Tag

superpower

Best Spiritual Health, Dying

By | Caregiver, ePatient, Family man | One Comment

Sixteen years ago on November 18, 2002, our son, our brother, our friend, Michael Funk, died of metastatic melanoma at age 26. Mike said that he wasn’t born with a tattoo on his butt telling him how long he had to live.  What a gift.  Mike was a gift. His perspective about dying was a gift. One day we were sitting at the kitchen table talking about dying and superpowers. Mike thought that he and I had the same superpower: we both accept what is. Yup, he died young. That’s life. You open your heart and tragedy just walks right in. What’s the alternative? Closed heart? Not for me.

Welcome, my dear Health Hats blog readers, let me introduce you to the birth of Health Hats, the Podcast. We are here to empower people as they travel together toward best health. Best health includes physical, mental, and spiritual health. Today’s blog post and podcast are about Mike who found his best spiritual health over the last year of his life, as he died.

I decided that my inaugural podcast should be about Mike. The timing is right and my heart is full and open. I’m taking a Seth Godin course about podcasting. This fellowship, this learning community, has given me strength and tools. On my 50th birthday party at the Potato Barn in Schoharie County, NY, my boss, colleague, and friend, Bob Doherty interviewed Mike.  It was five months before he died. That video is a treasure. The pressure in my stomach and chest threatened to leak out through my eyes as I listened to every sound and silence. Can I really do this? I must be nuts. But remembering the roller coaster ride of humor, wisdom, misery, love made it possible, no, necessary to go on. That first night after deciding on this subject for this first podcast, I couldn’t sleep from bursting with emotion, I recorded all the stories I could remember about Mike and his dying. The next morning I called Bob and we talked about his perceptions of those days – interviewing Mike, me at work, and the spiritual health Mike had. We spoke about the death of Bob’s wife who died a couple of years later. This podcast blends all that.

Here’s an excerpt of the poem Mike wrote shortly before his death that I read on the podcast.

the way I become about dying

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 things go together

like continental tracks of land

 

I am this very moment, dying

from headache tumors that

erase my cognitive ability so that I might

be retarded when I wake up tomorrow,

or I might know answers,

or I might still be guessing

 

Links

Mike Funk Podcast HHP001

Interview with Mike

Interview with Bob

Full poem of Mike’s

Note: I have applied for listing on iTunes, Stitcher, Google, and more. As of Nov 18, 2018, 08:30, these aren’t live. But they will be in a few days. I will podcast at least twice a month. Please subscribe.

Best Health at End of Life #001

By | Caregiver, ePatient, Episode, Family man | 6 Comments

Episode Summary

Best Health includes physical, mental, and spiritual health. Michael Funk, my son, died at age 26 on November 18, 2002, of metastatic melanoma. Mike found his best spiritual health in the last year of his life as he died. As Mike said, I wasn’t born with a tattoo telling me how long I had to live. This first episode of Health Hats, the Podcast, celebrates Mike’s journey through a montage of an interview with Mike several months before he died, a conversation with Bob Doherty who conducted that interview, and stories about my experiences with Mike. Listen as we try to make sense of this reality.

Episode Notes

Links

Interview with Mike

Interview with Bob

Full poem of Mike’s

About the Show

Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen and I have worn many hats in my 40+ years in healthcare as a patient, caregiver, nurse, informaticist, and leader. Everyone wears many hats, but I wear them all at once.  We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel.  Let’s make some sense of all this.

My guests and I reflect on what works for people, professionals, and communities in their journeys toward best health: learning, making choices, communicating, and adjusting to realities. We can range from personal, clinical, technical, entrepreneurial, organizational, to whatever interests me at the moment. Join the ride!

Readers of Health Hats, the Blog, we will publish a Podcast in at least two of each month’s weekly posts. To subscribe go to the blog https://www.health-hats.com/

CMS Quality Measures for People

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | 6 Comments

Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.

