Getting Lost (and Found) in the Maze of Health Data

A few weeks ago, amid the hectic rush of dinner, preparing the little ones for bed and helping the older children figure out their evening, I got a phone call that made me wave off everyone, and retreat outside, to the back porch, to give my attention to the caller. I try not to mix my professional life as a health advocate with my private life as a mother of five, but when someone calls you, saying that their friend recommended they speak with you, and in the same breath, telling you their father has stage IV liver cancer, well, I try to stop what I’m doing and focus on the person on the other end of the line.

The man was confused. He was obviously intelligent, well educated, thoughtful, and a loving son who just wanted to help his father. But he was confused because he, honestly, didn’t know what to do. The doctors, between bedside visits and hurried conversations at the nurses’ station, were telling him that the treatment wasn’t working and they were stopping the new drug. His late night online searching had revealed a possible experimental drug, being tested in Germany, and the wee hours of the morning had revealed the healing powers of crushed aloe leaves made by a monk in Peru (honestly). Whom did he follow? Whom did he believe? Was it even his choice to decide? Is to not choose the impossible, or the improbable, a mistake? Or worse?

I have these conversations often, although not always with such high stakes; all of us, whether faced with experimental treatment for end stage cancer, or more simply, to use/or not use steroids to treat a child’s allergy, or to have exploratory laparoscopic surgery for possible endometriosis instead of continuing to take medication, all of us are faced with challenging medical decisions at certain points in our lives.

It used to be that the doctor would tell us, “Here, Ms. Cohen, you are taking this pill for the next 10 days” and you asked no questions. My brother, who’s spent many years in Japan, told me that not long ago when he was there, he received a little packet of folded paper from his doctor with three little yellow pills inside. No name, no instructions other than, “take this.” The expectation being, that, of course, the doctor tells you, you follow.

Today, however, it seems that we have swung to the other side of the pendulum in Western medicine. Not only does the doctor not tell you what to do, but she may give you a long list of possible diagnoses and treatments and they say, “now, you decide.” I have many people call me, stating, almost in a panic, “but I’m not a doctor! How do I know?” Or I have those who have consulted with Dr. Google and are now convinced that their ingrown toenail is actually gangrene. Neither one of those options leave us feeling empowered to make a thoughtful, informed decision, but rather, just more helpless.

I spent 20 minutes with my dinner time caller, reviewing the information that the doctor had provided, but in more basic language that spelled out the options (or lack thereof). We then reviewed the information he had on the German experimental drug and the crushed aloe leaves. I often call this the 30,000 foot view, as you would from a plane, looking over the general topography of what’s really available to you, what makes sense to you, and seeing the lay of the land from the sky.

Decision making is challenging and making a medical decision with little information is near impossible. However, I have found that when people feel empowered that they have the capability to make the decision, and they choose a path instead of falling into one, or being pushed onto one, they feel better, clearer and stronger about the decision. That is what is truly crucial. There are almost never objectively ‘right’ answers, there are solutions that are right for the patient and his family at that specific juncture during that time in that situation.

It is less important whether the caller chose an experimental drug, or crushed aloe leaves, or to do nothing other than sit by his father’s bedside and hold his hand. I think what is important is how this son felt at the end of the brief phone call, that he had the ability and wherewithal to make a decision, and that it would be the right one for that time and that place and that family.

* Aviva Yoselis, MPH, director of Health Advize and lead healthcare advocate for the Shira Pransky Project, has more than 20 years of experience in health advocacy and health system navigation.

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