As per the Patient Protection and Affordable Care Act of 2010 Title V, “The term ‘health literacy’ means the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services in order to make appropriate health decisions”. It is an essential set of skills required to function in the medical/health-care environment. Proficiency in basic reading and math, along with, the ability to write, compare, contrast, analyze, and rationalize are needed to describe symptoms, fill out forms, understand physicians’ analysis and directions for testing, weighing risks and benefit, understanding percentages, and interpreting treatment directions and advice. Without these skills patients at an extreme disadvantage in understanding medical conditions and treatment options. Studies have shown low health literacy to be linked to a higher risk of death and more emergency room visits and hospitalizations.
Both health care providers and patients play important roles in health literacy. Healthcare professionals must recognize that culture plays an important role in communication. The inability to effectively and efficiently listen and communicate will adversely a patients ability to make informed decisions. Healthcare professionals must also consider belief systems, communication styles, and language barriers and how they may alter interpretations and affect decision- making.
In 2007 the America Medical Association (AMA) published, Low Health Literacy: Implications for a National Health Policy looking at health literacy issues associated with older adults. Findings included:
People 65 and older make nearly twice as many physician office visits per year than adults 45 to 65. However, an estimated two-thirds of older people are unable to understand the information given to them about their prescription medications. The report also noted, “Low health literacy is a major source of economic inefficiency in the U.S. health care system.” The report estimates that the cost of low health literacy to the U.S. economy is between $106 billion to $238 billion annually. This represents between 7 percent and 17 percent of all personal health care expenditures”.
When a patient is diagnosed with an illness it is clearly to late to begin developing and mastering basic skills. Patients need to take an active role in health related decisions using the skill sets that already possess.
Some suggestions include:
-Ask a health care provider to speak in laymen terms or plain language.
-Do not hesitate to ask to have information repeated.
-Ask for difficult topics or word phrases to be written down.
-Bring along a family member or friend to help with note taking and information processing.
-Invest in a medical consultant/advocate who can help identify pertinent medical history and concerns. They will take notes, discuss risks and benefits, communicate effectively and efficiently with health care providers, help you to organize thoughts, and help you to formulate questions to enhance decision making.
You are the emotional crusader who brings positive thoughts in times of despair. You found out that a relative or close friend has been diagnosed with a serious illness and you want to provide comfort and support. As you navigate your way to their home or hospital bed take a moment to think about your upcoming visit. What will you talk about? There are key points to consider that will leave your loved one placated rather than aggravated.
Feelings of sadness, anger, detachment, loneliness, fear, and confusion often overwhelm someone who is ill. Consider letting the person set the tone of the visit. Perhaps they don’t want to talk about their condition. Remind yourself you are there for support and not to give a second medical opinion. Quiet company is conceivably the rule for the day.
Your body language can speak volumes over your words. Ask the person where they would like to you to sit. Lean toward them slightly and keep eye contact. Listen, engage, and avoid distractions as much as possible.
If they want to complain about how awful they feel, be a good listener. You might be able to relate to their symptoms if you have undergone similar treatment but the conversation is about how they feel right now and not how bad you felt in the past. As you listen, do not assume you know what they will say next. There is no need to rush the conversation. Pauses in conversation are not necessarily a cue to speak, but rather, might be a moment of reflection or deep thought.
Minimizing what they are experiencing by saying things like, “Don’t worry” or “You will be fine” are not helpful. It is not necessary to give advice about how to handle their situation. Let them figure it out and maintain a sense of control. It is appropriate to offer help, however, if the person can still support activities of daily living, like getting a glass of water or walking to get a sweater, let them do it if they want to.
It is important to recognize that as a caregiver, relative or friend of someone who is ill, you may need your own emotional support system. Support groups and licensed professionals are good sources to turn to. Medical consultants/advocates can be tremendous resources. They can provide an extensive knowledge base about disease and illness, help navigate treatment recommendations, and be emotionally supportive of the ill, the caregivers, and their families.
Breast cancer awareness is dedicated to the month of October. However, with more than 200,000 new cases diagnosed in this country per year, approximately 2,600 of whom are men, one month of awareness is hardly efficient. Take responsibility for your own body. If you notice a change in your breast such as a lump, skin dimpling, nipple discharge, or other abnormal finding, contact your primary care doctor for further evaluation. Not all cancers can be felt by physical examination so be diligent with your annual breast imaging and follow up with the results. Additional mammograms, ultrasounds (sonograms), and MRIs may be recommended if physical exam confirms your suspicions or routine annual imaging is abnormal.
A radiologist or surgeon will usually perform a biopsy of the abnormality. If cancer cells are identified, an appointment with a surgeon, particularly one who specializes in breast disease, is advised. A primary care physician can make a referral to a surgeon who specializes in breast disease. If the surgeon believes chemotherapy is needed prior to surgery, as in some cases, the surgeon will usually recommend you to a medical oncologist (a doctor who prescribes chemotherapy). Check with your insurance carrier to see if you need a referral for the specialists. Treatment options for breast cancer may include surgery, radiation therapy, chemotherapy, hormone therapy, immunotherapy and targeted therapy. Before choosing a treatment plan, it is important to evaluate the risks and benefits each option offers.
To help prepare for meetings with a doctor and for surgery, organize your thoughts and gather information so that you are better equipped to make educated decisions. Your treatment plan will be influenced by several personal factors like age, lifestyle, pre-existing medical conditions, personal beliefs, geographic location and the specifics of your disease. The healthcare provider makes recommendations and shares information with you based on studies that were found to be helpful for most people. Ultimately any treatment you receive is your decision.
