It’s that time again, another birthday. No train rides for me today given my adventure a few years ago. How quickly it seems that these birthdays come and go. Because healthcare concerns all of us, and is something we encourage our patients to be mindful of and monitor, I thought I’d reflect on a patient’s healthcare experience today.

As I try to understand more the complexities of healthcare, impending changes and transformations in delivery systems, and evolving requirements that are thrust upon us almost daily and pose numerous hurdles and obstacles, I can appreciate the challenges many health care providers have in just making a living. Much of the work I do is in the area of behavioral medicine. I am used to communicating with many specialists (e.g. PM&R; neuro; ortho; PT; chiro; radiology), reading their reports, looking at all kinds of medical records, reports by insurance company IME doctors and consultants, hospital records, and legal documents pertaining to proceedings that impact the health care patients receive and determinations of permanence and degree of disability.

Many of my patients lack the ability or savvy to provide detailed aspects of the treatment they receive. Below I explain more fully health literacy and mental health literacy. Many patients are overwhelmed by frequent visits and various kinds of medical tests and procedures. They don’t understand terms, findings, or the pros and cons of recommended treatment procedures such as different kinds of injections and surgical procedures, and are not sure what to report or to whom to report how they feel. Many entertain erroneous beliefs, misinformation, and uncertainties as to outcome (let alone best and worst case scenarios), likelihood of recovery, how much recovery, time frame of recovery, and functional limitations impacting ability to return to work and tend to ordinary ADLs, or possibility of having to seek vocational training or education to work at something else, and perhaps even never to be able to work again. Many state that they want to be how they were before. Many insist upon having assurances that an intervention (especially surgery) will be successful. Many want to be given a percentage as to likelihood of recovery or extent of recovery.

I’d like to share the experience of a highly verbal, well-educated and detail-oriented patient who had to seek medical attention after some bouts of shortness of breath. He described a disjointed course of care and treatment after a few visits to a health care facility that left him feeling anxious and insecure and worried about his well-being. He also had begun to experience a sense of a foreshortened future. With sarcasm and holding up his hands the patient stated that one day they look at your right pinky and another day your left pinky. This patient meticulously had written down his symptoms to go over with the doctor. I usually tell patients to do this so as to not forget, and encourage them to self-monitor and jot things down after an appointment. He stated that the first appointment with the PCP was brief, preceded by seeing the medical assistant who only took cursory notes. He was puzzled by the brief questionnaire that routinely is administered to assess depression and possible suicide risk in that he was not given an opportunity explain answers and had to answer yes or no so the assistant could enter the responses in the computer. The medical assistant was unable to take an EKG despite several attempts, and the PCP told him he’d have to return another day as it was near closing time. If unfamiliar, this is (Continued on the next page) PAGE 13 a 12-lead EKG. Proper protocol calls for prepping the patient and explaining the procedure. Placement of the leads is crucial; improper placement may result in erroneous readings, which of course, in the area of cardiac health can have grave consequences. It struck the patient that the doctor visits lasted 15 minutes. Have others experienced this? A modern, cost-saving medical care approach reduced to 15 minutes? Empirically validated? Perhaps the most important appointment, a cardiac workup, was scheduled about a month and a half down the road. The cardiologist’s schedule was very limited and he was super booked (overbooked?).

The patient reported that he decided to go to the ER during the holiday season because of continued symptoms and feeling increasingly anxious. He stated that the ER experience was very different than the health care center experience. He felt well-treated and listened to. And knock on wood, the tests were negative. He said that the ER physician told him that his experience at the health care center was not unique and that cost saving measures called for quick treatment and minimal use of tests that were expensive. Armed with an ER visit, the patient was able to have his cardiac appointment moved up significantly. He also obtained a full copy of all medical records. I always encourage my patients to obtain records. Some have them scattered, folded all over, in random order, creased, stained, and ripped. Some don’t have the vaguest idea what they did with them. Some tell me that they gave the records to other doctors or to their lawyers and did not ask for or make a copy.

At the beginning of this brief essay I stated, “Many of my patients lack the ability or savvy to explain in detail aspects of the treatment they receive.” If an articulate, well-educated patient can go through this, what must it be like for less educated patients and far less medically knowledgeable, and the less assertive and less vocal about expressing their discontent when treated patronizingly or like third-class citizens? And even worse for unempowered and disenfranchised patients where language, cultural, and financial barriers are prevalent, and access to providers limited because of geographic and insurance restrictions.

There is a wealth of material in the area health literacy. According to http://health.gov/communication/literacy/quickguide/factsbasic.htm, “health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions… Health literacy is dependent on individual and systemic factors: • Communication skills of lay persons and professionals • Lay and professional knowledge of health topics • Culture • Demands of the healthcare and public health systems • Demands of the situation/context Health literacy affects people's ability to: • Navigate the healthcare system, including filling out complex forms and locating providers and services • Share personal information, such as health history, with providers • Engage( in self-care and chronic-disease management • Understand mathematical concepts such as probability and risk. A Patient’s Healthcare Experience People with limited health literacy often lack knowledge or have misinformation about the body as well as the nature and causes of disease. Without this knowledge, they may not understand the relationship between lifestyle factors such as diet and exercise and various health outcomes.

