Thursday, September 18, 2008

The Electronic Medical Record-Changing the Way Healthcare is Delivered?

Monday was my second experience with the new Electronic Medical Record (EMR). Our first visit with the EMR was last year, when our pediatrician’s office converted. The nurse came in to take Dear Son’s history, walked in with her laptop, sat down and typed in my concerns. She took Dear Son’s vitals and then entered everything into the system. Very clinical, I thought. And extremely impersonal. I hated it. When the physician came into the room, he just jotted down the notes and elected to enter them into the EMR later. I was relieved.

My second experience with the EMR was on Monday. It was our first visit, Dear Son and I, with this GI physician, a motility expert. Dear Son is considered a complicated patient, by most physician’s assessment. At this stage of the game, he is out of the area of expertise for a lot of physicians, due to his diagnosis. Dear Son suffers from Cryptogenic Infantile Spasms, caused by the ARX mutation, has Progressive Motor Dysfunction and has a Progressive Neurological Disease caused by an abnormality of the dopamine receptors.

Our visit was scheduled for 3:40 p.m. We picked him up at school at 1:15 and arrived early for our appointment, allowing plenty of time for road closures. We had experienced heavy flooding in most areas, the worst in thirty years, so several highways were closed making travel difficult. We got into the examining room around 3:45 p.m. and the physician came into the room around 4:35 p.m.

Our visit started out fine. The hospital has forwarded extensive paperwork to be completed prior to the visit. This included pertinent medical history, all prior GI tests, medical history from birth to present, along with all hospitalizations, surgeries and growth records. The nurse took the medication sheet I had prepared and left the room to enter the information into the Electronic Medical Record. The physician, whom I had never met, came into the room and introduced himself, shook my hand and started the visit. He had read the history I prepared and asked a lot of questions. As we went through the visit, the physician repeatedly stopped to enter information into the EMR. When he did this, he would have to turn his back towards me, and then enter the data in the system. As he did this, he would take time to review it and edit it. Then he’d stop, turn around and continue on the visit, then stop again, turn his back and have to enter information into the system again. Our visit that started at 4:35 p.m. ended at 6:20 p.m. Over half of the time, was spent with the physician entering information into the EMR. It was distracting, it was annoying and excruciating to endure. I felt like I was having to do his job with him. The physician was personable and knowledgeable. He communicated well and when he asked me questions, he faced me and did everything right on an interpersonal level but there just wasn’t any getting around having to stop a visit and enter information into the EMR. I even asked him in the middle of all of this, how he liked the EMR. He explained that it was o.k. and that it took a lot of time, especially for complicated patients like Dear Son. He said it wasn’t as bad for the simpler cases however I would guess when you work at a Big City Pediatric Hospital, you probably don’t get many simple cases. He said that he would have to come back tomorrow and review the EMR and add more detail since he was just summarizing today. I thought of how excruciating it was to endure this. He wasn’t just jotting notes in here. It was more like the process of writing a letter; you know the kind when you sit down you think it’s only going to take five minutes and forty five minutes later, you are finished. In this case, the physician would type something, then go back and delete it, then write it again and edit it repeatedly. It was downright annoying. I wanted to take the keyboard away and just type it in myself. After all, I knew what my concerns were and I’d have been more than happy to summarize that for him.

In Dear Son’s case, his motility was affected by several issues: his gene mutation, the progressive motor dysfunction and the Scopolamine patch. The dopamine receptor problem (The progressive neurological disease is an abnormality of the dopamine receptors.) and lack of gaba (due to his gene mutation) may result in increased vomiting, GERD and gastric emptying delays (both dopamine and gaba are involved in reflux). In addition, when he is ill, his motility is worse, resulting in the bloating and vomiting issues we experienced earlier this year. The physician recommended a new gastric emptying study be completed and then after that, a possible g/j tube would be inserted. The g/j would allow us to bypass Dear Son’s stomach, where many of the motility issues are occurring. In addition, I’d have a consult with nutrition. I had many questions however it was a bit awkward trying to converse with him, with constant interruptions to enter the data.

