Only Anecdotal

No numbers, just stories

Posts Tagged ‘healthcare

One Wish

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I see that the future is here already, care integration, or what it may be…

I see that the people I see still need help, more perhaps now than they did in previous years. Perhaps it is the years of trying that have worn people down, or perhaps it is my own wishes.. wishing that we could do this right. It really involves more than a new coordination of healthcare; it is a more holistic thing we need, though.. a recognition of all that life has to do with health, and all that health has to do with life.

Will we succeed in these new ventures? I want to be optimistic about our new care organizations, what they may be, as we head into a new era. I want to think that the medical model that will prevail will expand and reinvent itself.

Wish. Yes, this is the best we can do.

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18 Mar 2013 at 8:09pm

Why Am I Waiting Here?

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Back last fall, when my mom had experienced another frustrating exchange with her primary care physician, she announced her plan of action.

“He never listens. I am going to bring this up at the next appointment.”

At that appointment, my mom swiftly asked her doctor, “Do you like me?”

I was taken aback by the question, and I believe the doctor was, as well. In talking to someone else about her concerns, my mom had learned of personal tragedies in her doctor’s life. Perhaps that explained his inattention, she thought. Or maybe it was true that he just didn’t like her much.

My mom was a difficult case, in many ways. An order to cut back on salt that she received in the hospital seemed so overdue that we wondered if it really was the first time she had heard it. She had given up smoking, albeit pretty late in the game. Her lifestyle was not an active one, comforted as she was by being home, immersed in a book,  or Downton Abbey… damned be exercise. Noncompliant, I am sure.

But aren’t we all? I mean, really. There is such a big relief in getting past that encounter with any authority… you know? those days, or weeks, behaving as we are supposed to… not necessarily to be healthier, or better in some other way, but to avoid the scolding (or worse). And then, we walk out, free at last… this is the problem with the relationship that even entertains the notion of  “compliance”.

And as I have said so many times before, compliance may be more a question of feasibility. If an individual cannot afford the prescribed medication, how will he be able to follow the doctor’s orders? If she cannot get to the doctor’s office because a ride never shows up, how can she avoid being a “no-show”? If I do not understand why you want me to change a habit, if the reasons you give me seem so intangible, why would I give up something I love, or start something I dislike? And speaking of this, why should I trust you at all?

I am very sure–have felt it myself at times–that what doctors perceive as noncompliance may indeed be just that: stubborn refusal to follow orders. In my mom’s case, I know that it was hard for her (though she did it anyway) to make the trips to the lab for endless blood tests for a doctor who seemed to dislike her, and who also seemed to have no notion of why these trips into the lab were so taxing on her. It is hard, after a bad–or even traumatically pointless–experience, to return to the doctor who started it, and have faith in the advice (or orders) that this doctor, or any doctor sometimes, hands out.

It is clear in this year that the climate is changing enormously. There is a much more noise now about the need to take the consumer’s point of view seriously. Is it real? Slowly getting to real, yes, I think it is. How can we make healthcare easier? How can we deliver care more conveniently, and effectively, not just for the professionals, but for the people who seek the care? I see people from the home care world now popping up at technology-related events where I never saw them a year ago. Social workers will cover the hospital not just during weekdays, but at night, on weekends, so that people who end up there will always have the opportunity to talk to someone about the realities of life, no matter when they are in the hospital. Can we afford continuity of care? I hope that we see the error of years of neglect, at the real costs of constantly cutting out the human contact in favor of the urgent, impersonal procedures. It is time that we need more–time for listening, and for actual, physical help–and smarter ways to figure out how to create more connections, not fewer.

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11 Mar 2013 at 10:21pm


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As I was driving to a meeting last week for the Dual-Eligible Demonstration Project, a man stood out near the stoplight. He was holding a sign, “I do not drink. I had a stroke and am homeless.” I nearly picked him up and took him to the meeting.

His story–the story reported on his sign–is far from unusual in my world. But it is unusual enough that the experts who treat strokes as an acute medical event still fail to understand the repercussions of health conditions on everything else in life–and likewise fail to understand the effects of everything else in life upon health conditions.

