Tag Archives: Talking about dying

Last Week’s Poll and Do Children Know When They’re Dying?

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

First of all, the answer to the question posed in the previous post’s poll is Shit.  Feels a little anti-climactic now, no?  Although I assure you, at the time when I first spoke it aloud, the word was volcanic.  As the most forbidden term in my universe, lettin’ her rip like that tore a hole in the time/space continuum of my life that has never entirely closed again.

Such is the power of language.

And now, for a dramatic subject change (place hands firmly on each side and hold onto heads please) I ran across an interesting article after Googling the search term “do children know when they’re going to die.”  The title of the piece is When A Child Is Dying and it’s written by a couple of M.D.’s working in children’s palliative care over at the Children’s Hospital of Wisconsin.

As one would expect with this topic, it’s a powerful, heartbreaking, and inspiring article, discussing both the keen awareness children tend to have of what’s really going on, as well as the higher stakes and corresponding desperation that so often comes to bear on adult decision making in these situations.  Obviously, the two doctors who wrote the article are strong advocates for delivering better palliative care in cases where children are at end-stage, but evidently it can be an uphill battle as quality-of-life issues for the child vie with the powerful parental instinct to fight for life.

Read it if you dare.  It highlights yet another area where 1) our collective commitment to denial about death can wreak some serious havoc if we don’t get out in front of it early, and 2) the huge and beautiful difference it can make for those we love most if we only screw up our courage and face it anyway.

One of the most helpful insights I gained while working with hospice had to do with a rather large, unexamined assumption I’d been laboring under most of my life; namely, that dying = something going wrong.  (Not surprising considering that most of our medical language reinforces the perspective.  Heart failure.  Organ collapse.  Failure to thrive.  Losing the battle.  Disease is the enemy.  War on cancer, etc.)

However, after hanging around with the dying for a while and studying the dynamics first hand, a new and startling perspective presented itself and knocked my world off-tilt.  I’m not entirely sure how it happened but as I watched one person after another…one circle of loved ones after another…migrate across the sweeping terrain of the dying season, the basic, cyclical nature of life began to show itself more clearly, and as it did the word “wrong” was gradually replaced with something else.

What was happening to these people wasn’t wrong so much as it was just time.  Their time.  Like someday it will be my time.  And your time.  And everyone’s time.  (And every thing’s time for that matter.  Nothing lasts forever in a physical world.)   And as this new awareness grew on me I turned to the obvious, bewildering question: why in the world had I been believing, however subconsciously, that people shouldn’t die?  Or that there was something wrong happening when they did?  Where did that expectation come from anyway?

I quickly realized it’s because of how it feels–because of the huge losses involved and the devastating hole it tends to leave behind.  Nine times out of ten, dying is a seriously hard physiological process to go through, and trying to recover after losing someone you love isn’t much better.  The whole thing feels bad.  Really bad.  And because nobody wants to feel that way, it’s easy to mistake the badness of the feeling for something going wrong.

I admit, it sounds really strange to say that Yes, absolutely, dying is horrible and undignified and primal and full of suffering and loss and destruction…but hey!  At least nothing’s going wrong.  

It sounds insane and yet it’s true.  Life is so weird sometimes.

But even accepting all that, it feels most wrong when a child dies.  It just does.  That magnitude of loss violates every screaming, primal, dangerous, protective, cornered instinct lacing our genes and honestly, I’m not sure if a rational perspective has any value at that point.  Does it?  I’m pretty sure I’d rip the throat out of anyone who tried to tell me nothing was going wrong if it was my child dying.

And yet…and yet.  That doesn’t mean it’s not still true.  Hmmm.  Y’know, I think ultimately…if I was going through the loss of a child myself…I would rather be surrounded by people who accepted the inevitability of dying, were no longer afraid of it, and had learned how to navigate it gracefully.  It seems like they’d be the ones most likely to offer the compassion, strength, and acceptance needed, rather than feeling conflicted, not knowing what to do, and turning their faces away in horror or outrage instead.

I guess that’s why stories like the one in When A Child Is Dying move me the way they do.  I LOVE that these people are out there; the doctors and nurses and volunteers and social workers and chaplains and counselors and all the other staff working in palliative and hospice care, all trying to oh-so-gingerly raise our awareness in order to try and lift some of our burden.  I’m grateful that they continue to wade willingly and skillfully into the darker waters of our lives every day.

They know that dying can be something better than most people currently believe.

copyright Dia Osborn 2012

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

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

(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 VI: Advance Directives: Mine

Posted by Dia in Advance Directives and tagged with , , , , , , , ,

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

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

Just kidding.

(Not really.)

