doc w/ Pen

journalist + medical student + artist

Category: Clinical Work

Patient Education: It Can Make All The Difference

I volunteered this week at the free clinic where I am a Spanish medical interpreter. I was reminded of a very important lesson: the need for patient education.

As I have mentioned previously, I am very interested in endocrinology and diabetes (both the research and clinical aspects). The Latino population in general is at a higher-than-average risk for diabetes, so a large proportion of the patients with whom I work have this disease.

A diabetic patient came in with high daily blood sugars as well as a high HbA1c (the test that monitors blood glucose over a 3-month period). The physician who patient saw was somewhat frustrated at the fact that his diabetes was uncontrolled, because the patient was on a high dose of NPH insulin.

So the doctor probed the patient. Did he ever skip doses of his meds (including the insulin)? Was he taking his insulin twice a day as prescribed, X units in the morning and Y units in the evening?

Turns out that the answer to the second question was “no.” And not because the patient was trying to be noncompliant. He was taking all (X +Y) units of insulin once a day, because he had previously been on Lantus. He didn’t understand that Lantus is a long-acting insulin, which means you can take it only once a day, while NPH is intermediate acting, which means you have to take it twice a day to appropriately control your sugar. (The reason he had been switched from Lantus to NPH was that the clinic pharmacy had run out of Lantus, an unfortunate occurrence which sometimes happens given that all the medications at this free clinic are donated.)

When the doctor explained this clearly, it was like a light bulb went off for the patient. He said he just didn’t know, and thought that it was OK to keep taking the insulin the same way he had been taking it before. He agreed to make the change right away.

It is true that sometimes patients are just noncompliant, and that leads to uncontrolled conditions. But other times, they simply don’t understand the (often very complicated) instructions they receive. Language and education barriers make this all the more difficult. And so it is the responsibility of the physician to make sure the patient does understand, so that he/she has the tools to control the disease, whatever it might be. A good lesson to remember as I make my way toward a career in medicine.

Getting a Patient’s Perspective

Note: I suggest not reading this post if you are eating, or have recently done so. Not that I’m trying to gross anyone out, but this is a medical blog after all, and some medical stuff is, well … you know.

Self-diagnosis: It’s a common phenomenon, one in which a little knowledge is a dangerous thing. When you take Psych 101 in college, for example, suddenly having a bad day or two makes you think you are schizophrenic or bipolar. And when you are a pre-med, every cough, sneeze, or tickle sends you to Google, which inevitably yields the most rare and horrible diseases as its search results.

Then again, sometimes The Google Doc is right.

It was in my case last week, when, ironically, I wound up with one of the very bacterial infections I wrote about in my recent post “The Kinky World of Bacterial Sex.”

It all started with some vertigo and nausea. When that didn’t go away after a few days, I headed for a local urgent care center, where the doctor there diagnosed me with a sinus infection and gave me a prescription for amoxicillan. I’m still not clear on whether that diagnosis was correct, because I didn’t really have any sinus symptoms … but then again, I’m not a doctor. I started taking the antibiotic. Almost immediately, I started having diarrhea. But I was out of town visiting a friend, so I shrugged it off as related to a temporary change in my diet. After a couple of days, though, when my body was wracked with horrible abdominal pain, I admitted something was not right and called the urgent care center. The doc there (a different one than I had seen before) told me to stop taking the amoxicillan. But the pain and diarrhea only got worse, so I went back to urgent care when I got home from my trip. Blood work and abdominal CT (to rule out appendicitis) were normal. But a stool culture revealed exactly what Google had suggested when I first looked up the keywords “amoxicillan” and “diarrhea”: Clostridium difficile, or C. diff.

When that showed up as a possible diagnosis during a Google search on my iPhone, I attempted to be rational and dismissed it as the worst-case scenario. My symptoms could also have been side effects from the amoxicillan itself, and in my attempt to not self-diagnose, I believed that’s what they were. But it appears that my worst-case scenario came true.

