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leadership | Danny van Leeuwen Health Hats - Part 2

Three Words for the Year

By | Caregiver, ePatient, Family man, Leader, Musician | No Comments

CareGiving.com is sponsoring Note to Ourselves For 2016 and Three Words for 2017

My Note to Myself: Continue to do what I’m doing. Appreciate the small stuff (fresh running water, regular garbage pickup). Appreciate living within our means. Appreciate the warm rocks of my honey and my family. Appreciate my empathetic and skilled health team. Stick to my health and safety routine every day. Mentor bright young minds. Have fun when collaborating to do good work.

Three words: Balance. Caregivers. Onward.

Balance – Family, exercise, music, work. In that order

Caregivers – I do the work I do for caregivers – Honor the caregivers, help the helpers. We couldn’t exist without them.

Onward – Moving stuff an inch that has 10 miles to go, requires one foot in front of the other.

Happy New Year!!! Here we go – weeeee

Giving Thanks

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader, Musician | 4 Comments

I’m thankful for the superpower that I shared with my mother, Ruth, and son, Mike – accepting what is.

I’m thankful that I was born a  white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth – I appreciate that I have first world problems and learned from them that I must act to better the world.

I’m thankful that my best friend is my life partner and care partner – I strive to be equal to her love.

I’m thankful for my extended family, characters all.

I’m thankful for a 40+ year career as a nurse – privileged to serving during people’s most vulnerable moments.

I’m thankful that I was invited to join my grandmother, mother, and son during their end-of-life journeys.

I’m thankful that my grown sons love the strong women they married, revel in fatherhood, and contribute to community well-being – they keep me honest.

I’m thankful for my grandsons – OMG, what can I say?! Read More

Nowhere We Can’t Get to in an Hour

By | Advocate, Family man | One Comment

In our BvL WV30’s we lived in West Virginia – very rural, back-to-the-land hippies, eight miles up a dirt road. We participated in many communities. Our intentional community of families shared 180 acres of land, helped each other build our houses, raised our kids together, home schooled, with some facsimile of farming – garden, bees, fruit trees, chickens. Another community was the town emergency squad where I volunteered as a paramedic and my wife drove the ambulance. The community of young back-to-the-landers throughout the state was yet another community – playing music, partying, sharing skills, stories and resources. A different community was that of a state-wide network of people teaching Advanced Cardiac Life Support – meeting twice a year to train trainers and then traveling to teach at each other’s courses. Another, was the group of people lobbying for homeschooling in the state capital – conservative Christians alongside hippies. Although it’s the most rural I’ve ever lived, I grew up in Chicago and Detroit, I had the highest sense of community there in rural WV.

House WV Read More

Cuz I’m the Dad! That’s Why

By | Advocate, ePatient, Leader | One Comment

scoldingI wish my partner would carry his load. How do I get my kid to clean his room? She never cooks! How do I get her to talk to me? People in relationships complain and scold – expecting the other person to change and do whatever. Makes me cranky. Relationships are a two-way street in a setting with values, habits, and pressures. My kids once gave me a button for my hat: Cuz I’m the Dad. That’s Why! I have been resoundingly unsuccessful over 60+ years getting someone else to change at pretty much anything. Read More

The Thorny Thicket of Feedback and Advice

By | Clinician, ePatient, Leader | One Comment

When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring out if it works for you. I have an executive coach who gives me feedback periodically. This I listen to and follow to the best of my ability. My wife gives me feedback. After 41 years of marriage I know she’s right 95% of the time. I follow it 80% of the time. A family member asks me for advice and I’m reluctant to give it. Who am I to advise? What if it’s bad advice? Giving and taking advice or feedback seems so complex, fraught, welcome, and unwelcome.

What’s the difference between advice and feedback? According to the dictionary,

Advice is guidance or recommendations concerning future action, typically by someone regarded as knowledgeable or authoritative.

Feedback is information about reactions to a product, person’s performance of a task, etc., used as a basis of improvement.

They blend together for me.

