(Continued from Part VI: Advance Directives: Mine.)
Editor’s note: Today, I decided to just write a quick post and publish it without proof reading. It may be the only way to save it from the fate of the other three posts I wrote this week. (Overwritten, nitpicked, and abandoned.) Please forgive all the errors.
In the last post I tried not to reveal too much about the hubster’s choices out of respect for his privacy, but since then he’s let me know he’s okay with it if I do. I’m grateful because it’ll be easier this way. Each time we’ve sat down together it’s become more apparent that, while each of us is trying to define our own individual wishes, this process is ultimately ALL about relationships. We don’t live in a vacuum and evidently we won’t be dying in one either. If we don’t make the effort now to discuss this with everyone else who absolutely will be involved if either of us dies in the next few years, then it may not mean shit how brilliantly we write it down.
Getting this paperwork completed and filed is only the first step. I may have declared February our Advance Directive Month, but 2012 is evidently going to be the Year of our Advance Directives, too. I foresee a lot of conversations about dying in our future.
And that is, by far and above, the scariest part of this whole thing for me. As anyone who’s been reading this blog for a while knows, I’m not particularly afraid of facing death. What I am very afraid of is asking other people, in person, to leap across the abyss and face it with me.
Talking about dying is just so very, very taboo and I’ve already put people off with it so many times before. It’s one thing to chat about it here on the blog, but it’s something else entirely to look directly into another person’s horrified eyes and say Hey! Ya wanna come over and talk about plugs and when to pull ’em?
I did make the leap last night though, with Beloved Daughter. She came over so we could watch the final episode of Downton Abbey together and before we sat down I tentatively asked if she’d be willing to fill out an advance directive with me or, if not, at least let me know what she’d want in a worst case scenario.
Her response totally surprised me. She was not only willing, she was actually enthusiastic about it. She even started telling me a couple thoughts she’d already had about it and she’s only twenty-five years old. I was so relieved.
Maybe that first leap is going to be the hardest part.
A couple of specific items we discussed this weekend:
1) Alternate medical proxies…just in case we’re in a car crash together and can’t serve as each others. We both picked friends instead of family members. (We haven’t actually asked them yet though.) I had a couple of reasons. My friend is a nurse who’s also into holistic healing and we share a similar preference for minimal medical intervention. She’ll be more able than most to successfully bridge the gaping divide between the two systems. I also didn’t want to burden either of the kids with having to make those choices. They’ll be going through enough. For the hubster, it was a toss up between his friend and his doctor-brother. The friend won because he lives in here in town and proximity trumped professional skills.
2) No surprise: Idaho’s statutes concerning end of life choices are extremely conservative. Sigh. Evidently, it can be a challenge here to decline things like blood transfusions and antibiotics because they’re not considered “life sustaining” treatments like artificial nutrition and hydration are. The hubster and I could be 200 years old, paralyzed, and lost in dementia, and the law would still require that we’re treated for pneumonia.
We’ll have to write specific requests in our advance directives stating that we would absolutely want to have all such treatments withheld, and then also make sure we discuss it with our doctor to find out if he’s okay with it. Honestly? I don’t think it’ll be a problem as long as we do our footwork now. The laws err on the side of caution but from my experience working with hospice, common sense tends to prevail in real life. Medical professionals involved with end-of-life care tend to be very respectful of individual wishes.
That’s it for now. It’s hard to stop because there’s so much we’re talking about and learning that I could write five posts a day and not cover it all. I started this journey thinking an advance directive was just a set of forms we’d fill out and give to a couple of people, and then we’d be done. However, I’ve discovered that they’re really (surprise, surprise!) about our life and the people we love. I don’t know why it surprised me. I’ve known along that dying is all about life, too, and that including it in my life now, long before I die, makes everything I experience richer and scarier and more adventurous and full. Why should advance directives be anything different? I mean, really?
The hubster and I will actually fill out the forms this weekend. We need to check with our friends to make sure they’re okay to be our medical proxies before actually filing them with the online registry. I’m not sure we’ll finish by the 29th (leap year!) but if not it’ll be in the week following.
(Next: Part VIII: Advance Directives: Dying Inside Our Big, Hairy Healthcare System)
copyright Dia Osborn 2011
The Odd and Unmentionable 
Hi Dia, I like your blog posts more and more every time I read them. On this post, I particularly like the fact that you’re getting Beloved Daughter involved. So many people think that advance medical directives are only for the old and/or chronically ill. The reality is that while the chances are slim, an accident could happen at any time – and accidents don’t pay attention to age or health status! We’re working very hard to bring those end-of-life discussions out of the closet and back into the mainstream where they once were before they became so taboo. If it’s not too much trouble (of course, if it is, then pretend I never asked :-)), I’d be curious to know what Beloved Daughter thinks her friends’ take would be on the topics of end-of-life care and advance directives. Remembering when I was young, myself – a long time ago, in a galaxy . . . – I’m pretty sure I thought I was “bullet proof” and would never die, so why would I need directives? It would be wonderful if Beloved Daughter’s generation is smarter and has more common sense than I (or my generation) did. Thanks again for sharing your thoughts on a very important topic with the world!
