Chronic kidney disease

Making hard choices

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Chronic kidney disease, which gradually makes it harder for your kidneys to filter waste from the blood, progresses slowly and silently. Its earliest stages have no symptoms. In its most advanced forms, called stages 3 to 5, it is more common than type 2 diabetes or cancer. Yet nearly half the almost 17 million people who have those forms are unaware of it. The number of people with stage 5, or end stage, kidney disease—when the kidneys are beyond saving—has climbed steadily for 30 years.

People with chronic kidney disease usually have other health problems too, such as diabetes or high blood pressure. And it can cause anemia, bone disease, heart disease and other health problems. So proper care can be complicated and can often include seeing several specialists, for many years. Even when the disease is treated carefully it can get worse, and may lead to the need for dialysis or a kidney transplant.

But if you or a family member are on that path, choosing among the tests and treatments along the way won’t always be straightforward. Some of the decisions will be challenging: You might not even want or need some of the tests, treatments or procedures you may be offered.

Below, we describe four important examples where you, your family, and your doctor should carefully discuss the benefits and risks of treatment.

ANEMIA DRUGS

One important choice can arise if blood tests detect anemia, or too few red blood cells. Anemia, which is common in chronic kidney disease, can make it hard to breathe and make you tired.

Drugs called erythropoiesis-stimulating agents, or ESAs can help the body make new red blood cells. When the drugs—which are sold under the brand names Aranesp, Epogen, and Procrit—first became available, doctors used them to treat even kidney-disease patients who did not yet have serious anemia. They hoped that this aggressive approach might help prevent problems later by increasing red blood cells to normal levels.

But research now shows that approach doesn’t help people live longer or reduce the risk of heart attack or stroke. In fact, when the drugs are used aggressively—to raise the hemoglobin level (a measure of red-blood cells) to normal levels—the risk of death in patients from heart problems (including heart failure and heart attacks) and of strokes may actually increase.

In addition, ESAs are very expensive, costing hundreds of dollars per dose. Even with Medicare coverage, patient co-payments can be more than $1,500 a year.

Bottom line: You should generally consider ESAs only when you have symptoms of anemia, including breathlessness and fatigue. In addition, to make the drugs worthwhile, those symptoms should be accompanied by very low hemoglobin levels, which is generally considered under 10 g/dL. If you and your doctor decide to try an ESA, you should aim for a dose that keeps your hemoglobin level at the lowest level that both minimizes the need for blood transfusions and eases your symptoms.

For instance, you might be able to tolerate a lower hemoglobin level if your heart and lungs are healthy. On the other hand, you might need to aim for a higher level if you have heart trouble or certain other health problems.

INTRAVENOUS CATHETERS WHEN YOU ARE IN THE HOSPITAL

Having chronic kidney disease can sometimes affect the decisions you make about treating other health problems you might have.

For example, if you’re in the hospital, a catheter that is placed in the inner elbow and threaded up a vein until it reaches the heart can make it easy for nurses and doctors to draw blood and give drugs and helps you avoid needle sticks for blood draws or other IVs for medications. But these “peripherally inserted central catheters,” or PICCs, can sometimes lead to problems for people with chronic kidney disease.

That’s because it is important to protect the veins in your arms in case you ever need hemodialysis. The best way to do hemodialysis is through an access point called an IV fistula, where a surgeon joins an artery to a vein, usually in your forearm or upper arm. But PICC lines cause scarring in veins that can make it impossible to use them later for hemodialysis access.

Bottom line: Some medical circumstances, such as the administration of chemotherapy, can require doctors to place a PICC line. But if you have kidney disease that’s advanced to stage 3 or higher and a doctor says you need a central catheter placed in your arm, you should ask for a second opinion from a kidney-disease specialist. In many cases, it is possible to place the catheter in veins in your neck instead.

DIALYSIS

If your kidney disease progresses to the point that your kidneys are on the brink of failure, longterm dialysis is one of the treatment options. It helps make up for some of the functions of the kidneys, such as filtering out waste and keeping a safe balance of water and salts in the blood. But it’s not right for everyone with advanced kidney disease.

In some cases, dialysis might not do much to help you live longer, ease your symptoms, perform daily activities, or stay independent. That’s particularly true the older you are, and if your kidney failure is complicated by heart disease or other conditions that shorten life expectancy.

In a study of more than 3,000 nursing home residents, for example, more than half died within a year of starting dialysis, and most of the survivors experienced a rapid decline in their ability to do routine tasks on their own.

In addition, starting dialysis at an early stage of kidney failure—a practice that’s become widespread—provides no benefit.

Finally, hemodialysis can be burdensome. It often requires trips to a dialysis center, usually three days a week, with each treatment session lasting three to five hours. Nausea, fatigue, and headaches are common.

In surveys of older adults on chronic dialysis, more than half say they regret starting the treatment. Many say they chose dialysis only because their doctor wanted them to.

Bottom line: The decision to start longterm dialysis should be part of an individualized, shared decision-making process between you, your family and other caregivers, and your doctor. You should discuss your goals and preferences with your doctor, and ask for a full explanation of the benefits and risks of dialysis. In addition, discuss how the treatment fits with your desires, and what to expect if you decide not to pursue dialysis.

CANCER SCREENING IF YOU ARE ON DIALYSIS

Routine screening tests such as mammography, colonoscopy, and Pap smears can save lives by detecting cancers while they are in an early, treatable stage. But many people on hemodialysis might prefer focusing on more pressing health problems, like heart disease and infections, and eliminate cancer screening tests, which they might not need. That’s because those other health problems pose a much greater, and more immediate, risk to most people on dialysis than does cancer.

Moreover, advanced kidney disease can have effects on the body that make cancer screening tests less accurate. For example, kidney disease can cause breast calcifications that look like possible tumors on a mammogram. Those findings can lead to additional, unnecessary tests, such as biopsies, and increased stress and worry. In addition, preparing for a colonoscopy by fasting and taking bowel cleansing preparations can worsen malnutrition and cause dehydration as well as imbalances in water and salts, all of which pose more risk if you are on dialysis.

Bottom line: You should make an individualized decision about undergoing routine screening based on your cancer risk factors, symptoms and expected survival on dialysis.

For instance, screening could be worthwhile if you have a family history of colon cancer and you are awaiting a kidney transplant that will significantly increase your life expectancy. And young women who are not experiencing serious complications from dialysis could continue routine Pap smears.

But if you are not a candidate for a transplant and are dealing with complications of kidney disease or other diseases that limit your life span, cancer screening is very unlikely to improve your quality of life or your survival. In those cases, you might reasonably choose to skip the cancer-screening tests.

Using This Information

This information is provided for you to use in discussions with your health care provider. The content is for educational use only and is not a substitute for professional medical advice, diagnosis, or treatment. Unfortunately, we cannot help you with individual medical questions. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard, avoid or delay in obtaining medical advice from your doctor or other qualified health care provider because of something you have read in this report. Use of this report is at your own risk. Consumer Reports, American Society of Nephrology (ASN), ABIM Foundation, and their distributors are not liable for any loss, injury, or other damages related to your use of this report.

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Published by Consumer Reports © 2012 Consumers Union of U.S., Inc., 101 Truman Ave., Yonkers, NY 10703-1057. Developed in cooperation with American Society of Nephrology for Choosing Wisely, a project of the ABIM Foundation. Portions of this report are derived from ASN's “Five Things Physicians and Patients Should Question” list. © 2012 American Society of Nephrology. For more information, go to www.asn-online.org/choosingwisely.

09/2012