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

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

Jared Alexander on Hazard Creek in Idaho

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

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

And now, specifics.

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

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

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

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

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

Please kiss me and let me go, my darlings.

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

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

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

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

Pass.

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

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

(Next: Part VII: Advance Directives: Ours)

copyright Dia Osborn 2012

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

Posted by Dia in Advance Directives and tagged with , , , , , ,

From The Arabian Nights by Maxfield Parrish

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

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

1)  NOT ALL FORMS ARE CREATED EQUAL.

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

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

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

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

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

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

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

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

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

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

We totally have each other’s backs.

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

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

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

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

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

Unfortunately, that’s not possible.

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

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

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

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

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

So far, so good.

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

(Next: Part VI: Advance Directives: Mine)

copyright Dia Osborn 2011


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

Posted by Dia in Advance Directives and tagged with , , ,

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

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

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

A couple of pioneering ancestors of mine.

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

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

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

ONLINE REGISTRIES FOR ADVANCE DIRECTIVES

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

1)  Make hard copies and hand them out.

2)  File them with an online registry, and

3)  Some blend of the above two.

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

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

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

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

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

Hard Copies Vs. Online Registries

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

copyright Dia Osborn 2011

Quick Note: Another Great Resource for Advance Directives

Posted by Dia in Advance Directives and tagged with ,

New resource! Thanks to Loretta over at Chrysalis who left the link in a comment on my last post about Forms and Where To Find Them.

Turns out something like a National Advance Directive Month already exists.  Only it’s a day not a month, and it’s called National Healthcare Decision Day.  You can find out more about it here.  The site is worthy of a look as it has a more comprehensive list of advance directive forms and websites than the one I compiled.  (Including a Psychiatric Advance Directive designed specifically for people dealing with a mental illness. I know, I know.  Who wants more choices!?  But there it is.)

BTW, Loretta has been working with the dying for about twenty-five years and does a great job describing some of the gifts that are also available-but-usually-overlooked at the end of life.  If you’ve got the time and interest, her website is worth a look, too.

Part III: Advance Directives: Forms and Where to Find Them

Posted by Dia in Advance Directives and tagged with , , ,

Research!

Continued from Part II: What is an Advance Directive? (Or Why I’ve Been So Confused.)

In this post I plan to go over some of the different kinds of advance directive forms that are out there, a few different options for filing them, and some of the pros and cons of each. However, before I go into the details, here are a couple insights I’ve gained during my research that help keep the the whole idea of advance directives in perspective:

1)  The majority of end-of-life decisions actually take place as a collaboration between doctor, patient, and loved ones without the use of advance care planning tools.  In other words, most of the time doctors, patients and families will work it out themselves, without the need for legal documents or government agencies.  Advance directives should be thought of more as an insurance policy against worst case scenarios, rather than the primary tool to be used for communicating with loved ones and doctors.

The situations that spring to mind where advance directives are most likely to come in handy are: 1) in accidents or other emergency situations where loved ones can’t be immediately located, 2) in cases involving younger people or the disabled, 3) in situations where the elderly don’t have any close family or friends to look after them, 4) when family is confused or in disagreement about our wishes, and 5) in nursing homes and assisted living facilities where staff members can play a role in immediate medical decisions.

Also, it bears noting there are a few sticky situations where state laws are more likely to come into play.  Assisted suicide is at top of the list of course, but a couple of states are also nervous about withholding/withdrawing artificial hydration and nutrition.  Here in Idaho for instance, the legislature recently passed a bill stating that some medical providers do not have to provide any kind of end-of-life care that violates their conscience, and it’s created a fair degree of uneasiness amongst our elders, let me tell you.  However, these cases are the exception, not the rule.  Choice at the end of life is usually an area where official agencies are loathe to meddle in family affairs.

2)  The legal forms, no matter how well written, legally binding, or universally available, aren’t of much use without having accompanying conversations with loved ones and doctors.  The best legal form in the world will never, ever, ever be an adequate substitute for talking about our wishes with our loved ones and doctors.  Ever.

I’m surprised at the number of people I’m talking to who filled out forms once upon time, somewhere, somehow, but are now not sure where they are or even what they say.  I think I understand how it happened.  Early on it was thought that just filling out the legal forms was enough.  If it’s stated and signed, then they have to, right?  Turns out not so much. Because of the complex, living, breathing, constantly changing nature of…well…life itself, we’ve learned that a lot of additional communication is actually required.  That’s where conversations with our medical proxies in particular come in.

NOTE TO SELF:  When choosing who will have my medical power of attorney, don’t just write their name down on the form and file it in a drawer.  Let them know: 1) that I picked them and 2) what I want them to do. Otherwise, they’ll be as clueless as everyone else and look foolish into the bargain.

