The ‘D’ word..

 

Psssst!! You…..yes, you!..Are you a patient? Then we need to have a talk. Pull your chair in close, tilt your screen for privacy and take your anxiety and rage medications because this could get rocky..

 

docpatientmemeIf you have a body that is malfunctioning you probably have some mileage with the Healthcare System. If you are one of the lucky ones, you went in, got attention and advice, got better and moved on. But if you are a chronic patient, you may have had a very different experience..

 

When I was a child (when I was merely frequently, not chronically, ill..), doctors held a mythic place in my worldscape; they were kindly and deliberate people with stethoscopes around their necks who would come to the house if I was really sick and relieve my mom’s worries. A cool hand on my brow, the front and back ritual of heartbeat and lung check, the tender abdominal palpations with eyes fixed on my face watching for reaction all added up to a warm and safe experience. My family had tracked Operating Room blood through its illustrious history and I was honored to be a part of the noble narrative of sickness and healing, and determined to be the best patient I could be.

 

I have come a long way since then with many, many hours in emergency rooms, waiting rooms, imaging rooms, lab cubicles, phlebotomists’ chairs, specialist’s chambers and hospices, both as patient and witness to others. I am the Healthcare consumer that Marketing folks drool over, the planetary gear trapped in the toothed maw of Medicine. I have witnessed the passing of the Age of Practicing Medicine, snuffed out with a pillow over its face in a one-bed rural clinic by an insurance agent in a white coat, and I am watching agog the messy dawn of the Epoch of Corporate Healthcare, a fiasco of intubation, beeping machines, absurd costs, diminishing wellness and a highly-trained and educated Medical Establishment that’s impatient and often oblivious with pesky people like me, the patient.

 

Gone are the days of a caring hand on the arm, a partnership in healing, and a basic respect for me, the patient, as a human being. I am now an object to be dealt with, a faulty sack of fluid that comes appended to a number that indicates the amount of power, wealth and influence I wield which in turn predicates the level of ‘care’ I may receive.

 

New!Improved!Healthcare, it would seem, may or may not include actual ‘Kare’ (Registered Trademark, Patent Pending..), in any sense of the word.  It is quite normal to have to show up 15 minutes early for a medical appointment only to have to wait 90 minutes to see a nurse’s aide that disinterestedly takes vital signs while avoiding eye or skin contact, wait another 15 minutes alone in an office until a white coat whirls in with a fluster, whips opens a laptop, and taps away as you outline your concerns. More tapping to do online research, a pause, and then a Pronouncement, which may or may not be accompanied by a Prescription or a Referral. Job done(!), doctor closes laptop and stands cutting off questions (Do NOT mention Google or anything you might have found online!! Do NOT ask for pain relief!) and briskly exits, reminding you to come back in 6 weeks/3 months/ etc. and to be sure to check out before leaving. Protestations and self-advocacy are met with a sneering look that leaves one in no doubt as to what a “bad patient” they are. Total time is as short as they can possibly make it and the overwhelming impression is that one is a bother, not a person in need seeking succor.

 

It is easy to understand that doctors are caught in a terrible situation; balancing unreal job demands, massive student loans, threats of malpractice suits, insurance paperwork and bureaucracy nightmares, FDA regulations, AMA directives, DSM changes, continuing education to stay current, licensing, finding good staff and staying well themselves, but that does not excuse the arrogance and adversarial attitude with which I am treated. I have tried to have online discussions with doctors and have been castigated for bringing up acupuncture and other adjunctive therapies, and even for researching my own disease and its treatments. I get a whiff of fundamentalism in our conversations, where, under the banner of “Science”, they know best and every other way is heresy.

 

Many of these degreed people that I encounter seem afraid, afraid to acknowledge that theirs is a “best guess” world (like the rest of ours) that is fallible and open to improvement. Point out that in 50 years current treatment is going to look quaint and archaic, and doctors close ranks and get bristly. That’s a pretty broad brush to paint with, I know, but it’s my direct experience.

 

Did you know that in the first part of the 20th century doctors often believed it was fine to operate on infants and preemies without anesthesia as they couldn’t feel pain? Just 15 years ago I was told to take painkillers early and often in my rheumatoid arthritis flares so that the pain-response did not get entrenched and the stress would not feed further inflammation. Today, with the same condition, I am a drug-seeking, doctor-shopping bundle of pain and legal liability.

 

My Primary Care Physician retired suddenly, my Rheumatologist “doesn’t do pain meds” (which is surprising considering pain is the primary symptom of the disease) and has no referral to a Pain Management Center, and I can’t find a new Physician willing to take me on. One of them politely explained that she had filled her quota of pain patients and could not write any more prescriptions without repercussions. She recommended I try Dr. X, “who does that sort of thing”. He happens to have an opening in April. April!! (It’s now September..)

 

The system has somehow criminalized trying to alleviate pain in its continued ham-handed mashing in “The War on Drugs” and I have to keep reminding myself that I’m not a drug-seeker, I am a relief-seeker, and so far I have gotten little relief from “Western Medicine” beyond pain attenuation in 17 years of having this disease and all its encumbrances, not for lack of trying. I am reduced to doing the very thing that doctors shake their heads at and which drives the cost of healthcare up: seeking help from the place of last resort: the Emergency Room.

 

In the 21st century, I am going to call that out as an abject failure of policy and execution that should be laid at the feet of the Surgeon General of the United States

 

How, then, best to broach the divide between ‘us’ and ‘them’, doctors and patients?  I’m not hearing much noise from doctors regarding getting the drug wars out of Medicine, or reducing the profit-hungry, results-shy mess that it the insurance industry, or being in an inquiry that institutional certitude precludes.

 

Unless we learn to bridge this divide, we patients, especially pain patients, are on our own for now.