"YOU need to do something about the blood sugar! It's too high," she said with a raised voice. I tried to reinforce my constant, diligent efforts and remind her (with a hoarse voice) that with brittle type 1 Diabetes, third trimester hormones and the physical stress of an upper respiratory infection, that 168 was still pretty good. She failed to effectively analyze blood sugar patterns, or provide supportive care (fluids) for any dehydration the infection may have caused. She had no suggestions, only bluster and blame.
"Advocate for yourself," they say.
Bedside manner aside, she showed how clueless she was about type 1 in general, let alone in pregnancy...and seemed to have no clue what was in my chart.
Speaking of the chart...
Before my first successful pregnancy I sought a consulatation in the same high risk maternal and fetal medicine office (mfm). The doctor I saw during my consultation, instead if getting to know me and trying to help me, bullied me to the point of tears for most of the appointment. She did so because not ALL of my medical records (which had been requested, at my expense, or hand provided by me) were in the office yet.
After work the next day, I brought what I had gathered from home (about 120 pages). I presented them to the receptionist, having rushed to the office about 15 min before they closed. I explained that the doctor wanted as many records as possible, and that I gathered what I had to satisfy her while the others were on their way. The receptionist *refused* to photocopy them. I ran to a store to *pay* to get them photocopied and ran back, sweating and shaking, to present them to her before they closed.
"Advocate for yourself" they say. Be empowered.
A few months later when I was pregnant, my husband and I waited for the NP, who “ran” the office, for 1.5 hours in the waiting room and THEN 1.5 hours in the exam room. I waited in nothing but a paper gown. Despite having been bullied regarding providing comprehensive records, and superfluous proof that I had type 1 Diabetes, she knew little about my case, and in a flabbergasted tone, scolded me when I referred her to... my records.
But it is the PATIENT whose motivation is judged.
Flash back to the Fall of 2006, I was hospitalized in a step down unit for a fever and severe diarrhea (also DKA signs and symptoms on labs). On the third morning in the hospital a young resident came into my room, stood at my bedside, and shook her finger in my face..."You're not going anywhere" she said with a punitive tone.
I was still having multiple episodes of diarrhea a day, with fevers and they hadn't figured out why yet. She didn't offer any explanation, only a finger wag in my face. The GI doctor also decided to treat some hypoglycemia I had been having by attempting to *remove* my basal insulin *altogether*. Thank God the Endocrinologist who headed a study I was participating in, called to say that was a dangerous idea.
"Patients need to advocate."
Thank God for the nursing staff on that unit. And Matt, who never left my side. I haven’t trusted a whole nursing staff before or after that hospital experience, they were responsive, and although the treatments that were ordered were not always optimal, they compensated...so I didn't have to...After all, I was the person too weak to stand on my own. They were also kind
and respectful.
and respectful.
A few weeks earlier I saw my first Endocrinologist, in Pittsburgh. My mom was staying with us for 2 weeks because of my recent onset and second hospitalization. Matt, my mom, and I all went to the appointment. When the doctor called me in he noticed Matt and my mom. He vaguely greeted me, looked my mom, and Matt, up and down and said "You're a big person (adult - I assume he meant), I'm a big person, we're all big people here, so can everyone else step out?” I explained who they were, and since I wasn't prepared for a question like that, I *asked* if Matt could stay. I shake my head every time I think of that. Suffice it to say he went on to disinterestedly give me advice based loosely the on standards of care for type 2 Diabetes. I never went back.
Advocate. Take control. Be empowered.
In my experience, in addition to the buzz words of patient “advocacy,” “empowerment,” and “Motivation,” “Person First” language has also become increasingly popular in clinical care. Itcan seem like a nice idea at first, even one that I “got into” for a short period of time. After all, I am not just a “Type 1 Diabetic” I AM a PERSON with Diabetes.
Hold up...does that mean if we have a medical condition, everyone forgets that we are people?
I am a Mother (not just a person with children), I am a Dietitian (not just a person with Nutrition education and credentials), I am a Type 1 Diabetic (not just a PWD1 - “person with Diabetes, type 1”).
As I mentioned in the intro to this blog; Type 1 Diabetes is not all of me, but is a permanent and pervasive part of my life. When the perspective “PWD1” is imposed by a clinician onto a patient it can minimize the seriousness, relentlessness and permanence of the disease. It maybecome Clinician serving, rather than empowering for the patient. Perhaps it shows that THEY are uncomfortable with the nuances and overwhelming untertaking that comes with treating a Type 1 Diabetic. While a patient’s wishes to be referred to as a “Person with Type 1 Diabetes,” should be respected, I have heard far more clinicians encourage the terminology than patients. “Type 1 Diabetic. Never say that. It’s like scratching a blackboard for ME. It’s ‘Person with Diabetes’” said a *Diabetes free* RN, CDE.