Sometimes, I’d lose my train of thought because he’d ask to stop and enter in the data before he forgot. In the meantime, I am trying to think through the ramifications of this new g/j tube on our lifestyle. For example, the g/j tube would mean that he could only receive feedings via the feeding pump and never via a syringe since via the syringe would cause severe diarrhea. This would mean that I would have to give meds at midnight and then get up by 3:30 a.m. to start his feeding so it would be completed in time for school. This would be difficult to administer since I need to get some sleep and the sound of the pump running all night is loud and annoying, assuming I could actually get up at this hour every day, in addition to having my own business, working, and caring for Dear Son 24/7 without any nursing help. Of particular concern, was that if the g/j tube would become dislodged, I’d have to take Dear Son to the nearest ER where he would have IV feedings, until the g/j tube could be placed in him again. Without a wheelchair van, I’d have to call an ambulance for transport and this would be very expensive. It would also mean that on a day when I’d have a doctor’s appointment, it would be extremely tough-how would I administer a three hour feeding when I am transporting him to a doctor visit? While a g/j tube might be a simple solution bypassing the stomach motility issues, from a more practical standpoint, as far as I am concerned, it requires more thought as a long term solution for Dear Son.

The visit was compounded by the physician’s heavy accent, making it hard to understand him at times. I had to ask him several times to repeat things, which only added to my frustration and probably his as well. Entering all of this data in the system, along with sixteen year medical history, was time consuming for the physician.

There were signs in the examining room about how they were converting to the EMR. I thought about how expensive it must be for a facility to do this. If every visit takes 50 % longer, then a physician will see less patients in the course of a day, just to enter in the data. In addition, if I personally were seeing a new physician, and he was stopping to enter data into the EMR, I can’t imagine I would ever feel comfortable asking him about a personal concern relating to a medical issue. Entering data into the system, is about as impersonal as it gets.

I remember a few years ago, when I went to an orthopedic spine surgeon about my back issues. He had asked if it would be o.k. if he dictated during my visit. I agreed. The visit started and he introduced himself and asked about my concerns. He stopped and dictated my name and concern. Then he reviewed the x-ray, explained it to me and then stopped and dictated the x-ray results. This went on through the entire visit. I never saw this physician after that because I refused to pay for an office visit and then have to sit there while he did his work, dictating. I chose another neurosurgeon instead, one where I didn’t have to endure his dictating. It was the same experience with the EMR. I felt like I had to sit while the physician did his paperwork, even though there isn’t any paper involved anymore.

The problems with the EMR in a patient visit are as follows:

  • It’s time consuming. It took 50% more time to get through our office visit when he had to enter the data.
  • It’s annoying. I don’t want to sit through the data entry piece.
  • It’s impersonal and critical information could be missed. If I am not comfortable talking to a physician in the office visit, then perhaps I might not share information that may be critical to a diagnosis. If that occurs, then the diagnosis could be wrong and the treatment may not be effective.
  • It’s disrespectful. I don’t want to sit through a physician doing his paperwork any more than I think he wants to sit with me while I do my paperwork. If they are asking me to complete medical history paperwork prior to the office visit, then I would expect that they could enter the data after I leave the room.

From a healthcare executive perspective, the problems would be:

  • It’s time consuming. If office visits take 50% more time, the physicians are seeing less patients. Less patients equal less revenue.
  • It’s expensive. Not only are the docs seeing less patients, but I’ve just replaced a lower cost worker, the medical transcriptionist, with my highest paid employee. Instead of the transcriptionist turning dictations into medical records of sorts, I have the highest paid worker, the physician, performing data entry.
  • It’s less personal and critical information could be missed. If the patients are comfortable and can’t bring up their personal concerns to the physicians, then the physicians make the wrong diagnosis therefore increasing medical errors.
  • Some patients don’t like it. If a patient finds it annoying, they may elect to go elsewhere, therefore decreasing revenue.

As a patient, I hope I don’t encounter any more physician’s with the EMR however I know that is only wishful thinking on my part. As more and more convert to electronic medical records, I hope they give some thought on the front end to how this will impact patient care. I am certain that even if they don’t give it any thought, about the time they realize the money they are losing by having their physicians spend precious time doing data entry when they could be making money, will change everything. After all, if I were employing physicians, I’d want them performing the tasks that no other person in my organization was qualified to do. In essence, I’d want them doing the job they were paid to do. I could pay another work much less to perform data entry. And isn’t that precisely what we are doing when they dictate? We are paying for a lower cost worker, a medical transcriptionist to turn that dictation into office visit write ups. Why make a huge investment mistake and have our highest paid workers, the physicians, do a data entry task? It’s a huge waste of their time and their money. In addition, it’s doesn’t attract any patient loyalty to the organization. What patient wants to sit through this?

