All Conditions & Treatments

How to Communicate with Your Lupus Healthcare Team

Adapted from a talk to the SLE Workshop at Hospital for Special Surgery

Living with lupus is uniquely different for each person. Given the complexity of lupus, including the limited time you may have during your appointment and the many doctors with whom you need to communicate, it can be challenging to share your experience with a doctor or healthcare team member. Furthermore, your symptoms may vary from day to day, as may your response to treatment and any potential side effects. It can be difficult to prioritize what you should communicate immediately and how to do this efficiently.

Understanding the Meaning of Health Literacy

Healthy literacy is the degree to which a person can obtain, process and understand the basic health information and services he or she needs to make the most appropriate and best health decisions. It is a shared function of social and individual factors that are mediated by a patient’s education level, cultural background and language proficiency. The Institute of Medicine (IOM) states that “health literacy goes beyond the individual. It also depends upon the skills, preferences and expectations of health information and care providers: our doctors, nurses, administrators, home health workers, the media, and many others.”

It is equally important for the healthcare team to have the communication skills to provide health information that is easily understood by patients, families and caregivers. In this sense, health literacy is a shared function and responsibility: The patient must communicate effectively with the healthcare team, and the clinicians must be skilled in and committed to providing the education and support the patient needs to understand the illness and treatment decisions. It is relevant that the level of health literacy of a patient is the single most important indicator of health status. It directly impacts patient’s adherence to treatment regimens and health outcomes.

Sometimes medical information is too complex to fully understand. Anyone – especially those feeling unwell, frightened or tired – can have trouble understanding and using health information. When an individual is feeling sick or stressed, he or she may not be able to absorb information and process it in the way that is optimal to make appropriate health decisions. Stress and anxiety levels can be high during a medical appointment, making it hard to focus on what is being said. It has been estimated that only 12% of US adults have the health literacy skills needed to manage the demands of our complex healthcare system. There is a major discrepancy between the health information people receive and what they are able to fully understand. In addition, medical science progresses rapidly and information changes constantly; this makes it difficult for patients to retain information they hear and to adjust to new information provided.

Health literacy barriers present themselves in various ways. Differences between the provider and the patient with regard to culture, gender, sexual orientation, race, socioeconomic status, religion, age and/or language can all be potential barriers, as can the cultural competence of health professionals. Studies indicate that culturally diverse patients are more likely to experience multiple health disparities in access to care, communication with healthcare providers, and medical quality of care and outcomes.

Low health literacy can be influenced by other factors as well. For example, a patient may have feelings of embarrassment or shame about his or her competency and language proficiency. Patients may worry about whether to trust what they are being told but may not share these concerns or feel that they cannot question the doctor. Patients often respond to a doctor in a way that asserts that they understand the information given, but in reality, they need to be asked additional open-ended questions to clarify their actual level of comprehension. One of the questions doctors should avoid during a medical encounter after sharing information with his or her patient is “Do you understand?”

Identifying Barriers to Effective Communication

There are a number of potential barriers to effective communication for both providers and patients during the medical encounter, and with the healthcare system at large. The diagram below shows some of the areas that the provider and patient experience when entering into the exam room. These include time constraints for the provider and patients feeling rushed, cultural and language barriers, health beliefs and values that may contradict what the provider is recommending, the power differential between the provider and the patient, and personality differences that may influence the efficacy of the encounter. The shared shaded area in the middle of the diagram highlights a few commonalities that the provider and patient may share that also influence one another’s ability to communicate.

Venn diagram of patient/provider communications. Patient circle reads: Shame and discomfort, fear and anxiety, stress, English language proficiency, education level. Provider circle reads: Time constraints, authority figure, frustration, level of interest and curiosity. Patient/provider overlap section reads: Health beliefs and values, culture, personality, language, power dynamic.

This video from the American Medical Association demonstrates the multiple challenges patients may experience regarding their health and healthcare; it is a striking example of how all people of every age, background and education level are experience barriers to health literacy:

Learning Ways to Enhance Healthcare Communication

Shared Decision Making

Shared decision making involves sharing with the healthcare team your unique values, preferences and cultural beliefs and practices that may affect your medical decision making. Your healthcare team can provide the best care if they fully understand what is important to you and where you are coming from, especially in regard to treatment choices and your follow-through with medical recommendations.

