Closure.org Blog

As a graduate student finishing up the last months of my occupational therapy (OT) degree on an inpatient rehabilitation unit, Mr. T was one of my first patients whom I was completely responsible for all aspects of his therapy.  He was in his mid-50’s and just had a large hematoma drained from the right side of his skull.  I had no idea what to expect when I first walked into Mr. T’s room, but I quickly came to know him as a caring and humorous individual who was full of life. He was constantly surrounded by his family (with six children it’s difficult to find some alone time!) and by members of his church.  Through the advances and set-backs in Mr. T’s functional ability due to his ongoing chemotherapy, we had our tough moments. But after spending an hour and a half together every day, we had developed a solid relationship.

One morning, Mr. T arrived at therapy looking distraught and frazzled.  I asked the rehab aide if she could work on a task with my other patient, and Mr. T and I moved to the opposite side of the room. “Are you okay?” I asked Mr. T. He shook his head no, unable to really speak. After a few minutes, Mr. T said “I saw my oncologist this morning. He said there was no point in continuing chemotherapy.”  We sat in silence; neither one of us really knowing what to say.  For the rest of the session, we just talked. We talked about everything from discussing his outlook with his family (which he had kept hidden from them to the best of his ability) to his connection with God.

As our conversation came to close, I thought about how the healthcare system failed Mr. T. No one had discussed end-of-life with Mr. T until the last moment possible. And after the discussion was inevitable, it was performed like the act of pulling off a band-aid; swift, with little time to think. Would he have chosen to do his last round of chemotherapy, if he knew it was likely futile? Would he have chosen to stay in the hospital for therapy when he could have been at home with his family? Would his decisions have been different if his family members were an active part of the team?

Oftentimes, healthcare workers don’t feel as if they have the time or energy to connect with their patients.  To even think about having an extended, emotional conversation about end-of-life care, as in Mr. T’s case, seems like an impossible feat. Healthcare workers spend so much time nursing the system, instead of nursing the patient. In order to improve end-of-life care, we cannot overlook the fact that sometimes the wastes and inefficiencies in the system lead to inadequate outcomes and to vital conversations that get pushed to the side.

A month after Mr. T was discharged, I read his obituary in the newspaper.  The young father of six died in a nursing home.  I wondered how it could have been different. I had imagined him at home with his wife and six children. I had imagined him with frequent visitors from church. I had imagined him receiving palliative care. I had imagined he knew what to expect.  I hadn’t imagined no one had told him he had a choice.