Let's work on the hard stuff

Last week, I got an email from a friend about a new startup that “hand-picks a box of snacks and sends it to your home,” started by a group of entrepreneurs who “wanted a better way to snack.”

Several days after I read about this startup, I was watching my seven-month-old play on rug next to me, when I felt my chest tighten in a new and frightening way. I ignored the pain for several minutes while hoping with every fiber of my being that I wasn’t experiencing symptoms of cardiac arrest.

At 29, I knew the chances of me having a heart attack were very slim. And yet, I was experiencing chest tightness, trouble breathing, and discomfort on my right side. Every medical show I’d ever watched, combined with what I’d learned from years of reading the news told me cardiac arrest was America’s biggest killer, and that it happened quickly. So, I did the thing I very much didn’t want to do. I Googled my symptoms with a growing sense of panic.

Everyone knows that you shouldn’t use Google as a doctor, particularly given the kind of tracking that advertisers do on you afterwards. A search engine is not at all accurate for medical diagnosis, but going anywhere these days without having at least some idea of what you might have means you’re flying blind.

I’ll usually read the top five or six results, combined with some forums where people say they had symptom x or y, and then decide what to do next. Dr. Google said it could be a heart attack, or, more likely, angina, which is not as serious, but could be a precursor to a heart attack. Either way, I needed to seek immediate medical treatment.

My doctor’s office was immediately not an option. It was 4 PM on a Friday before Labor Day weekend. There was no chance I would catch anyone, much less get an appointment that day. The only other option was the emergency room. On the one hand, I dreaded the thought of going to the ER for hours on end, waiting in some bleak hospital room away from my daughter while my mom put her to bed alone. But,on the other hand, I was struck with a white-hot panic at not going to get care and having something happen to me while my baby was so little. Both options seemed scary and unfair and too overwhelming to think about.

I looked up urgent care clinics. A bunch of these have recently opened in the Philadelphia suburbs, and I’ve successfully gone in for issues like severe colds. These clinics are amazing because they have all the basic services a doctor’s office offers, but they’re open late, and I don’t need to wait days to make an appointment.

I thought I could just go to one of these centers. I wouldn’t need to wait as long as I would in an emergency room, and it might cost less. I very thankfully have very good insurance through my husband, but I was still not looking forward to the bill. The last time I was in the emergency room, about ten years ago, the bill came to $500 for a simple check by a doctor (no bloodwork, EKG, or X-rays.)

Unfortunately, the websites of most of these centers say that if you’re having chest pain, you should call 911. But 911 meant calling an ambulance, which meant even more money and time spent, not to mention the social stigma of having an ambulance come to my house when I wasn’t even completely sure if I had anything serious. So my husband and I left the baby with my mom and went to the ER.

The ER we went to is at our local hospital, the hospital where I had my baby. But as we walked into the ER, the scene was a night and day difference from Labor and Delivery. No shiny lobbies or happy pictures of storks. One of the walls was zigzagged with pockmarks, the paint peeling to expose the cork underneath. The hallway was taped off at random intervals with painter’s tape. There were long, black scuff marks everywhere. Gummy bears and cracker crumbs littered the carpet. The lighting was dim. About twenty people sat miserably in the gloom, waiting.

The intake process was, fortunately, relatively quick. Once I described my symptoms to the intake nurse, she wrote “CP” next to my name - chest pain. After about 10 minutes waiting to be taken back (a time interval which, if I were having really severe chest pain, might have been too late,) I was called back. The tech handling me asked me for my symptoms and then did an EKG. Then she brought in a wheelchair (which seemed unnecessary given that I could fully walk,) and wheeled me perhaps 500 feet to the nurse, who asked me the same things again. Neither seemed concerned that I could be having a heart attack or the precursor to one, although I couldn’t get any concrete answers. They told me to get back in the wheelchair. Then they wheeled me out to the waiting room, where I got up and walked out of the wheelchair and sat down in a regular waiting room chair.

This was extremely strange and embarrassing, but I’m guessing it was for malpractice purposes.

Then, my husband and I waited. We were not told what the next step would be, or how long it would take. We waited for about forty minutes. During that time, a patient who really did need a wheelchair was wheeled out of the ER. The man that accompanied her had a severe limp, and he struggled for ten minutes to put her feet in the wheelchair pedals and push her forward. No one from the ER assisted, until a man in the waiting room stood up and tried to help him move the wheelchair. This resulted in both the man with the severe limp and the woman in the wheelchair falling over, at which point staff rushed in to intervene.

