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Today I found out how a deer feels in the headlights of an oncoming car, frozen, seeing a ton of unthinking machinery advance with the purpose of its destruction in mind. Continuing on the delightful theme of my mother’s illness, having progressed to a ventilator and a dialysis machine I discovered an entire new level of how hospitals practice insurance rather than medicine.

First I received a call from the nursing home where we were holding a room by paying for it privately to the tune of $700 a day. They cheerfully informed me that they did dialysis OR ventilator but not both. I found on another blog a note written by a respiratory therapist saying the reason many dialysis centers did not take on ventilator patients was a liability issue. I called the nursing home and offered to sign a wavier of liability. In turn they countered that they could not release a nurse from the vent unit to travel with my mother. I countered with I’d hire a nurse from a visiting or other private nursing service for that purpose and pay out of pocket. They called the dialysis center who refused to have my mother enter as a patient as they did not do dialysis on ventilator patients. They want patients who are only sick enough to pay well but not too sick to cause any liability.

Then the hospital called and told me that they had a room for me in a place that does ventilator and dialysis. It was NYC or the Catskills. Neither are near and neither could be visited regularly. I forbid them to move my mother who has multiple other problems aside from the vent and the dialysis …but apparently is just stable enough to get her tossed out.

Next I get a call that since I refused the first available bed open all medicare benefits were now discontinued. So I started an appeal to medicare and my mother’s secondary insurance. Well the secondary insurance turned down the appeal within 30 minutes.

In a nursing home, my mother has to pay privately until she spends down her account for medicaid. So it can be the same with the hospital. So she is staying. Perhaps, indefinately. There is a gap to provide many services to our elderly and I think it is time that we just stand up and protest, that medicine is there to make our loved ones better, to help the entire family cope at a terrible time.

Sometimes when a deer is caught in the headlights the car smashes into them and makes a bloody mess. But once in a while, a driver will turn off his lights and the deer will leap gratefully away. To solve this, that is all I need, a blink of cooperation.

I really have to credit my friend Stef at work for pointing this out to me. But first, which statistic do you think is higher? Death by auto accident, you know bad weather, too much to drink, mechanical failure, bad driving, falling asleep at the wheel and at least a dozen more factors or death by sober medical practictioner with years of schooling and preparation for his trade. BZZZZZZZZZZZZZZZZZZZ (rude noise buzzer). Yep, the medical establishment kills more people than car accidents. Try this link on for size http://www.centerjd.org/private/mythbuster/MB_medical_malpractice.htm

Amazing isn’t it?

I still like to go back to the idea that a lot of this could be prevented if there was better data management. For instance, going back to my experiences as my mother’s health care proxy, when she was last admitted to St. Luke’s in Newburgh not only would they not give me any information because they didn’t have records in the ER (see HIPAA rant) but they gave her an antibiotic she has a known allergy to. Not only was this information with the transfer records from the nursing home, but on a special medical bracelet I had made for her that had more extensive medical information than usual. But I guess you need to hire people who can read for that to be useful.

One argument might be that perhaps the problem is too big. That there isn’t a way to handle this. But wouldn’t it be simple if each person carried with them, on their keychain perhaps, a little button of information????? It could carry basic medical information, when and why you were last hospitalized, any allergies and other important life saving data. I’m dreaming right?

No I’m not. Try this link out for size. http://www.maxim-ic.com/products/ibutton/ibuttons/index.cfm

I’m sure there are a dozen variants of this small data system. Even most people carry with them on vacation tiny data cards that can record hundreds of photographs in a square inch. The technology is out there in many forms.

And just think if there was “write only” for hospital records. No information vanishing, no mistakes being deleted at the first hint of a law suit. Ohhhhhhhhhhhhhhhhhhhhhhhhhhh. Geeeeee why didn’t I think of that. Paper records are so easy to mis-manage. Perhaps that is why our medical system is lagging so far behind in data management.

An update as of August. Everybody blogs. Even doctors blog. Doctors even blog about their medical errors. Take a look from the other side. http://redstatemoron.typepad.com/red_state_moron/2005/08/medical_narciss.html

If you want to read a little on how medical establishments might prevent MRSA try this http://www.consumersunion.org/campaigns/learn_more/000861indiv.html

http://www.centerjd.org/private/mythbuster/MB_medical_malpractice.htm”>

http://www.msnbc.msn.com/id/5536730/ “>Today my husband received some sad news from abroad about a dear friend, only 42 years old, who died of complications from her diabetes. He joked, darkly, on how they did it right over there, as she was dead from a heart attack and various other complications a few days after being admitted from the hospital.

