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Learning What Works

Learning What Works

By | Caregiver, ePatient, Researcher | One Comment

One of my passions in life is Learning What Works for people on their health journey. As we travel, we make choices – endless choices.  Should I do A rather than B? Eat the brownie or don’t eat the brownie? Take a walk or don’t? Go to the doctor or wait until I feel worse? Fill the prescription the doctor wrote or don’t? Have surgery or wait and see? Stay home with my dad with dementia or arrange for home care? Or we make no decision at all (a decision in itself). Sometimes people search for help in making these choices. Help from professionals on their care team, from their care partner, from Dr. Google, from their mates or social network.

Learning what works is an experiment.

A person tries something – it worked or it didn’t – for them. To know it worked means that the person has an idea of what they are trying to accomplish (See my post on personal health goals). And that they think there’s a relationship between what they tried and what they accomplished (or didn’t). I have a fever, took an aspirin, and the fever dropped. I have heartburn, stopped eating chocolate, and now less heartburn. My MS symptoms are getting worse. I reduce manageable stress. My symptoms subside. What’s important in all this is that I know what I want, I try something, and I feel better or accomplish what I wanted (or didn’t). Some people, like me, have a written care plan and keep track with lists and spreadsheets. (See my post on planning personal care)  Most don’t. Read More

100th Birthday

By | Advocate, Family man | 10 Comments

We celebrated a 100th birthday around my Aunt Kikke, born during WWI in the Netherlands. She interrupted medical school and then emigrated to the US when the Nazi’s invaded.  She couldn’t get into medical school here because she was a refugee, a woman, and a Jew. She was finally accepted to Johns Hopkins Medical School on Albert Einstein’s recommendation. Yes, that Albert Einstein. Aunt Kikke, Kato van Leeuwen, practiced as a psychoanalyst through her 90’s. The US has thrived throughout its history from the inspirational careers of refugees and immigrants such as my Aunt.

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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!

Bad experience? Now what?

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

I read a post this week on the Society of Participatory Medicine’s blog about a nightmare attempt to obtain medical appointments as new patients. You’ve faced the poor listening skills, conflicting information about the availability of appointments, lack of sharing information about you within the clinic or insurance company, poor or no follow-up, waiting, waiting, waiting, that the author describes.

I’ve dealt with it, too, as a patient, caregiver, clinician, and quality management leader. So, how do health care clinics and insurance companies know about the challenges their patients/customers live through? The most common is through surveys. Surveys are blunt (not sharp) and fairly useless. Most health plans require clinics to administer the CGAHPS Clinician and Group Survey. Three questions on the survey include:

  1. Patient got appointment for urgent care as soon as needed
  2. Patient got appointment for non-urgent care as soon as needed
  3. Patient got answer to medical question the same day he/she contacted provider’s office

You can answer Never, Sometimes, Usually, Always.

Most health plans survey patients about health plan service:

  1. In the last 12 months, when you needed care right away, how often did you get care as soon as you needed?
  2. In the last 12 months, how often did you get an appointment for a check-up or routine care at a doctor’s office or clinic as soon as you needed?
  3. In the last 12 months, how often was it easy to get the care, tests, or treatment you needed?

See, not very informative. A score might be more than 80% of patients say Usually or Always? That could mean that 19 of 100 people responding are unhappy with their experience. Wow. How can anything be changed based on that result? Read More

Precision Prism

By | Advocate, Caregiver, ePatient, Informaticist, Researcher | 2 Comments

I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Read More

Disabled. Looking for Work. Reference

By | Advocate, Consumer, ePatient, Family man | One Comment

Here’s the reference I didn’t accept on LinkedIn:

He’s seriously annoyed with his disability, full of himself and his opinions and perceptions about life and health. Blogs every week whether or not he has anything to say. Can’t keep a job.  Has the attention span of a gnat, flitting from one thing to another. Needs significant help focusing and limiting the scope of his work. Moves way too fast, going for the latest shiny thing, tested, proven, or not. A major joiner. Set some limits for Pete’s sake. Sits on expert panels without real expertise in anything. Has to keep lists of books he’s read so he doesn’t read them again, but forgets to check his list. We’ve always done it this way is a red flag for him. He should shut up and listen for a change. Has a loose relationship with the truth. Would rather tell a good story. Needs a fact checker. Loves to say, God willing and the creek don’t rise. Where does he think he is? W Virginia?

