Friday, August 13, 2010

The Expert Patient

When patients have a medical problem, they come to doctors asking for help . They expect the doctor to provide solutions ; and the traditional model is that the doctor reviews the problems and offers the right treatment. The patient complies with this and gets better, so that everyone is happy.

In real life, things are far more complex.

What happens when the doctor and patient do not see eye to eye ? What if the patient is not happy with the solution which the doctor offers ? Usually, patients are scared of doctors and are reluctant to express their disagreement openly. Most will nod their heads, pretend to agree - and then walk out and find another doctor ( if they can afford to do so) who provides an alternative solution they are happier with. However, this is not a happy solution, either for doctor or for patient !

This is actually even more complex in areas like infertility treatment, which is elective and is done primarily to fulfill a patient's personal wish to complete their family.

So what's my approach when I do not agree with my patient ?

I try to follow a model of non-directive counselling. I believe my role is to help the patient to make a decision which is right her her. I do not walk in my patient's shoes, and cannot possibly know what her pain points are ! Often patients will make decisions I may not agree with personally. Nevertheless, I am happy to support them , because my role is to facilitate them to finding their personal happiness.

However , I am also a professional, and the buck stops with me. I promise my patients that I will not let them make a wrong decision which can harm them.

Let's look a patient I saw recently. This was a 45 year old woman who had reached the oopause. She had a high FSH level ( 15.6 mIU/ml on Day 3) and a low AMH ( 0.2 ng/ml) level. Her chances of conceiving with her own eggs were bleak, and I told her that her best option would be to consider using donor eggs. However, she was strongly against this, and wanted me to do IVF with her own eggs. I did my best to explain to her that the chances of success even with IVF were very poor, but she had already made up her mind.

"Look, doc. I cannot do the IVF in my own bedroom. Will you please do this for me ? I understand my chances are poor, but this is what I want !"

I agreed, and did the IVF for her. Her ovarian response was very poor, as expected, and she only grew one follicle. Doing a single egg IVF is very stressful for us, because the chances of failure are so high. I did my best to advise her to cancel the cycle, but she was adamant. " Doctor, one egg is better than zero. Please go ahead and do your best - and we'll leave the rest upto God !"

How could I refuse ? She was a very well-informed successful banker, and knew her own mind. We went ahead; got a mature egg. This fertilised and formed a beautiful 4-cell embryo which we transferred on Day 2. I was pleasantly surprised, but told her not to expect too much, because the chances of success were still very poor. 14 days later, she called up, saying - " Doctor, my beta HCG is 200 - I am pregnant !" She now has a gorgeous 1 year-old daughter, who is the apple of her eye. Whenever she comes and meets me, she always teases me, saying - "Aren't you glad I did not listen to you doctor ?"

This patient taught me to change my approach and I no longer tell patients what to
do . I help them to make a list of all their options, so they can choose what is right for them. I tell them to understand the limits of medical technology and encourage them to be well-informed and to do their homework. I suggest a 3-step approach - Use your brains, so you can make a list of all possible options; then listen to your heart, so you can select the one which seems right for you; and then work out the logistics, keeping a Plan B ready !

I no longer get upset when the patient does not agree with my viewpoint after listening to what I have to say. I try to treat her as an intelligent adult, who is capable of making her own decisions. Patients come to me carrying considerable emotional baggage; and many have a worldview which is very different from mine. I am willing to accept these differences, and we respectfully agree to disagree.

If the chances are very poor, and yet the patient insists that I treat her, am I being unethical by pandering to her desires ? Am I encouraging her to waste money by undertaking futile treatment ?

Who is to judge whether or not the treatment is futile ? Even if it does not result in a baby, but gives her emotional closure and peace of mind , should it not be considered to be a success by her personal yardstick ? She is spending her own money - and by acceding to her request, I am being ethical, because I am respecting her autonomy.

I try to act as a sounding board - and sometimes deliberately play devil's advocate, so patients have a better idea of the pros and cons involved in their decision. If they then decide to go ahead, I do my best to maximise their chances of success.

As a result of this approach, I find we have happy patients, who have peace of mind they did their best. This approach also makes for a happy doctor , because I learn a lot from such patients !

These patients are typically very well-informed and well organised. They are making unconventional decisions, which means they are capable of thinking "out-of-the-box".
They have done their homework, and know their own mind. They are not asking me for help with making a decision - they are just asking me for technical assistance, so I can carry out their desires.

I realise I am not God - and neither am I a fortune-teller. I have seen many patients who have got pregnant against all odds, so I am quite contented when they disagree with me. I understand patients need to make up their own mind, so they can move on with their lives.

This approach well with mature patients who understand what I am doing and want to be treated as adults. It's not for everyone - especially those patients who expect their doctor to passively fall in line with their commands; or those who are incapable to making their own decisions, and expect the doctor to do everything for them

These patients are what I call the Expert Patient - and I learn a lot from them daily !
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