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A Recap of Plenary and Selected Breakout Sessions
IHA's 8th Annual Health Literacy Conference
Friday, May 8, 2009

 

"Informed Consent and Ethical Duty in Health Literacy"

Lawrence Gostin, J.D. 

 

Dean Lawrence GostinAs healthcare expands its definition of health literacy and its understanding of the topics that fall within the scope of health literacy, new concerns are raised.  One of the more recent issues recognized as having a health literacy connection is the legal concept of informed consent.  Lawrence O. Gostin, an internationally acclaimed scholar and Dean of the Georgetown University Law Center, spoke about this connection at the Institute for Healthcare Advancement's 8th annual Health Literacy Conference.  Dean Gostin underscored the ethical impacts of health literacy disparities and their importance beyond the healthcare environment.

 

"The United State is preoccupied with the idea of personal freedom," began Dean Gostin. Political parties may differ in the specific freedoms they value, he said, but they are all "focused on every individual being responsible for himself, which is very much an American ideal."  As a result, he claimed, the United States has lost its understanding of the common good and the idea that we have a responsibility to one another.   

 

Dean Gostin suggested that advancements in bioethics and law in this country were central to the construction of the ideal of personal autonomy.  At the same time that bioethics was placing increased emphasis on personal autonomy in healthcare in the United States, the legal profession was working on a legal construct as a mediator in bioethical issues, he said.  That legal construct was "informed consent." 

 

Limits of Informed Consent

Our legal definition of informed consent dictates that it contain four elements, he explained.  The consent must be:

  1. voluntary 
  2. fully informed 
  3. specific, and
  4. the individual must be competent to understand the information presented 

 

The problem, according to Dean Gostin, is that these are not easy to achieve.  First, the line between voluntary and involuntary is not clear, he said, because individuals don't have completely free choice.  And, he added, presenting more information to ensure that a patient is fully informed does not necessarily foster understanding.  Sometimes, he asserted, too much information can be confusing.  Then, the idea of specificity is "not that clear."

 

As for competency, Dean Gostin sees it as the one human attribute "that is more important than anything else."  If you take away competency, whether by law or practice, you take away a person's control over his or her life.  But someone can be competent in some areas but not in others, he said.  And there is the question of at what age a person becomes competent.  Also, measuring competence is tricky, since people have multiple ways of understanding.  And, he said, competence is not fixed in time.  Finally, he asked, if we declare someone incompetent, does that mean he can never be treated or participate in a healthcare study? 

 

Informed consent, said Dean Gostin, is used not to protect patients but to protect institutions.  If someone agrees to a medical intervention-even if there is no evidence that it will work-we can fall back on the fact that the individual gave consent, he explained.  It is also used as protection when it comes to privacy.  "But the link between consent and privacy is particularly tenuous," he warned.  Patients need to consent to receive treatments, participate in research studies, etc., but in doing so they unknowingly consent to infringements on their privacy, he explained.

 

The Health Literacy Connection

Literacy and consent converge, said Dean Gostin, because the idea of consent has become so important in the United States.  Research reveals problems with consent, but because it is so important, healthcare is convinced that it must make consent work.  Healthcare is looking to literacy to solve the problems, said Dean Gostin.   

 

"On one level, the health literacy world must be right.  If we accept consent as the model, it has to work as intended.  It has to be truly voluntary.  You have to have genuine understanding.  There has to be a true meeting of minds when somebody agrees to something," said Dean Gostin.  And, he said, the field has come up with good ideas to fix the consent model-the idea that consent is a process, that the person seeking consent has a responsibility to ensure the patient's understanding, that multiple forms of communication must be available to meet people's multiple ways of understanding-but society has not adopted them. 

 

"If it is true that consent is essential, then it must be true that consent must be real," said Dean Gostin.  But he warned that consent as a model may never work as intended.  It is, he said, essentially a flawed model.  Even if we could fix consent, he explained, it would not be highly protective of all important personal rights of all individuals. 

 

Why Informed Consent Doesn't Work

Dean Gostin went on to examine why informed consent does not work.  The forms, he contended, are "manifestly too complex" and not intended for the benefit of patients.   Also, the consent gained is conditional, because if patients do not sign the forms, they do not get the necessary treatment.  In addition, there is an inherent conflict of interest in the consent model.  Those seeking consent have incentives to obtain it, not to ensure understanding.  And then there is the imbalance of power in the consent process.  The reading level of the forms is higher than that of the average adult, and they are given to patients when they are most vulnerable and perhaps not most lucid, he said. 