Well, not exactly. My association with C. diff from writing my recent blog post was that it’s a nasty superbug, one that is resistant to antibiotics and very difficult to treat. That is true, in some cases. But certainly not always. Usually, you can treat it with the antibiotic Flagyl, or if that doesn’t work, Vancomycin. In some cases, C. diff infections require hospitalization and IV antibiotics. But that’s unlikely in my case, especially since I have not recently been in an environment (such as a long-term care facility or a hospital) where the superbug strains of C. diff tend to thrive.

The irony of contracting a C. diff infection after writing about it on this blog certainly does not escape me. Neither does the irony of switching roles from confident pre-medical student to sick, scared patient.

Before I received a definitive diagnosis yesterday, I was frustrated and scared. I didn’t know what was wrong with me. I was in a lot of pain. I couldn’t keep food down. My normally active and productive lifestyle had been reduced to a cycle of sleep – drink Gatorade – go to the bathroom – repeat. A friend suggested I change my perspective and try to look at the experience as a learning one, one in which I could gain a better understanding of what it is like to be a patient. Because one day, I will be treating patients, and if I have a good understanding of what it is like to be one, hopefully I will be a better and more compassionate physician. So I started paying attention to how the practitioners were treating me, trying to figure out, from my own reactions to their behaviors, what kind of doctor I wanted as my own doctor. And hence, what kind of doctor I wanted to be to others. I learned a great deal from both doctors and their support staff.

I remember the first physician I saw at the urgent care center. While she was nice enough (I guess), her demeanor and body language suggested that she was in a hurry and that she was just trying to get through our visit. She didn’t explain anything about my diagnosis, or the medication I was to take. I understand that physicians these days have a huge patient load and are very busy. But I think there are ways to take just a minute or two to help assure a patient that he or she isn’t an inconvenience, which is how I felt. The second doctor I saw at the urgent care center was much better. She was more thorough in terms of her interview with me, and she acted like she cared about my well-being. She had concern and compassion that I could see, hear, and feel. I could tell she was busy, too, but she made sure to tell my why she was ordering an abdominal CT, why she wasn’t giving me any medications right then and there, and what might help me feel better until I had a diagnosis and course of treatment. She also made a point of asking me multiple times if I had any questions.

But obviously, it’s not just the physicians who comprise a treatment team. There are nurses, techs, receptionists, and other support staff. I tried to learn from them as well. The tech who took my vitals and drew my blood on my second visit to urgent care was amazing. I’m not always good with names, but I remember hers – Melissa. She made me feel at ease, in part by being calm herself, in part through humor. I was somewhat dehydrated (from the diarrhea), so my veins were difficult to find when she was trying to draw blood for a CBC. Melissa was very patient, and rather than hurry and stick me multiple times, kept palpating my arm until one popped out. I was very grateful for that.

And then there was the radiology support services lady at the hospital where I went for my abdominal CT scan. She was amazing. I had never had an abdominal CT before, so had not had the pleasure of the lovely barium contrast drink they give you (and they give you a LOT of it). I was already feeling sick, and the bitter-off taste of the clear liquid wasn’t helping. The woman at the front desk walked through the waiting area and asked how the drink was going down. I told her not so well, and she asked whether it would help if I had some juice to help wash it down. When I said “yes,” she replied, “Well, I’ll go see if I can scrounge some up for you.” Her kindness – and the apple juice she found – made all the difference in the world.

Sometimes you can’t cure someone, but you can bring them a little bit of comfort. That’s the kind of doctor I want to be.

Caring for the Family Is Part of the Job, Too

family careLiving with my mom, who is a home health care hospice nurse, I am learning all kinds of things. As she was relating her “adventures” the other day, something dawned on me. And while this may sound obvious, it is something that I believe many physicians forget to consider. But it is something I believe we should consider, on a daily basis. I know that after this realization, I will be.

As medical practitioners, it is key for us to consider a patient’s family, in addition to the patient’s own well-being, illness, and treatment.

