Tag Archives: Patient-doctor relationship

Am I Crazy?

As a physician, I encounter patients who have complaints that seem to make no sense.  Either there are too many vague symptoms which point to absolutely nothing, or they are complaining about multiple different issues, that it seems they are trying to find something wrong with themselves.Others times, they are struggling to put into words exactly what they are feeling.

A lot of times physicians dismiss them as invalid or crazy. And sometimes they are right. Sometimes patients have mental disease that cause them to have paranoia or hypochondriasis ( Side note: I am not calling these people crazy, I do not refer to anyone with mental illness as crazy).Frequently you are faced with malingerers who are making up symptoms simply for some kind of gain such as  time off work, opioids, or government or disability benefits.

But sometimes we are very wrong.

A few weeks ago, I was having some vague symptoms. I was feeling feverish and had chest heaviness with mild discomfort breathing or taking a deep breath. It wasn’t the typical shortness of breath and chest pain of pleuritis that I’ve had before.I tried explaining my symptoms to the nurse at the doctors office so she could tell the doctor, but struggled to really express how I was feeling.She called back later ( Yes, the doctor never spoke to me himself) and said the doctor says ” Just go to the ER”.

At this point I’m starting to feel like I’m crazy. I know I’m not sick enough to go to ER, but I know I’m not well. I explain what I’m feeling to the people at work, all while looking perfectly healthy, and they are looking at me like I’m crazy. My parents are telling me I’m probably just getting sick and should rest. I go to a cardiologist, have an EKG and echo, and they find nothing. I listen to myself explaining how I feel, and realize as a physician it doesn’t even make sense to me.

Eventually it gets better on its own, and I’m left wondering what was really wrong with me. Perhaps I will never know. But it reminded me of a lesson I learned early on in the course of my disease. Always take everyone seriously. Listen to their complaints carefully and completely. And if I can’t make sense of it, send them to a specialist who might be able to. Never write anyone off as crazy.

Unnecessary Tests

So something a lot of patients ask me is “Is this test really necessary?” The majority of the times a test is ordered it is necessary, but there are times when they are not. Let me define what I mean by necessary and unnecessary. Necessary, to me, is any test that will rule in, rule out, or confirm a diagnosis. Necessary tests guide treatment, letting the doctor know the next step in treatment, how to alter treatment, or when to stop.

Unecessary tests are tests that don’t really give me any new information that would help determine a diagnosis or change my treatment plan. Here are some of the reasons these tests are ordered.

1) Patient demands it. There are times when I know the XRay isn’t going to show anything because what they have is not something that can be visualized on XRay, but despite my best efforts to explain reasoning and the risk of radiation, they still demand it. It’s horribly uncomfortable to argue with a patient, and when they don’t get what they want, they just go down the block to the next doc. The practice loses business, and the doctor gets in trouble with the administration or suffers low survey scores which can lower reimbursements.

2) To cover our butts. Sometimes we simply have to do it to ” just make sure” and protect ourselves. And we also want to make sure we are doing everything we can for our patients. Better to be safe than sorry.

3) For documentation purposes. Sometimes insurance companies need proof in the form of lab/ imaging results that the patient indeed needs this treatment. Also, sometimes insurance companies won’t cover a certain test or referral that I deem necessary until another test is done beforehand.

4) And, I’m embarrassed to say it, but  some doctors do it for money. Not all doctors do this or want to do this but sometimes we are forced to do so. The last company I worked for wanted me to order sleep studies and ultrasounds on every patient as they were procedures that were done in house and could be billed. My constant refusal caused me a lot of humiliation and reprimanding. Other doctors do them to make up the difference in what they are being reimbursed by insurance. I am not justifying this behavior in any way and I believe that it is a very small percentage of doctors that do this.

Hope  this sheds a little light into the issue of unnecessary testing.