Speaking with two teachers, math and art, we came up with empathy, modeling, and faith as the keys to giving great feedback and advice. Empathy. Listening to understand the person’s story, feelings, and perceptions. Modeling. Walk the talk. Faith. Confidence that the person is already great and can act on the feedback or advice you’re giving if it’s right for them.

So what about key factors for receiving feedback and advise? How about trust, readiness, and self-confidence? Trust. The adviser, feedbacker(?) is knowledgeable and has no other agenda than your growth or recovery. Readiness. I’m open. I want feedback. Self-confidence. I can do as suggested. Read More

Your Communities Need You!

By | Advocate, Caregiver, ePatient, Informaticist, Leader, Researcher | One Comment

Black Lives Matter! Disability Rights! Women’s Right to Choose! Gimme My DaM Data! Calls to action. In the early 60’s my parents were Fair Housing activists. They were the first whites in Illinois to adopt mixed race children and were the first whites in their all white neighborhood to sell  their house to an African American couple. They successfully invited Martin Luther King to speak in their suburban high school.  In the late 60’s I marched against the Vietnam War, sat in, and became a draft counselor. Now I advocate for people at the center of health care.

What motivates people to advocate for change?  What actions do people take? For my immigrant parents, , the Civil Rights Movement opened their eyes to discrimination in their community. As holocaust survivors they knew discrimination. Some of my heroes in healthcare transformation, such as @CristinLind, @ePatientDave, @ReginaHolliday, Mary Anne Sterling, and @JackWhelan experience the craziness of healthcare. They take political, community, and personal action.

Read More

Leading as Caregiver – It’s Complicated

By | Caregiver, ePatient, Family man, Leader | One Comment

Last week I wrote about Leadership, the Gift That Keeps on Giving. Several e-mails asked about the challenge of leading a health team in the role of caregiver.  Great question! A challenge of leading in a sometimes hostile confederacy of people who don’t even know they’re on a team. Same dilemma as the person who’s on the health journey plus leading when it’s not your life, but a loved one’s. Let’s make it crazier still, as caregiver, you might not want to lead, but there’s a vacuum sucking you in.

In my work life as a leader I see my role to attend to self-care of whole team, get stuff out of the team’s way so they can do their job, listen to what they need, advocate for them, keep them informed about the larger organization, set the tone and culture by example, delegate, keep things moving, plan for succession, and be trustworthy.

How does that help me as a caregiver? One thing I noticed about my mom during her last months – when alert she paid a lot of attention to the well-being of her team. As a caregiver leading that’s a challenge and maybe the most important job.  The person you’re caring for may take self-care of the rest of the team as minor desertions.  But the team can’t support unless they’re as well as possible in the midst of the stress. So I guess that the caregiver leader sets the tone of self-care by example. Getting stuff out of the way can mean helping to arrange schedules, transportation, meals, equipment, meds, and communication channels.  When my son Mike was dying, we had a weekly family call, Friday’s at 7p where we reviewed the past week’s events, next week’s schedule of appointments, needs of everyone, divvied up work and figured out who to ask for what. People often come out of the woodwork to help, but don’t know how. They can be a pain if they don’t know. Given direction they’re a blessing. Read More

Leadership – The Gift That Keeps on Giving

By | Advocate, Caregiver, Consumer, ePatient, Leader | 2 Comments

I felt so empowered by the best boss ever, Jim Bulger, Executive Director of a managed care company.  After I had been Director of Quality Management for 3 months, I told Jim that I didn’t think we were moving along at the speed he wanted us to go. “What do you think we should do?” Jim asked.  “Frankly, I think we need to start with you.” OMG, what had I said?  Have I no filters?!! To my joy and consternation, Jim responded, “Ok, teach me. Every morning 7am, 30 minutes, your agenda.” I had to get my act together fast. Several years later I asking Jim why he had done that. “I would have been an idiot not to. I hired you, didn’t I?” This was a gift to me.  A gift of trust, a gift of leadership.  I’ve learned over the years to value this gift of leadership.

