At The Meadows, David had been assigned a care manager, a nurse who oversaw his day-to-day treatment and monitored his condition.  Because the hospital, neurologist, urologist, and palliative care physician were all part of one healthcare system and The Meadows was not, information moved back and forth between The Meadows and his doctors on handwritten forms or in my head.  If David had an in-person appointment with a doctor, a staff member at The Meadows handed me an envelope when I came to fetch him.  It traveled in my purse to the doctor’s office.  The doctor took out the form, read the handwritten information, wrote down the medication changes or other relevant information, put the form back in the envelope, and handed it back to me.  The envelope rode in my purse back to The Meadows, and I handed it to the staff member who met us at the door. 

If David had a telehealth visit, I was the conduit for the after-visit report.  I took notes during the appointments and compared them with the after-visit summary posted in the electronic portal.  Then I told the care manager what medication changes and other treatment guidance the doctor had recommended. 

No wonder caregivers of people with LBD worry about competence.  I have no medical training, and I wouldn’t trust me to give an accurate and thorough account of a doctor’s appointment.  Preoccupied with getting David safely out of the car and into The Meadows, I once forgot to hand in the envelope – so I had to scan and send it when I got home.  That means, of course, that I transmitted medical information by regular email, no doubt violating all kinds of HIPAA rules.  (Does carrying the forms in my purse violate HIPAA rules? No idea.)  That’s just further proof, though we need none, that I’m not a trained or reliable conduit of medical information. 

Type “EHR interoperability” into your search engine and you’ll find that this problem probably won’t get solved anytime soon.  Electronic health records reside in proprietary systems that don’t communicate well with each other.  Carrying handwritten forms back and forth in my purse may have been the most efficient and effective solution to that problem.  Depending on a caregiver to relay medical information is quite another matter.  I could wait for the after-visit summary to be posted in the electronic portal, and then I could print or copy it and send it to the care manager.  But I could do that only because I had a device I could use for access to the portal, and I had experience finding and using portals.  What happens when caregivers don’t have both access and experience?

The medical chain of information is only as strong as its weakest link.  I was always aware that I was the weakest link.  I was the link that might say “rivastigmine” when I meant to say “memantine” or might forget to relay the report at all. 

Oh, you can tell that I’d probably remember to send the report.  If I forgot on a busy day, I’d probably remember to do it the next day.  But as I’ve said before, I was in easier circumstances than many caregivers are.  I was responsible for only one vulnerable person, and The Meadows staff managed David’s minute-to-minute care.  Also, as I’ve said, I had a good laptop, reliable internet, and enough experience with software to figure out the electronic portal.  It doesn’t take much imagination to picture someone with more caregiving responsibilities, a zero-hour work contract, unreliable broadband access, an unwieldy digital device, and no training or time to learn to use the electronic portal. 

I don’t envy doctors, but they do get paid a lot compared to the “informal” caregivers with no medical training who manage complex conditions, make treatment decisions, and relay information between the medical professionals and others who provide care.  Some of that responsibility surely belongs to the medical professionals – and I suspect that they’d be happy to do it, if only their administrators would allow them the time and if only they could extricate themselves from endless charting.  But they don’t do it, and a life hangs in the balance, so we try to do it, and we get paid squat.