US Healthcare is broken
Note: This was originally posted on Twitter in 2021, and I hesitated a bit to put it here because of the format; in the end, it is what it was, so I adjusted the format a bit for posterity.
As a prologue, I want to say that almost everyone my parents have dealt with has been kind and had the best of intentions. The care was good. My parents are fortunate, they have Tricare for their health insurance and that covers a lot. But healthcare in the United States is broken. There are some companies (like my former employer, Devoted Health), that are trying to fix it from the inside out. I hope it works, because this post explains how the current system is failing all of us.
The “best” path ahead of all of us is that we all grow old and pass away in our sleep. But what if you don’t? What if your older years bring something else? Here’s where we start.
My 76 year-old father was diagnosed years ago with Mild Cognitive Impairment (MCI) &endash; not necessarily pre-dementia or pre-Alzheimer’s. He would sometimes forget words or his train of thought, he was less active. He slept more. Dad was always a little weird, and after a lifetime of military, private, and civil service, he retired. He was 72.
A few weeks ago, Dad was much worse. He wasn’t understanding as much, he was walking slightly differently, and sometimes he couldn’t seem to perceive things correctly. After a few hours, we all decided to stop hoping something wasn’t wrong. My 74 year-old mother took him to the ER. He had brain bleed. He was taken to a neurological ICU where they adjusted his medications (including especially blood pressure). Their goal was to keep his blood pressure below 140 for at least two days. Part of that meant his daily sodium intake was kept under 800mg.
The ICU doctor moved him to “the floor” two days later. Two days after that, a different doctor determined he was “ready” to be discharged to acute inpatient rehabilitation (so, not home and not the ICU in name or function, but something between a rehabilitation center and an ICU). He was transferred at 11pm instead of 8pm as planned, and wasn’t cooperative because he wasn’t clear what was going on. He began physical, occupational, and speech therapy (PT/OT/ST) the next day: six days after his stroke.
The coordinator for this and all of the next steps was a social worker. While my mother could talk to anyone she happened to find at the facility, communication from them was unscheduled. Communication with the social worker was also unscheduled.
His therapy schedule varied every day. My mother had to call the facility to find it out every morning.
At rehab, he had a “minder” with him 24-7, and he was connected to alarms. Because the stroke caused Left Neglect, he was considered a fall risk. Because of his MCI and stroke, he couldn’t always remember what he should and shouldn’t do. And yet, at this facility, they started getting my father’s signature on forms (?!). (In his therapy, he had trouble recognizing “left” and tracking his movement through space. Moving a ball side to side is the hardest therapy. I wouldn’t want anyone asking me important questions or signing forms if I couldn’t determine what “left” was.)
Whilst in the ICU, Dad had CAT and CTE scans and an MRI. In a lengthy description on a report after seeing the optometrist were lots of medical terms that meant nothing to us. After a bunch of research (on our own), we learned that what it said was that it appears Dad has, in the past, had silent strokes in a different part of his brain. This was not detected when he was diagnosed with MCI because there was no MRI performed then. (Again, this was not called out in any sort of layperson explanation to my mother. This was literally decoded by me googling terminology and a my brother talking to a doctor friend of his.)
My Dad was at this facility for ten days. His meals were sometimes ordered by my mother, sometimes default, sometimes ordered “by someone.” He was constantly brought sodas, though he doesn’t drink them. [Some of the food confusion was a new food supplier, so we shouldn’t read too much into that beyond WTF would you give soda to any human, especially one in a medical facility.] During this period, the social worker presented my mother with some options for sub-acute rehabilitation facilities for Dad to go to next. It was on my mother to choose one, apply, and get him in. A(nother) new doctor was part of his care team at the acute rehabilitation center, but we never spoke to him. On day 3, after two sessions of each therapy, his care team determined that he would probably be discharged in four days. This was confirmed on day 6. So my mother had less than a week to learn about, research, and secure a sub-acute facility. Fortunately, she was able to.
