The last day in May. It’s now post “Happy” (how absurd!) Memorial Day Weekend. Scrolling through Facebook posts of parades and BBQs, Yuri and I are once again feeling abandoned by the hospital system because of a traditional holiday weekend. “It’s Monday.” “It’s Memorial Day.” I am reminded. I say, “I don’t care what day it is. Yuri is not getting the care promised because the “specialty” teams that are scheduled don’t show up.” They don’t come. They don’t answer to anyone because it’s a weekend. Patients languish in beds while the advertisements everywhere tout the hospital’s high rating in personalized patient care.
We’re not the only ones that feel this way. The Nurse explains that many family members complain over this Happy Memorial Day Weekend watching loved ones not get the medical attention they should. One or two days can make the biggest difference in either moving forward or a major setback, possibly for months. When they tell me time frames – days, weeks, months of rehab, I want to scream.
It’s absurd to come into an ER only to not have vital information given credence; they didn’t ask or contact the primary care physician despite it being listed on “My Chart”; they admit the patient assessing an issue and later say it wasn’t the case; then a doctor comes in adamant about being a stickler for tests and doesn’t read notes that would help treat a person whose diagnosis and treatment are laid out in five thousand pages of medical records; finally, having to get special permission for the treatment. “Don’t wait. Don’t wait. Don’t wait. The three weeks of intensive critical care saves Yuri and is considered a positive outcome, but what about the post-critical care when the ICU team goes onto the next case, never to be seen again? What’s the positive outcome for someone who relives the mental anguish of his current physical state? We’re currently in survival mode waiting for “What’s Next?” Not many options are available.
The patient accessible website, My Chart, is a dismal failure. An electronic system of delivering a “Review of My Daily Plan of Care” is put out as a five-page stapled waste of paper. It lists the providers on “My Treatment Team” with no specific notes pertaining to their five-minute room visit and assessment. The Lab Orders are listed with no explanation for what this means and in what context. Treatments are planned and implemented sometimes making judgment calls without first assessing the patient. An elective procedure may not have been necessary, but the pressure to do so left me staring at the ceiling on many sleepless nights. The comments from PT (physical therapy) are the most biting as they state “new functional deficit not expected to spontaneously improve.” Speech and swallow evaluation ordered for 5/29. Oops, that’s a Sunday. No one comes. Next day? Oh, yeah, it’s Monday. Happy Memorial Day. No one shows.
Yuri and I watched a lot of baseball, the History Channel, and classic movies. Blasts of Happy Memorial Day Weekend were interspersed with some solemn, reality moments of what this day is supposed to mean– honoring the men and women who died in wars, the ones who made it out remain in survival mode. We are also in a war.
Ailments and autoimmune diseases we never imagined are upon us. A million have not come out of this alive. The nurses are out on the frontline sometimes as cannon fodder when patient advocates have enough of a system where patients are treated like batons– coming into the hands of one team and then handed off to another. Victor Franco, author of “Man’s Search for Meaning” writes, “To live is to suffer. To survive is to find meaning in suffering”. We will keep an eye out for the meaning, the second time around. Having a meaningful day is what keeps us going.
