(Continued from Part VIII: Advance Directives: Dying Inside Our Big, Hairy Healthcare System)
The hubster and I just spent five glorious day up in the Sawtooth Mountains.
Snowshoeing. With heavy packs. Uphill. Both ways.
Kidding.
It sure seemed like it though. The snowshoe into the family cabin at the beginning of any trip is always a bitch and this was no exception–a two mile trek from the highway to the cabin, uphill with fully loaded packs, after a four and a half hour drive to get there. The bad news was that the trail wasn’t groomed like we were expecting so Dane the Mangy Rescue Mutt (with bad knee and brace) started really struggling in the deeper powder. (He made it though, and we’re more confident about his knee now than we have been in a while.)
The good news was that we got a late start leaving home so we didn’t actually strap the snowshoes on and start up the hill until about 8:00 pm. It was already dark and the stars that night…the stars my friends…were outrageous. It was one of the clearest nights we’ve ever seen and that’s saying a lot. We rarely use flashlights because 1) you really don’t need them once your eyes adjust and 2) the electric light is so bright it dims the night sky.
As you may have heard, there was a spectacular crescent Moon/Venus/Jupiter conjunction going on last weekend and, sure enough, that trinity was hanging just over the silhouette of snow capped mountains as we got started. However, the moon set after only twenty minutes so we had to content ourselves with a radiant swathe of Milky Way arcing over our heads from horizon to horizon while thousands of other constellations and stars filled the
rest of the sky bowl curving down to the ground on either side of it. (We made do.) Meanwhile, the snow reflected all that diffuse light back into the air so that after a while it felt almost like we were trudging through a softly glowing snow globe. I couldn’t get enough of it. I just couldn’t. I’m sure my face would have gotten frostbite from staring up through the bitter wind for almost two hours, except that my skin was too hot to freeze. The heavy exertion was making me huff and puff and sweat like a pig. (The hubster loved the stars too but was more preoccupied with trying to recall what were the exact symptoms of a heart attack.)
(Photo courtesy of Steve Jurvetson)
We’re getting older. There’s no denying it. And we’re not sure how many more times we’ll get to have these kinds of adventures. Physical limits are getting harder to ignore. But so far we’ve pushed on anyway because when you think about it, there are far worse ways to die than collapsing cradled in the wild beauty of high mountains while gazing up into pure, celestial wonder for the last time.
But not until we’ve finished our advance directives of course.
We packed these documents in along with everything else and spent one of our days at the cabin, pens in hand with a snowstorm raging outside, finally filling the things out. It was surprisingly emotional. We found it was one thing to sit and diligently read through them over the course of a few weekends, and something else entirely to actually write in our various notations, initial the desired boxes, and sign on the dotted line with each other as witnesses.
Everything suddenly got very final and real, and I kept hearing a heavy door swing shut with a key turning in the lock. At first I struggled with the feeling that, by signing the thing, I was somehow giving up all my rights and instinctively, I started backing away and questioning the wisdom of the whole project. I was surprised at how powerful…how primal…the wave of fear was.
But then I remembered something we’d read earlier, that if worst ever comes to worst and I’m finally lying unconscious and helpless and vulnerable somewhere, Somebody is going to step in and start making decisions for me. Whether I’ve filled out an advance directive or not. Whether I’ve picked them to be the person or not. Whether they know what I want or not. And I suddenly got it…on a deep, gut level…that my advance directive is not the thing that will strip me of control and make me silent and helpless, it’s the thing that will help protect me in case I ever am.
That helped my resolve firm again and I was able to continue.
The hubster told me later that the fear he faced arose from a sudden and overwhelming realization that he will, absolutely, someday just cease to exist. Poof. Evidently, it was a huge moment for him but I never would have guessed it. He didn’t look like he was sitting there reeling from the blinding, existential awareness of total, inescapable, physical annihilation to come. From the outside he just looked absorbed. Studying the paper in his hands, reading glasses perched on the end of his nose. It’s not that he was trying to hide his fear from me, that’s just the way he is. His courage is so unconscious most of the time that he usually doesn’t even realize that’s what’s going on.
