Patient becomes honorary staff member for the day, takes ownership of her health
My patient is a brilliant, thirty something-year old highly educated woman with type I diabetes. I’ve known her for a long time, since she needed to switch care from a paediatric endocrinologist to an endocrinologist for adults. She is sweet and fun, even though she can be fierce and fiery at times. She has type I diabetes. For anybody who is not familiar with type 1 I diabetes: this is a life threatening condition, where the pancreas doesn’t make any insulin at all (in her own words, she belongs to the “dead pancreas club”), so the glucose can reach levels as high as ten times the normal level and completely wipe out one’s livelihood after putting them in a coma first.
She has been living with this life-altering, life-threatening disease for many years. Even as a child, she always took charge of her life, and consistently checked and maintained her blood sugar at an excellent level. Things weren’t as complicated ten years ago: there were a few kinds of insulin, but mostly what she needed were two types of insulin, long acting and short acting and there were the blood sugar testing devices. They were either on the “approved” list or on the “not-approved” list by insurance companies (based on, literally, the deals various insurers would have that particular year with various drug manufacturers). We (her and I) mostly complied and got her the supplies she needed from the “approved list” and that was the end of the story.
As the medical technology grew more and more advanced and complex, my patient’s needs also changed. It turned out that she didn’t have to live with the inconvenience of four or more shots of insulin a day- she learned that there was a device (an insulin pump) that could deliver insulin in a continuous flux, somewhat similarly to the work a normally functioning pancreas is doing. Then, she learned that instead of checking her blood sugar ten to twenty times a day, she could use another device (a sensor) that, through a miniature cannula inserted in the subcutaneous tissue, would check her blood sugar and deliver the results to her cell phone automatically, as often as she desired. Of course, she would still need to check fingerstick glucoses (meaning she would still need to prick her finger every so often), because technology is great when it works- and completely useless when it doesn’t, and failures of the above mentioned devices were happening regularly.
Now, the insurance companies did not take it kindly to the sort of technological progress happening in the medical field. It was expensive for them to have a type I diabetic on their roster to start with, but with all the devices that would make a diabetic’s life easier and more pleasant, the cost of care would turn literally astronomical.
The insurers couldn’t prevent diabetics from joining their programs (it became illegal to discriminate patient enrollment based on pre-existing conditions) and they also couldn’t prevent patients from asking for the latest technology and the latest and best kind of insulin in caring for their condition. So the solution was beyond clever: make it difficult for the physicians to prescribe it. Put up barriers every time a prescription for anything that was on the “non-approved” list showed up. Make the doctor get a “pre-authorization”. What a “pre-authorization” means is that one (an administrative assistant at first, or, if there were no administrative assistants- like in my solo office, where I do everything from computer maintenance to janitorial work to actual seeing and treating patients- the doctor her/himself) would first fill out documents, submitting in writing the patient’s chart and the reasons the doctor needed to prescribe the mentioned technology or drug. More often than not, the “pre-authorization” was denied, and a one-to-one, peer-to-peer phone call was required (meaning that the prescribing doctor had to get on the phone with another doctor, employed by the insurer, and justify in excruciating detail their choice of treatment).
Now, there may have been circumstances of doctors that have been bribed by Big Pharma in the past, through various golf trips, expensive restaurant meals or just brown bags full of cash- I don’t know, I have never been on a golf trip, neither did I take a brown bag full of cash from any drug rep (or anybody for that matter!). (I may have gone to a few restaurants to hear presentations about new developments in the field, plus I may have eaten a few free meals provided by the Big Pharma, in my previous office, where the connection to it had a long history.)
But I have a hard time believing that doctors as a group are a wasteful or corrupted group of people. I am certain that most doctors are highly ethical, and that they went into medicine for all the right reasons: to take care of people and to do good in the world.
What I am trying to say here, is that, in order for the PATIENT to have their ever increasing needs met, the doctor has to jump through innumerable hoops, spending literally hours, filling out forms and fielding phone calls, often on hold for tens of minutes, if not full hours, at a time.
There are two possibilities here: either the doctor has office staff, in which case, well trained staff can take care of most steps (but please, since we live in a capitalist society where nothing is free, keep in mind who the bearer of the cost of office staff is), or, like in my case, the doctor has no office staff (by choice) and she/he has to do everything herself. My choice of going into private practice by myself was motivated by many factors, but the main one, was autonomy and sovereignty over my individual choices and my time.
I know how much I want my patient to have the latest and the best of everything- but how do I justify to myself the tremendous burden that her needs are imposing on my time? This most valuable resource, time- that once gone, nothing will ever replace. Time spent on administrative tasks means time away from my family, from my writing, from my other patients who need me.
What is the way out of this mystery? We, the empaths have been put in the middle of the war happening between patients and their insurers. We have agreed to take on this burden, which ended up with us burned out, dehumanised and many times, vilified by the public, precisely because we want to help and we want to be everything to everybody.
Why did we agree to this? I guess we were never explicitly asked.
Slowly, insidiously, the curse and obscenity of “cost saving” has infiltrated our professional lives and has turned us into the “bad guys”.
How do I stop myself from feeling resentment at the demands placed on me by the system?
I thought I found a solution (at the advice of one of my mentors) in asking patients to be temporary, honorary office staff members and make all the calls and take care of all the paperwork, be in charge again of their own care, be involved, and see first hand the price that had to be paid for their every increasing needs.
This worked for a while, until the patient said she was “fed up” with the system and asked me to go on with the next steps.
When I told her that there’s a price for my administrative time, it turned out she didn’t want to pay and went back to doing everything herself, irritated and disappointed.
I do have a lot of compassion for people who are not well and I am particularly familiar with people with type I diabetes, who have a chronic condition, that needs constant attention and care, and the way I see it, is that a system’s problem has been dumped on individuals. The patient has to bear the burden of their condition alone, in isolation, from a very unresourced place. The doctor has to bear the burden of the all the administrative, time-consuming, meaningless tasks that will save the insurance company a buck or two. When the doctor revolts, and refuses to give their time and energy for free, she/he is accused of being money-hungry, greedy or plain heartless.
A huge societal flaw has been perversely turned into emotionally manipulating the people with the biggest hearts into giving away their resources for free. In staying silent, in continuing to buy into the corrupt, rotten, nefarious “medical insurance” system, all of us approve of the ways the people with the biggest medical needs (that they did NOT inflict upon themselves) and the kindest and brightest of us are treated.
No wonder patients detest our health care system and doctors are leaving medicine in droves.