By DAVID ROY
My sister Hilary and I are connected by blood, quite literally. At 12 years old, she was diagnosed with leukemia and subsequently underwent a bone marrow transplant. I was my sister’s bone marrow donor, which left her with my XY blood and DNA coursing through her veins, a source of amusement to the inner science nerd inside both of us. My sister’s sheer willpower her overcome the cancer and brutal therapies that later allowed her to mother three children and run in as many marathons. Despite her diagnosis and poor prognosis, it was something far more innocuous that came closest to killing her — a blood transfusion.
In the first few days following a bone marrow transplant, the new marrow isn’t very efficient at producing enough blood cells to survive. As a result, a series of blood transfusions are required. For my sister, this meant that all transfusions should be type O blood — my blood type — instead of her original type A blood. One day, the wrong blood type was hung on my sister’s IV pole, ready to be transfused. My mother, who had started obsessively checking labels on all medications, objected and this potentially deadly error was fixed immediately. Regardless, this experience yielded an important lesson in navigating the healthcare system.
The medical team is composed of many individuals, though the one most often forgotten is the patient themselves. Unlike medicine’s hierarchical and paternalistic past, today’s system relies on input from many sources to function efficiently and smoothly. Perhaps most fundamental is the interaction between doctor and patient. In fact, due to an emphasis on shared decision-making, patients not only exercise more autonomy than ever before, the system relies on it. Like the example above, patients and their families who are involved, engaged and active in their medical care experience improved results. Knowing exactly how to do this is not without some trial and error, though the following areas may represent some of the best ways to improve the overall experience.
Communication is key
In a recent published study, 72 percent of correct medical diagnoses were made from the case history alone, as opposed to 18 percent for physical exam and 10 percent for laboratory tests. As such, the initial dialogue one has with a doctor is arguably most important. For example, in emergency medicine, one of the most critical things to convey is what brought you in today, or what feels different than other chronic or recurring symptoms. Being open and honest is vital. Although it is the doctor’s responsibility to elicit critical information and establish a diagnosis, it is equally important for the patient to feel comfortable enough to describe even the most embarrassing of concerns. Many problems have painless and easy solutions that patients are unaware of, so be vocal and speak up!
Be your own historian
Since visit times are becoming progressively shorter, patients can accomplish more in a single appointment if several things are already recorded and written down. These include current medications (i.e. name, dose, frequency), past surgeries and major illnesses of immediate family members (i.e. diabetes, cancer, etc.). In addition, young adults are frequently relocating due to education and/or jobs. As a result, adequate continuity of care is a common concern. Therefore, it is very helpful to have the names and contact information of current and former doctors at your disposal. This way, prior medical information may be obtained quickly when switching health care providers. Even better, ask your doctor for test results so that you may have them on hand.
Do your homework
Due to the rapidly increasing body of medical knowledge, providers are simply unable to possess the encyclopedic knowledge required to treat every possible malady. Although doctors are quite skilled at obtaining the information they require, patients can expedite the process by arriving prepared and focused on their specific goals. For example, choosing the right birth control is a daunting process for both doctor and patient — there are over 12 different types and even more formulations of pills alone. In this case, even knowing one’s general preferences (hormone vs. not, length/frequency of desired periods, etc.) can help a patient achieve the most desired outcome. Also, it is suitable to request more information from the doctor and go home to do additional research. You must feel comfortable with any decisions that are made.
Interestingly, more patients are looking for answers outside of the traditional medical system. From genetic testing through 23andMe™ to self-directed research via available open access resources, medical knowledge is increasingly obtainable outside of a doctor’s office. Whether these new means hold real value should also prove intriguing.
Don’t give up, be persistent
Sometimes a visit to the doctor’s office will feel less than satisfying. Maybe there was no definitive diagnosis, the treatment plan was confusing, or you didn’t feel every concern was addressed. It is okay to express these concerns with your provider. Usually, this will lead to a more thorough conversation or even additional tests that can serve to assuage lingering fears. However, if you find that frustration and worry remains after seeing the doctor, go seek out another. Second opinions (or more) are a patient’s right and most health care professionals are happy to offer a referral to another doctor, if necessary. There’s simply too much at stake. Taking charge and being assertive will help you.
Although most of the Cornell population is relatively young and healthy, almost all will intersect with the healthcare system eventually. Furthermore, for the new students, this may be the first time they do so without a guardian present. Since the process can be unfamiliar and daunting, it may be easy to be a more passive member and defer most decision-making to the medical professionals. This is not ideal. Communicate, take notes, be prepared and continue to ask questions and seek clarification. Work with your medical team and the system works much better for you. Good luck this semester, and stay healthy!
David Roy is a seventh-year MD-PhD student at Weill Cornell/Sloan-Kettering/Rockefeller University. He may be reached at [email protected] What’s Up, Doc? appears alternate Fridays this semester.