Additional Assumptions Patients Should Not Make

This is a continuation of blogs from May 10, 2012 and October 17, 2012.

Don't assume the doctor knows what you are thinking.

I wish I would have been listening more carefully when Dr. Peter A. Ubel of Duke University was on the Tavis Smiliy program on PBS discussing his book “Critical Decisions.” I just happened to hear him make the above statement on the late night early morning (locally 0100 AM) show of Oct 18, 2012. He commented that patients need to speak up because doctors are not ESP aware. After reading the reviews about his book here, I looked at the other books he has written. They are interesting and on controversial topics of health care rationing and assisted suicide. Many physicians and nurses are pushing for assisted suicide and healthcare rationing (euthanasia), so be alert to the position of your doctor if you are opposed to assisted suicide.

His answers to Tavis's questions about communications were most interesting and he stressed the need for communications between the patient and doctor, even if the time constraints prevented extended communications. This is why people like David Mendosa and me write blogs about preparing for the doctor appointment. Yet many people just don't understand the need to optimize the time with their doctor. My health depends on optimizing the short time I have with the doctor.

Do not assume that your doctor is completely independent of interest conflicts.

This is something many patients do not consider about their doctors and is a fact of life that needs to be at the heart of every patients concern about their doctor(s). Many doctors are honorable, but they are human and can be influenced by money or other enticements. Even with this being on a neurologywebsite, it is applicable for all medical professions and doctors.

Three states do have mandatory marketing disclosure laws, which require the reporting of physician payments. The states are Minnesota, Massachusetts, and Vermont. Anyone can also access Dollars for Docs (bit.ly/cZzi9A), a free ProPublica database that allows individuals to search by physician in order to find disclosed payments made by 12 pharmaceutical companies to healthcare practitioners. Some patients are already using this resource. Much of the data available may be incomplete.

As patients, help is on the way. Unless there is delays (and do expect them), beginning in 2013, the implementation of the Physician Payment Sunshine Provision of the Affordable Care Act will provide a database of financial relationships that will be available to patients. The final regulations from the Centers for Medicare and Medicaid Services (CMS) are not complete, and many physicians are concerned about the accuracy and manner in which the tool will display information. It is expected the physicians will call on CMS to delay implementation.

Never assume that the doctor will follow protocol or your wishes near the end of life.

Yes, in a survey conducted by Medscape and published in their 2012 Ethics Report asked several questions related to end of life. It is immoral the percentage of doctors that would do things in violation of do not resuscitate (DNR) orders and orders to resuscitate. Many look to sidestep orders by going to an ethics committee and follow those recommendations over wished of the patient or their families.

Never assume that the doctor is giving you all the information.

In the same ethics report above, the percentage of doctors that would withhold information is only ten percent, but another 18% hide behind the “it depends” defense. In cases where the doctor feels a procedure is necessary, ten percent think it is right to withhold adverse information and another ten percent use the “it depends” defense.

Take time to view the slide show to find out what the doctors think of the 20 ethical questions. You may be surprised!

Finally, never assume that the hospital is working in your best interest.

Hospitals and healthcare facilities are required to review code status with authorized decision makers, (i.e.), administrators, to see if they can ration your care and thereby bypass legal barriers to resuscitation orders. This is a two edged sword for the well-being of the patient. Those who wish to have every reasonable attempt made to keep them alive are often euthanized in the name of quality of life to avoid wasting money and resources. Others that have do not resuscitate (DNR) orders are resuscitated because according to the hospital and doctors, they are too young.

Therefore, it is always wise to have family members involved in any hospitalization where end of life questions may become a factor. It is even wise to have a family member that is capable, or two that agree with your wishes, empowered with a medical power of attorney or full power of attorney to see that your wishes and desires are followed. If a family member is not available, if you have a friend that you trust, then give them a medical power of attorney.

Always be aware that some hospitals and healthcare facilities will attempt to bypass legal orders and may try to ration care. Many hospitalists and nurses are known to pull together to cover up adverse advents. Yes, I am very wary of many hospitals and even more wary of most healthcare facilities for the mistakes that are hidden from patient's relatives and investigatory agencies.