I am not talking about behaviors that are within an individual’s control; I am referring more to the chronic situations that come about first because of that acute medical event, and the difficulty not so much with the illness or accident itself as with the struggles in day-to-day life afterward.

The vision of projects that attempt to coordinate care for dual-eligible Medicare and Medicaid recipients makes a lot of sense, and could allow for the flexibility that can make an enormous in the quality of life of those individuals, and hence, in health outcomes.

But flexibility comes only when there is an understanding of the full picture of a person within the context of life, rather than within the context of a healthcare setting. This is where expertise of assessment comes into play, and where I fear that we are in real danger of getting tripped up by that very definition of expertise.

What is an expert? I see the established healthcare’s system respect for degrees and licenses, and see a structure that is resistant to accepting the expertise of the individual receiving treatment–except, sometimes, within the context of that treatment and the immediate needs around it.

It is not enough to share decision making, or to create a participatory system. More than that, the entire system needs to be flipped where the expertise of lived experience is valued as much as the expertise in the medical field. That clinical expertise is essential, of course. But it does not outweigh the practical aspects of life and the necessity of understanding how life changes all around when an individual’s health changes–and what can be done in all respects to improve the situation. We joke about a school of hard knocks, but the degrees we receive from life are just as valuable as those that we receive from studies within a well-established hierarchical system.

Part of the difficulty comes, too, from the harm that has come from years of medical arrogance. There have always been caring, wonderful medical professionals, and there always will be. In spite of any individuals, though, the power dynamic has allowed an enormous abuse, particular of people with disabilities, whose medical status amounts on a systemic basis to a problem either to cure or to ignore. The harm of this attitude is that mistrust of that system leads to mistrust of individuals–particularly in times of change where the powerful name the game–and where that power base remains so heavily weighted within the existing paradigm. More mistrust leads to defensive tactics, and to cynicism instead of listening, understanding, and working together.

Can the paradigm really shift in favor of the consumer in this new age of healthcare? I don’t know. I see vastly different attitudes about health and medicine in general in many other countries, where a broader range of health seems to be covered. But culturally those attitudes are so enormously different from the way we approach life here in the United States.. and we may not want to pay the taxes necessary to support such systems, even if we could accept that level of overt governmental control over our healthcare. But more flexibility? is it possible? Can we shift our system of medical care to one of health care, of care for people, that works, that truly supports the value of life, as is lived, itself? Time will tell.

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25 Feb 2013 at 10:12pm

The Buck Stops Here

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Now, I don’t make the rules that exclude people, the entitlements that are available only in specific circumstances, not so much by need as by some other criterium, among a very few, select criteria. I also was never granted a magic wand, let alone fairy dust, to fabricate the accommodations and assistance for people who have the misfortune of getting sick, hurt, or old in this country. It may well be better here than in a lot of places in the world, but most people are bitterly disappointed, especially those who have long believed in our great country (perhaps even fought for it), when they learn how little help there really is, and just how desperate life can really get.

Now, this is not a cheerful message, I realize, but then, this has not been a cheerful sort of week–or month. It seems that something has happened, whether that is the flu, or the continuation of economic stress, or simply an aging population. But people I saw years ago keep returning, sometimes in far worse condition than they were awhile back.

That said, it seems that professionals I know are pretty aware of many of the programs and services that are available. It is great that waivers and services that were once a semi-secret now pop immediately into the minds of discharge planners and social workers and nurses and counselors of all sorts. Once in a while, I can run through the possibilities and tell someone something new–or I can help make the connections once a person transitions from one setting to another. But once–or twice–or three times–in a while, I meet individuals who have my name on a long, long list of “try-here” resources. Sometimes they have been told that I can work magic, find housing, or psychiatric care, or transportation out of the normal area boundaries.

I am no magician. I am no saint. I try, I know my stuff, but I also cannot lie, defer hope to the next person when I know full well that you and your family are in serious trouble if you are 53 years old, have a demanding job and a spouse who has not worked in ten years, two kids in college and a mortgage–and have a stroke.

Truth is, I never want to tell a person how amazingly limited the options really are in this situation, but I do tell.  Often.

