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
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.
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.
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.
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.
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.”
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.
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.
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.