More Assumptions Patients Should Not Make

Having written this blog about assumptions patients should not make, I need to revisit the topic to add a few more assumptions not to make and a few things that it is better to avoid. Some of these ideas have appeared in other publications.

Never assume you are receiving continuity of care.

This is more difficult especially when you have multiple chronic diseases or illnesses where you need to see a variety of specialists. This is a problem area that requires vigilance on the part of the patient and/or family members. This should be something that you consult heavily with your pharmacist to prevent conflicts of medications. Some doctors are great in looking at your records before issuing a prescription, but others can upset the best plans and it only takes one to mess it up and put you in grave danger.

Never insist on self-diagnosis or self-treatment.

While we know our bodies better than anyone, self-diagnosis by the patient can be deadly and is not recommended. It is better to write down all the symptoms that you notice and hand them to the doctor. A diary of symptoms can be a lifesaver when doctors put you off and make unwarranted assumptions. Sometimes these assumptions can be correct, but often they may not be completely correct and the partial treatments may mask the real problems. Let the doctor ask some questions and start eliminating possible problems. The doctor can then order any tests necessary to confirm or rule out illnesses.

Never assume your doctor is always right.

This is a problem for many patients. We do not want to believe that our doctor could be wrong. If you are one of these patients like me, just spend a few months watching the “Discovery - Fit and Health” channel and the “Mystery Diagnosis” program. Yes, most doctors haven't a clue of what is going on as we are talking about rare medical conditions, but the way these doctors handle these cases almost makes you want to reach into the TV and choke the doctor. Patients are often accused of wanting attention or are letting their imaginations get the better of them. While these are the extreme, I hear stories like this from people around me when they are angry with their doctor for ignoring them or not taking them seriously.

Do not assume that the doctor has preformed all the necessary tests.

As a patient, this may be impossible to know whether the necessary tests have been done. This is one time you, as the patient, may need to ask some very direct questions. Never mind what the doctor thinks, it is your health and these questions may save your life. How do you know what to ask? First, you need to ask what tests have been done and what they determined, if anything. Second, ask what other tests could be run. If the doctor starts dodging the questions, you know that there are more tests that may be of value, but this doctor does not know enough about them to be comfortable using them. This is when you know that you may need to seek another doctor.

Do not assume that the doctor is giving you the correct medication or dosage.

Many doctors will give you the best medication after evaluating you and your condition. They will ask questions and probably use some tests to make this determination. If the medication is new to you, make sure you get the correct spelling and then look it up in the Internet to determine if this is an established medication or whether you are being used as a guinea pig for a new medication. Some new medications may be excellent for you, but always be alert for unusual side effects and do not be afraid to talk to your doctor about taking you off the new medication and to an established medication. Read this by Trisha Torrey as she has some good discussion points for you to ask the doctor. It may be in your best health interest not to be a guinea pig for a new medication.

The next question is whether you are receiving the correct dosage. Most doctors will start with a lesser dosage and increase the dose if needed. Be cautious if you are started on the highest dosage and the doctor does not want to discuss his reasons with you or discuss alternative medications. I was considering changing doctors, but during the first appointment, the new doctor insisted that all my medications would need to be changed. When he ignored that I received many medications through the Veterans Administration and stated that I would be coming off insulin and go on oral medications for diabetes, I knew this was not a doctor I could work with. When he stated that my A1c of 6.1 was too low and that I should be between 6.5 to 7.5, I admit I went a little overboard when I asked if he had gotten his medical degree as a prize in a cracker jack box. I said that if he objected to one hypoglycemic reading of 63 mg/dl, then he had no understanding of diabetes and I would keep my endocrinologist and other doctors. That was the end of my appointment, and I suspect by mutual agreement.

Do not assume that your doctor will give you a referral if one is needed.

