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Danny

Failure is Under-Rated

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

I’ve told my teams over the years, if we don’t fail several times a week we’re not pushing the envelope and not doing our jobs. We weren’t tightrope walkers, pushing IV meds, or manufacturing artificial joints. We were innovators, learners, and leaders. Failure as a virtue is a hard sell – to almost anyone. My teams, my colleagues in leadership, editorial review boards always start by thinking I’m crazy.  Sometimes they eventually get it, sometimes not. Leadership usually wants to get A’s. In one health system I worked for, I reported that we successfully completed medication reconciliation in 40% of admissions. OMG, that’s awful! They said.  No, I said, that’s great! We’re failing. Let’s succeed. In 18 months we completed medication reconciliation 70% of the time.  It’s a lot harder to go from 70% to 80% than 40% to 70%. In research, we don’t publish when the study doesn’t prove the hypothesis. Yet, not proving is as important, if not more important, than proving. I was on an Editorial Review Board once that decided to solicit articles where the hypothesis wasn’t proven and something was learned. Over a 10-year span, we solicited exactly 0 such articles. Zero!

A definition of failure to some is the opposite of success. Not necessarily. Especially when it comes to learning and getting healthier. We don’t tell kids they fail when they fall learning to walk. They keep trying.  Same with learning to talk. As an adult, I find failure a motivator to try again.  As a thinker and a catalyst for change, I’m delighted when I succeed with 30% of what I try. It’s been the rare boss that’s accepted that. They’ve been the best bosses and we’ve done the best work together in my career.

For health, embrace failure. I did eye exercises twice a day for 8 months before my brain rewired and my crippling double vision cleared 80%. That’s 360 failures and one success! It’s taken years of trial and error to land on a balance, stretching, and strengthening routine that works for me. I stumble a lot, fall infrequently, and sustain only minor injuries when I do. I get frustrated when I see failure and stuck in the muck. Fail and try something else, that’s the ticket.

Failure flavors humility and empathy.  My best stories are of failure – my failures. People laugh with me.  We can all relate to failure. It’s the warp of our lives. Hearing about a failure, we naturally ask, and then? What happened next?  What did you learn? What did you try? What eventually worked?

So, failure, persistence, and humor are inseparable cronies. Keep trying and chuckle at the absurdity. That‘s life, health, music – anything worth doing well.  Persist and laugh. Eventually, who knows?

Photo by Nik MacMillan on Unsplash

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Appreciating Empowerment

By | Clinician, ePatient, Family man | One Comment

My wife and I spent some time trying to adopt a teenager after our son, Mike, died. We chose the adoption agency because, with them, the child made the decision whether or not to be adopted by us. The teen with whom we developed a relationship decided not to be adopted by us. Hard for us, but success for her! Empowered adoption. The clowns of Laughter League at Boston Children’s Hospital poke their heads in the room, May we come in? When the child says, No, you can’t come in my room, it’s success! Empowered hospitalization. Katherine Treiman at RTI shared an article with me about self-dialysis, Is “Empowered Dialysis” the Key to Better Outcomes? People connect themselves to their machines, draw their own blood, clean up the dialysis equipment themselves. More training time, lower mortality rates. Empowered dialysis, empowered hospitalization, empowered adoption. Wow. Radical. Controlling our own lives. A person, not a patient. What a thought.  I know the fatigue and stress when I feel powerless. My MS symptoms are much worse. I feel better when I’m in control. What I really like about empowered decision-making is that it doesn’t matter what decision is made. The physical, mental and spiritual benefits of empowered decision-making and care may be tough to measure. Is that because we don’t measure it or because we don’t know how to measure it? Still, we should practice it, appreciate it’s wonder, and learn to measure it.

Photo by chuttersnap on Unsplash

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WHAT RESEMBLES THE GRAVE BUT ISN’T

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

Photo by Lily Lvnatikk on Unsplash

Apologies for the duplicate post. I changed hosts and lost this post in the migration.

My friend and story-teller, Susan Spivack, sent me this poem. Really spoke to me. I may be pathologically optimistic and live in a comforting, safe, privileged bubble, but I allow myself moments of despair, feeling sorry for myself, and overwhelmed with the pain I feel around me. Doesn’t this say it beautifully?!