Really.  Let’s all agree not do that to someone we love, okay?

NOW ONTO THE ADVANCE DIRECTIVES FORMS.

1)  The State Forms. 

Pros:  State forms are legally recognized by their own state and easily accessible.  In addition, here in Idaho, if we file our advanced directive with the online state registry it will be easily accessible to state-wide medical providers in an emergency because that’s the first place they’ll look for it here.  There’s are also online national registries where these forms can be registered.  (I’ll talk about registries in the next post.)

Cons:  Since the hubster travels a lot, accessibility out of state is a bigger issue for him.  We would definitely need to register him on a national database.  And if his choices include a treatment/refusal of treatment that is controversial in another state, his advanced directive is less likely to be respected. (Although that’s true for any A.D.)  Also, state forms in general tend to be less user-friendly, written more to address the concerns of the political, medical, and legal communities than the patients they’re supposed to serve.  I know on our Idaho forms, we would definitely have to write any additional thoughts and wishes we have separately and then attach them to the file.

WHERE TO FIND THEM:  There are 51 of these suckers out there. (Yep. The District of Columbia has one, too.)  A great place to find your state form is at Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO).  When I went to the website myself, along with our Idaho forms I also found helpful tips on how to fill them out as well as a link to our state registry.  The rest of the website is loaded with valuable information and resource links if you want to look around.

2)  FIVE WISHES by Aging With Dignity

This is probably the best known, privately developed advance directive.  It’s most famous for having been endorsed by Mother Teresa of Calcutta.

Pros:  Five Wishes was an early, brave effort at creating an advance directive geared towards addressing what matters to the individual rather than the state, and it provides questions for personal and spiritual issues as well as medical ones.  I actually used Five Wishes as a guide when I had a conversation with my father and his wife about their end-of-life choices a few years back and it was enormously helpful.  We all learned a lot about each other and ourselves.  It currently “substantially meets” the statutory requirements of 42 states including Idaho, so this form is another option for us.  The form is viewable online and is available in 26 languages.  They also offer a pediatric form.

Cons:  This form doesn’t meet the statutory requirements of eight states.  We also discussed this one at a hospice inservice once (eight years ago now) and the general consensus was that it would probably be best to use Five Wishes to communicate more nuanced choices with loved ones, and then fill out the state forms to satisfy the legal entities.  The form costs $5.00 but, as I mentioned above, it’s viewable online so you can look it over before you have to decide.  Also, the proceeds go to support Aging with Dignity, a non-profit (and very worthy) organization.

Editor’s note:  Paul Malley from Aging With Dignity was kind enough to contact me with important information regarding the above-mentioned recalcitrant eight states:

You mention in the pro-con section that Five Wishes does not meet the legal requirements of 8 states, which is true. I should point out that these are states that require its residents to jump through additional hoops, such as using a specific form, a mandatory disclosure notice, etc. We have many users in non-Five Wishes states and we know of no health care provider anywhere who has refused to honor Five Wishes. You should also know, if you don’t, that the federal law requires health care providers to honor ANY expression of your wishes.

I would also add that since writing this post I’ve learns things that changed my mind, and I now think Five Wishes would be a better choice than a state’s advanced directive.

I haven’t heard back yet whether or not the Five Wishes form can be registered with one of the online registries.  I’ll update this as soon as I get an answer.

UPDATE:  This form can be used with at least one national online registry.

WHERE TO FIND IT:  the Five Wishes website.

3)  Lifecare Advance Directives

This advance directive was conceived back in 1995 when a loose group of doctors/nurses/lawyers/social workers/chaplains/bioethicists/lay people started researching what, if anything, could truly and best communicate our wishes. The research involved in this project is staggering.  It’s comprehensive with a capital “C”.  Then, once they’d gathered all the information, it was assembled into an advance directive that was test-driven in a sample study.

Pros:  It works. In a study with 1000 subjects it proved more accurate in communicating what people really wanted than any of the other forms available at that time.  Lifecare also provides specific advance directives for active military personnel, citizens of the four U.S. territories, and those in federal prisons, all of whom are subject to slightly different regulations.  There’s an A.D. for those who travel internationally, too. The website also offers a wealth of guides to help in understanding the labyrinth of medical and legal choices out there (for those who love footnotes, prepare to be thrilled) and there’s just nothing else out there that compares in terms of comprehensiveness.  The researcher in me is hopelessly…hopelessly…smitten with this form. They can be downloaded online or ordered in print.  (The print versions are more expensive.)

