Surviving a Stay at the Hospital

The Modern Survival Guide #113

Photo by Andrea Piacquadio from Pexels

This is the Modern Survival Guide, a guidebook I’m writing for things I think people need to know about living in the modern world. The views expressed here are mine, and mine alone. And one of the things that is increasingly apparent about modern life, especially in this time of COVID-19, is that almost everyone will be a patient in a hospital at some point. It’s kind of unavoidable; you either die young or live long enough to see yourself need advanced medical care.

The good news is, modern hospitals are pretty good. Here’s the thing, though: hospitals, however well they are run, however high-tech they might be, are concentrations of sick people, are run by human beings, and, in the US, are often for-profit institutions. That gives you major risk factors that need to be accounted for if you want to (1) receive good treatment and (2) survive to go home while (3) not going bankrupt.

Now for the kicker: even at the best hospitals, none of these things are guaranteed. #3 is especially not guaranteed at the best hospitals. There is always some degree of risk. There are things you can do to increase your odds of positive results, but let’s not make the mistake of thinking that hospital visits can ever be risk-free.

So today we’re talking about surviving hospitals — not because I think hospitals are bad, because that’s not it at all. Hospitals are fantastic. Modern medicine is fantastic, and full of scientific miracles. I am not here to talk smack about medical personnel or medical institutions. But I would be remiss in writing a modern survival guide without giving you at least some information about how to survive the American hospital system, because it isn’t a walk in the park.

The Basics of Hospital Survival

The first thing to remember about hospitals is that they are collections of sick people. The second thing to remember about hospitals is that they are run by fallible human beings. The third thing to remember about hospitals is that if you’re a patient then the goal is to leave with a better health status. The fourth thing to remember about hospitals is that they are expensive in the US.

If we take these four points together, we can assemble a short list of items that every hospital patient should bear clearly in mind whenever they enter one of our prestigious medical institutions:

• Sanitation is very very important, and some of that is on you.
• Patients require advocates to ensure they receive quality care and survive hospital errors.
• Patients have an obligation to follow treatment instructions.
• Every hospital visit is an exercise in budgeting and prioritization.

None of these is clear-cut; every one of these is important. We’ll cover these in detail for the rest of the article.

Sanitation: Surviving Sick People

As we have all been forcibly reminded during the COVID-19 quarantines, germs and viruses have a tendency to spread. Imagine everything you touch is coated in glitter — if you don’t wash your hands, how far does that glitter travel by the end of the day? Now imagine that glitter is a bacterium, or a virus. That’s the issue that every hospital has to deal with, multiplied several thousand times over. Every day. All the time.

So — when wandering through a hospital, either as a patient or (perhaps even more important) as a visitor, you have an obligation to stay as sanitized as possible. This involves a few things:

• Wash your hands frequently.
• Carry hand sanitizer and use it frequently.
• Restrict your movement to areas where you need to be.
• Wear a face mask if at all possible.

Washing your hands and using hand sanitizer accomplish the same goal — limiting the glitter spread. Bear in mind that every surface you touch, every door handle, every elevator button, every hand you shake — every chance you have to spread the glitter potentially endangers someone’s life in a hospital.

Similarly, every room you enter has air. Every breath contains a puff of microbes that might or might not contain a pathogen. You literally have no way of knowing; the air doesn’t turn purple if you’ve been infected, and you don’t exhale a black cloud if you’re infecting others. You may not even get sick later, but as soon as you take in a drag of flu or COVID or whatever, you immediately become a risk factor for someone else.

That means that you have an obligation to think of someone other than yourself whenever you walk into a hospital, unless you are a massive asshole. What do we say in this series? That’s right, don’t be an asshole.

Don’t go wandering. Wear a face mask if you can. Limit the opportunity for pathogens to infect you or use you as a carrier. The air you breathe could be lethal, or at least damaging, for you and for others. Your touch is a vector for disease. And don’t even get me started about the average person’s sneezing discipline.

