Posts Tagged ‘Education’

First, thanks to all the contributors for an amazing month of insightful articles on health literacy and shared decision making. If you missed any, here’s a recap.

Steven Kussin kicked things off by asking how patients can gain enough knowledge so they can be empowered to make informed, preference-driven decisions. But with more complex medical decisions do patients need even more advanced literacy?

Corey Siegel identified a black hole of information for both practitioners and patients: cost. Too many times people find out only after they choose a treatment what it will cost, what will be covered. How can we expect anyone to make long or short term decisions without this information?

Matthew Wynia and Andrew Jager asked what organizations can do to encourage and create an environment where shared decision making can occur. The Communication and Climate Assesment Toolkit identifies health literacy strategies like teach back and creating a space where patients feel safe and encouraged to ask questions.

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Featured Guest Blogger: Nadia Ali, MB, MD, MPH

Nadia Ali, MB, MD, MPH

Nadia Ali, MB, MD, MPH

My husband woke me up at 2 AM on Monday morning for severe right shoulder pain, nausea and light-headedness. I drove him to the emergency room. Our initial encounter with the triage nurse was not very helpful. I tried to respond to her questions but she interrupted me saying the patient should answer her questions. He could hardly talk due to the pain and nausea. Finally she told us that he needs to be evaluated by the doctor and directed us to a door at the end of the hallway.

There were several doors that we saw and we were unsure about where were we suppose to go or who were we suppose to meet. There was no one to ask.

When we finally got into the emergency room, one of the nurses approached us and took us to one of the exam rooms. She told my husband to get into a gown and that she’d return in a few minutes. She left before I could tell her we had a very hard time getting his shirt on due to his shoulder pain and I needed some help. Anyway I helped him get into his gown.

The nurse returned after 15 minutes to check his vital signs and connected him to the monitor. I requested for something to relieve his pain and nausea. She said that he needs to be evaluated by the doctor before giving him any meds. Half an hour later, my husband was seen by the physician who took the history, conducted a physical exam and explained the plan of care.

My husband, who is educated and intelligent, got more confused with all the jargon used by the physician. I asked him why he didn’t ask any questions. He said he wasn’t sure it would be helpful in case the doctor repeated the same technical terms again. He also felt the doctor was possibly in a rush since he stood the whole time. Finally, around 4 AM, my husband got some pain and nausea medication. We left the ER around 6 AM with a script. Our next task was to find a pharmacy that would be open, since that information was not provided.

This was an eye-opening and powerful experience for me as a physician.

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Featured Guest Blogger:  Monica Williams-Murphy, MD

Monica Williams-Murphy, MD

Monica Williams-Murphy, MD

This is the task of surrogate medical decision-making

What if you received a phone call at 3:00am, awakening you from a deep sleep to hear my voice on the line, “I’m so sorry to wake you, but your mother (or father/spouse/etc.) is under my care here in the Emergency Department.  She’s in critical condition and appears to have had a massive stroke; she is basically unconscious. I know this is tough to hear, but she doesn’t appear to have any advance directives. And I’ve come to the point where we must decide whether or not to put her on life support. As her closest relative, I have to ask you….”

These are words that no one ever wants to hear, but it is quite possible that you will be asked to participate in such a decision for a loved one at some point in your own life. If you consider yourself to be health literate, you might feel more competent in helping to make such a decision, especially if your loved one had previously created and shared an advance directive with you.

But, what if your loved one had never written or discussed personal preferences or wishes regarding critical and end-of-life medical care?  How do we make decisions for others when they are unable to make decisions for themselves?

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Featured Guest Blogger: Alexandra Drane

Alexandra Drane

Alexandra Drane

Here’s a sobering statistic: 70% of people want to die at home, yet only 30% do. Here’s another stat you might not have thought about recently – you only die once, as Atul Gawande points out in his essay “Letting Go”.

End of life in the US has somehow failed to become personal. It’s like this thing we put on a shelf and ignore. And getting what you want at end of life has become synonymous with filling out forms and getting waivers and going to some lawyer’s office where you pay a lot of money and get excited when you get to keep the pen.

Talking about sex won’t make you pregnant, and talking about death won’t kill you. It’s time to think about how we can make these conversations more approachable and more frequent as our lives and realities change. Simply making your wishes known is itself a form of health literacy – helping your doctors and your loved ones understand your preferences and be able to advocate those wishes should you be unable to speak for yourself.

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Diane E. Meier, MD, FACP

Diane E. Meier, MD, FACP

Featured Guest Blogger:  Diane E. Meier, MD, FACP
Healthy People 2010 defines health literacy as “the degree to which individuals have the capacity to obtain,  process, and understand basic health information and services needed to make appropriate health decisions.”      Why is this important? Because several studies have shown that poor health is highest among patients with low health literacy.