We read and scribbled and talked about things for hours. Sometimes we laughed, I cried some, but mostly we took turns trying to explain what we were afraid of, what we longed for, and how much we loved. The process flushed out things that had been hidden and dormant for a long time. Tenuous hopes and secret dreads, things to be examined, cradled in tender hands, and then placed into each others’ keeping in a final gesture of deep trust.
I’ve been really surprised throughout this whole process at the huge relationship component involved in filling out these forms. Maybe because it was also a research project for me and we took so much time with it, maybe because we did it together as partners, I don’t really know but I tell you, it’s added a whole new level of meaning to Till death do us part. Overall it’s been a healing journey full of deepening intimacy for the hubster and I. We’ve shared things we didn’t know we hadn’t shared, and revealed things we didn’t even know ourselves until now.
I guess if there was any advice I could give out of everything we’ve learned so far it would be this:
Do your advance directives together. Find someone else who hasn’t done their’s yet, or who hasn’t looked at it in a long time if they have, and hold hands as you walk through it. The person you pick doesn’t have to be the same person who will be your medical proxy. (Although, if experience is any guide, you may want them to be by the time you’re done.) And it doesn’t have to be only one other person either. It could be a group…if you could find that many people brave enough. I strongly suspect that this is one area of life where the maxim There’s strength in numbers holds especially true. If you can possibly help it, don’t try to take this journey alone.
And take your time with it. Break the process down over a few days or weeks. If you let yourself sit with the questions for a while, you may be surprised by some of the answers that come up. I know we were.
Y’know, it’s kind of funny. In walking through our advance directives, it almost felt like an opportunity to practice for the real thing…for dying…from a safe distance. Emotionally speaking I mean. In our imaginations the hubster and I got to slip on the experience of profound vulnerability and dependence that goes with dying temporarily, while we’re still healthy and vital and strong. It was scary in some ways, but far less so than what I’d imagine it would be like facing it for the very first time in extremis.
And we got the chance to start honing a couple of the emotional skills that are essential to have during dying…things like the ability to surrender to the inevitable, to be openly vulnerable and reveal our needs to one another, to gratefully accept the help that’s offered and to be dependent gracefully. Things that, in our culture anyway, we tend to think of as weaknesses or failings, and yet they’re not. Those are things that actually require tremendous courage and strength. I didn’t realize how much before. To openly accept the willingness of another human being to step up and care for us isn’t easy, and accepting it with dignity is rare. (Especially for somebody as controlling as I am.) And yet the hubster confided a couple days ago that, during this whole process, he’s felt increasingly overwhelmed and touched by the depth of my trust. Our willingness to open up and be vulnerable with each other turned out to be, not a burden, but a gift.
So anyway, these are just a couple of the things we discovered while filling out our advance directives. It’s been a beautiful, frightening, surprising, hard, uplifting, sorrowful, strengthening, sobering, illuminating and profoundly intimate journey for us both.
And it’s still not over! Next, we’ve set up an evening to meet with the people whom we’ve selected as our alternative medical proxies, to get their consent and share our advance directives with them. Then we need to get the forms notarized, witnessed, copied, distributed and filed. (Note: Because Idaho’s laws place unusually high hurdles to a simple, low intervention dying process, we’re taking precautionary legal steps with our advance directives that wouldn’t be necessary in most other states. It’s extra insurance against something that probably won’t happen but still…better safe than sorry.)
And then, after we get ours taken care of, I’ve got the kids in my sights for theirs.
To wind this up, here are a series of photographs taken of some icicles hanging outside the cabin window during our recent stay. The changes they went through over the days we were there feel similar to the changes the hubster and I have gone through on this whole journey with advance directives.
