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Several years ago I started PAPER CHARTS for my entire family. My charts look almost exactly like the paper charts that every medical facility had BEFORE they went digital. I use 14 point stock manilla folders with fasteners and a two hole punch. I have color-coded sections for labs, x-rays, lists of medications, physicals, progress notes. I bring the chart with me to their medical appointments and ER visits. I keep it safe in my file cabinet. I STRONGLY URGE everyone to use this system. I get print outs from every medical visit and when I get home, I two- hole punch and fasten it inside my folders.
I work for a medical records copy company.
I process requests for medical records not only for continued care but for litigation, work comp, and Insurance claims.
Even the sites that have the same electronic medical records are different.
To find records they must be categorized correctly otherwise an initiated search will not see them. Records from outside the site can be labelled in a bewildering number of ways making them difficult to see.
Today I was accessing a paper chart that was scanned into EMR.
The person who had scanned the chart in had used the date of the scan instead of the date of each record that had been scanned making one open each pdf file to ascertain
what it was. I cannot image the frustration MDs must feel.
CollectiveMedical.com is the largest U.S. care collaboration network, they connect disparate systems across the care continuum. Collective share’s pertinent health information with care team members in real-time at the point-of-care. All health care institutions need to connect to their network.
i’m a primary care doctor in marin county, california. i’ve been using touchworks by allscripts (one fo the biggesst EHRs in the country) for over a decade. tho’ it has a lot of “features,” when it comes to getting information into or out of it, there are issues.
for example, a new patient may have a USB drive containing important records. i’ve been told the only way to get those into our system is to PRINT EACH PAGE AND SCAN IT IN!! (i am not making this up).
if i have a patient who tells me they returned from a vacation in, say bora-bora, and i read a month or so later that there’s been an outbreak of a disease there, it’s IMPOSSIBLE to search the text of my note (i dictate notes into dragon dictate with the patient there and give them a copy when they leave) that mentions details like this. despite the note being just text, the non-relational flat-field proprietary database that i’m told allscripts uses makes this impossible.
i’ve been using computers since 1965. when i took fortran 4 in undergrad. i know what they should be able to do, but they can’t. i’d be willing to share my ideas, but am pessimistic anything will change. until things get straightened out, ask your doctor for copies of everything (on paper) and hold on to them.
I have spent the last five years of my life building a solution to this problem; the middleware, the data highway and the healthcare commerce hub
between EHRs, patients and all their care providers. It is called AZOVA.
Timihealth is working with medical organizations to place their medical records on the blockchain, making them available and secure for everyone. Please look into it.
In the past year, I’ve been involved in a struggle with the military to obtain medical records for my husband, who was admitted to a hospital for several problems. He no longer had a paper copy of them, and according to anyone I speak to…they simply don’t exist. The first visit, we were sent home with blank discharge papers. No instructions for follow up care, no record of received treatment.
Since then, I have been keeping my own paper records, but it becomes increasingly difficult to keep track of what is pertinent information, and what is to be discarded as temporary or unrelated to other issues. With every visit, you add a page or two, never really knowing if it’s going to be useful, insisting on being given copies of discharge and treatment records. I find myself relying upon a family member who is a nurse to vet the papers for me, but even then I’m afraid to throw the rest out, I just don’t carry them with me.
I connect with Leah, but also one of the other posters, I find myself feeling overwhelmed. Often I only get to speak to a doctor for two or three minutes, all other communication being relayed to me by nurses, many I’m seeing for the first time, and they can’t answer my questions or address concerns, most promising to contact the doctor and get back to me, sometimes following through, sometimes not.
A compatible system would not be a magic pill, but it could only be a step in the right direction.
