Phone Calls To Tongueless Men
If you can't speak for yourself, how do you get people to hear?
In the weeks after Jake had his entire tongue surgically removed, his phone wouldn’t stop ringing. He’s a friendly guy who gets to know a lot of people, but I’ve never seen him reach this level of celebrity; I half-expected paparazzi to spring out from the closet, flashbulbs popping, shouting demands for a smile and repeating the barrage of caller questions: “Jake! Jake! Over here! How are you settling in at home? What needs to be ordered? Are there any services you would benefit from?”
Jake’s surgery was performed at the Mayo Clinic Phoenix, whose ENT department performs a large number of complex surgeries, many of which remove patients’ entire voice box, so you’d think the people calling from the ENT department (the department responsible for cutting out his tongue) would be aware of the potential pitfalls of calling to speak to a tongueless man with a tracheostomy hole in his neck diverting air from his vocal chords. It’s like an army general being surprised that rifles are loud. ENT was in good company, though, since we also fielded calls from scheduling, nursing follow up, physical therapy (PT), occupational therapy (OT), home healthcare, medical suppliers, and insurance—all insisting that they must speak to Jake, as if their own lives, not Jake’s, depended on this impossible demand.
When case management called, I felt momentary relief, figuring they’d take over the project management job that had fallen to me—but no, they only wanted to speak with Jake, as well. “But you’re case management, aren’t you supposed to be managing all this?” I asked, and they laughed. I wasn’t trying to be funny. I can’t even remember what they wanted, but it wasn’t to manage Jake’s case.
Because these were healthcare-related calls, we ran into legal and bureaucratic challenges immediately. Most went something like this:
Me: Hi, this is Jake’s wife. He can’t speak because he just had his tongue cut out, but I can talk.
Them: I understand, that’s fine. We just need his quick verbal consent allowing you to speak on his behalf.
Me: But he…can’t speak.
Them: I’ll hold.
Me: I don’t mean he can’t speak right now. I mean he can’t speak at all. He has no tongue.
Them: Is there a better time to call back?
Me: Not really, he still won’t have a tongue later, but I can speak with you.
Them: Sure, can we get his verbal consent first?
I asked my friend R., who is a lawyer, if logic questions like this ever make it onto the LSAT admissions exams. “Yes,” he said, “if you say that question seems reasonable, then they let you become a lawyer.”
Calls begat other calls like rabbits beget rabbits. Once the calls immediately concerning Jake’s medical care and health status concluded, we got additional calls from the hospital to query about the quality-of-care Jake had received or was receiving. Then, we started getting calls about the quality of the calls about the quality of Jake’s medical care. Still with me?
Between fielding phone calls, I was busying myself with keeping Jake alive, including tracking and administering medications on time, caring for his trache tube (to prevent infections that could be fatal), PEG tube, surgical site, and the ever-important job of staring intently at Jake while he slept to make sure that he continued breathing, an act of magical-thinking that I only took a break from when I passed out, or when I had to run to another room to get the ringing phone I’d foolishly removed from my pocket.
As my worry, delirium, and sleeplessness mounted, and the phone calls showed no sign of abating, conversations became increasingly absurd; I started to feel my already tenuous sanity chipping away with each ring:
Me: Hi, thank you for calling back, yes I would like to schedule a home healthcare appointment. No, Jake can’t speak. He has no tongue. Sure, I can bring the phone to him. Ok, you’re on speakerphone.
Them: Hi Jake! If you give us consent we can talk to your wife.
Jake: Claps twice
Them: We have to hear you give verbal consent.
Jake: turns the suction machine on high and points it at the phone, which makes a wet, uncomfortable slurping noise.
Them: I’m sorry I couldn’t understand you.
Me, assuming a false baritone: Sure you can talk to my wife!
Them: Ma’am that was you.
My favorite conversation coincided with the day I hit the rock-bottom of frustration:
Me: Thanks for calling back. No, Jake still can’t speak.
Them: We’ll be quick. Can we get his verbal consent?
Me: No, sorry, we have a cat.
Them: A what?
Me: A cat.
