Patient education is often an afterthought

I recently took call on the pediatric ward. Our team was caring for a young patient facing a new diagnosis of a chronic illness. In addition to stabilizing her symptoms, coordinating care with her new specialist, and managing her medications, I also see it as our job to make sure she and her family start to understand what is going on and what this diagnosis means for her.

How does this look currently? Patient education is often an afterthought. On a busy ward or in a hectic clinic, time spent on counseling and education often gets short shrift. Of course, this is in no small part due to the way our healthcare system reimburses care. But, I also think it is because we (physicians) aren’t taught to do it well, and we (the system) are not mobilizing our resources.

Typically, “patient education” consists of talking. A physician or nurse explaining the diagnosis and recommendations for treatment. Hopefully, this is done well and in a language the patient can understand. Here’s the problem. We know that people remember little of what they hear in the clinic or hospital. There are obvious reasons- things are not explained well, too much medical jargon, too much information at once, too much stress at the time the information is shared.

So, we give handouts. The internet has made this part easy. We have myriad handouts on thousands of topics at our fingertips. But, there’s a disparity here. The vast majority of available information is in English and assumes a high literacy level.

The day I came on service to help care for this patient I noticed a handout describing her diagnosis sitting on the bedside table. So, we had gotten this far, which is great. But, it was in English. Her parents don’t speak English. The team searched the typical sites for a better option and came up empty. Here’s where the better way starts. . .

What if the simple fact of receiving a diagnosis- say diabetes, cancer, or multiple sclerosis- set in motion a series of automatic events. What if short videos on this patient’s condition were made available to her on a laptop or iPad during her hospital stay? What if a text was sent to her mom’s cell phone with a link to an e-patient community that could provide support and information? What if I could ask my EMR to print out a handout in the patient’s language and specify that it be modified to the appropriate reading level? What if a week after they went home this family was automatically sent a series of questions that assessed their understanding of medications or recommended care and their primary care doctor was emailed regarding any significant areas of concern?

This is not just all pie in the sky stuff. I attended the Medicine X conference recently. The conference addressed how “emerging technologies will advance the practice of medicine.” It confirmed for me that we already have the technology to provide this kind of care. There are smart people who have thought of all of this and much more. There are patients who are eloquently demanding that we do better. There are physicians who are leading the way by creatively integrating new media into the way they practice medicine.

But, I have to say this. What I saw this weekend felt worlds away from what I see day to day in my clinic just down the road. And it’s not because doctors don’t care or people don’t want to do better. I work with excellent physicians and nurses who care deeply for their patients. But, physicians everywhere are working within a system that doesn’t support their efforts to partner with patients and give better care.

The kind of care I describe above, the kind of care that is possible, is what all patients deserve. This is what all patients need- regardless of their ability to read, or what language they speak, or how much money they have, or which doctor they see. And, this is what healthcare needs. It’s better for patients, for providers, and for the system. How many re-admissions (and the associated costs) could be saved simply by ensuring that patients understood their condition, how to dose their medications, and had access to their own care plan?

So, I want to know what it will take to scale Medicine X to the masses. I want to hear more about how we will leverage the knowledge and technology we already have and use it for all patients. Perhaps things will change when we have research suggesting that it is cost effective to provide better care. Perhaps things will get better when we start teaching medical students about the new literacies early in their training. I am excited to be a part of all of this.

If our patients don’t really understand their diagnosis, if we don’t make sure they are partners in their treatment, can we really call it healthcare?

Heidi Roman is a pediatrician who blogs at My Two Hats.

Comments are moderated before they are published. Please read the comment policy.

  • carolynthomas

    Thanks for this excellent overview, Dr. Heidi. The example of handing out English brochures to people who don’t speak English would be hilarious if it weren’t so pathetically inappropriate. Such practice speaks volumes about the importance (or lack thereof) assigned to patient education and hospital discharge planning.

