Lay People Teaching People with Diabetes

I have said this before and I will probably repeat this until I die. Lay people (people with type 2 diabetes and not possessing titles behind their names) often do more good in working with other people with type 2 diabetes than certified diabetes educators (CDEs) or nurses will ever be able to do.

In a conversation recently with one of our local doctors and amongst our own group, we have found out that the level of education, but not the specialization in diabetes education, is the greatest asset we have. Not all the members of our support group have completed college, but many have. Another asset we have is experience with type 2 diabetes and desire to help people. This often pays dividends.

The doctor felt much of our success has come from our desire to help others. He added that our level of research is important and probably the fact that we are not tied to the dogma of any organization has served us well. Allen said yes to the last and added that we don't believe in secrecy and hiding our diabetes from those that we talk to and attempt to help. Jason said that our willingness to share and bring other members into the conversation has also helped and made people we are trying to help know that where one person may not have all the answers, another person may be able to compliment another member of the group.

Sue made the statement that having come from the side of being one of the 'diabetes police' has been a great advantage. She knows what could have happened and did not happen to her, and feels that she has a better awareness of the stereotyping that exists because she had been guilty of doing this. Being one of only two women in our group and receiving the support of the group has taught her many things she would probably not have learned in a largely female group.

Brenda agreed saying that the men in the support group do most of the research and share the information. While she felt that many women would do more research, our group was unique because she and Sue did not have a lot of time for research, but were not excluded because of that. Brenda commented that the day Sue was welcomed into group, made her realize she was part of a group she wanted to remain active in and participate when she could.

The doctor was not aware of this and asked Sue to explain what had happened. Sue knew her husband; Bob wanted to tell the story, so she let him. Bob said that often Sue would be the diabetes police and be pestering those with diabetes about their food choices and telling them, they should not be eating that. Two days after her diagnosis, many of the group were together at a function and several had noticed that she was not loading her plate with deserts and were inquiring the reason.

Bob said he took the opportunity to out her as now having type 2 diabetes. He admitted that he was thinking that she was going to be paid back for her activities, but instead questions were asked about her diabetes and support offered to help her accept her diagnosis. He said she was angry with him for having said anything, but he was excluded from the conversation and all questions were directed to her. After she had tried not to answer a few of the questions, the group had explained the process (similar to grief) she would be going through. They said that when she was with the group, secrecy was out and questions she had would be answered.

Bob then said they told her not to be angry with me as she had enough anger about her diabetes. They said that his telling us about your diabetes was the best thing for her as now she could not keep it a secret and this would allow them to provide help and answer her questions. Bob concluded that the group had lived up to this and had helped her get off her medication and provided ongoing support to help her stay off medications. He continued that then they directed their attention to me and what I needed to do to support her in managing her diabetes.

Sue said they even taught her about the myths she had believed and how wrong they were. She said that the biggest lesson she learned was that being on insulin did not mean they were near the end of life, but living better because of insulin. Sue felt that because her husband was learning about diabetes and supporting her, when he was diagnosed with pre-diabetes, he was just accepted as part of the group.

Tim said that we welcome family members, but will not let them be like some people that run down the group and always have something to say that is against people with diabetes. He stated one support group that Jason, I and he had attended, one family member stood up and berated the people for not telling his wife to get over her diabetes and start doing the things she should. Tim stated that as a group, we will not allow this and will ask the people to leave saying that the person with diabetes is welcome, but that they are not. We believe that support for each other is everything and we won't tolerate this behavior.

The doctor said that must be the reason his group likes meetings with this group and feel welcomed. He said that the emails sent out after the meeting is greatly appreciated by those that were not able to attend. Brenda said this is done for all members when we have an email address. The doctor said he needed to leave and he now understood more about the group and our desire to remain independent from people in the medical profession. Tim said he was always welcome because he was not pushing the ADA or other dogma at us.

Do We Need a New Word for Patient?

It seems that this is becoming a regular occurrence. Someone, somewhere is calling for new terms to describe people or persons. If it isn't for a disease like the different types of diabetes, it is the medical profession trying to obfuscate what they are talking about. Now it is a person wanting a different term for patient. While I admire her approach and her reasoning, we don't need to muddy the waters just to please a few people.

