FOR PATIENTS

Just Right: how to get the right care when you need it

Want to get the best care possible, but don’t know how? Here are some things you can do as a family member or a patient to make sure you get the care you need, and don’t get care that won’t help you.
If you are basically healthy and middle-aged or older, you will have to make choices about which screening tests you want, and which drugs you are willing to take in order to prevent conditions you don’t yet have. If you are seriously ill or suffering from a chronic condition like diabetes or heart disease, you have a host of decisions to make about tests, drugs, procedures, and surgeries. If you are in the hospital, you face all of these decisions and the added dangers, such as potentially life-threatening infection, surgical error, and side effects from medications posed by spending time in the hospital. Here are some suggestions for navigating these tricky waters:

Find a primary care doctor who communicates.Having a primary care doctor who knows you and who is willing to discuss your care in a way that you can understand is the single most important step you can take. A good doctor will listen carefully to you, and will make sure you have all the information you need to make good decisions about your health. Once you find the right doctor, stick with him or her if you can, even if your employer changes insurance companies. Having a primary care doctor who watches over your care has been shown to lead to better outcomes than if you simply take yourself to multiple specialists.

Ask questions.Think of all doctors as guides, not gods, and ask questions whenever a physician prescribes a test, a drug, or a treatment.

If your doctor recommends a screening test, such as the prostate-specific antigen test, which looks for possible prostate cancer, or a calcium screening test, which looks for calcium buildup in the coronary arteries that might or might not be a sign of heart disease, there are six questions you need to ask:

  1. How good is the evidence that this screening test will reduce my risk of dying? Many screening tests, including the PSA test and calcium screening, have not yet been shown to reduce your chances of dying from the condition for which they are screening.
  2. Is the test itself dangerous?
  3. Could the test lead to my being treated unnecessarily?
  4. Does the treatment I might face have side effects?
  5. Can I make changes in my eating habits and lifestyle to reduce the risk of getting the disease?

Your doctor may not welcome such questions, or may feel there isn’t enough time in your appointment to answer them. Don’t be deterred. Ask for another appointment that allows more time. If your doctor is dismissive, maybe you need another doctor. 
If your doctor prescribes a laboratory test, drug, procedure, or surgery, you should ask the following questions:

  1. If it’s a test, what do you expect to learn from it? If it’s a procedure, drug, or surgery, why do I need it? Drugs and procedures can relieve pain, reduce symptoms, sometimes even cure a condition. Ask your doctor how the proposed drug or procedure is supposed to help you.
  2. What is the drug or procedure? If you are facing surgery, ask your doctor to explain exactly how the surgery will be done. Ask if there is more than one way to do it. Some orthopedists use open surgery to replace a hip, while others may way to use “minimally invasive” laparoscopic techniques. Ask why your surgeon prefers one over the other. There may be multiple drugs for treating the same condition. Ask your doctor why he or she is prescribing one and not another.
  3. What are the benefits of the drug or procedure? You need to know what you will gain. A hip replacement, for example, may allow you to walk again with greater ease, but it won’t cure your arthritis.
  4. How good is the evidence that you will benefit? Have there been clinical trials to show the treatment is better than other possible treatments, or better than doing nothing? The Institute of Medicine estimates that only half of what doctors do is backed up by valid science. You need to know if the treatment your doctor is recommending is a proven therapy. If not, your doctor should explain to you why he or she thinks it’s a good idea. 
  5. What are the potential risks? Every drug and every procedure has side-effects, some more serious than others, and all major surgery poses real and potentially significant harm. Simply being in the hospital exposes you to medical error or a hospital-acquired infection. You need to know the risks so you can decide if the danger or discomfort of your disease or condition seem more serious to you than the risks of the proposed treatment. 
  6.  Is there an alternative to the drug or procedure? If you have high blood pressure, you may be able to bring it down with diet and exercise alone – and avoid the side-effects of blood pressure medicine. Before undergoing surgery for, say, shoulder pain, find out if most cases like yours resolve on their own, and how long it takes for the pain to go away.
  7. What will happen if I don’t take the drug, or undergo the procedure or surgery? Your doctor may tell you your condition will worsen, or that it could get better on its own.  You should be the one to decide if you prefer to wait and see what happens.
  8. How much will it cost? Even if you have health insurance, you may have to pay for part or even all of the treatment.