Today I drove into work with tears of memories of my mom in which will be 2 years she has been gone. Then I stumbled on this article at work while getting online. I understand some of what you wrote about. I realized early on with my mom’s doctor visits and many hospital visits I would have to be her advocate. Although my mom was pretty good about voicing how she felt… it was always a feat to make sure medical people were following through. What the medical people didn’t know was I was losing confidence in our medical system and them. I have to admit I came across medical people who made effort to call me back and try to remain consistent with my mom’s care. I did try to give the medical people the benefit of the doubt. It wasn’t in my heart to be a hard nose advocate and not even in my personality but I knew it was what I needed to do. As for medical records, my sister and I would learn of knew things we were not informed of or had been told in passing in which we had no idea the seriousness. In some ways, I felt I failed her as her care became overwhelming. I had to learn to do my best and trust God. I can go on but I understand some of what was said in your article and thank you for putting it out there.
As a patient who has recently moved from public care to the Veterans Administration system and have witnessed this first hand. My mental health has suffered and I have ended up in BOTH the VA AND Private emergency rooms. I 5hink I am a smarter than average man and I still had a medication reaction that resulted in a my passing out.
The VA system dispensed both drugs and while I get 2 or more pages of information with each drug the “system” allowed both drugs to pass into my hands without even a verbal warning.
Good Gawd, healthcare in the USA is a nightmare.
I was almost killed once in hospital due to a large dose of a med I’m allergic to and which was noted in my medical records, clearly, at the time.
Just one example. Many others have endured worse, when there’s absolutely no acceptable reason or excuse for it, discounting greed and a poor healthcare system which has run amok, over the past couple of decades.
And it isn’t just healthcare. Look at almost any industry in our Nation and you will find that it’s all gone crazy, lacking any honor, integrity, accountability and beyond caring that it lacks these essential traits.
Sick , from youngest to oldest, are simply fodder to fuel the machine. The machine that runs America. The almighty dollar. Everything else be damned. It’s absurd and it’s tragic, but it’s also here to stay, I believe. Insurance companies do not care one whet when an insured alerts the insurer to the fact that they were billed for services which they never received and further, can prove it! Why? Because it all boils down to a lack of regulation and sweet deals wherein insurers are not about to object to a charge, legit or not. Never mind the lack of legislation to address most of these easily addressable issues which lead to preventable pain, suffering, permanent injury and death. It’s money, people and that’s all it’s ever going to be.
I mean, who wants to see a doctor or nurse with whom they cannot communicate, because that professional does not have reasonable command of the English language. THAT alone, can be a contributor to misunderstanding and resulting serious medical mistakes. What kind of person who considers themselves a NURSE, fails to review a patients allergy list, before administering a potentially lethal drug, due to an allergy to it??? And where was the doc’s head at the time he/she prescribed the medication? Amazing!
Doctors often can be jerks. They do not like to be questioned about much of anything and have no qualms about showing their displeasure when they are. Have we not seen so many examples recounted here. where if the patient, or his/her advocate/caretaker had not spoken up, consequences could have been deadly and in some cases, actually were?
Yes, humans are fallable, but there’s no excuse for dereliction of duties. In failing to read what is before you and taking precautions accordingly. Behaving as if you actually know what your responsibilities ARE! Concerning life and death, these healthcare people should be held to a higher standard and there was a time when they were. Today, it’s a hide the evidence scenario, pass the buck and business as usual. It’s not only disturbing, it’s criminal when so many can create so much harm, when their chosen field demands anything BUT causing harm. And get away with it, day after day. AND be supported by adjunct industires while they often do their worst. Money is all. Peoples’ health and lives are merely a cog in the wheel of greed.
Medicare is such a shambles, it’s indescribable. Medicaid is even worst if a level of worse is possible! What are people supposed to do? Not much we can do in reality. When we’re mere fodder for the machine, our options are sorely limited.
Be diligent and be firm as an advocate for a friend or loved one in hospital or any other medical care setting. Don’t be put off by rude attitudes. Don’t be told NO, when you absolutely KNOW you’re right to be questioning/discussing or even demanding. Personnel are being paid for a SERVICE and you have every right to demand that service be diligent, responsible and every right to be heard. THAT will definitely end up in the medical record, (LOL) but don’t let it concern you, because when it comes to your own or your loved ones care, it truly is up to YOU these days. More so than ever before. Make notes of with whom you spoke and when. Yes, take names! If it protects someone you care about, it’s an essential to do. If someone is negligently harmed, those notes can be everything in litigation, after the fact. However, the idea is to avoid litigation and get your loved one or yourself home, in one piece and well again and thriving. Write to your Congressperson and Senators. Call them. Go visit them. Promote reform.