    For example, in a report called “Snapshot of People’s Engagement in Their Health Care“ published by The Center For Advancing Health, we learn that 91% of chronically ill patients did NOT receive a written plan of care when they were discharged from the hospital.

    But after reading your post, I now wonder how many of the 9% of those lucky patients who DID receive a comprehensive discharge plan were actually able to read it.

  • azmd

    Ms. Thomas accurately remarks that our current healthcare system places a low priority on patient education and discharge planning. However, I do think we need to be careful to avoid blaming our frontline workers for the inadequacies of a broken system. All of us who work directly with patients recognize that patient education needs to be better and wish our system would support improvement.

    Dr. Roman’s piece clearly states that her team searched for alternative educational materials for a non-English speaking family, and were not able to find any. She proposes some intriguing ideas for innovations in patient education, which should be looked into. She clearly asks for ideas about how we could more the process forward. Remarking again on how ridiculous it is to give English instructions to a non-English speaking family does not move the dialog forward.

    Expecting doctors and nurses to fix a broken system all on their own is not realistic, but it seems to be the underlying belief of many commenters who weigh in on these pieces. Apparently the expectation is that we are supposed to stay up later at night than we already do, or take more unpaid time from our families than we already do, in order to provide better care in a system that is not willing to pay for it.

    I think the solution is quite simple. There needs to be better reimbursement for time spent with the patient, and there needs to be more recognition of the need to pay clinical staff for the administrative time required to improve our delivery of healthcare services. Patient education takes time, whether it involves creating a patient handout or talking with a patient, or sitting in meetings with the EMR vendor to see if patient education videos can be somehow incorporated. Expecting clinical workers to volunteer their time to make these things happen is not realistic or reasonable.

    • carolynthomas

      I agree that reimbursement continues to be a factor in poor patient education. This is unfortunate and short-sighted, particularly in discharge planning, as we know that poor discharge plans results in higher hospital readmission rates. But I don’t think anybody is suggesting here that doctors and nurses should somehow be staying up late at night volunteering to translate patient education brochures. It does however remain the front line health care professionals (far more than hospital administrators and others who are NOT doing direct patient care) who are in the best position, certainly in Dr. Heidi’s example, to even notice how inappropriate it is to hand out an English brochure to non-English speakers in order to tick that ‘take-home brochure’ box on the discharge form. It IS ridiculous indeed that this is ever the reality in her hospital or in any other health care facility where it’s going on.

      Another small example: I worked for a hospital-based palliative care/hospice program for many years where our excellent bereavement publication “10 Things To Know About Grief” was available in English, French, Chinese, Korean, Spanish, Tagalog, Punjabi, Persian and Vietnamese. These translations were not done by doctors and nurses working well into the night for free. They happened because our front line workers (docs, nurses, psychologists, social workers, chaplains) flagged a need for something other than their English-only education materials and directly communicated that need to administration.

      • azmd

        The suggestion is actually that front line workers take the time to notice deficiencies in patient education (and other aspects of care delivery) and suggest solutions to administration. A reasonable suggestion, on its face, but I can assure you that typically, in order to accomplish it, a front line worker needs to take his or her own personal time to think through the problem, devise a solution, put that solution in writing, figure out which member/s of administration need to receive the communication, and then send it to them. And then follow up, sometimes repeatedly.

        As a front line worker in a public hospital who is very interested in improving our processes, but is not paid to do administrative work, I can promise you that every minute of the day for which I am paid is allocated to providing direct patient care at a pace that typically does not allow me time for lunch, sometimes not time for bathroom breaks and most definitely not time to compose and send emails to administration and then follow up on them. Those activities, are, in fact, carried out on my own time, late at night, very early in the morning, or most typically on the weekends when I have had a chance to recover from my exhaustion. I can tell you from the times that other doctors and nurses are sending emails about our processes that they are doing the same thing.

