Are patients dumb ?

I had a very interesting conversation recently with a friend of mine. He is a doctor who practices in a government hospital , and it was amazing how different our perceptions about the intelligence levels of our patients was.

I feel that patients are smart and very capable of making their own decisions for themselves. My worldview is that patients have a lot at stake and will do their best to understand what's happening to them and would rather make their own treatment decisions, rather than leave everything up to the doctor. I believe that if patients cannot understand what I'm saying the fault is mine – this means I'm not doing a good job with explaining , and need to try again. I have created a number of audiovisual aids and use these frequently in order to teach my patients about their infertility problems and the treatment options. Not all my patients are CEOs – many are illiterate and uneducated – and we try to teach everyone who comes to us.

My friend , on the other hand , believes that patients are not smart enough to understand about their medical treatment options. He feels that most patients would rather not break their heads trying to make sense of the complexities and nuances of medical decision-making, and are quite happy to let the doctor make these decisions for them

I think both my friend and I are reasonable, intelligent people - and yet we have such markedly different worldviews. The reason for this is that we deal with completely different patient populations. My patients are often articulate, smart CEOs of companies , who are used to deciding for themselves . They routinely exchange e-mails with me. He , on the other hand, has to deal with the masses of the unwashed majority within an outpatient setting in a public hospital where he has to see over 30 patients in the space of two hours.

I can sympathize with the pressures which he needs to work with. But just because his patients come from a lower social economic status does not mean that they are dumb ! In fact his patients are likely to be far more street smart. They live under conditions of poverty and deprivation in which I would not be able to survive for even one week. I think we need to give credit to the ability of our patients to understand for themselves ; and we need to acknowledge that is part of our job description to create educational materials for our patients. I think it's ironic that I spend so much time and money creating educational materials for my patients , who are already quite well informed and capable of accessing the Internet and getting tons more information if they want to . Isn't it tragic that he has not spent any time or energy in creating educational materials for his patients who need these far more, because they don't have any access to these materials at all.

He actually has the resources and the time and the energy to do so because he works in a teaching hospital and has lots of medical residents and medical students who work for him. I just wish doctors would accept that part of the job description involves educating patients and would be willing to spend the energy in order to do so.

Ironically, his creating educational materials would have a far better return on investment as compared to anything I can do , because he sees so many more patients ! However , he feels he's so busy providing clinical care to the patients he has to see on a daily basis, that he cannot find the time to do so. I think this is just a question of setting priorities and deciding that it makes more sense to treat patients as intelligent partners so that they will then be able to do a better job , rather than to complain about a paucity of resources. Let's not forget that patients are the largest untapped healthcare resource and we need to be able to give them the tools so that they can behave intelligently

I think the only reason doctors think that patients are dumb is because we treat them as being dumb; and we don't make any effort in order to try to get them to become smart. ( Or maybe smart doctors have smart patients and dumb doctors have dumb patients ?) This is a tragedy but it's actually an opportunity in disguise ; and I do hope that the next generation of younger doctors and entrepreneurs will take up this challenge !

Why patients need to do their homework !

I saw a patient today who had been taking treatment for the last two years; she had had irregular cycles which is why her doctor had put her on medicines for ovulation induction. However, she had not done any tests to find out whether her tubes were open or not !

When I asked her – “ Why haven’t you done a hysterosalpingogram ( HSG) to check your tubal
status ? “, the answer was one which I’ve heard many times in the past – “I didn't do it because my doctor didn't tell me to do it “. I explained to her how important this basic test is - that you really can't proceed with treatment without establishing whether the tubes are open ; and just because the cycles are irregular does not mean that we can automatically assume that your tubes are fine .

She got very upset and started blaming her doctor . If it's such a basic test, then why didn’t my doctor tell me to do it ? I don't think that's a satisfactory answer anymore in this day & age, where there is so much information available on the Internet for patients , that patients who are interested can easily educate themselves and arm themselves with the right information, rather than leave everything upto their doctor.

Blaming the Doctor doesn't really help anyone - and the damage which has been done to her by wasting her time is something for which she's the one who's paying the price - not the Doctor. It's important for patients to do their homework - not doing your homework can prove to be extremely expensive I think the problem is patients tend to underestimate their intelligence . They think doctors are extremely smart and know everything . Yes, doctors know quite a bit - but you are smart too , and you need to become an expert on your personal problem. You don't need to become a doctor , but you should be finding out about all your options and understanding what your choices are , so you can discuss these intelligently with your doctor .

Doctors are human , and they can make mistakes ; but expert patients , when they partner with their doctor will make sure that the doctor doesn't allow errors to occur , or things to fall in between the cracks .