The EMR is just another trend towards the depersonalization of healthcare. First we had the hospitalists and now the EMR. What I wish healthcare executives would understand is that the physician is the most powerful person in your organization. The physician is why I come to your facility. I don’t come because you have nice rooms, I don’t come because you are on the best hospital list (o.k. maybe a little on that one), I don’t come because you have nice landscaping. I come to your facility because I like your physician. Your physician is who I want to see when my Dear Son has an issue. It’s who I want to see walk through the door of the hospital room when my precious Dear Son is sick and it’s who I want to follow Dear Son through his medical issues. That is why I come to your facility and that is why I come back. I don’t come to see “any” of your physicians, I come to see “our” physician. As Dear Son deteriorates, the role of his physician’s become more important. Not only in terms of Dear Son’s care but in terms of what I need as Dear Son’s mother. I don’t want a hospitalist to come into a room when Dear Son’s dying, I want Dear Son’s doctor in the room. I want him to tell me that we did everything we could. And that is the power of your physician. That’s what makes me come back.

Wednesday, September 10, 2008

When the Department of Human Services Cuts Hit Home-Who is Left to Care for the Disabled?

Dear Son had been sleeping longer than normal. Typically, he’ll wake up early and once I get his food started via the g tube, he often goes back to sleep. This morning was no different however he had been sleeping for some time now. As a mother, you cherish these few moments to get things done, whether it’s around the house or just taking some time on the internet but this had gone on for a while. Lunchtime came and went, but he still was sleeping. I let him sleep knowing that sometimes, he needs this extra sleep to grow. Other times, too much sleep means he’s having more seizures.

I kept checking on him and finally, around 1:30 or so, I decided to get his lunch time medicine ready and his feeding. His lunch time med is typically given around noon but I have a window of around an hour or so. Since he had been sleeping so much, I opted to give his feeding via the syringes, doing it all at once versus going through the feeding pump, which would have taken an additional three hours. After giving his feeding, I proceeded to dress him for the day. I needed to get a few things from the store, and taking him with, would take all of my energy. Our one hour pleasure walk would be forfeited today, since I would have to lift him in/out of the car four times, for a ten minute shopping trip at the grocery store. That little trip and all of the lifting of his 170 pound six foot frame, would take all of my strength for the day. Normally, I’ll use a respite worker when I have to go to the grocery store, or try to do it while he is at school. Today, being Sunday, I decide to take him along. As I dressed him, his fingers and hands began to shake. It wasn’t uncommon for this to happen and I felt it was typically seizure activity however the most recent EEG showed this was not the case. Regardless, I use the magnet on his wrist to activate his Vagus Nerve Stimulator (VNS) and proceeded to dress him.

Once he was dressed, I used the hoyer lift and got him out of bed and into the wheelchair. Although I use the hoyer lift, there is still a fair amount of lifting involved on my part. The hoyer lift gets you 80% there and the other 20% is you. Once he’s in the wheelchair, I have to lift him up to straighten him out and get his hips into the rear of the wheelchair so he can sit properly. When his tone is off, like today, this is a bigger job. When he’s having a good day, you can get him in the wheelchair with little or not lifting on your part; this is similar to the diagram in the manual. The worse he is, the harder it is to position him in the chair without additional lifting. I am sweating pretty good by now and his hands continue to shake but not more so than before. I use the VNS again, hoping it will kick in. I listen for the vibration in his voice, to confirm the VNS has been activated. I hear nothing.

I pull the wheelchair up to the table and begin to brush his teeth. He’s getting restless now, and begins to cry out. This is not normal for Dear Son, he is normally happy to be sitting up. As I lather on the shaving cream and start to shave him, he begins to yell out more and seems in more distress. I soon realize that I have a full blown seizure on my hands. The seizure gets worse and time is getting limited. He can no longer sit upright and I can tell by the way the seizure is escalating that I won’t have time to get the hoyer lift over to him to remove him from the wheelchair. I’ll have to lift him out of there myself. He’s really yelling out now like he’s in severe pain and he’s shaking quite rapidly. I remove the footrests and tilt the chair forward. I am going to have to lay him on the carpet immediately or he’s going to fall out of the chair. I lift him onto the ground and then slowly let his head down so he doesn’t get hurt. I race to get the Diastat, a rectal valium of sorts, to stop the seizure. I am dripping in sweat now, worried it won’t be enough. I tear open the diaper, administering the Diastat as quickly as I can. Sweat pours out of my head so fast, I can hardly see.

