How to Strengthen Communication with Your Medical Team when Facing a Difficult Diagnosis

By Joseph D Stern, MD, author of Grief Connects Us: A Neurosurgeon’s Lessons on Love, Loss

If you or a loved one has been given a life-changing diagnosis, your medical team is going to be a significant part of your journey. As a neurosurgeon, I regularly work with patients facing difficult diagnoses and have seen how increased communication and empathy between patient and provider can create a better experience for both.

But, having also lost two vibrant loved ones to sudden illnesses, I know how difficult it can be to actually achieve these ideals: managing intense feelings while communicating with medical providers and making critical decisions is overwhelming. At these times, having a strong, mutually supportive relationship with your providers can make all the difference.

To that end, I want to offer the following tips to foster positive communication with medical providers.

1. Be honest about how you feel.
   Be honest about how you feel with your doctor and medical providers. Opening up helps your medical team connect with you, so that they can offer greater, more personalized support. It will also allow them to provide more appropriate guidance when it comes to medical decisions.

While you are certainly welcome to keep personal thoughts private, giving your doctors insight into your priorities and feelings allows them to treat you as a whole person who needs care, instead of simply a body that needs medicine.

2. Clearly state your intentions for your level of involvement in care decisions.
   Be clear about how much you and your loved ones want to participate in care decisions. For example, some patients put their full faith in their doctors, and want all decisions to be made based on their doctor’s (or multiple doctors’) expertise. Other patients expect to be involved in every decision made by a nurse or doctor. Don’t assume your doctor knows how you feel about this: explaining your desired level of involvement up front will help to prevent needless miscommunications or misunderstandings down the road.

If you are someone who prefers to entrust all choices to your doctor, know that it is important not to ask your doctor to leave details out or to downplay the seriousness of the medical situation. These conversations will indeed be difficult; however, understanding what to expect after a diagnosis helps you to make appropriate decisions, especially if it comes to how you plan to spend precious, potentially limited time with family.

3. Carefully listen, take notes, and ask questions during conversations with your providers.
   When emotions are high and everyone is feeling overwhelmed, it is difficult to keep track of details. It is especially easy to miss something if your doctor uses a technical medical term you don’t know, or only gives a set of important instructions once.

To help foster good listening, here are some tangible steps you can take before and during your visit, adapted from advice offered by the Hospital for Special Surgery:

Keep a notebook of care, and write down your questions and concerns before your visit with the doctor or specialist.
Show that you are listening with body language, where possible.
Take notes after conversations, even if everything seems easy to remember.
At the end of each conversation with the doctor, repeat back to them what you took away from the visit, just as you would debrief after an important work meeting. This helps to ensure you are on the same page.
Bring a family member or friend, if they are willing, for a second set of ears.
Do not be afraid to ask for help in communicating. Sometimes cultural misunderstandings, doctor-patient power dynamics, personality differences, or language barriers may make communication especially difficult. Hospitals typically employ social workers who can help in many cases; in cases where a language barrier is present, hospitals have a legal and ethical obligation to offer professional, high-quality language interpretation services to facilitate communication with your provider.
Connect all of your or your loved one’s doctors, specialists, and surgeons so that they can work together to coordinate care.

4. Assume your medical team is doing their best for you, remembering that they work hard for a lot of patients.
   The individuals on your medical team are not only coordinating care for you, but they are working hard for many other patients who are also struggling. Emotions are high, and it is normal to feel instinctively protective when concerns arise; still, assume the best of your team, avoiding placing blame. Frame questions for your team in a non-judgemental way.

It may help to remember the particular difficulties that healthcare staff members face behind the scenes: medical systems are often stretched thin, and providers have to share their time between a number of patients equally in need of care.

Often there is anxiety about timing as you wait to hear back from your providers: remember that your team is equally eager to receive new information and share it with you, but they need time to process, interpret, and fully consider test results before presenting options to you.

5. Talk with your loved ones about these guidelines.
   Ask family members to support and join you as you take steps to keep communication positive, clear, and open with your medical team. Medical professionals know that families facing the potential loss of a loved one are under stress, but it is still very important to respect the humanity of the medical team, remembering that you are all in this together.