Here in America with our incredible technology, we can keep people alive forever it seems. And even after they want to die, beg to die, we deny them because we can keep them alive. It smacks of an incredible arrogance, not that we can do this, but that we do this.

But then there are also the cases where even with this incredible technology, wealth, and highly educated staff mistake after mistake after mistake is made and swept under the rug. The recent HealthGrades study summarized in an article on MSNBC http://www.msnbc.msn.com/id/5536730/ reports 195,000 that is ONE HUNDRED AND NINETYFIVE THOUSAND US deaths PER YEAR were caused by easily preventable hospital errors. To quote directly “If the Centers for Disease Control and Prevention’s annual list of leading causes of death included medical errors, it would show up as number six, ahead of diabetes, pneumonia, Alzheimers disease and renal disease.” In another article, MSNBC reports a doctor is sued after 50 botched surgeries http://www.msnbc.msn.com/id/6945667/ kind of amazing that nobody noticed something was being done wrong after the first two or three. The National Center for Policy Analysis estimates that cost of these errors runs about 9.3 billion in extra charges each year http://www.ncpa.org/iss/hea/2003/pd100803c.html. We worry about medicaid costs and social security costs, but if not the costs of stupid mistakes. And this does not even begain to measure the costs of personal pain and suffering or the loss of a family member. But it seems no one gives a damn.

The health care industry has been slowly killing my mother through a series of errors and just lack of caring. They say one person is a tragedy. One thousand a statistic. Here we have a huge statistic but let’s blog a little about a tradgedy.

My mother entered the Westchester Medical Center in New York State for a simple test. One that used an iodine dye. She had previously known dye sensitivities. She walked into the hospital, simply with some angina and today is lying in a hospital two years later with septicemia, and pneumonia on a ventilator. My mother had the angiogram at Westchester Medical Center and soon developed a fever and rashes on her skin. The rashes turned to blisters and daily her doctor, Dr. Cohen of the cardiac cath lab, would come in, look at the worsening skin and go “OH that looks better”. She asked for a dermatologist and the nurse told her she didn’t need one. Let’s remember she had previously known iodine dye sensitivities. Finally one came and took a skin sample which was never processed. She had an IV by this point and a friend who was also an RN noticed it was compromised and it took 24 hours to get it changed. I should have just ripped it out myself. By the following Friday her kidneys failed, and her skin was peeling off in sheets and she was moved to the burn unit (allergic reaction to the dye) and she was not expected to live. Next she developed MRSA, drug resistant Staphylococcus aureus, possibly from that compromised IV and Clostridium dificile. She had a hard time breathing. Oh and by the way they diagnosed that she needed a quadruple bypass. This was all in November. By Christmas Eve she was moved to another floor, as her skin was growing back, still under treatment for Clostridium dificile which caused such pain in her gut that she begged me to die.
Well, mom could no long stand by herself. She was too weak and the hospital was chronically short staffed from budget cuts. So when a lone nurse tried to move her, because she could not find help and my mother’s arthritic spine had her in incredible pain from sitting in a chair in one position for so long, she dropped her on the floor. In her medical records, no such detail is provided, my mother simply fell. After this I complained to the New York State Department of Health and the Hospital Regulatory Agency JACHO. While I didn’t expect the DOH to find everything, I expect them to find SOMETHING. Six months later I received a letter back from them saying that they could find nothing wrong with the hospital and no wrong doing on the part of the staff. JACHO doesn’t share its information. The hospital patient relation people never solved anything for me, only tried to placate me and make things go away, rather than using my complaints to identify and resolve potentially dangerous problems. Its no wonder the HealthGrades study reports the new estimate on hospital deaths associated with errors has doubled. Its a crime. Even those supposed to regulate simply make the complaints go bye bye. Why not, its easier that way. And no one gets involved. I’ll skip the nursing home nightmare, but by June my mother had another heart attack and was rushed to Westchester Medical Center. Dr. Cohen showed up again and the look of shock on his face that my mother was still alive was criminal. He rushed her back out of the hospital to the nursing home without treating her saying..oh she is too weak and has so many allergies we don’t want to do anything. In short, go away and die. Let’s get you back to a minimal care facility where that is very likely to happen.

