Only Anecdotal

The stories that make the numbers

Archive for the ‘consumers’ Category

Decisions, Decisions

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After some drama and bated breath, we learned last Thursday that the Supreme Court–the same Supreme Court that has let me down a few times this term (i.e., regarding strip searches and campaign financing)–has upheld the Affordable Care Act… kind of.

And then, of course, the reactions poured in.

I want to be happy about this–and I am surprised that the individual mandate stood up past this test. It is only right that every person in this country should have insurance to cover health. It is just a right, as I see it, that in modern civilization that we should not only pick up trash and fight fires, but also make it possible to seek prevention and treatment around the various facts of our human condition.

But I am still sorry not to see many things here. This should not be an individual mandate, but an individual right. We should not be fooling around with different insurers–I just do not believe that the creativity of market forces will bring us the best solutions around health. An enormous amount of effort now goes into knowing the particular rules of various health plans, people who work in the healthcare field focused not on figuring out the most effective treatment so much as how to maneuver treatment so that it is even possible financially.

I had a discussion this afternoon with a social worker in a hospital around our perceptions of sickness and death. Somewhere along the way we lost touch with the finite nature of our lives, perhaps because the potential to save lives has become so effective, perhaps because we have had the good luck of relative prosperity and longer lives, perhaps because we have so effectively warehoused and silenced those who do not fit the image of wellness that we want to see in ourselves. We simply give up on the question of long-term care (i.e., the dissolution of the CLASS Act), an unattainable financial goal perhaps because we have not spent enough time considering the need for it.

But to go into the homes and the hospitals and the nursing homes and the shelters, it is not such a pretty story: countless foreclosures, bankruptcies, tragedies in the make when people are hit–for whatever reason–by illness or accidents (and this includes even the insured). In spite of our best efforts, people still get sick and become disabled–or perhaps because of our best efforts at times: people who might have died without such effective treatment now live, though the support they need to live their lives may now be much greater.

I want to cheer for the survival of the individual mandate, but I fear that having it without Medicaid expansion–and dare I say, without a single-payer system that includes long-term care, healthcare may improve, but not reform.

And the naysayers–the states that will simply refuse to participate in any efforts at all toward change–are the undoing of a country as told on one front, a country divided under the illusion of liberty, a country that pretends to save lives, but in the process refuses to accept and represent all of its citizens.

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2 Jul 2012 at 9:31pm

Tea and Technology

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Being invited into a person’s home is an enormous privilege. Most people I see have recently been quite ill, or more often have chronic ailments that have put them into the situation of wanting to find out how they can stay in their homes, so a good number of them also spend some time apologizing in advance for the mess.

With all the technology that is available now, I can see that it would be far easier and faster for me to teleconference. It would save my driving time–and mileage costs–and the consumer would never have to worry about the mess in the house. We could talk, and I could look things up immediately in my office, much more easily than is often the case when I go out. And I could see more people. I could teleconference with hospital staff, and even meet with patients if portable devices were available there.

But the problem, you see, is that you cannot drink tea by teleconference.

You cannot shake hands, or smell the lemon–or gosh, the kitty litter. You cannot sit beside a person in a hospital for a few minutes, and you cannot run into a colleague in the hall.

I see a tremendous solution in this technology to the difficulty so many people have just in securing transportation to medical appointments–or at least some of them. It could open so many doors, decrease the number of times a visiting nurse has to go out to a home…

But I think of the woman I saw two weeks ago. She had just made coffee when I arrived, in spite of the infection that was developing right then, post-surgery, in spite of the fact that a day later she would be in the hospital once more. She told me about her pets, her life before moving to this country, the flowers she had long ago planted in the backyard–and I could see the hostas from the kitchen table.

She was alone in the house, and spent many days without seeing another person, she told me.

Another couple showed me the schedule of their appointments to a variety of doctors and clinics, the pharmacist. It seemed to be the only time they left their house, and their lives revolved around it.

“Being young isn’t for sissies,” a consumer once told me. He confessed later that he had stolen the line from Bette Davis. But he said it was true–I was trying to figure out how he could get some help while his wife recovered from flu. He had just come home from the hospital after a bout of it himself, and they went round and round with that, then pneumonia from hospital to home, or short-term rehab, then home.. and the insurance?

