Recently, I was challenged by the mother of a trauma patient. She had read about traumatic spleen injuries online and was concerned about the risk a hematoma presented and wanted the ultrasound to look at the hematoma. I found myself floundering around trying to explain how this study was unnecessary. In frustration, I turned to my nurse practitioner and said, “Heather, can you translate for me?”
This is a common problem. The failure to make legitimate health care information understandable or accessible to patients paradoxically lends credibility to the Google disinformation that is out there.
There is no population for which clear, understandable communication is more critical than for infants suffering from complications of premature birth. Parents feel overwhelmed as expectations are crushed. There will never be the reassurance that their child lived a full life with no regrets. As a result, decision-making becomes all about the battle in front to them and not about the long-term view.
Some infants acquire terrible, permanent injuries to the brain as a result of simply being born too soon. This leads to a whole host of chronic, complex medical problems including mental retardation, autism, cerebral palsy, gastroesophageal reflux disease, aspiration pneumonia, epilepsy, dysphagia, intestinal dysmotility, and spastic quadriplegia.
Now read that list again and imagine saying those words to an emotionally exhausted, 25-year-old mother with no medical background, holding vigil next to an incubator with her 24 week-old premature 800-gram daughter. Do you think she is going to understand any of the medical English words on that list?
Moreover, imagine her trying to project what her life burden will be in taking care of her daughter over the ensuing decades. How can she possibly make an informed decision when she doesn’t understand any of that information?
Recently, I bore witness to such a situation where the surgeon truly informed a family about what they were in for. The patient was a 750g premature infant in which an invasive infection had destroyed part of the intestine. The baby had also bled into her brain resulting in significant brain damage, the severity of which was unclear. An emergency surgery was performed to remove the dead intestine. After that, the child bled again into her brain. Her neurological exam, a physical exam that determines the degree of injury to his brain, was significantly worse than before surgery. The following day the family met with the care team. A pediatric neurologist remarked that there was a, “Less than 30 percent chance of a meaningful recovery.” Then the surgeon spoke up.
I am not a neurologist; I do not know what a “less than 30 percent chance of a meaningful recovery” means. What I can tell you is that I take care of a lot of kids like your daughter later on in life and from that experience let me project what I think your life is going to look like. Your daughter will never walk. She will never talk. If you are lucky, she will smile at you. She will never eat by mouth. She will have a tube surgically placed in her stomach to feed her and give her medications. She will require a lot of medications because she will have seizures, she will vomit multiple times a day, and you will be cleaning up bed sheets and clothes covered in vomit. She will always wear diapers. Her spine will be bent and need to be surgically corrected. Her muscles and tendons will become so tight it will require surgeries to cut them free. If you are fortunate, you may be able to get her into a special school several hours a day so that you can get some relief. You will have to reconfigure your entire household and life to take care of her. Your other children, if you have them, will be ignored. And in spite of taking care of her together, you two will become strangers to each other because this will be the only thing you do. Then around the age of 18 her bowel, which will not work that well, will twist and die. While this is occurring, she will have excruciating pain that she cannot tell you about because she cannot talk. Then I will take her to the operating room and find there is nothing to be done as nearly all of her intestine will be dead. We will admit her to the intensive care unit, and she will die there several days later.
The family sat there stunned. It was the first time someone had spoken to them in concrete and meaningful terms that they understood. Several hours later they made a decision to make their daughter comfortable and to hold her for the first and last time. It was a heartbreaking, but peaceful moment. They had clearly grasped what they were in for if they had asked us to “fight the battle “ to try and save her.
When most physicians initiate end of life discussions for these kinds of patients, it is much later in life. Typically something catastrophic has occurred. By this point the families are medically sophisticated and start asking root cause questions like, “Why hasn’t the bowel worked well for the last ten years? What percentage of these kids does this happen to? Well if this happens to all of them, why didn’t someone tell us this when she was born?“ There is always some sense of shock and betrayal followed by a resigned comment of “If someone had just explained this to us early on, we would have made different decisions.”
Informing patients and families isn’t just about giving them objective, legitimate information, it is about making it accessible in a language that they can understand. Otherwise, we fail in our mission as caregivers and leave them to be seduced by the disinformation that is out there.
Peter F. Nichol is chief medical officer, Medaware Systems.
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