Leadership is a foundation stone of maximizing the experience of people at the center of care. It’s not sufficient, but it’s necessary. Many opportunities exist to steer the boat, set the tone, build trust, value contributions, empower, take care of each other – opportunities for leadership. You can lead an organization. You can lead a team. Leader can be in your title or not. You can lead for a moment or a career. There is no ultimate leader.  It’s a relative position – a relationship position.

My mom led her health team during end-of-life. She set the tone, admitted and expelled team members. She set the culture. Once you were admitted to her team she listened to and empowered. It worked well. It’s an art as a leader to pull back and let others lead. She chose to lead. Read More

AACH: Communication and Relationships

By | Advocate, Clinician, ePatient, Researcher | One Comment

I attended the American Academy of Communication in Healthcare Conference in New Haven. The AACH is the professional home for all committed to improving communication and relationships in healthcare. About 200 people attended from US, Canada, Israel, Brazil, Belgium, Australia. Although most attendees were physicians, I met nurses, therapists, coaches, office managers, patients, sociologists, medical students, and researchers. A couple of very low-key sponsors but no vendors present. A pleasant relief. The conference was designed to maximize interaction, learn from each other, and build skills within work groups and special interest groups. Met several venerable experts. Very open and quite humble: We have a lot to learn. Especially about patient centeredness. Most exciting for me was a presentation by Sharon Schindler Rising, a nurse midwife, talking about Centering Groups – facilitated groups of 6-10 young moms/couples preparing for the impending birth of a child. A wonderful example of people-centered design with participants directing much of the flow of the monthly small groups. Professionals and services came to them. Groups often kept meeting on their own after the children reach one year old, sometimes for 8-10 years. New groups have been starting for decades. Evidence over that time showed significant increase in proportion of pregnancies going to full term and decrease in the proportion of low birth weight babies. One sad piece of the presentation was the description of the barrier caused by the advent of the electronic health record. One participant-generated practice had been for moms and dads to enter their own health data into the paper record: instant empowerment!  Not so with electronic record. People could no longer enter their own data into the health record. Shadow records had to be created. Lord, I was crushed when I heard this. I participated in several subsequent discussions about the infrastructure and skill set that would be needed to spread the Centering Group model to other settings. Instant learning!! Read More

Transitions – What you don’t know can hurt you

By | Caregiver, Clinician, Consumer, ePatient, Leader | One Comment

Still exploring communication across transitions.  This week speaking with clinicians. First, with case managers in an acute, short-term rehabilitation center serving people with recent strokes, heart conditions, or surgeries needing less than a month of intensive therapy. The transition points between nurses shift to shift, between physicians and between case managers, between patients, families, and primary care clinicians at discharge worked the best because they’re well documented and standardized. Tools are in place for the sharing of information. Either the hand-offs between clinicians are routine or patient education notebooks are completed the same for every patient: not the same contents but the same workflow. Since it’s not acute care (short stays)  there  is more for hand-offs and to develop relationships with the patient and their caring network and time for patients and families to absorb the instructions. A considerable volume of paper is generated, resulting in lots to read and lots to fax (everything by fax!). Maybe too much to read.  Information coming in with patients was less complete than information going out with patients. Communication was better in general and more complete if a person received all their care within the same health system.  The biggest risk? Not receiving information about critical medications, such as blood thinners, steroids, and antidepressants.

Next, a community Primary Care clinic. Again, communication best when a person is discharged from a hospital within the same health system as their clinic. Then a nurse knows when someone is going to be discharged or has been discharged.  The nurse calls the patient at home and can let the doctor know that the patient has their prescriptions filled, knows what to do, or if anything needs attention. For the patient discharged from a hospital outside the health system, the clinic often doesn’t know the patient was even in the hospital and has to scramble to gather information so they can support the person. The transition from home to office works least well.  Someone calls the office needing an appointment or has a question or needs a prescription filled. The quality of screening, triage, and information gathering varies widely  The more the patient or caregiver takes charge, the better the communication with the call center the better the clinic visit goes. Transition communication with specialists outside the system seemed quite a challenge without a common EHR for communication. Read More