 

Dean Gostin pointed out that, for many people, understanding is linked to dignity.  Because America prizes literacy, it can be shameful for people to admit that they do not understand something.  Often, there are also language barriers or socioeconomic disparities at play, he added. 

Certain scenarios present special problems, said Dean Gostin.  Institutionalization is one example, he said.  There is no privacy in prison and no true ability to consent.  Officials know who is participating in screenings or studies, and prisoners may believe that participation will lead to earlier release, even if they are told that it won't, he said.  Public health screening is another problem scenario.  He pointed to the debate over widespread HIV screening and the role of consent in that process.  Public health officials insist that gaining consent from everyone would take too much time, so they constructed "opt-out" screening.  The problem, said Dean Gostin, is that people may not know how to opt out, so we are constructing an illusion of consent where it does not exist. 

 

"These are truly questions of social justice," he said.  "They're questions of what is right and fair.  The way we get benefits and privileges in our society is mediated through consent.  In my view, though, it is constructed to disadvantage the already disadvantaged."

 

Why Consent Cannot be Fully Effective

In the end, even if it worked, consent can never be fully effective, said Dean Gostin.  We assume every adult is fully autonomous and competent, but that is not so.  We are influenced by our peers, our culture, our society, he said.  How you live is not just a choice but a function of where you live and who you know.  Often there are internal constraints at work, too.  People are dealing with dependency, habitual behavior, addictions, etc.  Consequently, their consent cannot be seen as a matter of free choice, he said.   

 

In addition, making the choice to be healthy is the harder choice today, he said.  It is not easy to find healthy food and get exercise.  We can tell an inner-city mother to make sure her kids eat healthy foods, he explained, "but go outside and see what she sees."  She does not see supermarkets with fresh fruit and vegetables, and there may not be safe playgrounds for children to get exercise. 

 

Dean Gostin called for a realistic view of consent and for a shift toward recognition of the common good.  He also called for work on literacy and consent to move beyond health research to public health and health education.  "Yes, we need to make consent work, but it will never work absolutely.  We need to find other mechanisms to ensure a healthy, safe society where we look at the common good," he said.  "In short, we need a well-regulated society that focuses on the health of the population with particular attention to the needs and the benefits of those who are the most disadvantaged among us."

 

 *     *     *

 

"Making the Business Case for Health Literacy"

George Isham, M.D.

 

Formulating real-world health literacy interventions is unarguably the next step for the health literacy field.  But just developing projects is not enough.  In fact, the real work may very well start once project development is complete, because to implement a project you also have to get it funded.  George Isham, MD, MS, medical director and chief health officer for HealthPartners, Inc., in Minneapolis, Minn., acknowledged that this is not always easy.  It often takes time, he said, for large organizations to take action, so "it is a matter of persuasion and long campaigns."  He suggested that using the business case model could be helpful in getting organizations to commit to health literacy in the long run.

 

What is a Business Case?

A business case, said Dr. Isham, provides a rationale for change.  It makes the argument for change-generally in terms of costs and benefits-and provides a framework for planning and management (i.e., how it will be done and who will do it).  This framework is often used to monitor and evaluate the change. 

 

At minimum, he said, a business case answers the following questions:

  • What is the problem?
  • What should be done about it?
  • Why should we do this? (Is it aligned with our mission?)
  • What are the risks / benefits / costs? ("Giving to one thing means not giving to another.  You are often competing against other good ideas," said Dr. Isham, "so considering costs may be useful.") 
  • What options were considered? (Did you consider the "do nothing" option?)
  • Who will benefit from the project?   (Patients, families, etc.)
  • What are the key deliverables?  (What specifically will result from this project?)
  • What is the timeline? 
  • How will you measure success?  (How can you tell if it is working?)
  • Where will the resources come from? 

