My Dog, Skip, Probably Has Better Healthcare Than You

My beloved Guinea pig, Reese, came home from the pet store with the rodent version of “kennel cough.”  We have been frequent fliers at the Vet as a result of this.  Thankfully, our Vet’s office is a fun place to visit.

When I call to book appointments, the service is prompt and the availability accommodates my work schedule.  When we arrive at the front desk, we are greeted with a warm welcome.  There is not palpable tension in the waiting room. Rather, a few smiles are exchanged amongst the visiting patrons.  Reese’s “white coat” anxiety is soon put at ease by the kindhearted Vet technician who spoils her favorite Guinea pig.

The Veterinarian’s examinations are thorough and careful to keep Reese as calm and comfortable as possible.  The Vet never rushes me through my laundry list of talking points saved in my phone, similar to my notes for my own healthcare appointments.  Instead, she actively listens and even expresses gratefulness that I have done my homework when it comes to raising a Guinea pig.

The cost of care is reasonable given the attentiveness and the results.  I do not cry at the pick-up counter of the pharmacy, as I am not sticker-shocked, vulnerable, or frustrated.  The pharmacist even adds extra banana flavor to make Reese’s medicine-taking process a little more bearable.

I received an email asking if I would like to sign up for an electronic health record (EHR) website, which will be personalized with Reese’s pertinent health information, photo, and Vet appointment schedule.  Although I am on the fence as to how necessary it may be to exchange all of that personal information considering that we will (hopefully) only make annual check-up appointments, I so appreciate that the Vet EHR is a possibility for Reese if and when we want it.  I cannot always say the same for my own human care.

^ The happy face of a creature who has easy access to empathetic care, and her own health information.

Whenever I visit a famous diabetes clinic affiliated with an even-more-famous Ivy League university medical center, the norm has become that it takes approximately six weeks to receive my lab results after the appointment.  While I have bemoaned this publicly on Twitter, I do not do so simply to hear myself talk.  This is not a unique situation to my healthcare experience, this clinic, nor other humans in the American healthcare system.  The plague runs rampant.  But is there really any excuse for it to keep spreading?

I am of the opinion that if said clinic’s nurse has poked the vein in my arm to draw blood, if I have lost my dignity by peeing in a cup and then holding it up to the light to squint– praying that somehow whatever is in that cup will be as okay as healthy-looking-urine can be!–, then I have earned the right to access my own medical information in a timely, effective fashion.  It is my data.  Who, what, when, where, why, and how I share it should be up to me, in an ideal world.

When said clinic advertises its new and improved EHR for years, only to continue solely updating occasional appointment reminders while the highly-acclaimed EHR remains devoid of labs and notes, something’s gotta give.  If this is happening in the “Mecca of healthcare,” where the biggest and the best EHR companies and universities spread their wings, how on earth can we expect the continuum of care and the quality that we know we are capable of achieving to improve healthcare?

This is not anyone’s fault in particular.  We have a healthcare system that remains convoluted and disjointed, no matter which political party attempts to restructure it.  We must ensure the utmost privacy while simultaneously allowing data to be useful and accessible- not an easy feat by any means, especially with hundreds of entities vying for this business.

My healthcare provider’s ultimate responsibility is to care for her patients.  If we are asking her to become an IT wizard on the side, we are asking her to make sacrifices elsewhere; ultimately, those sacrifices will come in the form of time lost treating patients with a high-quality level of care, which is contrary to what any good doctor stands for.

On the administrative side, more training needs to occur to ensure a smooth transition of care and patient data.  There will always be bumps in the technological road, but we cannot overlook commonsense.  For example, when a patient has blood drawn, either mail the labs shortly thereafter (in and of itself an archaic method of communication considering privacy and efficiency), or, use the #$%^*&@ patient portal to the best of its ability- to provide patients with the information they need to be informed and engaged in their health condition management.  Contrary to what the insurance industry may imply, we cannot scapegoat outcomes on patients and providers since we only provide rusty tools in their toolboxes.

“THESE ARE MY KIDNEYS!  I want to know- good or bad!” I dramatically proclaimed to my doctor when I finally got fed up enough to send an email requesting overdue lab results, circumventing the clinic and going directly to a source who cares enough to help. (Everything is fine, but it’s the principle of the matter.  If things were not fine, we want to proactively take action as soon as possible.  Lab results that are MIA for 6 weeks are a missed opportunity to intervene, and if we add up the totality of those missed opportunities and multiply it by the totality of the patients affected and the totality of the healthcare providers and admin. executives unnecessarily getting burnt out because we make this process unnecessarily harder than it was ever intended to be, well, you get the picture!!!)