Be empowered. It’s about motivation. “You’re the one driving the bus,” they’ll say.
Of course I am, I wouldn’t be alive if I wasn’t.
We already know that. The thing is...I didn’t choose this. I didn’t play any role in developing Type 1 Diabetes and having some interesting “side” diseases that effect it, and it effects. I didn’t compete to become a “Type 1 Diabetic.” I am not a competive person. I didn’t study for it. I didn’t write an essay to get it. I didn’t wait anxiously for an envelope in the mail that read, “Congratulations, you’re a Type 1 Diabetic!” I don’t get a vacation. I don’t get paid for this. QUITE the contrary. I just do it. I have to, or I would be gravely ill all the time; or, I wouldn’t survive. I have to. It’s ok for me to say that “I HAVE to.” Because I DO.
So, when you know that I am doing everything I know to do to take care of myself. When you see I have educated myself to the point of returning to school to become a healthcare professional. I come to appointments, do my research and take my medicine, take care of myself, all day everyday, at the expense of “Quality of Life.”
When you see that I am motivated, empowered, informed and diligent, but still sick...and I come seeking help...Don’t remind me that I am “driving the bus.” I drive well. Just give me the directions that I need to get there safely. Help ME, instead of honoring a heady therapeutic construct that may indeed serve the Clinician more than the patient. All of these semantics end up obscuring the real task, which is to tangibly improve the standards of care, and safety for Type 1 Diabetics.
When they say they can’t help; Advocate for me.
When I wait in a cold room, in a paper gown;
Empower me.
When they leave me alone in the ER hallway, and I vomit onto the floor, because no one comes when I ask for help...Don’t send the RN and Resident over to say, with an heir of CYA solidarity, “Well, you didn’t SAY you were nauseous...”
Advocate.
When no one comes to help. When no one comes to help. When I have low blood sugar. When I am vomiting onto the floor;
Advocate.
When they laugh at me;
Motivate me.
When the high risk OB uses a call center that tries to make an appointment with someone who hasn’t worked there in a couple of years...when they say they don’t have the “new person listed” ... and they refuse to connect me with the office, and I physically go to the office and get the first available appointment...and then get scolded because I haven’t been back in 3-4 weeks instead of 2;
Empower me.
When the high risk OB uses a call center that tries to make an appointment with someone who hasn’t worked there in a couple of years...when they say they don’t have the “new person listed” ... and they refuse to connect me with the office, and I physically go to the office and get the first available appointment...and then get scolded because I haven’t been back in 3-4 weeks instead of 2;
Empower me.
When they question the detailed note that I carry which explains my disease and medications, in case I am unable to explain during an acute illness, or while recovering; Advocate.
When they present me with a form to sign that says I will be in charge of my own Diabetes care...even though I am about to have a baby/surgery/sedation/anesthesia; Advocate.
When they’re too busy to give adequate report; Advocate.
When they say they won’t get my husband, even though it’s past the time they are supposed to get him; Advocate.
When there are roadblocks to care. When receptionists are doing triage. When it will be 6 weeks for sick appointment; Advocate.
When the chart is wrong; Empower me.
When the diagnosis is wrong. When the treatment is wrong. When I get sicker and sicker; Advocate.
When they don’t listen, don’t know, don’t care; Motivate me.
When there are roadblocks to care. When receptionists are doing triage. When it will be 6 weeks for sick appointment; Advocate.
When the chart is wrong; Empower me.
When the diagnosis is wrong. When the treatment is wrong. When I get sicker and sicker; Advocate.
When they don’t listen, don’t know, don’t care; Motivate me.
When they go home and leave me to the fray of the unit way too soon; Advocate
When they send someone who doesn’t know my case instead of showing up themselves; Advocate.
When they come over to me and my husband and say,”...Well my role is to make the nurses jobs as easy as possible;” Advocate.
When I calmly ask questions and they call me nervous...When they write “Patient was nervous.” Even though I wasn’t, and said so; Advocate.
When I don’t ask questions and they say I should be “empowered,” or “Motivated;” Empower me.
When I advocate for myself, prepare and communicate...and they marginalize me;
Advocate.
When I can’t do it.
When I can’t, and you can;
Advocate.
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