RIP Jess Jacobs (#UnicornJess): The Healthcare System Wasted Her Time, But She Inspires Many to Fix the System


A while ago, I found this blog post by Jess Jacobs about a hospital wasting her time. I think it was probably shared by our mutual friend, e-Patient Dave deBronkart.

As sometimes happens around here, I find something really compelling and well-written and I forget to share it on the blog. That happened this time (although I did share her story on Twitter, for what it's worth).

I feel bad about not having shared this aspect of her story, as I learned the other day (this time, I know it was through e-Patient Dave) that Jess passed away at age 29.

I never had the chance to meet her, other than a brief back and forth on Twitter in 2014, but it seems we knew many people in common in the healthcare improvement world, in which she worked as a professional AND faced as a patient.

Here is an article from MedCityNews about her death and what conditions she fought.

Jessica “Jess” Jacobs, a young but accomplished director in Aetna's Innovation Labs and a dynamic advocate for herself and other patients, has died. She was 29, sources said.

Jacobs fought a rare autonomic disorder called postural orthostatic tachycardia syndrome (POTS) and another rare hereditary disease of connective tissue called Ehlers-Danlos Syndrome (EDS). Friends labeled her a “unicorn,” based on the long odds against having two such uncommon diseases.

Jacobs died Saturday in California. She had moved back to her home town of Twain Harte, California, from Washington, D.C., in June to be closer to her family.

Screen Shot 2016-08-15 at 12.41.35 PM
Photo courtesy of Dr. Ted Eytan (he's on the right, with Jess Jacobs in the middle).

You can also read tweets about her, with the hashtag #UnicornJess.

Before I write more about her post, there are some heartfelt remembrances online, including this post by our mutual friend Dr. Ted Eytan (listen to my podcast with him from 2007).

Remembering Jess Jacobs

Ted eloquently writes about Jess and the sometimes ridiculous nature and details of our health system, including his observation, as a resident:

“…the medical resident in charge of our education and safety taught us the acronym “NMP.” It stood for “not my problem,” uttered after a beeper page was responded to about a patient that was not under our care… Much of the death and dying was occurring in the souls of the nurses and doctors in that hospital… Some were already dead inside. We all grew up with that “not my problem” message in our heads, and the struggles changed but persisted in other forms, so “not my problem” became the attitude.”

We all need to take up the fight against the aspects of healthcare that are soul crushing for patients or healthcare professionals… even if it's “not our problem.”

Ted writes about Jess being yelled at for wanting to leave her room to go to Starbucks, with an IV pole in tow. But, there are, of course, moments of kindness. As Ted writes:

“It seemed that the lower down a person was in the hierarchy, the kinder they were.”

This seems to confirm that if a hospital seems like an uncaring environment, then that's a systemic problem that's created… not the result of uncaring front-line staff.

Ted adds:

“When people accept poor treatment as normal, such treatment gets codified as normal, and complete ridiculousness ensues, across the entire swath of the health care environment. The patients die, and so do the doctors, nurses, and staff, slowly, over time.”

Ted lovingly calls Jess a “misfit.” It's the misfits who make enough noise to help make change happen. I admire that and celebrate it too. It sounds like Jess shared a lot of “dirty laundry” about the waste she saw in the healthcare system during her time, like this:

As Ted wraps up his post:

“Jess was destined to be a misfit. She attracted a lot of other really smart misfits. They/we were unable to save her. She made sure that we learned a lot on our way so that we could save others, and ourselves, from “not my problem.”

Health care will thank her later.”

The first post I saw about Jess's passing was by Mandi Bishop:

For Jess Jacobs: Friend, Fierce Patient Advocate, and Mythical Unicorn

In the photo of her, I see one of those other mutual connections, Sean Carey, a Lean champion and advocate.

Mandi writes:

“Jess was wonderful at telling her own story of life as a chronic patient. Her hospital admissions, doctor visits, and encounters with insanely insensitive airline and grocery store parking lot people frequently became fodder for live-tweeting sessions that reverberated throughout online healthcare and patient communities. These tales, unfolded in 140 character vignettes, were simultaneously tragic and hilarious. Revisiting her Twitter feed today, I'm struck by how truly FUNNY she was, even as she was facing injustice and indiginity that would have enraged Mother Theresa. Her way of screaming about the horrors she faced as to be snarky as hell. And we listened.”

I've been fortunate to be healthy… when I'm at the doctor for something relatively routine, I get upset and snarky (and sometimes tweet) about waits and minor indignities.

That's why this one particular post by Jess resonated with me so much:

On Wasting My Time – The Numbers

I read somewhere that she was a Lean Six Sigma green belt (she describes herself as “a numbers person”), so I appreciate her looking at the process and collecting data. I've done the same thing — again, thankfully, on a much less frequent basis.

First, Jess summed up all of her inpatient stays and outpatient visits and categorized them as “useful” or “useless.”

