August 1st marked the second anniversary of the day we brought my sister home to die. Having been in the hospital for 22 months with complications from post-operative wound separation and subsequent sepsis, she experienced both the best and worst that healthcare offers. Of course not everything of the worst comes from clinics, but also to the lack of prevention from patients side.

For the majority of the 22 months, Elizabeth was hospitalized four hours away from family. She was sick, in pain, weak, and very lonely. It elated us when she moved to the nursing home an hour away, but weren’t sure if she could be managed outside an acute care facility. One morning, after being in the nursing home just a few days, she called me sobbing. I could barely understand her through her sobs. I panicked thinking her abdominal wound had re-opened. It hadn’t. What had upset her was unconscionable staff behavior.

The Best and Worst of Times

It turns out that her colostomy bag had broken loose and had leaked stool on the bed and floor. The nursing assistant had told her to clean up her own mess – that he shouldn’t have to do it. She felt shamed and helpless. The statement appalled me. How could anyone working in healthcare be so cruel? 

It’s very difficult to think back of episodes like that, but there were many more that were on the opposite end of the compassion continuum. There were times when nurses would take her out on a balcony so she could feel the sun on her face even for just a minute or two. Or the time an aid decorated her room for Christmas and styled her hair so she would look her best for her visitors. And then there was the final goodbye at the hospital. When it came time to wheel her from her room for the last time, we were stunned and very moved to see the staff lining the hall to bid her farewell. Their presence was a dignified, respectful way of saying goodbye Elizabeth. You matter. 

They really were the best of times and the worst of times.