Them: Can you bring the phone to Jake so he doesn’t have to get up?
Me: The cat isn’t on Jake’s lap. The cat HAS IT!
Them: Has what?
Me: His tongue!
Them: The cat’s got his tongue?
Me: Rings the loud brass bell
Jake: Rings the loud brass bell.
Dialtone.
One painful thing is that the many people calling were well intentioned. They wanted to do the right thing! But they’d been set up in a rigid system that didn’t and, as far as I know, still doesn’t conform to the disabilities of the patients within it.
Lest you think we lack creativity or sympathy for the callers’ obligation to medical privacy, we suggested substituting rhythmic communication. I googled the morse code for: “My wife can speak for me”, which translates to:
-- -.-- / .-- .. ..-. . / -.-. .- -. / ... .--. . .- -.- / ..-. --- .-. / -- .
But if you thought Jake and I were agitated by the requests that he bark on command like a trained seal, it paled in comparison to the lack of patience exhibited by callers who’d hang up before Jake could get through the second round of dots and dashes. For people who had the tenacity to keep calling and ask the same unanswerable question, they had a very low tolerance for what we thought were clever work arounds.1
If you think this sounds invented for comic effect, you’re not alone. When I relay these stories to friends, they ask reasonable questions: Why not contact Jake by text message or a chat box online? If customer service for Amazon can do it, why can’t a large academic hospital, with a sizeable endowment, find better ways to communicate?
I broached that question on one of my many calls with the ENT department. “We know it’s a big problem,” they said helplessly, “But we haven’t been provided a way around it.”
It’s not that the tech doesn’t exist—AOL chatrooms have been around since the late ’90s2—but adopting tech in healthcare is a bit like asking someone to learn a basic programming language, but refusing to give them a computer until they get 100 different petition signatures and wait for a law to pass saying that the CIA approves of them typing. There will have to be a meeting, and then a meeting about the meeting and maybe, in a few years, the hospital will have a meeting about implementing something, as long as it doesn’t cost too much.
Illness is dehumanizing, and we could alleviate some of the dehumanization through technology. Healthcare has less of a tech innovation problem than a tech adoption problem, and what healthcare embraces often perversely adds to the burdens of healthcare providers. Electronic medical records were a federal requirement made in 2009 (with compliance required by 2014). And yet, since 2014, I’ve never worked at a place at which the EMR improves the doctor patient relationships; if anything, EMR requirements forces physicians away from patient care and in front of a screen, spending on average 4.5 hours a day clicking boxes and entering patient information.
The only way to streamline the process is to chart while seeing the patient, which means making eye contact with a screen full of clickboxes instead of the patient who deserves full attention. I’d love to have a more human and humane experience, but then who’ll fill out the forms? Are you going to? Maybe AI will, in the future, but in the present a human must.
Filling out the EMR is the second-most-important part of modern medicine, behind billing insurance. When it comes to hospital-based metrics, physicians are evaluated on how quickly their charts are completed—No chart? No bill—but not on whether they felt that the required time charting could’ve been better spent on actual patient care (spoiler alert: it could have been).
EMRs were supposed to make sharing patient information between hospitals easier, but specialized programs are often needed to share charts, and, depending on the EMR company used, sharing can be difficult, if not impossible. Signing a release to share information through an EMR record exchange like Care Everywhere doesn’t help if the records are at a hospital utilizing a different exchange program or EMR than the requesting hospital.
EMR access also isn’t shared with most medical suppliers and third-party home care, PT and OT, which is why we got the relentless phone-call barrage from people who knew Jake needed something, but didn’t know what or why. Their understanding was limited to the data shared with them, which, because of how HIPAA laws are interpreted or implemented, was incomplete. I’m reminded of the story of the blind men and the elephant: each can touch a different part of the elephant, but none perceive the whole animal. Non-hospital entities asked to speak with Jake not to mock us, though it started to feel that way, but because they didn’t know he couldn’t. The people who called us were never the problem. The problem is Moloch.