I am not being sensational. This is not a joke. This is how things are.

As a hospital patient, all this gets turned up to 11. Now the primary focus turns to protecting yourself. This involves both basic sanitation — it’s a good idea to shower before you come to the hospital, and clean yourself as best you are able while in the hospital — and basic precautions like washing your hands before meals and using hand sanitizer.

It is also extremely important to ask for help. Getting reasonably clean can be a critical component of going home without contracting a hospital-acquired infection. Most of us, if we are sick enough to require hospitalization, are not able to care for ourselves. This is when you need to ask for help from the nursing staff. It is an extremely bad idea to lie around in filth for any amount of time — especially when you are in a hospital. This bring us to our next point…

Patient Advocacy: Because Charts Aren’t Always Enough

While you are in a hospital, your life and the quality thereof is largely dependent on the staff having and following good institutional processes. One of the most critical of these is your patient chart — the record that the hospital staff maintains of your treatment regimen, what has been done, what hasn’t been done, and what they’re supposed to be looking out for. Another is the sanitation discipline of the staff; another is the staffing ratio of nurses to patients, and the ratio of doctors to patients. There are bunches and bunches of these processes and procedures, and you will not be aware of all of them. Any institution is only as good as its internal processes, and hospitals are no exception.

Now for the key point: People make mistakes.

In many, many cases, patients suffer because a chart was incorrectly filled out, or no one looked at it, or the treatments that were requested did not occur. Especially in American hospitals, where the staff are almost always overworked (all praise the Bottom Line), it is very possible that someone will make a mistake in process execution when it comes to checking on patients and implementing patient treatments. Not necessarily because they’re incompetent or malicious, but usually because they simply do not have the time to do everything they need to do, or because you fell to the bottom of their priority list and then they went off shift.

All of this is to say that you need to take an active role in your care or (more likely) the care of your hospitalized friend or loved one. And that responsibility is: check to make sure things get done.

That responsibility is non-negotiable from a survival perspective. If you go into a hospital, or someone you care about goes into a hospital, someone in your family or friend group needs to take on the role of patient advocate. That person assumes the following duties:

• Understand the proposed treatment, in detail.
• Understand the proposed patient care requirements and expectations, in detail.
• Understand the risks of the procedure and care requirements.
• Find out who to contact if there is an issue, and the best way of contacting that person.
• Form a personal relationship, if possible, with everyone involved in the patient’s care. Know the nurses’ and doctors’ names, and be recognized as advocating for the patient.
• Check on the patient as often as possible (at least once per day) and confirm as best you can that all the charted actions have been taken and that the patient is not experiencing some form of distress.
• Read and have access to a copy of the patient’s documented end-of-life care instructions.¹

If the patient advocate does nothing else, they should at least confirm the following points:

• The patient has been fed and has had liquids.
• The patient has used the bathroom, and has been cleaned after doing so.
• The various wires, sensors, and IV lines are still in position and functioning without causing pain (or not more pain than expected, anyway).
• The patient’s wound has been dressed properly, and the dressing has been changed in line with expectations, if there is a wound.
• The patient has taken their medication, if they require medication.
• Someone has checked the patient’s condition and reported it to their doctor on the listed schedule.
• Someone has followed up on any treatment changes or deviations.
• The patient is following the treatment regimen, whatever that is.
• If possible and advisable, the patient has walked around at least once or twice each day.
• If elderly, bed-bound, or sedated, the patient has been turned or moved as needed to prevent bed sores.²

If nothing else, the patient advocate should get to know the nurses involved in the patient’s care. Remember that nurses usually know more than doctors when it comes to the patient’s condition — they see the patient more often, they are more involved in the treatment regimen, and they are usually more personally involved in general. Nurses care on a personal level. Hospital doctors, even the best doctors, focus on charts and statistics. Your primary point of contact should probably be the nursing staff.

