Healthcare, Access, and the Steep Cost to Regular Folks, Part 1
Note: I wrote this in the throes of frustration and despair over a dying loved one a little over a year ago. I hope it teaches the audience something valuable about how to protect against the worst.
Storytelling provides catharsis in ways I have been unable to achieve otherwise. Allow me to recount my weekend, and for the audience, please bear with me as I embark on an odyssey. I promise the threads will converge to form a few salient points.
The Devastating Reality of Late-Stage Pancreatic Cancer
I spent this past weekend visiting a loved one hospitalized with Stage IV pancreatic adenocarcinoma that was diagnosed just days earlier. For the non-medical folks, pancreatic adenocarcinoma is among the deadliest and most aggressive types of cancer and remains incurable. Stage IV means it has spread to other parts of the body, making it near impossible to stamp out each focus of cancer stealing the body's energy, one parasite multiplying exponentially until the body becomes a meal for the cancer.
Pancreatic adenocarcinoma often presents with no or very nonspecific symptoms, like vague abdominal pain, easily chalked up to something else like a stomach bug. The lack of warning signs often leads to late diagnosis, when there is nothing that can be done to stave off the steady march towards a headstone. Once the cancer has spread or metastasized beyond the pancreas, time left on this earth is limited to months, with less than 10% of patients making it to one year after diagnosis, even with the latest and greatest medical interventions.
The Emotional Toll of a Terminal Diagnosis on Families
The weekend was spent achieving a few tasks, starting with explaining to a largely non-medical family what this means for the person we cherish. Swallowing the fact that this disease will take him from us soon is nigh impossible when the diagnosis just took place days earlier. Imagine being told, "dad/mom has 3 months to live if we're being optimistic" just days after a CT scan and a biopsy of a mass found on the scan. One cannot reach acceptance when comprehension has barely pierced the fog of pain and despair.
When the Healthcare System Fails Patients and Their Families
Coordinating care amongst the various doctors assigned to the patient represented the essence of a broken medical system. The surgeon who placed a tube to drain bile, since the cancer blocked the body's natural drainage system, saw my loved one like medical students see cadavers in anatomy lab, checking on the drain but ignoring the nexus of grieving family members, ignoring the excruciating pain the patient was experiencing, ignoring the concept of patient as human. The kidney doctor consulted to address the patient's failing kidneys refused to change the pain medication no matter how much I screamed in frustration that the medication is toxic in failing kidneys. "Palliative care usually deals with the pain regimen," she said, cold and sterile in the way doctors are often conditioned to be.
