By JESS JACOBS

This has been a very sad weekend for me personally, the wider health care community and for anyone who knew Jess Jacobs, who died on Saturday. She was only 29 years old, and was smart, funny, enthusiastic, and brave well beyond her years. She suffered from two very rare diseases, but was also working to push health policy forward at ONC, FDA and Aetna, and she really knew her stuff. Jess was a marvel and a rarity in more ways than one. She was #UnicornJess. (That link will take you to the twitter memorial on Sunday night, but also check out remembrances from Ted Eytan & Carly Medosch). I’m ashamed that I never thought to offer this to her while it was happening, but now I’m going to run several of her pieces from her site about her “care” experience on THCB in the coming days, starting with this one from 2015. (Hospital X is I believe Georgetown Univ Med Center but she went through every hospital in DC and there were no good ones. She wouldn’t name them beause she expected to be back, but that’s not an issue now). And while my thoughts are with Jess family and friends, I’m going to redouble my efforts to change what passes for care in today’s system–Matthew Holt

I’ve now spent two consecutive Memorial Day weekends at Hospital X with intractable vomiting. Last year I checked myself in. This year, I took the scenic route via three weeks of hard time at Hospital A followed by a transfer to Hospital X. When the nurse blindsided me with the transfer order to Hospital X after COB on a Friday night, I assumed it was a clerical error. The plan that’d been laid out by my primary hospitalist team was to transfer me to a hospital which specializes in CVS. When my (new) weekend hospitalist had run by for +/- 90 seconds Friday morning, he’d said I’d be transferred Monday as planned.

But here I was, 8 hours later, hysterically crying over the prospect of being sent back to the hell which is  Hospital X. I finally got nursing to call the hospitalist so I could plead with him to change the order. I let him know that Hospital X’s ‘care’ is better characterized as psychological and physical torture. I firmly believe I am better off facedown in a ditch, drowning in an inch of muddy water, than under the care of Hospital X. The hospitalist attempted to contain his exasperation while insisting that ditches are a far worse fate than Hospital X and I am lucky he had managed to secure a transfer to a new cyclic vomiting specialist there. I’ve now been admitted for 8 days at Hospital X and haven’t seen anyone from the GI department, let alone a CVS specialist. I have, however, been told by hospital police that they would cuff me and take me to jail for taking photos of them ransacking my belongings following a syncopal episode. This egregious treatment doesn’t surprise me – indeed, last month I wrote Hospital X a letter of complaint, copied below, which shared  how their lack humanity has broken my spirit.

Dear Dr. X-

Thank you for your willingness to contact me, the patient in question, regarding my experience with Hospital X. Apologies for the lapse in time, your email disappeared to the bottom of my inbox whenI was readmitted to Hospital A with a central line infection. My choice to return to the facility which gave me the infection, instead of coming to Hospital X, is a good indication of the disdain with which I hold your hospital with.

When Dr. Y visited me during a two-week stay in July, I thought Hospital X had hit rock bottom. During this stay my roommate’s bloody vomit sat clogged in the sink for three days before someone came to plunge it. Sanitary conditions pale in comparison to the forced separation from my friend and advocate who is a Medical Student with your facility. While I fully understand the need to keep relationships between students and patients professional to protect patient privacy/health and their education… Over the years my friend has come to know my health likely better than I do… and long ago I legally gave them permission to access my medical information [so any professional/educational distance is null].

However, that isn’t the stay which brings me to tears when I answer people asking ‘What is the worst healthcare experience of your life?’ – that honor belongs to the 48 hours I spent housed in an on-call room last November.

November’s stay made me appreciate my cellphone in ways that you should not have to appreciate your phone while inpatient at a hospital. Here my phone wasn’t my connection to the outside world – it was how I connected the dots within. It enabled me to contact five of my physicians, all of whom are attending physicians at your institution, when my resident was unable to do so. When the resident insinuated I had not established care with hematology, I was able to call the hematology department and connect my hematologist to the resident in under 15 minutes. At the time of admission, I had given this resident a typed list of my specialists which included the same contact information I used successfully; as such I find it difficult to believe the resident attempted to verify I was an existing patient.

When the nurses couldn’t hear the physical bells my roommate and I were given, I resorted to calling the nursing station on my cellphone (Ironically, courtesy of the speaker in the wall of our on-call room, we heard nurse requests from all the other patients on the floor). My roommate did not have a cellphone and I ended up relaying her requests by calling the nurses station each time my roommate rang her physical bell. As such, I didn’t sleep the entire time we were in this closet.

However, these communications issues are simply annoyances in comparison to the emotional torture of a fellow human experiencing unrelenting pain.

My roommate, admitted for a Sickle Cell crisis, cried hysterically for over 12 hours while her pain remained unmanaged. During this time I called and emailed the patient advocate several times on my roommate’s behalf and ‘rang’ the nurse countless times.  Eventually my roommate’s attending came to see her. Unfortunately her physician was “Dr. Feelgood.” I had the misfortune of being this physician’s patient in July. I nicknamed him “Dr. Feelgood” for stopping my pain regimen (developed by a pain specialist) and insisting yoga (contraindicated with my joint condition) would magically fix all my problems. True to form, Dr. Feelgood insisted my roommate’s issues related to positive thinking and refused to revert to a pain regimen that had apparently worked before. I’m not a physician and have no idea what pain medications this girl should have been on. But as a human I know that “Tears = Bad” and anyone that cries for twelve hours while begging someone, anyone, to call their physician of record isn’t faking it. She didn’t stop crying until a doctor with some humanity sedated her following shift change. The complete disregard for her pain stripped her of her dignity and brought me to tears.

