2

The Patient Perspective on the Need for Health Literacy¹

To provide some context for the day’s discussions on the importance of health literacy, the workshop began with two presentations: one by Martin Ratermann, a craftsman, cancer survivor, and advocate for patient safety and avoidance of medical errors, and one by Jennifer Pearce, who founded Plain Language Health after experiencing firsthand how poor communication can adversely affect health. An open discussion, moderated by Bernard Rosof, followed the two presentations.

Ratermann’s less-than-satisfactory journey in the health care system began in 2001, when at age 49 he had his first colonoscopy at an academic teaching hospital and had a 1-inch malignant polyp removed from his rectum. At the time, nobody told him that he needed to be seen on a regular basis going forward, and even when his wife, who was employed at this same institution, asked if her husband should get a second opinion, she was told by the chief executive officer—a gastroenterologist—that he was in capable hands.

In September 2005, Ratermann noted some blood in his stool and mentioned that to his doctor, who had his medical history on hand. He was examined and told he had a hemorrhoid. He voiced the same complaint in late 2006, and again, nothing was done. “I felt assured. I did not think it was my place to question,” said Ratermann. Referring to his physician,

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¹ This chapter is based on the presentations and discussions of Martin Ratermann, a craftsman and cancer survivor, and Jennifer Pearce, founder of Plain Language Health. Their statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

he added, “She was the M.D., and I was the woodworker.” In mid-2007, when the bleeding got worse, he was reassured again that the cause was a hemorrhoid and not a cause for concern, until the following July when he was diagnosed with stage IV rectal cancer. “I now know rectal bleeding should be taken seriously. Mine was ignored,” he said. “What a hard lesson. A whole academic health care system failed, and I nearly died because I did not speak up and ask questions. Because I finally decided to ask questions and speak up, I find myself here today.” Ratermann recalled that when he began his career as a woodworker, a noted British furniture maker told him that a good and successful commission starts out with good conversation. “So does care of your health, and good conversation involves listening and paying attention,” he said.

When first diagnosed, Ratermann was determined to deal with his cancer with as much grit and integrity as possible, and he was bolstered by the care and respect he experienced from the technicians who administered the initial set of tests and imaging scans. However, he soon had two experiences a few days apart that sent him into a tailspin. The first was with a surgeon, who told him he had the worst case of rectal cancer she had ever seen, that she was not sure she could help him, and that he was going to have to wear a colostomy bag. “I felt embarrassed, and I was not certain that I even knew what she was talking about,” he said. He left that appointment convinced that he did not want her as his surgeon.

The second negative experience came at the hands of the oncologist he and his wife went to see. The oncologist talked too fast, was brusque, and would not look Ratermann in the eye. The oncologist pronounced that he was going to resect Ratermann’s liver in 2 days, and he and his wife left the appointment shaken. When a nurse practitioner called the next day to schedule surgery, Ratermann told her he would not be coming back. “I was discouraged,” he said. “I knew I was in over my eyeballs, and I was ready to give up, but my wife disagreed. She decided to ask for some help.” A phone call to a close friend and physician in Kansas City led to an appointment 48 hours later with a specialist at the Siteman Cancer Center in St. Louis, who told Ratermann that his initial polyp removal had not been complete and that his cancer was actually a recurrence. “He pointed us in a very different direction, and everything changed after that,” Ratermann said.

Ratermann’s new surgeon explained things well and reassured Ratermann that this was not the worst case he had ever seen. The surgeon also commented that Ratermann asked many questions that most patients never posed, and as Ratermann recalled, he seemed pleased to answer them and even drew a picture of what was going to occur during surgery. Fortunately, the surgery revealed that the tumor had not spread to his liver and that the pathology reports were “the best we could have asked for.” His subsequent therapy at Missouri Cancer Associates was superb, he said, and even when he

was worn down and confused, the staff there were compassionate and caring, even proactively asking him and his wife about their concerns and worries. Communication, he said, was excellent. Even later, when he developed a fever and had to go to a wound center, the nurses and doctors there were caring. The first thing the doctor who saw him did was sit next to him, put her hand on his arm, and let him know that she and her colleagues were there to help him. “The touch of the human hand, and the tone of voice, I assure you, can have a positive effect on the process we call healing,” said Ratermann.

