Dr.Malpani's Blog: The one conference you should not miss !

Dr.Malpani's Blog: The one conference you should not miss !

Patient Advocacy in India - giving voice to the patient

Do you know which is the scariest place in this world ? Any guesses ? 

One of the scariest place on this planet is a hospital ! This is true when you yourself become a patient – and is even more valid when your loved one is lying there , struggling to get well. Being ill robs you of your ability to judge rationally and take appropriate decisions. A hospital environment is a different world in itself - you enter into it believing , hoping and praying that your health problem will be solved and all will be well. You assume that doctors are angels working hard to protect you and save your lives and that they know everything which is needed to safe guard you. 

But once you find yourself lying in a hospital bed , you realize that being in a hospital is like being trapped in a world where you do not know the language, the inhabitants , and the culture ! You start to panic. Your doctor might speak in a language which you cannot understand ( because he uses medical jargon), and subject you to many tests and therapies (sometimes very painful ones) . When you are not sure what is being done and why, you start wondering whether the tests are really necessary or if it is just a way of taking away your hard earned money.  Most doctors start treating you like a broken object which needs to be repaired and forget that you are a human being with emotions. This happens because they are too busy to talk to you and clear your doubts and fears, while some are burnt out , and don't really care for your emotional well-being. As a result you might end up becoming emotionally exhausted and your mental well-being will be at stake every passing day. 

You do not know whom to ask for help to clear your doubts and concerns and how to get the best out of the many splendid resources that are available in the hospital. This is very true in case of couples who undergo IVF treatment too. You go to the clinic with the innocent expectation that you will come back with a baby . You soon end up frustrated because:

you don't understand what your doctor is telling you;
why you are being charged so much and for what procedures;
why you are being subjected to numerous tests ;
what your doctor is looking for; and
why your embryos refuse to implant even if they look super good .

Sometimes you start wondering if you are receiving the best treatment possible or if you are just being taken for a ride ! Difficult situation, isn't it ? 

The bitter truth is medicine has become a big business. Many doctors are more worried about their bank balance than their patients’ well-being. Many corporate hospitals operate with their profit in mind , rather than their patient's safety and comfort. In such a situation how will you feel when you find a saviour :

who is knowledgeable enough to communicate with your doctor and at the same time explain to you in simple terms what your doctor is thinking ;
who can protect your rights as a patient;
who can question your doctor about why he is ordering particular tests and therapies and their validity ;
who can understand what you are going through emotionally , and is empathetic enough to infuse you with realistic hopes;
who can help you make sense of hospital bills and question the hospital administration if there is any discrepancy ;

who can help you fill medical forms for claiming reimbursement from health insurance policy;
who can keep a constant vigil on your treatment so that you are safe - guarded from potential unintentional medical errors which may even endanger your life;
who can help you access all the available resources in the hospital in times of crisis –

in short, a person who is your teacher, friend, philosopher, guide and savior during your difficult times in the hospital !

Are you wondering whether such a person exists ? Yes they do, and in the field of medicine they are called patient advocates. A patient advocate is a person who is your confidant, who speaks for you, who works in your best interests, who helps you to navigate through the complex health care system and educates you about your medical problem when your health is in jeopardy. 

In the past, when the field of medicine wasn’t this complex , it was easier for a knowledgeable family member to take up the role of being a patient advocate. But today , when so many new discoveries are being made in the field of medicine, there are a mind-boggling number of different treatment options available to treat a particular condition. Even doctors are perplexed by medical complexity and not every doctor keeps himself updated about the advances in their particular field. This is why deciding which treatment option is best for you is not an easy task. Such a complex situation with multiple variables, combined with a doctor who does his job mechanically (by mindlessly applying the same treatment approach to all his patients , irrespective of their individual needs) can prevent you from getting the best treatment possible. 

However, if you have a patient advocate by your side , who understands you as a person and cares for you; who is willing to thoroughly research your medical problem and treatment options; and who is happy to spend the time and energy to teach you, so you can jointly decide what kind of treatment will benefit you the most, you will start to feel confident and well-cared for during your difficult times in hospital !

A patient advocate can be your relative, a friend, a patient who has been through what you are going through now (and hence has gained immense knowledge through experience ) or someone who does it as a profession or even an organization which gives voice to the patients. A good patient advocate must be knowledgeable, must have good communication skills (because he acts as a bridge between you and your health care team), must be patient and empathetic enough;  and who is available for you around the clock. Above all a good patient advocate will be a good teacher as well as a student – someone who is skilled enough to help you understand your health problem , and one who is willing to educate himself and constantly update himself in the field he is working.

