The Words to Heal…
A story by Mickey Ryan, CRNP
On January 3rd of 2003, I received a call from my sister in Philadelphia that it looked as if our mom had had a stroke. My sister found her in her apartment, slumped over on the couch, lethargic, her speech garbled, so my sister (of course) called 911. Our mom was taken to the ER of a neighborhood hospital, where the CT scanner was not working. My sister was told to wait in the first ER while our mom was taken to a nearby hospital for a brain scan. When she returned to the ER where my sister waited, she was intubated, on a ventilator, and comatose, and it was confirmed that she had suffered a massive stroke.
Our mom had a beautifully-written living will that she and our dad had completed together, years earlier. Our brother arrived the next morning from Tennessee, living will in hand. When our mom showed no signs of waking, and her repeat CT scans looked worse, we tried to talk with her neurologist about stopping the life-support measures. The neurologist was reluctant to “give up”, as he called it, despite the fact that Mom could not breathe on her own, swallow, interact, or maintain an adequate blood pressure without medication. My brother confronted him with Mom’s living will whenever he did rounds, but the physician preferred to avoid the conversation. With the help of an ICU resident who supported us and acted as a liaison, and after talking with our other brother in California, we made the agonizing decision to withdraw the life support measures. Mom died comfortably 24 hours after being extubated, with us at her side.
Even though this all made sense at the time, for the next 7 years I struggled with our decision. Did we cheat our mom out of a chance to recover? Should we have waited longer? Was this really our decision to make? What if…………………………
Had I understood then what I know now, since working for hospice for the past 3 years and learning a new language, I would not have struggled as I did. Our mom had been declining since our father died 7 years earlier. She had chronic, incurable illnesses including depression, hypertension, TIA’s, and vascular changes in her brain. She had a gait disorder due to the brain changes, which caused her to be sedentary, and early dementia. She was losing interest in her favorite things and her appetite was diminishing, as was her quality of life. Her medications were more of a burden to her than anything, which is why she stopped taking them. She had made her end-of-life wishes known, and our job was to give these wishes a voice and to honor them. The stroke was her terminal event, her repeat scans showed no chance of meaningful recovery, and more aggressive interventions would only have prolonged her dying, not her life. Framing this event with these words has made it crystal clear to me that we did the right thing, and now instead of agonizing over the decisions we made, I feel proud that we stood together and acted based on our love for Mom.
So, I offer this story in recognition of another in a long list of priceless gifts I have received during my time with hospice – the words to help heal myself, and to help others feel at peace when faced with making such terribly painful decisions.
Mickey Ryan, CRNP