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Janice Lynch Schuster


Advance Care Planning: Confessions (Cont'd)

Today, we'd like you to glean some inspiration from the continuation of Janice Lynch Schuster's telling advance care planning journey. Part one of 'Advance Care Planning: Confessions' was this week's Wednesday evening post.

Part 2 of 2 by Janice Lynch Schuster

(To the left Schuster is pictured with her four children; Meredith, mentioned in this piece, is the young lady on the far right)

Writing: 1997

In the late 1990s, I got involved in working with Dr. Joanne Lynn and Americans for Better Care of the Dying. Through that work, I came to understand and appreciate the importance of completing an advance directive, of naming a health care spokesperson, of making sure that one’s wishes and preferences are known. I wrote about admirable and successful programs, from Respecting Choices in LaCrosse, Wisconsin, to The Five Wishes document available online. I read about values questionnaires and life reviews. I wrote about how important it is for families to have the conversations, to record their wishes, to make sure that their wishes are known to one another and to their health care providers. I helped to write several books on improving care for the end of life, and in each one extolled the importance of creating an advance directive, describing it as a gift to families, a way to help them avoid heartbreaking and divisive decisions that can occur when no such plans exist.

And yet I was a hypocrite—for all my talk, I had not completed my own advance directive. I thought about it, talked about it, described my wishes to my husband, but never went so far as to put anything on paper. Then, in 2001, when my fourth child was born, I decided to complete an advance directive form as part of my labor and delivery. When I asked the nurse for the hospital’s standard form, she laughed. I was there to give birth, she said, not to die. Even so, I was by then an older mother, aware of the many complications that could arise during the most routine births. I insisted that I be given the form, which I dutifully completed, noting that if it came to it, sparing my life would be more important than sparing the baby’s. It was a selfish but essential thing to do; several other children then depended on me as their mother.

When I’m Gone

I saw a book advertised that I thought would help me through the process; if nothing else, it would give me a place to write down the scores of passwords and usernames I have developed in my prolific online life. I looked forward to the book, which is a nice spiral bound compendium of some 144 pages. I opened it, was promptly overwhelmed by it, and closed it. It sits on a bottom shelf, gathering dusk and triggering my guilt.

I don’t want to be morbid

My 18-year old daughter recently sent me an email message with the subject line, “I don’t want to be morbid.” For some reason, her abnormal psychology class was discussing the importance of creating advance care directives, and Meredith felt that she and I should sit down and craft hers. She didn’t want to think about dying, she said, but she did want to think about what she would want done if she were in a car crash and unable to live, breathe, eat, or think on her own. She asked if I could help her with this, and I promptly referred her to The Five Wishes website, which seems the easiest and most straightforward form to complete.

In hindsight, I realize that I need to sit down with her and complete this form together. We need to have a conversation, each of us, about what we want and don’t want, about what we fear and what we hope for. We think we know—but until we begin the dialogue, we are only guessing at beliefs, based on our own experiences. Today happens to be Meredith’s 19th birthday. As a present to her, I am making a promise to myself—and to her—to sit down together and go through this process.

Janice Lynch Schuster has written extensively about improving care at the end of life. With Joanne Lynn, she coauthored two books on quality improvement for end of life care: Improving Care for the End of Life: A Sourcebook for Healthcare Managers; and Clinicians and A Common Sense Guide to Improving End of Life Care (both from Oxford). Currently a senior writer with Altarum Institute, Schuster’s past work includes serving as director of communications for Americans for Better Care of the Dying. Her work has been widely published and is often featured in The Washington Post. She has received several blue pencil awards for her work with the National Institute on Aging.*



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."