Dr. Isham also presented a Fitness for Purpose checklist for business cases (adapted from Making a Business Case for Health Literacy, available online from the Minnesota Health Literacy Partnership).  Once you have written your business case, he advised, consider these questions:

  • Is the business need clearly stated?
  • Have the benefits been clearly identified?
  • Are the need for and benefits of the project consistent with the organization's strategy?
  • Is it clear what will define a successful outcome?
  • Is it clear what the preferred option is?
  • Is it clear why this is the preferred option?
  • Where there is external procurement, is it clear what the sourcing option is?
  • Is it clear why this is the preferred sourcing option?
  • Is it clear how the necessary funding will be put in place?
  • Is it clear how the benefits will be realized?
  • Are the risks of the project explicitly stated?
  • Are the plans for addressing those risks explicitly stated?

However, cautioned Dr. Isham, the business case, though important, cannot do all of the work.  "You must have the groundwork laid before you ask for money," he said.  "Nothing happens in an organization without persuasion, without one to one communication, without relationship building, without awareness, without having a political network. You've got to get a campaign in place so that by the time you make your proposal, you already know you've got friends in the room."

 

Why Do We Need a Business Case for Health Literacy?

Health literacy is not a mature topic, so work may still be needed to convince your organization that the issue deserves attention and support.  Even in organizations that have embraced the importance of health literacy, people are trying to figure out what is practical and doable, said Dr. Isham.  That is why you need a business case, he said.  You need to show how health literacy in general-and your program in particular-aligns with the organization's already-identified priorities.  You need to show that your program is reasonable and will help achieve these priorities.    

 

With that in mind, Dr. Isham illustrated the process he would use to make the case for health literacy programs in his organization, HealthPartners.  He might begin, he said, by presenting information like the findings in a paper by McGlynn, et al published in the June 2003 New England Journal of Medicine that showed that only about 55% of people receive recommended care as well as information illustrating the adverse outcomes of people who do not receive recommended care (e.g., For people with hypertension, blood pressure was uncontrolled in 58% of cases, which resulted in 68,000 preventable deaths.) Then, he said, he would present information that reveals that individuals with low literacy are more likely to not get the recommended care.

 

Resources

Dr. Isham suggested resource materials from the following agencies: 

 

AMA

Opportunities to align health literacy programs with the business concerns of an organization include:

  • Strengthen mission
  • Improve quality of care
  • Enhance customer loyalty, retention, appropriate utilization, and public image
  • Increase market share
  • Promote cost-effective care
  • Enhance workforce and stakeholder morale
  • Solidify leadership position. 

 

Risks of ineffective communication include:

  • Legal risks
    • Informed consent concerns
    • Civil rights and antidiscrimination laws concerns
  • Regulatory obligations
    • CLAS standards
    • Accreditation and other requirements
    • Avoiding  medical errors, other adverse events, and lawsuits

 

U.S. Department of Health and Human Services

Tips for advocating for health literacy include:

  • Make the case for health literacy
    • Include health literacy in staff training and orientation.
    • Identify special projects and programs affected by low literacy
    • Target key opinion leaders with health literacy information.
  • Incorporate health literacy into mission and planning
    • Convene work group to develop health literacy agenda for organization
    • Include health literacy in grants, contracts, and memorandums of understanding
  • Establish accountability
    • Include health literacy improvement in program evaluation
    • Include health literacy in budget requests
    • Implement health literacy metrics

 

Joint Commission

·        Make effective communications an organization priority to protect the safety of patients.

·        Address patients' communication needs across the continuum of care.

·        Pursue policy changes that promote improved practitioner-patient communications.

 

Educating the Organization

As part of the campaign to promote health literacy and garner support for health literacy programs, it is important to ensure that your entire organization understands the importance of health literacy, said Dr. Isham.  The organization also needs to recognize that limited health literacy is not a result only of patient abilities, but also of the way healthcare providers connect with patients.  Providers and organizations need to understand that they are part of the problem.  Patients' abilities to understand health information is related to the clarity of the communication, he said, and clarity is affected by the use of medical jargon, complicated healthcare systems, and complex information.

 

There is ample research to show that there is frequently a mismatch between the reading level of health information and the reading skills of patients as well as between the communication skills of health professionals and the communication skills of patients.

To remedy this, communication must be tailored to the needs and skills of the individual patient, he said.  The idea that health literacy emerges from this kind of patient-centered communication is central to the efficacy of health literacy programs.  To achieve patient-centered communication, said Dr. Isham, attention must be paid to things like the language, understandability, format, level of detail, and cultural appropriateness of the communication.   

