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end-of-life Archives - Danny van Leeuwen Health Hats

Receiving with Reckless Abandon

By | Caregiver, Clinician, Family man | No Comments

My boy, Mike, died 15 years ago today (sigh). Here’s a link to a video of an interview with Mike 4 months before he died. (11 minutes).

This anniversary and attending the National Caregiving Conference last week made me think about being a caree, someone who is being cared for. My grandmother, my mother, and Mike were carees. Mike accepted his mortality but didn’t want someone to have to wipe his butt. That was a point too far. As a Holocaust survivor, my mother craved being cared for all her life, yet was deeply ambivalent until her last days. She fought for control and felt deep gratitude for a warm, kind hand. My grandmother wanted more care than she needed (in my opinion, not hers). I mostly sensed fear. I’m only just tasting being a caree. Read More

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

Health Goals to Clinical Decisions (CDS)

By | Caregiver, Clinician, ePatient, Researcher | 2 Comments

It’s hard to reach personal health goals or solve medical problems without a plan.  Plans require decisions. Never-ending decisions (choices) in the health journey. Clinicians, researchers, and insurance companies study and use Clinical Decision Support (CDS) to help with the decision-making process. It’s a shortcut for using research (evidence) in the decision-making. Some talk about patient-centered decision support (see a definition at the bottom of this post). They’re trying to figure out how to help people to make decisions in two minutes of ten-minute visits. Yet, few patients or caregivers I’ve met ever talk about CDS.  So how can people understand the value and limitations of CDS? Read More

Penny Whistle for Father

By | Family man, Musician | 2 Comments

Who knew he loved penny whistles?  The pianist who accompanied his cello-playing friend on piano for years told a story yesterday at his funeral. At Christmas last year, this father who I knew as awkward, serious, unemotional, religious, conservative, classical music-loving, got the church choir penny whistles and led them in a performance of Good King Wenceslaus. While the story was told, the priest pulled a penny whistle out from the pulpit and tweeted a few notes.  “It’s there to keep me humble.”

I consider myself a good read of people. 50-75% of the time I’m spot on (That’s 25-50% spot off).  It leads me to an occasional empathy-challenged state. A penny whistle can tip the balance.

Happy Father’s Day all you fathers.  I love the father in my sons. Here’s to you, Cliff, a faithful reader of this blog. You’ll be missed!

Coalition for Compassionate Care of California

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


I attended the Coalition for Compassionate Care of California Conference (#CCCC17) in Sacramento this week as an ePatient Scholar. Exhilarating, informative, warm, curious, inspiring, and tiring. I hoped to leave with one novel (for me) insight into palliative care; hear patient, caregiver, and clinician stories about their experiences; to hear how clinicians receive education about end-of-life conversations; to add to my network of patient/caregiver experts; and leave with a sharper focus for my #careplanning work. Amazing! I accomplished all five. I hoped to accomplish three of five (I habitually set myself up to exceed expectations). Read More

Community Rocks

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

I’m preparing to attend a California Compassionate Care Coalition palliative care conference #cccc17 in a week. I’m reminded of the power of community in advancing good health practices. I have two stories. The first is about the ongoing public health collaboration since 1993 in LaCrosse, WI to meet and sustain very high rates of advanced care planning and following documented preferences through end of life.  A group of people organized a region-wide initiative to elicit, understand, document, and honor a patient’s preferences about future medical care. As a result end of life preferences are a regular part of community conversation, documents became easier to understand and use, some electronic medical records facilitated access to choices, and following the choices became standard practice. In 2010 90% has a plan, 99% were available in the medical record, and 99.5% of the time treatment was consistent with preferences. (See the Journal of American Geriatrics Society).  Amazing! Read More

Interview: Danny on Urgent Care Radio

By | Clinician, ePatient, Family man, Informaticist, Leader, Uncategorized | No Comments

As many of you already know, on January 7, 2017, Minda Wilson interviewed me on the URGENT CARE radio show. Here’s a link to the episode. I recommend the show, URGENT CARE. Many good interviews of caregivers, patients, clinicians, and policy experts. Minda, a health care attorney, knows her stuff. URGENT CARE is one of many shows on Radioactive Broadcasting. Let me know what you think of the interview!

For those interested, here’s  my full 2016 Annual Report

Download (DOCX, 222KB)

. Read it to know what I’ve been up to in this 2016 transition year. I’m grateful to all of you!

Decisions, Decisions, Decisions

By | Advocate, Caregiver, ePatient, Family man, Leader, Musician, Researcher | 2 Comments

Decisions, decisions, decisions. We face endless numbers of decisions during our health journeys. From the mundane, should I fast to lose weight? To the tedious, what statin should I take? To the heartbreak, should we do everything possible? Yesterday, after playing music, someone told us that he fasted to lose 20 pounds. How many weight loss discussions have we had in an endless number of settings. I can remember one time discussing it with my Primary Care doctor – no decision, no choice of action – just an observation that my weight had been steadily increasing over the years. My cholesterol is high, and my Dad died young of a heart attack (not from high cholesterol). I’ve taken six different statins. My Primary Care doc thinks the evidence is strong for me to take statins. We regularly change brand based on effects on my liver enzymes, cost, and insurance coverage.  A friend’s elder mother had major heart surgery. The cardiac surgeon reported success, she’s doing great – the blockage was successfully removed. She’s still in a coma, intubated. She’s never had end-of-life conversations, no advanced directives. Her husband will want to do everything possible. No decisions lead to a decision. Read More

Giving Thanks

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

thanksI’m thankful for my 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

I Wasn’t Born with a Tattoo, Telling Me How Long I Have to Live

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader | 9 Comments

10p New Year’s night 2002: Mike called me. I’m numb on my right side. My heart screamed. My boy had a stage 4 melano2012-05-17-mike-porchma removed from his neck a year ago followed by lymph node removal and a course of Interferon. Go to the Emergency Department. The next day a metastasized brain tumor the size of a grape was removed. Soon he had a lung tumor the size of an orange removed. He called them Terrence (the brain tumor) and Caesar (the lung tumor). Once sufficiently recovered from the surgeries, he began treatment at the cancer center close to his college home. A team of me, my wife and the parents of his girlfriend (who lived near their college home) alternated accompanying Mike on his visits to the cancer center. Mike never felt that he had the information he needed.  They wouldn’t talk prognosis: Am I going to die?  They didn’t explain uncertainty: What does 5% chance of anything mean? I’m 26! They seemed to speak to us more than him. After a particularly frustrating session with the oncologist, I asked him if I could arranged a consultation in the cancer center near us. He agreed. I did. What a difference. Mike immediately bonded with the radiation oncologist. Let me speak with Mike alone. After an hour, Mike came out. I’m probably going to die, but there’s stuff we can try. Oh well, I wasn’t born with a tattoo on my ass telling me how long I had to live. He died November 18th, 2002. Read More