It wasn’t long ago that I received a phone call from my best friend T. His mother had slowly progressive, moderate dementia but was relatively stable. T is her MDPOA and all advanced care planning was carefully documented. His mom took a sudden turn for the worse and was taken to the hospital where her testing showed nothing of concern. Even so, she continued to decline and became progressively less responsive. She was not communicative and was refusing nourishment–it was clear she was dying. T asked, “What should I do?” I said, “Buddy, I think your mom’s time is short. What were her wishes when it came to this?” He responded, “She wanted to be at her residence.” So I told him “Well that is what you should do.”

I received another call from T and his wife B a few hours later. They were somewhat aggravated. T told me that he had asked the doctors to discharge his mom and he was going to take her home.  To his surprise, he was told that his mom was “not stable enough for transport, if we move her, she could die in transport.”  I recall his next statement perfectly.  T said “Dude, so my mom is too unstable to die?” I’ve never heard this dilemma described in quite this way and I thought it was a powerful choice of words. That statement simultaneously illustrates the frustration of patients and their loved ones as they navigate the health system–especially at the end of life, and how modern medicine can miss the mark even while providing what by all accounts is excellent medical care. T’s mom lived another few days and died in her hospital room peacefully. As I sat with my friend with a scotch to celebrate his mom, he confided that he feels guilty for suggesting that his mom should be discharged, but also guilty that his mom died in a place she would not have chosen. And though I don’t know the full details of the conversations that occurred in the hospital, I am sure that we, the medical community, are responsible in large part for T’s unnecessary guilt.

It still strikes me when I hear of similar stories how often patient and family wishes are incompletely acknowledged.  I am reminded to continually think about my old internal medicine blinders and remember that it is not only the choices and decisions that patients and loved ones make that determines how survivors cope with death’s aftermath, but our choices and decisions too.