Tag Archives: Life

Part VI: Advance Directives: Mine

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(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

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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?

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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

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

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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

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

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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

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

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

It’s better when we do it together.

Confession: I haven’t done my advance directive yet.

I’m embarrassed to admit it, but there it is.  In spite of my harping and spouting I haven’t walked my own talk.  (Not entirely sure why but probably because this shit is not only scary, it’s confusing.)

Well, it’s time to climb off the soapbox and dive into those cold waters like I keep telling everyone else to do.  I’ve done one thing at least…talked to the people most likely to make decisions for me if worst comes to worst…but that’s not enough.  No…ho…ho.  They’ll also need legal paperwork to prove that I mean what they say, so I need to do the deed itself.  Put pen to paper.  Download the state forms, sign on the dotted line, and give them copies.

It’s Time to Legalize And Let It Go.

The hubster is doing this with me and while we’re at it, I wanted to invite everyone else who hasn’t done their advance directive yet, but wants to (or not) to join us on our little adventure.  I’m going to try and enroll my kids and siblings and their families in the process, too, because I really want to know what they want in case (God forbid!) I wind up having to make decisions for any of them. 

IMPORTANT SAFETY TIP:  The need for an advance directive knows no age limit, anyone can wind up incapacitated and unable to make decisions at any time.  If you’re 18 or over, this sucker is a good thing to have. 

I’m assuming this process will bring up questions, fears, and insights along the way that we can all help each other with and learn from so IMHO, the more the merrier.

Are you ready to rumble?!!!

In the next couple of weeks I’ll be researching and posting about the who’s, why’s, what’s, where’s, when’s, and how’s of the process, and then in February the hubster and I will take the plunge and do all the concrete steps necessary to make sure that everyone from intimate family members to state agencies are clear on what-we-would-and-would-not-want in the event.

So if you haven’t filled out your advanced directive yet either, feel free to join us.  I figure there’s strength in numbers.

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

copyright Dia Osborn 2011

Elders and the Strange Gravitational Effect of Final Mystery

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

image by chrisroll

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

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

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

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

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

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

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

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

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

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

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

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

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

This is the most amazing ride.

copyright Dia Osborn 2011

Christmas isn’t always merry and New Years isn’t always happy. And that’s okay.

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

Life wasn’t designed to conform to a strict holiday schedule.

Somehow, someday, everyone who lives long enough will hit a rough year, and maybe this was one of those years for you.  You might…for very good reasons…be feeling sad or lonely, uncertain or frightened, angry or bitter, overwhelmed or numb, and I’d just like to say that if you are, whatever you’re going through and however long it lasts, you’re still just as welcome in this Season of Miracles-That-Come-In-The-Night as everybody else.  In fact, maybe even more so.

Because feeling low doesn’t mean there’s not still gratitude or appreciation, wonder or love, lying underneath.  It just means that those things are buried and resting temporarily, like a landscape hidden beneath a mantle of snow.  They’re down there waiting patiently while winter does its different yet equally important job.

I guess this is one of those holiday seasons for me.  The last year held a variety of hits and scares that were tough for me to navigate and, while none were catastrophic and all will eventually work themselves through, the cumulative effect evidently took a lot more out of me than I realized. This is the first Christmas since 1995 that I haven’t written my annual Thoughts From The Yuletide letter to slip in with our Christmas cards because, with all the good will in the world, I just couldn’t burrow down to where my hope and light are usually cached.  (And I wasn’t about to send out the crap I was digging through to get there.)

So, since the main bulk of my twinkling words remained out of reach this year, I thought I’d borrow somebody else’s instead (along with music and breathtaking photography.)  Because whether I can currently reach it or not, this is what always lives in the deepest place inside me, and it’s what I always wish most for you, too:

copyright Dia Osborn 2011

Blip 3 From The Book and Sugar Plum Fairies

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

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

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

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

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

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

And then it was gone.

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

copyright Dia Osborn 2011

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

The Gratefulness Exercise

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

Part of this year’s harvest.