Patients need information that is easy to understand in order to make informed choices and take charge of their healthcare. The healthcare team should be aware of and respect a patient’s cultural and spiritual beliefs. With the permission of the patient, it can be helpful to and we encourage you to engage the patient’s support system (caregivers and loved ones), in the decision-making process. There are three elements of shared decision making:

  1. Both the healthcare provider and patient must recognize and acknowledge that a decision is, in fact, required.
  2. Both the healthcare provider and patient must know and understand the best available evidence concerning the risks and benefits of each option.
  3. Decisions must take into account both the provider’s guidance and the patient’s values and preferences.

There are several communication tools a provider and patient can use to help ensure that what is said is understood. The “teach-back method” is a research-based intervention with the goal of promoting the development of a shared treatment plan, quality and safety.

Under this method, after the provider gives the patient information about an illness or treatment options, the provider asks the patient to repeat the information back in his or own words. The patient can also take the lead and say, “let me make sure I understood what you just said” and share what the patient understood. The teach-back method helps the provider and patient make certain that the information given has been explained clearly and understood by the patient. This way, if any ambiguity or misunderstanding remains, the provider can re-explain in a manner the patient can understand, and there is an opportunity to further clarify from the patient’s point of view.

Another communication tool is called Ask Me 3®, created by the National Patient Safety Foundation (NPSF). This technique is designed to improve communication between patients and healthcare providers. It encourages patients to become active members of their healthcare team, and it promotes improved health outcomes. This technique encourages patients to ask three important questions during every medical encounter. Studies show that patients who understand health instructions make fewer mistakes when they take their medicine or prepare for a medical procedure. They may also get well sooner or be able to better manage a chronic health condition.

The key questions are: What is my main problem?,” “What do I need to do?” and “Why is it important for me to do this?” This NPSF video demonstrates how to use these questions during your medical visit:. At Hospital for Special Surgery, the Ask Me 3® technique is taught to patients in the VOICES 60+ program prior to the medical encounter. These are quick and easy to remember questions, especially when patients may have many medical questions to remember.

Tips and Strategies to Prepare for Your Visit

  • Make a list of questions and symptoms in advance.
  • Stay focused.
  • Ask questions at the start (or near the start) of the visit.
  • Take notes during the visit.
  • Ask if you don’t understand a medical word or instructions.
  • Repeat what was said to ensure understanding.
  • Ask for help – interpreters, nurses, social workers and other members of the team are available for support.
  • Bring a friend or family member for support, if possible. Another listening ear can be helpful.
  • If you have a healthcare team consisting of multiple specialists, open the lines of communication between the practitioners to speak with one another and that ensure everyone is on the same page.

Important Questions to Ask

  • How will this diagnosis/illness affect my life?
  • How will this medicine help me?
  • What are possible side effects to this treatment?
  • Why do you think I should have this test?
  • What other treatments are available?
  • Where can I get more information and support for my illness

Summary and Takeaways

Living with lupus is challenging, and navigating the healthcare system can complicate matters even more. Be proactive in your care, ask questions and talk about your concerns with your healthcare providers. Make sure your concerns are fully addressed before ending the conversation with your provider. This is your time to use to your benefit. Remember to stay focused on asking priority questions first, as time is limited. We hope you will use these tools and resources made available to you in order to communicate more effectively and so that your healthcare team can best serve you.

Learn more information about the SLE Workshop at HSS, a free support and education group held monthly for people with lupus, their families and friends.


* We hope that you find these resources helpful; they are provided for informational purposes only and are not intended to comprise a complete list. Links to sites are not meant as endorsements or recommendations by HSS or its faculty.


Juliette Kleinman, LCSW, ACSW
Senior Social Work Manager, Rheumatology
Hospital for Special Surgery  

Summary by Sarah Kencel
Social Work Intern and Coordinator, SLE Workshop
Department of Social Work Programs

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