Why being a "bad" patient is a "good" thing

[Nomad]

I couldn't get the link to work, so I have pasted the article below from Cnn.health. It is about advocating for yourself (or having a trusted advocate for you) in the hospital.

It's a long story, but I spent two days in the hospital about ten days ago mostly for tests. It was HORRIBLE. Fortunately, nothing serious was happening...but the potential for problems was obvious to me. Things I needed took five hours to get to me...all orders had to go through a "hospitalist" who was no where to be found and I had one medication ordered for me that did NOT seem appropriate (two blood pressure medications one morning...when my blood pressure is fine and that wasn't the issue anyway).

This article really sums up how I feel....speak up for yourself, take someone with you who is familiar with your case and one more piece of advice...sneak your meds in your purse or suitcase. They didn't have all of mine at the hospital pharmacy....

Sex in the City Actor
Saved his life by being a "bad" patient

By Elizabeth Cohen
CNN Medical Correspondent

(CNN) -- You probably know Evan Handler as Harry Goldenblatt, Charlotte York's husband on HBO's "Sex and the City," or as Charlie Runkle, the agent for David Duchovny's character on "Californication." What you probably don't know is that he's a passionate patient advocate, based on his experience being treated for leukemia in the mid- and late-1980s.


Actor Evan Handler, currently appearing in "Californication," defied statistics and survived leukemia.

In many ways, Handler is the ultimate empowered patient. "I learned that I must always remain in control, double-check everyone's work, and trust no one completely," Handler wrote of his approximately eight months in the hospital. "I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions."

In his books "It's Only Temporary," and "Time on Fire," Handler wrote that during his months in the hospital, he was given intravenous drugs that were supposed to go to another patient, that nurses tried to give him medications his doctors had forbidden for him and that staff members refused to follow the hospital's posted hygiene precautions for immunosuppressed patients like himself.

Handler survived when statistics said he shouldn't have. He endured round after round of chemotherapy, one infection after another and a bone marrow transplant. In this conversation with CNN Medical Correspondent Elizabeth Cohen, Handler discusses firing your doctor, tattooing medical directives on your stomach and the importance of not doing exactly what you're told. Watch more on what you might gain from being a 'bad' patient »

Elizabeth Cohen: Were you a "bad" patient?

Evan Handler: The irony of "bad" patients is that they actually do better for themselves. ... There were hundreds and hundreds of instances where my being a "bad" patient saved my life.

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Cohen: You write about how nurses tried to give you drugs to which you'd had "horrendous adverse reactions" even though doctors had explicitly written in your chart you shouldn't have those drugs. A friend of mine had a similar problem, and we decided maybe he should have hung a sign around his neck with a list of the drugs he wasn't supposed to get.

Handler: That doesn't sound like a bad idea. [A doctor once told me about] a registered nurse who had a "Do Not Resuscitate" order tattooed on her abdomen. She said she felt it was the only way her wishes would be respected.

Cohen: You write about how you became "a criminal of sorts" by forging your doctor's signature on authorization slips so your bloodwork would be done by a lab that ran the tests more quickly. Were you afraid you'd get caught?

Handler: Nothing bad is going to happen to you if you don't do exactly as you're told. They weren't going to put me in jail. I worried about getting caught only because then I wouldn't be able to do it any more.

Cohen: You describe your first doctor as being nasty, hostile and disrespectful. He yelled at your father for calling him on the phone with a question about your care. He yelled at you when you were in the middle of chemotherapy and came to see him with a rash and a fever because the fever was only 100 degrees. Did you wait too long to fire him?

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Handler: Oh, yeah. Doctors had told me that I would be endangering my care if I switched doctors, but that advice was criminal. Look, the only way to change things is through the marketplace. Recently I needed to have something in my mouth looked at. The doctor performed a biopsy without lidocaine -- just put a blade in my mouth and cut without telling me. I never went back, and I wrote him a three-page letter. You should leave a bad doctor, and if you have the energy, tell them why you left.