        So, although no one is suggesting that we stay up late translating patient brochures, the fact is that you are indeed suggesting that we stay up late trying to address deficiencies in our health care delivery system. Because that is, quite frankly, when we have the time to do it. And it’s our own time, not time for which we are getting paid, and obviously not time that is ever really appreciated by a public who seems to wonder only why we aren’t doing even more.

        I won’t even begin to attempt to address the separate issue of administrators who feel that “doctors are paid to medicate the patients, not worry about the rest of the hospital,” and so are not particularly receptive to suggestions from front-line workers on how patient care delivery could be improved. That was an issue at my last job, although blessedly not at my current one.

  • Steve Wilkins


    There’s a great quote which reads “the problem with communication is the illusion that it has occurred.” This goes in spades with respect to physician-patient communications – whether in the hospital setting as you describe…or in the office-based setting. The problem in not that physicians (and other providers) don’t care (because most assuredly do care) …or that they lack the time. The real problem is that providers often don’t have the know how and tools to effectively communicate with patients. I am convinced that even with more time, providers would still have problems communicating with patients is ways that are relevant, useful and understandable.

    In both the hospital and office setting, providers tend to over estimate the amount of information they provide patients…and underestimate the patient’s desire for information. Even more fundamental is the lack of concord between patients and physicians concerning their diagnosis, its severity and the best treatments. Absent that agreement, whatever providers say will have little impact on a disbelieving patient. To reach such patients, you first have to understand where they are coming from…you have to understand their story – their health beliefs and previous have to know something about what motivates the person behind the disease…and that just doesn’t happen in health care today.

    I too attended Medicine X this year. I also attend Medicine 2.0 at Stanford last year where Dr Abraham Verghese gave an excellent presentation on the “power of touch” and the need for more interpersonal caring in stark contrast to conventional wisdom which calls for us to throw more technology at the problem. Health information technology alone will not fix the problems you describe. What is needed are interventions design to introduce patient-centered communications techniques into physician-patient interactions.

    Steve Wilkins, MPH

  • Kathleen (Kathie) Clohessy

    I am a former Pediatric Oncology RN and a patient with a chronic illness. These two disparate realities have allowed me to experience the system from both sides of the equation, and I can tell you that in the real world two and two almost never equals four.

    When I was a nurse, I thought the answer to patient education was hand-outs, too. Written instructions, videos, cell phone apps…like most health care professionals I thought that these were the things that would turn the clueless, terrified,overwhelmed patients and families I worked with into knowledgeable collaborators–families who were compliant with their child’s treatment regimens and made better decisions about their health. But time and again I saw these elaborate educational tools fail, and now, as a patient, I am convinced of what I only suspected back then–the simple fact that.none of this stuff–at least none of it on its own–works.

    Sick patients don’t just need more “information,” and they certainly don’t need more hand-outs. Every time I get my prescriptions filled I receive a veritable stack of printed sheets of paper detailing every conceivable side effect of the medicines I take. And like every other person with a chronic illness I know, I take them home in the bag with my medicine, take the medicine out, and immediately throw the rest of it away. If there was any important information there I would never see it…But after 120 months of getting the same print-outs over and over at my pharmacy and never once during that time hearing a human voice telling me “this stuff is important; read it..” what the heck does the system expect?

    What patients need is HUMAN follow-up..and not just after they are discharged from the hospital. The health care needs of Americans are changing-and changing rapidly..We have fewer people facing critical illnesses and more and more of them living with chronic conditions related to life-style and aging and generally poor health. Pieces of paper are not going to help those people…nor is least not much.. But human interaction…even a little bit of it…CAN.

    Want to know how to help your patients? Hire a nurse or a PA to work from home 2 hours a night two or three days a week. Have her make follow up calls to your patients 1 day, 3 days and 1 week ( or whatever schedule is appropriate by diagnosis and patient demographics) after an office visit or hospital discharge and ask them how things are going. Any side effects from that new medicine we gave you? (What new medicine?? Are you feeling nauseous? (Is that from my medicine? I didn’t know that!) Are you urinating OK? ( No…I haven’t gone since yesterday) Patients don’t remember that long list of side-effects..but YOU know what they are and YOU know what’s important. A little pro-active medicine-even once removed- goes a long, long way.