I’ve experienced many horrible things during my healthcare journey. I have experienced pain – I broke my femur in a remote location and spent hours in transit before receiving pain medication. I have experienced makeshift environments – last September I spent 27 hours in a hallway waiting for a bed to open while being treated for a pulmonary embolism. But this experience of complete powerlessness in the face of another’s pain is, bar none, the most profoundly heartbreaking experience of my life.

During this situation, I contacted the patient advocate several times via email/phone and complained in person post discharge. While I am appreciative of Dr. Y for bringing these issues to your attention and find your immediate response very encouraging, it saddens me that as a simple patient my voice wasn’t heard.

Wishing you all the best,

Jess Jacobs

Here is their response:

Thanks to my forced transfer to this facility, I’ve found that nothing’s improved. I was slated for discharge earlier today, only to be remanded over dangerously offkilter labs caught when the attending went to signoff on my discharge. These electrolyte imbalances did not become dangerous overnight and might have been treated when I passed out earlier this week. But no. Instead they looked for an illicit cause to my syncope, sending police in to toss my room during my post syncopal phase in which I shake. When the police came in I photographed their aggression. The officers immediately threatened to handcuff me and throw me in jail if I didn’t delete the photos while they watched. Obviously I acquiesced instead of finding out whether you go to real jail or hospital jail when you get arrested by hospital rent-a-cops.

Either way, the facility is now unwilling to return my central line supplies. This is a bit of a policy change from when I was admitted – the admitting charge nurse had given back my unlabeled pills with the understanding that I wouldn’t take them while admitted. Now I’m being told that, while I have an active prescription from one of their own attendings and can show that I/my insurance paid for these items, the facility will not return the items because my infusion pharmacy didn’t label each saline flush, heparin lock, and zofran vial with my name. Additionally, I must petition to have my medical record amended to strike their incorrect suspicion that I illicitly obtained/administered IV morphine to myself while admitted.

But this was only the beginning of ‘Big Brother.’ Since I’ve now passed out twice, I have the pleasure of a Sitter. A Sitter is someone who sits in your room and watches you, presumably so you don’t attempt to get out of bed on your own and fall. Previous Sitters have let me know they’ve found the task of watching me easy/boring/ridiculous since I know who/where I am and play by the posted ‘Call! Don’t Fall!’ rules. This admission is no different. The two falls I’ve had I called nursing, told them I thought I was about to pass out, and,  fell to the floor despite nursing having their hands on me at the time.

However, I can’t blame the facility for trying to avoid another fall – as previously explained by a friendly CNA: “We’d rather have you die than fall. There’s less paperwork.” But with less paperwork comes unintended consequences for the patient – both physical and emotional. Physically I’m losing muscle mass and stability as my only exercise is the 8 or so feet between my bed and the toilet. Otherwise I’m stuck in an alarmed bed 24/7 which is so sensitive, it goes off if I roll over incorrectly.

Emotionally, well, there’s a loss of dignity that comes with someone watching you pee or, perhaps worse, visit with friends and family. Of course, this isn’t an ever vigilant eye, that would require a living wage or technology implementation. Since we’re on the 1980’s technology/(presumably) minimum wage package, sometimes the Sitter is asleep.  Or visiting loudly with other employees passing in the hall at 4AM. Or singing a little song at 2AM. Or decides to snack on foods that makes you queasy. (Side Note: Mine’s currently sitting 5 feet away eating bacon. She’s also 8 months pregnant so I really hope I don’t fall on her watch. This is a workers comp lawsuit just waiting to happen.)

When I told the charge nurse the Sitter singing/talking/eating at all hours was becoming the last straw, the Sitter took it personally. I tried to reassure her that she wasn’t the only reason I hadn’t slept in days. No, her disregard is just one of many items on the list – 3AM blood draws, 5AM vitals, 7AM physician visits – disrupting the painsomnia and nausea that have become all-encompassing since switching to oral meds. Why is Hospital X so committed to the oral med  ‘attempt/vomit/repeat’ plan? Because the second I can hold something down, they can discharge. Not exactly the holistic care experience advertised on the website.

While I hate to say it, it seems my emotionally-charged-knee-jerk “I would be better off in a ditch than at Hospital X!” prophecy rings true. And, while my brain isn’t quite working (indeed, much of this post was written prior to my semi-forced admission back to Hospital X), eventually it will return and I’ll report Hospital X to the various licensing/quality bodies for the absurdity.

The sad thing is… I know my experience is not unique within the community of patients suffering from chronic disease. Everyday patients are harmed by the one-size fits all approach to medicine which makes no room for those with ill-defined syndromes and default to patient blaming. And these real problems can’t be solved with hospital wide technology updates or private rooms. While there’s a huge focus on prevention and population health (as there should be), we need to be careful we don’t forget the 1% of unicorns who make up 20% of healthcare spending. And, while there’s obviously no easy answer, there is an answer. We (yes, we as in me and you), as the people who’ve fallen in love with Mars Curiosity’s delightful personality, can figure out how to deliver care that’s individually appropriate on Earth. We can. I believe it.

Jess Jacobs, who died Sat Aug 14, 2016, was a former official at ONC & FDA, and was recently working at Aetna