magic lever | Danny van Leeuwen Health Hats - Part 5


By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man One Comment
Let me tell you about our family’s experience as a team, talking, supporting, and coordinating during the terminal phase of our son, Mike’s death from metastatic melanoma. Mike was living near Buffalo with his girlfriend, going to school, my wife and  I lived in Albany, and my other sons lived elsewhere. Mike’s girlfriend’s parents (I’ll call them in-laws here – it’s shorter) also lived in Buffalo. We struggled with logistics, emotions, practicalities, money, clinicians, treatment, life. One day when my wife and I were in Buffalo at the in-law’s we realized we all cared about Mike and needed to coordinate, support, communicate regularly. We also realized that while Mike was the central, principal person, the whole expanded family was hugely impacted and impactful. We set up a weekly conference call-this was before smart phones, Skype, other media. During these calls we addressed everything: pain relief, bowel problems, transportation to appointments, where and whether to get a specific treatment, test results, which clinician, where Mike lived, fund raising, relationships among us, fear, grief, grief counseling, humor, location of and caregivers during Mike’s post surgical care, school, equipment, whether and when to start hospice, the weather (travel). While we didn’t include clinicians, we learned together more about what treatment was available and what kind of clinicians fit in with Mike’s outlook and our system. Found a radiation oncologist who especially fit in and connected with Mike and he became our lead clinician. We systematically went around to each person on the call, starting with Mike, everyone shared their issues, information, whatever. Everyone was heard, we got much better at active listening, we felt included, supported, loved. We knew what was going to be done during the week: assignments, appointments, travel. Sibs joined when possible. A moment for me was when Mike’s girlfriend was upset with me, because I told her mom the result of a test before she could tell her mom. It seems so small in the scheme of dying, but it helped set a tone, removed an annoying pebble in her shoe. These calls (and in person when possible) continued through to after Mike died. The day after he died, we went around the room, with all of both our family and the in-law family recounting how Mike died, where everyone was, how we came to the place of being together at that moment. Before he died, Mike told me that his last year was the best year of his life. He was in love and he was loved. Open dialogue amongst us made a difference. No unfinished business. The grief felt clean.  I’m telling you this story now because I attended a symposium yesterday sponsored by the Massachusetts Department of Mental Health about a treatment for psychoses from Finland being tested at Advocates, Inc. called Open Dialogue.  Once I get permission to share details with you from the presenter, Mary Olson, PhD, I will. It reminded me of our experience with Mike dying and beautifully reflected the values often spoken about at the Society for Participatory Medicine and in this blog. Open Dialogue – a magic lever for best health.  More to come.

Peace with Aloneness

By Caregiver, Clinician, Consumer, ePatient, Family man No Comments
All humans have at least two things in common, they experience tragedy and aloneness. Aloneness features prominently in the health journey. We fortunate ones have supportive, often present health teams. Still it’s our journey to travel – often alone – as an ePatient, caregiver, or professional.  What is aloneness? This past week  I’ve asked many.  Some refer to loneliness, some to being alone. Loneliness is being apart, excluded or by choice. Loneliness feels like less – less than wanted or expected or experienced – the down next to the up. Less fun, less love, less power, less inclusion, less function, less help, less future, less control. Aloneness is not with others. People mostly speak of aloneness as a respite – relief from humdrum, pressure, worry, relationships, routine.

Sensitivity by other members of the health team to loneliness or aloneness challenges. How do we listen for loneliness or aloneness in others? Either its worn on the sleeve or its buried. If we’re empathetic enough to see it, how do we react? Respect it, pull or push, silent presence, distract, hug? The hardest challenge as a member of health teams – distinguishing between aloneness and loneliness and responding. For myself, I appreciate those who notice something’s off, are present, open a door, stand at the threshold, and don’t expect me to walk through it. I relish my aloneness from time to time. Peace with loneliness and aloneness is a magic lever of health.

