Remembering Jess Jacobs

This is the song that came on as I wrote this, feel free to play it as the soundtrack to this post.

Look for the girl with the sun in her eyes And she’s gone

1776dc Opening 23150
1776dc Opening 23150 (View on Flickr.com)
I had a flashback while starting this post, to the first day of my third year of medical school – the first day (in those days) that medical students spend time in the hospital helping to care for patients. My first rotation was trauma surgery – yes, trauma surgery – and at evening sign out, 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. That moment conveyed important messages to me – that this was going to be brutal, and she was going to shield us, which she did. I would only later ask the question, “from what?”

I couldn’t ask the question (“shield us from what?”) then because I was struggling with too many things. Everything from wanting to be a family doctor in a training environment that didn’t want me to become one, to not being a heterosexual in an environment that demanded that I be or else, to seeing so much death and dying all around me. Much of the death and dying was occurring in the souls of the nurses and doctors in that hospital (University of Arizona Health Sciences Center, but pick your academic medical center…). 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. It went from being shielded by others to shielding yourself.

Again, from what?


I met Jess Jacobs at a code-a-thon (remember those?) in 2011, hosted by then newly-minted HHS Chief Technology Officer Todd Park.

At a very public part of the event toward the end, it happened – she briefly lost consciousness and collapsed. That was the beginning of a complex relationship (for me/us) that tested Jess, the people around her, the health system that ultimately failed her and the body she inhabited.

It turned out she had a rare autonomic dysfunction disorder that affected the way her body regulated itself. These types of conditions are the ferarris that crash into the wall of the health system – they allow a person to be somewhat functional, however when you try to fix them, the complication creates another complication. I’ll talk more about the health system below.

Health 2.0 Code-a-thon 25
Health 2.0 Code-a-thon 25 (View on Flickr.com)
Walking the line

Jess and I were friends. I am also a doctor, but I wasn’t her doctor. I also met her at a time when I was shedding the world I came from, the “not my problem” culture. Washington, DC, in comparison to where I came from (Seattle), is 100 times more conducive to engaging in the world around you, because you don’t have a choice. I’m thankful for that and I’m thankful for the opportunity Jess gave me to engage, to support her, while at the same time practicing different levels of guard rails in this post-not-my-problem world. It’s a good kind of medicine to practice – try it.

I knew Jess in the pre-diagnosis stage, when it seemed that she was less concerned about the situation than the people around her. What is a person supposed to do, though, when they are just starting their professional career in a place like Washington, DC with so much opportunity around them? I personally tried a few different approaches, including a tough love one, but very gently. Again, walking the line.

A few walks in her shoes

Eventually Jess was “diagnosed” and launched into an ever-escalating series of interventions.

During this time, I visited her in a few different hospitals, where I got to walk in her shoes. What I mean by that is what I know from working to be an ally in other contexts – when you associate yourself with the person/people you’re supporting, you receive all (or a portion) of what’s directed at them. It’s kind of amazing.

GW Hospital Visit | 2013-11-16 14-00-43
GW Hospital Visit | 2013-11-16 14-00-43 – In the middle of getting yelled at I at least learned that hospitals are adopting less harmful IV bags (PVC and DEHP-free) (View on Flickr.com)
So, during these visits, I would get treated like she would be treated. There was the time we ventured to Starbucks when she was an inpatient and received the merciless stares of the house staff enjoying their iced blendeds. That and the security guard yelling at us for leaving the floor. Not to mention that when I entered the ward to see her, virtually every door had a big sign on it that said “FALL RISK” which meant that none of the patients was allowed to get up and move around. Also/however, I saw some genuine kindness, like the time the hot breakfast cart came around. It seemed that the lower down a person was in the hierarchy, the kinder they were.

Something I had that Jess didn’t was my secret escape hatch that I could summon at any time. I was a member of the health care hierarchy, in plain clothes, and if I so wished, could claim my identity. I was also able to walk out of the hospital, two pieces of security that I had that Jess didn’t. My 1-2 hours of experiencing “not my problem” health care was 24/7 for her.

