Feeling unwell? Reading is half the battle won

Sometimes patients ask me: "Doctor, if I am paying the fees to see the top specialist, who presumably knows everything there is to know about my medical problem, then why do I need to take the time and trouble to inform and educate myself? Can't I leave everything upto him?"

I agree it's much easier to do this. When you are ill, the last thing you want to do is "homework" about your problem. You'd rather conserve your energies in getting better than in researching your problem -- and isn't that what you are paying your doctor for? Why duplicate his efforts? There are also the unexpressed fears that:

• You may not be smart enough to make sense of what you find ("biology was my worst subject in school")
• The information may confuse you ("I cannot even pronounce these Greek and Latin medical terms, forget making sense of them")
• The conclusion you come to may be at odds with what your doctor recommends, which will then put you in the uncomfortable position of having to challenge your doctor and make a final decision
• The worry that your doctor may get upset if you ask too many questions.

Unfortunately, ignorance isn't always bliss! While your doctor maybe a medical expert and may know a lot about your disease, you are the expert on yourself!

He cannot read your mind or figure out what your preferences are, unless you tell him. Yes, this does involve doing some work -- but it's a worthwhile investment of your time and energy.

This decision is too important to outsource to someone else -- no matter who the other person is, and how much you trust him/her.

In fact, a well-informed patient and a well-informed doctor play a complementary role. It's not antagonistic -- after all, you are both on the same side!

What strengths does the doctor bring to this partnership? Most of these are obvious.
He has

• clinical experience;
• clinical judgment;
• understands the jargon;
• knows all the specialists and experts in this field;
• is detached and can provide a professional opinion.

However, every doctor does have certain weaknesses, which you need to be aware of.
He may:

• Have a hidden agenda (for example, his focus maybe on maximising his income, rather than your personal well-being).
• Be too busy to spend enough time thinking about your problem. This is a major issue if you have an illness which is complex or rare.
• Have a bias. For example, surgeons are much more likely to advise surgery rather than conservative treatment. A famous cardiac surgeon once threw a patient out of his consulting room when he asked him if angioplasty was better than bypass surgery! He said, "Why waste my time coming to me unless you want surgery?"
• Not be up-to-date. Many surgeons are so busy operating, that they do not have time to keep up with recent advances in medicine.
• Not be aware of other options available in alternative systems of medicine.
• Be unwilling to refer you to a specialist, as he does not want to lose income.
• Not know much about you as a person or what your personal preferences are.

As a patient, you have certain limitations too.

• When you are ill, you are likely to be emotionally distraught, which means you may not be able to think rationally.
• Since the jargon is unfamiliar, you may need to read the same material repeatedly, before it starts making sense to you.
• You may be so worried about making the wrong decision, that you may be paralysed into inactivity.
• Since you may have never done this before, you may be unsure how to proceed, since this is unfamiliar territory.
• Your doctor may intimidate or bully you into agreeing with him, rather than respect your opinion or judgment.
• You may get very little social or family support because you are "thinking out of the box" and it's not considered to be acceptable.

However, you do have a lot of valuable inputs to provide. What are your strengths and what can you do optimise your role?

• Take the time to explore multiple options. You can do a lot of research -- and since you do not have any preconceived notions or limitations of time, you may be able to craft a unique solution which is optimal for you.
• You know yourself and what situation you are in. How much are you willing to spend? How far are you willing to travel? Are you happy with what is available locally? Are you willing to take a gamble on an expensive but unproven treatment; or are you content with what the standard treatment options are?

Decision making is the most important skill in medicine -- and while your doctor can lay out all your options, only you can decide which option is the best for you, based on your personality, philosophy and background.

There are always going to be multiple choices and because it's such a complex process, how can the doctor possibly know what is best suited to your particular needs? The answers to all these questions are very personal and individual, which is why your inputs are so important.

In any medical encounter, there are four possibilities.

1. Poorly informed doctor and poorly informed patient. I think this is true of the vast majority of medical encounters, but because most medical problems are self-limited and get better on their own, it does not adversely affect the outcome most of the time.

2. Well informed doctor and poorly informed patient. This is a very common scenario, when the patient leaves everything up to the doctor and allows him/her to decide. Fortunately, since most doctors are competent and professional, the outcome in this situation is usually quite good for most patients.

3. Poorly informed doctor and well-informed patient. This is becoming increasingly common. Many patients are now very well-read; and know a lot about their options. They will often make the decisions for themselves -- and get their doctors to endorse these. While some doctors are happy to oblige, others may take offense at this role-reversal.