With each passing seizure, I find the adrenalin seems to be pumping faster and faster, at least with the big ones. At some point, as Dear Son deteriorates, you know there will be an end and with each hospitalization and with each milestone loss, every event takes you a step closer to the final day. You begin to wonder as each one happens, if this is “the” one. Because of that, the adrenalin pumps faster and the sweat just pours out of my forehead, like a cartoon charactature drawing in the comics section of the newspaper.

The Diastat is also getting harder to administer. No longer am I giving it to a child, but a nearly full grown man. It’s hard to roll him over and just plain harder to administer. He yells out some more and I begin to wonder if it will be enough. Once it’s administered, it’s just a waiting game to see if it will work. I am sweating even more now, if that were an option. I look at my watch. This seizure has been going on for over twenty minutes now. I wonder if I am going to have to call 911. All I need is for the Diastat to kick in and the seizure should start to recede a bit. The problem is that it’s just not as fast as it used to be. In the beginning, when I started using it almost ten years ago, the Diastat would stop the seizures on a dime. Now, it stops them typically within ten minutes or so. I only administer it if I have a seizure that getting bigger or advancing, as I call it. Fifteen minutes later, the seizure begins to come down a bit and I know the 911 call will not have to be made. Dear Son has beat the seizure. He lies on the carpet, as I rub his back. His eyes are rolling back and his eye lids are having a hard time staying open. I talk softly to him as I rub his back, propping his head on a pillow. I know he will need to stay here until he comes out of this. It’s not long before he’s fast asleep. He’ll need to stay here for a while until he wakes up since it would be too hard to move him like this.

As time goes by, I find myself holding on tighter. The thought of Dear Son not being around is scary. I had a dream the other night that someone was trying to take Dear Son away. I went searching frantically for him and when I found the man, I told him he could take anything he wanted from me, but he could not take my son. I took Dear Son back from the man and woke up in a cold sweat. The clock read 3 a.m. I was so shaken by the dream that I couldn’t go back to bed right away. The next day I told Dear Son about my dream. We have a little catch phrase that I use with him. It is, “where you go, I go” meaning that whenever he has to go into the hospital or do anything, that I will always be there with him. I told him that after I told him about my dream and he smiled. He knows I love him and I love taking care of him. I tell him all the time that there is nothing I love more than taking care of him. He has become my purpose in life. While it’s true, you have to build a life for yourself, the reality is that when you care for a person with this many needs, you don’t have time to do that. They are your life.

This week, I received an e-mail and a letter regarding the cuts by the Department of Human Services in our state. They fund the respite program that we use, along with many other services for people with disabilities in our state. Without these funds, disabled people can not get the care that they need, whether it’s in a group type home or whether it’s receiving respite care in their own home. Our respite funding was cut by $200 which is 20 hours of respite care that we will not be able to use over the next year (typically I receive on average 10 hours of respite care a month, enough to run a few errands). I worried not for myself or for Dear Son, but for those children and adults in homes where the staff was already overburdened (you may recall an earlier post where one of the residential programs has one aide for every 7-10 pediatric fully disabled residents) and there would be additional staff cuts. I realized that in the end, that the only time you are guaranteed good care is when someone loves you. When someone loves you and is able to care for you, your needs will be met. I feel honored that I get to be that person for Dear Son. But I also know that some people don’t have anyone to care for them other than the state. And for those people, they need the funds to employ the people who will care for them. Caring for the disabled is not optional, it’s mandatory. It’s funny, we require driver’s in our state to carry auto insurance, in case they are in an accident but caring for the disabled people in our state is optional. There is a saying that goes like this, “how you spend your money, says a lot about you.” I wonder what these funding cuts say about us. But more importantly, I worry about developmentally disabled children and adults and if they will be hungry longer since there are fewer people to help feed them or get them their food on time, or their diaper changed quickly or that someone can attend to their seizure fast enough. Who is there to help them after the pink slips are administered? We need the Department of Human Services to restore those funding cuts.

Note: The Department of Human Services announced budget cuts last week that will have a substantial impact on services provided by many organizations that serve the developmentally disabled. Our state is retroactively reducing the amounts they will pay some programs by 2-12% Another agency in our area has funding cuts in excess of $500k this year alone. This will result in staff layoffs, reductions in wages and fewer patients being served.

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