I missed a lot more conflict that took place in her hospitalizations that I heard about and left me incredulous. It’s also important to note that Jess missed a lot of living. As I collated the photos that I have of her, I noticed all the events she was not at. I remember walking through DC’s Zoo lights with her. She wanted everything a young woman should want – a career, a family, a special person to love and love her back. She didn’t want to be a patient.

Zoolights 2013 34474
Zoolights 2013 34474 (View on Flickr.com)
One of many things she did for the world was to be completely transparent about everything in her care. She took pictures. She named names. I actually think the institutions she engaged with had no idea how much damage she inflicted on them, simply by telling the truth. I bet they still have no idea. Jess was not easily vanquished by the system. She had a lot more power than people realized and she used it.

medical waste
medical waste (View on Flickr.com)
The limits of Let Patients Help and Dr. Google 

Some people may not appreciate what I’m about to say, here goes anyway.

The thing about health care and doctors especially, is that we have a secret language. I’m not talking about latin or medical terminology, I’m talking about the way we approach things, the intonation, and the specific choices of words we use to get each other to do things that only come from 7+ years of medical training. Mostly, these cultural norms protect our patients, by getting the right things done faster, and getting the wrong things done slower or not at all.

There were several times when I did intervene on Jess’ behalf (with her explicit consent, with her present) by using the secret language to get things done. Once it was to get a physician’s office to see her when she needed to be seen and they didn’t want to see her (it wasn’t their problem, after all, it was hers). Another time it was to get her then primary care physician to actually be a primary care physician (it was one of those new boutique “everyone loves this practice” practices, whose name starts with a number). The thing about using the secret language is that people pretty much have to either do what’s being asked or flee the scene – there’s nowhere to run and nowhere to hide – we in the profession know all the coded ways doctors try and get out of doing things. In both cases, they tried hard to get out of doing things. Really hard.

Follow her down to a bridge by a fountain
Where rocking horse people eat marshmallow pies
Everyone smiles as you drift past the flowers
That grow so incredibly high

Being facile with Google, having open data, and APIs galore can’t save people who at critical times need a good doctor. Not friends who are doctors, your own doctor who prioritizes your health and does what needs to be done, as well as undoing what should never have been done. That was always a problem in Jess’ situation. Despite the good intentions of the let patients help community, patients can’t play doctors. There’s a combination of not having the experience, the judgement, or the objectivity that a dedicated professional has which can result in a bad outcome. That’s why these professionals exist. I’m not saying medical professionals should be worshipped or never questioned. They do have a purpose though, and they (the doctors) cost society a lot of money to create. We should be made to deliver the value on the debt we owe society for allowing us to be who we are. But then, are patients are strong enough to make this ask? Based on being an hour in the hospital with Jess, post-getting-yelled-at, post-merciless gaze from the people in the white coats, I’m not sure, and it’s not fair.

I guess then, it’s “let patients help” and “make doctors help.” Or actually, it’s “create doctors that help.” There’s a concept in medical education known as the “hidden curriculum.” My story above is an example – if we were taught to be there for patients in the classroom over 2 years, all of that was undone in 30 seconds over a plate of unhealthy hospital cafeteria food. The person who undid it also had their training undone similarly. For me, the undoing that happened was later undone, thankfully, in the choice of family medicine as a specialty, the choice to live in my identity, to be in Washington, DC, to be trained as a Permanente physician. That’s my version of a reset, there are many other pathways, trust me. Fortunately, we all start with a default of “I want to help.”

2011 Health Innovation Summit 2540
2011 Health Innovation Summit 2540 (View on Flickr.com)
Engagement

I was not as engaged as others in Jess’ care, and I deeply respect the sacrifices they made for her. Jess was an extremely open person. She also had limits to her openness – there are things she wasn’t going to do. As I tell other physicians (which was told to me by a nurse) “remember, patients get to choose if they are going to follow your advice.”