At any and every opportunity, participate in lobbying Congress and the Senate to enact meaningful legislation to change the corruption and waste within our medical system, top to bottom, including health insurers. And to hold medical personnel accountable for negligence, laziness, poor training or whatever the case may be, in their harming anyone in their care We MUST have a system in place to protect us all and to remove from the healthcare system, any person, entity or group, which doesn’t follow mandated/legislated protocols. Only then can we enter a hospital or other care facility with the expectation of receiving adequate care, minus the warranted fears we often hold today, when undergoing medical care. Our medical records should ABSOLUTELY be available from any facility in the USA, to any other facility in the USA. Anytime. And most particularly, available to us, free of charge, to have in our possession should we travel.
Yes, there are some good docs out there and there are some good nurses out there as well. However, they are part of a dysfunctional, fractured system which hurts us all, financially, physically, emotionally and spiritually. It’s very difficult to “trust medical personnel to know what they’re doing” and that is a shame upon our society as a whole.
We’re all in this together. No one may assume they’re safe in a healthcare system that values itself and it’s profits more than it values the lives of those in its care. Broken is broken and fixed is fixed. May we one day all benefit in the knowledgel that our healthcare system has realized the latter!
Medical information is not kept confidential. My wife’s pregnancy news just about beat her home and she lived 40 miles away from the doctor’s office. NO One- knew, but that office, her and I. I can imagine the many gawking eyes when all records are instantly available from one source. Another first hand story, kids told by nurse, who to avoid intimate contact with, due to a V disease.
One floor battle-axe nurse threaten to rip up a doctor’s order because I wanted to see verification of product dye, before it was administered. (a doctor happened to walk by about then)
This stuff happens all the time in unfortunate work areas and work pools- it frustrating for those that are bright dedicated committed caregivers.
A moral test qualification should be first prerequisite to determine if professional will be honest, transparent, committed to best outcome even when bean counters and bosses are saying… just get’em gone, or insurance won’t pay that.
Record flow- it is not hard to copy and send with patient, or to new provider. Incompetence and/or apathy should be called for what it is. If a professionally trained facility cannot make available, or clinician cannot read and follow chart orders, it is inexcusable and unacceptable- should the training school be liable for graduating this person, or the licensing agency? It is simple, where the ball was dropped is where the liability lands. Honest mistakes happen, but, same’ol allowed selective-stupidity is inexcusable. It is a problem because it is allowed to be.
Also, just sign this patient privacy form, it protects your privacy, they say- read the thing carefully, because you just waved your constitutional guarantee of right to be free from unlawful search, if some agencies were to be so inclined to request records. “I have nothing to hide”, has nothing to do with your right to privacy, or the millions who have fallen to protect, what is relinquished by signature.
Centralization of medical records, will be inadequate- if the same people, and moral ineptness are in charge.
The AMA could have fixed this long ago by promoting penalty sufficient medical self-policing:. They seem to be more concerned with pharmaceutical enrichment through research.
This is a horrible, sad, all to common story. I am a retire RN, one who worked with both paper and electronic records. I do think it is possibly the best solution to empower and encourage and require people to have their own records. My father-in-law had been under VA care for 40 years after a brain abscess resulting from a fall off a truck a few days after D-Day. When he had several admissions in a short time, I saw his paper records—all 6 inches of them. My mother-in-law and I created a summary of his medical history to carry in our wallets for admissions, with dates and brief info about his major medical events. We did not include meds, as they changed often, but she kept a current list. It was very helpful the next times we were in the ER.
On another note, I understand the Japanese have medical books that the parents (mothers) take to each appointment. Sounds good to me, but the peds office I worked in was always trying to find immunization records for families who did not keep even that record. Unfortunately, some of those were stored in a barn across town, by the prior doctor who owned the practice.
Empower patients by Tokenizing PHI/PII (just like credit cards) using digital wallets.
