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magic lever | Danny van Leeuwen Health Hats - Part 6

It’s a Caregiver Xmas

By Caregiver, ePatient, Family man 2 Comments
I started crying today. My wife reminded me to rinse my mouth with salt water. I had a tooth extracted. Silly, but my heart was full. What would I do without my caregivers? My wife, my sons, daughters-in-law, sister, even grandsons. My 4 year old grandson, when we play jungle animals, wants me to be an animal with balance (a snake – can’t fall down). My one year grandson makes sure I have my cane when I go out. When diagnosed with MS I felt like I won a lottery I didn’t buy a ticket for. Caregiving is an act of love. It occurs to me that most chatter about best health doesn’t honor the caregivers. Honoring caregivers – a magic lever of best health – Xmas for caregivers. My thanks to my caregivers – from my heart. How can we better honor the caregivers?

Just-in-Time Decisions

By Advocate, Caregiver, Consumer, ePatient No Comments
  1. Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient?
  2. Will the treatment prescribed (any treatment) cause depression?
  3. Will acupuncture make a difference?
  4. Will all this attention to one family member negatively impact the other members?
  5. What do I do when my doctors disagree?
  6. Can we afford…
Making a decision based on evidence at the time decisions are needed is a challenge for e-Patients and e-Caregivers. Participating in PCORI (Patient-Centered Outcomes Research Initiative) and S4PM (Society for Participatory Medicine) heightens my awareness of the importance of evidence for decision-making and the misalignment of much evidence with the decisions facing e-Patients and e-Caregivers. The medical model of research favors a focus on body parts, diagnoses, and medical treatments. The dissemination of that research favors positive results and academic journals. No access to what didn’t work. Need to rely on advocacy groups and social media for readable and understandable evidence. Recently, several of us made a proposal to the PCORI Board in Boston:
Expand the scope of fundable research questions to include non-diagnosis related questions:
  • Identify mechanisms and key success factors of patient-professional partnerships, patient engagement (actions individuals must take to obtain the greatest benefit from the health care services available to them), care coordination, shared decision-making
  • The impact of peer-to-peer (patient-to-patient, family-to-family, caregiver-to-caregiver) relationships
  • The impact of social determinants (conditions in which people are born, grow, live, work and age, including the health system) on best health
What do you think? What are the magic levers for this change?

System Magic Levers of Best Health

By Caregiver, Clinician, Consumer, ePatient, Leader No Comments
I am an e-patient, a caregiver, a nurse, an informaticist, and a leader.  I live and work where the patient, the caregiver, the clinician, and technology intersect. Writing this blog for the past six months has helped me focus on magic levers of best health. The magic levers of best personal health include: Rest, diet, exercise, resilience, network, team, trust, mindfulness. The magic levers of best organizational health: leadership, purpose, alignment, trust, vulnerability, mindfulness, learning, execution. How about system magic levers of best health?  Here’s my first stab at that:
  1. Mutual goals and plans set by the health team (people, their caregivers and clinicians)
  2. Tools and relationships maximize the health team’s ability to follow the plans set to meet mutual goals
  3. Accessible evidence supports just-in-time health decision-making by people and their caregivers
  4. The entire health team works from the same goals and data set
  5. Transparent health care costs
  6. Healthy health care organizations
  7. Hardwired continual learning from evolving experience and evidence
  8. Financial and human incentive alignment
What would you add? More in future posts!

Magic levers in Medically Induced Trauma

By Advocate, Clinician, ePatient, Leader 2 Comments
You’re not alone, we can help. Sigh… such reassurance in those words.  Medically Induced Trauma Support Services (MITSS), Inc. is a non-profit organization founded To Support Healing and Restore Hope to patients, families, and clinicians who have been affected by an adverse medical event or unintended outcome.

Linda Kenney, the founder of MITSS says:  In November of 1999, I found myself at the sharp end of an adverse medical event that nearly took my life. There was no acknowledgement of the emotional impact that might follow, and I certainly wasn’t prepared.  This event made me extremely aware of the lack of emotional support in place for patients, families, and care providers following these incidences.  I knew that I was very lucky to have survived and felt a personal sense of responsibility to address this hole in the healthcare system.  I made it my mission to see that the healthcare community and public were made aware of the emotional impact that exists following adverse medical events regardless of the cause.  I also became aware that the medical community is not typically set up to provide the type of support needed following the hospital stay.
Three magic levers for best health reflected at MITSS:
  1. Unintended consequences – trauma – can lead to powerful, positive outcomes for individuals, organizations, and the community
  2. Continual learning depends on open and honest communication
  3. To benefit from the whole health team, the whole health team needs support

Health Hats off to Linda Kenney and the growing family of MITSS at the start of their second decade!

