Bob was smart, friendly and a joy to be around. The former owner of a small family business, he spent hours every day reading. His mind was razor-sharp.
When he was 85, he was admitted to the hospital as a result of a mini-stroke. His heart doctor prescribed a blood thinner. His hospital stay was uneventful and he was soon home, taking the blood thinner as directed. Life went on much as it had before.
One day two or three months later, his wife Joan was driving them home from her 50th college reunion. All of a sudden Bob cried out, "My eyes! My eyes! Something terrible is happening!"
Within minutes, he was blind - totally and permanently blind.
Joan explained, "His retinas exploded with massive bleeding. Within the next five hours, his three doctors - his eye doctor, his general practitioner, and his heart doctor - all said, 'Take him off the blood thinner!'"
The bleeding and blindness were side effects of the drug. The odds that he would suffer these problems were higher than they would have been for many people. Bob had several medical problems, including a chronic eye disease and diabetes, which increased his risk.
Joan said, "When I asked the eye doctor why no one told us about these risks, he said, 'Well. Most people would rather be alive and blind than dead.'" Joan was appalled and furious. She said, "When the patient is 85, don't you think you should give him that choice?"
She recalled, "I was shocked when I found out two facts. First, his three doctors had never talked to each other. Second, the general practitioner and the eye doctor both knew that the cardiologist had prescribed the blood thinner, but they didn't say anything. I often wonder how different our outcome would have been if Bob's eye doctor had spoken up."
She said sadly, "Given an option, Bob would have chosen to die at 85 rather than live to 91 totally blind - reading was his life."
It is worth noting that Bob was almost completely deaf - and had been for many years before his mini-stroke. Hearing aids had stopped helping him years earlier.
Telling Bob's story years later, Joan said, "When he went blind, he was almost entirely cut off from the world. In minutes, he lost the ability to interact with the world of ideas. And that's how he spent the last six years of his life."
Lack of coordination among doctors is common. An article in Kaiser Health News by Jessica Marcy quoted Professor Kate Lorig as saying, "Right now, health care addresses diseases or even parts of diseases or small sub-parts of the body. It does not address the whole, complex person with multiple chronic diseases."
Lorig continued, "You go to a primary care doctor, and then you see four or five specialists, none of whom really talk to each other. It is totally uncoordinated. It's chaotic. It serves pieces of people, not whole people."
Your doctors may not talk with each other. They may not connect the dots. They may focus on the immediate crisis rather than on all aspects of your life. As a result, they may provide treatments that address one problem while making something else worse.
How can you protect yourself?
Four steps may help you avoid problems like Bob's:
- Tell every doctor who treats you about other medical conditions you have. For example, you might say, "I have diabetes, I am 90 percent deaf, and I have macular degeneration."
- Tell every doctor who treats you what you care most about being able to do. For example, you might say, "Reading is my life."
- Ask specifically how the treatments the doctor orders might reduce your ability to do the things you most care about. For example, you might say, "Given that I have diabetes and macular degeneration, what is the risk that this blood thinner will damage my eyesight, making it harder for me to read?"
- Ask questions and provide information as if your life depends on it. It very well may.
If you follow the above four steps, you may help your doctor remember that you aren't simply one organ or body system, but a whole human being with your own priorities and concerns.