Monthly Archives: February 2012

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

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

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

Giants and Freia by Arthur Rackham

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

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

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

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

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

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

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

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

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

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

copyright Dia Osborn 2011

Part VII: Advance Directives: Ours

Posted by Dia in Living and Dying and tagged with

(Continued from Part VI: Advance Directives: Mine.)

Editor’s note: Today, I decided to just write a quick post and publish it without proof reading.  It may be the only way to save it from the fate of the other three posts I wrote this week.  (Overwritten, nitpicked, and abandoned.)  Please forgive all the errors.  

In the last post I tried not to reveal too much about the hubster’s choices out of respect for his privacy, but since then he’s let me know he’s okay with it if I do.  I’m grateful because it’ll be easier this way.  Each time we’ve sat down together it’s become more apparent that, while each of us is trying to define our own individual wishes, this process is ultimately ALL about relationships.  We don’t live in a vacuum and evidently we won’t be dying in one either.  If we don’t make the effort now to discuss this with everyone else who absolutely will be involved if either of us dies in the next few years, then it may not mean shit how brilliantly we write it down.

Getting this paperwork completed and filed is only the first step.  I may have declared February our Advance Directive Month, but 2012 is evidently going to be the Year of our Advance Directives, too.  I foresee a lot of conversations about dying in our future.

And that is, by far and above, the scariest part of this whole thing for me.  As anyone who’s been reading this blog for a while knows, I’m not particularly afraid of facing death.  What I am very afraid of is asking other people, in person, to leap across the abyss and face it with me.

Talking about dying is just so very, very taboo and I’ve already put people off with it so many times before.  It’s one thing to chat about it here on the blog, but it’s something else entirely to look directly into another person’s horrified eyes and say Hey!  Ya wanna come over and talk about plugs and when to pull ’em?

I did make the leap last night though, with Beloved Daughter.  She came over so we could watch the final episode of Downton Abbey together and before we sat down I tentatively asked if she’d be willing to fill out an advance directive with me or, if not, at least let me know what she’d want in a worst case scenario.

Her response totally surprised me.  She was not only willing, she was actually enthusiastic about it.  She even started telling me a couple thoughts she’d already had about it and she’s only twenty-five years old.  I was so relieved.

Maybe that first leap is going to be the hardest part.

A couple of specific items we discussed this weekend:

1)  Alternate medical proxies…just in case we’re in a car crash together and can’t serve as each others.  We both picked friends instead of family members.  (We haven’t actually asked them yet though.)  I had a couple of reasons.  My friend is a nurse who’s also into holistic healing and we share a similar preference for minimal medical intervention.  She’ll be more able than most to successfully bridge the gaping divide between the two systems.  I also didn’t want to burden either of the kids with having to make those choices.  They’ll be going through enough.  For the hubster, it was a toss up between his friend and his doctor-brother.  The friend won because he lives in here in town and proximity trumped professional skills.

2)  No surprise: Idaho’s statutes concerning end of life choices are extremely conservative.  Sigh.  Evidently, it can be a challenge here to decline things like blood transfusions and antibiotics because they’re not considered “life sustaining” treatments like artificial nutrition and hydration are.  The hubster and I could be 200 years old, paralyzed, and lost in dementia, and the law would still require that we’re treated for pneumonia.

We’ll have to write specific requests in our advance directives stating that we would absolutely want to have all such treatments withheld, and then also make sure we discuss it with our doctor to find out if he’s okay with it.  Honestly?  I don’t think it’ll be a problem as long as we do our footwork now.  The laws err on the side of caution but from my experience working with hospice, common sense tends to prevail in real life.  Medical professionals involved with end-of-life care tend to be very respectful of individual wishes.

That’s it for now.  It’s hard to stop because there’s so much we’re talking about and learning that I could write five posts a day and not cover it all.  I started this journey thinking an advance directive was just a set of forms we’d fill out and give to a couple of people, and then we’d be done.  However, I’ve discovered that they’re really (surprise, surprise!) about our life and the people we love.  I don’t know why it surprised me.  I’ve known along that dying is all about life, too, and that including it in my life now, long before I die, makes everything I experience richer and scarier and more adventurous and full.  Why should advance directives be anything different?  I mean, really?

The hubster and I will actually fill out the forms this weekend.  We need to check with our friends to make sure they’re okay to be our medical proxies before actually filing them with the online registry.  I’m not sure we’ll finish by the 29th (leap year!) but if not it’ll be in the week following.

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

copyright Dia Osborn 2011

Another Break: Delightful Snowflakes

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

Okay.  I needed a break from advance directives and just found a good one:

A friend sent me a link to Have A Beauty Filled Day, a blog full of photographs and insights…two of my favorite things.  Christine Young, the author/photographer, takes her inspiration not only from the natural world, but often from the tiny natural world…which I particularly adore.

Here are a couple pics taken (with permission and a link) from a post entitled Flaky:

There are more photos.  This is only an appetite whetter.

(Also, for anyone wondering, this is what magic used to look like before it was roped and domesticated by Merlin, Houdini, Penn and Teller, and the rest of those guys.  Hard to recognize, no?  I think it’s the simplicity of it that fools most people.  There was often simple magic happening around dying people, too, which is perhaps why I recognize it.)

Check out the blog if you get a chance.  It’s a delight.

copyright Dia Osborn 2011

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


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

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

Huh oh.  Here’s an FYI post.

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

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

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

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

Enter: Advance directives that are registered online.

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

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

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

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

copyright Dia Osborn 2011