Most of us will get very sick at some point in our lives, and knowing what to do and who to call in your health plan can help you feel more prepared and less afraid. There are ways to make sure you get the care and support you need if you get very sick.

Choose a Health Care Advocate

Choose a family member or trusted friend to be your health care advocate or “surrogate.” This is someone who can help you talk to your doctor and speak up for you if you are feeling too ill or upset to do the job yourself. If possible, bring this person to your doctor visits so he or she will know about your illness.

Tell your advocate about your health care and any living will, health care power of attorney, or health care advance directive you have. In a living will, you state your wishes about the type of health care you do and don’t want. For example, your living will might state that you don’t want to be kept on artificial life support. In a health care power of attorney, you name someone to make health care decisions for you when you are unable to make those decisions for yourself.

A health care advance directive combines both a living will and a health care power of attorney. It gives you more complete protection. Your advocate and your doctor should know about your wishes.

Care for Chronic Illnesses

Cancer, heart disease, asthma, diabetes, and arthritis are examples of chronic illnesses. These are serious illnesses that can continue for a long period of time. If you have a chronic illness, your health plan will coordinate your care and send you to certain doctors and hospitals for care. It is especially important for you to work together with your doctor to get good care.

Here are ways to learn about your illness and the care your plan provides:

• Check out the web sites of large national health organizations that deal with your illness. Examples are the American Heart Association, the American Cancer Society, and the American Diabetes Association. They can help you keep up to date on the latest news about your illness. These groups can also often help you find doctors and clinics that have experience in treating your illness and connect you to support groups.
• Learn the treatment guidelines for your illness and keep up to date on any new treatments. Talk to your doctor about them to find out if they would be right for you.
• Ask if your health plan uses a case manager to help with your care. A case manager is a doctor, nurse, or other health professional that coordinates treatment plans for patients with special needs.

Hospital Care

You might need to go to the hospital at some point in your life. It’s best to know about your plan’s hospital rules before you get sick. Before you go to the hospital:

• Call your plan's member services department or read your member handbook to learn which hospitals are part of your plan's network.
• Learn how to get hospital care approved before you go to the hospital for non-emergency care. Your plan usually must okay your hospital visit in advance.
• Ask your doctor which are the best hospitals in your plan and which have had the most experience and success in treating your illness. If you need surgery, find out how often the doctor has performed that kind of surgery. Often the more a doctor performs a certain kind of surgery, the better the results. Also find out if the hospital performs a large number of the kind of surgery you will be getting. Again, this usually leads to better results.
• Find out how the hospital is rated by national, state and consumer groups. The higher the rating, the better. Be sure the hospital is accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO).
• Ask to be sent to a hospital outside your plan’s network if you and your doctor feel this hospital will give you the best care. Before you go, always check to see if your plan will pay for the costs of going out-of-network.

Emergency Care

You can go to any nearby hospital for emergency care even if that hospital is not part of your plan network. But know how your health plan defines an emergency. Your “emergency” has to meet your plan’s meaning of “emergency” or it may not pay.

One accepted definition of an emergency is whatever a "prudent layperson" would judge to be serious or life threatening. This means that a reasonable, non-medical person would consider the situation very serious. Many states make health plans use the "prudent layperson" rule. Find out how your health plan defines an emergency.

If you have a health emergency:

• Go to your nearest hospital emergency room.
• Ask a family member or friend to call your health plan and let them know you are in the hospital emergency room. This will help make sure that your health plan will pay for the visit.
• When you feel ill or have hurt yourself but are not sure you need care right away, call your plan’s 24-hour help line or your doctor’s after-hours answering service. If your plan has no help line, call the plan’s after-hours number. The nurse or doctor can help you decide if you need medical attention right away.

Out-of-Town Care

When you are out of town, be sure to let your plan know right away about any care you get from a doctor or hospital that is not a part of your plan. Generally, routine care is not covered if you are out of your plan’s service area.

Rehabilitation, Nursing Home, Home Health, and Hospice Care

Disagreements are common over what rehabilitation, nursing home, home health, and hospice care services a plan covers. If your doctor says you need any of these kinds of care but your plan refuses to pay, check your plan’s member contract and ask them to reconsider their decision. If this doesn’t work, you can file an appeal.

Care as Part of a Clinical Trial (Research Study)

Your doctor might want you to try a treatment for your illness that is still being studied. This means the treatment or drug has not yet been approved by the U.S. Food and Drug Administration. The treatment might be called “experimental.”

Talk with your doctor to find out if there are clinical trials, or research studies, experimental drugs or procedures to treat your illness or disease. Your doctor will want to know who is conducting the studies and whether they show some promise of helping you. Here’s some information on clinical trials:

• Be aware that many experiential treatments don't work. You may be better off with a standard treatment that is tried and true.
• If it is a research study, you might get a placebo rather than a new kind of medicine. A placebo is not medicine; it might be a sugar pill that a doctor prescribes to reinforce a patient's expectation that he or she will get better.

Other things you will want to find out about a clinical trial are what tests you might have, the potential risks and benefits of being in the trial, and how the study will work.

If you are interested in a clinical trial:

• Talk to your doctor and your plan's member services department to find out what you need to do to get your health plan to help pay for you to be in a trial. The plan might be willing to pay for routine patient care costs, for example, but not costs that are part of the research study.
• You or your doctor might need to write a letter to your plan asking that it pay for you to be in a clinical trial. If the plan refuses to pay, think about appealing the decision.
• Talk to the study leaders who are running the clinical trial and see if you can participate at no cost to you. Check with advocacy or support groups that help people with your illness to see if they know how you can be part of a clinical trial at little or no cost.

AARP Resources

AARP’s Guide to Prescription Drugs
A wide array of resources to help you wisely use medications.

Checklist: 20 Ways to Identify the Local Hospital That's Best for You
AARP reports on how to check on the quality of care in local hospitals.

Nursing Home Evaluation Checklist
This easy-to-use checklist helps you find a good nursing home.

End-of-Life Issues
Find a variety of articles such as “Financial Powers of Attorney” and “Talking About Your Final Wishes.”

Additional Resources

U.S. Agency for Health Care Research and Quality (AHRQ)
Gives guidance on getting care in "Now You Have a Diagnosis: What's Next?" and "Your Guide to Choosing Quality Health Care."

MEDLINEplus
From the National Library of Medicine, abstracts from medical journals and answers to your health questions.

ClinicalTrials.gov
The National Institute of Health provides information about clinical research studies.