 

 

What Should We Be Doing About Health Literacy?

In terms of setting the stage to promote health literacy programs in your organization, said Dr. Isham, it is wise to use its priority-setting process to embed a priority so that it is already recognized when you are ready to suggest a program.  This way, he said, "You already have a platform.  You've got 90% of your work done.  All you have to do is the hard work of putting together specific proposals to get resources allocated." 

 

He illustrated how he used the priority-setting mechanism of HealthPartners to embed health literacy as an organizational priority, translated that to a specific organizational goal, and then identified the steps necessary to achieve that goal.  HealthPartners, he said, realized that it needed to dispel misperceptions regarding health literacy and hard-wire clear communications via teach-back during office visits, EMR support, and the adoption of standards for all patient communications.  The organization also committed to working collaboratively with others organizations.  Finally, said Dr. Isham, HealthPartners actually adopted specific initiatives and tried to build in accountability and high-level executive support as well as specific goals and ways of measuring progress toward them. 

 

"It always boils down to leadership," said Dr.Isham in his closing remarks.  "Leadership not in the sense of formal leadership at the top of an organization; leadership in the sense of having an idea of what can be done to improve the experience of the patients that you're serving that is consistent with the vision of the organization, what you can do to move that ball forward, and, from wherever you sit within an organization, what influence you can have on getting these processes in place."

 

 *     *     *

 

"Lessons from the Intersection of Adult Literacy and Health Literacy"

John Comings, Ed.D

 

John Comings, Ed.DIt seems reasonable, when faced with low literacy, to look to education as a solution.  In other words, it is easy to place the burden of addressing low literacy on the low literate themselves.  John Comings, Ed.D, principal international technical advisor at the Education Development Center in Newton, MA and former Director of the National Center for the Study of Adult Learning and Literacy (NCSALL) and faculty member of the Harvard Graduate School of Education, explained why this view is flawed.  Looking at information from the very same measures that alerted the healthcare arena to the problem of low literacy in the first place, Dr. Comings explained why the healthcare field cannot rely on education alone to solve the problem of low literacy among patients.

 

What is Literacy?

Dr. Comings began by pointing out that, on the National Adult Literacy Survey (NALS) (1992) and National Assessment of Adult Literacy (NAALS) (2003), the difficulty of the questions was determined not just by the difficulty of the text but also by the difficulty of the tasks that test takers were asked to do.  He explained, "If I gave you a physics text and opened it to the chapter on Einstein's Theory of Relativity, most of you, even those with a science background, would find it difficult to understand.  However, if I asked you "E equals what?' you would be able to go into this very difficult text and find the formula E=mc2.  If I gave you a Discover magazine article on the subject, you would find it easier to read.  But if the question I asked was, 'Why does E=mc2?' that would be extremely difficult."

 

The field of education views literacy as both a set of component skills (alphabetics, fluency, vocabulary, and comprehension) and the practices in which people must employ them to accomplish tasks, he said.  Dr. Comings pointed out that health literacy is a practice to which people might not have been exposed.  So the problem of low literacy might result from patients' inability to process text, but, he said, "They also may be at a disadvantage because they are unfamiliar with your practice."

 

Test Scores

Dr. Comings pointed out that a number of things could cause people to score in the lowest levels on national assessments of literacy.  Someone with a high vocabulary score but low print skills score might very well get the same NAAL score as someone whose vocabulary was lower but whose print skills were higher, he explained. 

 

Generally, those in the Below Basic level of the NAAL, said Dr. Coming, either have a physical, mental, or cognitive barrier severe enough to impact their ability to learn or have limited English skills (even with high-level reading skills in their first language).  "This is a group of people whose main problems with reading are pretty fundamental.  They come from having difficulty with the print skills as well as having difficulty with vocabulary and comprehension," said Dr. Comings. 

 

As for those at the Basic level, he said, "This population is simply undereducated and under read."  From an instructional standpoint, the problem is not print skills but fluency and vocabulary.  When NAAL scores were compared with scores for component skills, said Dr. Comings, it became apparent that those people who scored above Basic on the NAAL scored about 90% in vocabulary and fluency; those in Basic or Below Basic scored closer to 60-70%. 