First, I Listen – Improv

By Consumer, Musician 3 Comments
As I wrote a few weeks ago, First, we listen, is the tag line of Advocates, Inc., my current employer. The power of listening continues to move me in my work and my music. I’m finding it relatively easy to listen 50% of the time, 75% is a serious challenge.  My energy comes out of my mouth – somehow, mouth open closes my ears – must be a check valve. It’s not just opening my ears, it’s pausing my mind. What’s helped is my music. Working on improvisation, I often lose my place in the tune. I’ve been trying to listen to the rhythm and chord changes and play fewer notes. Play a few notes, pause, hear and feel the rhythm and chord structure, play a few more notes. Focus on the space between beats and notes. Play simply. It’s technically easier and makes more sense and I get lost less often. Hmmmm. At work and playing with the combo I get more nods. Nods are good. Some people are master listeners – my wife, my 2-year old grandson, my primary care doc, and Miles Davis. Is listening a magic lever of best health?

Work-Life Balance

By ePatient, Musician No Comments
Once again, I’m self-focused as I transition from sabbatical to full employment.  This too will pass:) After 2 weeks I’m acutely aware of my struggle to keep up my exercise, diet, family time, and music, not to mention all the non-work professional activities that accrued during my sabbatical. Fortunately, my new work environment is both intensely busy, focused, rewarding and actively supportive of work-life balance. My strategy so far is to book family time first, only a little scaled back. Then I’ve cut my music time easily in half, but I haven’t yet figured that out – not cutting any group playing – the combo and big band. Two gigs coming up. The job has a jam once a month. Longer between lessons? Oh, lord. Exercise is harder. Maybe ride the trike every third day and not every other day. Strangely, diet is easier. I’m so much more deliberate about my meals – packing a lunch. I think my diet is better and I’m losing the few pounds I’ve gained during the sabbatical. Longer between massages? I hate to. Makes so much difference in my overall well-being. I will maintain this weekly blog. You all are a gas and a half. Much less TV. What’s suffering most is time with my wife. I definitely need to schedule some date time!! Work-life balance: a magic lever of best health.

First, we listen

By Leader No Comments
First, we listen. The tagline for the organization I work for now. Inspiring! Challenging! As an e-Patient and professional change agent in health care, it’s music to my ears. How do I learn about a new organization in a new environment? How do I listen? At what pace do I jump in and participate? Much of what I hear leaves me an enthusiasing teenager: OMG (Oh my God), that’s fabulous! Every hour I discover something else that I didn’t know I didn’t know. Some of it starts my wheels turning to solve the low hanging puzzles of organizational alignment (everybody rowing in the same direction). But a new guy, is a new guy. He’s curious for only a minute. Then the team work begins. So, I’m listening, integrating (cataloging and categorizing) what I hear and see, building relationships, asking, What can I do for you?, taking a breath, playing some music, hanging out with my grandsons.  Life is good.  Listening – a magic lever for best health.

Trust- Another Magic Lever

By Advocate, Caregiver, Consumer, Leader No Comments

Recently, Joan Vitello, Associate Chief Nurse at Brigham and Women’s Hospital, inspired me talking about ‘trust’ at a nursing leadership seminar. I’ve thought about it every day since. Trust is a magic lever of best health – for e-patients, caregivers, professionals, teams, and organizations. Trust accentuates the possibilities: Trust that I’m OK, however I feel. Trust in my team members – they have best health in their hearts, whatever’s in their minds. Health is a marathon – trust fuels the fire of persistence – keepin’ on. I’m not a religious person, but I’m spiritual. Trust = faith. Having multiple sclerosis I know if I don’t use it, I lose it. Takes many times longer to regain it, if at all. Trust is like that. Lose it and need a recovery plan with help.

I’m in Boston. How many people, even those without a family member directly injured by the bombing, have lost trust in the rightness of the world? My four-year old grandson experiences an iPad video game differently – a little bomb to deal with. He pauses, takes note. A little innocence lost. Trust?
A valuable commodity – trust. May I take care of it wherever.