My doctor answered my email pleas late at night on her day off, showing me she wants to make this situation with the clinic better for her patients.  She gets it, agreeing wholeheartedly that we need quick access to my health information in order to form the best game plan for treatment.  Much like Reese’s Vet, she listened and allowed me to express everything that I needed to.

The only way things are going to get better is if we continue to voice these issues and work together.  I believe strongly that clinics should hire firsthand patient consultants to come in and advise.  They offer expertise that cannot be seen without the lived experience, and their hearts are in the right place to make improvements for everyone who will come after them.  Many have professional and graduate level education experience in the healthcare field, further enhancing their value to this discussion.

Such constructive feedback can be a path that makes all healthcare players happy.  Costs may decline, quality may increase, outcomes may be better, human beings may spend more time living and less time surviving– and all from simple tweaks that do not require much investment aside from simply listening to those who are fighting for their health every day, and being open to changing accordingly.

Hey, humans!  Let’s get on the same wavelength as veterinary care, in which we hone in on empathy, communication, topnotch organization in our administrative duties, and a healthcare team that works together with living, breathing creatures of all backgrounds.  So, what do you say?

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We hear you.

Many thanks to Karen Graffeo of bittersweetdiabetes.com for organizing the 7th annual diabetes blog week.  For more information about dblog week, please see here.

I am not normally one to be short on words, but this week is a bit hectic for me.  (Head nodding along to Laddie’s great explanation.)  Karen has given me permission for stress-free participation, so here it goes!  🙂

Today’s prompt is the following:

“Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)”

I am in the diabetes blogosphere because my life is happier being in it than being outside of it, and I hope that in my own small, empathetic way I have given back to others by being a part of the #doc.

“Dblogging” is responsible for verbs such as, well, “dblogging.”  It creates a community of passionate healthcare advocates, a place to call home when diabetes tries to turn our worlds upside down, and hope for a better future.

The #doc has led to supportive friendships both online and offline, both in our own backyards and all over the world.

BetesOnTap selfie

It is an honor and a blessing to read the deepest thoughts and the most lighthearted inside diabetes jokes that each of you shares on your blogs.  Your companionship in the carrying of the diabetes cross humbles me to my core.

Very Light, No Sugar’s words go out to the diabetic online community.  I also hope that those words somehow reach the lonely, confused diabetic kid that I once was.  I hope that someone who is not yet actively involved in the #doc knows that he or she has a place to come home to when diabetes feels like a lot to carry alone.

I blog for my own emotional well-being, for the #doc friends who are like family, and for those who do not yet have a voice or do not know where to begin.  The #doc door is always open, and I hope that you will join us if you are ready and able to do so.

It may feel like the world is not always listening, but in the diabetes blogosphere, we hear you.

“Uh-huh.”

When I adopt my future child (see here), the phrase “uh-huh” will probably be worthy of a “Swear Jar” donation according to Ally’s Little Book of Rules.  (All proceeds will go directly to diabetes research- let’s chill out, please!)

“Uh-huh” offends me not because of what it says, but because of what it does not say.  It is an empty phrase which does not even pretend to hide its indifference.

I will be the first to admit that I tend to get overly excited about nerdy diabetes-related things.  I follow diabetes stocks and press releases on my cell phone, enthusiastically peruse the blogosphere, keep up with DiaTribe and DiabetesMine articles, and look for every opportunity to discuss the information I devour.  I have pledged to my doctors on many occasions that I will take a break from healthcare information overload, but it proves to be a difficult task when fighting for your health every day.  Diabetes and healthcare are interests which are inextricably intertwined with my very existence.  They are not the totality of who I am as a person, but they are passions of mine with very stubborn “off” switches.

However, diabetes and healthcare are not everyone else’s passions.  So when I am rambling on and on at happy hour about the latest blood glucose meter technology or that one time I ate the entire carton of ice cream during a nighttime hypoglycemic episode, I need to take a step back and realize that others may not be quite as into this stuff as I am.  Fair enough.  If I could be cured of diabetes tomorrow, I would jump at the chance.  Although I suspect that my interests in diabetes and healthcare may not subside once I am cured, I would not mind finding a new, less serious interest to take up some of my time.  Badminton, anyone?