Patient advocacy is not a new field as far as western world is concerned. But in India the concept of patient advocacy is still new and growing . I am sure sooner or later patients and hospitals in India will encourage the importance of patient advocacy .

Through this blog , I work as a patient advocate ; and it gives me immense satisfaction that I am doing my best to help people who are in a similar situation as I am. So please do write to me if you need help in understanding your IVF treatment. I will be happy to help educate you (as far as my knowledge allows ) about your condition , so that you have realistic expectations; andcan  select a treatment option which will work best for you; so you have peace of mind you did your best.

Dr.Malpani's Blog: Patient Advocacy in India - giving voice to the patient

Dr.Malpani's Blog: Patient Advocacy in India - giving voice to the patient

On Pain By Khalil Gibran

These wisest words from Khalil Gibran gives me so much solace. I read "The Prophet" by Khalil Gibran and I felt no one has ever expressed such complex emotions in human life so simply yet profoundly, effectively and accurately.

Your pain is the breaking of the shell that encloses
your understanding.

Even as the stone of the fruit must break, that its
heart may stand in the sun, so must you know pain.

And could you keep your heart in wonder at the
daily miracles of your life, your pain would not seem
less wondrous than your joy;

And you would accept the seasons of your heart,
even as you have always accepted the seasons that
pass over your fields.

And you would watch with serenity through the
winters of your grief.

Much of your pain is self-chosen.

It is the bitter potion by which the physician within
you heals your sick self.

Therefore trust the physician, and drink his remedy
in silence and tranquillity:

For his hand, though heavy and hard, is guided by
the tender hand of the Unseen,

And the cup he brings, though it burn your lips, has
been fashioned of the clay which the Potter has 
moistened with His own sacred tears. 

Khalil Gibran

A new beginning or the end ?

Thanks for everyone for all the kind prayers ! I gave birth to two beautiful souls on Nov 5th, a girl and a boy. It is too early for them to survive outside my uterus. Many things happened in these 10 days, all suddenly without any warning. We went through terrible torture which no parents should go through. I have no energy to elaborate on anything and even if I do, it can be very uncomfortable and heart-breaking for many of you. The reason they have to come so early is incompetent cervix, preterm premature rupture of membrane and preterm labour. How we are coping with what happened ? We don't really know yet. We are surviving ofcourse. Our children looked so beautiful, we are able to hold them in our hands, kiss them to our heart's content. I would have named them Anisha and Aniruddha. The pain of dreams shattered is unbearable. When I saw my DH cry I really wished I were dead. Can someone tell me why these things happened to us ? This the question which haunts us. Once my friend was telling, we haven't harmed anyone and nothing bad will happen. Does it mean we have harmed someone and is it our bad karma that is making us go through all these ? Does it mean only bad people suffer ? Why bad things happen to good people ?

Friends, I really wish I could be more strong. I don't want to lose my life, I want to live it fully and happily. I still believe life is very beautiful and sooner or later I will take charge of my life. I want my DH, my parents, his parents to be happy. I will do whatever I can do to bring back the happiness. Do I despise God ? No, surprisingly I feel much closer to that positive force, perhaps He is the only person I can cling on to during this difficult time. 

Some people when they grieve do not want to think about future. But for me a plan for the future puts my mind at peace. I am thinking about surrogacy. I can't imagine going through all this again, especially when my cervix is so weak. I am thankful to God that He allowed me to enjoy all the joys of pregnancy which I thought I will never be able to go through as a woman - severe morning sickness to labour and the pain of it, how the body amazingly tries to bring the baby to this world. I am a mother now but without my children and I think I have always been a great mother to many in my life.

Please pray for us that we should carry on with our life as usual. I want Manju back. I want that wonderful smile in my DH's face. This experience has made us much closer. Sometimes I feel very guilty that my body has destroyed all his wonderful dreams. I feel I am defective and have destroyed my childrens wonderful life.

Let this suffering make us much stronger and much more humane, let me not become bitter and angry on life !

Last but not the least, do not compare my situation to anyone of yours. Such things happen very rarely and do not equate what happened to me to yourself and panic. Some are destined to go through hard times and perhaps there will never be any answer for why it is so ! Religion call it as karma, people call it as bad luck, science will say it is just a game of probability - whatever it is the pain is huge and I strongly want to believe this too will pass !

I have nothing more to say as of now, hope I will see you all with the same happiness as before, the same Manju will be back but perhaps with a much mature and empathetic outlook of everything. Take care and please share with me all your joys and sorrows as always.