Cons:  It’s l.o.o.o.o.n.g.  The main form is 30 pages.  It’s also more expensive than any other form.  Each directive and guide is priced separately ranging from $3.99 to $16.99, although the main form that most people would use is $7.99.

Humorous side note: The “Should I Use a Shorter Advance Directive?“ guide alone is 32 pages long with 199 footnotes.  (If you were wondering, their answer is no.)

I haven’t heard back yet whether or not the Lifecare form can be registered with one of the online registries.  I’ll update this as soon as I get an answer.

UPDATE:  This form can be used with at least one national online registry.

4)  The Protective Medical Decisions Document (PMDD) by Patients Rights Council

While some people worry most about late-stage medical overtreatment and the profound, unnecessary, and unwanted indignities it can cause, others are more concerned with the somewhat cavalier attitude toward the value of end-stage life currently making inroads in the general awareness.  I, personally, have seen tragic examples of both dynamics play out in real life and therefore share both concerns. The PMDD is specifically designed for those who are more worried about the latter problem.  It eliminates the living will entirely and offers only a Durable Power of Attorney for Health Care that is limited in one important respect: the “agent may not authorize that you be given a lethal injection or an intentional lethal drug overdose. Further, your agent may not direct that you be denied food or fluids for the purpose of causing your death by starvation or dehydration.”

Pros: This form gives someone who is strongly pro-life additional protection against the possibility of either having life-sustaining treatment withdrawn prematurely or being overdosed against their wishes.  (The latter happens more frequently than I think most people understand.)  There’s a multi-state PMDD as well as state-specific forms for those with specific statutory requirements. This form is free (a donation of $10 is requested but not required.)

Cons:  The PMDD is not available online for either viewing or ordering.  It has to be ordered by phone and delivered snail mail.  Photocopies of this form are not considered legally binding (which actually has some pros, too, see the explanation.) This means it probably wouldn’t work with an online registry, if that was even possible to begin with, which I’m still looking into.

WHERE TO FIND IT:  To obtain a PMDD packet, phone the Patients Rights Council (800-958-5678 or 740-282-3810) between 8:30am and 4:30pm (eastern time).  Be sure to designate which version of the PMDD…Multi-state or AK, AL, CA, CT, DE, FL, HI, IN, MI, MN, MO, NC, ND, NE, NH, NV, OH, OK, OR, SC, TX, VT, WV or WI…you want.  For more information about the PMDD visit the Patients Rights Council website.

5)  MyDirectives.com

MyDirectives.com is brand spanking new (just launched this month) and is a private company’s effort to overcome some of the main hurdles that keep people from completing effective advance directives.

Pros:  They’re a one-stop shop where a person can access and fill out an advance directive, and then file it with an online registry all in one place.  Judging from the informational videos on the site it looks like the A.D. itself is user-friendly and fairly complete but I couldn’t actually access any of the specific sections for a closer look without signing up first.  There’s the unique opportunity to include audio/video recordings with the advance directive, which I think is a particularly nice touch.  The website has a lot of good information (including a section on autopsy choices…I didn’t even know that was necessary.)  Probably the greatest advantage MyDirectives offers is as a central source of information.  The form is simple to fill out and keep updated online (updates are critically important) and then a personal link to the records can be provided to loved ones so they can also view the document and any changes immediately.  The registry is also available to necessary medical providers of course.  And best of all, everything is free to the consumer…the advance directive and the online registry. (the company makes its money on the back end from insurers/government agencies.)  This is a great savings.  The cost of the other two registries I looked at average about $60 for five years.

Cons:  Not only is the website new, so is the whole concept.  There are bound to be some kinks to work out along the way.  Also, since everything is done online, there is no traditional “form” that one can download and fill out by hand.  This creates a significant hurdle for elders and others who lack either computer skills or access.  And as I mentioned, there was no way to preview the document before signing up for the service.  Also, this website is brand exclusive.  You have to use their advance directive which can then only be registered with their online registry.  None of the other advance directives mentioned above will work with MyDirectives.com.

Overall, this concept is absolutely brilliant and, I believe, the wave of the future.  I’m very excited about it.  I’ll be following it to see how the website itself does in practical reality.

WHERE TO FIND IT:  At MyDirectives.com.

So far I’d say that, developmentally speaking, if the whole field of advance directives was computer technology, right now it’s at the stage where we’d just be launching the internet.  Lots and lots of different advance directives out there but very little inter-connectedness.  The good news is I think that’s about to change as tools in this field start becoming more user-friendly, connected, and efficient.

A couple years from now I’m sure I’ll look back at this post and shake my head in wonder.

Enough.  Originally, I was planning to cover online registries in this post, too, but ha ha ha.  This monster is already over 2,000 words.  So that will have to do for now.

