The Secret of Great Health Care
Chapter 1: Chronic Disease: What is your Role?
Chronic disease, defined as disease that persists, causes about 70 percent of the deaths in the United States (1). The impact of chronic disease will continue to increase as the population ages. Arthritis, heart disease, high blood pressure, stroke, lung disease, Alzheimer’s disease, depression, diabetes and osteoporosis are common chronic disease that leads to depression, disability and death.
Chronic disease is very common in the older population. One-hundred and thirty-three million Americans live with at least one chronic disease. Heart disease is the leading cause of death in the United States (1).
The goal of this book is to help those afflicted with chronic disease to live as healthily as possible. By understanding your disease, you will be better able to partner with the health care system to assure your disease is being managed properly. Proper management of a disease is not the sole responsibility of the doctor or the patient, but a team effort. This book will give you a basic understand of common chronic diseases. It will focus on your role in managing chronic disease.
Chronic disease affects everyone differently, it is important to understand how the disease affects you. Having a basic understanding of the disease is a good step, but only a starting point.
Twelve common diseases are looked at including their causes, signs and symptoms, how the disease is diagnosed and treatments. Most importantly each chapter will explain your role in managing the disease. It will help you work with your doctor to fully understand and manage the disease.
The end of each chapter will provide steps to help assure you are getting optimal treatment for each disease. Each chapter provides a list of questions that each patient should be able to answer about his or her disease. If you are unable to answer each question, discuss each question with your doctor. Chapters provide self-monitoring forms, checklists and ways to monitor your disease.
Whole books have been written about each chronic disease. The goal of each chapter is not to provide a complete understanding of the disease but assure you are taking health care responsibility. Acute versus Chronic disease
Acute health problems typically begin suddenly with a single cause, are of short duration and respond to a specific treatment. With the resolution of the acute illness, normal health typically returns. Diagnosis of acute health problems is typically easy. Diagnostic testing is helpful in determining the cause of the problem. The health care provider is instrumental in diagnosing and treating the illness.
Common examples of acute illnesses are pneumonia, appendicitis or a urinary tract infection. Pneumonia is typically of sudden onset, caused by bacteria, easily diagnosed and treated with antibiotics. After treatment and cure of the disease a return to normal life is typical.
Chronic health problems are slow in onset and progressive. The disease often lingers on with no ending and cure is rare. The health care professional’s role is to partner with the patient to help manage the disease. The patient’s role is much more important in the management of chronic disease when compared to acute illness. Without management of the chronic condition between doctor and patient the disease will progress and disability and death will ensue. Chronic disease and disability
Richard is a 67-year-old retired carpenter who is afflicted with diabetes, chronic lung disease and arthritis. He has been a smoker his whole life and has poor control over his diabetes.
Over the last year John has been less active because he is more short of breath with activity. He no longer exercises and uses the wheelchair to get around. With increased use of the wheelchair, his lung disease worsens. Now, as he tries to walk, he is short of breath when only walking about 20 feet.
In addition, he has poor control over his diabetes and is experiencing a progressive neuropathy. Neuropathy is damage done to the nerves from high sugar levels. This neuropathy causes him significant pain and makes him less likely to walk and care for himself.
Limited mobility has led to increased stiffness in his joints. His arthritis causes him severe pain in his knees and hands. He is no longer able to button his shirt, open packages or write.
The poor control of John’s chronic conditions has led to increased disability. His chronic conditions are responsible for his inability to dress himself, write letters, walk more than 20 feet, fix dinner and groom himself.
Chronic disease leads to disability that limits independence. Disability makes it exceedingly difficult for individuals to care for themselves. Activities such as bathing, cooking, eating, dressing, using the toilet, performing housework, managing money and running errands becomes increasingly difficult as disability increases. It is essential to manage chronic diseases appropriately to decrease disability.
Chronic disease is one of the leading causes of disability. Heart disease, joint diseases, lung disease, diabetes, and stroke are not only chronic diseases but also leading causes of disability. Chronic disease and depression
Chronic disease is a highly correlated with depression. Adjusting to the demands of the illness is taxing, as chronic disease often limits what the individual can do. Chronic disease limits independence, changes lifestyle, changes the way the person interacts socially or how one feels about themselves. Rates of depression are about two times as prevalent in those with chronic disease. Depression is a chronic disease in itself, but those afflicted with other chronic diseases need to be aware of depression. If you are afflicted with chronic disease, you need to be screened for depression and treated if necessary.
Depression is a risk factor for worsening chronic disease. It aggravates the illness, makes pain and fatigue worse. Depression is also associated with social isolation which is may perpetuate depression.
Chronic diseases most commonly affected by depression include heart disease, Parkinson’s disease, stroke, cancer and diabetes.
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Symptoms of depression |
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A combination of medications and therapy or either therapy alone can treat more than 80% of the cases of depression. The act of taking health care responsibility has the potential to limit depression. Health care responsibility empowers individuals and increases their ability to cope with disease. What can you do?