A new diagnosis, or one of recurrent disease, often brings chaos to the calm and weakness to the strong. Emotional unrest easily compromises the ability to think clearly and make informed decisions. Organized thoughts are inconeivable. Absorbing provided information may become difficult and, therefore, it is recommended to have someone accompany you to your appointments. They may help you remember your concerns by referring to a prefabricated list, ask additional questions, take notes, and most importantly be emotionally supportive. Don’t despair if you family or friends are busy or live far away. Advocates and consultants can help you through the process.
Below are some basic questions to help you to organize your thoughts and gather information so that you may better make the right choices for you.
When making an appointment:
Ask if anything should be submitted to the office prior or brought to the appointment such as pathology reports, pathology slides, X-rays and reports, and procedure notes.
Ask if there is any paperwork that needs to be filled out in advance.
Write down, to the best of your recollection, the course of events that led you to coming to see the surgeon/specialist.
Write down key Personal/Medical/Surgical history.
Make a list of all of your medications including vitamins and supplements and the amount that you take (the dosage).
Make a list of all of your allergies and the reactions.
Compile a list of questions to ask your doctor.
Bring additional paper and a pen to take notes, write additional questions that might occur after your visit, which can be addressed with your doctor at a later date.
Bring someone along if possible for moral support, to ask questions and to take notes .
It is holiday time and many people will venture home to see loved ones. While enjoying the hoopla and festivities, the expedition is an ideal opportunity to take a look at aging parents and relatives. Changes may be shockingly apparent if several months, or more, have passed since your last visit. Parents may not want to burden their grown children with their ailments and frailties. Often the elderly deny shortcomings and changes. When a senior’s cognition is intact fearing the loss of independence is enough to hide any shortcomings that warrant a visit to the doctor.
Physical defects are easier to identify but behavioral changes may also signal illness. Whether subtle or obvious, underlying disease should be considered. Treatable medical issues can develop into a crisis if not attended to in a timely manner. Recognizing and addressing the issues are the first steps in identifying and treating a possible serious condition.
Listed below are some findings that suggest a parent, or relative, might have a medical issue. Pay attention as to whether the changes are new, requiring more immediate evaluation, versus stable over many years.
Taking time to observe senior relatives requires patience. Be compassionate rather than confrontational. Their awareness of changes may leave them feeling vulnerable, anxious, and fearful which may make seeing a physician or specialist more challenging. Offer to assist your parent or relative in making a medical appointment. Consider accompanying them to their doctor visit, or have a relative, friend, or medical advocate escort them. Compile pertinent information prior to a doctor’s appointments especially if the senior has cognitive impairment. Write down a thorough medical history including medical problems, surgeries, medications, supplements, and allergies, and any changes you are seeing in the person.
There’s no better gift than taking the time to help take care of the ones who were there to take care of you.
Fear, a human emotion triggered by a perceived threat, is a basic survival mechanism. An automated fight or flight response ensues if danger is seen as imminent. Prolonged fear, whether due to a true or perceived threat can be debilitating and even incapacitating. When diagnosed with a serious illness or condition requiring surgery, most will concede that fear is overwhelmingly the resulting emotion. “Will they find something?”, “Is it curable?”, “What about my family?” appropriately become the focus of thoughts. The body cannot tell fear from stress as similar changes at the cellular level occur.
Fear is the result of a series of bodily processes. Hormones, like epinephrine (also known as adrenaline) and cortisol are released in response to stress. Bodily functions like digestion, immune function, and fertility slow down or cease. A complexity of brain functions cause an inability to focus your eyes (such as on written instructions) and hearing often becomes muffled. A healthcare practitioner’s explanations and recommendations become obscured and blurred. Key points are easily missed resulting in information inadequacy and difficulty making educated decisions. Hear rate increases to bring more blood carrying oxygen to muscles (ready for the fight or flight stress response) and can be very distracting. Cortisol is released from the adrenal glands to help maintain blood sugar. Elevated sugars are good for short term stresses but not as much for long terms. Extended periods of elevated cortisol can suppress your immune system and decrease brain cell function, which impairs memory. Changes in the brain often lead a stressed person to make impulsive, erratic, and non-rational decisions, literally out of their thinking control. Fear and stress result in anxiety which has been shown to cloud thoughts, making it difficult to communicate effectively and efficiently. Ultimately fatigue and depression set in again hindering rational thinking, impairing judgment, and causing memory problems.
Hearing you have an illness, disease, condition requiring medical intervention is distressing. Realizing that you might miss crucial information, because you cannot focus on a discussion with your doctor, is absolutely frightening. When making decisions about your healthcare and treatment options irrational and impulsive thinking is a detriment. As illustrated above the inability to process information is not entirely the patient’s fault. Some suggestions to maximize an efficient exchange of information between a patient and their healthcare provider include:
-Ask the provider to speak in plain language.
-Do not hesitate to ask to have information repeated.
-Ask for topics, word phrases, and treatment options (with risks and benefits) to be spelled out.
-Review notes again and again to help make decisions.
-Bring a family member or friend to help with note taking.
-Invest in a medical consultant/advocate who can takes notes, help analyze risks and benefits, communicate effectively and efficiently with health care providers, help you to organize thoughts, identify important points, and ask questions on your behalf.