I was nominated to sit on a CMS (Center for Medicare and Medicaid Services)/Battelle Quality Measurement Development Technical Advisory Panel (TEP). The TEP had its first meeting in Baltimore last week. I was one of 19 Panel members (and one of two with expertise in all four of the selection criteria -Consumer Perspective, Clinical Content, Performance Measurement, Coding and Informatics).  The TEP seeks to improve the process of developing measures. It isn’t trying to develop measures. The good news is that the TEP gelled as a team and the CMS/Battelle leaders seem open to, if not eager for, actionable advice. I am honored to have been asked to sit at this table.

As a Patient Activist and a change catalyst, I appreciate the formidable forces of inertia and the current business realities of the medical care industrial complex. What can little Danny van Leeuwen hope to accomplish? My goal in accepting this appointment is to find one lever that can move the Value-Based Measurement battleship three degrees toward value to people at the center of care. My superpower is to accept what is and go from there. After listening to my esteemed TEP colleagues, my perception of what is is:

  1. Measures serve to evaluate the performance of individual practitioners (not measure whether patients attain optimal health or how the team is functioning),
  2. Inertia is heading to further measure specificity by specialty and diagnosis (not toward the patient with more non-medical than medical determinants of health who is more than a sum of their diagnoses),
  3. Data for measurement exists primarily in claims, diagnostic systems, and Electronic Medical Records (much less patient-generated data and experience/perceptions of people at the center of care),
  4. Physicians bristle at the idea of being held accountable for anything they deem out of their control (rather than what can I do to contribute to improving whatever?),
  5. People at the center of care, insurers, and policymakers all feel ill at ease with uncertainty,
  6. Few, if any, incentives exist for data vendors to integrate their data (So patients, caregivers, and parents using the most health care dollars provide the bulk of communication at transitions in care, if they can do it at all),
  7. Testing measures in real-life seems to be an almost insurmountable challenge (so the link between measures and what they seek to measure and the link between measurement and value to patients is tenuous),
  8. Direct care clinicians are stressed and burning out – the proportion of time they spent documenting rather than caring is growing while they feel pressure to increase productivity (rather than technology helping to reverse those trends),

Jeesh. Houston, we have a problem. Read More

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

Superpower: Opening our hearts

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader, Musician | 5 Comments

I’m scared but not shocked. The level of disappointment so many people feel about their lives profoundly saddens me. I should have more. I would have more if it weren’t for others – all sorts of others. Feelings of injustice can power so much. I don’t pretend to understand all the righteousness, anger, and meanness that erupt when disappointment builds. But it feels as familiar as the human condition throughout the planet and over the ages. It’s like earthquakes from fracking.  I’m thankful that my mother, a Holocaust survivor, is no longer alive. She would be apoplectic and inconsolable.  What’s going to happen now? How should I act? As when grieving, I will mindfully minimize controllable stress – exercise, rest, listen to and play more music, spend more time with friends and family. I will continue to give thanks for all I have in my first world life. I will continue to pursue my passion for maximizing the experience of people at the center of care. I pray for the physical and spiritual strength to speak up, stand up, and act when the moments seems right. I’ll need strength to take the high road in this low road time. More than anything I’ll pray for unexpected open hearts. The community needs it. Our grandchildren need it.  The unborn need it. Onward.

Belonging – a matter of perception

By | Caregiver, Consumer, ePatient, Family man | One Comment
During the inevitable ups and downs of life, I feel better when I belong. The pointy end of illness, loss, unintended change, stress, can be softened by belonging. Belonging to a family, team, community. What is this feeling of belonging? Being with family, comrades, teammates, cronies, neighbors. My wife and I are visiting old friends.  Old friends know the good, the bad,and the ugly and still like you and want to be with you. They have been with you through it all. Hence, old friends. Our neighbors look out for us, they have our back, literally. We belong. Belonging fuels a positive narrative that empowers me. I can take risks, I can survive mistakes, I can recover, I can feel better, I can find some peace when I belong.
Belonging feeds itself. To belong, I need to be a family member, a teammate, a neighbor. It’s an investment with some risk and some return. Belonging has an open heart. Paradoxically, an open heart is risky with the possibility of huge return and huge hurt. Yet a better risk than Powerball.  Turning a negative narrative into a positive narrative increases belonging – it’s a superpower. It’s a matter of perception. It’s a magic lever of best health.

