Your Advanced Directive Isn’t the End. It’s the Beginning!

TweetChat: It's fun!
TweetChat: It’s fun!

Nora Miller’s husband was diagnosed with terminal lung cancer in 1999, and died peacefully after exercising his right to Death with Dignity under Oregon’s law. Her mother and sister weren’t so fortunate.

These contrasting experiences have motivated Nora to do what she can to promote the enactment of Death with Dignity laws in all states, to encourage medical personnel to learn about and embrace the benefits of the law for their patients, and to challenge misrepresentations of the facts about Death with Dignity wherever possible.

So you’ve made an advanced directive, selected a healthcare advocate, and given it to all the important people who need to know—your surrogate, your family, your physician, your hospital (you have, right?). The directive is intended to reflect how you feel right now about the difficult decisions your health advocate would have to make for you if you were suddenly incapacitated and required invasive procedures or life-saving treatments. So you Have the Conversation, think over the options, make your decisions, check off the boxes, sign on the dotted line, and send out the copies. It feels good to have things spelled out so clearly. Now you can stop thinking about that and get on with Other Stuff, right?

Well, yes. And no. As Drs. Jerome Groopman and Pamela Hartzband point out in their article from the ACP Internist newsletter, the advance directive isn’t then end, it’s the beginning. How you feel about things today is probably not how you’ll feel tomorrow. Things inevitably change, and with them, your perspective on what it means to suffer, to thrive, to live, and to die. What makes sense today may seem inadequate in the face of a newly diagnosed disease, or an unexpected turn for the worse with a chronic problem. Or you may find you have strong opinions that remain steadfast regardless of what comes. But you can’t know unless you check in with the questions now and then, to make sure your answers still fit.

After all, you don’t just keep on buying the same size shoes without trying them on just because you were once a size 7B, right? Just as your feet spread with age or new bunions develop that shift you into a different comfort zone, your views change on what it means to be happy, or healthy, or content, or just getting along, or really not comfortable.

Few of us go through even one major or serious medical event in our lives. We have no direct experience with the burdens of a severe illness, nor do we know how we’ll fare when tested beyond our perceived limits of endurance with symptoms we’ve never even imagined before. Could I tolerate living in one room, unable to go out? How would I cope with frequent surgeries? Would I want to hang on to life if living means relative immobility and dependence on others for every need?

And if I know I’ll die within months, do I have different answers for these questions?

In a 2008 study on how people perceive their decisions about advanced directives, researchers found people who changed their decisions a year after first making them incorrectly believed their new decisions were the same as those they made previously. This suggests that when circumstances or experience prompt us to feel differently about a particular decision, we may simply assume we always felt that way. Unless we go back and revisit our advance directives, we may end up in a situation where our written instructions (from an earlier period) conflict with what we now might wish to have done, or avoid.

It’s clear we can’t let ourselves off the hook just because we managed one time to work through the conversation, made the hard decisions, and got an advance directive written up and distributed. So, how do we keep them evergreen and up-to-date? Please join me for Thursday’s #DWDchat on Twitter at 6:00pm Eastern Time.

Editor’s note:
This TweetChat is part of a series of weekly conversations about different aspects of dying and Death with Dignity laws. Through TweetChats, Twitter allows an open and candid discussion about a particular subject indicated by a hashtag. (Learn more about hashtags here.) Since we chat about Death with Dignity, we use #DWDchat as our hashtag.

New to Twitter and TweetChats? Here are some easy steps to join in the fun:

  • When: Thursday, August 2, from 6pm to 7pm Eastern (3pm to 4pm Pacific).
  • Where: TweetChat in the #DWDchat room. Once you’re on the webpage for the #DWDchat, this hashtag will automatically be added to your tweet.
  • How:
    1. Sign up on Twitter today,
    2. Follow us (we always follow-back),
    3. Go to the TweetChat site,
    4. Authorize TweetChat to use your Twitter account by clicking “Sign In”,
    5. You’re ready to join the discussion!
  • Questions? Email Melissa.

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