For more information about medical treatments, there are several authoritative websites. Two of the best can be found at the Agency for Healthcare Research and Quality, at www.ahrq.gov. Go to the “Consumer Health” section for information about a wide range of conditions and treatments. Another excellent source of information is the U.S. Preventive Services Task Force, also located at the AHRQ website. This task force is made up of experts who convene on a regular basis to assess the scientific evidence available for many medical treatments and tests. The USPSTF is often more conservative than many physicians, and its website can help you weigh your options.

Ask for patient decision aids.Many medical decisions depend on your personal preferences and your values. If you have early stage breast cancer, for example, you will need to choose between a mastectomy, or removal of your breast, and lumpectomy, or surgical removal of the tumor plus radiation. The two treatments are the same in terms of your chances of being cured of your cancer, but different women will prefer one over the other. To help you make this and many other medical decisions, you may need a “patient decision aid,” which may be a video you can take home or watch on the web, written material, or a short film you watch in your doctor’s office.

Decision aids now exist for a wide variety of treatments and tests, including the PSA test for prostate cancer and other cancer screening tests; breast cancer treatment alternatives; treatment options for enlarged prostate; back surgery for low back pain, and others. A handful of hospitals around the country now offer patient decision aids, along with some physicians and insurers. Ask your doctor, and if he or she does not have an aid for you, ask your employer or your insurer.

Find yourself a palliative care doctor if you or a loved one is facing major surgery. A relatively new specialty, palliative care physicians are highly trained in the control of pain. They can also coordinate among your various physicians, a crucial step whenever you are hospitalized or about to undergo any major procedure for a life-threatening condition like cancer or end-stage heart failure. Why is coordination between doctors important? When several doctors are involved in your care, they are more likely to lose sight of necessary treatments and procedures, like making sure you get antibiotics within a few hours of being admitted to the hospital for pneumonia. Multiple doctors also means multiple opportunities for error and duplication of tests, poor communication, and failure to make sure the patient receives the kind of care he or she wants. Most doctors do not call in palliative care until the patient is already in dire straits. You can help yourself by asking for palliative care early.

Coordinate your own care.Talk to your primary care doctor about making sure he or she sees copies of your medical records from all of your various doctors. Somebody besides you needs to know what all of your doctors are doing – including all procedures, tests, and drugs they prescribe. This is especially important if you are on multiple drugs, or you have a chronic condition, like diabetes or an autoimmune disorder, that requires visits to multiple specialists.
If you take multiple medications, or see more than one or two doctors, and they aren’t sharing information about your health electronically, try to keep your own health records. There are web-based records available to help you track your drugs, doctor visits, and the results of every test and every treatment, including  www.revolutionhealth.com and www.mymedicalrecords.com. Keep hard copies of your records and take them with you on every visit to a doctor or the hospital. At the very least, you should keep all of your prescription and over-the-counter medications in one bag, along with any dietary supplements you are taking, and bring them with you when you visit your primary care physician.

If you have a chronic condition, help yourself stay out of the hospital.Find out from your doctor what leads to hospitalization among patients with your condition. Ask what you can do as a patient to avoid a crisis that might send you to the emergency room. For patients with heart failure, for example, you may want to find a nurse-coach who can help you learn to monitor your weight, which can indicate when you are retaining fluid and likely to wind up in the hospital. Some doctors and health plans employ nurses and nutritionists who can help you take care of yourself. Some health plans offer free advice over the phone.

Just imagine what would be possible if we could cut out the unnecessary care in our system. Eliminating unnecessary tests, hospitalizations, surgeries, and office visits would slash our national medical bill by a third. That would leave plenty of money to provide health insurance to every American. And, most important, it would improve the quality of our health.