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medical decision making

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Just 12 Days 'til NHDD 2011: Won't You Share Your Story?

So here’s my story:

I clicked the link to fill out my very own advanced care directive. What an odd feeling to be the ‘patient’ filling out this form. It’s a subject I’d broached with my family time and time again (and, they were having no part of it), something that I’ve publicly advocated for over a year and that I’d publicly and privately chastised others for either not doing or not being interested in doing. And now, here I was, finally making an honest advocate of myself. As I read the instructions, all I could think to myself was ‘who can I possibly trust to respect and voice my wishes? ’ I’m closest to my twin sister and my mom, but not only do they not even trust me to pick out my own wardrobe, I can’t even bait them into a conversation about advanced care directives. Oye Vay! So I read it again! After more careful thought, I decided that my mom might let emotion cloud her judgment and my advanced care directive may turn up missing. But Melissa – my twin sister – on the other hand, she’s a straight shooter. She might not like or agree with my choices, but she’d speak up because it’s the right thing to do.

Then, I got down to business, filling out the form! Luckily, this part was easy…what I had done for the past 16 months, is deliberate and clearly determine what I would or would not want done in terms of life sustaining treatments in various scenarios of terminal illness. Do attempt curative care in the initial stages of illness (if you haven’t already tried and failed) if physicians are hopeful of recovery or the odds seem like they are in my favor. DO NOT seek life sustaining care if it’s apparent that I’m dying and nothing is going to stop that process; let me live comfortably in my home surrounded by my stuff with hospice taking on the burden of care and giving aid to family caretakers. The details of which I clearly stated in the five lines allotted. And, it was a good feeling. In fact, ‘good’ may be an understatement, a wave of relief washed over me! My next thought was my next step: convince my family to have the same piece of mind I experienced when my advance directive was complete. So I guess my story is to be continued...

 

You may –or may not—have been able to relate to my advance care directive story. However, many of the people I’ve shared it with in hopes of sparking ‘the conversation,’ have. We want the NHDD initiative to inspire people from all walks of life to be moved to plan their healthcare decisions and so we need people from all walks of life to share their stories.

 

So, now I ask: after reading mine, won’t you share your story?

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Advance Care Planning: Confessions


In this telling, two-part post, Janice Lynch Schuster, this week’s NHDD guest blogger, acclaimed end-of-life care advocate and writer shares her very personal experiences with advance care planning.
Part 1 of 2 by Janice Lynch Schuster



My Grandmother: 1994
Many years ago, when my grandmother was dying of kidney cancer, we thought we had an advance care plan that clarified her wishes not to suffer or to be a burden to the family: We would pull that archetypal plug. We were naïve, having never been exposed before to a dying person, and we thought that, in fact, there would be one big plug that tethered her to some kind of life support, and whose unplugging would free her spirit from this life. It turned out, of course, that no such plug existed. To be sure, she was plugged in to an array of medical devices and monitors, but unplugging anyone of them would not have brought a swift end to her suffering—in some cases, it might even have prolonged it. And as her pain and suffering grew ever more intolerable and intractable, my family pleaded with the health care team to end my grandmother’s pain. They could not—and so the few wishes I had heard her express for the end of her life went unheeded. She did not, as she had wanted, die at home. She was transported, as she had not wanted to be, back to the hospital by ambulance. She was in near constant pain. And her final hours were not peaceful and dignified. Despite all of our plans, nothing went as it should have or as we expected it to.

Birth: 1990
When I was pregnant with my first child, I made an elaborate, pages-long birth plan for all of the many eventualities that I thought I might want to accompany his birth. I wanted my husband in the room, of course—and I wanted music, tapes, tennis balls, warm socks, a bathtub, and all of the other happy distractions that were meant to take my mind off the work at hand. Also, I did not want an epidural or an episiotomy, I did not want a C-section or a forceps delivery, I did not want to be shaved and I did not want to be in stirrups. When labor began in earnest, my birth plan went out the window. The epidural was administered, compromising my ability to push and leaving me with a forceps delivery and an episiotomy from which it took months to heal. My single experience of trying to plan for my own health care wishes and preferences had failed miserably—mostly because of my own failure to understand or believe that childbirth, for all we know about it, is a messy, painful, unpredictable, and emotional experience. It did not matter what my wishes were, once the reality of my situation came to pass. It was all I could do to get through it. The next three times I gave birth, I made no plans whatsoever, other than to get all the painkillers I could when I could. And even that didn’t always work out. It eroded my faith in being able to plan for health care.

Want to get the rest of Janice's compelling advanced care planning journey? Check out tomorrow’s evening post for part two of "Advance Care Planning: Confessions."

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