WHAT RESEMBLES THE GRAVE BUT ISN’T

Always falling into a hole, then saying “ok, this is not your grave, get out of this hole,” getting out of the hole which is not the grave, falling into a hole again, saying “ok, this is also not your grave, get out of this hole,” getting out of that hole, falling into another one; sometimes falling into a hole within a hole, or many holes within holes, getting out of them one after the other, then falling again, saying “this is not your grave, get out of the hole”; sometimes being pushed, saying “you can not push me into this hole, it is not my grave,” and getting out defiantly, then falling into a hole again without any pushing; sometimes falling into a set of holes whose structures are predictable, ideological, and long dug, often falling into this set of structural and impersonal holes; sometimes falling into holes with other people, with other people, saying “this is not our mass grave, get out of this hole,” all together getting out of the hole together, hands and legs and arms and human ladders of each other to get out of the hole that is not the mass grave but that will only be gotten out of together; sometimes the willful-falling into a hole which is not the grave because it is easier than not falling into a hole really, but then once in it, realizing it is not the grave, getting out of the hole eventually; sometimes falling into a hole and languishing there for days, weeks, months, years, because while not the grave very difficult, still, to climb out of and you know after this hole there’s just another and another; sometimes surveying the landscape of holes and wishing for a high quality final hole; sometimes thinking of who has fallen into holes which are not graves but might be better if they were; sometimes too ardently contemplating the final hole while trying to avoid the provisional ones; sometimes dutifully falling and getting out, with perfect fortitude, saying “look at the skill and spirit with which I rise from that which resembles the grave but isn’t!”

~Anne Boyer, “This project was co-curated by the journalism nonprofit the Economic Hardship Reporting Project and its Puffin Story Innovation Fund.”  ~https://billmoyers.com/story/poetry-month-what-resembles-the-grave-but-isnt/

Eulogy

My Aunt Kato (Kikke) Pomer (van Leeuwen) passed away this week at age 101.  Kikke was a Freudian psychiatrist who began medical school in the Netherlands just before the Nazis invaded. She and her family escaped to the United States, She couldn’t gain admittance to medical school here because she was a woman, a Jew, and a refugee.  A family friend suggested that she meet Albert Einstein and ask him for a reference. She did and he did.  She graduated from Johns Hopkins Medical School and practiced in LA into her 90’s. Aunt Kikke inspired and encouraged me in nursing, advocacy, and in life. I’ll miss you.

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Lessons Learned as a Patient-Caregiver Activist

By | Advocate | 3 Comments

Photo by Monica Melton on Unsplash

Patient-caregiver activism spans my 40+ year career and my many hats. As the first male public health nurse in Western Massachusetts in 1976, I established a walking route in inner-city Holyoke with the Holyoke Visiting Nurses Association.  I strove to immerse myself in the community of people I supported. This more profound understanding of their physical environment and social circumstances help me help them manage their chronic illness – diabetes, heart failure, spinal cord trauma, and strokes. As an Intensive Care Unit nurse manager in the 80’s I introduced open visiting hours for families. Up to this point visiting hours were from 1-2 p.m. and 6-9 p.m. Nursing staff felt that family would be in the way.  So, on the one hand, my nursing staff would say with pride, we are patient advocates, and then limit family access to their loved ones. Made no sense to me. Working as Director of Quality Management in behavioral health managed care in the early 90’s, I was able to form clinician and patient advisory councils to inform us on the effects of our policies and practices on clinician and member lives.   When my son, Mike, was recovering from brain and then lung surgery from metastatic melanoma, we realized as a family that recovery depended on us with little support from the hospitals or medical community. I still had never heard of patient-centered or patient engagement.

Now, I am retired – no longer an employee or a boss – and immersed in writing, speaking, and consulting as a patient-caregiver activist. I collaborate with clinicians, researchers, academics, policy makers, caregivers, entrepreneurs, designers, programmers, administrators. I have the opportunity now to reflect on the lessons I’ve learned about the craft of patient-caregiver activism as a catalyst for change. Let me share some of those lessons:

Activism includes a set of skills and attitudes

  • Know my audience(s). Absorb like a sponge, introduce them to each other, and be a guest in their house(s).
  • Clarify language. Use as plain language as possible. Learn my audiences’ language. Delight in the Tower of Babel puzzle.
  • Build team relationships and hold up my end of the bargain. Maximize trust.
  • Find the story that opens minds and hearts to science and mission – people have different brains and respond to  information differently
  • Find seats at the table for the customers: patients, caregivers, and direct care clinicians.
  • Be clear about how I’ll recognize success in my work and the team’s.
  • Take three deep breaths often and keep at it. Relax and persist.
  • Don’t be afraid to blow the whistle for ethics. If I don’t speak up, who will?
  • Go for big gains and value the small ones. Celebrate often.
  • My family and self-care first.
  • Practice humor, humility, and listening.
  • Mentor as I’ve been mentored.
  • Appreciate that it’s all an experiment.  There is yet another way.