I do not want to tell a person that even though he has lost his entire life savings and home, he still has too much money to get help. I do not want to tell someone that it is a shame she is only 58, because if she were 60, she could get that help, that waiver, that thing that would change everything. But I do tell. I tell the truth.

We have an enormous responsibility when put in the position of providing assistance to people in crises. We want to help, always, I know. But I wonder, more, if at a certain point, the responsibility does not shift in each among us professionals, from the stage of vainly digging for exceptions to the rule, to pushing harder to challenge the rules–or moreover, the mindset behind the rules.

I look now at the enormous changes that we anticipate with a new age in healthcare, with a new term for our president, with new programs and initiatives–and I hope we can do more than talk about progress. We also face a time of cuts, further reductions in the spending on entitlements. We are getting older, dug into lifestyles that never envisioned a time that we would outgrow them. And in so many ways we have found comfort in the here and now, with utter disregard for the future, or for the here and now that we have so carefully hidden from everyday view.

I want to say that the level of caring is not good now, not fair–but changing. I want to feel that change, want to wake up and see a world where people are not driven to despair by the heartbreak of a nation that discards its sick and injured, and those who are neither sick nor injured, but simply different, who also are constantly fighting for a ramp, for a way in, for inclusion. It is hard to watch the bitter realities day after day, and not believe that our country can do better, can be better. I think of Martin Luther King today, as we all must, and find in his “I Have a Dream” speech these words:

“I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight…”

We could, you know. But until then, I refuse to pretend that things are better than they are. I hope; I dream, but the buck stops here.

Written by Only Anecdotal

21 Jan 2013 at 9:30pm


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I resolve. I solve. I wish I could solve the difficulties I see in the lives everywhere.

In particular, I am thinking this eve of 2013 of the many, many people who by some stroke of bad luck are seen as “less worthy” of entitlements, like life.

I am thinking of the non-elder community. Not to discount the very real needs of people over 60, but after four years and 275 visits to consumers, I have to say: age really is just a number. I am saddened enormously that on a policy level, we still remain separate, we aging and disability folks. In many respects, I think our communities are farther apart than ever right now.

I have thought about this over and over as I have worked in my own mind without these sorts of biases. In spite of my efforts to look at people as people first, and categories second, I remain frustrated by the “eligibility” requirements of programs that help people.

A few words of advice:

Do not acquire any other chronic, progressive disease that hits in your 40s or 50s. It will derail your entire life and leave you bankrupt just when your teenage kids and middle-aged spouse need you to be in prime earning power. If you have to get sick like this, wait until you are 60 and can get help more easily.

If you have to have a developmental disability, do your family  a favor and score low on your IQ test. Please. Otherwise, you will not qualify for the help you need, and will either exhaust your family or be left to figure out a sometimes cruel and confusing world on your own.

Do not have a mental illness. Just don’t. There is a reason that people who recover from mental illness call themselves survivors, and it has more to do with the “treatment” system than it does with the illness itself.

I know this all sounds quite cynical, and sadly enough, I could go on and on. It is difficult not to be pessimistic as we approach the many changes happening in the disability world right now. Over and over, we see younger people with disabilities all the more marginalized–and perhaps more tragically, fooled into thinking that they are truly included in the unified effort to streamline services and health care. I believed in these efforts, once, and want to think that understanding will still come.

But I see much more often that money changes hands behind closed doors, that those who do not understand the very human right of self-determination are left with the funds to reward those who are compliant, those who do not question, those who play nice…

I resolve to cause more trouble, to question more, to speak up, again. And again.

I resolve to tell these stories, to love more, to convince you to love more, too.


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31 Dec 2012 at 5:25pm


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The last week in the consumer trenches has felt like an exercise in unknotting strands of random advice, help, and procedures, trying to figure out just what has happened, and what is going on now.

A disabled woman is left stranded as her doting husband reverses roles from caregiver to care-receiver. The woman is alone, though not completely helpless, but she misses him so much–and vice versa–that life stops for each one of them when they are apart. In her house, I can only imagine all that he has actually been doing for such a long time, but finding trustworthy help in the home has been a more stressful process than going without it.

