Putting Patients First Through Health Literacy

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Patient as a Teacher for his Doctor

There is no doubt that the one person who will look after his own interests the best is the patient himself. You need to do your homework thoroughly, find out more about your problem, and then discuss the results of your research with your doctor. This is your right and your responsibility as well! Every honest doctor will agree that his patients are his best teachers!

When you play the Role of a Communicator

It is vitally important that you be open and honest with your doctor. When in doubt, ask questions, listen to the answers carefully and take notes. A prudent measure would be to write down your questions before your appointment, so that you do not forget important matters during the stress of consultation. Remember, the only stupid question is the one you don't ask! So, to re-emphasize, don't hesitate to ask questions! And if you don't understand the answers, the fault is not all yours; it could be that your doctor is not explaining the facts well!

When you play the Role of a Financial Manager

Medical treatment can be very expensive these days, and you must make it a point to know the costs involved. Many patients are hesitant to talk to their doctor about money matters, but this reluctance can prove to be very costly! Also, if you are claiming reimbursement (either from an insurance company or from your employer) you must make sure that you have complete records of payments made along with their receipts.

When you play the Role of a Treatment Decision Maker

You will have to decide which treatment to choose among the alternatives. Sometimes the choices are straightforward, but sometimes they can be very confusing. A good doctor will offer you all the options and help you to decide, but ultimately, you have to exercise your right (and responsibility!) to select a course of treatment. You cannot afford to leave everything to god, or to the doctor either!

When you play the Role of a Medical Team Manager

You will have to find, evaluate, select, hire - and sometimes fire - members of your medical team. As an enlightened patient, you need to remember that you are the one in charge of your body --- and that it's your medical team you are managing!

INFORMATION THERAPY AND THE RTI ACT

2nd Annual Conference

Using Information to Put Patients First in India
Being afflicted with a serious disease is a difficult period for a patient. So when Mrs Shah was diagnosed with cancer, she wanted to know everything from her doctor. “Why do I need radiation?”, “Is there any alternative?”, “What are the possible side effects of such a treatment,” “What stage of cancer is this, and will I be completely cured?”, “What is the success ratio of radiation treatment?” were some of her queries. Years ago, such questions would not even occur in a patient’s mind, and he or she would trust her doctor blindly. Even worse, many doctors would not even bother to explain the treatment options to patients. However, today, just like the RTI Act has made government officials accountable and thus enhanced the relationship between the government and the public, information therapy helps to build a more transparent doctor-patient relationship.

The Right to Information (RTI) act has come as major breakthrough in good governance. It encourages transparency and inspires citizens to be more assertive about their rights, because bureaucrats are now more accountable to the public. Earlier, some government officials abused their power with impunity. They could easily manipulate the ‘rule book’ to suit themselves, as a result of which, ordinary citizens ( who were usually in the dark about their rights) were rendered helpless. However, with the advent of the RTI Act , citizens are now in a position to ask questions – and demand written answers ! The concerned official has no choice but to respond with the needed documentation. This has resulted in a healthy respect for the average citizen among officials and bureaucrats , who now think twice about hiding information from citizens.

If Information Therapy was similarly made compulsory, this would help to improve the doctor-patient relationship as well – after all, good doctors have always been happy to share information with their patients !

Unfortunately, some doctors still do not believe in leveling with their patients. This is why patients feel they are at their doctor’s mercy, and every word from their doctor’s mouth is treated as the gospel truth. When doctors had the upper hand and were used to making all the decisions, this resulted in a paternalistic style of practice. While this might have been advantageous in certain situations, it does not fit in with today’s times. Patients today want to play a more active role in making decisions that impact their lives. They do not like feeling handicapped as a result of incomplete and insufficient information. Good doctors understand the importance of having a well-informed patient and will do all they can in their capacity to provide information therapy. Some doctors may not be so proactive, and will require patients to ask for information before they dispense any. In the US, progressive health insurance companies are making it mandatory for doctors to keep patients in the loop about any risks or complications arising from their treatment, however small or insignificant. Even better, they are actually reimbursing doctors for dispensing information therapy, and this incentive is helping to create a win-win situation for everyone !

There is a great opportunity in India today for the IRDA ( Insurance Regulatory and Development Authority) to make the documentation of information therapy compulsory every time a patient claims for medical treatment expenses against his health insurance policy. This will ensure that patients are kept fully informed , and will also help the insurance company to reduce their expenses, as unnecessary surgery and overtreatment will be nipped in the bud.

