There are 46 words for snow in Iceland. How many are there for physical pain in English? Googling synonyms: Suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness… I recall sitting with my mom when she was dying of pancreatic cancer, trying to understand what her pain felt like. Ma, is it sharp, dull, aching, constant, ebbing and flowing? The more descriptors I tried to come up with, the more frustrated she became with me. No words worked for her. Yet she tried to describe it to the hospice nurse or doctor without success. Granted, my mom was home bound and bedridden. She was past the place where function didn’t mattered. How does your pain affect your ability to socialize and work? The way I manage my annoying neurological pains is to get to know them intimately. Meditate on the pain. Sensation, location, travel, duration, what makes it better or worse…. It takes the edge off, helps me be less freaked out and I can manage with less medication. I find my professional team intrigued by my desire to describe it in such great detail. I’m a bit of a freak. Turns out that acupuncture and mindfulness help me enough with my short bursts of radiating neurological zapping down my limbs that I don’t need medication and my function isn’t disturbed. I recommend that you read Rosalind Joffe’s blog this week, Can You Talk About Your Chronic Pain? Read More
I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I see them way too often. 3-5 times a month and I’ve never been an inpatient. Professional contact is a drop in the pond of my health. The rest of the time (also known as my life) I set and track goals and habit changes. I have questions about my plans and treatments. I deal with changes in my life that affect my ability to do the work of habit change. I network and I research. I worry and I celebrate. I have tools to help me that are largely disconnected from my health team. I track steps with my iPhone, my diet with MyFitnessPal, the support communities of MyTreatment and PatientsLikeMe. I can communicate with some professionals via portals and can receive one way data via OpenNotes, also with some professionals. Read More
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 do people consider to be clinical data, when they’re not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like:
- What does feeling worse (or better) look like?
- What works for me when I’m in pain (or scared)?
- Where will I sleep tonight?
- Are my kids safe? Am I?
- Am I treated with respect?
- Do I understand what doctors and nurses say to me?
- Where do I go when I have a question or I forget what I’ve been told?
- How do I get food from the grocery store?
- How much can I afford out-of-pocket for my medicine?
- What are the most important things in my life, for my future, for my health?
- Can I live with this amount of pain or discomfort or indignity?
- Do I have access to a computer or a phone?
I am a patient, caregiver, and nurse – an advocate of shared decision-making (#SDM). My health team operates in a collaborative process that allows us to make health care decisions together, taking into account the best scientific evidence available, as well as my values and preferences. (See this site for more info.). Click here for my other posts about SDM. Yet SDM sometimes makes me feel agitated and disappointed. SDM is a floor, not a ceiling – necessary but not sufficient. Read More
I want to be a good leader of my healthcare team. How would I know? Such a swirl of activity. This week my ophthalmologist wanted to refer to me another ophthalmologist. She said she’d email her to introduce me, send over my records, and have her scheduler arrange the appointment. I’ll follow-up if I don’t hear from the scheduler in a week. My chiropractor wants to hear what the massage therapist and physical therapist recommends and aligns his plan with theirs. My neurology nurse practitioner called me to say that the insurance company won’t cover the brand name injection I’ve taken for years because there’s a new generic medication. She doesn’t think it’s been tested enough on people before FDA approval. Instead she will prescribe a different dose of the brand name drug instead that’s still covered. Is that OK with me?
My healthcare team is like no other team in my life – not like family, not like business teams. It feels like a team in the clouds. They never gather together as a team. If they communicate at all it’s through me, or emails and snail mail reports, or if they’re in the same system through the electronic health record. I can think of once in 7 years that any clinician spoke to each other directly: my primary care doc called the neurologist when I fell and sustained a concussion. My wife has attended a couple of doctor appointments with me when I was first diagnosed with MS. Several times a year a prescriber speaks with a pharmacy or medical supply company to clarify an order. My family likes to stay current about my treatments, risks, appointments, and stress. They talk with me and among themselves.
Who is my team? Me, my wife, my sons and their families, my sister, my doctors and their teams, other clinicians (massage therapist, chiropractor, acupuncturist, physical therapist, optometrist, optician, pharmacist), medical supply companies, insurance company. I’m fortunate. I’m a good e-patient and I’m a clinician myself. I’ve selected this team (except the insurance and pharmacy benefit companies). One of my best barometers of team effectiveness is usually how the team operates when the leader isn’t in the room. Do they work better when she’s present or absent? Do the team members treat each other with respect? Is communication open? Are they clear about accountability, do they meet their commitments? But in healthcare there are so many other factors and power dynamics between clinicians, office staff, caregivers, insurance companies, administrators. It’s crazy complex – like being Secretary General of your health team. I wonder what Ban Ki-moon would advise?
I’m attending an Entrepreneur’s Think Tank at the local Career Center and the Tech Sandbox in MA’s MetroWest region. I helped start something in 2012 called Pain Points in Healthcare Mini Unconference, now Healthcare Innovators. Each of these groups assembles people with bright ideas trying to set up a viable business. Often people with more passion than practical knowledge seeking to fill in their gaps. I am 63 years old, seasoned with energy, ideas, connections and yes – gaps. I’m older, good at what I do, and still in need of mentors and coaches. How else will I stay good at what I do? Searching for, finding, and offering mentoring is serious fun. Read More
How do I research presidential candidate views on healthcare? What if I google each candidate’s web site?
Donald Trump has a Positions page on reforming the VA Medical System. Much hyperbole, but he does say: Under a Trump Administration, all veterans eligible for VA health care can bring their veteran’s ID card to any doctor or care facility that accepts Medicare to get the care they need immediately.
Bernie Sanders has an issue pages for Fighting to Lower Prescription Drug Prices (allow Medicare to negotiate with drug companies, allow Americans to buy from Canada, require price and cost transparency, prohibit deals that keep generic drugs off the market, plus more). Elsewhere he has advocated for universal national health insurance. Bernie has the most substance. Read More
Last post of 2015. Reviewing the year in 51 blog posts, we discussed:
- Death and Dying
- Give Me My Dam Data
- Work/Life balance
- Ignorance, Uncertainty, Research
- Experience of People at the Center
- And more
I’m looking forward to the adventure of the new year: Maintaining my health, contributing to the experience of we people at the center, playing the blues, watching my grandkids grow, hearing from you.
From Mark Twain:
- All you need in this life is ignorance and confidence, and then success is sure.
Listening to an article on Morning Edition this week, Is It Safe for Medical Residents to Work 30-Hour Shifts? A study has begun randomly putting some residents in 30 hour shifts and others in 16 hour shifts to see if there is a difference the proportion of patients who die within 30 days (can’t believe I’m writing that, but the outcome being measured is 30 day mortality, really). In 2003 a law was passed limiting residents to 16 hour shift maximums. Hospitals want to go back to 30 hour shifts because the 16 hour shifts are more expensive. A concern is that 30 hours is too long and dangerous. As a young emergency and intensive care nurse I found 12 hours to be my limit. Read More