 

While this seems like a clear-cut argument that teaching reading skills is the solution to low literacy, Dr. Comings pointed out that there are challenges.  First, he said, the vocabulary needed to move beyond Basic is not simple vocabulary like "table" and "chair;" it is vocabulary like "Uruguay," which most people probably have not uttered in five or ten years.  Low-literate adults, he said, don't know these words.  To increase their NAAL scores, they would have to learn words that they would not use regularly.  Dr. Comings also pointed out that 7 million people were excluded from the NAAL because they could not answer even the most basic questions.  Tests revealed that their average reading speed was 34 words/minute.  The average reading speed for the people in the NAAL was 98 words/minute, and, he said, "most of the people in this room are reading at 250 words/minute."  Thus, in both vocabulary and fluency, people would have to make huge leaps to move from the Below Basic or Basic level to Intermediate or Proficient.

 

Age seems to be a factor, too.  Analysis of NALS scores showed a decline in literacy among the population after about age 45, said Dr. Comings.  One hypothesis is that short-term memory, which is important in reading, begins to decline at this age.  A second hypothesis is illustrated by a longitudinal study of 1,000 high school dropouts, all of whom spoke fluent English, he said.  According to the study, participants' literacy skills improved every year until about age 30 and then declined.  Interestingly, the amount of reading and writing they reported doing followed the same pattern.  Perhaps, said Dr. Comings, as people become more settled in their jobs, relationships, habits, etc., they are not reading as much and their overall literacy suffers as a result.  So, difficult-to-change factors like physiology and lifestyle could also affect literacy.

 

Improving Health Literacy

Realizations about the challenges inherent in educating someone out of low literacy should encourage the health literacy field to approach the problem from the perspective of universal access, said Dr. Comings.  Just as public buildings have wheelchair ramps available so that those with mobility issues can enter, healthcare should be accessible to people of all literacy levels, he said, and technology-particularly through the Internet-seems to offer that ability. 

 

Those at the highest literacy levels will benefit from healthcare continuing to do the things it has been doing, like using plain language and giving patients easy access to additional information, he said.  People at the Basic level also need these things, but they need simpler vocabulary and shorter sentences, said Dr. Comings.  "They're also going to need some kind of support-particularly access to definitions-built into this communication," he noted.  And, he said, the healthcare field must be sure that this kind of support is built into not just the primary information these patients are given but also in the additional information linked to it. 

 

For the Below Basic group, Dr. Comings suggested that assistive technology might be extremely helpful.  He said that this group would benefit from being able to have text read to them, but at a speed they could control and with each word being highlighted as it is pronounced. 

 

There are opportunities to impact health literacy without waiting until patients have achieved proficiency on the kinds of skills measured by national assessments, said Dr. Comings.  Patients need help with health literacy now, and technology offers some solutions.  He pointed out that computers and handheld devices make access to the Internet widespread, and studies show that even those with low literacy not only have access to but are increasingly using computers.  Furthermore, he said, there are strong indications in the literature that people with low literacy skills have the motivation to engage in some kind of learning in order to understand the health information.  "They do try to improve their skills; they do have access to computers," he said.  "They are ready for you to work with.  The question is whether the information will be made universally accessible." 

 

 *     *     *

 

SELECTED BREAKOUT SESSIONS

 

 *     *     *

 

"Numeracy: Conveying Concepts of Quantities, Time and Risk"

Helen Osborne, M.Ed., OTR/L

 

"Numbers are everywhere in health care," where they can pose a distinct disadvantage for those with poor numeracy skills. Helen Osborne started off her presentation with a scenario about a patient, Mrs. Jones, who has diabetes, is on a restricted diet, is taking several medications, and is juggling a calendar of upcoming medical appointments. Participants of this breakout session were asked to identify all of the ways Mrs. Jones needed to process, interpret, communicate, and understand numerical health information. To keep her diabetes under control, Mrs. Jones would need to understand numbers relating to A1c, cholesterol, and blood pressure. She also needs to know how and when to take her medications. To adhere to her diet, Mrs. Jones needs to know how to read a food label and how to measure correct portion sizes. And this is just the beginning.

