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Shared decision-making: working with your

doctor

In this section

Key

points about making decisions with your doctor

Don't

be afraid to ask questions

Your

values count

Learning

to deal with uncertainty

Key

points about making decisions with your doctor

Even with the best evidence from research, no one

can tell you what treatment is best for you.

It's OK to ask your doctor questions.

You may find it helpful to take a friend with you

when you go to see your doctor or to write down questions before your

visit.

You should ask your doctor what the research says

about treatments for your condition.

You should ask whether researchers studied people

like you (for example, were they the same age).

Sometimes no one knows what the best treatment is

for a disease.

Ideally, you and your doctor can work together to make a

decision about your treatment. Your doctor can help you decide which is the

best treatment for you.

For more help, see How to make the

best decisions about treatment.

Here are some things to remember when talking to your doctor

about your condition and the choices for treatment:

You shouldn't be afraid to ask questions

Your feelings about treatment counts

You may need to make decisions about treatment without

being certain about what will happen

Don't be afraid to ask

questions

Many people find it hard to ask their doctor questions.

Sometimes their doctor doesn't encourage them. Doctors always seem so busy. You

may worry you will look stupid if you use the wrong words. Or you may worry

that you will annoy your doctor by asking questions. Sometimes you may feel too

ill to take an active role in making decisions. And some people are happy just

to do what their doctor tells them.

You may feel more comfortable talking things over with your

doctor if you do some of the following things:

Write down a list of questions to take with you

when you go to see your doctor

Have a family member or friend come with you to

the appointment

Make notes of what your doctor says during your

visit

At the end of the appointment make sure you know

what your doctor has discussed with you and what should happen next. You

can say something like, " I just want to make sure I've understood

what you've told me. " Or if you are not sure, try saying, " Could

you please run through what you said to me again so I can be sure I

understand it? "

Don't be embarrassed to write down medical terms

and ask your doctor how to spell them

A doctor who is good at making decisions with you will:

Use the best research evidence

Share the evidence with you and help you understand

it

Encourage you to say what matters to you.

Many doctors encourage their patients to ask questions, and

encourage them to play an active part in deciding about their own health care.

For each of the conditions we've looked at, we've given you

some ideas of the questions you might want to ask your doctor.

Questions to ask your doctor

about treatments

Do I need to take medicine?

Will I get better without any treatment?

What are my other choices for treatment?

What does this drug do?

How long should I use it?

What are the benefits and side effects of this

treatment?

Is there anything I can do to avoid side effects?

Can I take this medicine with the other drugs I'm

taking?

When should I stop taking this drug? When should

we talk about whether I need to keep taking it?

What should I do if I miss a dose?

What else can I do to help myself get better?

How to talk about the

evidence

When you discuss the research with your doctor, ask him or

her if the people who were included in the studies are like you. Many studies,

for example, do not include women or children or people with more than one

medical problem.1

You also can't assume that the results of a study will apply to your situation.

For instance, beta-blockers

may not be as good as tablets that make your body lose water (diuretics) for lowering

your blood pressure if you are black.2

A treatment that may help someone who has a high risk of

getting a disease may not help someone who has only a low risk. If you have a

high risk of dying from heart disease, you will get more benefit from taking

drugs to lower your cholesterol (if you have high cholesterol) than someone who

does not have heart disease.3 Studies

show that to save one life, 30 people who have a high risk might need to be

treated for five years with drugs to lower their cholesterol.3 But 300

people with a low risk would need to be treated before one life was saved.

Questions to ask your doctor

about studies

Does the study give me information about what I'm

interested in?

Does it cover the risks and benefits of

treatment?

Does it have people like me in it?

Does it compare treatment with other suitable

choices?

Is the evidence reliable?

Your

values count

Just because the research says that a treatment works

doesn't mean you have to have that treatment. You need to make a decision

that's based on both the evidence and your personal preferences and values.

Here is an example of how some people prefer not to do what

the evidence suggests could be helpful.

If you have the type of irregular heartbeat that is known as

an atrial

fibrillation, you are more likely to have a stroke. There are two main

types of stroke. One happens when the blood supply to your brain is blocked,

and the other happens when there is bleeding into your brain.

Randomised

controlled trials show that taking a drug called warfarin, which thins the

blood, will reduce your risk of getting the first kind of stroke. However, it

increases the risk of getting the second type of stroke because it makes your

blood thinner. For some people, the chance of getting a benefit from warfarin

treatment outweighs the risk of the harm.

Yet many studies show that some people who would benefit

from taking warfarin refuse to take it. Even when they understand that the benefits

outweigh the risks for them, they still do not want to take it.4

Sometimes people want to have a treatment even if there is

no research to show it works. People who have life-threatening conditions such

as cancer may feel they want to try anything.5

Learning

to deal with uncertainty

Sometimes no one knows what the best treatment is for you.

People often don't realise that there is a lot of uncertainty in medicine. Not

every question about treatment has a clear answer. Even when there is good

research that shows that a drug works, the drug may work better for some people

than for others. Everyone is an individual and will respond differently to

treatment.

And there are sometimes no clear answers about screening. It

isn't clear whether healthy men should be screened for early signs of prostate cancer as

they get older. In this case, screening means testing to see if they have raised

levels of a chemical called PSA (prostate-specific antigen) in their blood.6

Not all men with high levels of PSA will have cancer. Of

those who do have cancer, some will benefit from treatment but some will get

serious complications from it. These complications may include problems in

having erections. In some men, their cancer may grow so slowly that they will

die from something else, not the prostate cancer. The problem is that no one

knows which cancers will grow fast and need treatment and which will grow so

slowly that they will not be a problem.

There is not enough good evidence to know if screening for

prostate cancer does more good than harm.

In this type of situation it is best if you and your doctor

make the decision together.

To deal with this uncertainty, some people decide to join

research studies that are looking for answers to the questions for which the

evidence is unclear. Sometimes charities fund this kind of medical research.

You could try contacting a charity that focuses on your condition to see if

they know about any research projects.

Sources for the

information on this page:

Tudor HJ. Hypertension guidelines: other

diseases complicate management. British Medical Journal. 1993; 306:

1337.

Veterans Administration ative Study Group

on Antihypertensive agents. Comparison of propranolol and

hydrochlorothiazide for the initial treatment of hypertension. I. Results

of short-term titration with emphasis on racial differences in

response. Journal of the American Medical Association; 248:

1996-2003.

GD, Song F, et al. Cholesterol

lowering and mortality: the importance of considering initial level of

risk. BMJ. 1993; 306: 1367-1373.

Protheroe J, Fahey T, et al. The impact of

patients' preferences on the treatment of atrial fibrillation:

observational study of patient based decision analysis. BMJ. 2000;

320: 1380-1384.

Crocetti E, Crotti N, Feltrin A, et al. The

use of complementary therapies by breast cancer patients attending

conventional treatment. European Journal of Cancer. 1998; 34:

324-328.

Yamey G, Wilkes M. Prostate cancer

screening: is it worth the pain? San Francisco Chronicle. January 18,

2002: 29.

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