Patients who do not have advocates receive worse care. It’s as simple as that. Even the best nurses cannot be with a patient all the time. Even the most committed doctors rely on the chart. Things get missed; mistakes get made. It’s human, and unavoidable, and it only becomes a real problem when no one catches an issue that kicks off a disaster cascade.

If you do not have an advocate, and you’re going into the hospital for any length of time longer than a day, you need to create an advocate. My advice is to make friends with and then subsequently bribe the nurses. Make a point of meeting the nursing staff who will be responsible for your care, if at all possible. Then make a point of being as friendly and helpful as possible, and arrange for little gifts or treats for your nurses if you can. If you can’t do any of that, simply thanking them repeatedly and often will improve the quality of your care. Actually, you should do that anyway. Politeness costs nothing and can buy you as much as your life.

Otherwise, you have to be your own advocate. In that situation, keep two things at the top of your mind: never be afraid to ask for help, and never assume that someone is coming to check on you. No problem that you encounter in a hospital should be ignored if it is relevant to your condition. I’m not talking about how many juice boxes you get, I’m talking about things like “Huh, that’s weird, that rash wasn’t there before,” or “I’m coughing more than I was yesterday.” Report any change in your physical condition, even seemingly minor changes, immediately — and make sure someone looks at it.

This is particularly true if you are in an isolation ward; it’s human nature to avoid extremely sick people, and that bit of human nature extends to healthcare professionals. Someone with a really nasty disease like Ebola or, in the current environment, COVID-19, may need more advocacy than someone without.

There’s a tricky addendum to all of this — don’t be a pest. If you’re calling for juice every five minutes, eventually you’re going to wind up in a “boy who cried wolf” scenario. Make sure you consistently get the care that you need, but recognize that trying to get the spa experience that you want may end up being counterproductive.

Go into a hospital experience with the right expectations. You are probably not going to be pain-free, if you have any kind of major problem — you are probably going to be pain managed. You are probably going to have to do some work to help yourself — hospital staff usually won’t make you get out of bed. You are probably not the highest priority on anyone’s list — there is always someone sicker than you, or at least you’d better hope there is. Your job as a patient is to ensure that you get in, get out, and get well with the minimum of muss and fuss.

With that in mind, our next point is…

Treatment Instructions: Not Just a Suggestion

This can be the hardest part of a hospital experience, because “treatment” is hardly ever a synonym for “easy time loafing around.” Most illnesses that require hospitalization involve some sort of serious infection or traumatic event, and most treatments require some degree of pain, effort, and/or physical therapy to get someone back on their feet.

The patient’s expectation should always be that the treatment will not be pleasant, and should be done anyway. This is a goal-focused view: if you don’t get the treatment, your problem doesn’t get resolved. If that problem is life-threatening, and you want to live, getting the treatment means signing up for some unpleasantness in exchange for your life. In almost all cases, getting the treatment means unpleasantness now in exchange for an improved quality of life later.

Keep that goal firmly in mind, because treatment very rarely ends at the hospital door. If you are supposed to walk around every day, walk around every day; it’s not a good idea to lie down all the time. If you are prescribed physical therapy, do the physical therapy. It really will help. If you are prescribed medication, take the medication. Do not deviate from the medication instructions or add your own home remedies. Medication instructions should be confirmed with your doctor, but once you’re sure that’s what they want you to take, take the pills.

You go to doctors because they have extensive medical training and you don’t; it doesn’t make sense to second-guess it. Treatment instructions are not suggestions, they are the medical best practice to get you from point A to point B. If you don’t want to arrive at point B, by all means, ignore the instructions. If you do want to get there, follow the instructions to the letter and ask your doctor about any changes, even seemingly minor ones, that you want to make. Expect that it will be hard. Expect that it will be painful. If that’s your expectation, nothing will be surprising and you won’t get disheartened.