Invoke full recourse (criminal and civil) for individuals involved in PHI/PII breaches. incarcerate or execute are on the table. Too bad for the Social Security Administration, and the Average Municipal Police Department performing background checks. A better mousetrap WILL be built.
1) EXPAND MEDICARE 2) CREaTE UNIVERSAL TRANSITION PROTOCOL IN PLAIN LANGUAGE
Stop telling nurses and doctors how long to be in a room or double the time. Proprietary systems do not work with each other.
I work with elders in the apt setting and the next step unless you are rich is a skn. We need more help in the home. Doctors must be able to listen and have time to read and nurses have excellent training. AN RN is usually a manager- not doing enough direct care.
When we decide to create a system that cares for people instead of systems that compete for the dollar on top of persons who can least defend themselves- we will save a lot of money. My family of origin was turmoiled by catastrophic heath problems and then an early death of the other parent. I have seen it all. Older people in general need to eat great meals with other people- give France a call- they at least know how to feed children. All the services are severely disjointed. Nobody has played the game well enough in this country to have what they need in illness or old age without help from others.
A colleague recently stated at a conference that EHR is now where word processing was in the 1980s.
But I do believe it is getting better….
p.s. I resonate and admire all the comments others have made — thank you:
* alexander galvin;
<3 this discussion, and sharing of the situation, multiple necessary facets to perceive.
Fern, which episode of the podcast?
“But what choice do we have?”
Live in small communities of < 250 persons.
Everybody KNOWS everybody.
Village doctors understand their community's history.
Hyper-mobility*, colonialism, and industrialization… supposedly create efficiency.
Certainly they solve many problems (e.g. vaccines for e.g. smallpox).
They also create many problems.
* (as a daily/yearly practice)
We (tribal mammals) have evolved so for millions of years.
Our records of human historical texts only go back ~10,000 (ten thousand) years.
Our species, homo sapiens sapiens, maybe evolved ~100,000 to ~300,000 (one to three hundred thousand) years ago.
All humans started between ~1,000,000 and ~4,000,000 (one to four million) years ago.
Our "modern history" is literally less than one percent (< 1%) of all of human existence…
… and even less of all social-tribe mammals.
Any surprise that we're poorly adapted, poorly evolved, for this type of socio-structural environment?
This article captured my attention because I saw the need also this past year for our health care system to have a site where any licensed doctor or nurse, hospital or other medical facility could access a patients record to find out any and all information in one place for that person. I believe that it would literally save lives and stop a lot of wasted time and procedures. Most of all it would help to see what pharmaceutical drugs were being prescribed to a patient by a specialist other than the primary care doctor, who doesn’t seem to have a clue as to who else or what else you’ve been exposed to since your last visit to him or her. Leah, in this article, was a smart and caring woman to take notes to try and keep up with the info on what her husband was being given. It’s very difficult though to keep track of it all. I hope and pray that our health care system will cut through all the red tape and make it mandatory that all the different hospital systems will have to go outside of their systems and enter the info that might save a persons life at another facility other than their own.
The limit on how quickly people can read and abstract critical information is being exceeded by these systems. It is, let’s say, “Pretty Big Data,” and it is hard to transmit because there is so much of it. Moreover, the thrust is for more written information, and not less of it. Every time a new system is designed for storing this kind information, every time a so-called “improvement,” is made in the data requirements, it inevitably extends the range of information to be provided. People can’t absorb it. Sometimes it’s bizarre. I recently underwent treatment at a large local hospital. Got an X-Ray, a CAT scan, another Cat Scan, a Biopsy (with a CAT scan), a PET Scan, a breath measurement, and on and on and . . . get this, in the process filled out a preliminary set of 8 pages concerning my health, need for an interpreter, etc., 9 times, all completely identical, identical information and check marks. If I’d been smart I would have Xeroxed it the first time and made 9 copies.
This dilemma calls for data entry, storage, bandwidth and clutters up any system. The signal to noise ratio is wrong. This amount of information cannot be transmitted among people in this way. We’ve known about information theory for 60 years. Humans cannot read faster than they read. And you cannot give them piles of information muddied by piles of reflection and misinformation and expect them to learn it in short order. It might be possible to have computers collate and analyze it for us, but such systems do not yet really exist.