I contacted Columbia Presbyterian. Dr. Oz took my mother on and did surgery. He is a kind and wonderful man. Her recovery was not smooth and by December of 2004 mom was back in the hospital, her chest wound infected. She never came completely off the ventilator from the chest wound infection. If you see my previous posts on the HIPPA rant you will find she has been back in the hospital twice for pneumonia now. They fear the heart valves are infected. Somehow, this has all been a downward spiral, subjecting my mother to test after invasive test and painful time after painful time. This has caused a syndrome called critical care myopathy where her muscles have just quit working. In time, they say things can recover. But her protein levels are constantly low, as she is on a ventilator she is fed through a tube in her stomach, and her nutrition is low and the spiral down continues. I can only wonder, if she had not walked into the doors of Westchester Medical Center, if she would have a decent quality of life today. I blame her condition on medical errors and both the hospital and the New York State Department of Health that did nothing to prevent more errors from occurring and to treat her medically after the second heart attack and all of the errors. But in the end, no one cares, until they are under the knife or dying themselves because of these errors and then it is just too damn late.

Shrug your shoulders if you will, if something isn’t done, it is likely you will loose function and quality of life through medical error.

In an article in the New York Times http://www.nytimes.com entitled “Doctor’s Journal Says Computing is No Panacea” by Steve Lohr, a report on computer systems in hospitals is summarized.

http://query.nytimes.com/search/query?query=steve%20lohr&date_select=full&srchst=nyt

Major hospitals have found that computer systems are so poorly designed from a user standpoint that simple information, such as patient medications are scattered across 20 different pages. Reviews, which sing the praises of these systems have often been written by the developer of the system, rather than a user. It seems that a new hybrid technologist is needed. One that is part computer programmer, part medical expert and systems architect. I do wonder how many of these systems, in part or entirely, were designed by outsourced labor in countries unfamiliar with our culture or medical system.

I use a number of systems where I work, that were designed and programmed piecemeal, by individuals who are far from expert in the field. The systems are slow, user unfriendly, cumbersome, and seldom reflect much, if anything that we write in our paper reports. Aside froms statistics for program fund allocation, they really are useless.

The one thing that is irksome, is that medical establishment seems to have a smoothly running computerized billing system. Funny, but when they put a priority on something, they seem to be able to make it work.

July 5, 2005
This just in…record keeping could get better…

The e-Health Revolution

How a bipartisan bill from Hillary Clinton and Bill Frist could help jump-start a new kind of health-care reform

By BILL SAPORITO

Jun. 27, 2005

Once before in his entrepreneurial career, Glen Tullman was standing at the threshold when technology transformed an industry. In the ’90s, he helped figure out a system that allowed insurance claims to be recorded and processed on computers, not paper. It made him a bundle.

Now Tullman heads Allscripts Healthcare Solutions, which sells a product that lets doctors run a paperless medical practice–including booking appointments online and creating e-prescriptions and, most important, collecting X rays, lab results and medical histories in one database, accessible to physicians and patients. He thinks he’s on the doorstep of another transformation. “There is less penetration of information technology in health care than any other major industry,” says Tullman. “Someone has said the advent of electronic health records will be as significant as the discovery of penicillin.”

It’s medicine that the health-care system needs desperately. Backed by the Bush Administration, prodded by employers and under pressure to contain costs and improve service, the medical community is finally–and rapidly–plugging into the new world of electronic health records, in which your personal health information shows up wherever you do–at your doctor’s office, the emergency room, the MRI machine, even your home. “Resistance is at an all-time low,” says Neal Patterson, CEO of Cerner, an e-health company based in Kansas City, Mo. Cerner and Allscripts are racking up quarter after quarter of double-digit sales growth.

Underscoring the new urgency to shift to e-health was the joint press conference held in Washington last week by Senators Hillary Clinton and Bill Frist, two potential presidential candidates who otherwise rarely get near enough to pass a communicable disease. They’ve got together, however, to introduce legislation that would provide seed money for local health networks and eliminate the biggest hurdle to beaming medical records to where they are needed: the lack of interoperability among the myriad systems now in use. Medical record keeping in the U.S. is in the “Dark Ages,” Clinton complained. “We need to have the information easily accessible.”

