Communicating With Your Physician: Tips On Self-Advocacy | Turner Syndrome Foundation

Communicating With Your Physician: Tips On Self-Advocacy

In this post, we will discuss some tips on how to communicate with your physician. Particularly, we will focus on specific ways patients and caregivers can ensure that physicians are listening to and hearing their stories for effective clinical encounters.

Note: The information in this post is educational and should not replace medical advice from your physician(s). Always consult with a medical professional regarding any health concerns.

Living with Turner syndrome (TS) inevitably requires many visits to doctors, check-ups, lab examinations, and so on. This much is assumed. Another important component to consider is to what extent physicians are hearing their patients. Are they leaving space for patients to tell their stories? Were all the patient’s questions addressed? Do patients feel heard after leaving their physician’s office? If not, what can patients and caregivers do to advocate for themselves? Pediatric-trained physician and medical humanities educator, Sayantani DasGupta, writes, “clinicians cannot, of course, ever exactly know how any illness story begins or ends.” For this reason, patients should feel empowered to own their clinical encounters to ensure they are being fully heard, seen, and witnessed. Below, we share several tips to equip patients and caregivers with the tools and information to effectively communicate with their healthcare providers.

“If you and your doctor are aiming for a diagnosis from the start, the attention is focused on you and your story, not just on your symptoms. Instead of forcing you onto a cookie-cutter pathway, your doctor will need to consider each part of your story with you to come up with an answer.”

Leana Wen, M.D., M.Sc., FAAEM

Don’t Shy Away from Telling Your Story

When doctors see patients, one of the things they aim to identify is the “chief complaint.” The chief complaint is used to directionally guide the diagnosis of the patient. It helps the physician understand what brought you to see them. Several examples of chief complaints include back pain, chest pain, headache, and nausea. The problem with the importance placed on identifying the chief complaint is the potential for allowing the chief complaint to supersede your story. When meeting with your physician, ask your doctor what they determined to be your chief complaint. Then, advocate for all your symptoms and correct the physician if they wrongly identified the most important symptom(s) you are experiencing.

Throughout your visit, the doctor may stick to asking yes/no questions. The nature of these questions is limiting. When possible, guide your physician away from close-ended questions and toward open-ended questions. These questions will give you the opportunity to expand on your symptoms. Thus, your physician will gain a greater look into your clinical story. If your physician persists with asking close-ended questions, answer with yes/no but also elaborate as necessary. In their book, When Doctor’s Don’t Listen, Dr. Leana Wen and Dr. Joshua Kosowsky note that telling your story “helps to put your symptoms in the context of your life.” Some sample questions they provide include:

  • What were you doing when the symptoms started?
  • How has it affected your daily life?
  • Has it prevented you from doing anything you usually do?

Involve Yourself in the Diagnostic Process

As your doctor navigates your story, they will be piecing it together to create a diagnosis. Your doctor will also be thinking about your differential diagnosis. Dr. Wen and Dr. Kosowsky define this as “a list of possible diseases to account for the patient’s symptoms and their relative likelihoods.” Ask your physician before they leave the room to share what their differential diagnosis is. In addition, some questions Dr. Wen and Dr. Kosowsky suggest include:

  • Would this differential diagnosis be a common condition for someone like me?
  • Would this be a usual presentation?
  • Is there anything else that this could be, perhaps something less common?

Asking these questions will help build a partnership between you and your physician. Dr. Wen and Dr. Kosowsky urge that you “ask to share in your doctor’s thought process from the beginning. Even before [they] conduct a physical exam, ask [them] what [they think] is going on–what [they have] for as your differential diagnosis.” Therefore, being proactive in your diagnostic process will improve your relationship with your physician and create greater transparency in your care.

Know Whom You Are Speaking To

In larger academic hospitals–and even some smaller community hospitals or doctor’s offices–the person you may be speaking to could be a resident, medical student, or other medical professionals. If you are not sure who you are speaking to, feel free to ask, “Are you a student, resident, or attending?” An attending physician supervises residents, medical students, and other clinical staff. Therefore, they sign off on significant decisions and are responsible for all aspects of a patient’s care.

If you are not comfortable receiving medical advice from a student or resident trainee, you should ask to speak to their attending. They can either reaffirm the advice given or provide different perspectives and options for your care. Dr. Wen and Dr. Kosowsky write, “You are entitled to know who is providing your medical care.” Thus, knowing whom you’re communicating with is important in understanding the care you’re receiving and consistency in your clinical encounters.

Provide Your Physician With Resources

TS is estimated to affect 80,000 patients in the United States. This number classifies TS as a rare disease–or a disease impacting less than 200,000 patients. Unfortunately, this means that there may be physicians you encounter that are not as familiar with TS and its clinical implications. If this is the case, it is the physician’s job to research and understand how they can provide quality care for patients with TS.

However, patients can also be proactive in this effort. In a recent webinar on cardiovascular health in TS, Dr. Siddharth Prakash, M.D., Ph.D. from McGovern Medical School recommends providing your healthcare provider with a TS passport. There are many varieties offered online and include checklists for things to watch at different ages for patients with TS. The Patient Handbook on TS is the most comprehensive book for care planning and record keeping.

For more resources that can be shared with physicians, click here to access guidelines and resources provided by TSF.

“Patients’ stories are not objects that [physicians] can comprehend or master, but rather dynamic entities that [physicians] can approach and engage with, simultaneously remaining open to their ambiguity and contradiction.”

Sayantani DasGupta, M.D., M.P.H.

Written by Reyn Kenyon, TSF volunteer blog post writer and editor.


Sources
  1. DasGupta, S. Narrative Humility. The Lancet 371(9617), 980-981 (2008). [Article]
  2. Wen, L. & Kosowsky, J. When Doctors Don’t Listen, How to Avoid Misdiagnoses and Unnecessary Tests. Thomas Dunne Books, (2013).
  3. National Organization for Rare Disorders – Turner Syndrome. [Website]

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