His family, he said, has learned that there is no such thing as false hope, and he credited the remarkable care he received from many dedicated caregivers, particularly his wife. When he recovered his strength, he obtained his medical records, wrote to the academic medical center where he was first seen, and outlined the errors in care he had experienced with the hope of preventing others from the same fate. Two months later, he met with the vice chancellor of medical sciences whose response was that it was hard to pay a primary care physician $150,000 per year.

Shortly thereafter, Ratermann received a call from the director of clinical effectiveness, who incidentally had been his primary care physician before receiving a promotion, and she invited him to bring his concerns to a meeting at the hospital. After outlining what he had experienced and what went wrong with his initial care, the head of risk management dismissed it all by calling what Ratermann experienced a complication. “I was taken aback,” he said. “I politely disagreed, everything remained cordial, and before I left, I asked if anyone says they are sorry. I did not get an apology, so even communication about how we deal with medical errors failed.”

That was not the end of his story, however. Six months later, he learned that an entry was made in his medical record showing that he had normal colonoscopy results in 2003 and 2005, neither of which took place. “A thoughtful person would ask questions about ethics,” he said. “How do you make corrections in a climate like this? We are human, and things do go wrong, and how we deal with error and mistakes is the real measure of who we are as human beings.” Noting that he has seen both the finest in health care and some things that are unacceptable, he wondered how different his family’s life would have been had his doctors taken a little more time and focused less on the bill.

“Change has to come from the top, but the catalyst for change has to come from the bottom,” he said, referring to his new and reluctant role as an advocate for patient safety. “The loss of personal privacy is now part of who I am, and I do not want to let it define me. I want to be remembered for my workmanship,” Ratermann explained. “I feel like I have achieved my goal of doing this with integrity, and mentally, spiritually, and emotionally, I have done well. This has allowed me to forgive and to harbor no hard feelings, forgiveness beyond what I was taught, but forgiveness that

sets me free.” He also recalled something that an executive of a health care system said at a conference: “Just because we know the right thing does not mean we always do it.”

Ratermann said he does his best with the physical issues he deals with now, but he feels disheartened by the medical system’s response to what he experienced. Noting that he was not looking for sympathy, he said, “I came here to be your partner, and it takes determination and spine.” He also pointed out that his current caregivers have a keen sense of what the error in his diagnosis cost him and seem determined to do everything they can to support him going forward.

Regarding the prevention of medical errors, he noted the work of Sorrel King, whose 18-month-old daughter died because of a medical error, as well as Atul Gawande, and others, who repeatedly point out that the most common cause of error is a breakdown in communication. “Why would we work so hard to be good at what we do and allow ourselves to fail because we do not communicate effectively?” asked Ratermann. “It seems senseless. It is costly to insurance companies, to business owners, and to families.” What troubles him the most, he added, is the thought that others might have done without because of what was spent on his care. “It should trouble you, too,” he said.

In closing, Ratermann said that one lesson he learned from his experience is that medicine is a healing art as well as a science. “St. Francis tells us that if you work with your hands, you are a laborer. If you work with your hands and your mind, you are a craftsman, and if you work with your hands, your mind, and your heart, you are an artist,” he said. “A number of times, I have given this talk to the medical schools, and I leave them with this thought: please do not lose your heart in your goal to heal.”

Jennifer Pearce began her story by noting that the worst part of it is that it is not unique. “Details aside, it could be anyone’s story, and I know this because I make my living talking with people just like me—regular folks with no medical training,” she said. “What we all have in common is being hurt by the very system that is designed to care for you, and I am not talking about major medical errors. It is a hurt that comes from a slow, steady erosion of confidence in people and organizations.” The one thing that makes her story different, she said, is that she has spent the past 18 years working inside health systems to remedy the problems she experienced as a patient. It is a process she likened to digging a tunnel with a tablespoon. “I think everyone in this room understands,” she added.