This can be a delicate issue. Some doctors are willing to refer you to a specialist. Other doctors are so puffed up with their own importance that they feel that they are the only source of medical care you need. Still others will just tell you to find another doctor if you ask for a referral. The last two types are doctors you need to avoid if at all possible. Be cautious if you live a long distance from your primary care doctor and it is even farther to the specialist or another primary care doctor. This article is a good review of possibly how to approach the topic, but be careful if you suspect you have a doctor mentioned above. Some doctors may seem hard to approach; however, done properly, you may get the referral needed. If you know that the referral is necessary, then you may need to request it and replace doctors if necessary. One alternative I have found that works is talking to my medical insurance company and explaining the situation. I was sent a list of acceptable primary care doctors and even a few specialists that I could see without a referral. I may have been fortunate with the person I talked to, but everything worked out for the best when I needed it.

I will continue to look for additional ideas for another blog on this topic.

Ten Bad Assumptions Patients Should Not Make

If you wonder why I praise Dr. Rob Lamberts, take time to read a few of his blogs. Not only are they doctor oriented, but they are also meant for the patient to read and learn. He stopped blogging for some time last year, but is back and putting more common sense out for patients to use. This blog is excellent reading and should be paid attention to since he openly admits doctors are fallible and make mistakes. Even I picked up some good pointers. Others I have been aware of and have picked up the slack when my doctor forgets. If only our or I should say my doctors were this open to admitting they were fallible.

I like several of his opening statements. Patient – pay attention! “Don't assume anything. Assumptions can kill.” Does he mean this? Yes, and then he lists ten potentially harmful assumptions. I can only add – if you don't read this, then you have a lot to lose and it could be fatal.

I am taking his list and adding my thoughts as a patient:

Standard care is the right care

That is right; do not assume that you are receiving the right care. The medical community has attempted to make this clear in several ways. You should be aware of this regardless of where you are a patient. I suggest you read this by Trisha Torrey about the Choosing Wisely Campaign. Dr. Lamberts uses several from different specialties, but they are good pointers and you do need to question your doctor if any of these are suggested.

My doctors communicate

I have found this to be a problem. Doctors do not communicate as much or as often as they should. Even though doctors may not like this, I have been forced on numerous occasions to tell a doctor something that another doctor should have already told him. One instance was a recent surgery where I made clear reference to the fact that I was a person with diabetes on insulin and unless they could guarantee that my IVs were dextrose free, and then they had better be matching with an insulin input. Well, you guessed it, no communication. Surgeon felt it was not necessary until I filed a formal complaint. Then he had reasons for ignoring me saying I had not informed him of my endocrinologist. I had also stated that in my complaint that he had ignored the policy for treating people with diabetes established by the endocrinology department.

Therefore, I learned two lessons here. Make sure everything is in writing and that the signature indicates that they (the doctor and maybe some of the staff) have read and understood what was stated. I did have to correct my blood glucose reading of 300 that was recorded by me, as soon I was able to get my hands on my testing supplies. So much was ignored by the surgeon and his staff.

My doctor has accurate records

Never fall into this pitfall. Most medical records are very incomplete! Items that should be part of your records seldom are. Some of it may be, but even then may not be as complete or comprehensive as the information should be. Few patients have doctors that will let them review records for completeness and not without many delaying tactics and attempts to remove information they do not want you to see. Doctors are notorious if not nefarious for their personal notes about the patient. Often this contains personal observations about you they would be embarrassed to have you see.

Few, if any, patients keep notes about their visits to the doctor with updated lists of medications, surgeries, problems, and family/home situations and bring it with you on visits to your doctor. However, this is a recommendation that you should start. Often doctors will have much of this information in your first visit and will often copy this for you, so don't be afraid to ask.

If you have a doctor that openly allows you to look at you own records and makes corrections pointed out by you, you have a rare doctor and need to cherish this doctor and cooperate with the doctor. For more information when there is reluctance to let you review your records, please read this.

