Dying With Dignity

"In the U.S., we spend enormous amounts of energy keeping people alive, curing, fixing, and prolonging life at all costs. What we rarely talk about is how people die. And more importantly, how poorly our system supports them when the end is clearly approaching. My Dad died over 6 months ago. He had Parkinson's Dementia. His slow decline for over a decade was painful to witness. Any doctor knows that the average life expectancy after diagnosis is around ten years."

"She was his caregiver, his advocate, his constant companion. She watched him slowly slip away. There were days he didn't recognize her, or me even, and my Mom faced them all with love. As a physician, I recognized the signs and knew we were approaching his final chapter. He was eating less, sleeping more, and became completely bedbound. I also knew what he needed, which was hospice. What I didn't anticipate was how hard it would be to get it."

"While the individual doctors we encountered were compassionate and responsive, they were working within a system that was fragmented, rigid, and focused more on efficiency than humanity - a system that too often missed the bigger picture. It began with missed follow-ups. My father was asked to come into the clinic for labs, even though he was bedbound. When my mother tried to explain, she was told he didn't "qualify" for a telehealth visit. Only after I intervened as a physician was an exception made."

A physician recounts a thirteen-year decline of a father with Parkinson's dementia and the mother's dedicated caregiving. The patient became bedbound, ate less, and slept more, meeting clinical indicators for end-of-life support but encountering systemic barriers. Clinical processes demanded in-person labs for a bedbound patient and denied telehealth eligibility. Hospice admission was refused based on weight and albumin thresholds. Attempts to obtain palliative care resulted in administrative confusion, departmental handoffs, and unclear distinctions between hospice and palliative services. The experience exposes fragmentation, rigidity, and a system that prioritizes efficiency over humane end-of-life care.

Read at Psychology Today