Staying Strong – Using Your Voice
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, We 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 voices 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?
Humility and respect are paramount. Both patients and providers need to understand that effective communication benefits them both. And everybody needs to acknowledge that there are always at least two possible answers—one that is right, and one that is wrong. That means that both patients and providers must always be open to re-evaluating their conclusions as new information is presented and always be willing to look at the information in front of them from many sides. While we at Talia’s Voice are working to get providers to understand this, patients don’t need to wait for the providers to bring themselves to this point.
The unwritten rules in medicine suggest it is a partnership between the doctor and the patient, but often the nature of the relationship is not discussed, it is simply assumed. Using words like “partnership,” “my own knowledge of myself,” “my voice,” “my expertise, your expertise” matter because they establish directly, instead of indirectly, the ways this relationship will work. If you are seeing a doctor for the first time, it is a perfect opportunity to use these words (and others like them) to establish a good collaborative relationship. If you already are seeing a doctor and the collaborative aspects are missing, it’s ok to take time to bring up the doctor- patient relationship, and to set new parameters for how you’d like it to go.
If you find yourself in a situation where you do not feel you are being heard by a provider (doctor or support staff), that your provider is not listening, you can (and should) request they “slow-down,” or “hold on for a minute.” Depending on the provider and their personality, you may even ask literally for a “time-out” and then request that they address your concerns.
If you are in an urgent situation and you have use of your arms, use your words and your hands to give the visual sign for a “time-out.” The goal is not to alienate your provider, but if you are in a hospital setting and there is an acute need that is not being addressed, it is critical that you be heard (and you no longer have anything to risk in being forceful). It is your right as a patient to be listened to. You may worry that your concerns may be unfounded, but that does not diminish your right and your need to express your concerns and to have your provider include you in discussions and decisions about your care. Remember that although you may be right (and you may be worried that you’re wrong), your care providers may also be wrong; their inattention to what you are saying or experiencing may be a significant oversight.
For example, medication errors happen every day in hospitals. When you are being given a medication that you believe was not ordered for you, it is appropriate to speak up—to question what is happening, to get someone to stop and listen to your concern, to double-check the orders. Other situations may be more nuanced. You might be having more pain in the leg that was just operated on and it just feels “different” to you. Your providers keep reassuring you that post-op pain is normal and there’s medication for that, but in fact you have a clot in your leg that is the reason your symptoms are changing. Providers need to hear your concerns and act on them—even if it turns out that you don’t have a clot.
It can take courage to question authority, especially since you don’t have a crystal ball to tell you what is going on, and the power often resides with the doctor and hospital staff. And for women, this is even more difficult, because culturally we are still taught not to challenge those in charge. If nothing else, we hope this will help you feel supported in knowing it is your right (and it is right) to speak up. Talia is a very real example of what happens when providers won’t listen. She would want you to invoke her memory to inspire yourself to speak up, and she would want you to share her story if that is what it takes to get a provider to listen to you.
We, as Talia’s Voice, are working with providers because we know that listening saves lives. But it is an essential part of our mission to also empower patients to find and use their voices.