Over those 18 years, Pearce has learned three lessons. The first, she said, is that efficiency has been allowed to supplant empathy, something she learned in the summer of 1991 when she was battling what had been initially diagnosed as whooping cough and syphilis, then a blood cancer, and finally systemic lupus. She recalled asking the nurse who phoned her

at work on a Friday afternoon with the final diagnosis if she was going to die. The nurse did not know, but she did say that she had an elevated risk of stroke and likely would not be able to have children. Pearce then asked what she was supposed to do next, and the nurse told her that the doctor was away until Tuesday and that she should make an appointment with a rheumatologist. “The next available appointment was 3 months away,” said Pearce.

That first lesson was reinforced 10 years later after she had given premature birth to twin girls and developed serious complications. At some point, she said, staff wheeled her in her hospital bed into the neonatal intensive care unit, where the doctor began educating her about her girls, a process a family member captured on video. “He delivered the requisite detailed education directly to me, and at the end he asked if I had any questions. I looked back at him and blinked slowly, once or twice I nodded my head, and I said no,” she recounted, noting she had no memory of the episode. “In both cases, the providers had news to deliver, and each delivered it efficiently. Both got to check the box. The problem was they did so without showing empathy for their audience.” These examples and others like them, she said, have made it hard for her to trust that people in the health care system would do right by her.

The second lesson she learned is that information silos continue to stymie the continuity of care. While she accepts responsibility for managing her chronic illness every day, doing so has been made more difficult by the inability for information about her care to flow smoothly among providers, particularly on the occasions when she has had to switch doctors. “My doctors’ efforts to find vital details in my previous records become time-consuming hunts during my already too-short appointments,” she said, an experience that seems the same today in the era of electronic health records (EHRs) as it did when her records were all on paper. The result is that the burden of tracking what tests and medications she needs falls on her shoulders, and that lab result trend lines start over with each new provider, a situation she called unacceptable. “While medical record portability and meaningful use requirements could have significantly relieved patients of the burden of having to remember all the details, their promise has been hampered by the silos they were designed to bridge,” said Pearce. “These experiences made me feel like my care, past and future, was less important than the integrity of these systems’ EHRs.” What is particularly galling, she said, is that EHRs have the capability of integrating information from other systems, but that they do not appears largely to be a business decision.

Pearce called lesson three “labeling at the expense of connecting.” “Every organization I have worked in has a unique vocabulary, and health care is no different.” What labels such as “noncompliant” and “frequent flyer,” and medical acronyms such as “DVT” (a blood clot) or “OFI”

(opportunity for improvement), do is dehumanize a person and their situation, she said, which gets in the way of expressing empathy. In her case, she was labeled as high risk when it came to pregnancy, and one obstetrician said he would not touch her with a 10-foot pole. “He dehumanized my situation and made it about liability,” said Pearce. Another obstetrician, in contrast, called her situation high risk but said he was willing to try. “The risk was on me, and I accepted it,” she said, noting that her premature twins just got their driver’s licenses.

In her mind, health literacy is not just about words but about the experience of health care, raising the question of how health literacy can infuse humanity into health care. “I am talking about creating health literate health care experiences, ones where people feel better when they come out instead of worse,” said Pearce, who offered three steps for how health literacy can lead to better care. First, she said, it is necessary to align care with a patient’s needs, design workflows that revolve around the people being served, and work with patients to find the best time and place to deliver information. For example, the best time to have a patient consent to anesthesia is not when the patient is on a gurney being wheeled into surgery. “That may be the most convenient time for the anesthesiologist, but how is that benefitting the patient?” asked Pearce.

Second, the health system must shift the burden of communication from the patient to the system whenever possible, Pearce said. This requires using EHRs to their full potential and using the Health Insurance Portability and Accountability Act (HIPAA) and meaningful use requirement in the Patient Protection and Affordable Care Act (ACA) to benefit patients, as these laws intended. Information silos and an overemphasis on privacy create roadblocks. Third, it is imperative to translate labels into dialogues that reveal truth rather than obscure it, she said. As an example, Pearce said that labeling someone “noncompliant” is a shortcut that leads to a dead end, while inviting someone to share why they have chosen to not take medication starts a dialogue. “Words matter,” said Pearce. She said:

Concluding her remarks, Pearce acknowledged that none of what she suggests is easy and that it takes time and effort, but the evidence shows that doing so leads to a more human system. “Most importantly,” she said, “a humanity-driven system minimizes the harm, the burden, and the shame that too often characterizes the status quo, leaving both patients and our providers dissatisfied.”