“Uh-huh” is suitable if I am boring you at the bar with a story that you do not really care about.  “Uh-huh” is not acceptable if I am talking about something deeply emotional that affects my health.  Dexcom software upgrades are one thing, but my personal health triumphs and tribulations are quite another.  If I am describing a diabetes incident that spooked me or a frustrating few days of persistently high blood sugars, I am opening up to you because I want you to hear me.  I trust you.  I want you to value what I am saying as important, to empathize, to not pretend that you know the answers but to simply be there for me nonetheless. 

When you say “uh-huh” on the other end of the phone and change the channel on the television running in the background, what I hear is not “uh-huh.”  Instead, the message conveyed is, “I am sick of this same old story.  Diabetes sucks.  I get it.”  You know what?  It does suck.  And it may continue to suck.  It’s diabetes, and it’s a selfish jerkface.  Sure, I have experienced a rough year of diabetes transitions (insulin pumping to MDI to every emotion felt along the way), but I do not get to “uh-huh” away this disease.  I sure as heck hope that it is not especially difficult every day until there is a cure, but sometimes there are long stretches of time where diabetes is a royal pain in the a$$, whether or not we are talking about Lantus burn at backside injection sites.

We are all human, though, and I caught myself “uh-huh-ing” a friend last week.  My coworkers and I are working from home a majority of the time now, a nice perk for those of us who require multiple cups of coffee before we are properly-functioning each morning.  The downside to working at home is that we do not have one another within walking distance if we need help.  Recently, my friend (let’s call him Jason) called my cell to seek advice on a difficult case.  My blood sugar was a bit rocky in that moment, and I felt the familiar brain fog that accompanies those overtired, rollercoaster health days.

“I’m thinking if we use this regulation, I should be denying this issue,” he said.

“Yeah, but I just emailed you the updated guidance.  We can grant benefits only if that particular symptom is present, which it is here,” I replied, as we went back and forth with medical evidence and legal stipulations to try to make the right decision.

The more we interpreted the guidance on the case, the more I found myself nodding and saying, “right, right, uh-huh” as I clicked through online documents, only half-paying attention to what Jason was trying to tell me at this point.

Frankly, I had made up my mind about what we should do on the case five minutes earlier, and I wanted him to be on the same page.  Eventually, our viewpoints fell somewhere in the middle and we were able to move forward.

The moral of the story is that everybody “uh-huhs” now and then.  At times, I am guilty of what I am critiquing here, too.  So what are we going to do to fix this?

Society often incorrectly relates empathy to having actual experience in the particular situation occurring.  For example, a cancer patient can empathize with another cancer patient, but a person untouched by illness cannot offer any valuable input.  I do not personally believe this.  First off, every person’s cancer or diabetes or death of a parent or any other difficult cross to bear has its own nuances.  We are all different people from different backgrounds with different struggles.  But the common denominator is that we are all human beings.  Because of this, we all know how to empathize.  It does not mean that we have to experience carbon copies of one another’s pain.  Rather, we simply have to offer up messages of support.

Instead of saying “uh-huh” when I describe an aggravating diabetes day, say something like, “I’m sorry.  That sounds so tiring.  Let me know if you need to chat later.”  Please listen.  If I wanted to talk to an empty space, I’d jump rope to the beat of a diabetes jingle or throw a tennis ball against the wall while collecting my thoughts.  But instead, I have chosen to tell you, someone who is so important to me and my diabetes fight.

Acknowledge my pain, but do not feel like you have to magically erase it for me.  Do unto others as you would have them do unto you.  Nowhere in that verse do I hear the phrase “uh-huh.”

I pledge to support you in the same ways that I want to be supported- devoid of “uh-huhs” but generous in understanding.  If I do not know what to say, I will attempt to think twice before muttering an empty rationalization.  “At least it’s not XYZ” belittles the struggle.  Instead, I’ll speak the truth next time: “ABC is very difficult.  Please know that I’m here for you.”  We cannot suddenly cure illness overnight, but we can make a more concerted effort to see each other through tough times.

From now on, let’s walk together, instead of “uh-huh-ing” each other.  Promise?