You know that feeling you get in the clinician’s office sometimes where you are talking about treatment options and your muscles start to tighten, frustration rises, and your brain starts to itch? Most likely, you are reacting to your clinician’s paternalism, which is rife within the healthcare system despite efforts to move toward patient-centricity and to “meet the patient where they are”.

The first time I experienced this, a clinician cut me out of the conversation completely. I was only 14, old enough to be told what was going on, but sent out of the room while the grown-ups discussed me and my treatment. Those visits had hugely negative impacts on me.

There are other facets to paternalism, as well:

It’s no secret that I am stubborn. I can admit when I’m wrong. Most of the time. Eventually.

Anyway, you get the idea. When I decide where I stand on an issue, after my usual research and skeptical analysis, it’s hard to dislodge, but there is one particular position I have held for nearly 20 years that I am starting to re-evaluate.

I developed cataracts when I was 16 because one factor in the treatment for meningitis is high doses of steroids, which promote cataract formation. Despite my age and medical history, even back then, the doctor failed to inform me of my diagnosis. I found out when my godmother said something about it, but that is anissue for another day.

Since there is no effective, non-invasive treatment for cataracts, they have continued to grow, and grow, and grow. My ophthalmologist says that cataracts grow at about the same rate as sand moves, but after 30 years, dunes do grow.

There’s a movement in some patient-centric care circles toward something called patient-centered medical home, or PCMH. This model brings together a team of clinicians around a primary care office or family practice, a one-stop-shop for care, prescriptions, psychological health care, and many have contracts with specialists to make for easy referrals. It also helps to distribute clinician burden and (hopefully) lessen burnout.

It has a lot of appeal. A team would be able to build a greater familiarity with each patient’s case, with more perspectives and more methods of treatment. Anyone familiar with Kaiser Permanente’s approach will be familiar with the PCMH approach. It works for a lot of people, a whole lot of people.

But from my poster-child-for-complex-care-opinionated-engaged-and-empowered perspective, there are two related weaknesses in the PCMH structure which would make me hesitate to take part.

It’s not often I get to talk about how well things in the healthcare system work. Especially systemically as opposed to individually. I’ve had some good experiences with individuals, but generally the best I can say about the system is that it’s a hassle that costs me money.

The one exception I can think of is when I went from Aetna specialty pharmacy to another pharmacy benefits manager, and it was a disaster. When I met an Aetna pharmacy employee at a conference several years later, I told him I never knew I had it so good until I had to switch. He responded that no one had ever said anything like that to him.

In my post before the holiday break, I talked about self-sabotage, something at which I am an expert.

That also means I have become an expert at pulling myself out of it. Most of the time, it just runs its course, but sometimes I have to employ an old tool, a stronger one I developed during my first healthcare rollercoaster – escapism.

Escapism takes many forms: immersing yourself in a book, literally escaping by taking a trip, or even sinking into favorite hobbies like exercise or gardening. The point is to get out of your self-sabotaging brain, sink further into your “I need a break” brain, and shut out the world for a little while.

I am afraid of success.

Weird, right?

Nevertheless, sometimes, when I am at my absolute best, my contrary subconscious decides that, because I have taken so many emotional hits in the past, it’s time to deliver another one before the universe can. It’s an exhausting, unconventional way of exerting control. It’s also really unhealthy.

What does it look like?

There are a lot of things – little, nitpicky things – that affect how difficult the patient experience is, such as expense, physical access, health illiteracy, just lots and lots of things. Then, there are other people (aside from the doctor). Office staffs can make or break a patient’s experience at doctors’ offices.

Office Staff 1

This week, I had two appointments at two separate facilities within the same hospital system. I scheduled them carefully. (The staff at the second facility is not the comparison I am making. I mention it to make a point about respect.)

I try to keep an eye on various health-related public policy trends, on both the state and federal levels. It’s in my personal, educational, and professional blood. Every once in a while, a Supreme Court case will pique my interest, as well. I’m not sure what that says about me, especially these days.

Recently, I attended a briefing that made me aware of a case before it hit the Supreme Court. It caught me by surprise because it had progressed to a point where I thought it would have gotten some news coverage. General consensus is that it is too complicated to fit in the average sound bite.

But not for a blog post. Let me introduce you to Braidwood Management vs. Becerra.

When I was a kid, there was a cartoon, The Adventures of the Little Prince, where the main character lived on a tiny planet in space and caught a ride on a comet to get to Earth. Adventure ensued. (There’s a book, too, which I adore, but I can’t read unless I need a good cry.) One of the reasons I loved that show so much is that I wanted to live so close I could touch stars.

I still love space. I never studied astronomy, but I always consume pictures of stars, planets, galaxies, and this year, a black hole(!) as if it were my last chance. It’s something to wonder at for a person who is admittedly jaded.

Following last week’s post about how I push to appear normal, life decided to imitate art and illustrate why I don’t like to talk about my day-to-day because it would just be scary and overwhelming.

I had a two-day event this week I was really excited about. It was a new area to learn about and the hosts wanted my input for a roundtable they were holding. Everything went well the first day, but when I took off my jacket before getting in the car, one of what I view as my insulin pump’s design flaws – the lip on the part that goes into my body (infusion set) -- caught in the fabric of my shirt and came out.

I didn’t know it and as I drove home, so I was unaware that my blood sugar was rising quickly.