Stage One: Glowing and happy from the previous night’s starlit adventure. Delicate, sparkly and naive:
Stage 2. Advance Directives Day–blasted by the elements, bewildered, and storm bent. Not so sparkly anymore, but still…multiplying and stronger:
Stage 3. Skies are clearing, brunt of the work is done. The amount of growth that happened during the storm is kind of surprising. Thicker, longer, and a lot more:
Stage 4. Older, calmer, wiser, stronger. Not so much sparkling as glowing. We’re a lot more confident now that we can weather the storm.
copyright Dia Osborn 2012
The Odd and Unmentionable 
Hi Dia,
Another great article, as always. A couple of comments that I hope will be helpful: First, as I’m sure you’ll agree and want your readers to know, they shouldn’t think that just because they’ve completed directives that those directives are the “final, unchangeable word written in stone.” Directives can be changed at any time as long as you are deemed competent, so you can literally change your wishes — you can even change them verbally as they’re wheeling you down the hall of the hospital on a gurney, if you want, although that’s probably not the best time to be making those kinds of decisions! 🙂 Second — and this is sort of a continuation of the first comment — all of those state-imposed “high hurdles” are false barriers. The Supreme Court of the United States established a long time ago that individuals have a right to refuse treatment under the Due Process Clause of the Constitution, and all states can do is try to establish rules on what constitutes “clear and convincing evidence” of a patient’s wishes. Also, practically speaking (and as you describe so well in your articles), when the need for medical directives arises, it is almost never in a vacuum. In other words, there are almost always people there to interpret the document, and it is just one of the things doctors take into account in deciding how to treat (or not) the patient. So, don’t let all of those formalities get in the way of you and “the hubster” — and your children! — completing the process.
One last question: You said, “We’re getting older.” Do you think the process/experience would have been different had you undertaken creating advance directives 10, 15 or even 20 years ago? If so, how? Thanks!
Scott
Hey Scott. Did I make it sound like I really believed my choices were written in stone? Whoops. I know they’re not of course. I was just talking about the wholly irrational fear that came up for me when it came time to write it all down. We’re actually filling these things out with a five year scope. At our age (50’s) we’re aware that our choices will evolve as our health changes with age. Mostly we were filling them out with a view to the possibility of accidents, as that’s the most probable situation that would bring advance directives into play at our age. If either of us became terminally ill from a chronic disease within our five year scope, we’d definitely go back and revisit them to make sure all our choices were still valid.
I’m aware of the U.S, Supreme Court’s decision on the individual’s right to refuse treatment but Idaho’s political climate can be unpredictable. Our legislature’s been known to pass things that the Idaho Supreme Court has to later strike down. I don’t know if you’re aware that they passed the Idaho conscience law in March of last year over the angry objections of Idaho’s elders, and it’s created a lot of uncertainty in the minds of everyone who lives here as to whether or not, practically speaking, their advance directives will necessarily be honored. Doctors are not allowed to refuse a patient’s requests, but a lot of Idaho is rural. Nurse practitioners and PA’s run a lot of the clinics and they can refuse to honor anything they want. My mother-in-law ran one such clinic for twenty-five years (as a nurse practitioner she was ALWAYS a fierce patient advocate btw) and I’m familiar with the wide variety of end-of-life situations she attended and the kinds of choices that came up there. If the hubster and I were ever in a fatal accident in the back country I’d be really bummed if I wound up with an attending who objected to my end-of-life wishes.
Idaho’s judicial system also tends to a little more punitive than a lot of others areas of the country, which leads to concerns for the surviving spouse or other proxy if a treating medical professional decides to officially object to any of our choices on moral grounds. While I have no doubt that our choices fall within the scope of what the U.S. Supreme Court intended, and that they would ultimately be vindicated, who wants to get swept up in that fight? All anybody around here wants to do is die peacefully, knowing that their proxy and loved ones can honor their wishes and still live free from prosecution afterward.
While I believe that the chances of that happening to us personally are minuscule, I disagree with you that the high hurdles of our particular state are completely “false.” For those of us who live here and understand the sometimes-mercurial political climate, they’re a real concern, and our unease is likely to continue until either the legislature rewrites the law, or a case finally comes up to challenge and further define its true limits. (Everyone is of course praying that the case won’t involve them.)