Budgeting: The Necessary Evil

Last but certainly not least, there is an elephant in the room. American healthcare is insanely expensive. I mean that literally — if sanity is the consensus of opinion, then American healthcare is ludicrously, shamefully, horribly, insanely expensive. No one else on this planet pays what we pay for equivalent healthcare. No one. Not one single citizen of any other country. And the results do not scale with the payments. That’s not political opinion, it’s just a fact. It’s so much of a fact, I’m not even going to bother linking proof here; giraffes exist, the sun is bright, the Pope remains Catholic, bears shit in the woods, and American healthcare is ruinously expensive.

So — if you are planning to receive healthcare in America, you need to budget for it. Since planning for healthcare needs to account for unforeseen circumstances, that means having insurance, all the time, if at all possible. This will cut your costs for a hospital stay by anywhere from about 30% to about 90%, which is a great help to budgeting.

But there’s a problem: neither your insurance provider nor your hospital will tell you how much any given procedure costs. They will not even provide an estimate.³

Seriously. If you don’t believe me, try it yourself. Give ’em a call. This is the one service industry that honestly does not give a crap about your reasonable expectation to have approximate knowledge of price points. It’s your money or your life, literally; they have you over a barrel and they do. not. care. about telling you how much your treatment will cost.

All of this means that until you go into the hospital and actually have your procedure done, and then actually receive the bill, you will not have any way of knowing for sure what you will be expected to pay. And that’s just how it is, until someone changes the system, which will probably require legislation.

That is not to say you are without resources. Google is your friend here, once again. For almost any surgery, you can extract an average price range from a simple search (e.g. “what is the average cost of spinal disc replacement surgery” gives me a result of between $16,000 and $48,000). From there you can work with your insurance representative (if you are lucky enough to have insurance) to figure out what percentage of that cost they are likely to cover, and which items they do and do not cover. There are also several online services (for example, Healthcarebluebook.com) which offer cost comparison tools.

This, if you are lucky, will give you an approximate cost range.

That approximate estimate should be treated as a rough number, not anything approaching a certainty. When in doubt, budget for the highest estimate. Also keep in mind that many medical payment plans do not charge interest, and that is something that your hospital should be able to tell you.

If you have insurance in the US, including Medicaid or Medicare, there is a good probability that you will be able to pay a hospital bill without declaring bankruptcy. But maybe not; lengthy hospital stays can run to hundreds of thousands of dollars, and even small percentages of hundreds of thousands of dollars can still equate to a lot of money. If you lack any form of insurance, you will be stuck with the total bill, and it will be life-altering.

So let’s get one thing out of the way up front: it is not a failure to have trouble paying medical bills.

Let me say that again for the folks in the back: IT IS NOT A FAILURE TO HAVE TROUBLE PAYING MEDICAL BILLS.

Remember, medical bills in the US are literally insane. Sanity is recognizing that normal people do not have $10,000 in disposable income to throw at a sudden medical problem. You should not feel bad if you can’t meet an insane expectation.

The only good news is that you actually can bargain when it comes to medical bill payments. It is worthwhile to ask about different options for bill reduction — for example, making a lump sum payment in exchange for cancellation of some of the bill, or establishing a payment plan, or requesting a comparison to equivalent payment plans from other medical services providers. Ask to speak to the hospital’s medical billing manager to do any of these things, and then ask for the moon. The worst they can do is say no, and if they feel that you might become delinquent in your debt they may be willing to make concessions.

It is worthwhile to try to peg your payment to equivalent bills the hospital charges Medicaid, for example, and to see if you qualify for hardship relief programs in your state or at the federal level. See what the billing manager can do — remember, they are incentivized to help you find a way to pay. There are also medical payment advocates — lawyers, caseworkers, and non-profit groups — who specialize in this work. Do not be ashamed or afraid to reach out for help, it could literally save you tens of thousands of dollars.

