This week’s piece comes to us from fellow editor Scott Nappalos, a healthcare worker in Miami. He writes about the challenges of salvaging human interactions and compassion while working in a profiteering healthcare system that renders impotent patients and healthcare workers alike.
We Carry Our Failures:
Working With People in a Dehumanizing System
My patient would come back to the hospital just as soon as he left. We’ll call him Mr. Jones. His arm was mangled by a rare cancer that took his digit and much of his sensation and movement. He wore a hat over his thinning hair that read ‘Vietnam Veteran’. Rare cancer, God only knows what he was exposed to there. He took to me and would greet me and discuss his condition even when I wasn’t assigned to him, “it’s miserable” looking to his hand “living like this”.
Everyone took him to be a problem. They accused him of being a drug addict and using the hospital like a hotel for room and board, as he would sneak off the unit to smoke, talk to vets, buy junk food, and tool around outside in his wheelchair. Doctors would discharge him and he’d come right back. No one believed the stories he gave that were enough to get him readmitted, essentially living in the hospital for months despite discharges.
He liked to receive his pain medication intravenously, and always demanded it which didn’t help his reputation. Most health workers in my experience don’t take cancer pain seriously, and its common to find physicians giving minimal medication despite frequent studies showing that pain medications are under prescribed with real detrimental health effects. He was routinely given only minimal oral medications without anything long-acting to smooth out the ups and downs of pain.
Maybe he was addicted, but what does that mean, and what impact does that have with diseases like painful types of cancer where pain is unrelenting and constant? Studies continue to show that pain medication for painful illnesses do not tend to produce debilitating drug addiction in the sense we are used to beyond the course of the disease; addiction is a social disease at least in large point. I wondered what it was like at home that he would constantly return, despite being accused, harassed, and gotten rid of. I wondered what would make him want to be in a hospital more than in the free air of society. Friends and family would visit him, but I had a sinking suspicion that he was scared of the misery he lived in, and feared more than anything being alone; dying alone.
Working with people puts you into situations where you face problems without much to go on, problems made of people’s lives. You rack your brain, maybe even read research, but when faced with a person with needs unfulfilled all your experiences and knowledge can be rendered useless. The system is set up to limit resources and deprive people of basic assistance, usually through trying to extract it from them and their families. The health worker sits between these problems and they bear down on them every day. These failures linger in our minds buried beneath the harsh words, insurmountable work, and caffeine propelling us through long hours, but making appearances in our sleep, in quiet moments, and for those who can’t cope disastrously in our personal lives.
Part of the challenge is to change the narrative around the tug-of-war and where the failure lies. Authorities, medical or political, would have us believe it is individual initiative, professional incompetency, or economic mismanagement. We need to find ways to put into words how the system fails us and what our needs really are. Had my patient been able to verbalize his fears it would have been clear both how valid and truly human his problem was and the bankruptcy of the entire medical establishment.