HJNO Jul/Aug 2024

HEALTHCARE JOURNAL OF NEW ORLEANS I  JUL / AUG 2024 37 I was having a pretty good spring until I at- tended the Association of Health Care Jour- nalists’ annual meeting in New York City in June. This group consists of journalists rang- ing from New York Times reporters to free- lancers supplying health content to small ru- ral newspapers, all with a passion for health and healthcare. It was a conference laden with ills and folks who like to expose them. Lions and Tigers and Bears… The head of CDC spoke about gaining pub- lic trust after the pandemic, the problem with armchair epidemiologists, and then asked us to help CDC win the hearts and minds of the public. This call bristled more than a few report- ers in the room, who feel it is their job to hold agencies like this accountable. The director of Medicare spoke with us and endured a Q&A session. She seemed so mired in certain details that I wondered if the big picture of taking care of our elderly citizens was missing at the heart of the agency. Other sessions included horror stories of huge, unexpected bills sent to un- suspecting seniors who didn’t make the right Medicare or Medicare Advantage choice, and/ or choose the right parts at the right age. I won- dered how the elderly navigate such a complex system that very few of us actually understand. Another session revealed that over 40% of Americans are in medical debt, and that num- ber is expected to rise to 60% in five years. I heard how private equity is fleecing the nurs- ing homes they own and providing less care, how the government is now trying to require minimum caregivers per resident, and how nursing homes are saying they cannot afford to provide that level of care. I learned how Medicare Advantage plans make you stay in- network, can switch what they offer mid-year, and pretty much make you predict which doc- tors you will need in advance, while the list of a plan’s doctors does not have to be accurate. We heard more than ever how prior authoriza- tion issues are driving many doctors crazy — or to burnout; how patients do not understand their rights; how hospitals are not informing patients of charity care options; how some nonprofits are buying medical debt and some argue that it is unethical; how some cancer patients with medical debt are being denied care at facilities; and how some hospitals are now offering medical credit cards to patients as a way to keep them on the hook for debt. Then, I visited my parents and got to ac- tually live out parts of the conference. My mom had been recently hospitalized with salmonella and parainfluenza; she was more fragile than I have ever seen her. …Oh My! Dad, now in a caretaking role and knowing what I do, shared how the health department reached out to them when they got home — nice to know the public health system is work- ing. He said most of the nurses were wonderful, except one. Mother shared that she was and still is having a hard time tolerating smells and mentioned several of the aides wore too much perfume, a nuisance I thought to myself, and something administrators may take into con- sideration, but minor compared to what I heard next from her. A nurse, she said, threatened to “have her strapped down” because my mother wanted help out of a diaper, filled with excre- ment, burning her skin, and filled up to her belly button and back, before she gave vitals. She said this nurse then refused to help her clean herself when she couldn’t reach behind because of painful IVs, general weakness, and instability. She shared how that nurse told her she was on a “mobility floor and had to clean herself,” the humiliation of the fact she simply couldn’t clean herself, and the horror that she was going back to a bed — still soiled, with a UTI — and that the process was continuing. I have only seen my mother cry a few times in my life. She told me, through held-back tears, how she thought she was dying and maybe killing my father and sister because hospital workers showed up in what she believed were hazmat suits, protecting themselves but not providing or giving protection to those she loved. She was frightened that Lipitor had affected her liver and pancreas because she was told some of her “numbers were high.” I just listened; it felt sur- real to me that someone I love, a sick lady in her 80s who has changed countless diapers herself as a mother of five children, could be scared and humiliated by a caregiver in the hospital. The next day, 12 days after discharge, I ac- companied my parents to her first follow-up ap- pointment. They were worried in the car if they could get a parking space close to the door. They were grateful I dropped them off, but I could sense their frustration with the situation, with the system, with the scare they had been through recently, and perhaps just with their stage in life. It was sweet watching my parents, who recently celebrated their 60th wedding anniversary, slowly make their way together through the clinic. That doctor sensed anxiety and took his time with my mother. He alleviated a lot of fears, talked through several things like why the hospital staff would wear a hazmat suit but not offer one to those visiting her room, told her that her liver and pancreas looked pretty good considering what she had been through, and I could feel her spirit and energy rising in the room. She left feeling much better, even though we learned she more than likely had Clostridioides difficile (C. diff). That doc- tor is a healer — one who can make you feel better, even while telling you something may be wrong with you. The C. diff test required a stool sample and a return trip to the lab the next day. Not a big deal for most, but for two elderly people, one who cannot drive, every trip is actually becoming a big deal. The doc was right; she was positive for C. diff, and the “... it felt surreal to me that someone I love, a sick lady in her 80s who has changed countless diapers herself as a mother of five children, could be scared and humiliated by a caregiver in the hospital.”