My mother had COPD (emphysema) and congestive heart failure. The last 6 weeks of her life were spent in medical care: first in ICU for tachycardia for nine days, then to telemetry. After two days in telemetry they sent her to rehab. I repeat two days after nine days being catheterized and never getting out of bed, they sent her to rehab at the nursing facility. We argued with the hospital she wasn’t ready but they said it would cost us a lot of money to keep her there. In rehab she was to have two nurses assisting her to the bathroom. One day one nurse said to the other, “let’s see what she can do” and just watched her struggle without assisting her. She walked 100 feet the first day, and was not able to repeat that therapy. Too many errors to go into details, but she came to rehab the Friday before Labor Day that year. Sunday night, the night before labor day, there was NO ONE available to help her to the bathroom. There were only two people on the whole floor of many beds (60?). We asked one of the aides to come and she said she would come as quickly as possible but she had been on the floor for 16 hours without a break. Multiple support staff had “called in”. The next day they let her rest. I gave her a kiss goodbye to go back home 2 1/2 hours away, another one of my sisters would be in shortly. That sister came in saw my mother was very weak, asked them to read her oxygen. It was 72 and she was in tachycardia again. The head nurse said “oh she has COPD? she has congestive heart failure?” She had never read her chart at all. Back in ICU again, then again to telemetry for now many days. She was given a pacemaker because the meds would not regulate her heart rhythm. After that, they sent her not to rehab but to transition care. The oxygen tech was so pleased when she got her oxygen up to 98. Her type of COPD required it be kept no higher than 94 but it took multiple days of my mother hallucinating she was living back in Civil War times and knew Lincoln and another sister arguing before the tech finally realized my arguing sister knew what she was talking about. The hospitalist at rehab was the best, he went over every little bit with us in clear terms. She started to improve and actually called me to say she decided she wanted to recover and go home until the day a nurse left the room while mom was on the side of the bed nebulizing. She had a fall risk bracelet on and was not supposed to be left alone. So she fell off the bed and was so mad she broke a dish and cut her hand open. After that the will was gone. After a few days all 6 of us siblings agreed to her wishes to go home and die. She went off all meds and we arranged for hospice care to come at home. The night before she was to go home, my older brother and sister and I were in the room. They kindly let us stay. One of the night nurses apologized because “we had him” – meaning the other night nurse. At midnight, my mother looked me full in the face, sitting on the side of the bed while my brother supported her. Well, Ann, isn’t it time to take me home? Oh, Mom, just have a nice night’s rest and we’ll take you in the morning, I said. I dozed off on the spare bed. The night nurse came in and asked my brother if it was ok to give her morphine, and said it might repress her breathing. My brother nodded, but he was not the proxy. When I woke up she was in a coma. Never made it home. She died at 3pm. So so many failings of the health care “industry”, despite 6 of us watching over her in shifts for the whole time.
No choice? You have a choice. You’re the highest paid medical professionals in the world, with a nation that spends more on health care than any other. You certainly can improve this. You choose not to, because leaving it the way it is results in more money lining more pockets and more people having a sense of pathetic power by keeping a patient’s records from them, instead of letting them have their records as they do in India, as another poster stated below. There ARE choices. There ARE ways to improve. YOU choose NOT TO. And it doesn’t seem to matter to you who dies in the process.
I like the suggestion of James Auran, MD. Even better, through legislation (with teeth) REQUIRE that EHR systems providers and health care providers share information via the HL7 FHIR (Fast Healthcare Interoperability Resources) standard. The legislation should require that all of the patient’s healthcare information be provided to the patient at no cost to the patient, provided that the patient provides the necessary storage media (USB, cloud services, etc) and/or specify a trusted repository (such as that provided by Epic or someday perhaps Amazon, Alphabet, or Bank of America).
