Patient Centered Care - A Primer for Patients

I am the Lorax, I speak for the trees… and I would like to discuss what we, as patients, are up against in the brave new world of HIT.

One of the big problems with patient centered care is that so many people (potential patients) are not aware of what is at stake if they don’t take an active role in managing their own health and healthcare. It is human nature that we do not think about that which is not actively clamoring for attention in our busy lives. When we are healthy, we don’t think about getting baseline data about our body’s normal status – and if we do, it’s inconvenient, expensive, and time consuming. We also don’t think clearly about the chances of bad health outcomes in many situations.

For example, as I am a “woman of a certain age,” my primary care physician has been recommending for years that I get a baseline bone density scan done so that we will know if there is any reason to suspect an alarming trend with my skeletal integrity. However, my insurance (which is comprehensive and excellent in many other ways) will not pay for a bone density scan unless and until I am diagnosed with osteoporosis – when it is too late! Wouldn’t it make more sense to do a baseline, and then check again in a few years, just to see what’s happening? Why wait until I break something and require hospitalization, surgery, and/or rehab? It might not happen, but my bones will get thinner with time, and there are things that can be done to slow the process or keep it from becoming a problem if we know how fast it is happening.

On the other hand, I do get a yearly mammogram, even after the U.S. Preventive Services Task Force (USPSTF) recommended spacing them out to every other year absent indications of higher risk. I asked my doctor about that, and she said that it was just Medicare trying to reduce costs, so I continued with the yearly schedule – to my everlasting regret! During my annual appointment a few years ago, the scan showed some microscopic calcifications clustered more densely than considered normal and I was subjected to a sequence of events that still make me feel like I got run over by a bus. First, serious medical professionals told me that there was a small (vanishingly small, it turns out) chance that this was a pre-cancerous condition and that a biopsy was recommended. I was set up with an appointment with a surgeon and scheduled for an ultrasound guided core needle biopsy. To be fair, I was given the option of ‘keeping an eye on it,’ but was strongly advised to have the biopsy.

The procedure “went well,” according to the surgeon, and the nurses were terrific, but it was the single most horrifically painful experience of my life to date. The results were negative for any abnormality, but because it is now in my medical record that I had the procedure, I am considered higher risk, requiring MORE frequent mammography… As a wiser medical consumer, I will now assent to the annual mammogram, but if the ‘chance’ that an ‘abnormality’ is cancerous is less than 75%, I am going to opt to wait at least 6 months to see if another image shows any changes.

OK, so why am I blogging about my own minor medical horror story? Well, because it’s part of my job to consider the impact of technology on people. I am not a Luddite: I have an IT degree and have worked in the industry most of my adult life. I have watched with delight as the Internet came into being, I love my Smartphone and can’t imagine going back to the days when I didn’t have the world at my fingertips. However, the flip side of having massive technological interventions available is that they tend to get used more than is absolutely necessary. The old adage that says, “When you have a hammer, everything looks like a nail,” holds true in medicine, especially when using the technology means justifying and defraying the steep purchase price. On the other hand, we are now living in an era where we are beginning to understand that more is not always better, that watchful waiting is a viable option in some – if not most – medical situations, and, most importantly, that the patient’s quality of life and attitude are at least as important in choosing a course of treatment as the physician’s recommendations. I don’t expect that everyone has to get a medical degree, but I do think that every healthcare consumer (that’s EVERYONE, sooner or later) should be willing and encouraged to be proactive with that care. How? Here’s a list:

  • One way or another find out what is in your medical record. If your primary care provider has a portal, sign up and use it. If they don’t, ask (in writing) for a copy of your record, preferably in electronic form (it is your legal right to get it).
  • Verify that your history is complete and correct, including family history and immunizations. Submit corrections in writing for any errors.
  • Know what your lab results are and what they mean.
  • If you aren’t married, make sure that you have a medical advocate - someone who has the legal right to speak for you if you can’t speak for yourself.
  • Include advance directives and contact information for your medical advocate in your medical record.
  • Follow doctor’s orders, with the following caveats:
    • Ask what will happen if you don’t – and remember that a 2% chance of something happening means that there’s a 98% chance that it won’t;
    • Ask if there are alternatives;
    • Always ask about risks and side-effects of recommended treatments and procedures, as well as prognosis for your condition;
    • Ask what it will cost – not just you, but your insurance company, too. You may not get a definitive answer, but the more we ask the question, the easier it is going to be to get the answers.
  • When in doubt, go with the odds and err on the side of less intervention.

Remember, it’s YOUR body and YOUR life, and your medical care providers work for you. You should insist on having all the facts. If you wouldn’t let a plumber come into your home and experiment with the pipes and faucets without telling you in advance what he plans on doing, why it is necessary, how long it will take, what the end result is supposed to be, and how much it’s going to cost, why would you let a doctor do it to your body?