Dad was transferred on a Friday before noon, and the paperwork went from the acute facility to the sub-acute facility, with no copy to my mother, who has medical power of attorney. At the receiving sub-acute facility, his meals had no regard for the sodium level. The paperwork said a “regular diet” and only the physician or dietician at the new facility could override that. Or my mother could bring him food. Or the acute care facility could send new paperwork. But it was the weekend, and there was no one to answer that particular request. That would have to wait ... three days.
So: Dad was transferred on a Friday. By Medicare regulations, he has to be assessed within 72 hours. Because that facility had no physician or dietician (or rehabilitation staff) on the weekend for things outside of emergency responses, that meant that he would likely not be seen until the very end of the 72-hour window: Monday morning.
There were no monitors for fall risk. No minders or sitters supplied. We could hire our own sitter. It’s unclear if they would adjust his diet based on our urging or what effect that would have on his care or the cost. Something? Nothing?
At the beginning of that 72-hour window, his blood pressure was above 140, which the nurse said was “fine.” At this point, my mother was beside herself with fear, guilt, and helplessness. Wasn’t blood pressue greater than 140 and sodium what the ICU care team had been concerned about? She came home that night sobbing uncontrollably that she had failed her husband and her children and she was afraid her husband could die that weekend from another episode of some kind. When Dad’s sodium intake increased, his blood pressure increased, which made him more cognitively impaired. (Also, recall that high blood pressure is what caused the stroke that he was trying to recover from. She was right to be afraid.)
So about this new facility: visiting hours were 10-7 Monday-Friday, 10-4 on weekends. Appointments were scheduled daily: one hour per person per appointment, in his private room (private room was something Mom had made a criteria in her fast research; we were fortunate that option existed not too far from their house. Based on the state of the room over the weekend with little attendents, I’m glad it was private). Appointments had to be scheduled at least an hour in advance. Maximum of two people at a time. Some &endash; but not all &endash; of this was due to Covid policies at the time, I’m sure.
At the same time, my mother was trying to plan post-sub-acute care next steps: Will Dad come home? Can she get a stair lift installed in their house? Should they stay in their house? Also, the follow-up appointment in six weeks needed to be made... with the doctor at the... ICU? Because there was no physician, no care team, that had been part of Dad’s journey through all of these phases. The ICU doctor was the closest thing to an informed care coordinator.
I’m leaving out a ton of details. I called eight facilities to compare their care plans, policies, and procedures. Because it was how I can help from a distance. My point with this story is to show how, though the care itself has been great, the handoff from facility to facility and the lack of any centralized care coordinator places the entire burden of care on my mother, on our family, and it does not have the best interests of the patient in mind.
Moreover, it places the burden of care on my mother at the time when she can bear it the least. At the time when she needs support and help deciphering this world and the future. This should not be her problem.
We are the richest nation on the planet. We have billionaires playing marbles with rockets. We have the best facilities in the world. And we treat our elderly like they have done all this before and it’s no big deal. We don’t make it as easy on them as possible in a time of crisis or stress. And we don’t spend the money to proactively care for people to avoid situations like this in the first place.
Instead, we react. And in that reaction, we get them out of a facility as fast as possible. And we reset their care team with every transfer, and hope the handoff works. We don’t follow up to find out. This lack of attention and continuity hurts costs, and this reactive posture is what drives them up (if cost is what you care about).
My Dad should’ve taken better care of himself for decades, no question. But this medical system generations have paid into isn’t setting any of us up for success. We need to demand better from our country. A healthcare system should not be a money-making enterprise. It should not be about costs per widget. It should be about good care. Personal care. Family care. Preventative care. Compassionate care for all involved.
We will all experience some level of personal tragedy in our lives. Why wouldn’t we spend our resources on making that minimal and bearable instead of cost efficient and profitable? When you are at your lowest point, knowing that a free market is alive and well is going to be the least of your concerns or comforts.
Anyone who tries to tell you that comprehensive healthcare reform is socialism or communism or some other such nonsense is ignorant at best and a liar at worst.