Instead of the slick AI assistants being peddled online with the frequency of multilevel marketers at a high school reunion, you may have noticed that obsolete tech still enjoys its glory days in the medical field: pagers are ubiquitous, brick-sized mobile phones that only work within the perimeter of the hospital and, of course the fax machine, ostensibly because it’s the most “secure” way to send patient information. So much for the seamless integration of EMRs. I have a fax app on my phone for the sole purpose of being able to fax things from my fax app. When I receive things by fax they’re sent (unencrypted) to my fax app, which also sends a copy (unencrypted) to my email. This is considered HIPAA compliant, even though sending information to or from my e-mail directly somehow isn’t. It’s security theater akin to a public TSA patdown. The extra steps are redundant and time consuming, especially when email encryption programs like Hushmail for Healthcare—which is HIPAA compliant ant 24.99/month—exist.3
A combination of clunky EMRs, strict health information privacy laws, and poor tech acts to prevent patients from receiving streamlined care, instead of facilitating it.
I’ve heard rumors that a year ago some hospitals got a secure chat upgrade in EPIC which allows them to not only discuss a patient’s case with other healthcare workers, but message the patient directly, though I’ve never met a doctor who’s actually used it. Chime in in the comments if you’re one of those doctors, though it may be a legend, like El Chupacabra.
MyChart allows patients to leave messages instead of calling, but it lacks a real-time component, and responses can take 24-48 hours. Other HIPAA compliant and encrypted options like Rocket Chat, Secure Chat, and Tiger Text could be reappropriated to allow anyone on the healthcare team to text a patient. Not having a communication plan for a patient who is about to lose their voice is like sending someone home after cutting off their legs and refusing to give them a wheelchair. Sure, they could drag themselves on the ground using their arm, but there are probably better options.
Let’s say Bess wasn’t helping me, how would I handle those calls?” Which is another way of saying: “If Bess wasn’t here, how would I have made appointments, scheduled home care, ordered the necessities that kept me alive? How would I have found a clinical trial and called the investigators and established care? How would I have had the hundred of conversations that are the reason I’m still breathing?
Jake’s told me that, without me, he would’ve pushed enough opioids to resolve the problem forever. His life was that hard. Given what I saw, I can’t blame him for contemplating the dark path. Without someone to do comprehensive case management and act as his home health supervisor, Jake would be dead. Jake losing his voice wasn’t a matter of inconvenience, but of life or death.
I often wonder: How does anyone do this alone? when discharging patients without family support, or sick, elderly patients who are alone and don’t qualify for nursing home placement. Now I know the answer is: they don’t.4
As Jake recovered from surgery, lack of a voice wasn’t the only problem. As he became more alert, it was important to me that Jake not feel helpless. In the ER, I see how lonely and enervating illness can be.5 Although he’d lost his tongue and a large part of his left thigh, which was used to make the inert flap that replaces his tongue, he wasn’t an invalid. He had the capacity for thought—or as much capacity as any man does6. Lack of text-based communication options wasn’t solely a safety issue, but one of self-actualization.
Jake struggled to live with his new deficits, but, sadly, the healthcare system struggled to deal with them, too. A 2021 study in Health Affairs found that “Only 40.7% of physicians were very confident about their ability to provide equal quality care to patients with disability, just 56.5% strongly agreed they welcome disabled patients into their practices, and 18.1% strongly agreed that the health care system often treats these patients unfairly.”7
You never know how you’ll respond to a crisis. I’ve written about the ways that Jake and I have turned inwards toward each other since his surgery: mostly out of love, but also out of fatigue. Interacting with other people is exhausting. Jake’s hard to understand, and even a voice-to-text app, or having me repeat what he’s saying, adds a layer of frustrating latency to what would’ve, pre-cancer, been quick, easy, conversations.
Jake has written that people also hear his slurred voice and assume he’s mentally disabled. Being with each other is easy when so little else of life is. Even though I hear Jake and understand him, I alone can’t make up for everything he’s lost, no matter how many calls I make. Dependence on me, while not a burden, is still precarious.
Last month, I realized how vulnerable Jake’s situation is by losing my voice, too. I had minor surgery to remove a cyst from my vocal cord—evidently, Jake and I are trying to keep every ENT in Arizona in business. I kept putting the surgery off, because I was afraid of two things: the surgery damaging my voice, or that Jake may suddenly need care urgently coordinated while I’m on mandated voice rest.
