To the 'Robo-Doc' at the Neurologist's Office Who Answers Emails
Bless your heart, you know not what you do.
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It’s been a hell of a year so far. Mom’s multiple sclerosis had plateaued for a few years. Yes, she had her share of infections, life-threatening sepsis, a diagnosis of dysphagia (difficulty swallowing) and complete and total loss of the use of all of her limbs, but for the most part, she was as I liked to say, “the picture of health.” Vitals were overall pretty good, she could still talk and enjoyed going on walks (rolls) in her wheelchair and talking to family over Skype. She still had an appetite, and all the important things looked OK.
And then 2017 started and it was all downhill. Years of brain damage from MS lesions and epileptic seizures has led to uncontrollable tremors and muscles spasms which, left unaddressed, drove her heart rate and temperature up. We had to sedate her and cover her with ice packs almost every other day. Attempts at treating these tremors involved blood tests, X-rays, CTs, starting supplements of potassium and magnesium, using CBD oil, and most recently, trying a muscle spasticity drug.
On top of all her seizure medicine, this spasticity drug took Mom out for the count. I’m talking complete and total fatigue, inability to talk, inability to open her eyes, and even falling asleep while she was in the middle of swallowing food and pills. Talk about rough!
The thing about chronic illness is that when you’re going through the thick of it like we were with Mom, you’re really relying on your prescribing doctors and care network to be there for you. To be listening, trying to help, Dr. House’ing the s**t out of stuff to help you figure out what’s going on, what’s happening, and what we can do to help Mom out.
Mom’s primary care physician is amazing. She listens, and Mom’s home health agency works closely with her to monitor Mom’s condition, get tests executed and treatment implemented as quickly and successfully as possible. Mom’s neurologist, on the other hand, is another story…
… and that’s what this story is about, or at least, his “robot.”
Mom has been seeing this neurologist for almost 15 years. He is well-acquainted with Mom, me as her caregiver, and our entire situation. We saw him a couple months ago and he was the one to prescribe the spasticity drug. We talked at length about the tremors and spasming, about how horrible they were and how we had to sedate Mom recurrently to control them. We agreed we needed to find a solution to help with the spasms but not knock her out too much. (This wasn’t the first time either – I was in contact with the office throughout the spring prior to visiting them with an appointment).
This is all preface to a message I sent through their online patient portal to let them know what was going on with Mom’s condition. I emailed them two messages as I ran out of characters, the first saying:
After starting Baclofen 10mg 2x a day on 4/26, Mom experienced a significant decrease in her ability to stay awake, eat, talk, you name it. She couldn’t even open her mouth when prompted to take her medicine.
She had a gran mal seizure at 7:30pm on Sat. 4/29, overheated to 101.9 degrees, was giving 4 mg of ativan
We stopped the Baclofen on 4/30 because Mom could hardly function.
We drove back to Austin on May 3rd and 4th. She got car sick the first day and threw up.
Back in Austin, she began to perk up a little. On May 8th she had a 1 min. gran mal seizure in her wheelchair, had 4mg of ativan
On May 10th, she experienced more spasming and non-seizure related tremors
A mobile x-ray was done of her chest and her PCP prescribed Levoquin starting May 12th (for 10 days)
We restarted her Baclofen (but only 5mg 2x daily) on May 10th
Since restarting she has experienced minimized spasming and tremors, heart rate fluctuates
And then I let them know there was more coming in a second email.
Originally, I received this odd reply:
After reviewing the message, it sounds like you are having trouble with your legs and walking, I see that you are asking for an EEG, but, was wondering if you meant EMG to assess the nerves and muscles in those areas?? An EEG would be more geared toward seizure activity. let us know, thanks
Naturally, that does not seem to be meant for me so I reply:
I believe you have replied to the incorrect email – your response seems meant for another patient. Please review, thanks.
Then I get this reply: (I have not touched the formatting, capitalization, anything like that — I replaced drug name.)
in looking at the story, I do feel that [spasticity drug] may be the problem here. you are on quite a few CNS active medications (for your epilepsy) and the [spasticity drug] may be one too many
better off to have some level of muscle spasm than the other problems described
That is their reply.
And I know, they’ve outsourced this work to a bot, a robo-doc who is scraping for keywords, seemingly lacking emotional intelligence.
It’s obvious to me this is probably not a doctor replying, not a nurse, and by the sounds of it, not anyone with familiarity of Mom’s history or any acknowledgement of her condition and what we are going through. It feels like a slap in the face. Anyone who says “better off what you’re going through than something else” seems to not be a trained medical professional and does not have any sort of understanding of how to work with a patient and caregiver dealing with chronic illness.
If whoever responded had any idea of the havoc “some level of muscle spasm” has wreaked this year! Mom is barely able to exist because of these muscle spasms – her heart rate spikes, her temperature leaps up, she has to be sedated, covered in ice packs, watched for hours at a time and monitored for seizure activity. She can’t eat, she can’t talk, she’s in pain and discomfort and anguish. “Some level of muscle spasm” is not an option.
It’s enraging that they’re outsourcing basic common doctor-patient courtesy/attention/care for God knows what this is. Your email responder may save you money and time, but please know that it limits your contact with patients, delivers bewildering and disrespectful replies like the one I received, and it makes patients feel like they are completely alone in this chronic disease.
But alas, robo-doc, it’s not your fault. You know not what you do.
It’s when the people whom the most vulnerable patients rely on turn on those patients, employ machines and automated messaging to handle their concerns and questions, that’s when I believe we’ve hit a breaking point in healthcare.
I’m flabbergasted, astounded, and oddly amused by this reply I received today. Is it even HIPPA compliant? I feel like I need an answer to what is going on.
Can you care so little for Mom that this semi-developed machine can decide whether or not we continue a prescription? Can you care so little for Mom that her future may be influenced by someone who has no previous medical history or understanding of her situation, her care, or her condition?
Well, I know I won’t let it.
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