by Margo Corbett
LiveLung Contributing Author
I remember when I received a cancer diagnosis. The rest of my appointment and those for months after are a blur. I had just moved to a new city and didn’t have a spouse, family member or close friend to help me so I muddled through on my own. I nearly died from complications following the surgery. Ten years later my husband was diagnosed with kidney failure and told he might not live through the night.
What do both of these incidents have in common - no one helping during medical appointments and hospitalization. Questions went unasked - interventions left undone. Now, my husband and I accompany each other to every doctor’s appointment. We have learned to be appointment advocates for each other. I am convinced neither life-threatening situation would have occurred had we had an advocate helping us during doctor appointments, in the hospital, in thinking things through at critical times and advocating for us when we couldn’t do it for ourselves.
Below, these and other reasons to have an appointment advocate are discussed along with what he or she can do to help you get the best care possible and to prevent medical errors.
1. Research shows you immediately forget one-half of what you are told at doctor appointments. Your advocate can:
a. Take notes for you. It is very difficult to take notes and, at the same time, be attentive to or interact effectively with your health care provider.
b. Prompt you should you forget questions or concerns on the list you prepared prior to your appointment.
2. When you receive a cancer diagnosis your ability to interact effectively at that and subsequent appointments is greatly diminished.
a. It is very difficult to think clearly enough to ask questions.
b. It may be even more difficult to remember the answers or actions you need to take going forward.
c. Your advocate can step in and interact with and / or for you by asking questions, clarifying what is said and taking notes.
3. Be an encourager. Your advocate can provide positive reinforcement as you stick with difficult treatment or lifestyle changes. They will have a deeper understanding of your needs. It will enable them to be more empathetic.
4. Two heads are better than one. Your advocate can help you:
a. Recognize symptoms, piece information together and help report to your medical team.
b. Think through your options and assist as a sounding board for decision-making during and after your appointment.
c. Help you remember details from the appointment that might not have been captured in the notes.
d. Recognize when you may be creating your own medical error(s) by not taking a medication properly or not following your treatment plan.
5. Your advocate will have the knowledge to fight for you when you can't, if the need arises.
If your advocate can't attend all of your appointments, obtain permission from your provider to tape appointments so you can listen afterwards to document answers to your questions, his instructions and other vital information.
For more information go to www.savvypatienttoolkit.com.
Margo Corbett is author of The Savvy Patient’s Toolkit & founder of The Savvy Patient School.