Managing team culture from the inside out

By Advocate, Leader No Comments

In January I wrote about the magic lever of organizational culture change (link). Today I’m preparing for a nursing leadership seminar about organizational culture and change for people who lead teams in much larger organizations. While I mostly want to hear from the participants – sharing experiences has much more value than anything I could share – I have the following pearls:

  1. Be the ideal – act as you expect others to act – the golden rule. Simple but tough. You have most control of this
  2. Hire for culture – You can train skills, but you can’t train for attitude. The best opportunity is at hiring.
  3. Leverage diversity -build different skills, ways of thinking (Myers-Briggs), and life experiences into your team. 
  4. Experiment, learn with your teams – who knows what will work? Try stuff out. If it doesn’t work try something else
  5. Engage patients & caregivers – it’s the right thing to do, but it also changes the conversation dramatically 
  6. Be transparent with information – Whether you have grade A or grade C data – share it. Let people comment, criticize, engage. Tell stories. Welcome scrutiny.
  7. Market the change – You can’t change everything or everyone, but you can change the people who matter (the link takes you to Seth Godin’s blog)
What do you think?


By Advocate, Leader No Comments
Innovation: such a pregnant word. Innovation usually accomplishes something pretty basic – a solution to a problem we know or don’t know we have, a new or long standing problem. Innovation can be a tool, a process, technology, or a service. Innovation includes widespread use of the solution. Setting diagnostic or clinical treatment aside, the health journey for the whole team primarily involves people: behavior and relationships. Innovation in health behavior and relationships leads us to magic levers of best health. This week I heard about primary care teams that weren’t built around the licensed clinicians (physicians, physician assistants, nurse practitioners, nurses) The key people seemed to be the patients, their caregivers, and the offices’ health coaches (5-7 coaches per clinician). Patients have assigned coaches to partner in their health journey and serve as a bridge to services and clinicians. I was hearing about Iora Health and Mass General’s Center for Primary Care Innovation. This could be innovative! It’s a magic lever. Phew!

I say could be because the challenge with so-called innovations such as health coaches is to accomplish  widespread availability. What did it take to nurture that potential innovation and how does it spread? Well, somebody was dissatisfied with the status quo, became an entrepreneur and had the gumption to find or create a space for the idea, process, and service to germinate and flourish. The entrepreneur(s) had to align incentives (funding to develop a test and a payment model to feed the service) in a market that needed and wanted the result. It takes a very different kind of change agent to create and pilot something than spread it.

Magic levers of cultural change

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader No Comments
I’m traveling these days in many bands of committed people and groups striving to improve the health journey for themselves, their loved ones, and patients in general. These bands include advocates, novice and seasoned entrepreneurs, trade associations, providers of care across the continuum; and governmental and quasi-governmental entities. Each band slogs through terrain of incredulity, frustration, anger, hopelessness, and desperation with winds of dedication, confidence, hope, and possibility at their backs.

While traveling in these many bands, I periodically step aside to rest and contemplate change – process and cultural change. What do I expect, what do I want, am I using my limited energy wisely? Frankly, I don’t expect much. Cultural change in a complex system with nonsensical incentives, without clear leaders, with so much money, and seemingly stuck in cement is a bitch. I just aspire to a little better, some of the time. I want my family and fellow travelers to get the care they need, when and where they need it. I want to have fun while traveling. My personal energy is holding up – so far so good. But is my energy being used effectively? Do I make a difference


By Caregiver, Clinician, ePatient, Leader 2 Comments
As a nurse, caregiver, informaticist, and consultant, I help others. Intriguing concept – helping – much dynamic tension. Altruism, emotional gratification, self-satisfaction, egotism, persistence, profit, dependence. After nursing for several years I joked that nursing was an acceptable form of nosiness. I’m involved with people at intimate moments in their lives. I am gratified to participate. As an informaticist, helping clinicians and patients utilize electronic tools, the hardest work is listening to what help was needed and ensuring that the tools served the users rather than the other way around. It’s not about the tool, its about the patient, caregiver, and clinician. Caring for family members,  I’ve struggle with the tension of what I wanted to do to help and what help was wanted. Akin to parenting power dynamics. Occasionally, I’ve had to stop helping because we crossed a boundary of tension: My contribution wasn’t really helping, my feelings were hurt, I felt trapped, I was treated poorly, I wore out. As a consultant, I often found a misalignment between the help asked for and the help wanted. Confusing and disheartening. There’s a lot of helping in health care. How can helping be cleaner, regenerate, be powerful? Attending to personal, organizational, and system health of the helper – magic lever to best health. Fitness, rest, communication, leadership, fiscal soundness all help the helper. What challenges do you face as a helper or receiving help?