The whole selling point for EHR was easy access to all medical records by all healthcare providers. Now it serves no real purpose because each system is so proprietary. Many very experienced healthcare providers are penalized by private and government insurance plans because they do not use EHR. Many practioners have chosen early retirement because of this. When my late husband was in intensive care for 7 months, I watched a parade of various nurses and doctors visit my unconscious husband without ever consulting previous records. As an optometrist, I can vouch for how much easier it is to flip between pages of previous visits to compare than using EHR. Electronic Health Records limit the communication a healthcare provider can convey in a record. It is point and click, not personal in any way. If you need to make notes or document something out of the ordinary, it is difficult. Our healthcare system is very flawed; EHR compounds the problem rather than fix it.
God help us all. In this time of new medical marvels occuring almost daily, it is all for naught. Our chances of receiving and continuing to receive the proper treatments are compromised by poor communication…one person’s inability to communicate fully and properly with another regarding medical records and treatments. No wonder so many people die in hospitals and care facilities.
At age 75 (this year), I had my first (to my knowledge) and very prolonged A-fib attack and was in ER for over 11 hours. The afib was not responding to their meds meant to calm the heart. My husband, who has a medical background, had at my urging stepped out to get something to eat.
During that time, they decided to try a medication WHICH IS CLEARLY LISTED AMONG MY ALLERGY MEDS, and he was not there to tell them no.
Their system is all computerized and up to date. They SIMPLY DID NOT READ the available list of drugs to which I am allergic.
It did finally lower my heart rate, & I was put in a cardiac care unit, finally fell asleep, then was awakened by a furor of attendants applying paddles because my heart had stopped (“paused,” in their vernacular).
It’s so important to have full medical records, especially when traveling, but what can a patient do when the staff HAS ALL THE ALLERGIES LISTED, AND SIMPLY DOESN’T READ THEM?
Nurses don’t care. One nurse I met was creepy, more interested in financial rewards than patients.
The failure of the current EHR is by design. They announced how the data was supposed to improve healthcare, years ago. They were peddling expensive data systems, while at the same time limiting the collection of data to what they considered useful, mostly marketing information.
The healthcare industry mane no attempts to create a meaningful medical record, with the help of other industries, like pharma, who tend to profit better in the dark. Pharma did not want physicians, or anyone tracking pharma deaths in real time. The current stem was truncated by so many different interests. Physician did not want to leave paper trails, since it could potentially lead to liability. At the same time the intrusive collection of data, had people thinking that it was already there. Medicare as the largest insurer should have demanded better data, and medical records, unfortunately industry groups and their lobbyists, claimed that collecting the data was “government overreach.”
Industry bean counters, lawyers and profiteers know exactly how this missing and confusing EHR can be used for financial gain, and to obscure mistakes, and unnecessary procedures. They koew how to exploit this for profit.
The model now is that any time an under-insured person accesses healthcare, if their insurance does not pay enough, for what they need, can be turned away or postponed. This also applies to minorities, non gender binary people, and woman. Each time they see a physician at the same clinic, the clock starts. They start with a new slate every time. This way healthcare can be denied, and given to someone they deem more worthy, or billable.
This missing medial record has been particularly helpful for physician that refuse to acknowledge surgical mistakes, or unhelpful previous health interventions. If they don’t know about the previous record it is as if it never happened. Physicians are also subject to Gag Orders, so if a patient had an adverse event previously, it will not be discussed or acknowledged. No one keep track of the trauma they cause intentionally or the number of deaths.
The profit driven model did not see clear medical records as beneficial, while at the same time they ‘educated’ patients and shareholders that there was a data revolution. They were Gas Lighting us all. The only data they collected was the most minimal necessary for billing, they did not want anyone to be able to piece together their records. It could lead to criticism and liability, and for non profit providers, it could cut into their “excess” funds. There is even something claiming that patients have “Rights” to their medical records, but that is a lie, who would enforce that?
These Data Gaps are all by design, meant to obscure the actual records, and make it difficult to track mistakes, over charges, and duplicate procedures. Physicians won’t even refer to their intake questionnaire, filling hem out is busy work for patients, and gives them the false impression, there is something for the physician to refer to.