Magic Lever – Trust

By Consumer, Leader No Comments
Best health builds on trust. Trust in yourself, trust in your health team, trust among your team, and trust among the leadership of your health organization. Health is possible without trust, but best health is not. Trust is like the golden rule: simple, obvious, painstaking to attain. Trust contains self love, an open heart, self-confidence, vulnerability, fairness, humility, single-minded purpose, communication, risk. Best health is part genes, part environment, part right living, part luck. Much that can’t be controlled. Trust is somewhat controllable. Trust in yourself is marginally controllable.  I’m fortunate that I mostly trust myself. I feel like I’m trusting myself when in doubt about my choices I default to accepting my decisions and actions as right and good. I’m happy with 75% success. Doubt and regret take its toll. With MS I have to budget my energy carefully. Doubt and regret sap my energy. Trust in your health team is also somewhat controllable. I’m fortunate that I can select my health team members. Selecting some means rejecting others. I remember when I was grieving the loss of my son, Mike. I went through 3 grief counselors before I found one that I trusted and worked well for me. I felt lucky that I could find three. Many can’t. Although its been  years since Mike’s death, my grief counselor is a member of my health team and will always be. I trust him. I’m open to using his counsel when I need it. Trust among your health team can be elusive.  Fortunately, a team you choose is predisposed to trusting each other on your behalf-single-minded purpose. But when your team is a surgical team, a multi-disciplinary team, an inpatient team, a nursing home team, a rehab team, you have far less control of that team. They may or may not trust each other. Your advocate can be helpful in communication and single-minded purpose. A team that trusts each other will be more likely to focus on your best health, communicate with each other about you, be open to your uniqueness, and practice safely and kindly. As a leader, the most rewarding activity for me was building a team that trusted me and trusted each other. Once built, those teams did amazing work for you. The most distant trust is the trust among the leadership of the health organizations that care for you. Those organizations include clinics, hospitals, diagnostic centers, rehab facilities, home care … any organization serving you. Frankly, in my experience few health organizations are themselves healthy. The bedrock of a healthy organization is a leadership team that trusts each other. Trust within the leadership team is the same as trust for yourself: open heart, confidence, vulnerability, fairness, mission, communication, risk. Patrick Lencioni writes eloquently about organizational health. Read more in his book, The Advantage: Why Organizational Health Trumps Everything Else in Business. I have spent most of the last 20 years of my career as a change agent and choreographer. The heights attainable are directly related to organizational health, especially the trust within the leadership team. Sustainable best health of an organization is hard work and elusive, but hugely rewarding for customers, staff, professionals, and leaders. More about organizational health in future posts.

Magic Lever – Adherence to Health Plan

By Caregiver, Clinician, Consumer, ePatient, Leader No Comments
Unfortunately some providers call adherence to a health plan – compliance. This unhelpful label implies singular focus on the patient, as in “they aren’t compliant with taking their meds”.

The ability to develop and adhere to a health plan is probably the most complex magic lever of best health. Developing and adhering to a health plan involves studying population health; evidence-based best practice; collaborative relationships, behaviors, language, and alignment of the health team; standardized work flows with on-the-spot improvisation; electronic and non-electronic tools; leadership; and management of cultural and social habits and challenges. Setting up systems to make adherence more likely is challenging and labor intensive. The effort has to be worth the outcome.


Population health analytics – studies to predict those groups of people for whom adherence planning would yield the greatest benefit to health, experience, and cost. Evidence-based practice – adherence planning should be based on evidence – knowing it’s likely to do what the health team expects. Collaborative relationships, behaviors, language, and alignment of the health team – the intricate choreography with stars and cast who can speak to, understand each other, and work together for a common purpose. Standardized work flows with on-the-spot improvisation – adherence planning is largely production work repeated across groups of people. Yet each of us is slightly different and unique. Teams respond as people and circumstances change. Electronic and non-electronic tools – Adherence is not a point in time, but occurs and adjusts over time. Well meaning and determined people need help. Leadership – Creating and maintaining adherence friendly systems needs inspired leaders. Dance without a director is just a rave. Management of cultural and social habits and challenges – A person who doesn’t get a lunch break can’t take a mid day medication with food. A single parent with several children depending on public transportation can find it difficult to make a physical therapy appointment three times a week. Sensitivity to such challenges and public policy advocacy can increase the likelihood of adherence.
In short, adherence is serious work for everyone. It is not compliance.