I see people all the time whose lives are focused on their healthcare. It is hard to imagine them not going out to see their doctors this way, not to depend on the daily visits from a nurse. It would be so nice if the visits were not focused on this sort of monitoring, but if the people were healthy–even with disabilities–these visits would stop. It is a huge shock to lose a friendly face who comes every so often, or even just once in a while. It is hard to give up leaving home for a few hours, even to go through another blood test, or lecture. There is always the stop for lunch, the chat with the woman with the baby in the waiting room.

People with chronic illnesses and disabilities are often so isolated, and so easily defined not by their unique qualities as human beings, but by what is perceived by most of us as abnormal: their illness, their disability. I wonder, if we remove the barriers to easy treatment with telemonitoring, with other technologies… can we also devote so much time and expense into removing the barriers to bringing people back to the community? Can we devote the savings to better transportation for non-medical needs? Can we build better communities in general, more accessible housing, more available housing? Can we figure out a way to make it more possible for people to use their time in ways that they choose?

Can we fill the gap that we will create by removing so many in-home visits for providers, so many office visits for consumers?

Written by Only Anecdotal

25 Jun 2012 at 11:01pm

It Won’t Happen to Me

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Then they came for me
and there was no one left to speak out for me. (Martin Niemöller)

Last week was a rough one in the trenches. I had a short week, but found myself shaking my head again and again at the distinct tragedies I was watching.

Now, everything I write here is based on my own experiences, and not on any sort of surveys or data I have collected over time. But usually, I find later that the trends I see are real (most recently, my obsession with outpatient observation status increasing in hospitals over the last three years was substantiated).

But I have to say, judging from the sheer number of people I see, and from the increasingly dire circumstances they find themselves in, the healthcare crisis has hit levels I never imagined.

I think it is far worse than most people think, because most of the people who are in real trouble are completely invisible. Or, more exactly, they are inside, and isolated, either in hospitals or nursing homes, or in their own homes–provided they still have homes–which they rarely leave. Or they are in shelters, hidden because they are in places that no one wants to go. It is sure that we all know someone–a family member, friend or just an acquaintance–who has lost everything after an illness or disability. The problem is only getting worse.

I write today, on the eve of a Supreme Court decision, with a great feeling to continue the advocacy. But at the same time, I am aware of the Cassandra effect. Do we believe that this is real? Do we want to?

 

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18 Jun 2012 at 10:11pm

Compliance

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I was talking last week to a group of intensive case managers in a big primary care practice that is moving to a medical home model.

Now, I like my work a lot, especially when things click, and it really is a matter of helping people navigate the system. I like it even better when I get to tell the changemakers–legislators, heads of healthcare systems, etc.–what people really want and need.

The problem is, people often do not know what they want, much less need. And this creates a situation where other people, or whole systems, try to dictate this to them. Or more exactly, try to dictate how people should live their lives in order to be healthy, and therefore happy.

Health and happiness, though, are qualitative terms that are not easily measured by what may be deemed as wellness in many respects. If a person feels fine, that perception is unlikely to change unless something changes rather dramatically in qualitative measures: it hurts, or it keeps me from being able to do something.

And even then, it seems to me that the change has to be rather sudden. Loss of ability over time allows for adaptation. And in general, this is good.

But in comes the healthcare system, with its idea that it has to fix things.

Or so I hear. There is a rather amazing power dynamic between many a sick patient and a doctor. The one that is perhaps skeptical about all the prescription bottles sitting on his kitchen counter (how much they cost, and how they are making him feel) and the doctor who sees a treatment as the thing that will significantly improve that patient’s quality of life.

So, I spend a lot of time working on issues around quality of life–housing, for example. Or transportation–not just to medical appointments, but to go out to the store, or to the hairdresser (amazing how often this concern comes up). And I also spend a lot of time telling people what their rights are, what choices they have whether in the hospital or in trying to make home modifications. And the person who will use the resources is always the person who drives the bus, in my book.

The case managers I saw last week all were happy about this, and agreed.

So, I am always eager to hear about the professionals I work beside, too. What is frustrating to them? What would make their jobs easier?

I asked the case managers what their biggest challenge was.

Their answer?

Compliance.

It was universal, and it stunned me. I was thinking about that as I visited people in the next week, people in varied and often drastic situations. I was thinking about concerns around hospital readmissions and chronic conditions that often lead to more disease, or worse. And I was thinking about this whole idea of compliance, and what it really means.

I think it is a matter of control. Some people may know full well that they feel better if they stick to a regime of one sort or another, and still choose not to do it. But there may be a lot of other issues that lead to what appears to be lack of compliance.