The Market Driven healthcare system has gotten too unwieldy and corrupt to even pretend the records mean anything. The industry clearly obstructed any attempt to standardize or connect these records. With no record they can provide whatever care they deem profitable, while picking patients with better reimbursement rates. The Data Gaps are even in the same system that generate the records. To avoid liability or accountability, they remove inconvenient records. This is pretty typical of post surgical adverse events. They will even remove surgical notes if there was anything that could lead to liability.
We are in Post Fact America, where corporate interests supersede our health. The system is flawed by design. American Healthcare is the most expensive and has worse outcomes, than any other developed nation. There is little meaningful regulation anymore, and nothing gets done without the profiteers input. They marketed expensive data systems to these healthcare providers, yet none allowed them to collect meaningful EHRs. Hospitals even advertised that they were going electronic, a meaningless public relations or advertising claim. Further proof is to just take a look at what Medicare is allowed to collect. Even the ACA had a provision for updating the records and creating an EHR , yet the industry refused to do it. They depend on keeping us all in the dark, for profitability.
I’m the caregiver for my husband, who is in the late, last stage of Parkinson’s. He broke his hip last fall and was flown to San Francisco from where we live, 300 miles away.
I found myself wondering if the rehab he’d been sent to south of S.F. was one of the ones you mention here. Despite clear instructions from the doctor, they mismanaged his Parkinson’s medications badly in the first two weeks he was there, despite my pleading with them. I finally had to call in the county ombudsman’s office to intervene — it was the only way I could get help. They were leaving him violently shaking and thrashing in bed while withholding his Parkinson’s medications when he needed them. Then they started overdosing him on his meds… He was finally sent home with a stage 4 pressure sore and missing his wedding ring.
The ombudsman’s office assured me that, compared to most of the other facilities around there, this was a good one. If that’s good, I dread to think what is considered bad.
My husband is now home in hospice care. It’s a nightmare.
I laughed out loud when I read this part:
“The American health care system is dynamic by design. Patients move from one hospital to another; from a hospital to a rehab facility; from the wards to the intensive care unit (ICU); from the hospital to a primary care setting. These transfers are inevitable, as a person’s health either improves or declines, or if that person simply desires a second opinion. In non-emergency situations, it’s somewhat of a medical free market. Patients have every right to take advantage of it.”
That’s a very precious interpretation of our health care system.
The reality? Patients move around because insurance controls the doctors we see. Sometimes the insurance drops doctors. Sometimes they give up jumping through hoops and stop working with our insurance companies. Sometimes we change jobs, and our new insurance doesn’t cover our old, trusted doctors. And sometimes work changes insurance companies, and again, we lose access to our old doctors.
If we keep going to a trusted doctor that in-network $40 visit turns into a $180 out-of-network visit.
Health insurance also questions every visit, every need, every problem. If it’s not big enough, or painful enough, or serious enough, they deny coverage. If a condition gets “good enough”, they refuse further treatments until the patient does poorly again. With my chronic health conditions (going on 9 years of treatment) I never get better because insurance refuses to pay once I’m no longer in severe pain or have some level of functionality.
Getting the person who makes the decision to deny my visits to talk to ME, the patient, the person being slowly killed by bureaucracy and greed is impossible. Literally impossible. It’s not allowed. My doctors have to jump through hoops. I have to call again and again, hoping to get a representative who has empathy and will tell me what I need to do. Sometimes the problem is literally a code – a different code will allow something to be approved. Sometimes the problem is that I reported my daily pain is 7 out of 10 – for further treatment, it has to be 8 or higher. Sometimes insurance says that they won’t approve treatment because there is no proof that it will help – how do I prove if something will help me or not if I can’t try it and see?
In short, our health care system is profoundly broken on multiple levels. It kills untold numbers of people every, single day. It’s not a medical free market that patients can take advantage of. It’s a medical nightmare that abuses and drains people when they’re already ill.
The way this patient was abused by the system doesn’t surprise me. The only that does is the assumption that any part of health care does anything good for the patients.