Why? For one thing, the family helps create the environment in which the patient lives, which can definitely (and sometimes adversely) affect the patient’s well-being, illness, and treatment. An example from my mom’s experience: she had a patient who was declining, health-wise, and had required a long visit. The patient’s caregiver, another family member, mentioned that one of the patient’s sons was supposed to come visit later that day. But the caregiver was concerned about this visit, and having to relay the news his mother was declining, because the son had serious mental health issues. My mom asked whether it was possible that the son might hurt someone, or himself … and the caregiver said, basically, I’m not sure. That impending visit – clearly a family issue, and not a specific patient health issue – might have put my mom’s patient in a dangerous situation. So my mom brainstormed with the caregiver, and they decided to cancel the visit that was supposed to happen. My mom also called one of her hospice’s social workers to help with the situation. (Another lesson: it’s important to work as a team, and to know what your resources are.)

In hospice, and in other scenarios (especially ones involving the elderly, and long-term, chronic conditions), family members are often the ones giving care – administering medications, that sort of thing. While the family members might not even have a high school diploma, they are being asked, in essence, to act as nurses or nurse’s aides for the patients. So it is very important to take the social and family situation into account, and make sure the family members are adequately educated about the patient’s care.

With other diseases, such as diabetes, the family environment can very much affect the patient’s condition. For example, if the family members often cook fried foods, and incorporate very few vegetables or healthy foods into their diet, that is a serious problem for maintaining the patient’s blood glucose level, as well as cholesterol, blood pressure, and other common comorbidities of diabetes. Then you wonder why the patient’s hemoglobin A1C comes back at 10 … so understanding the social situation, again, is imperative.

This does, of course, take some effort. And effort requires a bit extra time. Which, of course, is always in short supply for physicians. But I believe that it falls in the category of preventive care, which can save time, money, and a patient’s health in the long run. So isn’t it worth it?

Health Literacy: My New Mission

In my last blog post, I wrote, in general terms, about the freelance work I am doing for Joint Commission Resources. I mentioned that not only am I getting paid, I feel that I am getting paid to learn. In this post, I want to share some of the things I have been learning.

One of the projects I am working on is continuing education PowerPoint presentations for nurses. My role is to write quiz questions (which is really fun, but challenging as well), develop new lesson objectives, and adapt the lessons as needed to meet updated Joint Commission standards. Which, of course, requires me to closely read (scrutinize, really) every single slide of every single lesson. Originally I thought this task would be tedious and boring. On the contrary. I have learned some very interesting things about health care, things that I honestly am interested in incorporating into my future career as a physician-scientist.

The lessons I have been working on lately have dealt with health literacy and patient communication. As a Spanish medical translator, I know how critical it is to have trained translators, and to ensure that medical information is presented in a manner that every patient can understand. Quite often that means that the physician needs to tailor his or her explanations and demonstrations to a person’s level of education, for example.

But the concept of “health literacy,” at least in those specific terms, was new to me. The definition of “health literacy” on the U.S. Department of Health and Human Services Health Resources and Services Administration‘s Web site is:

“The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.”

OK. We all know that doctors sometimes present complex information that doesn’t seem to make much sense unless you’ve been to medical school. But even basic health information isn’t so basic if you don’t speak English, don’t read, or have some cognitive impairment, for example. Or if you are under stress (which happens a lot if you are sick!). That’s where it becomes necessary for health care practitioners to engage with patients in a way that the patients can understand what is going on. That might mean using a translator (which is what I do), using visual aids, or other methods. There are many tools and strategies that I didn’t know about – tools I found very interesting, and potentially useful for me in the future.