The problem with modern medical imaging

There is no question that medical imaging is one of modern medicine's most dramatic success stories. With today's MRIs scans we can image practically every part of the body with
stunning clarity and make diagnoses which were possible only at the time of doing a postmortem in earlier days. However, being able to probe into the body’s hidden recesses and get extremely clear pictures of the interior has actually created its own set of problems.

Let me explain. Let's look at a patient who has a lower back pain. Now if you have a back pain ( which most of us have had at some point in our life ), we learn to live with it. We take painkillers to deal with it when it becomes acute ; and do exercises and yoga and physical therapy to help us to get better. Lots of these problems are self-limited and will get better on their own , no matter what – sometimes with bed rest, sometimes with cold compresses and sometimes with physical therapy. However, when it becomes acute, or when your wife starts worrying that you’re not improving , you go to a doctor .

Your doctor obviously needs to do something more than what you already tried - something more than the standard home remedies , so he sends you for an MRI scan, to make an “accurate diagnosis” . Now the MRI scan will give you beautiful images of your intervertebral discs and the spinal cord – and will invariably show that you have a prolapsed intervertebral disc. Your doctor will be very pleased with himself – “ See ! I made the right diagnosis . This is the reason for your backpain !” Since his job is make a diagnosis , this gives him a thrill, because he's identified the problem with the help of medical imaging . Not only is the doctor happy with himself , his patients are also extremely impressed ! The doctor made the right diagnosis – and the MRI confirmed it. The patient can see for himself , in clear black and white , exactly what his problem is on his own scan.

However , because doctors are so focused on diagnosing problems , they actually don’t realize the downside of all these imaging results. Once the patient has seen a prolapsed intervertebral disc on his MRI scans he now stops focusing on his back pain and starts worrying about this lesion. He treats himself as a patient, someone who’s “ broken “ his back ; or someone has a weak back , and needs to rest – someone who can't play tennis or do the regular physical work out he used to in the past (when he had back pain , but before he had done the MRI scan. ) Once he's done an MRI scan , he now has a mental image that his body is broken , so that it doesn't work properly . He thinks of himself as being an invalid , and can't function properly anymore.

The tragedy is that these medical imaging procedures cause patients to focus on the problem rather than on getting better - and unfortunately, there's very little doctors do about this. Rather than sit and explain to the patient that a lot of these lesions will regress on their own; that they have a dynamic natural history ; that the body can heal itself and that many will get better on their , they will often advise the patient to repeat the scan every six months , to see how well the lesion is healing. Patients will often comply , just to see how well their disease is doing. The reality is that a lot of these lesions seen on the images have no correlation with either the symptoms or the progression of the disease ; and while they make great pictures for the doctor’s album they often don't help the patient at all !

Adoption - the old and the new

Adoption is a great way of building families for infertile couples. This is an option which is been available through the ages , and many infertile couples feel that in case their IVF treatment cycles fail , they can always adopt a baby. However, the reality is that adoption has actually become much harder than doing IVF treatment !

This is because there just aren’t that many unwanted babies available for adoption anymore. This is true even in developing countries such as India, where women are becoming more educated and are no longer having unwanted pregnancies because use contraception ; and will terminate unwanted pregnancies . As a result, there are very few babies who are given up at birth or abandoned, which means there just aren't many babies left for adoption anymore.

This is good , because you don't want babies to be abandoned , but what happens to all the infertile couples who want to adopt babies ? Where do they go ? The fact remains that waiting list are now routinely anywhere from 2 to 3 years long - and even after being on the waiting list, there’s no certainty that couples will get the baby which they want.

The good news is that technology has come up with a clever solution , so that instead of doing a post birth adoption of a child, it’s now possible to do an in utero embryo adoption. This actually has a number of advantages as compared to traditional adoption . For one thing, there are no waiting lists because frozen embryos, which have been donated by other infertile couples who have got pregnant and don't want any more babies , are fairly easily available all over the world . Even better , it allows the mother to experience pregnancy and to bond with the baby . From a social point of view it's better because no one else is aware of the fact that your baby was conceived as a result of embryo adoption. This means that the name on the birth certificate is yours, so that there are no long-term issues as regards legal inheritances . Equally importantly, there is no problem with the risk that the baby may have suffered in utero because the mother ( who is going to abandon her baby at birth) did not provide the baby with the right antenatal care. For example she may have smoked should have abused drugs or alcohol because she was an irresponsible mother who didn't want the pregnancy in the first place. After birth , a lot of babies which are handed over for adoption are forced to spend about 3 to 6 months in an institution. Now this can't be very good for them and it does have an adverse impact on their emotional and mental development . The advantage with embryo adoption is that it's possible to bypass all the problems associated with traditional adoption , so that infertile couples can get the baby they want without having to go through the long and convoluted process of traditional adoption.