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

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

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

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.

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

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 Effect.  It 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.

http://youtu.be/vk8puLJXuvU

copyright Dia Osborn 2012

The “They Just Won’t Die Tax”

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

And now, another one from the annals of the absurd.

This time it comes from British Columbia and involves a fee currently imposed on dying people who accidentally live too long.  Philip Wolf of The Daily News reports in his article Just Die When It’s Convenient that The Vancouver Island Health Authority demands their terminally ill decline and die on schedule like they’re supposed to.  Failure to do so will result in a penalty.  Thirty dollars a day for the bed, to be exact.

It just doesn’t get much more ridiculous than this.

Now don’t get me wrong, I understand where they’re coming from.  The hour of death is highly unpredictable, and its inability to conform to a calendar can shred the schedules and finances of everyone involved, not just agencies.  On top of that, some people who are dying while out on their own, improve dramatically once they’ve entered the hospice system and start receiving good palliative care.  And, while on the one hand that can be an undeniable and profound gift, on the other hand it definitely throws a wrench into the financial administration of their cases.  I certainly don’t envy those responsible for filling the shortfall.  Everybody hates the fact that money has any influence over something as sacred as dying, and I sure wouldn’t want to be the one to remind them.

This of course ties into the larger problem of unaffordable health care costs, for which I don’t have any answers.  And I’m certainly not going to try and propose a solution to the VIHA’s problem because, frankly, this level of absurdity may not have one.  It has coyote written all over it.

http://youtu.be/hz65AOjabtM

I suspect the VIHA’s dilemma and decision is just the natural outcome of trying to partner bureaucracy and mystery for the dance.  Of course bureaucracy will insist on leading and naturally Mystery will tease and refuse to follow.  How could this kind of pairing not get ridiculous?  Remember the brilliant parody that Monty Python did on this very subject?  I found it in a Youtube video. (At least the VIHA didn’t go with this solution.)  Here’s Bring Out Your Dead: 

copyright Dia Osborn 2011

Blip Two From The Book: A Curious Cure

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

(Still tied up with the class.  Here’s more filler until I have time to write real posts.)

“11/25/04

Thanksgiving!  I’ve got half an hour to write until the turkey goes in and true bedlam begins.

I seem to be spending most of my time with Janice these days reassuring her that, Yes.  Of course.  Just like everyone else who’s ever lived from the dawn of time, she, too, is going to die.  She’s survived so many things, so many times now, it’s gotten ridiculous and she’s starting to battle horrifying visions of immortality.  I can’t help but laugh, yet feel a wave of compassion at the same time.

Whenever she starts moaning about it I point out every sign of decline I can think of, and when I hit on something that resonates her eyes light up with hope. Yesterday, we talked about two things that have to take place before a person can finally go.  One is advanced disease in the body and the other is a surrender of sorts; a  person gradually lets go of the drive to live, the one that makes them get up day after day.  I’ve seen signs of this in Janice lately.  Since she moved to the nursing home she sleeps a lot of the time and rarely participates in any activities.  She told me yesterday there are times when she doesn’t want to eat and she even said she feels “dead” inside most of the time now, which is, of course, a classic description of the depression she doesn’t believe in and refuses to treat.

So, casting about for some way to cheer her up I mentioned, “Y’know, Janice, those things might be a sign that you’re finally surrendering.”  She perked right up.

“Really?  Do you think I’ll die after all?”

God, what a character.

She’s slowly, slowly turning in some kind of invisible womb, her head shifting gradually downward toward the birth canal, preparing for her journey through the passage that connects this world to whatever comes next.  Regular activities are losing their grip and she’s starting to drift, turning increasingly to the doorway of sleep and its other dimensions.  She tells me her daughter keeps encouraging her to take part in the facility’s activities, that she would be happier if she did.

But Janice looks at me, distraught, and says, “She just doesn’t understand.  I can’t.  I don’t feel good enough.”

It would be so hard to be ready to go, to long for it, and still be stuck here.  Day after day.  Year after year, dealing with constant pain and constant loss and constantly diminishing ability.  It’s so weird—how some people can want so desperately to live but die anyway, and how others seem to get trapped.  Wouldn’t it be great if there was some kind of cosmic barter system set up where we could trade final time with one another?

“I’ll give you three of my unwanted years for your quickie.”

“Done!”

I hope I don’t die of congestive heart failure or M.S. or Alzheimer’s, something long and protracted.  Please God, can I have cancer or something else shorter?  Not a heart attack or a car crash though…I’d like time to say my good-byes, to let Cal and Lorin and McKenna know how much I love them.  It would be unbearable to leave without being able to tell them one last time.