No news is good news

This is one assumption that could kill you. Doctors do forget, and office staff personnel are not the best as relaying information back to the doctor. Too many office staff just assume that the doctor already knows the information and even though it came in a fax they just received or they opened it from the mail, they file it in the patient’s record file. Now what good does this do the doctor and you as the patient waiting to know the results of the tests. This is why you must pick up the telephone or the cell phone and call the doctor's office. Explain the purpose of the call and the test you are waiting to receive the results. Do not accept the answer that the results are in the mail. This is a ploy some office staff people have to get rid of calls quickly so they can get back to the important gossip they were discussing. Over the years, I have seen and heard this and more. Always make sure that you get a copy of all lab results, as this is one way to help track your own health.

I will be notified when things are due

I would not try to take this to the bank. Doctors are busy and the doctor’s office staff thinks they are busy, but they do not have a daily file of when to call patients or when something is due. Even most offices with computers do not have this programmed to call a patient the day before to remind them of their appointment the next day. A few do, but do not use it. Others have found it and do make use of it. Even in this day of electronic health records, or electronic medical records, the saying of garbage in equals garbage out holds true. If it is not entered in the records, that test you were to have had will not happen, unless you make yourself a note and remind them that it is due. Do not be afraid to ask. It is rare to have a doctor’s office that records things timely and keeps the office operating efficiently. Even then, mistakes are made.

Hospitals care

Yes, hospital do care – about one thing and one thing only – the bottom line. If you believe they care about anything else, then make sure you are not in the obituary column of today’s paper. By all means, read Dr. Lamberts discussion on this.

He make it very plain the intent of hospitals and their profit motives. So if your doctors work for the hospital like mine do, be very aware of what Dr. Lamberts has to say, it could save your life. The hospitals like to use unneeded tests and tests with high profit margins on unknowing patients.

And. if you do not believe Dr. Lamberts or even me, read this article about our uncaring and unscrupulous hospitals and their desire for profits.

More is better

Dr. Lamberts is right on about this. This is an assumption that can be costly and cause more problems than it cures. We have all been bombarded with the commercials for different medications they want you to talk to your doctor about and get a prescription to take the medicine. If you are a hypochondriac, then I can understand your instance that you have this condition and want the medication. But chances are your doctor will not agree with your assessment and you will be better off and not lighter in the pocket as a result.

New is better

Oops, I made a mistake and mentioned this for the last item. Well they can apply in both cases. New is not always better. Please read what Dr. Lamberts has to say on both items.

The doctor will think I am stupid

Dr. Lamberts has the right attitude on this one and I hesitate to say more. But what the heck, with the exception of a few doctors, most already have this opinion of patients, so why disappoint them. Just remember when you have this thought, you might actually teach them something new or give them a challenge they have no answer for. I enjoy making a doctor squirm when he wants to prescribe a new medication. I ask what the side effects are and whether this will be a lifetime medication or a trial to possibly replace another medication. If it is to replace another medication, then I let them know if the veterans administration does not carry it in their formulary, forget it. If I do not recognize the drug, I make sure I get the name correctly spelled out and say I will look it up and talk to them the next visit. Needless to say, my doctors are now onto me and know better than to bait me on this.

They also know if I am complaining about something, they had better listen, as I do not mince words when I think a doctor is ignoring me. When a doctor did not believe me, and would not give me a referral, I got the referral from another doctor and was right in requesting it. The ear, nose, and throat doctor made a point of letting him know how bad my inner ear infection was and how I had gotten there.

Doctors don’t want to be questioned

I will admit it has been a few years since I have had a doctor tell me to be quiet and listen. Most doctors do want questions, but the right questions to let them know you want to be in compliance with their instructions. Even this is wrong in my opinion, but it is a game that must be played with some doctors just to get to the questions you really need to ask. Just be careful how you ask as not all doctors have the qualities of Dr. Lamberts. A few doctors are so full of their own importance that they will not answer your questions. These are doctors to avoid, as you never know whether they have heard you or not. Their egos are blocking their view of you and you will be lucky to get out of their office unscathed.

Do – repeat – do take time to read Dr. Rob Lamberts and his blog. We need more doctors as straight forward as he is. He sets the bar pretty high for other doctors to get over.