What lessons have you learned? Scroll down to bottom of the page to share.

 

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Passover

By | Advocate, Family man | One Comment

My pathological optimism is under assault. How do I live with myself as a privileged white man? How do I continue my advocacy as a patient activist? This week I listened to Terry Gross speak with Maya Dusenbery on Fresh Air about her book, Doing Harm, The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. I listened to Amy Chua speak about her book Political Tribes: Group Instinct and the Fate of Nations on the Lawfare Podcast. I watched Samantha Bee on Full Frontal talking about women, history, and the treatment of pain. The wind has been sucked out of my sails.  I may style myself a feminist, but the country, the healthcare system, medical research and the breaks are designed for me. I certainly have my challenges, but they are minimal compared to those outside my shrinking white man minority tribe.

I care about learning what works for people – groups and individuals – as they strive for best health. Yet most historical evidence – research – has been designed for white men, not women, not refugees, not people with limited means and power. It makes me crazy. What is wrong with us? Plus, our nation seems to increasingly petty, mean, shortsighted, and self-interested.

OK, white boy, get over it. I once got myself in trouble at diversity training. I said, My father was gay, my parents were holocaust survivors and refugees, my brother and sister are of mixed race, and I’m a man in a female dominant field – nursing. And now I’m disabled.  My prejudices aren’t about gender, religion, race, disability.  I’m prejudiced against thoughtless people. I was not appreciated.

Anyway, nothing has changed from before this week and now. The world is still crazy. I live in a racist, misogynistic, mean-spirited country. Thankfully, there are tribes of people trying to do the right thing. I can’t afford to lose my pathological optimism.  I’m still working more and more on advocacy about making collaborative health choices (informed decision-making) with my health team based on science and my environment, circumstances, and values. Treating health choices as a grand experiment is still a sound approach. Try stuff, see if it works. If it doesn’t, adjust. I am so heartened by the March for Our Lives initiatives. Activated young people are our hope and our future.

It’s Passover, time to celebrate liberation. Liberation is not a destination, it’s the journey.

Thanks for listening to me rant. Good to be on this journey with you. We have work to do.

Thoughts on Liberation

Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred.  Martin Luther King Jr.

I did nothing but international liberation politics for ten years, and usually it was like, you gain an inch, you lose a half an inch. It’s slow going, man. Steven Van Zandt

If you’ve got nothing to dance about, find a reason to sing. Melody Carstairs

On the road to liberation, learn to press Next. Even if there is no such an option. Talismanist Giebra

I am the bended, but not broken. I am the power of the thunderstorm. I am the beauty in the beast. I am the strength in weakness. I am the confidence in the midst of doubt. I am Her! Kierra C.T. Banks

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Activated patient, nurse, with engaged doctors. Can’t reliably manage meds?!

By | Caregiver, Clinician, ePatient | No Comments

My medication lists don’t match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I’m taking while looking at the screen, making changes. I say I don’t take that anymore. That one’s as needed, but I haven’t taken it since my last relapse. That was stopped years ago and taken off twice before, etc. The doctor reviews the resulting list.  When I check the portal after the visit, some changes aren’t reflected. Other offices print out a list and ask me to write changes and return the list.   The lists don’t reflect the changes I made last time. No surprise – the portals don’t reflect any of the changes. Another asks me while looking at the EHR, this compounded medication isn’t on our list, we’ll leave the non-compounded version (a doctor in their system prescribed the change and directed me to a pharmacy to have it filled). One doesn’t allow my twice-a-year infusion to be listed as such (only allows the number of times a day). I have a moderately simple medication regime taking 4-5 prescribed pills and salves, twice-a-year infusions, plus 3-4 over the counter medications with three as-needed (PRN) meds. I use two local pharmacies, a mail-order pharmacy, and a compounding pharmacy, depending on which has the lowest out-of-pocket cost. I’ve never had an inpatient hospitalization. Read More