 

Numeracy is defined as "the degree to which individuals have the capacity to process, interpret, communicate, and act on numerical, quantitative, graphical, biostatistics, and probabilistic health information needed to make effective health care decisions." In her review of current research in numeracy, Osborne reported that a vast majority of the lay public struggles to understand and use numbers. Numeracy, then, is an important component of health literacy, because much of the health information patients receive requires them to understand concepts of quantity, time and risk.

 

Osborne compiled a list of 52 strategies to communicate quantity, time and risk in person, in print, and with technology and devices. Examples include using a pain scale with numbers, words and  pictures; visually showing patients the comparison in size between teaspoon, tablespoon, soup spoon and baby spoon; using simple pie charts, bar graphs and other diagrams to show percentages or make comparisons; using colors to convey urgency, such as red = emergency/act now, yellow = important/call soon, and green = it can wait until the next appointment; using pill boxes and other ways to sort by time; and using gestures for indicating risks versus benefits.

 

Simple gestures can be very helpful, Osborne said, as she recalled how her doctor used the gesture of holding one hand at shoulder level and the other hand at waist level while explaining how the benefits of a particular medication outweigh the possible risks and side effects. "That simple gesture," Osborne said, "helped me make my decision."

 

Participants were divided into small groups and assigned a key concept of numeracy to focus on: quantity and calculations, time, or risk and other comparative data. Each group was asked to have a discussion to think of additional strategies to use when communicating numerical health information to patients. The groups then reported their key findings, which included: avoiding vague terms such as adequate, moderate, and plenty; using technology such as pedometers and talking scales; connecting activities (such as taking medications) to daily landmarks such as before/after school or at breakfast and dinner; and using a visual teach-back approach such as a picture with 100 stick figures and asking patients to circle the correct number that represents their risk. Perhaps the most helpful tip for improving communication of quantity, time and risk was offered by one participant who stated, "Consider whether you really need to use numbers at all."

 

Participants in both the morning and afternoon sessions worked in small groups to come up with additional ways of conveying numeric concepts. Here are some highlights:

 

Quantity & Calculations

·        Separate concepts, such as in a discharge brochure asking people to keep track of medication by time of day, quantity of each dose, and total per day. Have separate sections for: When do I take medication? How many pills do I take? How much medication am I taking?

·        Compare new concepts to familiar ones. To explain why babies breastfeed so frequently, explain that "a newborn's tummy is the size of a chickpea, then a cherry, then a walnut. That's why they feed so often." 

·        Define and use words consistently. Decide how you and colleagues will use words such as "risk" and "maybe."

·        Build on television commercials, such as the one from Verizon that shows a few and then a lot of sprinkles.

·        Have people fill in pictures of clocks, such as teenagers showing how much they sleep and what they think is sufficient.

·        Avoid vague terms such as "adequate," "moderate," and "plenty."

·        Take advantage of existing websites, such as those that compare costs of brand-name, generic, and over-the-counter drugs.

·        Consider culture, even when using the "plate method" to show portion size. Some cultures use bowls, not plates. Not everyone uses silverware. Modify visual aids to be culturally appropriate.

·        Use technology such as pedometers and talking scales.

·        Make it fun. For children, you might say "We'll get to Grandma's house in 3 Batman shows from now." 

 

Time:

·        Help those without clocks, watches, or even homes keep appointments by relating to something they regularly do, such as "Come to the clinic after you go to the soup kitchen on Tuesday."

·        Relate to activities in a person's everyday life. For a child, this might be "You can have more pain medication after you watch 2 cartoons."

·        Consider using text messages, cell phone reminders, or portable timers.

·        Help patients remember about medication with a device modeled after robots used to dispense medication in hospitals.

·        Associate timed activities with music, such as "Brush your teeth for as long as you hear your favorite song" and then play it.

·        Choose soap with beads that change color after so much time to indicate when to stop washing.  

·        Tie activities with daily landmarks such as before/after school or at breakfast and dinner.

·        Print calendar grids so people can add checkmarks when they take medication. This way, they won't have to remember whether they took it.

·        Have forms and calendars to show causality. For instance, someone who gets headaches might need to include the timing of sleep, food, and symptoms. 

·        Use technology such as cell phones, alarms (set when you're together), electronic pill boxes, and text messages.

·        Use the calendar function on cell phones, email, or outlook.

·        Send out automated emails as reminders.

·        Put stickers on calendars, showing activities to do each day.   