All that aside, I absolutely agree that none of this should stop us from filling out our advance directives. In fact, it makes it more important than ever that we do!!
Your question is an interesting one, Scott. From a purely practical perspective, of course. Filling out our advance directives ten or twenty years ago would have been vastly different than today because the general understanding of what we need them to do has evolved so much during that time. Both the law and medicine have changed radically.
But from a personal perspective? If the general understanding, legal framework, and medical choices were the same twenty years ago as they are today? I think it would still have been vastly different for us to sit down with advance directives for the first time in our twenties, or thirties, or forties, than it is now. Our circumstances and entire world view have changed over the years…our understanding of life and death, as well as the things we value most. For instance, at this age we’re far more aware and concerned about the legacy of our dying where loved ones are concerned than we would have been when we were younger. (I noticed when I a brought it up with my daughter that that aspect of dying simply didn’t occur to her yet.)
It would have been very different to sit down with it as an 18 year old with fantasies of immortality, as compared to after my children were born and my concern shifted to protecting them, or once the hubster and I built enough of an estate to want to preserve, or now, looking forward to trying to protect and provide for whichever one of us survives the other.
Honestly? I suspect the first time a person sits down to do this…no matter WHAT age…will always be the hardest. There’s a steep learning curve involved about all the choices we face, not to mention all the personal introspection and self-evaluation required. For us, the first time has been a lot like building the foundation for a house…it’s taken the lion’s share of the time. But the hardest work is now done and it will be a lot easier for us to come back and tweak it as our lives evolves. I can’t begin to tell you how much more confident I feel going forward. It’s like a very big load has been lifted on a lot of levels.
I know a number of people who filled out a quick advance directive right before a surgery/procedure a while back, and then haven’t thought of it since (or even know where it is or remember what they said in it.) Some people have been VERY surprised to discover that it’s something that should be regularly reviewed and updated. I’m getting the feeling that may be the norm rather than the exception, and I realize that it’s a very different approach than the one that we took, since I was also doing this as a research project for the blog. I guess there are as many different ways to fill out an advance directive as there are people doing it, and it can be done as quickly or as comprehensively as a person wants.
But both the hubster and I had the feeling a few times throughout the process that some kind of mentoring or class or something would be extraordinarily helpful where filling these things out are concerned. Like at a community education level or in living rooms with entire families or in churches or maybe some other kind of outreach program. Maybe something like that already exists, I don’t know, but I’m not sure a doctors office is the right place for most of this to happen…for reasons of time and cost constraints, because the majority of doctors are uncomfortable having that conversation to begin with, because it’s a particularly scary place to talk about the possibility of dying…it feels a lot more real in a sick room …and because our relationships with doctors aren’t always that close anymore. I personally think it would be good if everyone started their advance directive journey at age 18 but at that age, they’d HAVE to have some kind of hand-holding and guidance.
Anyway, just rambling… 🙂
When I sit down with my daughter I’m probably going to steer her towards MyDirectives.com as she’d never make it through the Lifecare advance directive we used. I still haven’t asked her what she thinks her peers’ take on advance directives is but the question is in the queue. Thanks for taking all the time with your thoughts here.
Oh! And btw, here’s a question for you. While the hubster and I were discussing refusing things like antibiotics, vaccines, blood transfusions, etc., the subject came up of voluntary exposure to other sick people. We both assured one another that if we were chronically lingering and miserable, we’d definitely want to have anyone visit who had a cold, or a bad case of the flu, or pneumonia, etc. But we worried about whether that would open up the surviving spouse to legal action for neglect or abuse. (Again, a possible concern here in Idaho.) Have you ever heard of someone writing into their advance directive that they refuse to be quarantined as part of their treatment wishes? We’re kind of curious. Thanks!
That first image is a stunner.
That one of the views from the cabin. It never gets old. Ever.
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