Trust

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There sure are a lot of comparisons between doctors and car mechanics. I guess I can see the similarities. Consultants with expert knowledge that costs us a lot. Repairs needed. I understand that the comparison is often made to emphasize the point that that we are rather free to shop around for people who do repairs on our automobiles, and there is–to some extent–more transparency in that process than there is in the healthcare process. We do not depend on insurance for most car repairs, and not at all for maintenance. And our lives can be significantly altered by the quality of work; in fact, shoddy workmanship on those large pieces of fast-moving metal might well land us in search of services from our local body (human body) shop.

But I have to say that in urgent situations both of the automotive and of the human sort, we are rather at the mercy of the closest trauma center. And really, we can only hope in these situations that

 

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4 Jun 2012 at 1:11pm

Why War Is Hell

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He was alone in the hospital room, his wife gone for several years. The rest of his large family lived relatively nearby, but he said he saw them rarely. The man was near ninety years old, and now quite sick.

Today, on Memorial Day, I am thinking about this man, and many others I have met over the years.

I am thinking about my mechanic back in St. Louis, a man who was capable of figuring out (at small expense to me) my first car, a 1972 Chevelle that had been altered from automatic transmission to standard, three-on-the-tree. He worked in a garage where his wife kept the books and his buddy worked on the cars, and he oversaw things–telling stories and doing the car work, too, when no one else was there to talk to.

I am thinking about my neighbor, who was not such a storyteller, but one subject did inspire him, as it inspired many other people I grew up with–people whose tales became more real after my visits to the landing beaches in Normandy, after I heard stories, too, from the people who lived there. I am thinking about my uncle, his South Pacific stories. I am thinking about my dad who missed Korea by a weekend–he went home on leave before he was to depart, and the conflict ended.

When I am working, I am mentally searching through the grab bag of possibilities for services. So, asking the question to veterans often prompts a lot of memories–stories that typically involve time, place, but stopping short of specifics or feelings. “Some things should not be discussed,” the man I first mentioned told me. But that day, this veteran told me about the uncertainty, the people he thought he might have killed, friends he saw die. As I left him, I wondered how many times he had told those stories. I wondered about his life now. I thought about courage, and the notion that courage involves shielding people back home from the horror of it all. I don’t know that it is ever possible to do that. Yes, war on every level is hell.

I have a book that I carry around that has descriptions of VA benefits and who is eligible for them, but it is a system that I find quite baffling. In many ways it is easier to understand and navigate, but it is also so separate from the state services I know, so separate also from the rest of the medical world. I am used to walking into busy hospitals that greet their visitors with health messages, gift shops, coffee. The VA hospital greets the public with flags first.

But before they may reach the VA healthcare system, veterans have to enter the system. Veterans are not automatically handed benefits, but have to ask for them. If disabled during service, they have a determination of percentage of service-connection to determine the level of benefits. So, for that disability, the VA works quite well. But, as a veteran’s agent once said to me, “Don’t get hit by a bus and expect the VA to cover it.”

Towns in Massachusetts have given cash benefits to veterans who need them since the Civil War. And there are other federal programs like Aid and Assistance that help veterans (or surviving spouses) as they age and need more help, regardless of the veteran’s service-connected disability. I have met some great people who work for the VA, and as veteran’s agents in our towns. I have seen people get help that they never realized was available.

That said, it can be a difficult system to maneuver, with a great deal of paperwork, and long wait times for benefits.

So I wonder, if we are struggling right now to meet the needs of the veterans who ask for help and are qualified for it, how on earth do we expect to meet the needs of returning veterans from our wars today?

Associated Press reported on May 28 that forty-five percent of the returning 1.6 million veterans now are filing disability claims with the Veterans Administration. War is hell, surely, but from what I see, the war truly begins when it comes back home.

Often I see people who have served the United States, lost love, lost life, lost hope in many ways, but the saddest realizations come when people find that the promises–we will always cover you–cannot be fulfilled.

It is an enormous sacrifice to serve, we all know, but when we go into wars, it is the conflict at hand and the costs directly related to fighting the war that get the money. After the war has ended, at least on paper, it is too easy to forget. It is easy to dismiss the same old stories that we family, friends, spouses, kids hear over and over and over. It is easy to forget the service connected nightmares, the loss, the plea–I was there for you when you needed me, my country. Now where are you for me?

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28 May 2012 at 8:52pm

Are we smart enough?

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Some evenings, I like to go to meetings that take me to the flipside of my day job–a job that focuses on the day-to-day needs of people I see.  I like to enter a world where ideas freely flow, where people think about what is possible with technology, with innovation in all spheres.

