Conference on Patient Advocacy - make your voice heard !

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 which is plagued 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; and can  select a treatment option which will work best for you; so you have peace of mind you did your best.

This is a guest post from our expert patient, Manju. You can email Manju at [email protected]

Her blog is at www.myselfishgenes.blogspot.com

Need a patient advocate ? Our 4th Annual Putting Patients First conference  will be held on 16 Nov, Nehru Center, Worli, from 10 am – 1 pm. Darius Khambatta, Advocate General, Maharashtra, will be Chief Guest and KeyNote Speaker; and we will be releasing our book – Patient Advocacy – Giving Voice to Patients, at this time. Star speakers include: Dr Devdutt Patnaik and Dr Hemant Morparia ! The website is http://www.patientpower.in

Please do come – we need to work together to heal a sick healthcare system !