After we talked I drove Janice over to the bank, and while we were sitting in the drive-through she spotted a Dollar Store across the parking lot.  Boy, did her eyes light up!  I asked if she wanted to go in and she grew more excited than I’ve seen her in months.  She looked…dare I say it?  Happy.

(Everyone says that, during dying, hearing is the last thing to go.  But watching Janice yesterday I couldn’t help but wonder if perhaps, with women, it’s really our love of a great bargain.)

She couldn’t shop for very long, of course, as it was a big store with a lot of stuff.  But she stubbornly managed to drag herself…doubled over her walker and sucking strangled huffs of oxygen in a way that alarmed everyone within hearing—up and down a couple of aisles before grabbing some crackers and gasping that she was ready to go.  By the time I wrestled her back into the car she looked bloodless, ghastly, and absolutely euphoric.

“That…was so…much…fun!”   She wheezed and gazed up at me with grateful eyes from where she’d slumped to the bottom of the seat.  “I really…enjoyed…that!”

She so delights me.  This Thanksgiving I’m grateful I took Janice to the dollar store.”

copyright Dia Osborn 2011

A Blip From The Book and A Love Story That Feeds The Earth

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

I’m participating in a tele-writing workshop which runs through the middle of January so I’m transferring most of my writing attention over to the book for the next six weeks.  (A badly needed redirection I might add.  As most of you probably know, blogging can get a little addictive.)

What I thought I’d do to keep up here is post bits and pieces of whatever I’m currently working on for the book as well as (of course) any other odd and unrelated beauties I stumble over during one of my inevitable distracted periods.  Today, I have one of each:

Here’s a passage from the book that talks about what I went through after the first time I told someone they were dying:

“But even though that’s what I would have preferred, there was no time left for it.  To question slowly requires time, but what if Elsa wanted to know before it was too late?  What if she wanted me to tell her?  What if she said that to me because she saw me as a person who would be straight with her and deliver the news, bad as it was?  Someone who would help her understand what was happening and alleviate her growing confusion?  Help her back to the core and strength of who she was; a woman who preferred the truth.  Who preferred straight dealing.  Who didn’t want anyone to protect or pity her.  A woman who needed someone to respect her strength and treat her like a competent human being rather than an invalid.

There were other times, other days, when I offered slow questions.  Like the day I asked her if she knew that I worked for hospice, or the day I asked if she believed in an afterlife.  Those questions were my bait, asked with the hope of luring her into a conversation about what was happening to her, but on those days she clearly didn’t want to know.  She shrugged them off and changed the subject, letting me know she wasn’t willing to discuss it. 

And I respected that.  I wasn’t attached to her believing that she was dying.  I had no problem with her passing away in the midst of denial if that’s what she preferred.  I was a little uncomfortable when she talked about all the things she’d do when she got better, uncomfortable pretending…but not much.  If that’s what she felt like she needed then I was O.K. with it. 

After all, it was about her.  Not me.

But then that moment came and it blindsided me, when she finally wondered.  When she looked at her belly and stroked her long-fingered hands softly along the sides and said in that small, bewildered voice, “I don’t know why I’m not getting better this time.”  And for one brief, fraught moment she was clearly lost.  Vulnerable.  As if she’d thought she was traveling through familiar terrain and suddenly looked up to find herself in strange surroundings.  Pausing. Suddenly uncertain.  Puzzling softly.

“It’s never lasted this long before.”

It was a fork in the road.  A split second when she could have gone either way, back into denial or forward into truth.  For a heartbeat, a blink, a breath she was open.  Lined up.  In range.  Positioned to receive a message should one happen to come and in that brief moment the responsibility for making a choice of whether to send that message or not fell on my shoulders.

Fuck.

In the moment it seemed so simple…because I would have wanted the truth if it was me, because she had just told me how she preferred straight dealing, because that was how we had been with each other all along…I chose to tell her that it looked like it was her time to go.  That she was dying.  And because it was my choice, my responsibility, and my burden, I was required to look into her eyes and see what it means to strike a mortal blow.  To snuff out hope.  To feel her hand suddenly slip from mine and watch her fall silently away into a dark abyss, her eyes stricken, locked on mine as she grew smaller and smaller.

Is that my penance here?  Is that the asking price for dabbling around the brink of infinity?  Is it a stern reminder that I need to tread more carefully?  That grace is love, yes, but also incomprehensibly vast and unknown and terrifying?  Somewhere in the back of Elsa’s eyes I saw something looking back out at me and warning:  Be careful, Dia.  Always be careful with one another.

Was I wrong to say anything?  Should I have withheld the information and kept my mouth shut?  I don’t know.  I don’t know.

