Chapter 8: Please ask for Information Therapy!
Vandana Gupta was diagnosed with Hodgkins lymphoma, but her doctors busy schedule and lack of communication skills resulted in her knowing practically nothing about her ailment, apart from its name. However, she wasnt going to be one of those patients who took things lying down. Insufficient information about her illness led Vandana to start a patient-support group for patients with cancer called V Care, which prescribes patient-friendly Information Therapy. She recounts her experiences.
You have Hodgkins Lymphoma, but we will treat you. A chilling silence engulfed the room, as the doctor delivered those words. All I could comprehend was that I was afflicted with a serious ailment. That was all I knew, and the doctor did not have the time for further explanations, so my husband and I were left with no choice but to scan through information in a medical encyclopedia (Google did not exist 18 years ago!). Reading about Hodgkins provided us with greater insight, and we were shocked to realize that it was a type of cancer. The next day, we met the doctor in a crowded room at a leading hospital in Mumbai. In barely five minutes, I was shooed out of the room with a prescription in my hand and instructions to go to the day care center to start chemotherapy.
In one day, I had to learn so many new words . Hodgkins lymphoma, day care, and chemotherapy . without understanding the meaning of these terms. My husband made the mistake of asking the doctor for some information. We were promptly handed a medical journal article which was published to teach doctors how to handle the side-effects and complications of the medicines used for treating Hodgkins disease. This was the worst possible thing that could have happened. The doctor was trying to be helpful, but after reading the article (laden with statistics and complex technical terms), both of us started wondering why treatment was being prescribed at all, and whether it was even beneficial taking the treatment, since the chemotherapy would cause all the organs to fail anyway!
I sincerely wished that the professional, the doctor whom I trusted, had prescribed some information along with the diagnosis and medicines. I would have been empowered and the starting point of this empowerment would have come from my doctor who was going to help me fight this life-threatening disease for the next six months. However, despite my bitter experience, I have forgiven the doctor. I guess he was complying with our request and trying to arm us with information, but he forgot that the information must to be tailored to the patients needs. Otherwise, the information can actually be detrimental. Sadly, the doctor did not have access to patient educational materials . and may not even have known that they existed!
Two days later, in the dead of the night, I got a phone call from my uncle (he lives in Leeds, hence the midnight call) congratulating me. Puzzled, I asked him the reason, and he said If you had to have cancer, you have the best one. Of course, this was hardly a consolation for me. All I could think was that I had cancer and it was a serious issue. I simply could not fathom anything good about my illness. The one good thing however that emerged as a result of this lack of information was the birth of the V Care foundation. I started this after completing my treatment, and my goal was simple . to provide information to patients in terms they could understand. Having suffered the results of an information famine during my treatment, I wanted to do my best to make sure that other cancer patients did not go through the same experience purely because of the absence of doctor-prescribed Information Therapy!
Doctors and patients seem to come from completely different worlds, especially in India. Doctors usually are highly privileged, affluent, upper-class professionals, who think, read, and write in English. Patients, on the other hand, come from all strata of society. Many are illiterate; they can only understand their regional language; they are poor; and have limited ability to read, write, and understand. Given these constraints, it is not sensible for us to blindly adopt the U.S. model for providing Information Therapy . this would never work in India. This is both a challenge and an opportunity. Indian doctors and patients are smart and by working together, they can devise clever inexpensive solutions that are tailored for India. The Information Therapy movement must ensure that information is universally available and tested on real patients, so we know that it does effectively serve their needs. Different patients have different learning styles . some people process written material easily, while others need visual information or interactive communication. Multiple approaches will help in ensuring that Information Therapy reaches out to everyone.
The diagnosis of cancer . a life threatening disease . sends patients (and their family members) into a state of shock. Such patients must be made familiar with hospital procedures . for example, the implications of being registered in a particular type of category (free, general, private, etc). The patient should be informed of the various tests that would be required, and a general time frame in which they need to be done. Every centre should have patient-support groups, and information about these groups should be routinely shared with patients. Medical treatment can be very expensive, and ideas about the cost (and sources of financial assistance), blood requirements, long stay facilities, available treatment options such as chemotherapy, radiation, and surgery, and the role they play in treatment, must be provided in a non-threatening environment. It may not be the doctors job to do all this . and in fact, it is not sensible use of the doctors time to even ask him to do so. But it is the doctors job to ensure that the patient has easy access to all this key information. With this kind of guidance, the patient and his caregivers are prepared for what to expect, and their involvement with the treatment starts from the first day. It also builds a good reputation for the hospital, since it shows that the hospital really cares about its patients. Even today, there are patients who come from villages, expecting to return home in a few days, not being aware that treatment for cancer could go on for a couple of months or more.
Patients equipped with information are in a more confident frame of mind to meet their doctors. Doctors too are happier interacting with knowledgeable patients . it makes their life much easier if they do not have to spend precious time explaining the basics to each patient. Once the diagnosis is known, then the patient would like more information before the treatment commences. The biology of the patients cancer can be explained, along with the available treatment options. Patients must be told what to expect, possible side-effects, success rate of every treatment, survival statistics and prognosis, and the future course of action if things do not go as planned. The practice of providing information proactively to patients will help them to contribute to their personal healing.
Engaging the patient is powerful medicine! Doctors sometimes forget that a consultation is very stressful for a patient, and fifty to eighty percent of everything that a patient hears in a doctors clinic is forgotten (or distorted) by the time he or she gets home. This is why ongoing Information Therapy sessions will help patients immensely. It is not necessary for doctors to do this personally. They can train volunteers and clinical assistants to provide this information. This reassures patients because they now know that they are in the hands of a genuine, caring person. Well-off patients have easy access to the internet, but often they complain that the information they receive from their doctor is markedly different from the information on the net, and they do not know whom to trust or how to make sense of this conflicting information.
The end of the treatment often marks the end of the frequent doctor-patient meetings, and while doctors get busy taking care of new patients, their former ones are often left high and dry! The treatment is now over, but what next? Can they celebrate? Is this really the light at the end of the tunnel they were looking forward to, or is it the start of another uncertain journey? More sessions of Information Therapy at this time would be of great benefit to patients. How they can take care of themselves at home, and what follow up is required must be explained to patients to avoid making them feel neglected and uncared for. They must be assured that their doctors are just a phone call away, should there be any doubts or concerns. Such queries are common among cancer survivors, especially in the first year. Is that fever just a viral infection? Or is it a more ominous sign? A patients mind plays lots of games, and Information Therapy can help to settle problems which may be minor to a doctor, but are a source of major stress to the patient!
There is a huge gap in what a doctor knows and what the patient understands. The ideal situation would be to actively engage patients so that they are completely aware of all the intricacies of treatment. Information Therapy is a great tool which enables the doctor to achieve greater patient participation. This is true, even for illiterate patients, provided the tools are designed thoughtfully. As a patient advocate, I would like every patient to be provided a recording of the conversation and an after-visit summary routinely. For patients, visiting a doctor or hospital is not just a clinical encounter . it is a visit to a trustworthy and knowledgeable professional who has the power to find the right treatment and assist them on the road to recovery.
Doctors, apart from being entrusted with the obvious responsibility of ensuring that their patients get better, also need to be able to comfort their patients and put their doubts to rest. All patients are deserving of respect . and the best way to empower patients is with Information Therapy. Who is better positioned to provide this to them than their team of health professionals, in whose hands they place their lives?