Abstract

In lieu of an abstract, here is a brief excerpt of the content:Dying is DifficultClarice DouilleHayden had been a constant in my life since I was eight, as our families were close. He was a single dad who loved to talk and always had a smile on his face. He was obsessed with anything related to his kids and attended every school activity or sporting event.In 2015, Hayden was diagnosed with stage III colon cancer. He was adamant that he didn't want to share any information about his condition with his kids, waiting several months until the eve of his first surgery before breaking the news to them. Hayden made the operation seem trivial and underplayed the severity of the chemotherapy treatments that would follow. Despite whatever he was feeling, he seemed committed to maintaining his happy demeanor, which was probably an effort to convince himself and others to feel better about the situation.Hayden survived his first operation and rounds of chemotherapy. And, over the next several years, he chose to undergo a regimen of additional aggressive treatments, submitting to surgery after surgery, as well as several more rounds of chemotherapy, followed by radiation treatments. I was already working as a home care aide, and because of the close relationship between our families, Hayden asked me to help as his caregiver, including running errands and babysitting for his younger kids. Hayden made it clear that he wanted his kids to remain ignorant of the progression of his condition so that they wouldn't worry and become anxious. It seemed he was motivated by his desire to preserve his young kids' happiness and innocence. In hindsight, I think this prevented his kids from being able to fully savor moments with their dad or prepare for the possibility of his death. I also think Hayden was trying to shelter himself from his own fear of mortality. And it was this fear that made Hayden a "difficult patient."Hayden suffered both physically and mentally, not only from his disease and treatment but also from his fear of mortality. I noticed how he tried to hide his suffering by shutting himself in his bedroom and making excuses when he wasn't eating. He often forgot to take his medications; he refused to use pill boxes and objected to reminders from others. The consequences often meant additional hospitalizations. I wish more palliative options had been introduced to him earlier in his disease course. I believe a palliative care team would have encouraged Hayden to think about and discuss death, helped him change his outlook for treatment and living with cancer, and most importantly, enabled him to better enjoy the remainder of his life with his kids.Nevertheless, I understood why Hayden was worried about his kids, and I could see how his recent personal experiences since his initial diagnosis might have contributed to his choice for the most aggressive treatments: his sister and both his parents had died, leaving no other relatives to care for his kids. He wanted to be there for his kids, yet the side effects of treatment made him so sick that he couldn't leave his bed. He couldn't even do the very activities that made him want to live.Hayden was an extremely social person, but when he found out his cancer was terminal, he [End Page E6] isolated himself from his loved ones for nearly six weeks. Even though I was likely the only person he was communicating with, as the person who helped him and his family, I often didn't see him for weeks at a time. He would text me requests, leave money on the front table, and ask me to drop off the items I purchased and then leave. Hayden's kids continued their daily routines, despite comments from them about his absence.In early August 2020, Hayden was admitted to the hospital. His doctor called the kids at home and told them that their dad would immediately be enrolled in hospice care. They were, as one might expect, shocked at this news. They knew their dad was sick and had been dealing with his cancer for years. But Hayden's health deteriorated slowly, and the kids hadn't known...