In order to get the best treatment for yourself, you must change from being a passive participant to becoming an active advocate for your own health
A Most patients in India put their doctors on a high pedestal, thus opening themselves to abuse in case they happen to fall into the hands of incompetent or unscrupulous doctors. The only way to prevent this from happening is to either assume full responsibility for your own care, or assign it to someone whom you completely trust, such as a patient-advocate. That said, there’s a lot you can do for yourself and you don’t need to outsource advocacy to someone else every time you see your doctor. You just need to master a set of skills, so that you are empowered to act as your personal patient advocate. For starters, here are some resources that you might find useful:
Hundreds of Life-Saving Facts, Action Steps and Strategies You Need to Know by Dr. Julia A. Hallisy offers sensible advice on how to lower your risk of being the victim of a medical mistake, get a second opinion, and safeguard against hospital-borne infections.
Health Power 101: The Complete Guide to Patient Empowerment by Jeffrey Brown will teach you about common health problems, medical tests, and the importance of the early detection of chronic diseases.
- If patients are not involved in their own healthcare, they are increasing their risk of :
- being harmed by potentially life threatening oversights by the medical staff;
- being overcharged by billing staff;
- being short changed and underpaid by insurance companies; and
- wasting money on duplicate tests?
Every Patient’s Advocate: (www. trishatorrey. com) provides information on how to receive better care
The Empowered Patient: (www. theempoweredpatient.com) gives tips on how to effectively communicate with medical staff-members.
Let’s take the case of Prashant S Dhananka, the Infosys employee who spiritedly argued his case from a wheelchair after his botched up chest surgery 19 years ago that left him paralysed from the waist down. The compensation awarded to him by the Supreme Court was less than the Rs 7 crore he sought, but the highest paid in India to date - Rs 1 crore. During his trial the software engineer gave vivid details of the gross negligence he suffered at Nizam’s Institute of Medical Sciences (NIMS), Hyderabad. You may like to go through the details of this case (www. indiankanoon.org/doc/57638/) in order to understand how and why sometimes things can go so grossly wrong between a patient and a doctor.
Should I Become an Expert Patient or Hire an Expert Patient Advocate?
Dave deBronkart’s story makes for interesting reading. He was diagnosed with kidney cancer and was given less than six months to live. “I found myself tumbling down a rabbit hole toward my death,” he told National Post. Later deBronkart’s doctor referred him to a patient forum on the Internet, where members told him about a new treatment — high-dosage interleukin — that many hospitals do not provide, but that in a minority of cases can treat his type of malignancy.
He hunted down a specialist who treated him with this, and the treatment worked wonders. Mr. deBronkart realised that the established system of propagating research — in which studies are submitted to a journal, reviewed by peers and finally published in a process that can take a year or more — could not keep up with a deluge of scientific developments in medicine. “What I found from the patient community was better, more up to date and medically more sophisticated than the information that most oncologists have,” Mr. deBronkart said.
The ABC of doctor-patient talk
The first skill you need to learn is how to talk to your doctor, so that he listens to what you have to say. Experts recommend the ‘ABC’ model for patients if you need to be your own advocate, where:
A stands for Asking the right questions of the doctors who are treating you;
B is for Being prepared, so you are armed with knowledge about the disease afflicting you; and
C is voicing your Concerns to the doctor, so he can address them.
In order to save your time, and your doctor’s, the Patient Advocate Foundation (PAF) in the US encourages patients to go to a doctor with a prepared list of questions such as:
- What is the goal of my treatment?
- What are my treatment options?
- What is your experience with the treatment of this disease?
- How will I receive this treatment?
- What will it cost me?
At times, if the doctor, for whatever reasons, is not very forthcoming with the information that you seek, it helps to be a little assertive. It’s important to trust your doctor - but you need to verify his information is reliable. You can validate it by checking with other medical experts, and seeking out patient support groups and expert patients.
Share your health history. It’s important to be honest with your doctor. Inform her about all the treatment protocols that you are following, including alternative treatment plans. Have you checked out www.healthvault.com? Open a secure personal account on the site to organise your medical records, imaging films, test results, doctor’s appointments, and even your children’s immunisation records. You can save and store your medical history, your past and current medications, allergies, family history, and daily blood pressure and blood sugar readings.
If You Don’t Tell The Doctor That You Are In Pain, Who Will?
- Never act brave.
- Never try to minimize the pain or symptoms you are experiencing.
- Don’t for get to report the bad parts of your day or the inconvenience your illness is causing you.
When in doubt, seek a second (or third) opinion. Also, don’t hesitate to negotiate your final medical bill. If you are financially strapped, many doctors offer a discount on their consultation fee.
In everything that you do, remember that you do not need to be aggressive. There is a world of a difference between being assertive and being aggressive. While the first approach will get you quick results, the second will only serve to antagonise your doctor.
You will find valuable information on improving doctor-patient communication from my blog entries listed below:
Dr.Malpani’s Blog: How to talk so your doctor will listen (blog.drmalpani.com/2012/09/how-to-talk- so-your-doctor-will-listen.html)
Where I talk about cultivating a source inside the doctor’s clinic, seeking other references, and the importance of taking a friend along to your appointment with the doctor.
Dr.Malpani’s Blog: How to talk so your doctor honest (blog.drmalpani.com/2012/11/how-to-keep- your-doctor-honest.html)
Ask for video documentation of any surgical intervention and if your doctor is reluctant to share this information, this is a red flag which should cause concern.
Dr.Malpani’s Blog: Why patients need to SPEAK UP! (blog.drmalpani.com/2012/08/why-patients- need-to-speak-up.html)
The more the questions you ask about your treatment, the more careful your doctor will be about how he treats you. Talking builds trust and leads to better results, quality, safety, and satisfaction.
Dr.Malpani’s Blog: How to talk to your doctor SAFELY (blog.drmalpani.com/2005/10/how-to-talk-to- your-doctor-safely.html):
SAFE is an easy to remember acronym, which will help you communicate your fears and expectations to your doctor, so he can address them. Here S stands for your story, A for assessments, F for fears and E for expectations.