Another woman is telling me bits and pieces of difficulty not related to the major surgery that has made the bits and pieces now incredibly relevant. As I listen to her, and she tells her story again, I begin to wonder why this surgery happened in the first place–it was preventative, and not expected to significantly lengthen or improve her life. Or if she really did need some sort of intervention, why this particular procedure? She tells me that a year ago she was mowing her own lawn, and now says that she would never have gone to the hospital that fateful day if she had known. She was told at the time that there was no choice, and no time to wait. But there always is a choice; an informed one would have been fair to her.

Another person is trying to negotiate a balance between mental health systems and substance abuse systems, with very little success. One disregards the other–a familiar story. Insurance is denied for the things that might help the most, and I am left wondering how on earth a fairly young person–post-IDEA–could have made it through the school system without anyone doing something. And yet, he was passing his classes; he was not violently disruptive. It happens all the time.

In all of these situations, the people involved–consumer, client, patient–were all very well aware of how they felt, and what they believed they needed and wanted. In none of these situations were they able to get it, and to be honest, none was doing very well.

Many people have told me that getting older is difficult because so many people you love die, because your body refuses at times to cooperate, because the rest of the world stops listening. I am fairly sure this is all true, but I think it is true of many people who find themselves in the vulnerable situation of illness, disability, or actually, any sort of vulnerability. We will all find ourselves in these situations at some point of our lives.

I have found myself more and more frustrated at the level of advocacy we expect people to exercise when they are in these vulnerable situations–an entire education on Healthcare 101, or Social Services 101… no, make that 501. It is not enough to understand the mere basics. But for what? I find people everyday who have services, but no sense of why they come or who sends them–and the worst situation: what happened, when things fall apart. I have spent hours during the last week on the phone with various pieces of puzzles in people’s lives–trying to get some sort of response, but often to no avail. It is not even enough to be vigilant, sometimes. But without that vigilance, most people end up in far worse predicaments. What a shame that we cannot be clear and try to do our best to make sure people are heard and get what they need, what they are paying for.

In the end, assumptions and best practices may result in confusion, accidents, overdoses, high anxiety, death. Tragedy, preventable if for want of better customer service, and more honest, unbiased, balanced communication.



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1 Oct 2012 at 9:46pm

French Literature

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When asked about my background, I can note the fellowship in disability policy, or the work toward my master’s in public administration, the grant writing, and the years of personal and professional experience in working with the bureaucracy that surrounds special education and health care. Or I can mention that my intended profession was to write, and to study, teach, and research literature. Yes, I did that, and at times it seems like a lifetime away. I finished my master’s in French literature and then moved to comparative literature for my doctorate. I wrote, and was moving up in the literary world, and things were going quite well until… Well, this is the story of so many people who either become sick or disabled themselves, or have family members who do. Truth be told, it is a lifetime away. In my case, it was my child who needed me more than any scholarly attempts at deciphering Borges, so whether I knew it or not, my course was set from that time on. Juggling only works for a while when the situation is serious, when appointments and anxiety set a whole new trajectory for our lives.

In my case, we were lucky in the early days, with enough financial resources to support my not working, the medical costs, the transportation costs, the human costs of fighting to get what my child needed. But things could only continue this way for a while. Add a child, or two, or three, add a diagnosis, and a divorce, and the financial consequences of the time spent fighting rather than working, I know the challenges, the loss of dignity waiting in a welfare line (even if they no longer call it that). I know what it feels like to be so close to the edge. And I also know that I am incredibly lucky not to have fallen off.

The last week seemed an exercise in remembering the lessons I learned myself, as I met with family after family on the brink. One man told me that he had been crying himself to sleep in the hospital every night. His own disability had been difficult, but when his wife was hurt and unable to work, the challenges grew: the battles with her employer, the application to Social Security, the continued expenses–previously sustainable… And a way of life that the family had worked hard to achieve was quickly disappearing.

This was only one family, in the beginning stages of such devastation, but I see them all the time. I wanted to tell the man that he is not alone, but I am not sure that the news of so many people being swallowed by financial ruin in the face of disability is a reassurance. I think of Victor Hugo, Jean Valjean appearing in my referrals not occasionally, but often. I have met people who confess to me that they have stolen food, or money to buy medication for a child. Some have gone to jail for it, and find themselves living in hotel rooms, seeking endlessly for help. But a simple background check usually makes both housing and employment nearly impossible to find. When I see situations like this, day after day after bleeding day, I can only respond to the question about my relevant education to say that French literature was entirely appropriate to prepare for this.