Screen Shot 2016-08-15 at 4.03.08 PM

Her definitions of “useful,” as you can read in her post, remind me of Lean definitions of “value added” and “useless” sure sounds like “waste” to me. That's a pretty dismal percentage of “useless” visits. The healthcare providers all got paid, I'm sure, for the “useless” stuff.

Jess also documented detailed breakdowns of what percentage of time was spent, for example, in the waiting room versus being seen by a provider.

I did my own summary for her outpatient visits:

Screen Shot 2016-08-15 at 4.08.23 PM

24% of the visit totals were spent with a nurse, student, or physician. That's not a very high “value added” percentage.

She wrote:

“The most egregious offenders here are GI, Psychology, and Rheumatology, all of which have, on average, three hour wait times as they routinely forget I'm physically in the office waiting for them and/or cancel my appointment without calling me.”

The value-added ratios are even worse for E.D. visits and hospital stays.

Jess wrote:

“On average I wait 20 hours to get a bed in the hospital… [and once] spent 27 hours in a hallway (with a pulmonary embolism).”

And I saw tweets where she complained a lot (and rightfully so) about discharge delays.

Later in her post, she does reference Lean and the idea of “value added.” She also, correctly, points out that SHE is the customer (emphasis mine), but healthcare often loses sight of that, sadly.

She calculated the value-added percentage for outpatient visits to be 16.6% and 1.7% for inpatient care.

One comment of hers:

“The only reason Primary Care received any value attribution is because I need someone to renew prescriptions for anti-nausea drugs, letters for FMLA, and send records to hematology. I feel bad that their years of medical school and residency are being wasted on purely administrative procedures.

It's touching to see that a patient can feel bad for people working in a bad system. The Lean notion of “Respect for People” means, in part:

  • Don't waste the patient's time!
  • Don't waste the providers' time!!

Patients need to be better cared for, physically and mentally. The system shouldn't wear down patients and break them, the way Dr. Eytan described healthcare professionals being broken by a bad system.

Jess added:

“…you could argue that time spent stressing over potential central line infections from sloppy nursing… developing a kidney infection due to inattention and disregard… should count as iatrogenic harms”

And I'd agree with her argument there. I hate to criticize her for slipping into the language of blame… it's so easy for all of us to do… blaming “sloppy nursing” instead of remembering, again, it's good people in a bad system that leads to mistakes and harm.

Her conclusion to the post is powerful:

So yes, I owe the medical system my life for giving me blood when my hemoglobin drops deathly low. But there's no reason a 4 hour transfusion required 84 hours of negotiation and frustration. There's no reason that only 4.75% of outpatient visits and .08% of my hospitalizations are spent actively treating my condition. There's no reason that I spent two solid months (1540 hours, 64.2 days) of this year waiting instead of healing.

So, please, stop wasting my time. Stop wasting my life.”

I hope her blog stays up. Another post to check out: On the Worst Healthcare Experience of My Life (with the awful detail of “my roommate's bloody vomit sat clogged in the sink for three days before someone came to plunge it.” — and it somehow gets worse).

I'm sorry I didn't get to meet Jess… I'm glad that some of my friends and colleagues did… but I admire what she brought to the healthcare improvement discussion. My deepest condolences to all who knew her.

Rest in peace.

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  1. Neutron Jerk says

    I’m saddened by this news… and the mistreatment that Jess suffered through along the way.

    I hate to ask, but was her death caused by or hastened by some form of preventable medical error caused by bad sysetms? We’ll probably never know.

    My deepest condolences.

  2. Jesses Friend says

    Good post but it is odd that people who didn’t know her or even tweet to her in the last few years are now writing blogs and articles about her? It could be really powerful to get her message out but it feels like she is being used in a way ..

    Other people who were never there for her are now suddenly talking about her very very public blogs and tweets because she died? In her last hospital stay only 1 or 2 people even “liked” her tweets and only 4 or 5 talked to her (although she often used DM’s with her friends)

    She was mistreated while alive not when she died (at home)

    It is starting to feel like she is becoming a meme or a martyr which she would have hated or in some cases people seem to be using herself-promote vs spread her message? Let those of us who were her friends grieve in peace

    1. Lorrie says

      I did not know Jess and did not learn about her until after her death sadly. I only recently found out about my own EDS. I spread her message now because her story is my own. I work in helathcare also so I can totally relate to her unique perspective. Let me tell you this, even if some are using her story for self promotinal purposes, this information needs to get in front of as many eyes possible to help break the horrible cycle. I think you are wrong about how she would feel.

  3. Bernard Farrell says

    Thank you for bringing attention to this.

  4. Jared Pilbeam says

    I used to work for the company that made the infusion pump in the one picture (Baxter Healthcare). I worked in Complaint Management, which taught me so much about learning to listen to others, and to push for improvement. I’m so sorry to hear about her passing, may she Rest in Peace. Her story is quite inspirational.

  5. Lean Learner says

    Thanks for sharing this story. I didn’t know Jess but am inspired by her life. I hope other healthcare professionals have a chance to read this and learn from her remarkable life.

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