We all have stories to share. When it comes to end of life care and advanced illness, personal stories and narratives provide support and guidance unrivaled in power. Perhaps a doctor’s words or a nurse’s reassurance may help families struggling with chronic illness or the impending death of a loved one. Yet, as a physician I find it hard to rival the guidance and depth of understanding that patients and families experience when someone– anyone–shares their own story.
Katy Butler, is a master of narrative writing. An acclaimed writer with a list of honors that would make any writer drool, Ms. Butler’s writing is not only skillful, but personal. She has two stories to tell: that of her father, and that of her mother. The first story she tells is of her quest to have her father’s pacemaker disabled so that he could experience a natural death as he suffered with dementia. The second is that of her mother’s choice to forgo a serious heart surgery, despite the ‘promise’ of living well into her 90’s.
With each piece of hers that I read, I can’t help but feel that the world of “end of life advocacy” is fortunate to have a voice like Katy’s. Not only is she an amazing writer, but she writes from personal experience that leaps off the page. She also happens to be a lovely person, who I had the privilege of sharing a meal with a few years ago as she was performing research for her book “Knocking on Heaven’s Door”.
Although I haven’t yet read her book (it is on the top of my list), but if these two pieces by Ms. Butler are any indication, then it is surely a masterpiece.
My home is affectionately nicknamed “The Van Scoy Zoo”. At one time, I had, under one roof, two cats, a dog, two turtles, thirteen fish, a newborn baby and a husband. What can I say? I’m an animal lover, although with constant litter changes and late night dog walks I sometimes have to remind myself of this fact.
I am also an end-of-life advocate and practicing ICU doctor. I’ve told my husband that if I become ill and my life nears an end, that I would want an animal, preferably my own pet, with me when I die. In the hospital, out of the hospital, it doesn’t matter. I want an animal. Anyone who loves their pet can probably understand this.
I learned of a group called Pet Peace of Mind, whose mission is to keep hospice patients and their pets together as long as possible, even through death. The group also helps find placement for the pets after a patient passes away. For an animal lover, this work is profoundly important.
I try to read JAMA’s A Piece of My Mind column whenever I have the time. The column features narratives about a wide variety of topics, but they’re usually patient stories, ethical issues, or reflections about the practice of medicine. The August 7, 2013 edition of JAMA has a wonderful narrative by transplant surgeon Dr. Kenneth Woodside entitled “A Handshake” where he evaluates a patient for transplant eligibility. His eyes widen when he reads in the social history the simple word “Tortured”. Kudos to Dr. Woodside and his patient for sharing the story.