Next to us,a woman sat waiting with two small children. The first, a girl, was about one and a half and the other, a boy, was maybe five or six. The woman talked wearily to another woman who was with her, possibly her sister. The six year sat listlessly looking at the plaster, obviously sick. The baby kept walking around the emergency room, restless, while her mom chased her down, away from the dingy walls and emergency room door and kept offering her snacks to distract her. The baby then started crying. The woman hoisted her onto her lap and fumbled with a breastfeeding cover while twenty people looked on. There was nothing to entertain the children, and nowhere for the woman to feed the baby or leave her while she was with her brother. “Give me the cell phone,” the woman said to her sister, and was fumbling to find a show to watch on YouTube to distract then when they were all called in.

After they left, a man holding a bandaged arm that appeared to still be bleeding sat in their spot, wincing quietly, visibly in pain.

I watched all of this as the tightness in my chest got tighter, and I thought about all of these people and whether they would be alright, and whether I would be alright.

The peeling walls, the quiet anguish, the complete lack of transparency about when each person’s very urgent problem would be addressed – all of it adde to the air of quiet desperation in the waiting room.

Finally, we were called back. The man who appeared to have a serious arm injury and who possibly should have been treated at the same time as me, was still waiting when I went back. We were taken through a labyrinth of hallways to a small hospital room where I changed out of my street clothes. Then, the testing began. The process for having blood taken, getting X-rays, and waiting for a doctor to check me lasted over three and a half hours. Throughout this process no one told me what would happen next or what was going on with me, or what they would do next, until I started asking asked them pointed questions, to the point where they got annoyed.

The thing about American hospitals (and my husband I have been to least five or six in the Philadelphia area by this point, ranging from small local clinics to nationally-recognized university hospitals), is that no one cares about what is going on with you except you, and that you have to be annoying if you want anything done.

The American hospital is an ecosystem that works to maximize efficiency, not effectiveness. Things will happen at some point, just not when you need them to. There are a million things in play in the system that create pressure on the people working in it, and you are just one of them. Doctors often get fifteen minutes or less per patient, often seeing more than 20 people per day. On top of that, there are nursing schedules, federal regulations, state regulations, local regulations, hospital IT systems that don’t talk to each other, medical professionals who don’t work at the hospital but come in on a regular basis, supplies that need to constantly be replaces, machines that break, and the hospital CEO, constantly worrying about clearing margins. You are just a single data point, and if you want good care, you have to be good at hospitals.

My husband and I have, unfortunately, become very good at hospitals in the course of caring for many sick and dying relatives. The trick is to annoy people. Paging nurses, getting doctors’ phone numbers, hanging around nurses’ desks, these are the ways you get in people’s faces if your questions are not being answered. The more people you annoy, the more quickly your issue gets resolved, and the more people associate you with other caregivers. There is usually a whole team of people looking at a single patient, and the second trick is to make sure they all know about each other. I am convinced if my husband had not been tracking down our nurse and doctor every half hour or so and asking them if they could take a look at whatever was happening, I would have been at the ER for much longer. I also made sure to ask every person who came into my room what they were doing, remind them of my symptoms, and ask who I would see next. Oftentimes, the answer was an annoyed shrug.

The amount of patient-doctor disconnect and lack of transparency in hospitals is astounding. When an elderly relative of mine was in the hospital prior to a triple bypass, the amount of information my family was not receiving simply by not being in the hospital room 24-7 while nurses and doctors and physical therapists came in and out was so severe that we considered hiring a patient advocate, aka someone to just sit in his hospital room 6-8 hours a day and funnel information and bother people.

About two hours into my own hospital visit, no one still knew anything about what was happening to me, except that it probably was not a heart attack, although no one told me definitely that it was ruled out.

I was still anxious, but now I was hooked up to a monitor and wearing a hospital gown, so I couldn’t even pace the room.

Somewhere during that endless time between tests and caregivers, my husband floated the theory that I could be having chest pain due to sore muscles from constantly lifting and carrying my daughter (a large baby). This seemed ridiculous to me. Did people really get such injuries? I had been carrying my daughter for over seven months. Why was this just happening now? “She’s gotten much bigger,” he said simply.

We searched Google and lo and behold, these were all the same symptoms I was experiencing. This is the link that made me stop thinking I had a heart attack. My panic ebbed away and slowly a sense of cautious relief began to overtake me.

Half an hour later, a doctor finally came by (up to this point I had been with nurses and physician’s assistants, although I had been assured that “a doctor looked at your EKG”), and he said there was nothing wrong. “What is it,” I asked, and the doctor frowned.

