“Kerry” was not her real name. It was the Americanized version. She fell in love and married a young American man traveling in her country. Their love was strong enough for her to leave her family and home and come to a country where she knew no one but her husband, where she did not know the language or culture. And then she got sick, really sick. A rare and aggressive cancer took residency in her body and refused to be stopped by surgery or chemotherapy.
Kerry was too weak for more treatment but her care was too complicated for discharge. Managing her pain and nausea were a daily challenge. She suffered and suffered while we tried and tried. Some days were better than others. As soon as we thought we’d made a breakthrough at managing her symptoms, a bad day would march through and it was like starting from scratch. Kerry’s response was to withdraw from the overwhelming situation. So many caregivers were in and out of her room that she turned her head and closed her eyes when you entered.
Through it all her husband stayed at the bedside, essentially moving in to the hospital. Her sweetness was revealed through his fidelity to her. He held her hand, whispered questions to her and relayed the answers to whose ever turn it was to care for her. It was beautiful yet unnerving at the same time. He suffered too, yet demanded little from us. He asked for refills of water or help turning her when it was convenient for staff, “I don’t want to bother you guys. I know how busy everyone is.”
Yvonne wasn’t the only one to cry while providing care. A simple mention of Kerry’s room number was enough to prompt a sigh and a head shake from RNs, PCAs, PTs and RTs. And was often accompanied by tears.
We wanted to do something! We wanted to fix her or at the very least make her comfortable. We wanted to feel we had done something to improve her situation. We wanted to care for her and feel the small reward of having made a difference. But that goal proved elusive. The rapid progression of disease coupled with a language barrier, with her emotional withdrawal, and with the complicated nature of her care, left all of us feeling powerless. The sense of powerlessness added to the suffering of the staff. It was what made us tear up.
DISCUSSION
We knew the trajectory of her illness, which carried its own burden, yet had to maintain the face of hope even though we knew her situation was hopeless. Our unwillingness to project that knowledge onto her husband trapped us in a lie of omission. We witnessed his hope rise: there was a new chemo to try! And then fall: her scans showed progression of disease.