No one studies the effort of managing one's health care

[firecat]

This is yet another thing that people with medical conditions get blamed for—not managing their own care well enough, although according to this article NO ONE studies the efforts required to manage one's own health care.

(Content note: one use of the "O-word")

"But American medicine demands another scarce resource from patients, and that is their time. The time it takes to check in on the status of a prescription, to wait for a doctor, to take time away from work to sit on hold and hope that, at some point, someone will pick up the phone.
...
"There is a risk associated with not measuring patient work: namely, that patients will give up when life gets in the way. This is an especially acute worry for lower-income patients, who often work for hourly wages and have little space to change their schedules."

http://www.vox.com/2016/6/1/11712776/healthcare-footprint

Comments

[snippy]

I read that earlier today and realized how lucky I was to have a doctor who has a nurse who is specifically trained to help patients with executive function stuff. For example, when I was given a bunch of difficult instructions about when to take meds and when to eat and when to exercise and when I could go to bed, the nurse helped me work out a schedule that went around my job and preferred sleep hours. And how lucky that all my docs deal with the preclearance for insurance before asking the testing facilities to call me to schedule an appointment.

[lilacsigil]

Yeah, I both do my own healthwork and work in a healthcare job, which means that I do my best to help other people with it as well. I work in a small, rural pharmacy which means that we have a bit more time to talk with customers. Some people from the city get incredibly excited when we actually spend time discussing their medications with them and keep coming back with more questions. (Others are annoyed that we actually want to ask questions like "Do you take [medication with a potentially fatal interaction with what you want to buy]?"

And, being Australian, I get to spend very little time on insurance as the vast majority of my primary care (with the major exception of dentistry) is covered by the government, and whatever I have to pay in addition is fixed, usually at a fairly low price.

[snippy]

Also, sinanju works at a clinic that does all the preclearance and scheduling for people who are on the liver transplant list and has told me HIPAA-redacted stories about the trials of getting that work done on behalf of patients.

[johnpalmer]

Heh. One of the things I found frustrating was that I was the only one to dig and think and consider about what mystery was bothering me. Just that part - a non-medically trained person trying desperately to understand medicine enough to ask he right questions, is a big deal.

[silveradept]

If anyone really did study what it takes to look after yourself, the furor at the Veterans Administration delays would be a tea candle in comparison. But since it affects those lower on the social ladder more, it can be safely ignored by those who have the power to change it.

[leafrider.livejournal.com]

That is true, I have noticed even without any serious chronic health issues, it's a lot of effort at times to get things done and manage it all.

We used to go to Scripps Clinic when it was nonprofit, and they had a really good thing there, where someone who needed a lot of care could have a scheduler help them coordinate everything and get a lot done in one day so they weren't juggling multiple appointments. Then the clinic went for-profit, except for its research, and that service went away. Really too bad. Everyone needs that kind of help, among other things.

Everywhere medical care seems arranged to make things more convenient for the providers, not very convenient at all for the patient. Even for a healthy patient just managing checkup it can be a hassle. Even worse for someone who needs more or more specialized care!

[mama-hogswatch.livejournal.com]

I have given up mostly going to the doctor because I can't keep up with the appointments, chasing down the paperwork, arguing with the insurance company to make sure it gets paid for properly.... (And yes, I know how incredibly lucky I am even to have insurance and all that smack, not to mention the fact that I'm in somewhat robust health for my demographics.)

I am sure I will die younger than otherwise because of it, but given what end of life care and its costs are, a small and cynical side of me wonders if there is not some engineering going on.