But then, as I sit and watch, I so often find myself feeling like that “yes, but…” person–a role that makes me very uneasy. You see, I am idealistic, a dreamer–and yet, as I listen to creators, I find myself ever questioning feasibility, accessibility, practicality. And I keep wondering if there is not a better way.

To be more precise, I come from a nuts-and-bolts operation, the non-profit, state-funded program. Things move slowly, often somewhat inefficiently, and I maneuver through systems that operate in archaic and difficult ways.

And beyond the question of public services is the bigger issue of people themselves, people with varying experiences, people whose adaptability varies also, greatly. Not always, but often, it can be difficult to bring in the new, the unfamiliar.

Enter the smartphone.

Yes, the smartphone, the I-Phone, the apps, and the digital world as a whole.

So much potential, and I can see as I hear the ideas how much it would help so many of the people I see.

I think of the woman a few weeks ago who had the meticulous paper diary of blood sugar levels, food she ate, things she had changed, stress level. If only she could have plugged it all in. (and then, also, if only her doctor had time in a 15-minute visit to review the data and make sense of it).

This woman does not have a computer.

I was fascinated this morning as I read the newly-released poll from NPR, Robert Wood Johnson Foundation and Harvard School of Public Health. It discusses the difference in perception about our healthcare system, depending on whether a person has had a chronic illness or disability within the last twelve months. You can read a summary of the findings here. I was not surprised to learn that people who are sick have a worse impression of what is going on. But more on that later.

The data fascinate me in this sort of study. So, while I find myself distressed (though not at all surprised) to learn that nearly a quarter of people who have faced a healthcare crisis have also faced a “very serious” financial crisis as a result, I am astounded to read about telephone use.

Yes, telephones.

In the most basic modern mode of communication, what is a person’s link to the outside world? (and I must add that the individuals polled seem to represent a good cross-section of adult age groups, as well as income brackets). A full 16% of individuals polled said that they do not own a cell phone.

I wish I knew more. I wish I knew about internet access, whether households have computers, or tablets, or smartphones.

At one of these “ideas” meetings that I love, I started talking to a man. Great ideas–I could see how useful they could be. And I told him about what I see everyday–the people with limited computer experience, the people who could really use the ease of technology, but who need for it to be accessible.

I felt that I was talking to another world–he told me that everyone has smartphones.

Another man, at another meeting, told me that I-Pads are great for people with disabilities, very intuitive, and insurers would pay for them, because it only makes financial sense to them if it can save on office visits. On what planet? If the insurer happened to be Medicaid, for example, can you imagine the uproar? Poor people using government funds to get Apple products?

But the the question of accessibility is not only financial, or technical. It is also very real. What about a person with low-vision, or no vision?

And that issue–as I note every time I look at so many things in my job–is not limited to the idea-world after work. A woman, at a day-job-related meeting, explained that an application for her program–which isonly for people with disabilities–is not available in an accessible format, yet.

I have the same feeling every time I pass by a new subdivision, all with lovely front entrances, elevated, stairs heading up to the door.

What are we thinking? If I could impress one thing on any new thinker, it would be to consider the user first and foremost–not an ideal user who thinks and looks like you, but a user who really needs that great idea of yours to work for him, for her.

Consider starting from scratch–where you turn it on, for example. Consider training, equipment, and whether it is usable at all as you are creating it, for whom you are creating it.

 

 

 

Written by Only Anecdotal

22 May 2012 at 7:33pm

On Waivers

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This morning, I heard the late news that Katie Beckett had died. She was thirty-four years old, and had evidently been sick. But Katie had a much fuller, and much longer life than she might have if she had remained in the hospital where she was at age three. Medicaid paid for her ventilator use in the hospital. Medicaid refused to pay for ventilator use in the community–although it was possible–until her situation was taken to Ronald Reagan in 1981. Katie, and her mother Julie, changed the lives of so many people by bringing attention to the nonsense of funding people only to stay in institutions when care could be provided at home.

Katie is an inspiration, and this special post today is in her memory.

The fact that Katie Beckett waivers exist is a wonderful thing, but I am ever hopeful as we look to the future of healthcare, that the waiver–the exception–will be to support institutional stays. I am ever hopeful that the default setting will be to provide needed supports at home.

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19 May 2012 at 11:59am

Qui est “in”, qui est “out”?

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I was listening to the radio on the way to work, and from the regular accident reports, the words caught my attention… again: “The driver remains in the hospital under observation“.