 

Risk:

·        Teach 1-1 or in a small group class.

·        Say "3 out of 10" rather than "30%."

·        Say "chance" versus "risk."

·        Personalize information, such as showing a picture of a staircase and saying "Here you are and here are options to get where you want to be."

·        Show a DVD or use software program that shows situations visually.

·        Give a common analogy. For example: To explain why not to use antibiotics for treating viruses, relate to "not using bug spray to get rid of weeds in your garden."

·        Use numbers needed to treat (NNT), such as "We would need to treat 500 people for 1 to get benefit from this." Or "If we do surgery on 100 people, 30 will get real benefit." NNT can help people put statistics into perspective.

·        Frame information in as positive a way as possible.

·        Use colors (such as red, green, yellow) to compare items and show which is positive/negative, or more risky and less risky. 

·        Do not equate risk with flipping coins as some cultures have superstitions about that.

·        Use a visual teach-back approach. This might be having a picture with 100 stick figures and asking the person to circle how many are at risk for [x]. This is a good way to find out whether people internalized concepts of relative or absolute risk.

·        Adapt what people know from television, such as how to tell when cars are at risk.

·        Allow more flexibility. For instance, for BMI let people overflow beyond rigid boxes. 

·        Combine strategies such as explaining risk with humor, pictures, and color. 

·        Have a videogame of someone doing a risky behavior and what happens as a result.

·        Stack up risks in columns; the higher the column, the more risk.

·        Consider whether you really need to use numbers at all. 

 

Additional Resources:

·        Ariely D. Predictably Irrational, Revised and Expanded Edition: The Hidden Forces That Shape Our Decisions (May 19, 2009). As described by a workshop participant, this book highlights how our brains are programmed to function in ways that are not always rational in terms of numbers. 

·        Apter et al, "Numeracy and Communication with Patients: They Are Counting on Us," J Gen Intern Med 23(12):2117-24.

 

 *     *     *

 

"Working Effectively with LEP Patients and Medical Interpreters"

Elizabeth Abraham, MA, M.Sc.

 

Increasingly, the field of health literacy recognizes the importance of the oral exchange.  Discussions of how to use and build on the teach-back technique and questioning to ensure that patients have understood and have been understood are gaining attention.  But what do you do when the effectiveness of these techniques are limited by the fact that the patient and the provider do not share the same language?  Elizabeth Abraham, M.A., M.Sc., manager of interpretation and translation services at the University Health Network in Toronto and President of the Board of Directors of the Healthcare Interpretation Network, looked at the use of interpreters to address this challenge.

 

The Problem

Ms. Abraham is well versed in the challenges that a multi-lingual population presents to the healthcare arena.  She works in Toronto, the most ethnically diverse city in the world, where 146 languages are spoken and nearly half of the population has as their native tongue a language other than English or French.  In the University Health Network alone, she said, there are approximately 15,000 interpreted healthcare encounters a year. 

 

In general, healthcare workers are not well prepared to serve limited English proficiency (LEP) patients, and this can lead to unfortunate consequences, said Ms. Abraham.  The patients pick up on the frustration of the front-line staff and the impatience of providers.  The underlying tension present in the encounter impedes the creation of a connection between patients and providers, she said, which leads to a lack of trust on the part of the patients and, often, to "poor adherence and poor outcomes."

 

Clearly, interpretation in these encounters is necessary to ensure patient-centered care and patient safety, for risk management and cost control, and to meet the needs of the diverse patient population, she said.  And fortunately, the cost of using an interpreter in a clinical encounter is about the same as the cost of an x-ray. Yet, according to Ms. Abraham, healthcare workers still do not call for interpreters as often as they should. 

 

Convincing the Organization

The Massachusetts General Hospital Disparities Solution Center, in its report titled Improving Quality and Achieving Equity: A Guide for Hospital Leaders (www.mghdisparitiessolutions.org), offers compelling information on the need for solutions for working with LEP patients.  This report illustrates that an increase in the use of trained interpreters leads to a decrease in costs, thanks to:

  • shorter inpatient stays
  • fewer readmissions
  • fewer emergency visits
  • fewer diagnostic tests
  • more accurate diagnoses
  • greater likelihood of patients attending follow-up appointments, and
  • better patient adherence to treatment plans.

