By: Dr. Stephanie Wolf-Rosenblum, Chief Medical Officer, CareNav
It was the call I had been dreading for a long time, maybe even years. Dave had been medically frail for a while, and now nature was catching up to him. So I can’t say I was surprised that he had taken a turn for the worse, but I was surprised to hear that his family was struggling to understand what the doctors and nurses were telling them. They were a family of professionals and had become medically sophisticated over the duration of his long illness, so it never occurred to me that they would have trouble communicating with the health care team. But here they were seeking a “medical translation”.
I would have thought this particular family would have consulted “Dr. Google” before calling for help. Were they just overwhelmed because their loved one was gravely ill? Or were they afraid of getting it wrong? The internet puts a wealth of knowledge at our fingertips, and Google translate is a great resource when it comes to foreign languages. But in either case, just miss a point or the translation by a smidge, and the meaning can change completely.
So I went and sat with them, carefully listening to their questions and taking time that their health care team could not to help them understand what was happening. Together, we crafted some focused questions they could use to get answers that they so keenly sought.
Sadly, my friend passed away shortly thereafter, surrounded by his loved ones. But at least they had the comfort of knowing that they understood the process and that everything that could have been done was.
Many people do have someone in their life that is medically savvy. And those people are used to getting questions of all sorts, at all times of day and in the most unlikely of places. And most of them are gracious about offering what help they can. But they are not always knowledgeable in the areas being discussed, and sometimes the sharing of personal information is very uncomfortable – on both sides. What do you do if you don’t have a nurse or doctor in the family to translate for you?
Much has been written about the relationship between health literacy and quality of health care. By some measures, more than 50% of people have difficulty understanding the written information they are given, and more people than not report struggling to reliably complete their own medical forms. When it comes to interpreting their medical records, the system often breaks down totally.
To achieve the kinds of quality of health and the health care experience that patients and caregivers strive for, much attention will needed be needed to bridge this gap. Patients, families, and caregivers deserve the kind of time and attention to be heard and to ensure they understand and are full partners in their healthcare processes. The patient learning curve is steep, and patients and families deserve more support than the current system allows. To have a comprehensive, preventative and proactive healthcare plan, we must look beyond the doctor’s office and empower patients to take an active role in their care.