    Employing people for this kind of follow-up is expensive, I know. But so is technology. The main difference between the two is that while one of them gives you lots of pretty flow charts and data to make you think you got your money’s worth,the other one actually works.

    • azmd

      This is an absolutely wonderful idea, and probably exactly what should be done. But who will pay for it? Not the patients, who I am sure would be outraged to receive a bill for telephonic followup. There are currently no procedure codes that allow billing for telephone contact with a patient, so neither CMS nor private insurers will pay for such calls. As with many ideas for improvements in the healthcare delivery system, this one involves more hours of personal contact with a provider, something our current system has made quite clear it has little interest in paying for.

      • Kathleen (Kathie) Clohessy

        If the system is broken it is partly the fault of providers who believe that it cannot be fixed. Saying that “the current system has no interest in paying for”.. something does not-or at least should not -mean that it cannot be done. Many doctors today are moving away from the third party payer system entirely and setting up their own system of reimbursement. ..these doctors can experiment with and role model alternative practices that might be applicable to the larger whole some day.

        America has the most expensive, the most corrupt and most ineffective system of health care delivery in the free world. It absolutely MUST change…and the time to start is now…

        PS..I disagree about patients not wanting to pay for this, BTW.although they should not need to do so. They are already paying astronomical premiums for lousy care..why not pay a little bit more for something that works?

        • azmd

          Sounds like we are both in complete agreement that the answer is for doctors to start experimenting with other practice models than third-party payment, which many are. Those doctors have a lot of freedom to offer their patients higher-quality, more effective care and to use innovative care-delivery practices. We should be supporting them, not branding them as “greedy.”

      • coolincambridge

        Right – and so more arguments in favor of single-payor. A health insurance industry that puts shareholder before patients is immoral in a civilized society.

    • coolincambridge

      Some of these calls, first screen, could be made by relatively inexpensive employees – but would yield a huge pay-off. Follow-up in less extreme cases could keep them from becoming extreme cases.

  • Martine Ehrenclou

    Great post with great questions. I too was at the MedicineX conference. In addition to what you are suggesting, how about patients starting to take some responsibility for understanding their diagnoses and treatment plans, such as asking questions? This should be part of every patient’s toolkit; ask questions, ask for information, get informed. If the patient doesn’t speak English, there should be a good interpreter available as well as the suggestions you made such as videos etc.

  • Martine Ehrenclou

    Great post with great suggestions. I too was at the MedicineX conference. How about in addition to medical providers offering patient education that the patient asks for information about diagnosis and treatment plan. Patients need to become active participants in their care.

  • Heidi Roman MD

    Really interesting points, all. Excited to see the post generating dialogue. A few follow-up thoughts.

    -I completely agree that increased patient input into improving education efforts is absolutely essential. We increasingly bombard patients with information, but rarely ask whether it was effective. Neither hand-outs nor technology are a panacea, but rather tools that must be used by human providers in a way that makes sense.
    -To that point, I see a great need for outcomes research in this area (ideally including patients every step of the way- from study design to assessment of results).
    -I love Ms Clohessy’s suggestion of after hours phone calls to assess how patients are doing and answer questions. This is not far-off from a program we have for discharged NICU babies. They are visited by an NP for an extended home visit and this time is reimbursed. Ever optimistic, I strongly believe that as we continue to build data showing that better, patient-centered care is not only better for the patient, but that it saves money, that we will see improvement in the way that our time is reimbursed.

  • coolincambridge

    Isn’t this all basically common sense? It’s up to every practice to look at how they do business and to start utilizing social media and other new technologies to engage patients more effectively – and it doesn’t have to be all or nothing. A little bit goes a long way. Patients want CARE!

Most Popular