Shy, introverted ... connected

Check out this great presentation by Sacha Chua. The message is useful for kids too.

View more presentations from Sacha Chua.

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10 mistakes every patient makes: Trisha Torrey's new book

Most patients don't understand that their own healthcare is not a right, it's a responsibility.  --Trisha Torrey

Trisha Torrey, Every Patient's Advocate for About.com, frequent Health 2.0 contributor, and active Twitter colleague has just written and released You Bet Your Life: The 10 Mistakes Every Patient Makes.

 

Part consumer guide, part recipe book, part "doctor-patient dating" guide, this book is practical, forward, and detailed in its recommendations to patients like us. The most remarkable aspect of the book is that it takes dozens of complex situations such as patient privacy, patient safety, provider apologies, confirming a diagnosis, to name a few, and breaks them down into usable bites of kitchen table wisdom that can be ported, shared and easily applied. In fact, since reading the book, I have cited dozens of passages in response to questions from friends and family. 

While clever and witty and humorous at times, this is probably not a book that you would hand to a person in crisis who may already be feeling overwhelmed by a complicated situation. No. It is not a book of comfort, per se. But it is an essential book that trains us to make better choices, so it would make an excellent addition to most home libraries. If you have a friend in crisis, why not buy the book for yourself and help your friend navigate the situation with Trisha's insight? There will be plenty to share and your friend may be sparked by some of the advice. 

To showcase just a bit of Trisha's style and convince you to check out the book, below is a paraphrasing of information included in Chapter 6, "An EmPatient's Strategy for Choosing Dr. Right."

Q - How should I establish a doctor's credentials?

Start by looking the doctor up on the state licensing boards. Take a look at the credentials, and make sure that the license is up to date. (One "dirty little secret" of state licensing information is that some states require the practitioner to keep their license up to date themselves, p.70)

If you have a complicated care issue, then check for problems, errors or malpractice by Googling "Dr. Firstname Lastname" plus the word "error" or "complaint" or "malpractice." See what you find.

Also make sure that the doctor is licensed and practicing in the same realm. (She once saw a doctor practicing as a psychiatrist who was not licensed in Psychiatry, but in Internal Medicine!)
 

Once you have found a provider relationship you like, she offers a few things you might want to do to keep it positive:

• Say thank you. If you feel well-served then go on and say thank you.
• Refer your friends to the doctor. 
• Send a "report card" via http://diagKNOWsis.org/reportcard to highlight the positive or where there is room for improvement.

This review would be remiss without emphasizing that creating health and focusing on prevention of illness is the great-empowered patient stance. Trisha's book does cover this idea at the back of the book, in Chapter 24, "Avoiding the Whole Ugly Healthcare Mess: Prevention." She makes a few quiet points about prevention that deserve amplification:

• Prevention is about taking responsibility for your own health, no matter how good or bad it is, and taking the steps you can take in spite of health challenges; 
• Prevention is about following doctors orders once the two of you have determined a course of action;
• Prevention is about stepping out of a comfort zone, or "happy" zone
• Prevention is about education. Keep on learning and you'll avoid engaging with less effective treatments.

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The soul of the child

Sometimes I feel like all I do is think, wonder, dream, write, and work to change the health care system at the level of the individual. But, in reality, that's just my hobby.  My real job is Mom and home is where I do all of my primary research on healthy living for individuals. Call me a "techno-domestic sensualist." Which is why, for this post, I'd like to celebrate the soul of the child. 

I look at the soul of my child as an aspect of my own soul, and use this framework for keeping in touch with my child's inner life without being overbearing. 

I recently experienced being interconnected with my son when he had a tough year in school (last year). It wasn't tough in a traditional way; there were no bad grades, no attention issues, bullying or behavior problems dogging him. His grades were excellent, his teachers liked him, and his behavior was just fine. The trouble was, his heart and soul weren't present.  He wasn't engaged in what he was doing in the least. He was drifting. He was sad. He didn't want to go to school.