AskMe3-logo-NPSF-notag_160pxOne of those strategies is called Ask Me 3™, a campaign developed by the National Patient Safety Foundation. This is what the NPSF’s Web site says about the program:

“Ask Me 3™ is a patient education program designed to promote communication between health care providers and patients in order to improve health outcomes. The program encourages patients to understand the answers to three questions:

  1. What is my main problem?
  2. What do I need to do?
  3. Why is it important for me to do this?

Patients should be encouraged to ask their providers these three simple but essential questions in every health care interaction. Likewise, providers should always encourage their patients to understand the answers to these three questions.

Studies show that people who understand health instructions make fewer mistakes when they take their medicine or prepare for a medical procedure. They may also get well sooner or be able to better manage a chronic health condition.”

Encouraging patients to focus on these three basic – but key – questions engages patients in their care in a way that strips things down, removes some of the unnecessary complexity, from the situation and hopefully empowers them to make those “appropriate health decisions.”

On the Ask Me 3™ Web site, there are also links to resources to help in other ways. One way in which patient encounters can get out of hand – from a complexity standpoint – is through word choice. So the NPSF has a PDF document entitled Words To Watch (in both English and Spanish) which lists difficult words – and then simpler, but appropriate, alternatives. For example, rather than ask whether someone’s pain is “intermittent,” you could ask whether the pain is “off and on.” Definitely something to think about as I venture into the health care field myself, eventually.

But this information is not just for my future. As a Spanish medical translator, I hope to bring some of these tools and techniques into the free clinic where I work. Because really, nearly, if not all, the patient population at the clinic has low health literacy. And that can reduce the effectiveness of medical intervention.

But it is not only “LEP” – limited English proficiency – patients who struggle with health literacy. It is important to remember that there are many groups of people who are at risk for low health literacy, and also that even people who have high incomes and are educated can have low health literacy. In other words, health literacy can be an issue for anyone.

Here are some interesting, perhaps frightening, statistics about health literacy from the NPSF:

  • The health of 90 million people in the U.S. may be at risk because of the difficulty some patients experience in understanding and acting upon health information.
  • Literacy skills are a stronger predictor of an individual’s health status than age, income, employment status, education level, or racial/ethnic group.
  • One out of five American adults reads at the 5th grade level or below, and the average American reads at the 8th to 9th grade level, yet most health care materials are written above the 10th grade level.
  • Limited health literacy increases the disparity in health care access among exceptionally vulnerable populations (such as racial/ethnic minorities and the elderly).
  • According to the Center for Health Care Strategies, a disproportionate number of minorities and immigrants are estimated to have literacy problems:
    • 50% of Hispanics
    • 40% of Blacks
    • 33% of Asians
  • More than 66% of US adults age 60 and over have either inadequate or marginal literacy skills.

I don’t want my patients to ever leave the exam room not fully understanding the answers to the three questions that the Ask Me 3™ campaign promotes. And knowing that now, before I even get into medical school, is pretty amazing. Like I said, I’m getting paid to learn. It’s a pretty sweet deal, if you ask me.

Pay For Performance: A Medicare Failure

medicare mazeI’ll be honest. When it comes to Medicare rules and regulations, I, like so many Americans, am a little lost. The whole system is incredibly complicated. But I learned something rather disturbing about this complex system this week at the clinic where I volunteer.

I was talking with an attending physician about a patient who had various comorbidities (multiple conditions that interact with each other). This patient was not doing well. The physician told me that under Medicare, the doctor caring for that patient would be in trouble. Why? Because the government has, over the last several years, been instituting what is called P4P – Pay For Performance – measures. These measures reward doctors, hospitals, and other facilities for patients who meet certain “quality metrics” – i.e., do well – and penalize them for patients who do poorly.

On the surface, this might seem like a good idea. Because the goal is indeed a good one: improve quality of care for Medicare patients, while reducing costs and preventing unnecessary expenses. But, it seems, these measures are coming at a cost to some patients who have complicated health issues or a poor prognosis.

