You Don’t Understand Your Diagnosis(es) . . . and can barely keep up with your doctor is saying.

Posted on July 12, 2022

Health care should be simple. We expect to be treated as a priority and to receive optimal care, resulting in favorable outcomes. Unfortunately, this doesn’t always happen. With increasing frequency, our complex healthcare system creates the opposite effect. Patient confusion, fear and disempowerment, negatively impacts decision making, at a time when being able to do so . . . is essential.

Health care should be simple. We expect to be treated as a priority and to receive optimal care, resulting in favorable outcomes.

Unfortunately, this doesn’t always happen. With increasing frequency, our complex healthcare system creates the opposite effect. Patient confusion, fear and disempowerment, negatively impacts decision making, at a time when being able to do so . . . is essential.

Testing completed; your doctor has the results. S/he has diagnosed the ailment and is in the process sharing that with you at your office visit. You expectantly wait for the verdict. . . you definitely heard the CANCER word (or some other grave illness). Your mind now goint down that path - no longer hearing or able to absorb much of what s/he was saying.

A plan of care which may include additional testing, medications, and possibly a referral to a specialist, is recommended. Most likely you are sent home with information about your ailment and a date for your follow-up appointment.

What just happened? You’re numb, facing new and seemingly terrifying territory. As you prepare to leave the office, time seems to have stopped as you leave the office. There is also a good chance you are in denial – there must a mistake. Someone else, not me.

You know you must continue to put one foot in front of the other, while your ability to learn more about your diagnosis - when all you want to do is hide under the covers, determine a plan, then initiate the best option, then prepare for subsequent plan of care, life as you've known it has done a one-eighty, seemingly in the blink-of-an-eye.

Then, the questions start:

- What is this disease and how will it affect my life?

- What are my options?

- How can I fight it?

- What do I do next?

Make the most of every doctor’s visit. First and foremost, it is absolutely important absolutely keep doctor appointments. In one form or another, Advocacy – the ability to make your expectations and intentions known, while frequently reminding the members of the healthcare team who will be treating and caring for you - is going to be essential.

Advocacy requires communication. There are 3 options:

1. If you are not a good communicator, yet desire to advocate for yourself, watching other people advocate helps.

2. Enlist the support of a trusted family member or friend, with the ability to actively listen. This person will help you put pieces of the conversation you were not able to absorb during the visit.

3. Seek the services of a professional advocate.

Upon learning of a scary diagnosis, accept that you will not be able to absorb all of the conversation. A lot of information will be coming your way, during that 15–30-minute office visit as the physician reviews the outcomes of your test results, then lets you know of options, often followed by his/her recommendation for treatment (plan of care).

Ideally, the person accompanying you to the visit, should have familiarity with the healthcare system, the ability to actively listen and ask questions you have not yet considered.

A professional, board-certified patient advocate has knowledge and understanding of disease process, risk factors and experience navigating through our complex and fragmented healthcare system.

We do not make decisions for our clients, nor do we provide clinical services. Our function is to serve in an information and facilitation role helping guide and as necessary, navigate through the confusing healthcare system maze. We are able to empower by providing background knowledge of the system helping to determine options while feeling confident in voicing their care goals and choices.

Comments or questions are always welcomed. Don’t hesitate to schedule a complimentary 30-minute consultation with CarolAnne: www.patientadvocatesofswfl.com/appointments.