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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."