The U.S. government is leading this charge into the medical information age–robustly and, by most accounts, effectively–because it pays 46% of the nation’s medical bills. Dr. Mark McClellan, former head of the FDA and now director of the Centers for Medicare and Medicaid Services, is making paperless medicine mandatory for physicians who want to participate in the agency’s potentially remunerative pay-for-performance scheme. The aim, sensibly enough, is to pay doctors for keeping their patients healthy, as opposed to the current fee-for-service basis that simply rewards patient throughput. A priority for McClellan is to improve the treatment of diabetes and other chronic diseases, which absorb a disproportionate amount of health-care dollars. That requires better data collection–uploading and monitoring information from glucose meters, for instance–and more communication with patients.

“McClellan has made it clear. They are not going to pay the same whether you leave horizontal or vertical,” says Dr. Don Rucker, head medical officer of Siemens Medical Solutions, one of a handful of large corporations, including IBM and General Electric, that are betting billions on the market for health-information technology.

Driving all this are some frightening statistics. The U.S. is No. 1 in the world in terms of health-care expenditures–a total of $1.8 trillion last year and rising at a rate more than twice as fast as our incomes–yet it ranked no better than 16th in a study of 22 industrialized countries in what medical professionals call outcomes. That’s in part because so much of the care delivered is unnecessary–as much as one-third, according to a Dartmouth study–and in part because of the inefficiency of a system in which tens of thousands of patients die each year as a result of medical errors.

“We have to do this; there is no other choice,” says Dr. Alan Wasserman, president of Medical Faculty Associates (MFA), a 270-doctor practice affiliated with George Washington University Hospital in Washington that happens to treat many members of Congress. MFA recently converted to a system made by Allscripts called TouchWorks. Before the conversion, the practice employed 23 people whose sole function was to collect, store and maintain paper files that filled several rooms.

TouchWorks is vastly more efficient at such mundane medical tasks as booking appointments and renewing prescriptions. About 90% of renewals can be processed within an hour and, because doctors’ handwriting has been eliminated, with far greater accuracy. There are enhancements in the back office too. Because automation improves documentation, the group’s “lag charges”–the cash tied up in the fee-collection process–have dropped to $1.5 million from $2 million. MFA gets paid in 63 days on average, as opposed to 102 days before TouchWorks.

At the heart of the TouchWorks system is its “tasking engine,” a piece of software modeled after physicians’ standard 10-step diagnostic approach. Test results from outside labs pop up on the doctor’s screen, allowing him or her to plot, say, cholesterol levels over time and present the information to the patient. If a physician writes a script, the system will flag possible interactions with other drugs the patient is taking or question dosing levels that are out of the norm.

Automation has also created what Dr. Ryan Bosch, who directed MFA’s TouchWorks project, calls stickier patients, borrowing an Internet measure of loyalty. “I spend less time gathering information and more time being proactive,” he says. “Delivering good-quality health care is about a relationship.”

It’s not surprising that a big urban practice such as Bosch’s would get wired. Most health care in the U.S., however, is delivered by small practices with fewer than 10 doctors, and these physicians don’t yet see any payoff. That’s because so far there is none. The cost is high, about $10,000 to $12,000 per doctor, and most of the benefits accrue to other players in the system, such as hospitals, employers and insurers. Doctors in small practices, many experts believe, won’t link up unless their patients demand it. At least that’s the assumption behind a company called Medem, which introduced a website in May called iHealthRecord.com The site lets you store all your family’s medical information–prescriptions, allergies, health histories, etc.–and share them with physicians, as long as the doctors are on the system. You can also download vital information onto a smart card to carry with you. The software is free; Medem charges doctors who get the benefit of the record keeping. Linked to insurers, these so-called personal- health-record systems could also pave the way for “mouse calls,” arrangements by which doctors can consult patients over the Net for a fee. “It’s so much better than our main competition,” says Medem CEO Ed Fotsch, referring to the data-collection device still used by the vast majority of doctors: the clipboard.