Ultimately, everyone has to do the math — is it worth it to get treatment? Is it more financially acceptable to go to a hospital or search for an alternate source of care? Does it cause more harm to get treatment than to remain in pain, if the financial hardship would wreck your life worse than the illness? In some cases, and this is awful… is it more financially advantageous for your family if you live or die, especially in cases where even the best treatment is still just a palliative measure? These are the choices that must be made in America, land of the free, home of the brave, ground zero of healthcare price insanity.⁴

Survival is a Team Effort

We live in an age of great medical progress, and if you can get to a hospital your odds of surviving a huge variety of illnesses increase dramatically. That’s the good news. We don’t have the best healthcare system in the world, but it’s an extremely technically advanced system and Americans have access to very good treatment, if you can afford it.

And again, I am not here to insult or denigrate hospital healthcare professionals. I’m here to give you advice on how to survive the hospital healthcare system. The healthcare professionals are doing a stellar job, as best they can, within the world as it is. If you do nothing else while in the hospital, thank your doctors and especially thank your nurses. However hard you have to work to survive a hospital stay, they are likely working harder.

But, and this is something we have got to get used to as a society, surviving a hospital stay is not guaranteed and is not always an option. To improve your odds, it is very much worth your while to be sanitary, have an advocate, follow your treatment regimen, and be prepared to pay your bill. And then, once that is done, remember that healthcare is a team sport.

You should expect to fill the role of the team manager. You should expect that you, or your advocate, will need to remind everyone involved of what is going on, what the plan is, and what you’ve done so far. You should expect to keep detailed records of actions taken by your medical team. You should, in short, expect to be doing all the things that a proper healthcare system with a proper institutional framework and a proper database ought to be doing, if we lived in a rational world.

If you keep these expectations, you will not be disappointed, only pleasantly surprised. Pessimism is not always validated, but in this case it’s a very good idea.

¹Always, always, always fill out the end-of-life care instructions, whatever those might be called in your state. Hospitals usually provide a template of these forms in advance of major procedures. If they don’t, find a template online (searching for a DNR order is a good start) and fill that out. Make sure you sign the document in the presence of trusted impartial witnesses. MAKE SURE you and your advocate understand this document and have a copy. This is one of the single most important familial, moral, and financial decisions you will ever make, so make sure you understand what you’re getting into.

²Bed sores sound like a small problem. They are not. The body will quickly develop pressure-related injuries if left lying in one position for too long — even a few hours is enough. You don’t see this happening to you on a daily basis because you make constant small adjustments to your posture and position, and because you probably have enough fat and muscle mass to cushion your skin from your bones. Old people often lack the fat and muscle mass to form this cushion, and anyone under sedation or stuck in bed becomes an immediate risk for a pressure injury. Now look here. That’s a pressure injury. You don’t want that, do you? Hell, I’m traumatized just having seen the picture. If you think that looks like a major infection risk, not to mention a painful and difficult wound in its own right, you’re correct! Avoid bed sores at all costs.

³I’ve recently gone through this wringer. Back in 2019 I had spinal surgery. My insurance wasn’t allowed to tell me how much it might be (because they figured it might be a liability to do so). The hospital sent me on a wild goose chase to try to find a patient representative who could give me an estimate; it took me two weeks to get a person on the phone, who then flat-out refused to provide any estimate (again, for liability reasons). If you can do better, you have my sincere admiration.

⁴And if you think that’s an unpatriotic statement: go fuck yourself. I mean that very literally. Take yourself into another room and go fuck yourself. You’ll be doing more to help the problem by getting out of the way of people who are actually trying to fix the issue. The most patriotic thing any American can do is to stand up for the ideals of life, liberty, and the pursuit of happiness, and our insane medical costs are inimical to all three. I don’t want to hear any more broken record chatter about how we have the best healthcare system on Earth. It’s propaganda, it’s bullshit, and it’s literally bad for you.