Times have changed and we need to change with them – and this is all for the best.

So what do I do next Doctor ?

I often see patients who are at a crossroads after having failed 3 IVF cycles . They are confused as to what to do next. Should I try another cycle ? should I use donor eggs ? should I use a surrogate ? should I change my doctor ? should I do a blastocyst transfer ? They have lots of questions - and they often not sure what the best option is !

By the time they have failed 3 IVF cycles , they’re pretty well read and well informed - but often more confused , because there are so many different doctors and different websites giving diametrically opposite information, so it’s very hard to make sense of it.

Do you trust the anecdotal story of your online bulletin board friend who conceived after taking intravenous immunoglobulin or do you trust your doctor who tells you intravenous immunoglobulins are expensive hocus-pocus and just a waste of money. How is a poor patient to decide?

While I cannot give a straightforward simple dried cut and dried formula for how to make the right decisions , there is a simple process which needs to be followed to make sure that you make the decision which is right for yourself. Do remember that there are no right answers which apply to everyone - there are only answers which are right for you - and you need to find these for yourself.

Step number one is to think logically . Use left ( intellectual) part of your brain , to make a matrix of all your options – the cost ; pros and cons , and so forth . Step number two is to use your right brain , so you can decide which among these options appeals the most to you . You need to order these - which is Plan A ? and which is Plan B ? Which would you prefer to do if you had all the money and time in the world ? and which is the last possible thing you’d want to do , but would do if you were forced to do it and didn’t have any other choice .

Finally , the third step is to work out the logistics after you’ve done the first two. The commonest mistake patients make when they're making treatment decision is that they first try to work on the logistics. How much will it cost ? Can I afford it ? Which doctor should I go to ? How many days leave should I take ? Will I be able to fit it in my work schedule ?

This is the wrong way of doing things , and because they start off in the reverse direction , they end up making a mess of the decision. Start with a clean slate - and imaging what you would do if you had no limitations ; all options ; and all possible resources under the sun. Then start thinking about what would I like to do first . That’s where a bit of brainstorming and creativity comes in . You then gradually start restricting yourself based on real life constraints, so you can come up with realistic options , which are workable for you . If you use a systematic approach , your ability to come to the decision which works best for you is extremely high , as compared to a haphazard procedure which seems to depend more on what articles you read or which friend you have spoken to last !

The Health 2.0 conference in India

I've just come back from attending the Health 2.0 India Conference held in Delhi. The conference was a lot of fun and I enjoyed myself thoroughly. The format is extremely interesting , because they compress a lot of information in a small amount of time without ever letting it get boring . For example , the demonstrations are just four minutes ; and the panels last for about 1 hour, so attention does not flag.

The themes are intriguing ; and I was very impressed with the ability of the Health 2.0 conference organisers to get such a diverse group of people with such different interests all together on one platform . These are people who come from various different backgrounds - designers; software geeks - and even some doctors ! ( The pharmaceutical companies were notable by their absence - it seems that they do not think they are in the business of providing healthcare ! )

They all share one passion - How can we use our skills to be able to provide better health care - whether the healthcare is for someone who is a multimillionaire living in Bombay ; or someone who works in a small village in Rajasthan. The common denominator seems to be the clever use of technology and it was quite interesting to listen to these presentations . I enjoyed the chance to meet people from all across the world, all of whom work in the same area - this bolsters your confidence that this is work which is well worth doing !

The star of the show was Mr Anil Swarup an Indian government bureaucrat who's actually completely revolutionized how health insurance can be delivered . Thanks to his innovative scheme, the Indian government actually provides health insurance for over 90 million poor illiterate people . They need to pay less than 50 rupees to sign up; and do not have to fill up even a single form ! This is something I will blog about more later, but what I really liked about him was his can-do attitude and his positive infectious enthusiasm !

Why doctors should let patients decide for themselves

I recently saw a patient who came to me for a second opinion . She was advised IVF treatment and a workup showed that she had an endometrial polyp which was about five millimeters in size . She'd gone to another doctor , who advised her to get the polyp removed before doing the IVF treatment . This is one of those gray zone areas of medicine where it's always very hard to make a definite decision because different doctors have different opinions as to what needs to be done. Most doctors would take the approach that anything inside the uterine cavity needs to be removed before putting an embryo inside the uterus ; and they would automatically and reflexively suggest an operative hysteroscopy to remove the polyp before doing the IVF cycle. This is standard medical advice and is perfectly reasonable. However, there are other doctors who feel this is unnecessarily aggressive , because there is no proof that a small polyp can affect embryo implantation. This is a vexed issue which is very controversial because there aren’t enough studies to be able to come to a definitive conclusion. This is hardly surprising. Most IVF specialists will see only infertile women , so any time they see someone with a polyp , they will assume that the polyp is the cause for the infertility and will advise removal. However, the fact remains that lots of fertile women will also have endometrial polyps , which neither they nor the doctor will ever find out about , because they have enough sense not to go to a doctor to get this diagnosis !

