Closure.org Blog

From the John A. Hartford Foundation Blog

By Amy Berman

Shortly after I was diagnosed with inflammatory breast cancer a scan showed a hot spot on my lower spine.  Was it the spread of cancer?  My oncologist scheduled a bone biopsy at my hospital, Maimonides Medical Center, in order for us to find out.

A few days before the procedure, I went in for preadmissions testing.  As part of my formal intake, in addition to collecting my insurance information and poking and prodding me a few times, the nurse asked me if I would like to fill out an advance directive. This was not because she was a miraculous oracle who knew the outcome of my biopsy, which would leave me with a Stage IV  diagnosis. No, her question was merely standard procedure.  I said yes, and shortly, a specially trained social worker arrived to walk me through the process.

A cheerful young woman reminiscent of a camp counselor sat down next to me with papers neatly attached to her clipboard.  The first step, she explained, is appointing a health care proxy, someone you trust to make health decisions for you should you become incapacitated.  Being a nurse, I knew this, but it was comforting having someone there with me while I filled out the form. I chose my mother.  Since my diagnosis, she and I had had numerous conversations about what I wanted should my disease progress and take away my quality of life. I trusted that she would respect my wishes, even if that meant making painful decisions as my disease progresses.

By Dr. Jonathan Weinkle

The longer I discuss end-of-life, the more stories I hear, the more nuanced my view becomes.  Last month I facilitated a fascinating discussion that was meant to open an honest conversation about death and dying, to break down what I often call the Brighton Beach Memoirs approach to death – that is, whispering the word out of fear that, if we say it out loud it might happen to us.

The discussion ended with a personal story from one of the participants who was dying – her words, and her doctors – of a liver abscess two years prior, only to come back “escaped to tell thee” like one of the messengers coming to Job.  What had saved her was a surgery that had one chance in a hundred of succeeding, and who knows what chance of leaving her dead on the operating table.  Why was she undergoing the surgery?  Her daughter insisted that, “If she’s going to die anyway, why don’t you operate?  What have you got to lose?”
Sounds like anathema to the usual message of “caring before curing,” doesn’t it?  Yet it is hard to argue with the outcome of this previously dying woman who walked into the room under her own power, sat attentively in a lecture and discussion for an hour, and chose this moment at the waning of our hour to articulately tell the story of how reports of her death had been greatly exaggerated.