Archive for May 2012
Why War Is Hell
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?
Are we smart enough?
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.
On Waivers
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.
Qui est “in”, qui est “out”?
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?
Not Ready for Prime Time?
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.
Only Anecdotal 