A cost-benefit analysis comparing the options of not using interpreters, using untrained interpreters, and using trained interpreters revealed that the use of interpreters was related to a number of patient and institution benefits, said Ms. Abraham.  It compared mortality rates from chronic, manageable diseases for English-speaking and LEP patients.  It also compared proportions of admissions, emergency room visits, and outpatient visits of the two groups, she said.  The analysis revealed that integration of interpretation services led to a reduction of disparities in mortality rates between English-speaking and LEP patients for specific diagnoses, a shift in utilization from inpatient and emergency services to outpatient clinics and primary care, a reduction in diagnosis codes for LEP patients, and reduced overall healthcare costs. 

 

Risk Management

The use of interpreters also affects risk management, she noted.  Risk management looks at the use of interpreters and asks whether it is an essential service and whether action should be taken.  "If it is not essential and we don't act, there are no consequences.  If it is not essential and we do act, we have spent money, but it is a tiny amount compared to the money spent on keeping patients in the hospital longer than necessary.  If it is essential and we don't act, there are delays in diagnosis, poor patient outcomes, medical errors, lawsuits, negative impacts on reputation, and increased overall costs.  If it is essential and we do act, we see lower overall costs, better patient outcomes, patient-centered care, patient safety, and positive impacts on reputation," she said. 

 

Risk managers are concerned with informed consent, too, pointed out Ms. Abraham.    She holds that interpreters are necessary to the consent process.  "To treat patients without their consent is battery," she said.  Family members and bilingual staff are not acceptable substitutes for medical interpreters when seeking consent or discussing a negative diagnosis, home care, or medication instructions, she said.

 

Standards of Practice

Professional medical interpreters are bound by certain professional standards and ethics.  They include:

  • Accuracy-Interpreters strive to render all messages accurately, as faithfully as possible and to the best of their ability without addition, distortion, omission, or embellishment of the meaning.
  • Confidentiality-Interpreters will not disclose and will treat as confidential all information learned, either uttered or written, in the performance of their professional duties, while adhering to relevant requirements regarding disclosure.
  • Impartiality-Interpreters strive to maintain impartiality by showing no preference or bias to any party involved in the interpreted encounter.
  • Respect-Interpreters demonstrate respect toward all parties involved in the interpreted encounter.
  • Role Boundaries-Interpreters strive to perform their professional duties within their prescribed role and refrain from personal involvement.
  • Accountability-Interpreters are responsible for the quality of interpretation provided and are accountable to all parties and the organizations engaging the interpreter's service.
  • Professionalism-Interpreters at all time act in a professional and ethical manner.
  • Continued Competence-Interpreters commit themselves to life-long learning in recognition that languages, individuals, and services evolve over time and a competent interpreter thrives to maintain the delivery of quality interpretation.
  • Confidentiality-Psychiatrist says that the interpreter is the most important person in the room.  Are interpreters required to disclose abuse of children or threats?  In Canada, they are.  Ask them to destroy notes, journals, once done. 

 

Working with Medical Interpreters

Healthcare professionals also have some responsibility in clinical encounters involving interpreters, Ms. Abraham reminded the attendees.  She offered some best practices for healthcare professionals using the services of a medical interpreter.

 

Before the encounter

  • Bring the patient into the exam room when the interpreter arrives.
  • Brief the interpreter outside the exam room/patient room.
  • Start the encounter by letting the interpreter introduce him/herself.

 

During the encounter

  • Focus on the patient; maintain eye contact.
  • Speak in the first person.
  • Speak at an even pace.
  • Break every 1-2 sentences.
  • Check in with the interpreter if you suspect the entire message wasn't interpreted.
  • Check in with the patient for comprehension.
  • Remember that everything uttered is interpreted.

 

After the encounter

  • Document the interpreter's name in the patient chart.
  • Debrief with the interpreter, if required.

 

The use of professional medical translators clearly supports the value of health literacy and leads to more patient-centered care.  It addresses the problem of literacy and care disparities among the population and positively impacts both the problem of disparities in patient health outcomes and the organizational challenges of costs and risk management.   There are clear health reasons and financial reasons for healthcare systems to make the use of medical translators standard practice.  But perhaps the most important reason to embrace and optimize the practice is the fact that, "language rights are human rights," concluded Ms. Abraham. 

 

 

 

 

 
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