DISCUSSION

Before opening the floor to questions, Rosof described a phenomenon he calls the “hand on the doorknob syndrome,” which is when a patient, after spending 30 to 40 minutes going through a physical examination and discussion, gets up and does not exactly leave the room, but rather lingers for a few moments with a hand on the doorknob. “If you notice this and ask the patient if there was something you missed, you find out the true reason for the patient’s visit, which you missed in the previous 45 minutes,” said Rosof. “That hand on the doorknob, the ability to communicate, is something that becomes innate for people who want to learn the methods of communication.”

Catina O’Leary from Health Literacy Media asked Pearce for her thoughts on how to stop thoughtless and lazy communication, given that the health literacy field has been trying to accomplish that task for 20 years or so. Pearce replied that in working with providers, they all say they want to adopt innovations to improve communication, but only if they do not affect their workflow. This attitude should not be surprising, she said, given that physician incentives and performance metrics are about efficiency and time spent using the EHR. “The EHRs run health care at this point, so I think the patient is an afterthought,” said Pearce. What must happen, she said, is for physician incentives to be based instead on how well they communicate with patients, which would not only benefit patients but ease the burdens physicians are experiencing from spending so much time working with EHRs.

Stacey Rosen from Northwell Health noted that there were two stories in The New York Times on the day of the workshop discussing those burdens and their effect on clinician wellness. Pearce replied that Donald Berwick, the Institute for Healthcare Improvement’s founder and current Senior Fellow, has written about the three eras of health care, starting with the paternalistic era that is ending, albeit slowly. The second era, which represents today’s health care, measures everything, regardless of whether it needs to be measured. The third, which is in its nascent stage, would create a more health literate experience. Rosof recounted another story in which Berwick was addressing his daughter’s medical school graduation class. After giving his usual commencement speech, he told the new doctors that the best thing they could to was to take off their white coats, sit with their patients, and really learn what it takes to be a physician and how to communicate with their patients.

Andrew Pleasant from Health Literacy Media asked Pearce and Ratermann how medical education should be changed so that patients do not have to experience what they went through because of poor communication. Ratermann said he did not know how to teach effective communication

skills other than to start in kindergarten and work from there. He added, though, that listening and asking questions is a key piece of being a good communicator, and being curious about the patient and putting them in the center of the conversation is a good place to start. Pearce said she would have medical schools pay attention to the work of Clifford Coleman at Oregon Health and Science University, who has developed a health training intervention for medical students (Coleman and Appy, 2012; Coleman and Fromer, 2015; Coleman et al., 2013, 2016a,b). She also recommended that physicians-in-training who are poor communicators should become specialists in a field that does not require contact with patients, such as radiology.

Cindy Brach from the Agency for Healthcare Research and Quality (AHRQ) noted that research shows that people are more likely to sue their physicians after a medical error when there is poor communication (Kachalia et al., 2010; Robbennolt, 2009) and that her agency has developed the Communication and Optimal Resolution (CANDOR) toolkit to help physicians develop apologies for errors and learn from their mistakes.² Given that there are institutions that have not adopted this type of technique, Brach asked if an apology would have made a difference to the two speakers in terms of whether they sued for malpractice. Ratermann said that he asked for an apology several times, and if there had been one, “we could have started down a totally different road.” He said that physician friends of his have told him that he would have been a model for a different approach to dealing with a series of mistakes, but instead, there was constant finger pointing and denial. As he pointed out, it is hard to correct a mistake when nobody will admit to making one. He noted, too, that when he tried to get his medical records, he had to pay $100 to obtain them, which in his opinion was an intentional barrier erected to discourage him from having those records. He also said that when he received the right diagnosis, he called his primary care doctor, who responded that he had been focusing on Ratermann’s diabetes. Ratermann is not diabetic.