For people with serious and chronic illness that causes functional or cognitive impairment, this is especially problematic. According to NALS, 75% of Americans who reported a long-term illness had limited literacy.

People facing serious illness cannot make good decisions with their healthcare team unless they understand what to expect from the illness or illnesses over time; how these changes are likely to affect their day-to-day functioning and quality of life, and that of their family; and the pros and cons of the available treatment options. This is complex information but it can be conveyed in a manner that is clear, easy to understand and offers practical guidance in the context of what is most important to the individual patient and family. Information needs to be free of confusing medical terms, and it should be offered in a variety of ways, including audio and visual formats.

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Featured Guest Blogger:  Peter Ubel, M.D.  

Peter Ubel, M.D.

Peter Ubel, M.D.

We live in an age of patient empowerment.  Medical students are now routinely taught that the “right choice” often depends on patient preferences—on how an individual patient weighs the pros and cons of her treatment alternatives.  That means medical decisions depend, more than ever, on good communication. Physicians need to help patients understand their choices so that they can partner with their patients in discovering the best alternatives, ones personalized to fit each patient’s individual preferences.

But helping patients understand their treatment choices is often no simple matter.

In my book Critical Decisions, I provide a word by word account of an earnestly communicative hematologist describing the risks and benefits of treating leukemia to his patient.  The hematologist tries to explain that there is a good chance the patient’s tumor will respond to chemotherapy.

“So if you look at complete cytogenetic response rates in the chronic phase,” the hematologist explains, “it’s about 80%, and if you look at the accelerated phase, it’s about 15%.  So, the drug doesn’t work in advanced disease very well. If you look at patients who get a complete cytogenetic response as their best response in the Iris trial, their risk of ever progressing in the next 4 years, so about 48 months roughly, is about 8% overall.”

“That’s good,” the patient replied.

“Yeah.  So, and this is divided into people who become Philadelphia chromosome positive but appear to be in chronic phase.  And half of these are people who go to accelerated phase or blast crisis.  If you look at people who had complete cytogenetic response, this is people who had complete cytogenetic remission at any time of the trial, … if you look at people who are at complete cytogenetic remission at 6 months like you are, this is probably less than 5%, so.”

“Over 4 years?”

“Yeah,” the doctor replied. “Now if you look at the curves, truth be known, there’s a steady decline.  It’s about a risk of losing progression overall in the study of somewhere between 2-4% per year.”

“Say that part again,” the patient interjects, “because I didn’t quite follow you.”

The patient is understandably confused.  In less than two minutes time, she has been deluged with numbers: 80%, 15%, 48 months, 4 years…whose head wouldn’t be spinning?  Later in this conversation, during an appointment that lasted more than an hour, the patient would learn that if she goes into complete remission (one of those numbers from above, I think), she would still face a 5% risk of cancer progression over the next 4 years, and a 4% risk (time-frame unspecified by the physician) of expressing new chromosomal changes.  If she has a recurrence, she can get a bone marrow transplant (which led to a 5 or 10 minute conversation laying out the odds of surviving such a treatment, plus the odds of experiencing graft versus host disease: “there’s about a 40-50% chance you’d need some therapy for that.  And then if you are an unrelated donor and a match, it goes up to about 70% …”), with the subsequent risk of chronic relapse of 5 to 8% depending on …well, does it really matter anymore?

We physicians are a highly numerate group of people.  To us, numbers are second nature.  In many doctor/patient encounters, in fact, physicians unwittingly flip back and forth between percentages (“3%”) and frequencies (“8 out of 100”).  After all, isn’t 3% the same thing as 3 out of 100?  But for many patients, this back and forth is incredibly confusing. Look what this back and forth did to Yogi Berra, who, when asked by reporters to explain the intricacies of baseball explained that: “90% of the game is half mental.”

Good decision making often depends on good communication.  The patient empowerment revolution succeeded in convincing most of us physicians that patients deserve an important role in making medical decisions.  Now we have to find better ways of helping doctors and patients talk with each other, in a language each party can understand.

About the Author: 

Peter Ubel, M.D. is a physician and behavioral scientist at Duke University.  He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together.  He blogs at www.peterubel.com and you can follow him on Twitter @peterubel.

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Andrew Jager, MA

Featured Guest Bloggers:  Andrew Jager, MA & Matthew Wynia, MD, MPH, FACP

  • Do patients at your organization understand what doctors tell them?
  • Are staff members adequately trained in using plain language with patients?
  • Do leaders and policymakers know the range of patients’ literacy levels and so they create an environment in which patients of all levels feel comfortable asking questions?