So what is the doctor to do ? and what about the poor patient ? She gets conflicting advice from different experts, one of whom advises surgery and the other one advices you don’t need to do anything at all about it. This is the kind of situation where information therapy is extremely potent . We need to empower the patient with information so the patient can decide for themselves.

What I usually do is explain both options to the patient along with their pros and cons. While this works well with educated, intelligent patients who are capable of making a decision for themselves , there are lots of patients who don't like this approach. For one , they think I’m wishy -washy ; and for another they conclude that I don't know what to do myself , which is why I'm asking them for their advice ! In reality , I’m not asking them what to do - what I'm helping them to do is to come to a decision which they feel will be right for them.

At the end of the day , outcomes are always uncertain. It's not that removing the polyp will guarantee IVF success ; while keeping the polyp will not mean that the IVF cycle will fail. However, there are some patients who are petrified of surgery and will do anything to avoid it. On the other hand , there are patients who are very sure that they want to maximize their chances of success by removing all possible obstacles and hurdles ( no matter how speculative) which may come in the way of their IVF cycle succeeding.

The trouble is a doctor can’t read a patient's mind which is why we need to ask patients to provide their inputs ; and we need to factor these inputs in when we make a decision. I always tell patients the buck stops with me. After all , I am the professional and since I am the doctor , I guarantee that I will never let them make a wrong decision . On the other hand, when there are choices , I encourage them to apply their own mind and to provide their personal inputs , so that we can jointly make a decision which is right for them.

Why patients need to become experts !

I saw a very interesting patient today. She’d been referred to me by a gynecological oncologist who had made a diagnosis of early endometrial adenocarcinoma and had sent her to me because she wanted to find out what her reproductive options were. This was a young 24-year-old woman with polycystic ovarian disease who had just got married six months ago. She had gone to a doctor for an evaluation because she had heavy menstrual periods and the doctor found she had a uterine polyp , which is why she performed a hysteroscopy . Much to her dismay , when the histopathology report came back , it showed she had complex hyperplasia with atypia with early endometrial adenocarcinoma .

Further evaluation showed this was a localized cancer with no invasion , and she wanted to know whether it was possible for her to conserve her uterus because she wanted to complete her family. Now the standard advice in this situation is to go ahead and do a hysterectomy. This is what most doctors would advise because it is actually much safer for them. For one , it's standard medical advice. After all , when you have cancer , you remove it - who can argue with that ? For another, it actually helps to protect the doctor ! In case the doctor does not advice surgery and then the cancer spreads , the patient may come back and sue the doctor for not advising surgery in the first place. This is why many doctors are quite reluctant to advise nonstandard approaches - because of the fear of being sued.

My approach was simple. I told the patient you are going to have to become an expert on your problem. Not only will you have to learn a lot about endometrial adenocarcinoma and its treatment options , you are going to have to learn about polycystic ovarian disease and fertility and infertility and IVF as well. The trouble is that I'm an IVF specialist and don't know much about endometrial cancer - whereas your gynecological oncologist knows a lot about the endometrial cancer , but may not know much about IVF , which is why you need to inform and educate yourself. Not only do you need to understand the alternatives and options , you also need to provide your own personal preferences and inputs so that you make a decision you’re comfortable with.

The outcome for any treatment is always going to be uncertain , and you don't want to beat up on yourself later on that you made a decision without having all the right inputs. Patients need to make a decision matrix of what their options are and then think through their personal preferences, so they can come to a conclusion which they comfortable with. It’s very helpful to document this in writing , so that patients can systematically walk their way through all the steps . Their doctor also is protected , because he can document that he’s explained the pros and cons ; and the patient has provided informed consent before making a decision which may have outcomes , some of which are likely to be unfavorable to the patient.

Unfortunately, few doctors in India take this approach. Most of them prefer being paternalistic – their approach is that patients come to us with their problems because we are the experts ; and it's our job to provide solutions ! They will often provide just one simple solution with a black-and-white approach and then tell the patient - You can either accept this solution if you want to come to me ; and if not, you can find another doctor and go somewhere else. While this is a straightforward approach and something which works well for some doctors , it is not one which I'm comfortable with myself because it doesn't allow the patient to play any role at all in such a complex decision-making process which will affect the rest of her life !

HELP on the CNN IBN India Positive Show

HELP was featured on the CNN IBN India Positive Show