Realizing that it was likely that my engagement was going to do more harm than good, I limited my engagement. So did many of the doctors that she interacted with. The difference is that those doctors were her doctors, paid to work on her behalf. Their training must have been the same as mine because I could tell the acronym “not my problem” was underlying a lot of the behavior.

One thing that puzzled me, which maybe shouldn’t have, was the fact that her employer, a for-profit health insurance company, should have had every interest in limiting the stratospheric medical expenses that Jess’ care incurred. This might have prompted useful questions about accountability and healthy outcome. Isn’t the rationale of health insurance supposed to be “if the patients get sick, you lose money?”

Newspaper taxis appear on the shore
Waiting to take you away
Climb in the back with your head in the clouds
And you’re gone

Being a misfit

The hardest thing to see is a situation where people have stopped advocating for themselves to the point that they accept the treatment they receive as justified/normal. It’s a big part of the LGBTQ existence so I see it a lot. There are many parallels to the patient experience. Jess fought harder and more bravely than any human should ever have to. She also accepted a lot of poor treatment, more than any human should ever have to. She advocated for others to control their own destiny – like the time she celebrated LGBTQ pride with me in her hospital room. She couldn’t control her own destiny, like so many other patients in our health system.

Jess Heart Parade 25620
Celebrating Pride together – Jess’ Heart Parade 25620 (View on Flickr.com)
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.

I’ve seen a lot of complete ridiculousness in health care. I actually continue to see it, and so do a lot of people in the profession. To people who say that the American health care system is the best in the world, let this serve as an example that it can stand a lot of improvement. Some people do something about it, some people don’t. Some people are misfits, some people “fit in.”

I quipped in my facebook post about the time that Matthew Holt told me, “All that training and here you are, taking pictures,” and my stock response to these comments being “you’ll thank me later.” (He said he takes it back, and therefore I officially love him.)

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.

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Google Glass 1776dc 23312 (View on Flickr.com)

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1776dc Opening 23130 (View on Flickr.com)

When I was debating whether or not to send this note, Ted Eytan wrote a piece which highlights the fact that while it’s great for providers and patients to use email to correspond, it’s far better to communicate. It’s my wish that sharing these messages communicates that, no matter how rare you are, you are not alone. There is always hope.

PS – Ted, Before I die, I want to live.

-Jess Jacobs jessjacobs – On Being Rare

I like taking pictures. These are all the ones I could find that include life with Jess. Feel free to use any or all of them.

60 thoughts on “Remembering Jess Jacobs”

    1. There is so much to be improved in our healthcare system. We must all stand up and be the voice. I was just told about Jess today after someone read my story and asked to interview me. I got online to read Jess’s story, With tears in my eyes, I can’t tell you how it mimics the lives of so many of us with POTS. Our stories are so similar in many ways. Her group of friends that stuck by her side in DC gave her the ability to live. Managing the health care system while being chronically ill is challenging but we truly do become amazing advocates for ourselves. I can’t imagine the amount of joy you all brought her. It’s maddening to me when people think we have the best healthcare. There are so many flaws. My primary care doctor is 6 hours away from me because the local clinics either were not accepting my insurance (Medicare and Medicaid – due to disability from POTS) or I was to medically complex they didn’t feel comfortable treating me, or they didn’t feel comfortable following the recommendation of the specialist (which was a Rx for 1000ml bolus of Saline 3 times a week to be administered via my port but it was an out of state Rx so the pharmacy wouldn’t fill it).
      I could go on for days. Im feeling inspired by this woman I will never get to meet, I was asked to do an interview on healthcare. The world works in mysterious ways. – Thank you for an amazing post. You will change the world being a doctor.