Thanksgiving is on Thursday so naturally I’ve started thinking about what I’m most grateful for this year.  (Or any year for that matter.)  I thought I’d try for at least the top ten here:

1)  Thank you for my life.  (This is always number one because the fact that I’m still alive after 53 years is nothing short of amazing to me.  For however long it lasts, thank you thank you thank you.)

2)  Thank you for starlight, waters, storms, mountain vistas, seasons, and the hikes I’ve taken through all of them. 

3)  Thank you for things I can’t control.  I hate them but I know they’re good for me.

4)  Thank you for yogurt.

5)  Thank you for the hubster, beloved son, and beloved daughter, as well as giving them the patience to love me back when I’ve made it hard.

6)  Thank you for Dane’s epilepsy cure and helping him to still be able to walk after all.  I was so scared for him.

7)  Thank you for this blog and the chance to have a voice.

8)  Thank you for all the help and support from people over the last year.  In fact, thanks for all people everywhere.  Doing this whole life-thing alone would have really sucked.

9)  Thank you for the depression easing up so much.  I can’t tell you how good it feels to be hopeful again.

10) And lastly, thank you for both light and darkness.  Having both helps keep everything in perspective, y’know?

Here’s wishing everyone a meaningful Thanksgiving full of love and healing.

More of the harvest. Yum!

copyright Dia Osborn 2011

Hey Advertisers: We’re hiding from you for a reason

Posted by Dia in Advertising and tagged with , , ,

Linda over at Rangewriter wrote an insightful post titled What is the deal with women’s nipples? where she looked at, among other things, T.V.’s inconsistent censorship of different parts of human anatomy.  It’s an interesting read.  The following thread began on topic but eventually wandered off into rants about commercials…which caught my attention because I totally share their sentiment.  It seems pretty much all of us loathe commercials.  In fact, we dislike them so much that we develop strategies and often purchase/rent expensive hardware just to avoid them.  But of course advertisers know this and are growing ever more cunning in their attempts to trap us into watching them anyway.

In a way it’s amusing.  Our viewing behavior reminds me of octopuses.  Linda also recently tipped me off to a fascinating article titled Deep Intellect which explores the amazing intelligence of these creatures and how recent discoveries are causing scientists to rethink what they know about intelligence in general.  At one point the author describes how octopuses in a research center resisted being taken out of their tanks to be tested in a maze.

“Some octopuses did not like being removed from their tanks. They would hide. They would squeeze into a corner where they couldn’t be pried out. They would hold on to some object with their arms and not let go.

Some would let themselves be captured, only to use the net as a trampoline. They’d leap off the mesh and onto the floor—and then run for it. Yes, run. “You’d chase them under the tank, back and forth, like you were chasing a cat,” Warburton said. “It’s so weird!” “

When I think about how hard we try to escape the commercials that advertisers try and trap us with, I can’t help but think of the octopuses.  We’ve been quite industrious and creative in our attempts.  We started by going off to other rooms during breaks but advertisers just turned up the volume on commercials.  Then someone invented the mute button.  Then someone went one better and invented TiVo so we could first record and then fast forward right through the ads.  Everyone at some point uses commercial breaks to just go off and do other things.  In fact, this behavior is so well known it’s taken for granted.  At a recent Weight Watchers meeting, the handout (distributed to WW meetings nationwide) suggested using commercials to get up and do sit-ups, speed walk around the house, jump rope, or otherwise exercise.  Avoidance of commercials has become institutionalized.

The predator/prey relationship that’s developed with modern advertising (actually, it’s starting to feel a bit like stalking) seems short sighted to me.  Why don’t advertisers, rather than trying to hunt us down and pin our eyelids open, just make better commercials?  Something that people want to watch?  We all know they can do it.  There are some amazing commercials out there, ads we enjoy because they educate/enlighten/move/entertain us.  For example, the commercials made for the Super Bowl each year have become one of the highlights of the game…they even have their own spin-off show.