Patients have the right to be thoroughly informed about their illnesses. Doctors who invest that extra effort in providing their patients with substantial doses of information therapy initiate a positive cycle , where there is transparency in the relationship. This helps foster confidence among patients , who feel that their doctors are interested in helping them get better, and that the relationship between them is not just a monetary one. Doctors also benefit from intelligent patients who ask questions ! Healthy discussions might reveal some issues that a doctor might have overlooked, which could have resulted in a poor outcome.

Empowering citizens with the RTI Act has helped to encourage them to take a proactive role in governance, thus helping to create a more vibrant democracy. Similarly, embedding Information Therapy within every medical encounter can also help to patients to take a more active and involved role in their healthcare – and this can make for happier patients – and happier doctors!

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Your role as a Patient

While you obviously have a vital interest in your medical treatment, unfortunately, you lack the specialized medical knowledge and skills to be able to take decisions in this context alone. This is why the concept of a team - which consists of you and your doctor, becomes very important. As a patient, your responsibilities are wide and varied. And you'll need to play several "roles" at various times.

Your Responsibility as a Patient

As a patient, you have to shoulder a wide variety of responsibilities, some of which are as follows:

1. You should provide your doctor with accurate and complete information about your medical history, past illnesses, allergies, hospitalizations and medications.
2. You should report changes in your condition (however minor they may seem to you) to your doctor - don't keep him in the dark!
3. If you do not understand what your doctor says or wants you to do, you should let him know without any hesitation!
4. You should strictly follow your doctor's treatment plan.
5. You should keep your appointments on schedule, and if you cannot do so for any reason, let your doctor know well in advance.
6. You should pay your medical bills promptly!
7. You should follow hospital rules and regulations without fail.
8. You should have realistic expectations of what the doctor can do for you. Everyone would like to get well completely, but one should always bear in mind that the doctor is not a miracle worker.
9. You should help your doctor to help you! If you cannot stick to a particular treatment plan, let your doctor know, so that he can formulate an alternative plan.
10. You should maintain good health habits.
11. You should participate actively in your medical care. Patients who are highly motivated get better faster: in other words, help your body to heal it!
12. You should ask questions to clarify any doubts or dispel any misconceptions in your mind. A doctor or nurse may not know when you're confused, uncertain or just want more information. Therefore, do not refrain from asking questions.
13. You should respect the doctors and the nurses. The medical staff deserves your respect and courtesy: treat them the way you would like to be treated by them!
14. You should not ask for false medical certificates or padded medical bills (in order to get additional reimbursement).

The Ideal Doctor's Code of Practice

The People's Medical Society in the USA encourages doctors to display the following code of practice in their clinics. This code comprises are excellent guidelines for all doctors to follow, and you might consider sharing it with your doctor!

The code runs as follows:

I will assist you in finding information resources, support groups and health care providers to help you maintain and improve your health. When you seek care for specific problems, I will abide by the following code of practice:

1. I will post or provide a printed schedule of my fees for office visits, procedures, testing and surgery, and provide itemized bills.
2. I will provide certain hours each week when I will be available for non-emergency telephone consultations.
3. I will schedule appointments to allow the necessary time to see you with minimal waiting. I will promptly return your phone calls and inform you if your test results.
4. I will allow and encourage you to bring a friend or relative into the examining room with you.
5. I will facilitate your getting your medical and hospital records, and will provide you with copies of your test results.
6. I will let you know your prognosis; including whether your condition is terminal or will cause disability or pain, and will explain why I believe further diagnostic activity or treatment is necessary.
7. I will discuss diagnostic, treatment and medication options for your particular problem with you (including the option of no treatment) and describe in understandable terms the risk of each alternative, the chances of success, the possibility of pain, the effect on your functioning, the number of visits each would entail and the cost of each alternative.
8. I will describe my qualifications to perform the proposed diagnostic measures or treatments.
9. I will let you know of organizations, support groups, and medical and lay publications that can assist you in understanding, monitoring and treating your problem.
10. I will not proceed until you are satisfied that you understand the benefits and risks of each alternative and I have your agreement on a particular course of action.

Be Careful

Remember you have only one life, and you may not get a second chance to rectify a medical mishap. Many patients (or their relatives) who are victims of adverse medical outcomes, later regret not consulting another doctor, but by then the damage has already been done! The best method is to avoid a problem in the first place - by getting a second opinion!

