Archive for the ‘hospitals’ Category
Marathon
As the helicopters and police cheers roads gathered here In Framinghaam, it was thrilling, as it always is, to watch the racers speed past.
This year, of course, is different. It will never be the same. .
A life can be so radically altered in a heartbeat. We all know it, and yet we do not. We do not want to believe that evil is behind it, certainly. And yet, sometimes it is.
I think now about the families, the wounded, those who saw too much, those who lost so much. Strength, and love… We need this, need it so much in this world.
My Inspiration
My mom died around midnight Saturday night.
She had been struggling for many years with a number of chronic conditions, all beginning with a diagnosis of rheumatoid arthritis in her forties. Over time, things became harder and harder, her lungs and heart weaker. She rallied forth, every time. She was strong, invincible I thought. But the cold she caught in a short-term rehabilitation unit was finally too much. An infection developed, and within two days, her kidneys failed. There were no heroic efforts to intubate or dialyze–my mom knew a long time ago that she never wanted those things. She talked to us for as long as she could, until she faded, and never awoke. I will always laugh as I think that she said she was sorry she would miss Downton Abbey this week.
My mom died an ideal death. The one blessing of losing my dad in 1985 was that it gave us plenty of time as a family to discuss death, and not to fear it. My dad had lung cancer, and was sentenced to certain death over three months before he actually died. In that time, we as a family spent our time in an endless cycle of work, dinner, hospital, home. Repeat. Several panics before the end–this is it–he pulled through, only to writhe in pain. I remember even as a twenty year old thinking that the fears of morphine addiction seemed ill-placed, as did the very arrogance that surgery on a dying man is a good idea. As I recall, we were never given a choice of what should happen, and if we were, we were probably still seduced by the notion of medical miracles. The last words I remember hearing from my dad are “It’s all right. It will be over soon.” He must have seen my frightened face, my anguish at the intensity of his suffering. I avoided all doctors and hospitals as much as possible–for years–until my own children were born.
I have spent an enormous amount of time in hospitals since then, in all sorts of situations. I have to say, I am most often impressed by the care and knowledge I see, and my mom had remarkably good care at the Cardiac Intensive Care Unit of St. Luke’s Hospital in Kansas City.
If the acute care of her final days was beyond excellent, the long-term care options preceding that time were filled with anxiety and frustration. Too little money to afford assisted living or private home care, she pieced things together, accepted mediocre services until they became more cumbersome to allow than to refuse. (The one exception was the man she found to drive her on errands. His name is Diego, and he could not have been kinder.) My mom worried, a lot, and she became sicker.
I was frustrated, because I am supposed to know my way around this. But then again, looking at the fantastic facilities where my mom died, considering the costs of those heroic efforts that many people do try, thinking of the enormous blessing that my mom’s Medicare and supplemental insurance will pay for it all… I imagine we can create long-term care services of similar quality. As we see the shift in the years to come from the sexy world of specialties and surgeries to primary care and prevention, we will feel the difference in our lives, all of our lives. We have to.
Aco Ico
This week, there have been a number of discussions around the penalties hospitals are now receiving for readmitting patients with certain conditions, and Medicare, within thirty days.
As I have stated before, I think this is a misguided practice, throwing gasoline–rather than water–on a fire that is already blazing. But of course, if we ignore the source of the fire to begin with, it looks as though we are all doing something!
Enter the Integrated Care Organizations and Accountable Care Organizations. Note the word care in these titles, for the focus–at least to me–is on the concept of integrated care, and efforts to coordinate services for people with chronic health conditions. This is most likely the key to preventing those readmissions, but of course, coordination is only possible when there is something there to coordinate.
I will spare you readers the rant this week over the lack of long-term care services. I suppose I could go on forever about that, even as I know the lack (and efforts to fill it) are on the radar of many others, as well.
The past week in the trenches was particularly hard. I am still a bit shaken at week’s end at the tragedies that come to my door every single week. Most of my referrals come from the hospitals, where I do not know how employees in the emergency departments and social work areas do not become completely overwhelmed with the sheer injustice of it all–they see it, in all the gruesome detail, daily. And I have the choice to say no, to walk away from situations that I find dangerous or inappropriate, never make that ethical choice to let go of life or to save it. Nonetheless, I remain shocked when I let myself, that this “greatest healthcare system in the world” bankrupts its customers–or our conception of healthcare’s role within government does.
I suppose that makes my views fairly clear. But if not, there is still time for discussion. Tomorrow I will be at the Massachusetts Home Care conference, hearing about ICOs and where we all may be headed in our thoughts around long-term care.
And after that, the Statewide Independent Living Council conference… Much to learn, much to ponder. More next Monday.
Going Home
As hospitals edge even closer to dreaded October, when they will be penalized for thirty-day readmissions, I wonder why we are placing blame in the wrong place.
I know I sound like the overplayed record, which is indeed a sad place to be considering that no one plays LPs anymore (or do they?). But people who leave hospitals without sufficient supports at home will return, quickly, to hospitals for care. It will not surprise me when we see in the first reports on this policy that the hospitals who care for the sickest and the poorest will be those with the highest penalties.
Now, the problem that we continue to ignore is that people (including caregivers themselves) get sick, and people get old, and people at some points in their lives are either glad that they planned for it, or sorry that they did not. But of course, there are always situations when planning is impossible, and chronic poverty would certainly be among them, but accidents happen, as well. And even very good planning can be insufficient for those facing a long-term diagnosis like multiple sclerosis.
Every time I drive past new housing that features the classic staircase leading to a narrow front door, I realize how much our nation is in denial of this issue. I think this particularly in lovely communities without public transportation, or even paratransit. It is really worse than not planning for aging in place, or for sickness in general; in many ways we live in communities that were planned with a vision of independence, privacy, and all the things that seem so desirable, but in the long run often work against our very nature as social beings. No, we have not planned for disability, or for the necessity of frequent hospitalizations, and we continue not to plan for it, not only in terms of health care (including long-term care, but in terms of our entire communities.
In recent months I have met with health care professionals from Denmark and France. When attempting to describe my job, I have been continually amazed at their confusion as I try to describe my role, which involves trying to figure out which slot may work for given people to find funding for services. Both of these western European professionals told me that it is not a question, regardless of income, whether people will receive support (state subsidized support) at home, but that the difficulty comes in coordinating schedules, and actual logistics of carrying out the plans. In other words, there are supports, and enough of them, and people who need them do not have to jump through eligibility hoops of the many variety we have here. What a concept!
But it is interesting also to think that in these imperfect, often inaccessible foreign communities, there must also be some acceptance of multi-age communities, universal design, and death.
This is not to say that there are no choices for in-home supports (or universal design–so much innovation!) in the United States, or that they do not exist. In fact, they do exist, abundantly, for those who can pay for them.
For people who do have supports, who have informal support at home, or can pay for personal care services, I do believe that STAAR or other post-hospitalization counseling programs may well help people avoid hospitalization.
But for those who cannot afford help, who return to isolated upstairs apartments, or to another sick spouse, or to dependent children, we will continue to find them, exhausted and sicker, back in hospital emergency rooms. It is not a matter of inadequate care in hospitals, so much as it is a call for help where we live.
It Won’t Happen to Me
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?
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 