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Knowing How to Make Medical Decisions Is Key When You Have a Chronic Illness

Knowing How to Make Medical Decisions Is Key When You Have a Chronic Illness


When you’re newly diagnosed with any serious illness, you’ll be forced to make decisions that could have life or death consequences. You need to know all your treatment options, the likely long-term outcomes, all side effects, and other short- and long-term risks for each option. You want to be very sure that you’ll be better off with treatment than without, and that any treatments you choose are the best ones available. You should read whatever you can, and ask questions of other patients and your doctors.

Educate yourself.

The first step is to educate yourself about your condition. You can start by researching organizations who have experts on your diagnosis. For example, if you have cancer, you can go to the National Cancer Institute (NCI) website. Another good resource is PubMed, which provides free access to MEDLINE, the National Library of Medicine’s database of citations and abstracts. It’s a type of search engine for medical literature. Search the list for the article you want, click on the title, and PubMed will display the abstract. If you need the whole article, you can click on a box in the upper right corner of the screen. While you may have to pay for some, free articles are also available. Learn as much as you can, and write down your questions.

Connect with other patients.

You can get information as well as emotional support by connecting with other patients. Look for local support groups for your particular condition, or for online groups. When I was dealing with breast cancer, I got an enormous amount of information and support from other patients.

Prepare questions for your doctor.

Having a basic understanding of your condition as well as a list of questions will help you interact more responsibly with your doctors. You’ll be able to ask better questions and evaluate whether you’re getting quality answers. While questions will vary depending on your condition, there are three basic questions to ask:

  • What are all the treatment options available, which are recommended, and why? If there are options your doctor did not mention, bring them up.
  • What is the expected outcome for each option? How can I improve the chances of a good outcome? What would you do if you were in my situation? Don’t be afraid to ask further questions to get a better idea of what to expect for your recovery.
  • What are all side effects and short- and long-term risks associated with each option, and how can I minimize side effects? Bring a list of risks to make sure the doctor covers them all.

Evaluate how the doctor treats you.

Evaluate how the doctor treats you, especially if you have a chronic condition that will mean working with the doctor over time. You want a doctor who makes you feel safe. Does s/he treat you with respect? Does s/he take the time to answer all your questions thoroughly and thoughtfully? Something that’s important to me is whether the doctor will respond to questions promptly via email.

Seek a second opinion.

It can be important to get a second opinion or more. Take the time you need. Doctors do not necessarily agree about treatment options for each patient, and you want to be confident that your doctor has chosen the best option for you. Don’t worry that getting other opinions will offend your doctor. Most of them expect it, and many of them will even offer referrals. You can also get referrals from other patients, patient advocates, organizations, and websites that specialize in your condition. If your first and second opinions don’t agree about your diagnosis or treatment, or if you still don’t feel you are getting the best possible advice, go for a third opinion, or more. Your comfort level, the treatment options proposed, and medical expertise should all be considered when making your decision.


Before getting second opinions, check what is covered by your insurance. Some cover or even require second opinions, while others don’t; and some will limit you to certain doctors or hospitals.

Vet your doctor.

Finally, check your doctor for board certification and red flags such as malpractice claims and disciplinary actions. A good place to start is, a website run by the Federation of State Medical Boards (FSMB). FSMB represents the 70 state medical and osteopathic regulatory boards within the United States, its territories and the District of Columbia. Enter the name of the physician you want to check, and the website will tell you the doctor’s education, license, and whether there are actions against him/her. If there are actions, click on the link to their state board to find out more information.

You can also check patient online reviews. WebMD provides information on its website about,, and All three provide patient ratings of doctors, but only lets me read the patients’ comments that explained the ratings, which I found very helpful. However, the use of patient reviews is controversial, and some physicians require patients to sign agreements stating that they won’t share their experiences online. I also use, and my experience has been excellent, often even better, than recommendations from friends and family. However, Yelp has no information about disciplinary actions, and it’s not clear whether the others do, either.
In addition, ask the doctor how much experience s/he has with your condition and ask for references. Doctors should maintain a roster of satisfied patients who are willing to talk about their experience.
All of this may seem like a lot of work, and it may be too much for a minor medical condition that is easily treatable. However, if you have something chronic, or life-threatening, or hard to diagnose, then the time you take is going to be well worth it.
This post was written by Janet Maker, Ph.D. – the author of the award-winning guide, “The Thinking Woman’s Guide to Breast Cancer: Take Charge of Your Recovery and Remission.”
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