Before the Visit

When I went to facilitate the lupus support group meeting, I gave a talk on how to make your office visit go smoother.  I gave several tips on how to be prepared before and during the visit, so that your time with the doctor is used most efficiently. I know it’s frustrating sometimes to only have fifteen minutes, and then at the end of it feel unsatisfied, because you didn’t get to ask all your questions and voice all your concerns. The participants found the topic useful, so I will share my advice with you over the next couple posts.

1) Choose a doctor you can be comfortable with. There are a lot of factors in choosing your doctor.Do you feel more comfortable with a male or female? Is there a culture or language barrier? Do you prefer someone more straight to the point, or someone you can talk casually to? Deciding upon a doctor is one of the most important parts in your lupus journey. They will be your guide and you need to be able to trust them and feel comfortable telling them personal information. If you’re not comfortable with your doctor, look into switching, maybe another doctor in the practice or a new office.

2) Give yourself time. Try not to book appointments within 3-4 hours of another appointment/meeting/errand. You never know if the doctor is running behind, or if there is an emergency, or if you will have to do tests or bloodwork after the appointment. I always advise one appointment per morning or afternoon session. I’ve had situations where my patients were rushing to pick up kids or go see another doctor and feeling rushed hindered me from being as thorough as I’d like, and the patient was so worried about the time that they couldn’t completely focus. Also, if you feel like you are going to have a lot of issues to discuss, ask for a longer appointment time, so that you have sufficient scheduled time. If your requiring some kind of form to be filled out, make sure your appointment is at least 2 weeks before the forms deadline.

3) Be prepared.
A) Write down any issues you had, preferably when they happen. Note what, where, when, surrounding circumstance, duration, intensity, other symptoms and how it went away. I know personally that sometimes I’ll have some joint pain or another symptom, but by the time I have my appointment I’ve forgotten about it so I don’t mention it to my doc. If I make not of it as it is happening, I can give my doctor an accurate description.
B) Write down all your meds. Read off the bottles and write the name, dose, and how often you take it. Write down not only the meds that doctor writes for you but all the meds, including the ones from the specialist. Also write down any supplements you may be taking. If it’s too hard to write, bring in all the bottles for review.
C) Bring in any reports or consults. Ask for copy of labs or radiology reports when you are at your other docs. Sometimes the info doesn’t move between doctors as quickly as we like. Also take notes at the appointments and write down any new diagnoses/treatments.

Hope this helps.In my next post, I will talk about ways to make the appointment day easier. It’s important to make the most of your doctor’s appointment.

Self Diagnosis

One of the most frustrating things for a doctor is when a patient walks in handing them the diagnosis they believe they have. They’ve been online and they’ve compared all their symptoms, and they even know what treatment they need. They just need the prescription.Now I am all for patients educating themselves and being proactive about their health, but there are a couple things that are wrong with this situation.

First, not all sources are accurate or up to date. There is a lot of information on the web, some of it is good, some of it is not. Some articles are simply just someone’s opinion and have no study behind it. In truth, as a physician there are only a few sources I trust. I will share that in a later post, as well what a real clinical study is.

The second is that it creates a dangerous bias. The patient becomes so adamant about what they believe is their diagnosis that they are unwilling to hear anything else. So what can happen is the patients start telling their symptoms, guiding their doctor to believe what they think they have. They inadvertently leave out other important details or exaggerate other details. The doctor now has inaccurate information, and sadly sometimes doesn’t dig any deeper because the patient has already handed them a lot of information that does fit a diagnosis.

Take for instance Patient A. She has been having some abdominal pain for the past few days. When she does her search online she notices that her symptoms are similar to those who have gallbladder infection. The pain isn’t quite upper right quadrant but it’s close. She has had some vomiting and diarrhea. She thinks she had a fever but she didn’t really check. She thinks maybe the pain occurs after she eats. She fails to state that her urine has been smelling a little funny and cloudy, and that she has been peeing more frequently because she doesn’t see it as being important for her diagnosis of gallbladder infection. The doctor hears all symptoms leading to gallbladder infection, and treats it as such, missing the diagnosis of kidney infection.