Do you know the answers to these questions? The truth is, valid data on these issues aren’t easy to gather. Yet knowing the answers to these questions is increasingly urgent to practitioners and leaders in health care organizations.

In the Institute of Medicine’s landmark report, Crossing the Quality Chasm, there is a call for systems to be “designed to serve the needs of patients, and to ensure that they are fully informed, retain control and participate in care delivery whenever possible, and receive care that is respectful of their values and preferences.”

Clinicians are being encouraged to engage patients more in care decisions.  And many patients expect this participation, as they should — and often must — to get good outcomes.

Matthew Wynia, MD, MPH, FACP

But what should organizations do to create an environment in which it’s easier to get patients involved in care decisions? 

To help organizations get a handle on these questions, the AMA worked with leaders from hospitals, nursing, patient organizations, purchasers, employers and more to identify a set of practical performance expectations for high-quality communication and care, including factors such as health literacy and patient engagement in decisions.  We asked a national panel of experts to come to consensus on what it would mean for a care facility like a hospital to fully support patient engagement in care decisions.  To help in this work, we also went out to the field and visited hospitals that were doing an exemplary job, to see what steps they were taking.

These hospitals had programs to help communication-vulnerable populations navigate the health care system, they provided educational and notification materials at appropriate literacy levels, they trained their staff on use of teach-back, and, perhaps most important, they sought out and celebrated staff members who went out of their way to provide clear information to patients.

Our visits to hospitals also showed, however, that even top-performing organizations have opportunities for improvement.  This is no surprise given the complexity of issues like shared decision making.

But building a better communication climate requires knowing where to start.

When valid data are collected in a baseline assessment of the communication climate, organizations can then decide where best to invest their resources. Sometimes the data suggest addressing deficient areas; other times it might make more sense to use an appreciative inquiry approach and build on areas of success.  One tool for performing such an assessment is the Communication Climate Assessment Toolkit, or C-CAT, which was the result of the AMA-led work described earlier in this post.

But building a better communication climate requires knowing where to start

While we believe the C-CAT is an especially good tool, the point of this post is not to promote it. Rather, the aim is to encourage health care facilities — whether hospitals, clinics, group practices, ACOs or others — to systematically collect data regarding organizational performance and processes, and use these data to work toward the creation of an organizational climate that makes it easier for professionals to consistently deliver high-quality care to all patients, including involving folks in decisions about their own care.

This table at the end of this post lays out some of key consensus performance expectations in the domains of health literacy and patient engagement that came from the AMA’s multi-stakeholder process, along with how these expectations have been translated into the different instruments that make up the C-CAT. You can find all the performance expectations behind the C-CAT measures in our full consensus report, Improving Communication—Improving Care.

Despite the challenges of doing a comprehensive organizational assessment of communication climate, we believe the outcome — improved patient understanding of health information and greater patient empowerment in their health decisions — makes the effort worth it.

About the Authors:

Andrew Jager, MA  is a Research Associate at the American Medical Association’s Institute for Ethics. Mr. Jager’s research interests include looking at interventions to improve health care communication and reduce disparities and developing measures of the ethical environment in health care. Additionally, Mr. Jager manages the Communication Climate Assessment Toolkit (C•CAT) program, which provides health organizations with a 360-degree assessment tool for organizational performance on communication that is effective and patient-centered. Mr. Jager has worked on numerous research projects on topics ranging from teen obesity to corporate governance in Latin American and European markets. Mr. Jager is fluent in Portuguese and Spanish and holds an MA in Latin American, Caribbean and Iberian Studies from the University of Wisconsin-Madison and a BA from BeloitCollege.

Matthew Wynia, MD, MPH, FACP, Director, Institute for Ethics & Center for Patient Safety at the American Medical Association is an internist and specialist in infectious diseases.  At the American Medical Association, he oversees projects on topics including learning from medical errors, physician professionalism, ethics and epidemics, medicine and the Holocaust, and inequities in health and health care. The author of more than 125 published articles and a book on fairness in health care benefit design, his work has been published in leading medical and health policy journals and he has been a guest on ABC News Nightline, the BBC World Service, NPR and other programs. Dr. Wynia cares for patients at the University of Chicago.

Footnotes:

  1. Do patients at your organization understand what doctors tell them?  http://www.ama-assn.org/resources/doc/ethics/patient-survey.pdf
  2. Are staff members adequately trained in using plain language with patients?  http://www.ama-assn.org/resources/doc/ethics/staff-survey.pdf
  3. Do leaders and policymakers know the range of patients’ literacy levels and do they create an environment in which patients of all levels feel comfortable asking questions?  http://www.ama-assn.org/resources/doc/ethics/organization-survey.pdf

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