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end-of-life | Danny van Leeuwen Health Hats - Part 2

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 [gview file=”https://www.health-hats.com/wp-content/uploads/2017/01/2016-Annual-Report.docx”]. 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

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

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

Pocket Therapy for #Caregivers

By | Advocate, Caregiver, ePatient, Family man | 4 Comments

My mom insisted on end-of-life care at home. At the same time she worried about being a burden to her family.  A few weeks before she died, when she once more lamented being a burden, I said, Mom you are a burden, get over it. We did. Thankfully, she laughed and accept it.

Elderly woman

Her husband wanted to die at home, but she couldn’t handle being a caregiver and put him in a nursing home. Fortunately, we could afford nursing home care for my step-dad and we could afford 24/7 care for my mom at home for her last month with family rotating in from the other coast. It was still exhausting for everyone. When my wife and I discuss end-of-life and I filled out paperwork about my wishes, I emphasize care at home.  Now I realize that is selfish.  I don’t want to burn my family out. The same burden my mother worried about. If they need to put me in a nursing home, I’ll deal with that.  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