Anytime you present yourself to a doctor in the exam room, you are there as a patient, unless you are a representative of a drug company and pushing the latest drug(s) manufactured by the company you represent. If you are not in a hospital for treatment, or in a doctor's exam room, then you are who you are – Bob, Pat, John, Jane, - well you know who you are.

I admit I am tired of people being supposedly politically correct. This is bordering on the ridiculous. I see no need for a new word for patient. Think of the confusion this could provide. Many well understood words could be affected, such as doctor-patient relationship and this would become meaningless. How would you describe this relationship then? We as people do have some choice words for doctors that are not doing their job or do it very poorly. Similarly, doctors have many choice words they use to describe some patients.

Just as there are different types of patients, there are different types of doctors. Now I will take you to another blog. Dr. Jordan Grumet comes across another meaning for patient although he does not describe it that way. He used the term colleague when talking about a patient in this blog. And, in the way this is discussed, I can appreciate his use more than what others want for the term patient. Dr. Grumet does treat his patients as colleagues in discussions and treatment plans. While he does try to guide them in the decision, but he will listen to them and seriously consider their wishes.

This is one time I am happy that I did not post a blog when I thought I had it complete. Janet Byron Anderson, PhD wrote a great blog for Kevin Pho, MD about four linguistic reasons to leave the term patient remain as it is.

#1. Patient signifies a role we play, not the whole of who we are.

#2. Objections to patient target its unfavorable meanings and ignore favorable meanings that are no longer significant in modern Western culture.

#3. Unplanned semantic change can yield meanings that we’re comfortable with, while leaving the term intact.

#4. Patient has friends we’d have to deal with if we banished the term.

I enjoyed reading her blog and realized that there are people that agree with my position for leaving the term patient stand as is. I hope that you will agree.

Medicare Again Aims to Harm Medicare Patients

How can I make this less painful? I think the best way is to just say it. The Centers for Medicare and Medicaid Services (CMS) is in the process of telling patients to bend over and prepare to be screwed. I don't mean just literally, but factually as well.

If you wonder why doctors will be cutting Medicare patients and moving many out the door, just read this blog by Dr. Jordan Grumet. Then read the press coverage of what the CMS has planned for 2014. The CMS intends to pay flat rates for Medicare visits to outpatient clinics instead of payments that vary with the severity of the patient's condition.

That's right, with the CMS proposed change, a healthy sixty five year old with a cold will lead to physician charges that are the same for a ninety five year old with congestive heart failure, emphysema, and out of control diabetes. What does this mean? Physicians, fatigued and overwhelmed with patient care, will be much more likely to avoid sickly seniors. It pays the same, why not select for the most healthy of the Medicare population? Yes, doctors will be forced into this and seniors with many comorbid conditions will be forced to use emergency rooms instead of seeing their doctor.

What upsets me even more is this is what CMS is doing to doctors, this parallels what the Affordable Care Act is doing to many doctors, and this will likely force many doctors out of the practice of medicine, as we know it today. This will cause many doctors to open contract medicine offices and not serve Medicare and Medicaid patients. Contract medicine encompasses “boutique”, “concierge”, “retainer”, and “direct care.”

For the present, hospital emergency rooms have been left untouched, but when CMS moves into this area, look out Medicare patients. Patients that have multiple medical conditions may be facing euthanasia because no doctor will be able to afford to treat people with multiple medical conditions.

This is serious enough that writing your members of Congress should be your goal in the month of December. It would not hurt to write letters to the editor of your local newspaper.

Discharges Against Medical Advice

This is a delicate issue for some people. Until you have been in this situation and had to deal with the threats from doctors and nurses, this is not always a situation with clear answers. I am talking about patients who do their own discharging from a hospital. Hospitals call this “discharges against medical advice.”

Even the figures are estimated because hospitals do not want this public and is why doctors and nurses threaten patients who attempt to do this. Patients are told that their insurance will not pay the bills and all will fall to them. The estimates are that as many as two percent of all US hospital discharges or approximately 500,000 per year are designated as against medical advice. Most insurance will cover costs, but to be safe, always check with your insurance.