Really interesting question Scott. I’ll ask her next time I talk to her about this. I kind of doubt that dying is a big topic of conversation among her circle of friends but you never know. She’s probably a little more knowledgeable about end-of-life issues than the average person her age simply because of my influence. But knowledge aside, I was still expecting some squeamishness on her part when it came to talking about our own deaths in specific detail. I was surprised at her readiness to talk about it…she was VERY clear she doesn’t want to be kept alive in a vegetative state, which is of course the first thing most people think of when the topic comes up…and I wonder if the majority of people her age feel equally strongly about it? I’ll keep you posted.
Hi Dia
I’m glad that you and your husband are sorting this with your daughter and friends, and I am in total agreement with sorting this stuff out, in depth and without any ambiguity, if (or rather when) the time comes to put these wishes into effect.
My folks have no such plan, and to be honest neither have I. Saying that, every time they go abroad, especially if it involves air travel, I am given instructions on insurance policies, pensions etc. It gets a bit much sometimes for me, listening to them talk of ‘worst case scenarios’, particularly when they are supposed to be off on holiday to have a great time, but I understand that they are telling me these things for my benefit and out of love.
I had to laugh Chris…”it gets a bit much sometimes for me, listening to them talk of ‘worst case scenarios’, particularly when they are supposed to be off on holiday to have a great time.” That would make a GREAT Saturday Night Live skit!
I admit I’ve done that to our kids a few times…told them where all the important documents are just as we’re heading up into the mountains for a vacation…and I know most of it goes in one ear and out the other. The truth is if I was knocked into unconscious right now the hubster and the kids would be lost. I take care of everything and there’s important information spread across three computers, a couple of notebooks with scrawled passwords, five filing cabinets plus six garage storage boxes, and two safety deposit boxes. I’ve got a hand written will scribbled quickly before a snowshoeing trip…oh…ten years ago and I’m relatively certain I’d die before they ever found the health insurance policy.
I could take care of anybody else though.
So, yeah, it was way-past-time to work on this. I’m just glad we decided to break it down into weekly meetings…it seems a lot easier to tackle for an hour or so a week. If we had tried to do the whole thing in one sitting we never would have started. It would have been too overwhelming.
Boy, can I relate to Chris’s discomfort when his parents bring up the topic of “what if.” My mom did that with me, revealing where she’d “hidden some important stuff.”….a story in itself. I always sort of plugged my years when she started talking this way, sure that my know-it-all-sister would run things however she jolly well felt like running them. Imagine my surprise during the reading of the will with the attorney and my sister, when I realized that mother had imparted some of that information ONLY to ME. And there I was…not remembering what she’d told me.
This is tough stuff. We just don’t want to think about losing our loved ones and our devious little brains work hard at protecting us from thinking…
We’re all in that boat with our parents aging now I guess. I know I tried to ask my Mom all kinds of questions about what she’d want and she was so vague I didn’t feel like I learned very much. As a result I’m still wrestling with some of the more ambiguous circumstances of her death almost three years later. Hers was a case where broader communication with the entire family would have made a huge difference for all of us. I really don’t want to do that to my kids, y’know?
Another terrific post, Dia. I was particularly interested in Beloved Daughter’s response to “the conversation.” It’s natural for young people not to be thinking about dying. Thing is, they’re aging in a world of technological life extension that makes the manner and timing of death much more relevant that for my ancestors or my (boom, boom, boom!) generation. As for dying, too, being about relationships…nice insight!
Also wanted to let you know that as a result of your review of the features and options offered for creating advance directives, MyDirectives.com now has a printable wallet card. Upon completion of a directive, members can print out the card, which includes a secure URL and QR code. Amongst ourselves, we call it the “Dia Card.”
You made me laugh! I’m really glad you’re offering a wallet card now though. I was surprised to hear that you did a focus group and discovered that so many people don’t want them. I guess we’re in the minority. But for us, it’s essential, perhaps because the hubster travels so much (frequently through horrendous weather) and therefore is at greater risk of accident and winding up in a distant emergency room alone. Thanks so much for listening!
Glad you got a chuckle out of that! It’s easy to think a feature’s not important until you listen to someone for whom it is. Appreciate that you made the point so clearly.
Ms. Osborn: We have enjoyed reading your series of posts on advance directives and the importance of advance care planning. In Part III you kindly mention our Five Wishes advance directive, of which more than 18 million are in national circulation. We are the nation’s largest provider of advance directives — Five Wishes is available in 26 languages. 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. All registries accept Five Wishes; our online version allows you to send the completed document in PDF. Keep up the great work! –Paul Malley, President, Aging with Dignity.
Hi Paul…thanks so much for taking the time to let me know. I’ve gone back to the original post and updated it with the correction. Honestly, it seems like I wrote that post in a different age, I’ve learned so much since then. Dia
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