There are risks involved in computerizing anything, of course. Privacy advocates are especially concerned that once patient records are online, it will be that much easier for sensitive information to fall into the hands of, say, insurance companies or potential employers. “It’s not about being scared of technology; it’s about the appropriate safeguards,” says Marc Rotenberg, executive director of the Electronic Privacy Information Center. To Rotenberg, the push to automate is running way ahead of the legal protections. Even Newt Gingrich, a longtime champion of health-care reform, sees the need for updated legislation to protect medical privacy as technology evolves. But, he adds, it’s important to keep the relative risks in perspective. Should you get into a car wreck, he says, “if you’re an absolute privacy addict you can always say, ‘I’d rather die.’” Identity, in fact, could be a far bigger issue than security, given the vast number of Americans with common names such as Smith, Sanchez and Lee.

The growth of regional health information organizations (RHIOs) is another step at dispelling the Big Brother scare. Although only a few RHIOs are operating, some 500 locally controlled information networks are being built, and the Clinton-Frist bill would put money on the table to help get more of them up and running. In New York’s Hudson Valley, the Taconic Health Information Network and Community serves 600,000 patients along with area doctors, hospitals, labs, pharmacies, insurers, employers and consumers. If a resident makes an emergency-room visit on a Saturday, the ER doc can pull the patient’s records from his personal physician.

The bottom line is that better health care may not happen in the U.S. without better health-care information technology. Sooner or later all of us will probably be carrying around our medical history in a key-ring device or an ATM-type card or maybe even a surgically implanted chip. The benefits could be extraordinary. IBM sees opportunities to apply massive computing power to help doctors make diagnoses and treatment decisions. New standard practices could be communicated to doctors within months rather than 15 years, the current lag between discovery and practice. Pharmaceutical companies with access to anonymous health data could improve and speed up drug development. There may even be a buck or two in it for consumers from what has been called information liquidity: If you want access to my data, pay me. Best of all, we could finally throw away those damned clipboards.

I was musing over my HIPPA adventures of the past 48 hours, when my thoughts turned to yesterday’s mail. In it, I received from my HMO a newsletter, that they signed me up for, on “Managing YourAsthma”. So let me get this straight, if I have a medical condition, they can write and distribute through the mail, newsletters, letting secretaries and others know of my medical condition. These are people not involved in my direct health care. So, newsletters, advertisement OK. Keeping patients and patients families as ill informed as possible so hospitals can cover their butts and continue their astronomically high death and injury rate by provider error is OK. Having as many informed eyes as possible (read informed family members and friends of a patient during a hospital stay) would alert medical providers to potential errors, need for medical attention and so forth would probably reduce the high error rate and improve care. But, for our own protection (cough) we have HIPPA. Right. Yeah. I’m still mad.

Health Care Administrator Attempts to Comfort and Smile

My next project will be to write to every congressman, legistlator and politician that I can. My mother, after a long ongoing illness is in the hospital again. I am her health care proxy and next of kin. I call, ” Can you tell me why she has been admitted?”
” No HIPPA.”
“But you saw me just a week ago.”
“We can’t release information over the phone.”
“My health care proxy is in her file”
“That didn’t come with her from the nursing home”
“But…”

“HIPPA”

HIPPO Turds.

I had just gone over my mother’s file with the nursing supervisor that afternoon. All sorts of medical details. I had to yell and scream at her to get an update (this afternoon she knew I was the health care proxy). My mother had a fever of 101.1 F. Wow. I could see them being reluctant to tell me my mother had picked up a sexually transmitted disease while in the nursing home, but just a fever??? Her case has been long and complicated and I have used up all my sick leave, family medical emergency leave and so forth. So there is a point where you need to start managing things from the phone. You need to know - is this a crisis or not.

This morning I tried to get was she stable, critical etc out of them. No go. I could understand if they didn’t want to release so many mg/L of some metabolite, but stable vs critical…? Come ON! I called the hospital administrator’s office and left a voice mail. It’s hours later and no answer. I called the covering physician. No answer. I left a message for her. No call back. My mom has been ill for over a year and a half and I have taken all sorts of time off to be with her. But I now have to manage my time and really only take time off for major crisises.

My generation has been labeled the service generation, the first generation to be caught between taking care of children and elderly parents who are living longer than ever before. Medical advances allow them to live longer and with more complicated medical problems (read costly) than in the past. This may not be a good thing, for although life may be extended, the quality is diminished and it is at great emotional and financial cost to the family.

Ack…I need a vacation……….whineeeeeeeeeee.