Yes, patients need to be careful when doing this as it can be detrimental to their health and well-being. Compared to patients that are discharged by order of the doctor, patients discharging themselves have an estimated 20% to 40% higher readmission rate. Also, their mortality rate is estimated to be 10% higher. Physicians and health care staff report feeling distressed and powerless when patients choose suboptimal care.

Well, I have been there and done that and the threats against me were real and did not hold any water. Since I was already under the gun as I was admitted to the hospital for observation, the bills were mine to begin with since I was not admitted as an inpatient, but as an outpatient for observation. When all the tests for heart problems came back negative, and no further tests had been ordered, I was feeling like why should I allow my bill to escalate because they wanted to keep me for observation.

I had told the nurse to start preparing me to be discharged and all I got was the threat that my insurance company would not pay my bills. I told the nurse that since the bills were already mine, what did she care. She walked out and did not return. So I got up, disconnected my IV's and got dressed. Next, in walks my primary care doctor and asks what I am doing. I said I was leaving since I was only on observational status and was not running up the bills I would not be able to pay.

He calmly told me that he was discharging me per orders and that if I would calm down, he would get started. It took him about 30 minutes considering the interruptions by the nurse. Twice, he politely asked her to return to her station and I would be discharged. The third time the nurse interrupted to ask to see the place where my IV's had been and the doctor did look at the back of my hands to see no indication of where the IV's had been. The nurse said I should never remove them as this could cause me health problems. I just said that I have witnessed removal enough times to know how to remove them. All I had forgotten was having gauze available to prevent bleeding on the first one.

When the doctor finished, he asked if I wanted a wheel chair and I answered no because once I was taken to the hospital door I would need to walk out in the parking lot to get to my car. I also stated that I had not been sedated to cause me to be unsteady on my feet or to be concerned about driving. He agreed and called another nurse to walk with me to the door of the hospital. When we entered the elevator, I warned the nurse to hold on, as the elevator would jerk pretty good when it started to drop and when it arrived at the floor we needed to get off on. Needless to say, she took a fall because she ignored me. She regained her feet and I told her if it stopped on any other floors and when we reached the main floor, it would repeat this. She did grab the bar and when it stopped, the braking almost caused both of us to lose our balance.

The article in the Journal of the American Medical Association (JAMA) has much more information about discharges against medical advice and is very informative. It also covers several items I did not get into and why hospitals and doctors need to change policies in the way this is handled and documented.

Meeting With the Group East of Us

In the three weeks since the meeting that bombed on me, I have not felt like going to other group meetings. Therefore, Tim, Sue, Rob, and A.J. were the members that went to talk to the group on December 7. According to Sue and Tim, they had a good reception and were happy to hear about the “Choosing Wisely” points from the AACE and ACE. Many were happy to see the slides of the Health Central Blog by David Mendosa.

Sue said that they had no one interested in getting off medications, but they had some good questions. The doctor for the group did say that he appreciated the discussion and the information they had used. He did say that he was originally opposed to people coming off medications, but if people would follow the rules that she and A.J. had given, he would have a discussion with these patients. When he asked for a show of hands, none were raised.

Tim said the copies of Rob's email were well received and generated a good discussion. Then Tim surprised me when he asked if I would go to another meeting with them after the first of the year. I asked what they wanted us to talk about. Tim said they just want to ask me questions about the oral medications and why I was writing a lot about insulin and especially my blog here.

I asked Tim if he was joking. He replied that the doctor was the one asking and several of the group wanted to ask you questions about oral medications and insulin. Tim said he had talked about the problem we had encountered and that was why I had not attended this meeting. Tim added that at one time, the doctor said he was working with a CDE, but did not appreciate some of the comments he was receiving about her recommendations. When her family moved out of town, he was happy to have no one to work with and this may have caused him some of the problems he was forced to deal with when he was forced to move people to insulin. Plus, he did not feel comfortable with patients' testing and just did not bring it up during patient appointments.

I asked Tim if he would go and have his projector available. Tim asked what I was thinking about. I explained that I would put together a set of slides to present the material and handouts for them to have for reference. I told Tim I would use some of my blogs and other material for the slides and handouts. I added that I was thinking about a few blogs by other bloggers, but that I wanted to review them first.