Now, when I was less obsessive about uncovering the use of language as a bureaucratic weapon, I would have thought that this was just a descriptive term–hospital stay just to make sure that the driver was not hurt more badly than originally suspected. But since I have been watching people in hospitals for some time, the first thing that leaps into my mind when I hear the words “observation” and “hospital” in the same sentence is this: does the consumer know that he/she has not been admitted as an inpatient?

To most people, and to me when I am in a rational mood, this seems ridiculous. If I were sick enough to venture near an hospital, I would not have doubts once they got me out of the emergency department about whether I was in or out. I have a band on my wrist; I am in a bed upstairs: I have been admitted.

But of course, anyone who works in a hospital, or who has been through this already, knows very well that this is an incredibly naive assumption. In fact, as I mentioned in my last post, Medicare is aware enough of the confusion that they have an informational page to inform consumers to ask about admission status.

For Medicare, and therefore for other insurers, it makes a tremendous difference whether a person is inpatient or outpatient, an A and B type difference, a copay type difference, and the consequences can be very ugly, especially if a consumer goes in expecting any services after the hospital stay, be they visiting nurses or short-term rehabilitation.

This is the sort of thing that upsets me tremendously when I visit people who are already sick or injured–not at their optimum speed for figuring things out. The rules may well be there, but the rules are confusing–especially for people who do not already spend enormous amounts of time thinking about hospitals or insurance. And honestly, other than those who really love the healthcare world and work in it, who would want to spend all their time deciphering Medicare?

This is not a new concern, of course, this crackdown on hospitals that may get soft on their admission policies. In fact, it is rather difficult as I see it for a doctor to override the decision–which is aided by software like McKesson’s Interqual.

It is not that I believe people should remain in hospitals longer than they need to be, or that hospitals should be providing respite to caregivers. But not unlike the use of emergency rooms for non-emergency primary-care concerns, hospital inpatient rooms may easily be the repository for people whose needs have gone unmet for some time in the community, due to the woeful lack of resources for long-term care.

And lest anyone think that by long-term care, I mean nursing homes, let me be clear: I mean support in the community, long-term support for people with chronic illnesses or disabilities. Without this support, people get sicker, have accidents, and die. Pardon me if that sounds melodramatic, but in my experience, I have to say–anecdotally–that it is true.

But given what we have to work with, which are people who most likely would rather not be in hospitals, the least we could do is to be clear about how we are treating them. I do not believe it would make people happy to have someone explain, “Now, Mr. Smith, just to explain, we are moving you upstairs to a room, but under observation status. That means that your insurance will (or will not)…”

Well, that is a tough conversation, isn’t it? And to continue, “And unless we admit you later, it also means that you will be discharged back home with no extra services.” And then, of course, we should ask Mr. Smith if he understands.

And chances are, he will not. Which is why advocates filed a lawsuit challenging the policy last November.

And yet, we continue to put people into hospital beds, observe them, and let them fret about the 20% when they get home.

There is a difficult balance when a system does not work well to meet the needs of its consumers. It is very easy to blame people whose lifestyles contribute to their poor health–and accurate often enough. But where is the support to monitor early stages of illness? to spend the time necessary to answer a concern? to involve consumers in a system that does not terrify them?

Most people do not ever want to be admitted as inpatients into the hospital. They do not want to be there under observation. They do not want to go to emergency departments. Hell, they want to stay away from that place!

And the truth is that at some point, we all will probably be in one or all of these situations. It should be rare.

It is not rare: we ignore our health, and we fear illness. We fear death.

Or more precisely, we fear feeling powerless.

And not just powerless in the face of illness or disability itself.

Consider this: many people hate checkups, and some do not even have primary care at all. Why? well… think of the power dynamic. It is so easy to forget once you feel comfortable with doctors, and with the healthcare system in general.  But for everyone else, could it be that many people ignore their health because they feel powerless and ashamed in the relationship they have always had with healthcare providers?

And when we keep confusing people and sending them bills that they do not understand, who can blame them?

Written by Only Anecdotal

14 May 2012 at 4:17am

Not Ready for Prime Time?

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The son of the patient was nearly red, and gesturing when I arrived.

“Dad is not ready to go home yet!”

A hospitalist stood in the hall, looking at the floor, then looking up every once in a while to make a comment.

“We cannot change the decision.”

“There is nothing we can do.”

“It is not our decision.”

“It is the system.”

The System.