OK, he’s sort of disabled. Takes advantage of his get-out-of-jail free handicapped parking placard. After all, he can walk a couple of blocks.   Frantically trying to stay healthy. Massage, acupuncture, chiropractic, counseling, meditation. Give it a rest already. Cut his foot with a chain saw when he was an ED nurse and paramedic. Then he went to his son’s second grade class to teach first aid  Doesn’t know the meaning of safety. A truly strange bird. Was in the movie, Woodstock, when he was 17, calling his mother. Now 63, he’s still a momma’s boy. Was in a Life magazine cover story, You’ve Come a Long Way, Buddy. Men’s Liberation. For real? Can’t lie to save his soul. Don’t know about diversity, he’s prejudiced against stupid people who can’t get anything done. Can’t stop talking about his grandkids. He’s a boring Johnny one-note. Thinks he can play saxophone.  Please!  Loves to dance – in his head. Who is he fooling? Pokémon illiterate. Just ask his grandson. Does laundry and takes out the garbage, but doesn’t cook enough. Leaves the entry way door open when it’s freezing outside.  Appreciates clean running water and weekly garbage pickup. Every week! Give it a rest already. Built a house with his wife without ever having built anything before. Lord, get some experience before you go off halfcocked. Won’t stop correcting lab technicians who ask him to confirm his birthdate that they read to him. Arrogant.  Still hot for the same woman after 40 years – get a life. Balding, needs a hat. Any hat, doesn’t care.

 

I know it’s tough to get a job as a disabled person.  But, hire this guy? Be very careful, count to 10.

What’s Pokeman Got to Do With It?

By | Advocate, Caregiver, Clinician, ePatient, Family man, Informaticist, Leader, Researcher | One Comment

I went to a meeting in Chinatown attended by parents with children on the autism spectrum going to Boston Public Schools. The attendees spoke Mandarin, Cantonese, Vietnamese, English and Bureaucrat-ese. The parents helped each other advocate for services for their kids. Most only spoke one of those languages. After 2-3 minutes of speaking in one language someone would raise their hand and there was cross translation by the 2 or 3 people who spoke more than one language.  This repeated for about an hour.  I went home and my 7 year old grandson tried to teach me to play Pokémon.  I understood less than I did in Chinatown.  Opa, you don’t understand this at all!! Read More

Finally, narratives at the end

By | Caregiver, Family man | 6 Comments

Spread the rest of Mom’s ashes with my Dad’s in Grosse Pointe, MI, joined by some dear friends. He was her soul mate. They died 43 years apart. As she would have said, it was a great party. too bad I couldn’t be there. My narrative about my mom is still quite fluid. Sometimes she’s amazing, loving, and engaged – all in. A pathologically optimistic survivor. Other times a reluctant, troubled, somewhat abusive mother. At the end she was a hoot  — and the stories follow. Mostly, I think how alike we are. I’m loving, amazing, troubled, optimistic and a hoot. Narratives are coloring books with pages of the same outline, colored with different crayons, paints, markers, within the lines, outside the lines. I’m alternately relieved and uncomfortable with the narrative of troubled mother. Sort of like the narrative of me as disabled rather than healthier than I’ve ever been (except for the MS). Troubled and disabled are true.  I just can’t live there for too long – 5 minutes as a time? I’m affected by other people’s narrative about me, especially negative ones. When I’m strong, my positive narrative trumps, when I’m weaker, the negative narratives wear me down.  What narratives do you have about yourself and those in your world? How do they affect you and them? Narratives are certainly magic levers of best health. Oh, ma, the narratives of you are spiced with love.  I miss them all.