Making Informed Medical Decisions: Where to Look and how to Use What You Findby Nancy Oster, Lucy Thomas, Darol, Md Joseff Md
It's no secret that millions of us are more involved in our own health care decisionswhether we want to be or not. We may be looking for the latest advance that might give us an edge in survival; looking for complementary treatments to help a chronic condition; investigating whether a treatment recommendation is good medicine or cost-cutting; studying to
It's no secret that millions of us are more involved in our own health care decisionswhether we want to be or not. We may be looking for the latest advance that might give us an edge in survival; looking for complementary treatments to help a chronic condition; investigating whether a treatment recommendation is good medicine or cost-cutting; studying to understand what the doctor told us in our allotted ten- minute visit; or trying to understand if a media story or pharmaceutical ad applies to our situation.However, we're starting our search without much context of what we're looking for or understanding of how we might make best use of the array of resources. Making Informed Medical Decisions illuminates the process. Its subject matter includes:
- Tips for researching for someone else
- Reading a journal article (and understanding what it says)
- Making practical sense of statistics and risk
- Understanding variations and advances in standard treatment options
- Exploring complementary treatments
- Locating a likely clinical trial
- Making a powerful ally of your doctor
Written so anyone can access the wide array of information available, either through print material, the Internet, medical personnel, or other patients, guidelines for evaluating what is found are provided. Knowledge of patient rights, knowing how to help a family member or friend, being able to identify resources and access them using effective search strategies are included. Hypothetical questions are posed, "What are the side effects of blood pressure medication," for example, and the reader is walked through the research process. Included for each hypothetical are the questions a medical librarian might ask prior to beginning a search, places to start looking for information, in this case Medline Plus, and tips for searching. Specific things to look for are mentioned; in the case of blood pressure medication, the reader is directed to look carefully at the numbers of people in each study and where the studies took place. Keeping track of the pros and cons of taking blood pressure medication, having copies of the relevant information, and noting the sources of the information to be used again are useful for future reference and for the physician.
Four chapters are devoted to treatment options, learning how to cope and ways to get support. The final three chapters explain how to use the statistical information available and how to reach personal treatment decisions. All chapters are briefly introduced and are filled with quotes from people who have been patients and understand the process. The voices of the people, both patients and health care professionals, are helpful additions to the factual information.
In addition to chapter notes and a glossary, two appendixes are included: A is a patient questionnaire designed to assist in the initial research process; B is an impressive list of resources for access to organizations, publications, and Websites.
The authors have met their goal of helping consumers to be informed when making health care decisions. Knowing that ultimately it is the patient who must be making the decisions that affect all aspects of his or her life, this book will offer hope and opportunities to access the best information currently available.
Read an Excerpt
Understanding Standard Treatment OptionsSTANDARD TREATMENT OPTIONS are traditionally defined as therapies in current use by physicians that have proved to be effective based on past studies and physician experience. "Proven effectiveness" is the key concept in defining and understanding standard treatment.
In this chapter, we go over standard treatment options-what they are and where you find them. We cover the various forms that standard treatment can take and how to look critically at each. You will find some guidelines and questions you can ask so that you can determine for yourself whether the standard treatments seem appropriate to you.
Defining standard treatmentsStandard treatment options have several names. They are published in medical textbooks simply as treatment or as clinical practice guidelines or association guidelines. Another growing movement is evidence-based medicine, which is defined as "the explicit and judicious use of current best evidence in decisions about care of individual patients."1 Standard treatment options are also increasingly published as clinical pathways by hospitals, HMOs, and clinics.
Those publishing the standard treatment options maintain the concept of "proven effectiveness" in producing those treatment options. By gaining an understanding of what is or is not considered effective standard treatment, you have a basis for your own medical choices. You also gain a foundation for research into various alternative therapies and/or clinical trials.
There is no single standard used for developing treatment options other than generally acknowledged proven effectiveness or best evidence of a positive outcome. The treatment recommendations that are based on large, long-term studies are stronger. Those that have incorporated important follow-up of the patients receiving the treatment are stronger still. One such study is the Framingham Heart Study that has spanned the past 50 years.2 The Framingham study identified risk factors for heart disease such as high cholesterol, high blood pressure, and smoking that have all become standard guidelines today. Because the study has gone on so long, it has been able to include offspring of the initial subjects and even addresses the genetic component in heart disease. Smaller studies, not subject to review or subsequent tests of the conclusions, will rarely evolve as standard treatment. Standard treatments also vary from one country to another as well. It may be beneficial for you to compare treatments of other countries in order to determine the optimum treatment for yourself.