Culture affects how people communicate, understand, and respond to health information. Cultural and linguistic competency of health professionals can contribute to health literacy. Cultural competence is the ability of health organizations and practitioners to recognize the cultural beliefs, values, attitudes, traditions, language preferences, and health practices of diverse populations, and to apply that knowledge to produce a positive health outcome. Competency includes communicating in a manner that is linguistically and culturally appropriate. For many individuals with limited English proficiency (LEP), the inability to communicate in English is the pri barrier to accessing health information and services. Health information for people with LEP needs to be communicated plainly in their pri language, using words and examples that make the information understandable. Only 12 percent of adults have Proficient health literacy, according to the National Assessment of Adult Literacy (emphasis added). In other words, nearly nine out of ten adults may lack the skills needed to manage their health and prevent disease. Fourteen percent of adults (30 million people) have Below Basic health literacy. These adults were more likely to report their health as poor (42 percent) and are more likely to lack health insurance (28 percent) than adults with Proficient health literacy. Populations most likely to experience low health literacy are older adults, racial and ethnic minorities, people with less than a high school degree or GED certificate, people with low income levels, non-native speakers of English, and people with compromised health status. Education, language, culture, access to resources, and age are all factors that affect a person's health literacy skills.”

What can we do, as health professionals, to increase the chance that our patients understand what we are telling them? There is something known as the Teach-Back Method: • A way to make sure you—the health care provider—explained information clearly; it is not a test or quiz of patients. • Asking a patient (or family member) to explain—in their own words— what they need to know or do, in a caring way. • A way to check for understanding and, if needed, re-explain and check again. • A research-based health literacy intervention that promotes adherence, quality, and patient safety. (http://www.teachbacktraining.org/using-the-teach-back-toolkit) Mental health literacy is highly relevant to our profession. Briefly, mental health literacy: …has been defined as “knowledge and beliefs about mental disorders which aid their recognition, management or prevention. Mental health literacy includes the ability to recognize specific disorders; knowing how to seek mental health information; knowledge of risk factors and causes, of self-treatments, and of professional help available; and attitudes that promote recognition and appropriate help-seeking.” (https://en.m.wikipedia.org/wiki/Mental_health_literacy)

A most interesting study on mental health literacy was published by The British Journal of Psychiatry in 2000. The authors concluded that: If the public's mental health literacy is not improved, this may hinder public acceptance of evidence-based mental health care. Also, many people with common (Continued on the next page) PAGE 14 A Patient’s Healthcare Experience (Continued from previous page) PAGE 15 mental disorders may be denied effective self-help and may not receive appropriate support from others in the community. (http://bjp.rcpsych.org/content/177/5/396) Recent research on cross-cultural aspects of mental health literacy …validated measures of MHL in European American and Indian samples. The results lend strong quantitative support to the MHL model. Recognition of symptoms of mental illness was a central variable: greater recognition predicted greater endorsement of social causes of mental illness and endorsement of professional help-seeking as well as lesser endorsement of lay help-seeking. The MHL model also showed an overwhelming cultural difference; namely, lay help-seeking beliefs played a central role in the Indian sample, and a negligible role in the European American sample. Further, collectivism was positively associated with causal beliefs of mental illness in the European American sample, and with lay help-seeking beliefs in the Indian sample. These findings demonstrate the importance of understanding cultural differences in beliefs about mental illness, particularly in relation to help-seeking beliefs. (http://journal.frontiersin.org/article/10.3389/fpsyg.2015.01272/full) Additional References and Resources Mental health literacy. Public knowledge and beliefs about mental disorders A. F. JORM The British Journal of Psychiatry Nov 2000, 177 (5) 396-401; DOI: 10.1192/bjp.177.5.396 A Mental Health Literacy Database: http://www.scattergoodfoundation.org/literacydatabase#.VoCADIAo7rd A comprehensive Journal of Mental Health article published in April of 2014 pertains to measuring mental health literacy: Measuring mental health literacy – a review of scaledbased measures (http://tinyurl.com/jqpnsxc) The Mental Health Literacy Scale (MHLS): A new scale-based measure of mental health literacy. (http://www.ncbi.nlm.nih.gov/m/pubmed/26228163/) Roy Aranda, Psy.D., J.D. is President of Long Island Psychological Consulting, P.C. where he specializes in behavioral health, personal injury, and PTSD and performs evaluations in several forensic settings. He is President of New York State Psychological Association and member-at-large on the SCPA Board. He can be reached at braindocr@aol.com.

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