We all hate The System in its bureaucratic anonymity. And we especially hate it when someone tells us that The System is responsible for a decision that will significantly alter our expectations. The son of this particular patient had expected what had happened with his mother years before: his father would be in the hospital for a few days, then go on to the neighborhood skilled nursing facility for a few weeks of short-term rehabilitation. But times have changed, and despite the son’s own illness and compromised ability to care for himself, let alone anyone else at the time, Dad had an overnight at the hospital, but now was about to go home.

“So where do I go to complain?” the son yelled back at the doctor.

A fair question, in any circumstance. It should not be a difficult one to answer, either. But it was, or so it seemed, because the son was still yelling, and the surrounding staff were still telling him that they were sorry.

And so, the patient’s son decided to complain to me. “Look! Look! This is what they are doing.”

He handed me a discharge summary, signed and ready to go. And beneath that was the paper that explains how to appeal to Medicare if you disagree with a discharge.

So, the paper does tell patients where to go to complain–and actually, the patient’s son was in the process of following suggestion #1: “You can talk to the hospital staff, your doctor and your managed care plan (if you belong to one) about your concerns.”

But getting to suggestion #2, which involves calling the area Quality Improvement Organization (Masspro here), is not obvious to most people, even Medicare consumers. And finding that Important Message from Medicare instruction page buried within a stack of paperwork on a sick patient’s bedside table is not terribly likely, even if the patient does remember signing something downstairs–wasn’t it about HIPAA?– and even if someone has some vague idea that there must be a higher authority in the hospital, or beyond the hospital, that takes complaints–and responds to them.

So, I wonder how many patients file appeals about their discharge. I have to admit that after many years of hanging out in hospitals, I would never have guessed that my insurance company was the place I really needed to call if I disagreed with a decision that I assumed a doctor was making.

I also have to say, most people who do not feel ready to go home are never this loud about a discharge decision. Loudness upsets everyone, and often causes more problems than it solves–or so we think. Most people disagree quietly, if they think to disagree at all, and they go home. There, if things are bad enough, they may remain unsatisfied about their health in general, and possibly with the entire system meant to monitor it.  And they may well try to ignore doctors and hospitals as much as possible.

So, just in case it ever happens to you, and you are on Medicare, be prepared. If you are admitted as an inpatient to the hospital, and think that you are still sick enough that you actually want to stay admitted as an inpatient in the hospital, you may have to pay for the extra time if you do not appeal before midnight of the planned discharge date. Figuring it all out after the fact, when you feel better at home, can be an expensive option.

And of course, an impossible one if you do not notice that Important Message from Medicare until after your hospital bed turns into a pumpkin.

Now, the sticky part in this entire situation is not only the frustration of the discharge, but the fact that this patient was never actually admitted as an inpatient to the hospital.

Who knew?

Certainly not the patient, or his family, who had no idea that there was a distinction between inpatient and outpatient if a person was lying upstairs in a hospital bed. Doesn’t “observation” just mean that someone is watching over things?

And who really would know? Unless you know. You know if you work in a hospital, I hope. And you know if you are especially savvy about the healthcare system, or at least Medicare. And you know if you just watched a friend faced with a similar situation. And you just might know if you read all the mail that you get relating to Medicare–it is very possible that there was a big instruction page that you received at some time…

But more on this question next time.

Now, I want to say that I understand that family members should not be using hospitals for respite from caregiving. And I also know that ideally, care that can happen outside a hospital setting should happen outside a hospital setting. But no matter the reason, a consumer or family member should have a clear understanding of how decisions are made, and who is making them.

And I also want to say that understanding what happens in this world of hospitals does not mean that we agree with the way care is administered in them. Or that we do not think that there might be enormous chronic unmet needs in the community that end up in an emergency room because by that time, they have become acute needs.

Part of the difficulty in communicating with consumers about The System comes simply from working in The System. At a certain point, we begin to understand how these rules work, and why they exist, at least in our own little part of it. But the danger is that in that process is forgetting how twisted and confusing it all is to the people who do not encounter this world on a daily basis. And ironically, theirs are the lives that are most affected by the decisions that are made during that hospital stay.

It requires an intentional effort to make sure that hospitals give people a way to interact with their decision-makers effectively, and on a human level. Without that in place, without giving the consumer the ability to be heard, we all lose out. We blame our own frustrations and those of the consumers on a large, anonymous entity that is not only omniscient, but omnipotent, as well.  There is no meaningful dialogue. I imagine that in the long run, this is also very expensive.