Truth is, I wish I had answers for the families I see. Sometimes I can find some resource that helps people, or can fight a little harder, know the person to call. And most of the time, the strength of human spirit amazes me. I can continue to build a community and to learn, but most of all, it is the human element in all of us, the stories, that have the most chance of affecting policy and change. I hope so.

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16 Jul 2012 at 7:18am


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Later this week, I have to go to a meeting to discuss a training module created on the topic of “consumer control”. Now, for those of us in the disability world, these words have powerful meaning: a tenet of independent living, of disability rights, of civil rights across the board, when you get right down to it. And yet, I am anticipating more attempts once more to water down the rhetoric, to emphasize the progress that has been made in “person-centered” service delivery, in “consumer-directed” service delivery, in shared decision making. And while these attempts to include the consumer/patient/client in the discussion about care and services are better than total exclusion of the person, they are still missing the point.

In my work, the number one complaint I hear from people when they refuse services that are available to them is that the services were somehow intrusive, inappropriate or judgmental. I hear that they are not what the person wanted or perhaps even needed, but that someone–a professional of some sort–convinced a person to accept help, or care–or it was just done for (to) them.

One person determining “what is best” for another person is not an exercise of equality in the least. In fact, as the person–or family in the case of a child–is seen as the receiver of something, rather than as the subject of a service-related relationship, the relationship is skewed from the start. Is it any wonder that people do not follow service plans when they are not the ones who are in charge of them?

Loss of control is perhaps the most frightening part about the aging process, and also within the world of illness and disability, if for different reasons. We seem to have a desire as a society to protect those who do not fit the stereotype of what we deem fit and strong. A number alone–a number of years–can determine whether a person is clumsy, or a fall risk. It can determine whether someone is categorically entitled to certain services, like meals on wheels. It seems to invite sudden permission to resort to diminutives when addressing a person whose name we do not know. And for people with disabilities, if the notion does not invite pity, it may well invite fear, as we avoid the issue of difference entirely simply by not considering access of all sorts, by not even entertaining the possibility of a wheelchair, or a seizure, or an inability to speak.

But we as professionals may well envision our perfect worlds for people. We may know the most effective treatments, and the best living conditions for a certain set of circumstances. And actually, we may have some great ideas based on the experience we have and the things we have seen. But always, always, our consumers are the best teachers we have. It is necessary not only to listen, but to relinquish the reins to them. We work not with the people we serve, but for them. Really. It matters that much. The medical care we give, the services we set up, everything we do should start and end with the same sort of relationship I would expect if I walked into an Apple store, and told the worker what I need my I-Pad to do for me. And we should deliver–and if we cannot, we should go back and figure out how to respond to the need we were unable to fulfill.

I talk to a lot of people who are very good at creating their own solutions that really do meet their needs. A man I met a few weeks ago was in a quandary when he needed a doctor’s signature to complete a transportation form. He had stopped seeing the doctor, because he had pooh-poohed the man’s choice of a treatment that was not what the doctor had recommended–even though that treatment had been effective in the end. A woman sat in a nursing home for months, complaining endlessly to whomever would listen, that she did not want to be there, that she wanted to go home. And yet, over and over she had been told that she was too weak, that she could not manage on her own, that she was not safe. This sort of prison must be the ultimate loss of control in our society. (Now she is home, safe.)

I had a dream not so long ago that prescriptions for medicationss were a thing of the past. All medicines were legal, and available, and we just took them if we thought we needed them, consulted with professionals if we thought we needed to. I know it sounds medieval, and reckless to some, but I wonder as the world becomes wilder, as we self-publish and grow, if we cannot reinvent the sort of control we have as individuals to determine our own needs, if we cannot let go of our own (perhaps unconscious) desire to “help” others (which is another word for controlling them), if we cannot see fit to trust–truly–in the ability of those whose abilities are different from our own to make decisions about their own lives.


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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?


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.

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.