I don’t know.”

Breathe…don’t forget to breathe.

And then here is an oddly beautiful thing I found and just had to share.  It’s a video by Louis Schwartzberg called Wings of Life that “is inspired by the vanishing of one of nature’s primary pollinators, the honeybee.”  It’s absolutely breathtaking…slow motion cinematography of brief and tiny lives…and I highly recommend watching it if you’re feeling any heaviness after reading the above blip.  It’s really just all part of the same Life, y’know?

copyright Dia Osborn 2011

Do’s and Don’ts Around People Who Are Wounded And Reeling

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

L’Absinthe by Edgar Degas

I was thumbing through the journal I kept during the hospice years and came across this entry:  [Identifiers have been changed BTW.]

“Gertie was visibly shaken yesterday.  Her mom’s youngest brother, aged 94, died this past weekend and, as she stared down at the coffee table she told me, “I’m afraid she’ll go now, too.  She’s the last one you know.”   Grammy’s appetite has been off and Gertie doesn’t think she’s eating enough to survive.

She’s not.

All the other times when Grammy was going through one of her diminished-appetite spells, Gertie would worry and I would try to gently explain that loss of appetite is natural toward the end.  But she always acknowledged and dismissed the fact simultaneously.

The truth is she’s just not ready to lose her mom and I’m now beginning to suspect she never will be.  Watching her yesterday—the way she stared off into nothingness as she spoke, eyes turned inward, searching and frightened—I wondered how long she’ll survive herself, once her mother is gone.  I even wondered if she’d go first. [Gertie was 83 at the time.]  For such a strong, stubborn, tenacious woman she is remarkably fragile underneath it all.

And quite ill herself.

So yesterday I said nothing.  Didn’t ask her, “Are you ready for this?” Or say, “You know Gertie, she may be getting ready to go now.”  Of course she knows.  Shock is already starting to creep in, an early mist rising to help shield her from the unbearable loss lying just ahead.  Instead I just sat there, as still as I could.  Quiet.  Listening.  Trying to catch and contain as many of her scattering pieces as I could.

I didn’t want to move or breathe or do anything to disturb the tendrils of mist gathering around her.   She is so achingly delicate.”

As I read it all came back to me in a rush; how grieving people (and those who are catastrophically ill or dying) are sacred.  The wounding and shock caused by any kind of profound loss makes a person vulnerable; and a society’s traditional job is to close ranks around them, shielding them until they have a chance to stop reeling and reorient.  To get through the worst of it and find their footing again.

In older times this understanding of the sacredness of those in deep grief was fairly common, but I think we may have grown a little fuzzy about it since then.

Although…I do think most people still feel this sacredness instinctively.  I often see it in the awkward pause that happens after someone confides they’ve lost a loved one, or that they have a catastrophic illness.  The person receiving the news is usually aware that something huge just fell out of the sky right in front of them, but they frequently appear confused as to what they’re supposed to do about it.

So even though I frequently fail to follow these myself (they’re appropriate…not easy) here are a few of the Do’s and Don’ts about how to interact with a person who, through no fault of their own, has become temporarily sacred:

The DO’s:

1)  Do no harm.  The disorientation of the deeply wounded is the emotional equivalent of a compromised immune system.  Even if they try joking about it or brushing it off as embarrassing, remember that their shields have taken a hit and are not functioning properly.  Be gentler, be kinder, be slower, be quieter.

2)  Do acknowledge their wounding.  Go ahead and be silent for a moment, then look at them (really look at them…don’t shuffle your feet and look at anything else but) and say I’m sorry.  Then be quiet again. That’s it. This is the traditional ceremonial acknowledgement of wounding in our culture and, when genuine, it’s enough.  Even if it’s been years since their loss took place, it’s still okay to say this.  You’d be amazed how long some wounds can last.

3)  Do follow their lead.  If they feel like talking about it and you have time, then listen.  (Listening is actually one of the greatest gifts you can give.  People usually need to tell the story of what happened, or is happening, multiple times in order to coax events out of the weird, limbo world of shock and back into practical reality where they can harness and deal with it.)

On the other hand, if they don’t want to talk about it, then it’s okay to let it go.  They don’t have to.

And if, as is often the case, they don’t know what to say and stumble around awkwardly searching for words, then just be quiet and patient while they figure it out.  Let them know you’re fine with awkward. Wounded people are bewildered and need extra time. Giving it to them willingly is like encircling them with a protective charm.

Which leads us to the final Do:

4)  Do be willing to be silent.  Sometimes words just aren’t big enough and, in that case, compassionate silence says everything necessary.

