffs, bone dry and sun bleached, high above the tidal reach.  But after the night’s wild surf they were tossed about and water soaked.  Embedded with wet sand.  Some of the old pieces had been picked up and scattered down the beach or washed away entirely, while other ones were only freshly arrived.

Picking our way we came across the damp carcass of a sea lion, headless and beginning to decompose.  At first I mistook her for driftwood but as we drew nearer I saw tufts of fur still clinging to her skin and I was irresistibly drawn to her.  Kneeling, I placed my hand on her side, the damp flesh still soft, giving way beneath the pressure as if she was exhaling.  I felt a mixture of wonder and horror and grief, marveling that I, Dia…woman of Idaho, of inland rivers and sweet water lakes…was touching a sea lion. I might as well have found myself next to a unicorn or griffin.  She was miraculous to me, sleek and tapering, and I ran my hands above the contours of her body, sweeping them along her back and sides, over the folds of her torn fins as if my hands were somehow remembering the deep waters gliding over them.  Endlessly, fluidly tender. 

I wished that her head was still there.  I looked at the wound and was chilled by the neat edges of severed spinal bone where someone had clearly sawed through it.  I felt agitated murmurs fluttering up from the sand around me and I shared in the distress, made uneasy by those who move easily in the darkness, desecrating the dead.  

I spoke to her gently, whispering final words of farewell and gratitude.  But then a sneaker wave rushed up, driving Cal and I onto the higher rocks behind her.  We watched as the water surrounded and lifted her, washing her back down the beach out into the waves where she swam again one last time, headless and vulnerable.  She got stuck, tossing about in the turbulent zone where ingoing and outgoing waters meet and I wished she could somehow get past the waves and return to deeper waters.  We stood helplessly as she tossed and rolled, back and forth, trapped and jostled in the limbo zone created by conflicting tides. 

But finally, when I could barely stand to watch anymore, a strange, lone ripple of current heading away from shore washed past her and for a moment it seemed like whatever was left inside her washed away, too.  I thought I glimpsed a shimmering sea lion, whole again and beautiful, swimming just beneath the surface, riding that ripple back out to sea. 

And then it was gone.

I’d like to end this post on a completely different kind of beautiful note. Here’s a video of a couple of Polish musicians playing Tchaikovsky’s Sugar Plum Fairy on the most surprising instrument.  It’s both entertaining and exquisite.  Enjoy!

copyright Dia Osborn 2011

The Film: Departures

I finally watched the Japanese film Departures last night and was astonished and blown away, both.  The 2009 Oscar winner for Best Foreign Language Film also captured thirty-four other international film awards and, in my humble opinion, deservedly so.  It took the difficult subject of “encoffining”, the ceremonial (and totally fascinating) bathing and dressing of the recently deceased which is performed in front of the family, and treated it with a lightness of touch and reverence that made it both moving and accessible.  Add in a stunning soundtrack and cinematography and no wonder it was such a hit.

I’ve caught a rabid cold from the hubster so, much as I’d love to go on and on about it, I don’t have the energy.  It’s hard to juggle a parade of soggy tissues and tea cups while trying to type so I thought I’d just leave you with the trailer for the movie.  That way you can get a flavor of it for yourself.

The one thing I will say is that this movie captured the beautiful, uplifting experience I had over and over again with the dying and their families.  It somehow managed to portray a little of everything that’s involved; the grief and joy, anger and humor, the awkwardness that so often arises in circumstances of profound intimacy, the need for forgiveness, the graphic elements involved, the enduring love, and the ultimate affirmation of life that comes when death is received with dignity and grace.  It also captures how the gifts of those who die can pass outward in a spiral, swirling back into the lives of those left behind to aid in healing their wounds, both new and old.

I give this movie two thumbs up needless to say.  Here’s the trailer:

copyright Dia Osborn 2011