Weighing the benefits and harms: information for patients

You may find the following information useful to share with patients who would like to understand more about weighing the possible benefits and harms of treatments. You may also find some ideas to facilitate shared decision making.

Every treatment has risks as well as benefits. The best treatment for you may be different from the best treatment for your friend or neighbor. We all have individual needs, and different things matter to each of us.

Doctors should base their treatment recommendations on what the best available research tells them. This is called practicing evidence-based medicine. It means your doctor is using evidence from medical studies that will have looked at what happens to many more people with your condition than any one doctor will see.

Key points to remember when choosing treatments

Look into all your treatment options.
Make sure you understand the benefits and harms of treatments and how they might affect you personally.
Make sure you have enough information to make a choice.
Make sure you understand the benefits and harms of deciding not to have treatment.

You and your doctor should talk about your options for treatment and make a decision together about the best treatment for you. This is called shared decision making.

There are several questions you should ask before deciding on any treatment.

How involved do I want to be in making decisions about treatment?

Research suggests that if you take part in deciding what treatment you have, you're likely to recover more quickly than if you don't take part in decisions.[1] It is even more important to play an active role when doctors don't know which treatment works best.

Also, your doctor may not always know what is important to you. They may suggest one type of treatment when you would prefer another, for example because of possible side effects, how often the treatment needs to be taken, or whether it is a pill or shot. Discussing all your options with your doctor means that you can make an informed decision on what is best for you.

What will happen if I don't have treatment?

Many common health problems, such as colds or headaches, go away on their own. But some health problems may get worse if you don't have treatment, such as diabetes and high blood pressure. You can ask your doctor what will happen if you don't have treatment, but sometimes your doctor won't know what will happen.

What are my choices for treatment?

Check out all your options
Your doctor may suggest that you make changes to your lifestyle before trying medication or other treatment. Lifestyle changes are things like exercising more, eating a healthy diet, and stopping smoking.

If you make changes to your lifestyle, you may be able to avoid taking medication or having other treatment. For example, exercising more often and cutting back on how much alcohol you drink may help lower your blood pressure. But if you don't want to exercise, it's best to be honest with yourself and your doctor, as you may need medication sooner.

There may be several different treatments available. If your doctor prescribes one treatment, ask if there are others. Is having an operation a possibility? Are there other treatments besides medication or surgery? You may be able to try treatments such as physical therapy or acupuncture. It's good to know about all the treatments that might work. This will help you choose the treatment that is best for you.

Listen to other people
You may also want to hear about what other people with your condition have chosen to do and what their experience has been. But remember that just because something hasn't worked for a friend doesn't mean it won't work for you and vice versa.

What are the benefits and harms of each treatment?

All treatments have possible benefits and harms. Common medications available over the counter, such as aspirin and acetaminophen can have side effects. Even complementary or alternative treatments (such as herbal products or vitamins) can be harmful. Just because something is 'natural' does not necessarily mean it is safe. Remember: you always need to balance the possible benefits with the possible harms.

Sometimes you may hear about a possible new side effect from friends, media, or social media. You should always ask your doctor about these, and if you are already taking medication make sure you talk to your doctor before stopping it. If you are considering adding any new treatments you should also discuss these with your doctor as there may be harmful interactions - even with herbal products, supplements, or traditional medicines.

How do the benefits and harms balance out for me?
What matters is whether you think that the benefits outweigh the risk of any side effects. Everyone is different. You need to decide what benefits and harms are important to you.

Here are some things to consider:

Your personal situation: Does the treatment have side effects that will be tough for you to live with? For example, maybe you have small children and can't take pills that make you sleepy.
How you have to take the medication: Maybe you don't like taking pills and would prefer to use a skin patch.
Your preferences for treatment and what you expect from it: Would you find it difficult to live with the risk of any serious side effects, even if the risk is small? Would you be happy with a slightly less effective treatment if it meant avoiding a particular side effect? What's the most important thing you want the treatment to do? If you have heart failure, for example, what is more important to you: to breathe more easily at night or to have less swelling around your ankles?
How you cope with side effects: If you have high blood pressure, for example, you may decide that you can put up with the annoying dry cough caused by some medications. For you, the benefit of the treatment (lowering your risk of heart disease and of having a stroke) might outweigh the side effect (the coughing). But many people with high blood pressure don't feel ill. It can be harder to put up with side effects from drugs when you don't feel ill. For example, if you feel well but your pills make you dizzy, you may not want to put up with that side effect. But if you have a chest infection you may put up with the diarrhea that's caused by the antibiotics you're taking. You should talk to your doctor before you stop taking any medication. Sometimes another treatment may work just as well and have fewer side effects.
How big the benefit may be: Treatments don't always cure you. You may decide that it's not worth taking a drug because the possible benefit is not big enough. You need to make sure you fully understand what the benefit of a treatment is before you stop it. If you have high blood pressure, you may think the pills you take every day are a waste of time. But if you stop taking them, you may increase your risk of having a stroke or a heart attack.
Your age: This may affect the balance of benefits and harms. For example, if you are 40 and your hip always hurts because of osteoarthritis, you may want to weigh the benefits and risks of having your hip replaced. If you have a hip replacement your pain will go away and you'll be able to get around better. You won't have to take painkillers all the time. But your artificial hip may need replacing after 10 years to 20 years, as it may wear out. You also have to weigh the risks of the operation.
Your sexual activity: Some medications or operations may interfere with your ability to have sex. Your doctor will be able to discuss this with you and it is important to consider the impact this would have on you when weighing the different options.

Do I know enough to make a decision?

To make well-informed decisions you need reliable information about how likely it is that a benefit or a side effect will happen to you.

If your doctor makes vague statements like, "The risks of this operation are small," then you probably need more information. Is there a 1 in 100 chance the surgery will cause a stroke or a 1 in 1000 chance? What your doctor considers a small and acceptable risk may be unacceptable to you.

The way statistics like these are described to you can make a difference to how you feel about them. If you are told that a treatment will cut your risk of having a stroke by 50 percent (what doctors call a reduction in relative risk) this may sound great to you. But if this 50 percent reduction actually cuts your risk of having a stroke over the next five years from 2 percent to 1 percent (a reduction in absolute risk), then that doesn't sound quite so great.

Similarly, hearing that using a drug doubles your risk of developing leukemia in 20 years may sound scary. But if your risk of getting leukemia is small to start with (say, a 2 in 100,000 chance), then even if the risk is doubled, it is still very small (4 in 100,000). However, if you are worried about any risk of getting leukemia, even this risk may be too high for you.

When deciding on treatment, here are some of the questions you might ask

What will happen if I don't have treatment?
What are my choices for treatment?
What are the risks and benefits of each treatment?
How do the risks and benefits balance out for me?

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References

Arora NK. McHorney CA Patient preferences for medical decision making: who really wants to participate? Medical Care. 38(3):335-41, 2000.