Then there are The DON’Ts:

1)  Don’t give advice unless specifically asked.   Everyone has to find their own way through this one.

2)  Don’t abandon or ignore them.  Even if you feel awkward or uncertain yourself, being willing to stay anyway is worth it’s weight in gold. Wounded people already feel a little disembodied and unconnected.  Ignoring them could make this experience chronic or permanent.

3)  But Don’t rub their noses in it either.  Everyone grapples with grief and loss differently and if they prefer to deal with their emotions privately, then respect their ability to know what they need most.

4)  And finally, Don’t try to save them from their task.  You can’t…and it’s not necessary anyway.  Wounded people are vulnerable, not incompetent.  Believe in them. The journey of illness and loss is hard but it can be strangely deepening, too, and those who navigate it with courage and grace enrich us all.  It’s more than worth our while to give them whatever help they need.

copyright Dia Osborn 2011

Hmmm…An Agnostic Reports A Light While Dying

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

I recently heard a fascinating dying story.

A woman told me how her elderly mother…either a scientist or an engineer (I can’t remember now, sorry) who was hours from death, drifting in and out of consciousness and totally non-lucid even when she was conscious…began to report on what she was experiencing internally, in a disembodied kind of voice.

It seems the discipline of a lifetime dies hard.

What struck us both was that the last thing she communicated was an experience of light.  She said There’s a light.  Twice.  Which seemed surprising because her mother was a firm agnostic.

The conversation paused briefly as we mused over this.  I mentioned that I’ve heard a lot about this experience of light (of course, who hasn’t?) but the scientist hanging around in my own head, while curious, has remained unconvinced  without further evidence.  The fact that her mother was a scientist and agnostic definitely carried some weight.

To which the daughter, who seemed to share her mother’s rational sensibilities, responded that it didn’t necessarily mean anything more than that her mother was having a visual experience of light.  There’s no way to know for sure what was causing it, and certainly no way to know if it was a sign of anything else.  And I got that.  There really isn’t.

But still…it comforted me.  I mean, seriously, out of all the possible experiences I can think of having to go through during my own transition, heading for light is definitely up there in the top three.  It sure beats seeing something like monsters coming to get me, or heading for a giant buzz saw, or disappearing into a gaping, empty, black void.

Light is good.  I’m all in for light.

And…if any such light turns out to be the precursor to something more cool?  Well, even the non-committal scientist in my head grins at the thought and says, IF that’s the case, then she’s totally on board, too.

Photo by Zouavman Le Zouave at Wikpedia

copyright Dia Osborn 2011

That “thing” in the header

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

Someone has finally asked about it.  I was beginning to wonder.  It’s been up for the last…what?…nineteen months now, and just when I was concluding from the uninterrupted silence that nobody else found it as arresting as I do, Nel over at Life’s Infinite Possibilities (with stunning headers of her own btw) said…

What’s that “thing” (for lack of a better word) on your header?

Here she is in full.

I believe she was an arthropod of some kind but I can’t be more specific than that.  I found her exposed just as pictured, over on the coastline of the Olympic Peninsula three or four years ago. A seagull–or perhaps one of the many eagles that inhabit the place, I don’t know–had taken a couple bites out of her before being interrupted, maybe by the hubster and I as we meandered up the shore.

By the time I reached her side, she was still alive but mortally wounded. I found her extraordinarily beautiful…the colors so vibrant on an overcast, dreary March day that they took my breath away.  She was a tiny, dying spot of brilliance in a wild landscape of muted grays.

She also vaguely reminded me of female genitalia.  Like orchids do, only with an arthropod’s twist.  It both tickled my sense of humor and made me ache for her vulnerability all the more.

After I took the photograph I cupped her oh-so-gently in my hands, walked down to the water, and placed her right-side up again in the sea. She curled a little when she felt the stones beneath her…the cradling of the water…and I like to think she was happier there. Safer. Like the difference between dying peacefully at home, surrounded by the familiar and loved, versus upside down and alone in a car crash on the side of an anonymous interstate.

Here she is right-side up and back in the sea.

A little farther down the beach we also found a dead seal that was only beginning to decompose.

I originally planned to use this photo in the header but it never felt right.  Looking back now I think it’s because my primary focus here is on dying rather than death.  Both are profoundly beautiful to me, but with as much as I love the stars and stillness of deep night, it’s the elusive magic of twilight…that impossible alchemy that occurs as something is changing its very state of being into something else…that haunts me.  I guess that’s why I’ve always been drawn to transitional environments like coastlines and twilight hikes and storms and hospice. Because they provide portals into the strange, limbo world of transmutation where I can then observe and try to document its mechanics, firsthand.

copyright Dia Osborn 2011