26 years ago, I brought home my twins. They had been born at 26 weeks and were hospitalized for 12 weeks. They came home on apnea monitors with instructions from the nurses at the unit, but a lot of information was missing. I am an RN with 2 other children, so I just guessed at what I needed to do, acting on what I knew they had been doing at the hospital. I quickly realized that they were having trouble keeping their temperatures at a normal level. I moved them into the living room by our wood stove. I slept on the couch, when I could sleep. By the second day home, one of the babies began having apnea issues. I called the Dr. office to be told that they had apnea monitors because the Dr. thought they might have apnea, so I should not be worried. I insisted that I bring them in to be examined. I got a friend to go with me, but had to switch to riding instead of driving when the baby stopped breathing. I got her to breath again very quickly, but she was breathing too slow. When I got her out of the car, she started crying and breathing normally. I insisted that she be readmitted. The Dr. thought she did not need to be but agreed to some blood work that showed extreme anemia, so she was admitted for a blood transfusion which she had needed 2 other times. By the time I got home, the hospital called and said she had a respiratory arrest at the hospital which was severe. She was stable at present but would need to stay awhile. She stayed for 2 more weeks. When she was discharged, the Dr. came in and said to follow the directions he had sent home the first time. Well, he had written 2 pages of information on the babies care that I never got. One thing on the list was to return them to the hospital if their body temperatures were not stable. I only knew there was that problem because of my background as a nurse. I did not know that the Dr wanted me to take their temps 4 times a day. It also outlined what to do for apnea episodes and when to call the Dr. A child without a mother as a nurse probably would have died, all for the lack of 2 pages of Dr.s orders.
I create medical blue books for myself, family, friends and colleagues..It is,an invaluable time line…of medical reports, discs, research ,referrals. You can hear my story on futuretech podcasts, how to be medically proactive,being informed , being proactive and taking charge of your health.
The doctors who have seen this book were glad that a history and timelines were created…it saved them time and offered great insight for the patients future treatment.
If Amazon, Microsoft, Apple, can keep track of all your purchase information and accounting financial information, logic says one day they will organize all your health data in one place on encrypted servers that will be easily drilled down to details about your health in a timeline fashion.
I often tell patients: every doctor/hospital has their own electronic medical record (EMR) system and they can’t communicate with each other. It is all because of greed. Every EMR provider wants to protect their turf and won’t allow information sharing. It would be as if each bank issued their own currency and you couldn’t exchange one banks’ currency at another bank. If this were the case, the financial system would quickly collapse. But here we are in medicine with the same situation, only instead of the system falling apart, the patients suffer. All it will take is the stroke of a pen by lawmakers: force them to allow information to be shared across all systems.
Several years ago our family doctor in Texas died suddenly without a directive for control of her medical records. We tried to get our records from the doctor released but could not. How common was this? Any hope on recovering them?
I find the fact that the bar is so low for when people are transferred or discharged also causes issues. Because of some bureaucratic rule made by accountants at Medicare and what they are “willing to pay for” or for how long. In order to “standardize” billing and rules it loses all common sense. Like somehow 10 steps means you are good to go home as has happened when my mother was having issues, that turned out to be a bad reaction to a medicine that ended up with her back in the hospital 4 more times over as many weeks. Or as my diabetic mother was in a SNF this past week, just across the bay from this doctor, and ending up with a 501 blood sugar because of no good reason. Where she made the comment that she feels worse than when she came in because they wouldn’t give her insulin timely. But I can’t be there 24/7, I have a full-time job and 2 kids to take care of. That’s what I’m hoping the doctors and nurses will take care of. And this is with the same hospital and skilled nursing facility. It’s not cookie cutter but that’s what they want it to be. So I’ve experienced these gaps, but it’s more than just the records. It also has to be more than the bottom line.
I’ve also agreed on other occasions to discharge my mother to home so that she’s not subjected to exposure to all the bugs that go around hospitals. I get the risks, but sometimes I feel, if they could stay for a day or 2 more and just get over a few additional hurdles, they’re recovery at home goes better and lasts longer too.
Empower the patient, like in India, some doctors let patients keep their records. When they visit the hospital they have a whole stack of medical notes with them. It’s time to digitalise into USB device or handphone icloud record. With international travelling,your medical records need to be with you always if you want the best care.