In the spirit of the moment, Suzanne Bakken from Columbia University commented that as a biomedical informatician, she wanted to offer an apology for her field’s failure to develop an informatics solution that is truly more patient-centered. “We know that our current situation certainly makes it very difficult for both the patients and the providers,” said Bakken. She then asked the speakers if they had any experience with the OpenNotes movement in health care (Leveille et al., 2012; Trossman, 2013),³ and if they did, if they would comment on its implications for a health literacy agenda. Pearce said she is familiar with it and is all for anything that allows

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² See https://www.ahrq.gov/professionals/quality-patient-safety/patient-safety-resources/resources/candor/introduction.html (accessed December 24, 2017).

³ See https://www.opennotes.org (accessed December 24, 2017).

medical records to be more portable. One of the great frustrations for patients, she said, is that patient portals do not allow patients to feed information into their EHR because health systems do not trust patients to enter accurate information, even for something as simple as getting their flu shot at the grocery store. “I think anything that circumvents these ‘nervous nelly’ health systems and their data integrity issues is a positive,” said Pearce, who reiterated the common knowledge that EHRs are built as billing platforms. “Every health system in the country is trying to put lipstick on a pig and turn these EHRs into patient engagement tools, and that is not what they are built for,” she added.

Pearce then suggested that there is a huge opportunity for the health information technology field to develop proprietary or open-source products to fill that gap. One big issue, responded Bakken, is that she and many of her colleagues work at institutions that had developed home-grown EHRs with increased functionality, but that these institutions are now adopting one of the large commercial products that in almost all instances results in decreased functionality. Ratermann commented that he is the last person to talk to about EHRs and that he is a word-of-mouth person. In his case, he was fortunate that his wife knew someone who knew someone who referred him to Missouri Cancer Associates for his treatment. Pearce remarked that the health care system can and needs to do better than “care by accident.”

Earnestine Willis from the Medical College of Wisconsin thanked the two speakers for “letting us as physicians see a mirror of our system and the consequences of what can happen with these errors.” She then commented on the fact that Ratermann’s wife was his strongest advocate at a pivotal time in his journey and the importance of patients having an advocate when receiving critical information at times when it may be hard to comprehend or even hear that information. Her question to Pearce was whether the institution she worked at before becoming a consultant had a system for incorporating advocacy for patients at critical times in their care when it is easy to miss some of the finer pieces of information that are critical for making good medical decisions. Pearce said that at the time she left that institution in January 2017 there was no formal effort beyond encouraging people to bring someone with them to their appointments. In fact, the lack of such a system is why she emphasizes the after-visit summary in her health literacy work. “For those of us who cannot bring someone with us, it is the only record of what you may have missed,” said Pearce.

In her opinion, producing a health literate after-visit summary is supposed to be one of the meaningful use requirements, yet in her experience, most after-visit summaries are useless. “I think that is an area where our field can effect some change,” she said, noting that she tried hard in her previous position to get one of the major EHR vendors to add tools that

would produce better after-visit summaries only to be told that her system was the only one asking for such tools. “I think we can exert some pressure there as a profession,” said Pearce. Brach noted that the roundtable held a workshop in March 2014 on after-visit summaries and discharge instructions (IOM, 2014) and that AHRQ has funded research that will be published soon on after-visit summaries. As part of that project, the researchers did qualitative work with patients regarding what they want to see in a more understandable, actionable after-visit summary and found that there was little flexibility in the common EHR platforms to produce that type of information.

Wilma Alvarado-Little from the New York State Department of Health noted that Ratermann’s wife worked for the organization that misdiagnosed him and commented that just because someone works for a health care organization does not mean that they are going to be getting honest responses. If that is true, she said, it makes one wonder what messages people not associated with a health care organization are getting. Gwen Ratermann, Martin’s wife, pointed out that for someone like her husband or her 87-year-old mother, both of whom are computer illiterate, the idea of being able to access their own EHRs means nothing, which in her mind reinforces the importance of teaching physicians how to be good communicators.

Sochan Laltoo, a public health instructor from Trinidad and Tobago, remarked that in impoverished countries or countries where people may not feel empowered to access their own medical records, people may not be health literate enough to ask questions of their doctors and understand the answers. Given the prevalence of health illiteracy, he asked if there were any international efforts to promote health literacy. Pearce said there are, and Rosof suggested that Laltoo pick up a copy of the summary from a 2012 workshop the roundtable conducted on health literacy around the world (IOM, 2013).