Important point to be noted

An important point to be noted is that a second opinion should be sought under certain circumstances:

* If surgery is recommended. About 80 per cent of all surgery is elective (i.e., performed on a non-emergency basis). Recent studies have shown that one out of five operations is not really required -- what is considered 'unnecessary surgery.' A second opinion can definitely prevent you from becoming an unsuspecting victim of an overenthusiastic surgeon's knife!
* If the diagnosis reveals a rare, potentially fatal, or disabling disease. The original diagnosis could be incorrect and may need to be revised. Or, even if it is correct, there may be new or experimental treatments available at an institution specializing in the treatment of such a disease.
* If your symptoms persist unrelieved and the doctor can provide no satisfactory explanation for them.
* If the risks and benefits of the proposed procedures are not satisfactorily explained. The patient has a right to know the details about risks and the cost involved and the potential benefits of any procedure, test or surgery. It is preferable to get the relevant details in writing, so that you can digest them at leisure.
* If the diagnostic procedures seem unnecessarily complex or expensive, or both. Some doctors are prone to making excessive use of technology in borderline situations, either due to insecurity or to protect themselves against malpractice litigation.
* If the patient lacks confidence in the doctor's ability to do all that can reasonably be done. Effective treatment demands trust, and a lack of trust is as valid a reason as any other for getting a second opinion.

Other Sources for a Second opinion

You should also keep in mind that there are other ways of getting a 'second opinion' apart from going to another doctor. Presently, many sources of information can be tapped to verify and countercheck your doctor's opinion; for instance, health books and encyclopedias (all of which are available free at the Health Education Library for People, Bombay) as well as the Internet! For example, you can "Ask the Doctor" at www.flora.org/ask-doctor/, a free site which forwards your medical queries to specialists from all over the world, who then give their respective opinions on your problem.
You can also log in to our website – www.healthlibrary.com for any health related queries.

Second opinion from an Alternative Medicine specialist

Remember that it is also possible to get a second opinion from a doctor who practices alternative medicine, for example, homoeopathy or ayurveda. Such an opinion will provide a completely different perspective of looking at a problem, and you may prefer this alternative.

Excellent source for a Second opinion

An excellent source for getting an objective second opinion is the medical faculty of public hospitals - government or municipal. This source, unfortunately, has been grossly underused. The staff members here are basically academicians. Since they teach medical students and residents, they are usually well read and well informed. Moreover, since they do not have a financial stake in providing you with advice, their information is likely to be reliable and accurate. Of course, this procedure does involve the bother of waiting for a long time to get to see the doctor, but this wait is often well worth the effort!

What to tell and what not to tell your second doctor?

A crucial question is: Should you let the expert know your first doctor's opinion? Many patients do not tell the specialist that they have already consulted another doctor, because they want an unbiased opinion. However, most doctors do not appreciate patients who play games with them. It's far better to be forthright and explain to the expert that you are looking for a second opinion, so that he can explain the pros and cons of all the available options.

Looking for a Second opinion, but where?

Keeping all the foregoing factors in mind, the question then arises: From whom should you get a second opinion? You should seek a second opinion from an expert who has the courage to give you an unbiased independent conclusion. Such an expert would, obviously be difficult to find, but it's well worth searching for him!

Take a second opinion for Yourself!

However, by getting a second opinion, patients should realize that they are not casting aspersions on a doctor's competence or judgment, but are rather adopting a responsible attitude towards their own health and well-being. All patients have a right to seek a second opinion, and certain circumstances may arise in which it would be appropriate, if not mandatory, for them to exercise this right.

Anxiety for a Second opinion

Many patients also worry about getting a second opinion on their own accord. For one, they are apprehensive that if their first doctor were to find out that they have gone in for a second opinion, he may be offended. Another source of anxiety is the confusion that would result if they get differing opinions; they are worried they would not know what to do when confronted with such a situation. Most patients are quite passive and they tacitly feel that it much easier to trust their doctor and do whatever he suggests, rather than go through the trouble of getting a second opinion.

Dr.Malpani says:

I always encourage my patients to get a second opinion. As I explain to them: If two different doctors happen to reach the same conclusion, at least you know you are on the right track! However, don't always assume that just because the opinions of both doctors are identical, you are safe. For example, if you have angina and you consult a cardiac surgeon, there is a high likelihood that he will advise you to undergo bypass surgery. A second cardiac surgeon is also likely to recommend the same; after all, it's just simple financial common sense from the surgeons' viewpoint! Therefore, getting a second opinion from a non-surgical specialist (in this case, a cardiologist) can be helpful in preventing unnecessary surgery.