A woman who has been struggling with a cancer recurrence has been comparing cancer treatments in the United Kingdom to other countries:
- Our cancer survival rates in the UK are appalling-equivalent to Estonia and Poland! We find that some drugs and treatment regimens that are available elsewhere are not always available to us here. Or they are available but in a very patchy fashion. It depends on your zip code and whether you are lucky enough to live in an area where the health authority is "generous." This has been the case with Taxol-women in some areas can't get it as it's deemed too expensive!
How doctors select and recommend treatmentsThe best doctors keep up with research in their area of expertise and continue to follow up on patients. When you are in treatment, a physician will usually give you several options for your situation and explain the risks and benefits of each option. Medicine is not an exact science because each patient has unique physical and psychological profiles, and the effectiveness of a given treatment varies widely from patient to patient. There is a great deal of art in the practice of medicine.
Doctors select among treatment guidelines, critical pathways, and "best evidence" of successful outcomes for their patients, based on proven effectiveness. However, there are always limitations. For example, guidelines are always evolving and a better treatment might not yet be considered the standard. Other factors, aside from effectiveness, also come in to play.
Additional criteria are used in determining standard treatment options. Costeffectiveness is one consideration, local norms are another, and limitations imposed by insurers and HMOs now all enter into the equation. Factors such as the patient's condition, the physician's particular medical expertise, and external limitations can all impact or restrict what is called "standard treatment."
Physicians want to choose the best option for each patient. If there are costrestraints imposed by insurance guidelines or HMOs, you would want to know this. Sometimes the outcomes and risks of more experimental treatment options are not very favorable and used only as a last resort. Some minor conditions, such as a sprained ankle may be painful, but the standard treatment is usually a verbal recommendation for nonprescription pain medication and an ankle wrap, but no formal treatment.
If your doctor recommends a certain therapy, you can ask if this is the standard treatment for your condition and what other treatment options exist. If your physician is recommending a nonstandard treatment option, you will want to know why that treatment has been recommended.
A doctor explains why he doesn't always prescribe balloon angioplasty, even when it may be the standard treatment:
- Occasionally patients with severe atherosclerosis or an elderly patient will develop new-onset hypertension. In these cases we might sus
pect reduced blood flow to one or both kidneys as a cause of the hypertension. Although the standard treatment might be balloon angiography or
even surgical revascularization, the treatment that is recommended may vary with the expertise of the physicians and the sophistication of the medical center. Also, a variety of less invasive intermediate tests can be
used initially to establish the diagnosis, since there is small but real risk to angioplasty. Finally, we need to weigh the risks of the disease itself against the potential benefit of treating each individual with that disease.
Patient's conditionA number of factors about the patient will impact a doctor's recommendations, including:
- Severity of illness
- Age and physical condition
- Early versus late diagnosis (i.e., if immediate treatment is needed)
One woman who found herself in the emergency room explains the need to act quickly:
- All day I had been feeling hind of "punk" - I thought maybe I was getting the f flu At 3 a.m. the next morning, I knew it wasn't the flu. I had such severe pain in my abdomen I thought surely I would die. I couldn't even think--I hurt so badly I could only cry. Somehow my husband and my daughter got me to the emergency room. All I wanted was to get the pain to stop. I was doubled up, could barely walk, and didn't even want to think.
At the hospital, there was a swirl of activity-people asking questions, blood drawn, x-rays taken, papers signed. I could overhear snatches of conversation between my family and the staff. I didn't know most of the people who poked and prodded. They told me it was severe appendicitis and I needed surgery right then. A doctor I had never seen before was to be my surgeon. All I could say was "okay - do it now!"
I always thought if I got sick I would investigate all the options and choose the best one and then choose the best doctor Well at 3 a.m. that morning I was just very happy to be in a good local hospital with a licensed physician readily available. Research on appendicitis was not on my mind. Later I discovered I could have had a severe infection or even died if treatment had been delayed even a short while.
