Communication Breakdown: It’s Your Right to Receive Complete and Understandable Health Care Information

Older man with his two adult daughters at a doctors appointment

In an ideal world, doctors, nurses, clinic staff and other health care professionals would be perfect communicators. They would share information seamlessly and accurately with patients, caretakers and each other.

Unfortunately, we do not live in that ideal world. Sometimes it takes extra effort and vigilance to make sure we understand diagnoses and treatment options and that referrals are being made properly, whether for our own care or for a family member whose care we are responsible for monitoring.

It’s important to have the confidence to ask questions about your health care when something seems wrong or is unclear. This can be particularly hard for older adults, who came of age during an era when it was considered inappropriate for patients to question what their doctors said.

While the vast majority of health care providers are experts in their field, fully committed to their patients’ well-being, they are not all expert communicators or brilliant navigators of complicated record-keeping systems. They are human, and like all humans, they err. When that happens, it’s crucial to speak up.

When her elderly parents became unable to keep track of their own health care information—appointments, aftercare instructions, medications, etc.—Merrill, Wisconsin resident Kristen took over that responsibility. For Kristen, the process has gone through several stages. It started with acknowledging a fundamental shift in the relationship between parent and child.

“There’s a reversal of roles,” Kristen says. “I’m still their daughter, but now I’m responsible for taking care of things and knowing about their health problems instead of the other way around.”

Next came the bureaucratic part—filling out the necessary forms to enable medical professionals to communicate directly with her about her parents’ health care.

“Having access to my parents’ health records was another really important thing because now I can see when the appointments are, and I can see the doctor’s notes and know if they left something important out of the after-visit summary.”

As she became more deeply involved in her parents’ medical lives, Kristen found that she often had to make extra calls to providers on her parents’ behalf to ask for clarification and additional information about their care.

Kristen’s ability to identify information gaps and press for answers came into play recently when her mother was referred by her ophthalmologist to the Council for vision rehabilitation services. Her mother’s vision loss stems from a neurological condition rather than an eye disease. However, between her neurologist, her ophthalmologist and the Council, that critical piece of information fell through the cracks.

“It started as a simple phone call to the Council to find out when my mom’s referral appointment was,” Kristen says. “I knew she was being referred to the Council for in-home vision rehab because I was on the doctor call when the doctor said she was going to make that.”

When she connected with the Council’s Education & Vision Services Director Amy Wurf, she learned that the Council had not received that vital piece of information about her mother’s medical history. Amy was surprised to learn that Kristen’s mother’s vision loss was caused by a neurological disorder rather than an eye disease, meaning that many of the strategies she teaches clients with common conditions like macular degeneration would not help.

When Kristen went back and checked the ophthalmologist’s notes, there was no mention of the neurological condition, so it’s not clear where the communication breakdown occurred. But thanks to Kristen’s strong advocacy, the vision rehab appointment was not a waste of time. She and Amy spent about 30 minutes on the phone discussing her mother’s needs. That gave Amy time to plan for the appointment appropriately, with a better understanding of how to support the client.

Kristen’s story is just one example of the importance of self-advocacy when dealing with doctors and other health care professionals. Here are a few takeaway lessons from this and similar experiences.

  1. If any information you receive from the doctor’s office seems wrong or unclear, don’t be shy about picking up the phone to ask questions or clarify a point.
  2. If you’re nervous about the conversation, practice what you’re going to say ahead of time.
  3. Doctors and their staffs don’t always communicate perfectly with each other, so it never hurts to double check about referrals and the transfer of medical information.
  4. If you are unable to read materials you have received, don’t hesitate to ask for them in a format that you can access, such as large print.
  5. It’s fine to ask someone else, such as a family member or close friend, to attend appointments with you as an advocate or simply another set of ears to make sure you understand everything correctly.
  6. This is the most important one: You have the right to complete and accurate health information that you can understand! It is ALWAYS okay to ask questions about diagnoses, treatments, test results or anything else related to your health care!

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