I’m not saying that patients don’t know what’s wrong with them, because truthfully a lot of them do. We know our bodies.  But doctors have years of education, training, and experience that helps them determine your diagnosis. We know what questions to ask, and know what information is important and what information is not.If you are at the doctor’s anyway, might as well let them do their job and take advantage of their knowledge.

Work Environments

As many of you know,  I have been job hunting. My first job after residency was a complete nightmare, and I am terrified of getting into another situation like that.In my interviewing process, I’ve come to notice there are three types of work atmospheres- profit driven, patient centered, and physician friendly.

My first job was very profit-driven. My employers were so focused on the bottom line that  patient care and my physician well-being was suffering. The administration would make sure the schedule was double-booked and I would be pressured to order unnecessary tests and referrals. Medicine becomes like factory work, just putting forth product to pay the bills.Every day was a battle with my ethics and the miserable feeling of coming home knowing I was unable to care for my patients the way I wanted to.

In the completely patient centered environment, the focus is on the patients and providing the best care without regard to money or cost. A doctor could spend as long as the patient needed and handle all issues in one visit.The doctor would always be accessible. They would stay late, come in every weekend and holiday, and always be on-call. seems like an ideal practice model, but leaves a lot of room for a physician to be taken advantage of, and not be able to make the money necessary to run the practice.

In a physician friendly atmosphere, the doctor’s lifestyle takes priority. They would only have to see ten patients a day and still make enough money. They could choose only to see the friendly, compliant, and easy patients and refuse to see the demanding, untrusting, and challenging ones. They wouldn’t work weekends, or evenings, or ever be interrupted at home for a patient calls. A great situation for the doctors and their families, but not so great for the patients.

I think the ideal practice is a combination of all three. There has to be a drive to work harder and have the ability to earn more and be rewarded for going above and beyond.There also has to be an environment where a patient can have the access to quality care, and have the time to discuss most of their issues. And there has to be an environment where the doctor is not overworked or over stressed, and can focus on giving the best care possible. I truly hope I can find a balanced practice, and that wherever I go, I will be able to practice medicine the way I believe.

Risk vs benefit

It’s no secret that every treatment has a side affect. And sometimes it seems that we end having more treatment just to treat the side effects. It may see logical to just stop the offending drug, but there really is a lot more that goes into determining a treatment plan. Let me explain.

When it ones to determining a patient’s treatment a lot of things come into play. Allergies. Age. Other medical conditions. Medication interaction.Cost. Patient’s lifestyle and ability to be compliant. And then there comes side affects.

As physicians, we have to take into consideration everything to tailor the treatment for each individual. Let me illustrate. I had a 50 yr old African American who came in for a physical. When I looked at his blood pressure it was high. He begged me not to put him on medications, so I agreed that if he really changed his diet and started seriously exercising we could check in a month. A month later, no change. So I started him on a BP medication which studies had shown worked very well in the African American population. He called me a couple days later complaining of allergic reaction. We stopped the medication and I started him on a water pill. When he came in for another BP check, the blood pressure was normal but he complained of having to urinate every hour. He drives a truck for a living, so it was affecting his lifestyle. I sorted through options in my mind- this one isn’t covered by his insurance, this one isn’t good in people who have abnormal kidney function. Eventually we found a good option for him, but it wasn’t easy.

Most medications come with certain warning labels. May cause such and such. Don’t take if. As a physician we have to weigh out the risk and benefit. Is it worth giving a medication that may cause a bad side effect if we know it’s going to save a person’s life?

For instance, a lot of these lupus meds have some pretty bad side effects. Currently I am on a medication which lowered my white blood count and made me very anemic- both fairly dangerous things.Now this medication has been great up until that point. It was controlling my symptoms and it has been protecting my other organs, like my kidneys. I was finally able to get off long term steroids on this medication. The option to put me on a different medication was offered, but since it would involved coming in regularly to sit for a few hours for infusion, I opted out. It would take a toll at work. In the end, we decided to just lower my current dose a little, and keep a closer eye on the bloodwork.