- When I was diagnosed with cancer, my oncologist told me I was young and that we'd treat aggressively. I guess in the world of cancer patients, I was still young at 45. I was glad I was otherwise healthy and able to handle the more aggressive treatment he recommended.
Medical expertiseThe doctor's medical experience and training impacts his recommendations. For example, a doctor will take into account:
- Known outcomes and risks of a given treatment
- Preferences for and experience with certain therapies
Having seen many "miracle" cures abandoned because of unforeseen side effects, a physician offers this explanation:
- A time-tested doctor's adage advises, "Be not the first nor the last to prescribe a given treatment." We've all seen the latest heralded "cures" become yesterday's has-been disasters due to unexpected or dangerous side effects.
It is all right not to immediately prescribe the latest treatment unless there are compelling reasons to do so. It's safer to await the "track record," especially since newer treatments are typically more expensive in dollars and potential risk than time-tested ones.
One malpractice lawsuit has more influence on medical practice than ten papers in prestigious journals.
Meet the Author
Nancy Oster is a medical writer, health care activist, Internet expert, and educator. She received her Bachelors Degree from the University of California at Santa Barbara and has written several articles for medical and health care journals. Recently, Nancy was honored in the U.S. House of Representatives for her role as the founding president of the Breast Resource Center of Santa Barbara. Nancy is also one of the founders of the South Coast Telecommunications Alliance, a forum for networking and information sharing on the central coast of California. Nancy has long been active in support of open and free information and access to health care and health information. When Nancy is not writing, she is busy preparing gourmet meals, practicing yoga, creating numerous Web sites, gardening, working on a designer quilt with friends, or traveling with her husband, Dave. Nancy and Dave have two grown children and two very active puppies. Nancy and Dave live in Santa Barbara, California. Nancy, Lucy and Darol teach an Internet Health Information course for the Santa Barbara Community College Adult Education program. They've been teaching the class for several years and have taken the class as far as the First World Conference on Breast Cancer in Kingston, Ontario, Canada and to other communities in California.
Lucy Thomas, M.L.S., is currently the director of the Reeves Medical Library in Cottage Hospital, Santa Barbara , California. She completed her Bachelors and Masters degrees at the University of Illinois in Champaign-Urbana, before moving to California. She is a distinguished member of the Academy of Health Information Professionals of the Medical Library Association and on the editorial board for Medicine on the Net. Lucy has written numerous articles for professional journals and has been a speaker at professional conferences. She has long been an advocate for free access to information and for the rights of the healthcare consumer. When not working, Lucy can be found skiing in the Sierras, sailing, hiking, gardening, attending a meeting of her book club, or taking a long beach walk with her husband, Bill, and their golden retriever, Brig. Lucy and her husband live in Santa Barbara, California. Nancy, Lucy and Darol teach an Internet Health Information course for the Santa Barbara Community College Adult Education program. They've been teaching the class for several years and have taken the class as far as the First World Conference on Breast Cancer in Kingston, Ontario, Canada and to other communities in California.
Darol Joseff, M.D., is a Board certified Nephrologist and Internist. He completed his Medical Degree at the University of Cincinnati School of Medicine and his fellowship and residency training at Harbor UCLA Medical Center, and at Santa Barbara Cottage Hospital. Dr. Joseff has written numerous articles for medical journals. He is also on the faculty of the University of Southern California Medical School and is active in teaching for the residency programs at Cottage Hospital. Recently, Dr. Joseff was awarded Teacher of the Year by the Resident staff at Cottage Hospital. Dr. Joseff has a private practice specializing in Nephrology in Santa Barbara and is on the medical staff at several hospitals. Dr. Joseff communicates with his patients and colleagues via telephone, email, listservs, and the Web. When Dr. Joseff is not practicing medicine, teaching residents, or attending a Mac users convention, he is at home with his beautiful wife, Janet, also a physician. They have two lively children and their free time is filled with activities such as soccer, hiking, beach walks and travel. Nancy, Lucy and Darol teach an Internet Health Information course for the Santa Barbara Community College Adult Education program. They've been teaching the class for several years and have taken the class as far as the First World Conference on Breast Cancer in Kingston, Ontario, Canada and to other communities in California.
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