Advertisers need to realize that it’s not that we don’t want to watch commercials, it’s that we don’t want to watch boring commercials.  They’re perfectly capable of giving us something valuable in return for our attention…a fair and reasonable exchange which most people could get behind.  And if they did I imagine it would go a long way towards developing some brand loyalty instead of making us want to avoid a company as much as we want to escape their annoying ads.

Here are a couple of my personal favorites, commercials that I would not only willingly watch during a break in any TV show, I would (and did) hunt them down on the internet to watch again afterwards of my own volition.  (Not to mention feature them in a blog post.)

First, this thought provoking commercial from Carlsberg Beer:  The Bikers

Second, a mythically humorous one from Toyota: Shoot it!

Third, pure fantasy from James Boag’s Draught:  Pure Waters  (Beer makers as a group seem to already understand what I’m talking about.)

Fourth, some amazing innovative design from Audi:  Audi RS6

And then of course, there is my personal all time favorite, this inspirational commercial from Pantene:  The Violinist

This, of course, is only a tiny example of the excellence our advertisers are capable of. The Clio Awards are given each year for the best in advertising in all forms of media, the world over.  You can see some of the other excellent commercials that have won in previous years in this small sample on AEF, the Advertising Educational Foundation.

copyright Dia Osborn 2011

Season of Soup

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

Some parents’ newly-adult children continue to come home for monetary handouts or a place to do laundry.  My daughter returned to graze from the big pot of soup I always had simmering on the stove.  Soup is my staple.  My life.  It’s the natural expression of my inner low maintenance and generally uninspired chef.  If I lived alone and never had visitors the only utensils I’d own would be a couple of spoons and a large, glass bowl.

Although I admit, in the last couple of years since we stopped using air conditioning and turned to the whole house fan at night for our summer cooling, I’ve reluctantly turned towards cooler foods like salad with miscellaneous grilled things on top.  It’s an oh-so elegant alternative to soup since it can  also be served in a bowl.  But when the sun finally, finally! starts it’s slanting descent–when I sense the first hint of autumn chill on the wind–I breathe a happy sigh, get down on my knees, and drag the cauldron out from the back of the cupboard again.  The season of soup is returning.

This shift from summer to fall cooking is like my version of migration; a genetic impulse surfacing from a lost and lazy ancestor in the past, a distant grandmother who cared as little as I do if the different food groups touch each other beforehand.  Clearly, she was not from a Mediterranean climate with its joyful people who eat for love and beauty.  No, she came from someplace cold and dark, with long winters and fur shoes.  A far northern locale with scarce and unimaginative food like root vegetables and frozen meat.

She would have had the northern lights in lieu of cuisine, though, and she would have loved them.   I got that from her, too.  I’d trade a rich sauce for the Aurora Borealis any day of the week.  Here’s a Youtube video that explains why.  (For the genitalia-averse, please beware the explicit educational ad for condoms tucked in amongst the tile display of ads afterwards.  But for anyone still mystified as to proper application, this ad is probably for you.)

Today it’s in the 30’s outside and I have a cozy fire burning in the woodstove and eight or nine overripe bananas sitting on the countertop.

Traditionally I would’ve used them for banana bread but the hubster and I have recently started a diet and sweet breads, while allowed, are challenging from a portion-control perspective.  (Forgive me, but half a slice?  Really?  Whoever thought that up must have been tongueless.)  So instead I’m considering an exploratory foray into some kind of a sweet soup.  Perhaps mixed with chicken broth, caramelized (which I used to call burned-because-I-was-distracted) onions, butternut squash, cream (damn…I mean nonfat milk) and lime pieces?  Or should I go with a spicy red curry stew, with onions, pumpkin, peas, and coconut milk (damn…I mean lite coconut milk mixed half and half with nonfat milk)?  It all sounds so exotic, so gourmet, I know…until one realizes I’m driven solely by a depression-era hoarding instinct (also inherited from cold and hungry forbears) that disallows the waste of a crumb.  I could no more throw away a banana than I could eat my own child.

But oh how good it feels to be cold again.

copyright Dia Osborn 2011

(Ha ha!  Written in under two hours!!  Progress is made.)