His survival has depended on my ability to talk, which the cyst itself threatened, so I timed the procedure to correspond to a nadir in calls: when I got the procedure done, Jake was stable on the clinical trial drug, he didn’t have scans for another few weeks, and his appointments were scheduled for the next two months. I couldn’t even squeak. In an emergency, I’d only be able to whistle.
When I got home from the cyst-removal surgery, my days with Jake were as easy and comforting without words as they are with them, although we learned that Jake’s terrible at charades: no amount of pointing or miming could get my point across better than a pad and paper. Nobody’s perfect. It seemed like the week would go smoothly enough. We’d stay in our bubble and read, cook, relax, and just be silent. Then the blasted phone rang.
This time it was for me:
Them: Hello, this is Valley ENT, is Bess there? We’re calling to schedule speech-therapy follow up.
Me: whistles a little hello tune.
Them: hello?
Me: whistles and claps like one of those toy monkeys with brass symbols
Jake: Bess can’t speak right now she just had surgery. I’m her husband and can speak for her.
That’s what I hear Jake say, but, of course, Jake is slurring and dropping phonemes that require tongue motion. The caller can’t see Jake’s lips move and isn’t used to hearing people without a tongue.
Them: What? Hello? Are you there?
Me: Whistles again. Vigorously.
Jake: Bess can’t…
Dialtone.
Maybe I should have played a kazoo for the callers instead?
Luckily, I got a text alert with an assigned appointment time, asking if I wanted to check in online, though there was no online option to reschedule and the number that texted me didn’t accept replies. The time was good enough, or at least, it had to be, since I had no way to change it.
If you can’t speak for yourself, how do you get people to hear?
If you’ve gotten this far, consider the Go Fund Me that’s funding my husband Jake’s ongoing cancer treatment.
This is not the first, and won’t be the last, time I’m told that I’m not as clever as I think I am.
Would patient identification questions be improved if they began with Age/Sex/Location? (If you’re under the age of 40, this joke may not be funny. The internet was a weirdly homogenous place back in the days of 50 websites, so everyone understood the same references. There was no Instagram, the only dancing you got was mushrooms and badgers. Anyway, “I’m old” is the point, let’s move on.
And then there is the struggle to share Jake’s CT scans between institutions. DVDs shipped by mail still play a role.
This may be the topic of another essay.
Most patients don’t have kinds of beautiful experiences described in “Love has won: strangers, lovers, and the doctors who bet on them in a NYC ER.”Most patients don’t have kinds of beautiful experiences described in “Love has won: strangers, lovers, and the doctors who bet on them in a NYC ER.”
Kidding. Kidding.
The Americans with Disabilities Act (ADA) doesn’t solve the problem. ADA laws require wheelchair accessibility of doctor’s offices, hospitals, and clinics by having wide entry doors and rooms that allow for free movement, as well as assistance in getting onto exam tables and other necessary areas for exams. For people who can’t hear, the ADA places responsibility for providing effective communication, including use of interpreters, directly on covered entities. Meaning, a patient doesn’t have to provide their own interpreter. But no law directly protects and serves patients who can’t speak. Although partial solutions exist, no one told us about them! It’s possible to use an accessibility feature on cell phones and call a TTY relay during business hours, which allows the caller to text a third party who speaks for the caller . Maybe it’s not HIPAA compliant? We’d have signed a release form. It would have been nice to be told about it for non-sensitive calls. Also, can’t the hospital get cell phones and text? What about trained carrier pigeon?
Ugh. So if we ever have our tongues surgically removed, we should pre-record our consent for an intractable system, the way we bank eggs and sperm pre-op.
I'm sorry for you two and all others enduring this. Thank you for literally giving voice.
Bess, you are a brilliant writer! As a fellow ER doc, your writings bring me to reconsider how speedily we dispense with human considerations in the "Meet 'em, greet 'em, treat 'em and street 'em" conveyor belt which passes for health care here. Thank you.