Treatment is a very specialized art, and it involves a very delicate balance. Doctors and patients should work together on this, but at the end of the day you have to ask yourself “Is the risk worth the benefit?”

Ask the Doc- Why isn’t my doc willing to hear out my ideas?

A reader wrote in about a concern she had with her dermatologist. Her concern is that her current treatment is causing more harm than good. She has tried to show him research studies that she has found about the issue, but he won’t read them. She has also tried to show the study to her PCP, but hasn’t had any success.

In the doctor-patient relationship, I believe it is very important that there is trust between both parties. Patients need to trust their physician’s judgement and believe that their doctor is looking out for their best interest. But this does not mean they cannot seek further explanation or information.Patients have a right and responsibility to be involved in their care and treatment, and advocate for themselves.

As a physician, I believe in addressing my patient’s concerns, even if they may seem trivial. I may not always agree with what my patients are saying, but I believe it is worth considering, even if it is to simply show my patients that I respect and care about their feelings. Doctors have extensive medical knowledge and training which guides their decisions, but that doesn’t give us permission to completely dismiss our patient’s opinions.

Although we may be open to our patient’s ideas, sometimes our hands are tied. We have to be careful about going off- protocol, as does anyone in any other profession. There are standards of care in medicine, and treatment plans constructed around evidence-based medicine. Deterring from these standards can cause major issues for a physician.If there were to be a negative outcome due to a physician going off label, or denying the recommended treatment, the physician can be held liable as well as feel the guilt of going against consistently proven methods and causing damage.

I think the real issue here is that the reader does not feel that the dermatologist is being receptive of her concerns. I would encourage anyone in this situation to make their doctor aware that they feel their concerns are being ignored. We sometimes get so focused on the plan we have in our head, that we don’t realized we’ve stopped listening. If the physician is still not willing to listen, then I think it’s not a bad idea to get a second opinion. At the end of the day, the doctor and patient should work together as team with one goal- providing the best care for the patient.

Misunderstanding

The other day, at the office, a receptionist told me a story about her recent emergency room visit. She was having a migraine, and when she came into her room, they asked for a urine sample. She had just used the restroom, and told them that she would be unable to give a sample. They told her they would not be able to give her any medication without the urine sample. She was so angry that she left and went to a different ER.

At the different ER, she was eventually treated and given a prescription for her regular migraine medication. She complained that every time she sees her neurologist, he only gives her seven pills. She understood that insurance would only pay for that amount, but she felt if he wrote for more, then she would just pay out of pocket for the extra. She gets more than seven migraines a month.

I explained to her that in the ER they took her urine to test for pregnancy. A lot of medications cannot be used in pregnancy, and tests such as CT scans can cause radiation and affect a growing fetus. She argued that she told them she was menstruating, to which I replied that sometimes women can have  bleeding that resemble their periods even while being pregnant.

I also explained that when pain is involved, sometimes they need to do drug screening to make sure the patient is not using recreational drugs, or abusing prescription medications. I told her that doctors have become suspicious when patients aren’t willing to give a urine sample because many drug-seekers use this tactic to avoid getting caught and obtain pain medications for recreational habit or to sell.

I then explained that the reason she only gets seven migraine pills is because it is an as needed medication to be taken only when she has a migraine. It is a quick onset medication to be used when the migraine symptoms begin so it will not worsen. If she is having such frequent migraines, it may mean that she needs to be on a daily medication to prevent migraines.

She agreed to see her neurologist, and that’s when I realized so much of the discord between doctors and patients is due to simple misunderstanding. By simply educating patients, we can empower them. So in an attempt to keep the air clear, I’d like to answer any general questions you may have. Send me your questions, and I will post them with my answer. Here’s your chance to “Ask the Doc”

Please keep in mind that I cannot offer medical treatment advice.

