Published: 14/03/2018 Tags: Ehlers-Danlos in the News

Staying Strong – Using Your Voice

By Naomi Kirtner, originally posted at 

This week is National Patient Safety Week, March 11 – 18. Although we lost our daughter, Talia —an EDS zebra—due to reckless and negligent care, I find it difficult to feel cheerful about this kind of national awareness program. On the one hand, perhaps it does work as a reminder to medical providers that keeping patients safe is paramount. On the other hand, if doctors, nurses, and hospital personnel—the people in charge of our care—need to be reminded that keeping their patients safe is important, then things really have gone askew. And, indeed, having had Talia die in the system because her providers forgot to take care of her, refused to listen to her, our cynicism seems justified.

But we also believe we can change the ways that patients and providers communicate. While working to hold providers accountable for the ways they practice medicine, we, as patients, can start changing the doctor-patient relationships now. One place to start is with ourselves. We can name the theme for this year, “Staying Strong Even When Pressured to Give Up Our Voice.”

When patients do not feel heard, we commonly react in one of two ways, neither of them ideal: We may become deferential and stop speaking up. Since we are dependent on providers for care and their medical knowledge, we may just resign ourselves to not being heard, thinking it’s better to just be quiet and say nothing and hope the doctor gets it right. Although it runs contrary to our own experience to defer, the doctors act like they know, have the authority, and seem sure. Another response may be to get loud and demanding because we sense the (real) threat of not having our voice heard. We may get insistent or even demanding, and then risk being categorized as “difficult” patients who providers are wary of and who are not well-liked. If we follow this path we may find that we are being heard even less by providers who want to interact with us as little as possible. Both these avenues leave us feeling resentful about our “care.”

With practice, a middle ground can be achieved, and even though I wish it weren’t up to the patient to make that happen (i.e. it should be the providers’ responsibility), the reality on the ground means the patient is going to have to be the leader in the communication department, unless you are lucky enough to have a wonderful set of providers. The goal is for both patient and provider to feel heard, and together—patient and provider—work out what direction to take. As patients, we know our own experiences and symptoms, but the disease process is complicated and so we rely on medical providers to share their medical knowledge. Providers, on the other hand, know about disease, diagnosis, prognosis, and treatment, but only by understanding the experiences of the patient in front of them will they be able to apply their knowledge and skills to the maximum benefit. As patients and providers collaborate, both parties bring information that enlarges the picture, increasing the likelihood of making the correct diagnosis, and choosing the most appropriate treatment for the patient.

So how do you get there?

Click here to read the complete original article.


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