“Could it be a pulled muscle?” I asked. “Sure,” he nodded his head vigorously. “It sure could.” Up to that point, no one had said a single thing about how it could be a pulled chest muscle except for my husband, who is not even remotely trained in medicine.

Finally, after waiting another half an hour, I was signed out. We left the ER four hours after we arrived, with no prescription or treatment other than a suggestion to “take some ibuprofen.” This, I had already done before I left for the hospital, because I had remembered that Bayer can reduce the severity of heart attacks.

The nurse handed us a neatly-printed bill for our co-pay, and a billing clerk who was so exhausted from her long shift she was almost falling asleep at her desk swiped our card for our $200 deductible. Then, we paid for the privilege of parking at the hospital garage for several hours, and raced home to our baby.

I am not describing my experience to complain about first world problems, or to blame my specific hospital, which I still love and respect for the delivery experience I had there. Most people in the medical profession are doing what they can within the constraints of this massive, terrible monster of a system that we’ve created.

They are all just as exhausted as us - even more so because they work many more unreasonable hours within the mentally taxing confines of a hospital environment - and on top of working those many, many hours they have to deal with patients who are frazzled and terrified and sometimes, like me, just plain annoying. Nurses especially have the hardest job out of anyone I know.

I am simply describing my experience to offer one anecdote of how overwhelming and stressful the American healthcare system can be like for someone like me, a person who is young and without any serious medical problems, who speaks English, who has a job so I’m not worried about paying $200 right away, who has health insurance, who reads up on her own symptoms and serves as a self-advocate, and who has someone to watch her children while she’s going to medical appointments.

If you aren’t lucky to have some of these priviledges, the ER experience quickly goes from just scary and annoying to terrifying and traumatizing.

These are all the things I was thinking about as I remembered the snack startup email. Why is it that we are so focused on “fixing the way we snack?” (or the way we get fresh flowers delivered, or the way we do laundry?) Why can’t we instead pool our energy and resources and instead of building monthly subscription boxes, social media apps, optimizing ad networks, tackle the health monster? What would it take to begin fixing at least a little bit of this broken, ugly thing?

Well, for starters, it takes lots and lots of money, much more than most entrepreneurs are willing to expend.

Healthcare is an industry of established giants: hospital systems, regulators, insurers, and drugmakers. There’s no way to go around these big guys — every entrepreneur needs to work with them.

Fixing a living, breathing, broken system is insanely hard. There are numerous other issues that mean you need not only brains, but energy. Sadly, if you are a team of four or five and have finite resources, you cannot just work around the entire American healthcare system to make an app that makes everyone’s experience easier.

But, even more urgently, there are over 130 million visits to emergency rooms every year. Even assuming that half of those are repeat visitors ( a pretty liberal assumption,) 20% of the United States is in emergency rooms in any given year. And only 27% of visits result in being seen (for any definition of the word seen, I guess) in 15 minutes or less. And both visitors and wait times [are growing.] (http://newsroom.acep.org/2015-05-04-ER-Visits-Continue-to-Rise-Since-Implementation-of-Affordable-Care-Act)

Receiving urgent care is an important issue, far more important than the ability to receive makeup or cookies at your house, for more important than what the majority of entrepreneurs with resources at their disposal choose to work on. But whether we choose to or not, this is an issue that will, unfortunately, probably impact someone at least a degree or two away from you. So maybe the answer is not a single startup, but a company that pools startup resources and combines brainpower to start picking away at systemic inefficiencies. And there are plenty of them. There are whole books dedicated to learning to navigate the American medical system, learning how to be “good at hospitals.”

Fixing these big problems requires not working on a startup that figures out how to monetize click-bait. As the Forbes article notes, “There’s a lot of big brains working on small problems.”

Where is the startup that minimizes the amount of time people spend in the waiting room? Where is the startup that creates an app where you can check into an emergency room ahead of time? Where is the startup that makes sure the patient has a ticket number and knows how much time is left before they see a doctor, where the medical history of the patient is available at once to every point in a hospital? Where is the startup that makes ER waiting rooms less terrifying places for small children?

Where is the corporate equivalent of the conscientiousness and empathy of Atul Gawande?

Where is startup that fixes the patient user experience?

I am hoping that I am just uneducated about the space, but for all the tech press I read, I never hear about these companies. I only hear about Snapchat’s $15 billion valuation.

But what’s more important? The ability to send ephemeral memes? Or making sure we are not on the edge of a physical and psychological cliff every time we feel something wrong with our bodies? I guess the market decides that, and, sadly, it’s currently deciding against us.