So many "E"s in Our Lives

There are so many "E"s in ePatient. We've got engaged, empowered, equipped and enabled as goals, and many of us are working diligently to achieve "all E"s on our progress cards. The resulting (hoped for) collaboration with our doctors is a big step from the position most of us are in when we get a chronic disease diagnosis.

ePatient by Anet

To take on an active role in our care we need to be empowered, equipped, enabled and engaged.  As we truly start working on upgrading our skills to effective levels there are a few other "E" things that will help us.  It's almost like a puzzle game. Finding those special "E"s can help you to become an ePatient. 

I think the missing "E"s are encouragement and empathy, and it is the letter E that is sponsoring this idea.

A letter from our sponsor.

You can use them in your own attitudes towards yourself, but they are most powerful when they come from someone else

With a sudden health problem that is unlikely to disappear you wish for superpowers just to get to the normal level that other people appreciate. Sometimes it's empathy or encouragement that gives you the key to gaining knowledge or improvement.

Empathy  - you know when it's not there - can be enhanced by some films or books as described in this blog post called "Empathy - The Secret Sauce in Physiotherapy?". Coincidentally my best source of encouragement has been my physiotherapist. See this post about a turning point for more details about encouragement/empathy.

Here's another story/post where coaching and encouragement were good for doctor and patient. I really liked Dr. Thiele Isip Tan's enjoyment of her patient's success.

Maid of the Mist Double Rainbow. Dad's last cruise

For me the old model of doing everything that I was told and feeling that poor progress was my failure has been left in the past. 

And on the positive side I read (and can't find the link) that having a chronic illness and treating it very well is a secret to a long life.

Here's another link that I liked Placebo, Nocebo, and Expectations: Leveraging Positive Outcomes. The idea that even non-verbal clinical behaviour can influence patient outcomes certainly helps to explain why some patients thrive with a certain course of treatment while others don't.

Should I Stay or Should I Go?

Thanking about a change in medication brings this song to my mind.   Should I Stay or Should I Go? by The Clash

Changing medication is a dilemma unless you know that your current medication isn't working. In that case, most likely you will try what you and your doctor collaboratively decide on as the best choice for you. (That last statement describes the ideal situation between doctor and patient.)   

The real problem comes when you think the way you are feeling now is just not good enough. Making this decision is tough. With a chronic disease you get used to feeling less than wonderful most of the time and you may not even realize that "better" is achievable. 

WikimediaCommons DeRuzne

It's a gamble. Do you hold the cards you have and stay with the status quo, or take a risk that a new (to you) medication will improve your life? If you can manage to go to work every day, but have no energy at all once you get home can you live with that? 

Here's an abstract from a poster that was presented at the American College of Rheumatology meeting this year. It's called "Understanding The Preference to Stay With the Status Quo". It seems that the positive emotion of hopefulness has a large part to play.

To me hopefulness and optimism go together. Could this mean that optimists change drugs more readily? Are they more receptive to the current "Treat To Target" strategy?

For more about the push for treating to target here's another link to a paper by many leading rheumatologists. 

Goals and Encouragement in HealthCare

Communication and collaboration between doctors and patients is a topic that I am happy to see in Tweetchats. In the last #HCSM on Sunday evening, August 18 at 9:00pm the final question dealt with goal-sharing with healthcare practitioners. Is there standardization, how are goals communicated to HCPs and what if the goals that the doctor has for the patient are different from the patients' goals?

This link leads to a storify (my first one ever) of some of the enlightening responses. You can see some of the responses for yourself.  Tweetchats are an outstanding way to get a view of a subject from more than one perspective.

                                   Iris                     AMcKinnon

It was a fascinating topic and my favourite story was by Dr. Iris Thiele Isip Tan. Her patient was so excited to reach her goal that she jumped up and hugged her. So achieving the goal empowered the doctor and the patient! as Dan Goldman said. And neither will forget the moment.

That is the ideal result of collaboration between doctors and patients to reach goals.  

Which brings me to what I think is the secret ingredient that helps people become more literate and engaged.  Encouragement. When people manage to achieve even a small step on the road to improvement some congratulatory words from the doctor are a real accelerant for many. 
Here's a commercial for encouragement. I just saw it through reading RA Warrior's blog this morning. Being encouraged is often an exceptional event. We can all make it more common.

Here are some guidelines to goal setting:

 

Whether your goal is climbing a mountain, planning a party or improving your health there are ways to reach that goal.  When you take a self management course you find out that goal setting is one of the most useful tools in the chronic disease management kit. 

                                     Wait! Do I need to open the box?

There are no secrets to effective goal setting - just guidelines to help you succeed.  You can chose something very difficult but then break it into achievable steps. That's your Action Plan. Then work on each step one after another.

1. You need to be specific about your goal. Not "I will lose weight next week" but "I will not eat after dinner on Monday or Wednesday" for example, or "I will walk for 1/2 hour on Tuesday and Thursday in the evening".

2. As in the example above you want to be able to measure the goal. Not eating after dinner on two days is the goal and it is easy to tell if you succeed.

3. It also has to be realistic and achievable. If you know in advance that you will never accomplish it you need revise your goal. A rule of thumb is to rate the likelihood you'll do it on a 10 point scale. Your confidence should be at a 7 or better.

4. Your goal should be relevant to you and your plan.

5. Making it specific as to time is also a proven method of making your action more likely. 

Even with these you should think about what obstacles or setbacks might come up and make a plan for that too. If there's a surprise party and you need to eat cake you could choose another day to abstain from sweets.

                        Digital image courtesy of the Getty's Open Content Program
 

Climbing this mountain in one day would be beyond me now but I'm sure I could do it by preparing gradually.

Good Luck on your new plan!