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#CarePlanning – a Mission From God

By December 5, 2016August 22nd, 2017Advocate, Caregiver, ePatient, Family man

My wife and I built a house together – the whole house, everything except drilling the well. While building, living and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. It took us several years to figure out that she hated 4×8 sheets of paneling and I loved real wood paneling.  Turns out that we agreed. We had different images associated with paneling. Communication is a bitch in the best of circumstances.

No wonder that a person’s health team struggles to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel. In its simplest form communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate?

Let’s focus on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?

For me, as a person with multiple sclerosis, I know that I want to progress as slowly as possible and I don’t want to take anything that will interfere with my pathological optimism. These are my goals. My biggest challenge is keeping my ability to walk 5,500 steps a day and not fall. I take a medication that helps but interferes with my sleep. I find that acupuncture once a month and massage every other week helps. I exercise to stretch my very tight muscles and keep my core strong so when I stumble (often) I catch myself (so far always). My physical therapist taught me to walk with a cane and had me fitted with a foot ankle orthotic for my foot drop. I’m accountable to myself to meditate every other day, walk every day, play my horn at least 4 hours a week, take the meds prescribed to me every day, etc. My primary care doc is accountable to be available to me within 2 business days by portal, make sure I get preventative stuff I need, monitor my lab work, etc. When I see my neurologist, he has two questions every time: Have you fallen and are you still playing your saxophone? Get the idea? I have goals and a plan. I monitor and communicate it.  I’m the connector for my team of more than a dozen. This is person-centered care planning.

More about #careplanning in the next post.


  • ddormer says:

    To make Danny’s point in a small way, yesterday, immediately after reading this I went to my my dentist for a cleaning and inspection. The hygienist said “Wow. your gums are perfect! No pockets at all. But what’s going on with your teeth? The staining is really bad.” (Note: She might have said things a bit more tactfully, but this is the substance.)

    “Do you drink a lot of coffee?”


    “Do you smoke?”

    “Are you kidding?”

    “Well, what are you doing or eating that is different?”

    “Nothing,” I responded. “Same diet. The only thing different is I use the prescription Chlorhexidine Gluconate oral rinse each and every day,” I said in my most proud little kid voice.

    There was a pause. “Oh my. You’re not supposed to use that every day. Just every once in awhile.” (I admit, I lost the details in what I was supposed to do at this point.)

    “But the bottle for the prescription YOU RENEWED WHEN I RAN OUT says ‘Rinse 1/2/ ounce for 30 seconds daily.”

    “Oh. Well. Nonetheless, you aren’t supposed to use THAT rinse every day. That might explain both why your gums are so pristine and why your teeth are so discolored.”


    She asked if I could stay for an extra half hour. “This is gonna take awhile.”

    Now I know this is a teeny tiny matter, and I am thrilled at the state of my gum health, but it does illustrate Danny’s point. Even on such simple matters as dosing and duration for just a prescription mouth rinse, communication is a… challenge.

  • Carol Band says:

    Great post! Keep playing the bari!

  • Sue says:

    Thanks so much for this post, Danny. I love how you help us see how difficult it is to be clear with each other even though we think we’re speaking the same language, and much we need clear communication when speaking with those involved in our medical care.