      1. Kate,

        Thank you, and of course you’re welcome. I just posted about another person, Christopher Breene, who also shared his story last night at the DC Tech Meetup. Inspiration happens both ways, and for a generation of physicians and nurses who came to health care to change everything, our patients provide the best fuel for the future. With gratitude,

        Ted

  1. I never met Jess, but I was really impacted by her post about not wasting her time.

    http://jessjacobs.me/on-wasting-my-time-the-numbers/

    I meant to blog about it on my site, but I never did. Hearing of her passing makes me regret not having done that.

    I’ll do that this week and will, sadly, provide links to posts about her passing.

    Here’s the misfits… the ones that give us hope that we can actually reduce the ridiculousness in healthcare.

    My deepest condolences to her friends and family.

    1. Mark,

      Whenever you blog it will be the right time. No regrets. Thanks for all you’ve done to make patient time more valuable in health care – somewhere I’m sure some of Jess’ time was saved because of your work,

      Ted

    1. Greg,

      It’s tough for me to say what that is – more than a few late night conversations were had with lots of people trying to create the legacy before it was a legacy. I think the Ferrari metaphor (or SpaceX rocket) metaphor has meaning. What’s the best way to keep it from slamming into a wall – slow it down? cushion it better? create a better driver? build a different car? Take out the engine? Everyone in this community has a different superpower at all levels of society. I hope they will use them for good, because we’re all unique and we need each other,

      Ted

  2. The sadness of caring for what is incurable. They don’t yet have a subject in med school on “empathy “. We as doctors and healthcare systems worldwide, need to approach medicine and the people we encounter, as more than just problems which we can or cannot fix. Her spirit lives on.

    1. Sharon,

      So well said, thank you. I know some medical schools are investing in design leadership and design thinking which has at its core empathy. I participated in a 6 month project last year as part of the health system I worked in that was focused on empathy for the health and life experience of transgender people. As I said during the experience, there was never a time in my career where I sat in another human being’s home and listened to their story, for 3 hours. It’s an amazing capability that we can equip our health professionals with – I wish it upon everyone,

      Ted

      1. So I shave EDS and possible POTS and MAST CELL. It is scary to see s fellow young zebra like me, pass away. Will there be an official release of her primary cause of death, I wonder? We need to learn from her life, and sadly, her death.

        1. Amanda,

          I am not in contact with Jess’ family so I don’t know what their plans are to share the medical information related to her death. At the same time, I think any experienced physician can review her twitterfeed and blog posts and piece together what happened. I’d suggest you ask your physician to do this with you.

          Also, several people who have commented on this post also identify as having POTS, some have written about their experiences, which to my eyes have similarities and differences to Jess’. I’d get in touch (and/or I’m happy to connect you), as I’m sure there’s a lot to learn there. All the best and thanks for stopping by,

          Ted

  3. […] Other friends of Jess Jacobs have been sharing stories about her. You will find posts getting published this week and beyond because Jess’s reach was substantial. Here’s one beautiful example from Dr. Ted Eytan — with a glorious Flickr photo gallery — Remembering Jess Jacobs. […]

  4. […] defacto indictment of our predominantly silo-ed sick care system is offered by Ted Eytan, MD ‘Remembering Jess Jacobs‘, and today via Neil Versel ‘Jess Jacobs, upbeat empowered patient and Aetna innovator, […]

  5. This was brilliant. You articulated my own poorly-formed thoughts. I wasn’t lucky enough to know Jess personally but have been inspired by her. I mentioned you in my own post on the subject.