Magic lever – resilience

By Consumer, ePatient, Family man, Leader No Comments
Tragedy is the common unifying force of life and organizations. The more seasoned you are, the more likely you are to have experienced personal and organizational tragedy – a death, diagnosis of serious illness, job loss, legal difficulties, downsizing, loss of a contract, loss of key staff, loss, loss, loss.


My daughter-in-law texted me, May the force be with you, as I was in the midst of a personal tragedy.  What is this force, this superpower? How does a person or an organization survive a loss, a tragedy and regain best health? Resiliency. According to SAMHSA resilience is the ability to:
  • Bounce back
  • Take on difficult challenges and still find meaning in life
  • Respond positively to difficult situations
  • Rise above adversity
  • Cope when things look bleak
  • Tap into hope
  • Transform unfavorable situations into wisdom, insight, and compassion
  • Endure
The American Psychological Association reports the following attributes about resilience:
  • The capacity to make and carry out realistic plans
  • Communication and problem-solving skills
  • A positive or optimistic view of life
  • Confidence in personal strengths and abilities
  • The capacity to manage strong feelings, emotions, and impulses
Can resilience be learned? How can we increase the resilience capacity for ourselves, our families, our organizations, and our communities? What tools can help increase our resilience capacity?

Magic lever – Setting a goal for best health

By Caregiver, Clinician, ePatient No Comments

A best health goal is a milestone in a health journey. These goals can be set individually or collaboratively with a health team. Goals can run the continuum from lose 10 pounds in the next 3 months to make an appointment with a dermatologist to stay alive until my grandson’s wedding. The goal can be one of several, such as walk 50 feet with assistance, manage pain without IV’s or injections, and have meals brought to my home so I can be discharged. Goals need to be specific, measurable, possible, and explicitly stated. One of the characteristics of valued members of my health team is that they help me set goals and attain goals. If they can’t do this, they aren’t part of my team. The goals that I have set with my team this past year include lose 35 pounds in 9 months, walk at last 5 miles per week, do eye exercises 10 minutes every day until the double vision decreases, and stretch my quads twice a day. I have been able to meet all but the last one. Factors for success for me have been that the goals were stated and written; I kept a log of my activity and progress; and these goals were discussed at every opportunity when I met with members of my team, including my wife and my family. As a nurse it’s inexplicable to me how disconnected goal setting can be from the patient. While every profession has a treatment, care, discharge plan, often the patient and family don’t explicitly collaborate in setting the goals and mapping progress happens in the patient record or between professionals and not consistently with the patient and family. How can we get better at setting explicit measurable goals with our health team?

Superpowers

By Caregiver, ePatient, Family man 2 Comments

What are my superpowers? What are your superpowers? Love having this conversation with my grandson. Today, he has atomic breath like Godzilla (especially in the morning). I first had this conversation with my son when we first knew he was dying of cancer. His superpower was poetry.

i am not things.
i am sums of things,
guessing that i’m part of God,
wondering if there is some place
where my soul will go
from where i might look down
with advantages my eyes did not have
and see the tops of trees
which i used to walk beneath for
shelter from rain and sun,
and see the way things go together
like continental tracts of land
punctuated by water and lights
and roads and other concrete artifices

Preface to “the way I become about dying” by Michael P Funk, 2002

When diagnosed with MS, my superpower became the ability to accept what is. Superpowers are a magic lever for best health.

What are your superpowers?

Exercise – the instant magic lever

By Clinician, ePatient No Comments
Seems like a no brainer. Exercise, the instant magic lever for best health. Profoundly affects spiritual, mental, and physical health. One of the ways I discovered that I had multiple sclerosis was my inability to stay on a bicycle. I kept falling off when I stopped. Receiving the diagnosis was sobering at best! Sometimes very sad and depressing. Six months after my diagnosis I bought a Recumbent tricycle. I cried with relief that I could still get my favorite exercise. Can’t fall off a trike. Good for my soul, good for my heart, good for my quads. The direct connection between activity and recovery is so well documented.

How have we redesigned healthcare to include more activity? In that last 20 years patients walk right away after surgery and recover much more quickly. When I was an ICU manager we incorporated more activity into our standard operating procedure. We needed to use the families and caregivers to increase activity. We struggled with reluctant patients. But more activity for patients led to fewer complications, shorter stays, and better outcomes. Good for staff as well.  Have we taken this far enough? Do we build our organizational systems to maximize activity for staff?  I wonder if the magic levers of best health are obvious but fundamentally challenging-like the golden rule. Obvious and tough. 


What have you done to include physical activity in the routine of care giving?