My Story: Part 5- Family

I also waited in telling my family, but for different reasons. My parents and two sisters live in a different state and I didn’t want them worrying about me. I knew they would want to come up and see me, and I lived in such a tiny place, and could barely take care of myself, I wasn’t ready to host them.

I told them a couple weeks after I was officially diagnosed, but I minimized it considerably. They naturally want to see me and I agreed to let them come a couple months later, after I had moved into my new place with my boyfriend.

When they came, it was like nothing was different. I had been on the high dose steroids for a couple months, and my energy and pain levels were almost back to normal. I was able to take a day trip out to the beach with them and spend the day walking around the city another day. The only thing that was slightly different about me was my shape. My mother had bought a couple dresses for me and when I tried to put them on, they wouldn’t zip up the back.

My family went back home with the sense that everything was normal, and I was fine. The lupus had resolved, and I was no longer sick. Part of me had wanted them to feel that way because I didn’t want to stress out my not so healthy parents, but another part of me wanted the attention, and wanted them to be concerned. I would feel jealous when they would go running to my sister when she would have a mild asthma attack, while I was suffering with something far more serious.

My family really didn’t understand until I came home for a week on vacation. I had been having serious fatigue and body aches. Usually when I went home on vacation, I was always out visiting with my friends, coming home only to eat with my family. Since I went to medical school and college in different cities, an hour away from each other, I usually did quite a bit of travelling and overnight stays. This time it was different. I stayed in bed all day, not even wanting to go out for special mother/daughter time.  I think it really hit my father when he saw me walking bent over because I was so stiff.

I still hide a lot of what’s going on with me, but I’ve learned that I don’t have to keep it all a secret. I can share my feelings and receive the support I need, without distressing my family. I don’t  need shut out the people who love me anymore.

My Story: Part 4-Friends

I waited a few weeks before I told my friends. I wanted to try and make sense of things first, and part of me felt embarrassed. I don’t really recall making a big deal of it and calling my friends just to let them know. I just brought it up casually when I had spoke to them, and usually it only came up when I wasn’t feeling well and had to explain myself.

I remember defending myself to a girlfriend about why I couldn’t go out to the club one night. She didn’t understand why I could no longer stay up til 3 in the morning dancing. Prior to lupus, I could go out all night, drive home late, or even crash at a friend’s place without thinking twice. As much as I tried to explain the fatigue and body pain, she felt like I was making excuses. She accused me of ditching my friends because I had a boyfriend now.

I wasn’t able to go out as much, even though I wanted to hang out with my friends. After declining several invitations, friends stopped inviting me out. It crushed me that no one understood and was willing to just come meet me and hang out locally. I felt very isolated at that time, and felt the only person I had to talk to and hang out with was my boyfriend. It was a really lonely time.

There were times that I wanted to ask for help, but my pride wouldn’t let me. I didn’t want to inconvenience anyone. Sometimes, I just wished they would call me, ask how I was doing,  ask if there was anything I needed. It felt like no one cared.

Maybe it was my own fault. I never really told anyone just how bad it was. I never really shared how I was feeling, or that I needed their support. I hid my pain, and my fears and anxiety. I pretended everything was okay, so how could I expect anyone to know what was going on inside of me?

I did gradually start telling more of my friends, and I started to get comfortable sharing what I was experiencing. But this led to another set of issues. I know my friends always felt uncomfortable, unsure of what to say. They were always offering impractical advice, telling me to just stay positive, or telling me how a friend of a friend of a friend has lupus and she’s doing just fine. Or they would say they would pray for me, or they were there for me, but that would be it. No follow up, no checking in.

Dealing with my friends was one of the hardest parts of being with diagnosed with lupus, and it made me realize I need to work on my communication more. I am still learning how to express myself clearly and be direct about asking for what I need and want.