    (Edited to prevent URL from being linkified, the below should work)

    http://teyt.in/2b0gUvi

    1. Jessica,

      And you articulated thoughts that I don’t have about having POTS/EDS because I will never ever know what it’s like to have it/them, which is freeing because it creates curiosity. It’s the best thing anyone has ever said to me to create empathy. Thanks for being transparent about your experience – it will help many, it helped me. I tweeted your post just now. Thanks for taking the time to write,

      Ted

  6. Every day I think these thoughts, but you’ve written them down with an eloquence that eludes me. Thank you, Ted!

    1. Craig,

      Thanks for sharing that you have them – I feel many of the actors in this journey had them, too. Before they die, I hope we can help them live 🙂 – Ted

  7. I never knew Jess, but I feel like I’ve lost a sister in the trenches, except I’m cowering with my arms over my head. I have EDS and POTS as well and encounter the same hospital horrors and live in fear of not anonymously complaining. I’ve heard patients targeted during stays for being needy. I’m so sorry to all who loved Jess and selfishly for myself bc of her amazing advocacy for other patients. I’ve lost my words and the world has suffered a loss. I only hope, whatever her beliefs were, that now pain is gone

    1. Tk,

      Thanks for writing. I am sorry for your loss in her passing. I think Jess would be happy to know that the things she did allow you to prioritize yourself in your own care. I like to remind people that patients aren’t needy, their illnesses are, and therefore it’s a privilege to work together with a patient to address the need to enjoy a long, happy life. It’s what we all have in common as humans. Here’s to making sure that’s the norm. All the best,

      Ted

  8. This is a beautiful tribute. I’m writing an article for athenaInsight.com about her — is it alright to use some of these pictures? I saw you said okay for people to use them, but just want to double check it’s okay for a website publication.

    1. Chelsea, all of the pictures are Creative Commons licensed for you to use. If you link back to the original photo on Flickr that would be great, so others could use them. Thanks for the kind words and for supporting Jess’ work,

      Ted

  9. Ted, in the flurry of travel during and after Jess’s death, I saw the lead photo of this post many times but have only gotten to read this now. It’s masterful.

    I hope when you said some might not appreciate the comments about the limits of Let Patients Help (my book title), you weren’t worried that I’d be offended. Of course I’m not <3 … the phrase in no way suggests "who needs doctors?" I haven't stopped going to mine; to the contrary I'm seeing more, now, from time to time. I sure as (@#* needed docs when I was dying, and I need docs now when I have a simple butt pain.

    To the contrary, the point of that book and companion TED talk was to ask clinicians and policy people to listen better, to end the too-common part of their culture that says patients are a problem to be coped with and to be shut up. The three days of her roommate's bloody vomit Jess witnessed at GWU is just one nasty symptom of that culture (as the life goes out of those employees, too, as you say).

    Patients certainly do need doctors who share a parent's or loved one's sense of urgency about saving that life and of giving care. No amount of googling will ever replace that skill … and no amount of financial management will substitute for the need for care and carING.

    I’m so moved (but not surprised) that you spent so much time writing this and especially curating all those photos. You are, as always, generosity.

    1. Dave,

      As usual I spent quite a bit of time reflecting on your comment. It’s so kind and supportive, and reminds me…..

      If you recall, we met for the very first time in November, 2008 and even though I didn’t acknowledge it in my post about our meeting, you comforted me after I learned that the voters of California denied LGBTQ people the dignity of living well in society. It was a punishing moment. That moment has passed and has since erased from our history ( <3 always wins ) and the experience lingers. Patients help doctors, and doctors need patients, too. These relationships can be far more complex and beautiful than some people realize.

      I was also affected by the last sentence of your comment for a few reasons. I thought about the many greater magnitudes of generosity of Jess’ network compared to mine. I thought about the fact that there are things that need to be done and we’re here to do them. I thought about the signals I get from time to time within the medical profession (some direct, some indirect, some coded, some unencrypted) that are the opposite of yours. The flip side of NMP is sometimes “why are you making it your problem.” So for all those reasons, I appreciate it and I appreciate you,

      Ted

      1. I well remember that morning outside, I think, a yogurt shop. Funny, though, that I don’t recall it as a first meeting – I knew you so well through social media.

