When You Don’t Know What You Don’t Know

Posted on July 9, 2022

Oh, to have a dollar for every time a client speaking of their healthcare system experience has said, “I had no idea” . . . “totally clueless” . . . “where to begin” . . . “what do I (we) do next” . . .” first it’s this way, then it’s going in another direction” . . . “I’m not being listened to. . . “so many moving parts."

Oh, to have a dollar for every time a client speaking of their healthcare system experience has said, “I had no idea” . . . “totally clueless” . . . “where to begin” . . . “what do I (we) do next” . . .” first it’s this way, then it’s going in another direction” . . . “I’m not being listened to. . . “so many moving parts.”

Understandable though for those that find themselves suddenly thrust into a personal health crisis, or that of a family member. It is my experience these phrases aren’t uttered as a result of shock of the immediate situation. It’s concern of what comes next.

Our complex and complicated healthcare system is like visiting a foreign country. A good part of the language spoken is, at times, difficult to understand. Consider finding yourself in the emergency room of any hospital, confronted with:

· Lacking an understanding of the medical terminology, diagnosis, prognosis and options.

· Relying on the direction of the healthcare team.

· Making (sometimes quickly) the difficult, often life-changing, decisions that need to be made.

· Distress of not being heard, or worse, having your concerns ignored.

Feelings of confusion, frustration and annoyance in a system that tends to be loud 24/ and is difficult to understand, are real. I’ve been there many, many times myself - as a professional patient advocate, also as a patient and the spouse, daughter and parent of a patient.

Following what is often a battery of tests, receiving the diagnosis comes next. Understanding the disease process and determining next steps is vital. Unless you know the questions to ask, the answers can be difficult to find.

Advocating, for yourself or a beloved family member, for the best care requires discovery of possible options, requires focus. Research is essential. Without those questions it will be difficult to make those ever-so-important decisions.

Healthcare is complex with discoveries happening daily. How much information is on the internet? How reliable is that information?

Collect information from trusted resources including government websites and medical libraries. There are also groups and organizations that focus on specific health diseases and health conditions such as the American Cancer Society, the American Diabetic Association, and the NIH (National Institutes of Health) Library of Medicine. Are there sites say the same thing and make similar care suggestions?

Also, search out and investigate patient groups who have personal knowledge about treatment options. Sources include the Mayo Clinic, the American Cancer Society, NORD (rare diseases) and Patients Rising.

if you do not understand what the s/he is telling you, say so! Worries or concern about asking the right questions? Don’t be – how else are you going to learn. respectfully ask questions until you are confident you understand what the physician or surgeon is communicating.

Take notes. It is advisable to have another person, an extra “set of ears, present. As the conversation winds down, ask yourself if you know what is going to happen next? If you don’t, ask. Afterward compare notes looking to verify an understanding of what was said during the conversation, while also identifying any gaps.

We hold physicians in high regard, respecting their years of dedication and commitment to healing the sick. Some people, out of concern for upsetting the doctor, fear questioning a decision. During times when a you are not in agreement with the decision, bear in mind questioning her/his decision is in your best interest.

In the event you are not able to get answers to your concerns, it is always advisable to get a second Opinion. Should you feel uncomfortable due to a strong bond and an equal level of trust, seek the assistance of a professional patient advocate, who will be working for patient’s best interests, not those of the hospital or the insurance company.

With knowledge and familiarly of the system, a professional advocate has regional knowledge of the best-of-the-best. Where the reach is more expansive, the advocate, an expert of networking, does not hesitate to reach out to colleagues throughout the country.

Easing the burden patients experience while navigating the healthcare system. We empower clients when health care decisions about options and confidence in voicing their care goals and choices when decisions need to be made.

Questions, comments or to learn more visit: www.patientadvocatesofswfl.com to schedule your complimentary 30-minute consult.