Tim asked what I thought about bringing several of the groups together for one meeting and not doing two or three meetings. I told Tim I thought this was a great idea and we should present it as a trial to our own group and then have three or more available to assist with the larger group. We talked some more and Tim was in agreement to bring as many as possible from the group we had the bad meeting with and let them see a large group in action.

I told Tim that we could have the weather to contend with and I wanted to bring Jason into the discussion and see if he agreed and we could take a few pictures to send to his doctor friend. I added that we could send this information to him and a list of topics to see if this could help motivate some of his patients into a support group. I said yes, this could mean a long trip, but Tim was in agreement and we called Jason and asked if he had an hour or more for an impromptu meeting. Then we called Allen, Sue, and A.J.

When we were together, Tim explained what we had tentatively planned. Jason and Allen agreed, but Sue and A.J. were concerned about weather problems. Tim said we could set a date and an alternate and if weather was a problem for both, we could reschedule for a later date. Sue was still not in favor and we decided to postpone until April or May and Tim and I would handle what we could for the presentation we had been asked to do.

Allen asked if he could go and we agreed. Jason did ask if he could still contact his doctor friend with a list of topics and see if there is a positive response. We agreed and Tim said he was asking for a written statement from Sue and A.J. and we would convert it to slides. Sue said she would not have time until after the first of the year.  Tim said if possible by the end of January and Sue agreed. Tim said he would show them the slides long enough before a meeting to make changes if necessary. With this, we ended our impromptu meeting.

Knowing Your Test Results

This is a continuation of my last blog. The fellow had more to do that day, but wanted to continue our discussion. He asked to meet me the next day and I asked if he minded if I included a second person if he was available. He agreed and we set the following afternoon to meet. Then I called Allen and asked if he might be able to be present after explaining what was happening. Allen asked if I had said anything about the VA and I said that I had not, but that was part of the reason I was asking him to help.

We met the next afternoon and the fellow said he would feel more comfortable away from his house as his daughter would be there shortly. I asked if he had any of his lab tests available and he said he had them in the packet in his hand. He had a note on the refrigerator for his daughter and we went to Allen's for the rest.

After we got there, he pulled out quite a number of test results and we went over the most recent ones very carefully. Allen asked him if he had a computer and he said he did and I asked if he had interest in putting them on a spreadsheet or in a database. He said he was comfortable with a spreadsheet and Allen pulled up his and because I had taken my wife's portable, I brought mine up for comparison. He told Allen he liked mine and asked to see how it worked. He said it was the same version that he had and felt he could adapt it quite easily.

Allen said he did not like Lotus 123 and he could do the same in Microsoft Excel. I said if he has 123 he would need to work with mine and that if he gave me his email address, I would send him a copy of my blank spreadsheet and all he would need to do was start entering information. Since I had a blank in my wife's portable, I would rename it for him and we could start filling one in for him. First, we showed him what he was looking at on his lab tests and looked at the plasma blood glucose results and showed him the small variances he had.

Next, we went to the A1c results and showed him where they were on the lab reports. We showed him how consistent he was and that could be why the doctor was not looking at his blood glucose logs as he could see that there was small changes and not an upward trend. Allen commented that at one time he would have liked to have been that consistent. It was certainly better that the swings he had at that time.

We discussed the importance of being consistent and from what we could see; he was doing an excellent job of managing his diabetes. The fellow said we had only gone back two of the three years he had diabetes. I said that the last two showed that if he had problems the first year, he was now managing his diabetes very well. This surprised him and he thanked us for saying that. He was concerned about the lows he was having and said the doctor still wanted him testing only in the morning and he would ask for more test strips because of the lows, but could not promise Medicare would pay for them.

Allen stated that Medicare probably would not even with him being on a sulfonylurea. Allen said he was surprised they had not forced him to a different meter and test strips. The fellow said they had tried, but with him obtaining them from a local pharmacy, he was paying the difference after Medicare and his supplemental insurance covered what they allowed. He said that was the reason for his second meter, which he showed Allen. Allen said okay, that was why he was managing his lows so well and not burning up the more expensive test strips for them.

