I wrote this in March of 2020. My sister-in-law, Natalia, was hospitalized, probably with Covid. Despite a one week stay at the hospital, she never tested positive. It’s an eye-opening example of why we need to have someone advocate for us, communicate in our stead, when our health is at risk:
Natalia has been hospitalized since Sunday, March 29 and it’s been a real eye opener for all of us.
I have complete faith all of our wonderful health care workers are making every effort to meet patient needs as best they can with the limited resources at their disposal. As if the job weren’t hard enough or dangerous enough, they’re trying to follow health guidelines that seem to be evolving by the minute.
As soon as we suspected Natalia might be too ill to tough it out alone, I called the state Covid-19 hotline and triaged her through the nurse there: the RN advised Natalia needed to be seen in Urgent Care ASAP.
Olga took Natalia to Nextcare on Menaul, an urgent care center we’ve been relying on lately to avoid long waits in ERs. They heard diminished capacity in the left lung and told her she needs IV antibiotic right away and sent her to the ER.
Arriving a few minutes later at the door of the ER though, two nurse screeners ignored the urgent care notes and instead called into the hospital and were told to advise Natalia to go home and self isolate.
Fortunately for Natalia, Olga was with her and wouldn’t take no for an answer. After some frustrated demands to be seen, the screeners called back into the ER and requested a nurse come out to screen Natalia. Meanwhile, a different nurse listened with a stethoscope, immediately recognized Natalia was is bad shape and took her in right away. She was admitted to the hospital almost immediately
However, without a patient advocate present, things went wrong almost immediately. The blame for that falls primarily on just how much Covid-19 has messed up the norms we call “Standard of Care.”
First of all, she wasn’t allowed to have anyone with her in the hospital and still is not allowed to have anyone there. This isolation process is for the best, but it can lead to bad outcomes.
We called the ER right after she was taken in, but were told we wouldn’t be able to speak to anyone due to HEPA restrictions. We were speaking with a receptionist and he was clearly reciting a script someone had provided him.
I hung up and we called Natalia on her cell phone instead and eventually spoke with the doctor when he entered the room. He was very helpful and perfectly willing to speak with us, but he could have just as well argued he wasn’t comfortable doing so. For that situation, we have a power of attorney form we have on file at the hospital should Natalia become incapacitated, unable to speak or run into someone unwilling to be cooperative in communicating with us.
The hospitalist eventually called us around 2:30am and was very informative and had a great bedside manner. Treatment options were mapped out, we were informed, choices were made and Natalia felt like she was in good hands.
Around 6:30am we called her again and I heard right away that Natalia was slurring her speech and unable to answer questions coherently. Most people would assume fatigue, but I’ve been on tour with this woman for a decade now, and she never sounded this bad. I called the charge nurse and explained that she was clearly deteriorating for some reason, most probably because she wasn’t on oxygen. The nurse and I discussed our options; perhaps the next course of antibiotics would perk her up or perhaps it was a good idea to start her on oxygen. The nurse had assumed Natalia was just groggy from sleep deprivation and fatigue from the pneumonia. We decided to do both and we got confirmation of that within minutes by calling Natalia.
Right after she was started on oxygen, she perked right up and was her usual self. The nurse pointed out she had no base line for what to expect from Natalia and of course she was correct: how would she know how Natalia behaves normally? We were the ones that provided that important information. Natalia was too busy trying to breathe to think about it.
Over the last few days we’ve had multiple calls with nurses and doctors as we track the improving situation. There’s often confusion because not everyone hears the same thing: the doctor said this but I think he means that. Really? Let’s ask and make sure.
I really believe Natalia is getting very good health care. The unfortunate reality is that ALL health care is based on communication and current circumstances make that difficult, though not impossible.
If you believe that you or a loved one might be hospitalized, and I do believe that’s a safe assumption, like having car insurance despite your amazing driving skills that guarantee you’ll never be in a wreck, I suggest you consider these things:
Have a power of attorney drawn up to give to the hospital before you leave home. Get a signature on it before you need it. Request one at admissions if you didn’t get one, write it out by hand if necessary.
Remember that doctors and nurses might not be able to talk to you: Print and sign several copies of a power of attorney and make sure it gets into the chart.
We’ve been very fortunate to interact with doctors and nurses willing to speak with us absent a POA. Not everyone will be so willing to trust you as you assure them that you’re authorized to speak with them about the patient they’re caring for. How can they be sure they’re not violating a patients trust or right to privacy? If you can’t put together a POA quickly enough, scribble it on a paper and hand it to the nurse. I’ve been very impressed by the flexibility everyone is showing in this situation, but it’s best to give them as much guidance as you can to make their job easier. There will be less hesitation and treatment can start sooner with real confidence your loved one is receiving the best possible care.
Don’t forget a phone and a phone charger. They isolated Natalia and seemed to be afraid to enter her negative pressure room. They tried to avoid contact as much as possible and that made communication difficult to say the least. Don’t assume you’ll have access to a room, a phone or a nurse to bring you a phone. The health care staff are fighting multiple battles simultaneously and your phone call won’t be as high on their priority list as it is on yours.
Wear warm clothes and dress in layers. I’ve spent far too much time in hospitals and I can assure you they’re almost never the right temperature.
Assume the stay will be a long one. If there are things you think others should know, please add a comment below and I’ll add it to the text here.
I suggest you read this too:
https://www.verywellhealth.com/the-wise-patients-guide-to-being-an-empowered-patient-2615075
