Only Anecdotal

No numbers, just stories

Archive for the ‘hospitals’ Category

Marathon

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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.

Written by Only Anecdotal

15 Apr 2013 at 11:47pm

My Inspiration

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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.

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4 Feb 2013 at 5:26pm

Aco Ico

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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.

Written by Only Anecdotal

10 Sep 2012 at 7:40pm

Going Home

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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.

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20 Aug 2012 at 9:36pm

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

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?

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14 May 2012 at 4:17am