Your medical advocacy....It’s good to have a plan

If you are a patient with a chronic or life threatening disease, to the extent you can, you need to be actively engaged in your healthcare decisions.  And that’s great, as long as you have the stamina and voice to speak for yourself.  So what happens when you really can’t care for yourself?  Or when all of the information and decisions become overwhelming for your primary caregiver?  When I was caring for Bill, I attended a one day conference in San Francisco.  The topic: learning to be a better patient, to be your own health care advocate.  

Adriana Boden, a former colleague and Julia Halisey, a Bay Area Dentist, pulled together an amazing group of patients and professionals for a day of straight talk.  The event has grown into the Empowered Healthcare Community,

including a great book and an iPhone app. You can check out and like their Facebook Page.

Joanna Smith, LCSW, MPH is a professional Healthcare Advocate and just one of the many caring people I met at the conference.  She is the founder of Healthcare Liaison Inc. and Affiliates.  What exactly is a Healthcare Advocate?  “Health advocates are professionals who specialize in helping individuals navigate the healthcare maze to ensure they get the help they need, when they need it, and in the most appropriate setting.  This specialized profession has grown in recent years, reflecting its recognition as an effective resource for dealing with the growing complexity of our health care system, and its value to individuals and families of all ages.  There is a broad spectrum of health care advocacy firms ranging from large national organizations providing concierge services and relying heavily on telephonic consultation – to smaller local or regional firms like Healthcare Liaison that emphasize in-person assistance.  The key is working with an advocate with whom you feel comfortable.”

Cleaning out some files the other day, I rediscovered Joanna’s handouts and asked if I might reprint them for my readers.  I am grateful for her permission to share:

When You Don’t Know What to Do:  

Ten Tips to Guide You with Your Healthcare

What happens when you receive healthcare information that overwhelms you?  It can be about unexpected test results or the need for surgery.  It might be for you, your partner, spouse, child or parent.  Maybe you heard it while you were at the doctor’s office, at work or at home; you didn’t know what to do next, and you weren’t sure how to approach it.  You want to figure things out, but how?

In a crisis, everyone needs ways to “re-group”.  Here are Ten Tips that can help:

1. Take a deep breath before you do anything – including going to the internet!  There is a lot of information out there; make sure you go to reliable, impartial sources.
2. Don’t hesitate to ask questions.  It is normal to only hear bits and pieces of stressful information.  You need to keep gathering information until you are sure you’ve understood it all.
3. Bring a family member or friend with you to future medical appointments and have them take notes.  What you miss hearing, they’ll remember for you.
4. Don’t try to “go it alone.”  Decide who your support system is and use it!  People with the most extensive support systems manage stressful situations the best.
5. Make sure you know the potential risks and benefits of any step you’re considering, and take all the time you need to understand them.  Everything in healthcare has a possible “plus” and a possible “minus”.
6. Look at how you’ve managed uncertainty in your life before.  Some people like to make lists of what their options are and then order it by preference.  It’s a good technique to help you gain control over the situation.
7. If you’re overwhelmed by a decision to be made, break it down into smaller decisions.  For example, the question of whether you want to try an experimental drug becomes “I’ll try it for “x” number of weeks and then decide if I want to continue.”
8. Get a second opinion.  Insurance companies are generally willing to have you go for a second opinion before you make a major healthcare decision.
9. Realize that many insurance benefits have some negotiating room build into them.  If you make a treatment decision and your insurer says it doesn’t cover it, ask to talk with a case manager at the insurance company about your specific situation.
10. Make sure you feel comfortable with your healthcare provider.  If not, talk with friends, co-workers and other medical professionals about referrals.

Finally, stay open to new treatment options; in the future you could make a different decision.  Medical systems are complex, and constantly changing.  Give yourself time to explore the options before you make a decision, and know that you can change your mind.

(© 2009 Healthcare Liaison, Inc.  All Rights Reserved)

The bottom line is we must each be responsible for our own health.  We must ask the questions, do the research and become active partners in all decisions regarding our healthcare.  And when we can’t speak for ourselves….It’s good to have a plan B!