The fellow did say that the doctor had explained why he should not take his medication if he was not feeling well and would not be eating a meal or two. The doctor said if he was in the normal morning range, not to take his medication unless he was above 150 mg/dl. His doctor had said to use his meter if he felt like eating his noon meal and to take his morning pill at the noon meal if he was over 130 mg/dl, otherwise to only take his evening dose if he would be eating then.

Allen then asked if he had been in the military. When the answer was yes, Allen asked why he was not receiving VA assistance. The fellow asked what VA assistance was and Allen knew he had work to do. After finding out that he had his DD214 at home and could find them, Allen said for him to find them and he would take him to the courthouse, have them recorded at the Recorder's office, and then take him to the VA office to file for VA assistance. Allen asked if he would have them by Monday and they would do it then. The fellow said he would have them then, but he had a meeting in the morning and said he had the afternoon free. Allen said okay and he would be there at 1:00 PM. That was agreed and we took our leave and I drove him back to his house.

We talked briefly about the VA benefits and I said his testing supplies would not be a cost. His only cost would be for medicine and that would be means tested annually and his copay would be determined by that. I said he would need to talk to his pharmacist about his medications to determine which were generic and what their cost for a 90-day supply would be, as he would not want the additional cost from the VA. He said his two medications were already generic and he doubted he would need them from the VA for a copay. He said that his meter and test strips would be a great help. Before he got out of the car, he thanked me and reminded me to send him a blank spreadsheet. I just said I already had and it should be there or would be shortly. I said the email had my phone number as well.

Testing with a Purpose

For people with type 2 diabetes, having limits on the number of test strips can create real problems. Our medical professionals often do not tell us about blood glucose testing. Then our medical insurance companies limit the number of test strips they will cover.  What makes me upset is the number of people with diabetes that refuse to learn the advantages of testing.

I have met individuals that are saying they are testing only for their doctors because this is what their doctors have requested. When I ask them if their doctors have looked at their testing logs or downloaded their meters, they admit that the doctor does not do either. At this point, I ask how many strips their insurance or Medicare/Medicaid pays for or reimburses them to use. Most have no idea and this tells me they don't care or don't understand the value of testing.

I even had two people say that they would not fill out and return the log required by Medicare to continue receiving testing supplies. Both had stopped testing as a result. I did take time to explain why Medicare wanted the number of times per day and month. One just said it was none of their business and clearly stated he would not do this. The other did ask for assistance and after I covered the first sheet, felt he could handle it. I took time to ask which medication he was using. He was on one of the sulfonylureas and had some days when he tested two to four times more because of a low.

Further investigation revealed the lows happened on days when he was not feeling well and often did not eat a meal or two. I advised him to talk with his doctor and see if he should not be taking one or two doses of his medication. He said he normally tested his fasting blood glucose level as soon as he was awake in the morning and that he did not have another test that day unless he felt sweaty or shaky later in the day. I asked him what his blood glucose readings were in the mornings. He said generally in the 85 to 105 mg/dl range, but about once a week or ten days, it could get up to 115 mg/dl.

He stated that he was supposed to take one pill in the morning and one in the evening. I asked if breakfast was one of the times he would not eat. He indicated that it was. I suggested that he not wait to talk to his doctor, but call immediately so that the doctor could call him back that day. I said that his blood glucose levels were such that taking his morning medication would cause hypoglycemia and thus his sweating and shakiness resulted when he did not eat.

I also suggested that on the mornings he was not feeling well and might not eat breakfast that he forego his testing and test before his evening meal to see what his blood glucose level was. He stated that his doctor had always advised him to test in the morning shortly after getting up for the day. I said that is often the case, but with what you are experiencing; he should allow what I suggested. I said because Medicare is only allowing one test strip per day, and with you on a sulfonylurea, testing alternatives should be allowed by your doctor.

At that point he opened up and said that he had a second meter and purchased extra test strips from a mass merchandise retailer and they were what he was using for testing when needed for lows. He had not told his doctor about this and I said there is no need. I said what the doctor is looking for or wanting you to look for is trends in your morning readings. He said the doctor is not looking at his testing log to see if there are trends. I asked if his A1c levels had varied up and down from one test to the next. He asked what A1c tests were.

I knew then I had to do more education. That will be included in my next blog.