This is the kind of disconnect that makes a mother crazy. I mean, when your kid needs help, I for one prefer to have a clear failure to point to, not a murky, uneasy, sinking feeling that something unnamed is amiss when we go to the school admin and ask for help. And yet, the soul of my child (which is how I framed the problem we had) was whispering in a quiet voice and moving to its own rhythm.  You can imagine the challenge I had bringing this to the table in a traditional school environment. 

I spent roughly 4 months advocating for our son at our neighborhood public school. The work included: initiating mediation with our Principal, lots of bedtime conversations, staying in constant contact with the school and asking for specific changes to his school day. It took dozens and dozens of hours from work, and was truly uncomfortable to become such a squeaky wheel. But what was the other choice? If not a parent, then who will advocate for the soul of the child?

As I stepped through this process, I was mindful of just how fortunate we are to know how to work the channels. There are millions of mothers and fathers who don't know how, or are too strapped for time, vision, confidence, or money to take even the first steps outbound to the school on behalf of their child.  

I am going to skip some detail about how things resolved. Suffice it to say that he recovered by the end of the year, but that we have also moved him to an independent school where he is thriving.  

Here's the point: Pay attention to the soul of your child. Trust your instincts. When you feel burnt out and as if you just cannot do another thing about the situation, take a rest and count it as a blessing that you possess the tools to be a powerful advocate. Your child's soul is watching, and learning how to do the same for itself someday.

Related

• Best bonding activity for families
• Coco's weekly meal plan: Kid tested
• ECO-canciousness, even at your house

______

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"Doing" health

My comment, "No one knows how to “do” health" on last night's #hcsm radio session brought some puzzled tweets my way.  Let me expand:

Health is learned
On the most fundamental level, a health encounter in our system is a learned transaction. It is a learned experience. No adult or child knows how to “survive” cancer, or “beat” diabetes, or be a parent for that matter when he or she starts on day 1. Quite the contrary.

Health is developmental
Health is a developmental process, a series of baby steps deeply and inextricably linked to cultural norms and expectations. Since so many of those norms are being challenged right now, it is a great time to think about how we learn to navigate the health system and what opportunities exist today to make improvements.

Oversimplifying this I realize, but if you were taught not to ask questions of your doctor, then you'll probably need more encouragement to start asking questions and participate more. If you were taught (from experience or environment) that medicine is a crap shoot, then you may be more comfortable advocating for yourself or another in a health care setting. You might feel righteous ... as many do. Or, you may simply give up from the stress of it all and become uncompliant.

We learn by participating
My point is that we learn to "do" health. We learn by participating. By showing up and "muddling on through" in many cases. We learn by accepting uncomfortable treatments, procedures and interventions; by asking questions and wrestling with the answers we get until we are able to take a step forward. The maddening paradox is that healing often brings discomfort, at least initially.

And more discomfort is hard to tolerate when you're in a healing crisis.

"Just right" health care
A patient learning how to participate in her own care can look a lot like Goldilocks from the children's classic. An empowered, participatory patient won't stop looking and learning until she finds what feels "just right" right to her. While the social web can help a patient climb a steep learning curve, so may pharma, tech, friendship, prayer, play, and (____you name it here___). These are all powerful cultural modalities in the healing repertoire.

So, while we don't start out knowing how to "do" a health crisis, the silver lining is that wherever you begin your challenge along the continuum of health, you will have an opportunity to learn and develop. That's right; we are all beginners. Even doctors and nurses are beginners when it comes to their own health crises. And while anything can happen, there is no guarantee that it will.

Get better at health by practicing it
Whether it is learning to eat better and exercise; stay calm and organize a response to a terrifying diagnosis; work like hell to seek alternative treatments; or advocate to “free the damn data,” as ePatient Dave says - adults learn how to “do” health by participating in it.

The good news is…we get much better at "doing" health with practice. Start when you are healthy.

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Related posts:
Communicating with doctors: Practice when you're healthy
Are we betting on the "me" in medicine?

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