Chronic disease causes many problems. You need to partner with the health care system to actively manage them. Do not count on the health care system to take responsibility for managing your disease. The health care system will help, but if you want to avoid depression, disability and death, you need to be an active, responsible health care consumer.
Becoming knowledgeable about disease is an important part of having a successful health care experience. Individuals must have a basic understanding of his or her disease. The better you understand your diseases the better you can partner in your medical care.
No one has a greater interest vested in your well being than you. Physicians manage very busy office practices and may overlook some important aspects of your care. It is imperative that you help your health care providers give you the care that is needed to prevent death and disability.
The purpose of this book is to help you track your chronic diseases. This book supplies a plethora of forms to help this venture. After reading this book you will have the tools and skills to monitor important parameters to treating these diseases. Diabetes – a chronic disease that can be managed with health care responsibility
Diabetes, a common chronic disease, requires strict management to prevent complications. Diabetics are commonly cared for by specialists called endocrinologists. It is not unusual for the busy endocrinologist to forget to run some of the recommended tests or assume that the primary care health care provider is taking care of these tests.
To prevent complications, diabetics need to have a blood test called a hemoglobin A1C - which looks at long-term blood sugar control - run at least two times a year. In addition, cholesterol levels, blood pressure, and kidney function needs to be monitored closely (specifics will be explained later in the book). Diabetics should also have dilated eye exams on a routine basis. Adequate control of the blood sugar is critical to controlling the disease and an accurate record of blood sugar readings needs to be reported to the health care provider so the disease can be managed properly.
Because of the multiple tests that need to be run and the variety of health care providers responsible for these tests, it is not unusual for something to get missed. If the patient is practicing health care responsibility, and follows the simple steps provided in this book, he or she is overseeing the care to assure all screening and treatments are in place.
At this point you may be saying, "I didn’t go to medical school, my doctor did. My doctor needs to know all of this and make these decisions." You are right; most doctors do know this information. But you must also ask yourself, "Why are so many patients not medically managing according to standard guidelines?"
There are many answers for this question.
Whatever the reason for recommended treatments or screenings not being done, it puts patients at risk. Patients who are empowered with knowledge and feelings of camaraderie with their health care provider are more likely to receive optimal medical care.
This book will help the health care consumer question the doctor to assure all recommended treatments and screenings are being carried out. It does not require a medical degree to partner with your doctor. An educated well-organized consumer can help direct the doctor to provide you with the best medical care possible.
The appendix includes multiple chronic disease tracking forms. The explanations of these tracking forms are in the corresponding chapters. All of these forms will not need to be filled out be each reader; they are only needed if the reader has that corresponding disease. Personal Health Care Responsibility
This book looks at the management of common chronic diseases. It focuses on understanding the diseases and understanding your role in managing them. The first step in managing chronic disease is maintaining a personal health record, detailed in Improve Your Communication: How Talking Can Improve Health Care.
Chronic disease significantly increases your risk of suffering poor health care. Those with multiple chronic diseases utilize the health care system more than those who are healthy. Seeing multiple health care providers increases the risk of suffering some of the complications of the American health care system. Being an expert in your health care is more critical than ever.
If you have not already done so, read Improve Your Communication: How Talking Can Improve Health Care and develop a personal health care record. Once you have your personal health care record set up your ability to follow the steps in this book will be much easier. Without the personal health care record, you will be unable to completely and concisely communicate with the health care system.
Personal health care responsibility can have a significant impact on the treatment of chronic disease. Health care responsibility takes many forms including exercise, good nutrition, avoiding tobacco and tracking health care. Health care responsibility involves three factors: knowledge, organization and communication.
Twelve common diseases are presented in this book and after reading each chapter you will have a basic understanding of each disease. Each chapter in this book provides questions for you to discuss with your doctor to help you personalize your disease. Learning self-management skills improves your health. Self-management involves understanding your disease and what you need to do to manage the disease. The end of each chapter provides steps to help you self-mange your disease.
Chronic disease is deadly, so learn to manage it appropriately. Look for others with similar conditions – often you will not need to look outside of your family – to get support with coping and decision-making.
Utilizing the steps and information in this book will help you communicate with your doctor. Continually educate yourself about the disease. Many websites and resources are outlined in the last chapter to help you stay up to date on the latest research. Partnering with your doctor and managing your disease appropriately will help prevent complications and improve quality of life.
Organization is the process of putting information in a form that is easily accessible. The personal health care record is one way to organize your information. Each chapter in this book provides a method to help you organize information about each chronic disease that you have.
If you are knowledgeable and organized, communication is easy. Questions are listed in each chapter of the book to assure you can ask your doctor questions to help you not only understand your disease, but to help assure that your disease is being managed according to guidelines.
Management of chronic disease is a partnership between you and your health care provider. Chronic disease is managed with healthy lifestyle, disease monitoring, and healthcare screenings. Working with your doctor is vital to assure disease is managed and disability and death are limited. To optimize control of chronic disease follow these steps.
