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.
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.
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.
(The above photo is of U.S. Navy search and rescue students.)
copyright Dia Osborn 2011