Caregivers Please Share - Your Resources and Communities of Encouragement

Caring for a loved one or as we would call it being a health companion is noble.  It often doesn't come with a lot of credit.  Many of us are unprepared.  And it can be stressful.  In our new resource page we listed 11 things that we wished we would have known and we learned through our journey.  

http://www.pillpouch.net/resources/ 

The last thing we listed is a 'Community of Encouragement' and we need your help growing this list of resources.  Please share your books, groups, online communities, religious groups that you found helpful and encouraging.  By sharing you can help others like you navigate the complexities and stress of caring for a loved one.   

Leave your tips, resources and communities of encouragement in the comment section of this blog.  Your input will help others!

Indiana Jones and the Ominous Bridge

As a community and through sharing our experiences we discovered a lot about the current bridge for patients to self management, achieve health literacy and getting well at home.  This bridge looks and feels a lot like the ominous bridge in "Indiana Jones and the Temple of Doom".  We could say it exists but it would take Indiana Jones to cross it.  So how can we release patients and expect them to take the responsibility to cross this scary, rickety, collapsing bridge over crocodile invested waters?  We shouldn't be surprised when so many return, don't make it or even the bravest and most prepared get half way there, look down and then freeze. 

It is not just about giving the patient support to cross this bridge, we need to build a new bridge together.  Our goals are starting to converge.  Patients want nothing more than to get home and get well at home.  And now health systems because of the Hospital Readmission Reduction Program (HRRP) and as of October 1, 2014 the Medicare Spending Per Beneficiary (MSPB) are making it a priority to get patients well at home. 

Together we can build a bridge that is person centered and looks at the factors beyond just health.  This bride would invite patient to be part of their care and let them know there will be people to support them.  This bridge can be  welcoming, sturdy and have benches to rest along the way.  There are many kinds of bridges that can be built but all should have the same destination for patient to get and stay well at home.  

Here are our architectural drawings of the bridge we designed together over the last 4 months.  All the elements are important but there were two particular elements that seem to be the foundations of our bridge.  

1. An invitation to the patient to be part of their own care. (Ed inserted a quote from some famous person "people don't like to take orders, they like to take part."  This summarizes why the invitation is so important.
2. A patient created and updated medication list.  We believe this could be the keystone element that triggers a patient's knowledge and confidence in their health.  See below for a bit more detail. Also read Charles Duhigg's book "The Power of Habit" and specifically the section on the new Alcoa CEO's commitment to shareholder to focus solely on 100% Safety with an absolute commitment to 0 safety incidents and how focusing on Safety allowed management and union to come together, created record profits and quality.  

We are excited where our journey has led us and know it is time to test out our bridge by welcoming patients to take the first step.  Indiana Jones might be disappoint by the lack of adventure crossing this bridge. 

Take this with you to your doctor visits and pharmacy and keep it in case of an emergency. Go to your pharmacist every six months to have them review your list. Keep it up to date.

List your team especially know your friendly pharmacist who can coordinate and review your medications and list all your doctors, nurses and other team members so care professionals know who they are working with.

Finding Our Why

According to Simon Sinek, the author of "Starts With Why" and the concept 'the golden circle", the reason the Wright brothers, Dr. Martin Luther King and Apple are successful despite having access to the same or in some cases less resources is because they understand and were driven by the ‘Why’.  He believes what distinguishes successful ideas, companies or movements from unsuccessful is they start with the why (thanks Neil for sharing).

So it got me thinking about our why.  People want nothing more than the feeling of independence, identity, control and comfort of home whether they are sick or well.  My grandma Stella, like a inmate doing life who's only way out is hatching an escape plan, went to great lengths to escape the hospital.  She wanted to be home!  Hospitals, although sterile for a reason, are not conducive for healing. They aren't designed for emotionally and psychologically healing and some would argue without these physical healing can never be sustained.

Our Why

To empower elder to get control of their health so they can get and stay well at home.  This is where and what Stella wanted to be, at home and well.  Ask any nurse what the most frequently asked question they get in a hospital setting "when can I go home?" or "when am I getting out of here?".  Our homes are a fundamental part of us, our healing and our personal wellness (identity, emotional health, etc.).  Could this be our mantra “Bringing health, home.”?  

Our How

By providing the tools, awareness and approach to build the skills, knowledge and confidence to get control of their health at home.

Our What

Self directed health awareness to get and stay well at home (easy, visual, accessible and familiar tools, techniques and a personalized hands-on approach).  

Our community is developing a tool kit and the approach for a  person and their family to self direct their health with the coaching and support of health professionals to build skills, confidence and knowledge to get and stay well at home.

We have identified the elements that are important to health confidence.  We discussed them here last week and I have notes expanding on each element here:

With this family, spouse, caregiver and practitioners can better interact with your world to support you.  There is research that shows that to build skills, get knowledgeable and feel confident it is very important that this is built through hands-on application.  There are many teaching models that show positive results but the two most successful are the ‘Teach-back’ method and Dr. Coleman’s coaching model (simulated learning). We found that for my grandma Stella the keystone element was a visual medication list that built her knowledge and confidence in her medications and her health.

This week we will go over what this bringing health, home looks like and how we are going to make it happen.  We developed a design language and need to finalize the high level requirements.  We all agreed that we need to design and test in small, quick iterations with feedback from people we are trying to bring health home.  

Hospital 2.0 = Learning Commons for the Sick and the Well

Follow me here ACA -> readmission prevention -> reduced Medicare Spending Per Beneficiary -> medical home -> patient's ability to self manage -> patient health literacy.

At the root is education.  Josh Luke, national leader in health care and readmission prevention, writes in his book Readmission Prevention, "patient self-management can be the most effective tactic if a patient and his caregiver comprehend the plan of care."  Patient and family education and their ability to be knowledgeable and confident in managing their condition and having the skills to do so is the 'most effective' way to transform our health systems and eliminate the above symptoms.  The primary function of our future health systems must be facilitating education.  

The future hospital will look more like an education center, a university, maybe more of a technical hands-on university, a learning commons.  Hospitals of the future will hire teachers, technical coaches, demonstration chefs, dietitians, gardeners and community volunteers will lead activities and personalize and empathetic information exchange.  The heart of the hospital will be hands-on learning commons where staff and community volunteers will support personalized information exchange and education to support people in our communities.

The future hospital will be a place where all practitioners will also work on prevention with community members and families coming to the "Hospital" or Community Health Learning Commons.  It won't just be about treatment but eventually these sterile industrial structures will evolve into welcoming place for the well.  

See you in the future.  

NOTE: Elderberry is working on a community design of an person directed education system that helps elder patients get and stay well at home.