        I’m increasingly confident that there will be (or is) a special section of hell for the US healthcare money managers who create pressures that turn motivated carers into demon-driven “no I won’t” non-carers. There may also be inhabitants of that section who on earth dwell elsewhere, but I’ve seen too often since you and I first met how those forces play out (even at KP), and it clearly creates suffering, both among the un-cared-for patients and the clinicians whose souls get torn.

        In the UK there’s a lot of talk about burnout among extremely dedicated HCPs who’ve been driven to the edge and beyond. I’ve heard stories of unspeakable acts of cruelty due to the financial pressures.

        Well, what’s right is right, and I believe that in some eternal sense the only thing we have full control over is how much we choose to love, regardless of circumstances.

        What comes to mind is The Flirtations’ 1990 lullaby “Everything Possible” (a quarter century ago!) which ends thus:

        You can be anybody that you want to be, you can love whomever you will.
        You can travel any country where your heart leads and know I will love you still.
        You can live by yourself, you can gather friends around, you can choose one special one.
        And the only measure of your words and your deeds
        Will be the love you leave behind when you’re gone.

        Amen.

      2. A follow-on thought about what might happen (or not) after a blogger deletes comments from a possibly hateful segment:

        There have been so many cases of people being “revenge swarmed” (a made up term) for taking a stand – I wonder what triggers that versus when it doesn’t happen. Wondering if it would happen in this case if more attention were drawn to this.

        Having said that, I too have done similar “censoring” edits for exactly the same reasons, without consequence.

        My gut says that indeed, when something gets shut down, flamers go elsewhere. Back on CompuServe in the 90s sometimes they’d then try to recruit others into attacking the host (“sysop”), but without a megaphone, it gets nowhere.

        Meanwhile today on NPR I heard about NextDoor, a new kind of social media app (for individual local neighborhoods) that has decided to ban comments about sightings of sketchy-looking neighborhood events that focus on someone’s race etc. That NPR segment is here.

        We live in … interesting times. May all publishers think newly about what is and isn’t okay (or, more to the point, required of them.)

  10. Ted,

    My deepest condolences to you on the loss of your dear friend. I hear your truths, struggles and grief in your writing. I thank you for your sincerity, honesty, and your strength to write this post in such a fragile time. Your writing has reached deep into my heart and has given me insight and courage to help raise my voice with yours. Thank you, Ted…. Thank you. I will carry your words with me and think of you and Jess as we continue to walk our path of change. I send you thoughts of healing, comfort and peace.

    With Sympathy,

    Megan

  11. Your comment about our first meeting led me to revisit that post, which was 6 months after we’d first met online, 7 months after I’d discovered the word e-patient. Wow.

    And when I chased the link to my first comment on one of your posts, back then, here’s what you said in that post What does giving patients access to their health records have to do with safety? (Eight. Years. Ago.)

    Whenever I walk into one of my organization’s medical centers, I assume that I am 100% accountable for everything that is happening there. As I walk by the pharmacy, the lab, and head up to primary care, I imagine that my role is to protect every patient receiving care in all of those areas, whether or not I am directly involved in providing that care.

    Now, imagine that every physician, staff member, patient, patient’s family, community member, carried themselves that way in every hospital and medical center. What would health care be like?

    This cannot happen unless we support the idea that everyone on the care team, patient included, deserves access to all of the information about their care.

    That vision of “total care” remains, but your post suggests it’s not always going so well.

    But the vision remains, and must. Bless you for your integrity – and I don’t mean that necessarily in the moral sense, but for authentically being who you really are. That’s what creates the space for others (including me) to strive to be who I am.

  12. So sorry for you and the world for the loss of Jess. She sounds like a bright soul. I look forward to seeing her legacy lived out in health systems improvements in our city and beyond (let’s talk if I can help improve my system with the information she documented!)

    1. Aubrey,

      Thank you. I am sure there are people who would be willing to take you up on your offer if you would like me to put it out there. I can do it over Twitter or email whatever you prefer,

      Ted

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