It’s not so simple – making treatment choices

By | Advocate, Caregiver, Clinician, ePatient | No Comments

We (patients and clinicians) need all the help we can get making informed health care decisions. We need the right information to the right person, in the right format, through the right channel, at the right time in our life flow and workflow – The five rights. Let’s take managing acute pain as an example. Clearly, we need to make some decisions together. I (the patient) am in pain for whatever reason – hurt my back, migraines, colitis, sickle cell, a million reasons. I (the clinician) need to help my patient manage that pain with the least long-term risk possible, e.g. relief with maximum function without addiction, constipation, confusion, whatever. This pain could be new – never had it before, or familiar – chronic (we have experience with what works and what doesn’t). Clinical decision support can help us to structure and inform a routine to make choices based on research and clinical and life experience. What has worked for groups of people (those with acute back pain, migraines, colitis, sickle cell) and what has worked for the individual (me or my patient)? We can welcome this decision support when symptoms first occur, when the patient and clinician first communicate, when they first meet about the symptoms, or as we try treatments until the pain goes away or is manageable – anytime from first pain to living with pain to no pain. Read More

You 2.0 – Branding

By | Advocate, Caregiver, ePatient | No Comments

Opa, what do you do? I’m a patient activist. What’s an activist? An activist is someone who advocates for social change. What’s an advocate? An advocate is a champion. When I write, speak, and talk with people about health, I’m advocating. What’s social change? Social change is a better life for people. I think people – including you – have the right and the responsibility to be as healthy as they can be. I call this best health. I’m a champion for best health. Why do you call yourself Health Hats? I wear many different hats: I’m an Opa, a patient, a caregiver, a nurse, an informaticist, a leader.  I wear lots of hats.  You do like hats, don’t you?! Yes, I do. And it’s recognizable. When people hear Health Hats, they think of me. People often ask me, Why Health Hats? It’s a great conversation starter. Read More

Trust

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

I trust my primary care doc.  I trust my neurologist. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me.  That certainly doesn’t mean that we don’t question almost everything each other says. Trust is not blind faith. Trust is NOT no second opinions. Trust is for when I’m in a crisis and I can’t think clearly, I will listen to my immediate family and my two lead docs (in that order) and I’m likely to do what they recommend… unless I’m unsure. Trust is for when I need to make a decision but can’t or don’t want to. And these are all people’s opinions about what I should do with my life. I know I should lose weight. People I trust say I should lose weight.  It takes a certain alignment of the stars for me to lose weight. I lost 30 pounds eight years ago when the stars were in alignment. They were in alignment again three weeks ago. I’ve started to lose the same 30 pounds again.

I’ve questioned my primary care doc about taking cholesterol-lowering meds.  She wants me to take them. I’m not so sure. The evidence appears pretty clear. I’ve been taking them for nine years because I trust her. Now with Medicare, they’re going to cost me more. It has me thinking again.  I still trust her.  I’ve stopped taking them.

I trusted my doctors for twenty-five years as they worked me up, over and over, for cardiac issues.  Now I know I have multiple sclerosis, not heart disease. I’m a trusting fellow until I’m not.

A friend of mine had breast cancer. She asked her doctors, “Should I take chemo?” They all said yes. She trusted that they wanted the best for her, but wondered where their trust in that advice came from? Was their research current, reliable, and apply to her as an individual? She did the chemo.

Webster says, Trust = you can rely on the integrity, strength, or ability of a person or thing. Trust is respect + communication + context. Making choices about your health in a bed of trust is hard enough. Making choices in the swamp of distrust can be crazy making.

As a person, I try to build trust – in relationships. It starts with being trustworthy. I feel better in that bed of trust. Still, trust in myself, ourselves, is key. Ultimately, it’s our lives.  We face the consequences of our decisions. I’m greatly relieved that I trust I can adjust and make a different choice if the one I made didn’t work out. Trust.

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Reading the Room and Yourself

By | Advocate, Caregiver | No Comments

Sometimes I feel like I’m part of someone else’s play. Just dropped in. I don’t know my lines, I don’t know the other characters. I think I’m in a drama, yet it feels like a farce. The stage is ever changing. Have you seen those round, rotating stages where the props keep changing? I think I’m playing myself, but I’m not quite sure. On top of it, I feel like crap, I’m exhausted, I’m cranky. I exit, stage right, left, whichever. What just happened? What do I do now? Oh yes, time to live life again.

When I worked at Boston Children’s Hospital, I took a class from the Big Apple Circus clowns. These are people who go from room to room visiting kids and their parents or go to scary procedures with them and help them feel better for a couple of minutes. The class was on reading the room. Sizing up the characters, the dynamic, the vibe in the room and then selecting a path forward. The kid is hurt, angry, and withdrawn. There’s tension between the hovering adults. What can you do? In seconds they insert themselves, do something odd or funny, draw out the child, and break the tension. Read More