Abstract
Dear Editor:
I provide palliative services for the ALS clinic at Wake Forest Baptist Medical Center. The hospital partnered with the local arts council to sponsor the play 33 Variations by Moisés Kaufman. This play tells two parallel stories. The first story is about Ludwig van Beethoven's hearing loss and the second story is about Katherine Brandt, a modern day musicologist, and her struggle with the diagnosis and progression of ALS. These stories are about losing physical function from progressive illnesses.
In one of the scenes Katherine has been taken to a hospital and Beethoven appears at her bedside and tells her the following:
BEETHOVEN: I was completely deaf by 1822.
KATHERINE: I know.
BEETHOVEN: It took me 25 years to go deaf.
KATHERINE: I know.
BEETHOVEN: Here's something you don't know: One day my hearing would be bad, and I would be terrified of going completely deaf. The next day I would improve. And my hope would return. And then it would get worse again. This back and forth between hope and despair was unbearable. And then, after 25 years of this, I became completely deaf. All hope was gone. And I was so…relieved! I would never hope again. Hoping is the great curse. And lo and behold, I was able to create music that would have never been possible had I been in the world of the hearing. The thing I'd feared most had happened and yet it allowed me to be with my music in the most intimate of ways.
As health care providers in the field of hospice and palliative medicine we often struggle with the push to retain and encourage hope. Much is written and discussed about the fear of hospice “taking away hope.” In some situations we may feel that certain types of hope are unfounded. I thought about how Beethoven's words might apply to my work with patients, their families, caregivers, and loved ones. According to Beethoven, hope in the face of a progressive disease kept him from fully living his life and working. I wonder if all of the emotional and psychological energy put into hoping is beneficial. Rather, according to Beethoven, hoping for “a cure” or improvement in his symptoms made him more despondent.
The opposite of hope doesn't have to be despair. This may be another way to help patients and their loved ones reframe their situation and retain optimism.