Giving Thanks

By | Advocate, Caregiver, Consumer, ePatient, Family man | One Comment
My super power is accepting what is. Doesn’t mean I settle for what is. After all I’m a catalyst for change. Accepting and appreciating what is makes for a solid foundation and a realistic start. I can’t get from here to there if I don’t know – and value – where here is. I give thanks for my super power. I didn’t do anything to get this super power. No degree for it, no lightening strike – I was born with it – lucky genes and family history, felt safe growing up. I give thanks for (value) clean drinkable tap water, regular garbage pick-up, laden grocery shelves, the sun shining as often as it does. I give thanks for my sons, their wives, my grandkids, my extended family, my home life, my inspiring co-workers, my health and especially, my honey. I give thanks for the health problems our system has – I don’t live in a refugee camp outside Syria.

I give thanks, for you, my loyal readers.  I look forward to this virtual community every week that welcomes my musing on the magic levers of best health. Happy Thanksgiving!

Book review: Far from the Tree

By | Advocate, Caregiver, ePatient, Family man | No Comments

Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity covers stories of diverse caregiver experience; parents with exceptional children: children with deafness, dwarfism, Downs syndrome, autism, schizophrenia, or disability. Others are caring for children who are prodigies, transgender, conceived from rape, or committing crimes. It is a rich and exhausting tome (962 pages) — profoundly sad, exhilarating, and inspiring. Solomon interviews more than 300 families navigating a journey they didn’t choose, caring for their children, facing unexpected challenges. What can those of us committed to participatory medicine learn from their experience?

More? See the full review here in the Journal for Participatory Medicine
van Leeuwen D. Book review: Far From the Tree. J Participat Med. 2013 Feb 18; 5:e8.

A new threshold – laid off

By | Caregiver, Consumer, ePatient, Leader | 9 Comments

As you were recently informed, due to the need to reduce operating costs, the Hospital is required to eliminate positions. Unfortunately, your position is one of those affected by this difficult decision.

A definite threshold in a health journey. Going through the stages of grief exiting one space and excited by new prospects as I enter the next. This is where some earlier posts on my blog come in: ResiliencySuperpowersRest, Improvisation.
What have I learned these past few weeks about the industry? Frantic rush to merge, expand, and cut expenses – dynamic tension between these simultaneous imperatives. A few organizations are well poised to consider, now what – many are not. The challenges of creating systemness and alignment from diverse cultures and entities, always endemic in health care, are now more pressing. Rapid, intense change causes teams within organizations to constrict, contract, protect. Leaders can leverage this stressful opportunity to create alignment by focusing on the patient, providers, and staff experience. Who can disagree with this beacon? Focusing on patient experience across the continuum of care is intrinsically rewarding – spiritually healing – and makes business sense because positive experience prevents leakage and increases loyalty. Clinicians are critical – they understand healing. Leaders need their help applying their craft to organizational health. Their jobs are harder, they need superpowers more than ever. They know where the system is weak and wasteful, just look at their workarounds – pearls  for change. Patients want their journey to be simpler and kinder – it’s far cheaper and more effective to anticipate their needs rather react to their dissatisfaction. Everywhere we find relationships requiring information and communication – patients, caregivers, providers, staff, leaders. Automate that sharing of information – bidirectional where possible.
I need to rest and heal to prepare for the intensely exciting new vistas ahead. I have worked my whole career to be ready for this moment. Be still my heart.