In a 2009 opinion piece published in the Wall Street Journal (“Why ‘Quality’ Care is Dangerous”), the authors referenced a study from California in which “doctors dropped noncompliant patients, or refused to treat people with complicated illnesses involving many organs, since their outcomes would make their statistics look bad.” Another study these same authors talked about “indicates that report cards may be pushing Massachusetts cardiologists to deny lifesaving procedures on very sick heart patients out of fear of receiving a low grade if the outcome is poor.”

Clearly, this cherry-picking of patients is not what the Medicare rules are intended to encourage, but this is what is happening, in some situations. As I said, these regulations have a good intent. But for complicated cases, they seem to be worsening patient care, not improving it.

Do I have a solution? Unfortunately, no. But I don’t think this is the solution, at least in a broad application. One option, perhaps, is to make exceptions for those more complicated cases. But that seems like a logistical nightmare – where would you draw the line?

When I have talked with doctors about my own desire to enter the field of medicine, many have referenced increasing regulations – both from the private and public sectors – as complicating their ability to properly care for patients. Do we need to control costs? Yes. Do we need to improve care? Yes. But not by faulting practitioners for cases in which patients don’t adequately improve. And not by encouraging practitioners to drop patients who aren’t likely to see that improvement in the near future. While the goal of P4P may be a good one, the outcome seems to be lose-lose, for both patients and doctors. And if both parties are big losers, then a set of regulations that aim to improve care by issuing report cards receives, in my book, a big fat “F” itself.

The Ups and Downs of Doctoring

Being a doctor can be incredibly rewarding. At the free clinic where I work as a Spanish medical translator, I have seen some of those rewards – hypertensive patients whose once-elevated blood pressure comes down to a normal range, or diabetic patients whose blood glucose levels are finally controlled after months of trying to find the right combination of medications.

But being a doctor can be incredibly frustrating, too. I was a witness to that this week during one of my translating sessions.

syringeA patient came in with very uncontrolled diabetes, and a hemoglobin A1C (a test that measures blood sugar levels across three months’ time) of above 12. For diabetic patients, you try to get that level to somewhere around 7, so this level was not good. Not good at all. The patient had been taking a combination of pills to treat the diabetes, but clearly that was not enough. So the doctor said it was time to start insulin. The patient balked, and asked whether there were any other pills, any other methods, they could try. The patient promised to eat better, to exercise more. But there was no way to come down from that high of a hemoglobin A1C level without insulin, the doctor explained. Insulin was necessary at this point.

But the patient would have none of it, even when the doctor explained all of the possible effects of maintaining a high blood sugar level for a long period of time – eye problems that can lead to blindness, kidney dysfunction that can lead to dialysis, persistent infections, higher stroke risk, heart issues, extremity amputations.

As I was translating, I tried to think of the situation from the patient’s perspective. Having to inject yourself with medication every day, probably for the rest of your life, is a scary prospect. No one wants to have to do that. On the other hand, all those diabetic complications are terrifying. I found it difficult to understand why someone wouldn’t want to do everything possible to prevent them, even if it meant a daily injection. But as a translator, I am an intermediary, a conduit, so I kept my own thoughts out of things.

Clearly, the physician was frustrated too. She was doing her best to provide the best care she could, and the patient was refusing to do what was necessary to maintain a healthy body. Although the doctor tried her hardest to persuade the patient, the patient continued to refuse the insulin. And the patient had the right to make that choice.

I hope the patient has a change of heart and decides to take the insulin, I really do. I know the doctor I was working with does, too. But in the end, I think that as a physician, you have to realize that you can’t fix everything. You can’t force anyone to do something they don’t want to do, no matter how beneficial it might be for them. So at some point, you have to let it go. That’s not to say you don’t revisit the issue on a future visit. No, I think doing that is entirely appropriate. Maybe eventually, the patient will change their mind. What I mean is that people will make their own choices, and sometimes there is nothing you as a physician can do, regardless of all your knowledge and education and degrees, about those choices. Do you stop caring? No, certainly not. But I think you have to guard against internalizing such situations and taking them personally. And while you do that, try to maintain a glimmer of hope that maybe, next time, they will come around.