Cohen: When you were being treated for leukemia, you were very, very sick. You said sometimes you were barely conscious. How'd you keep up the stamina to keep double-checking everyone's work?

Handler: I was lucky to be able to maintain my strength and do it as long as I did, and my girlfriend at the time, Jackie, was willing to sit by my side and advocate for me, and she was very skilled at doing it. You wonder, how many people die from illnesses because the strength to keep up vigilance runs out?

[totoro]

Great story! I like him.
Makes me feel better about the times I have mouthed off to all of those Doc's!!!

[mrscatinthehat]

Sounds like a strong person to have on ones side. Not to mention on his own side.

beth

[susiestar]

He gives VERY good advice. When I was in the hosp recently they refused to give me maintenance meds which, when stopped abruptly, lead to seizures. They also refused, at one point, to TELL me what meds they were giving me. One nurse didn't want to wash her hands before giving me an injection - and said some very nasty things when I asked ehr to. They also REFUSED to call my regular doctor the second day, when I was awake and coherent. Said I had to stick with the doc who was on call when I came in. THAT doc wouldn't even come talk to me - she spoke to my dh in the hallway instead of coming in to check on me, to see if I had questions. And that was in the EVENING, around 7 pm - there was no word from her all day. And the day nurse that day refused to give me the medications that were ordered for every 2-4 hours. So I lay there in pain, breathing through it, meditating to get away from it, and there was medication ordered. I found that out when the night nurse came in with the meds - and she was really shocked until she found out who the day nurse was.

Be very aware that some medications, even benadryl, or conditions like kidney or liver diseases or infections, can make drug tests for meth and other things come back positive. It is important to have someone you know there - both my mom and dh INSISTED that it wasn't a meth overdose (I actually wouldn't even know where to find it, and would be totally TERRIFIED that it would interact with my meds - I don't take ANY herbs or OTC meds unless my doc says tehy are OK b/c I am on enouhg meds and they could interact badly.) But, if mom and dh hadn't been there to stand up for me, I wouldn't have gotten appropriate treatment. Not at ALL.

And the nurses DID get upset at things like being asked to wash hands (it states clearly on the wall of the room that they are supposed to wash hand AND change gloves between patients). I had to get them to look up the side effects for the one new med I was on and SHOW them how what I came in with was listed right there.

So be a bad patient. READ your chart, insist on SEEING the medication labels EVERY time, don't let the vampires take your blood if they are not following proper protocol (handwashing, cleaning the vein site and then NOT touching it with a finger or a glove, etc...)

The actor is right. Being a BAD patient will save your life.

[hearts and roses]

Being a bad patient can save your life for sure. I'm sure being a bad patient has saved mine - a few times.

Years (eons) ago I collapsed my lung and ended up in the ER. H, then my bf, was with me and the nurse asked him to leave because he wasn't 'family'. I stood up and said, "If he leaves, I leave. I'm paying the bill, so I call the shots". H stayed and the nurses were very nice to us. Later, the DR came in at about 10PM, after a full day in surgery and said I needed to have the surgery to repair my lung. I asked for a second opinion and since I wasn't in grave danger, I got one. At almost midnight they wanted to do the surgery but I said no, I wanted the DR to be fresh, so they booked me for first thing the next morning. My dr's PA rolled his eyes at me but I didn't care. Then, the DR kept sending his PA to check on me after the surgery. He was a rude little mean man, very insensitive. And to boot, my lung wasn't healing. I had to tell him to take me off the prednisone so my lung would seal!! One morning, after another rude exchange because he didn't answer my questions, I called a nurse in as my witness and fired him. H was appalled - Hahah. Later, my Pulmonary DR told me that all the nurses on the floor loved that I told the little meany off and fired him. He said I had 'cohones' and he loved that, even as I could barely draw breath, I was able to advocate for myself.

Never EVER be afraid to question your DRs.

[flutterbee]

Being a "good" patient is what led to me NOT being dx'd for so long. I am no longer a "good" patient. I'm not a difficult patient, but I am informed. In the hospital, I take nothing without knowing what it is. With my doctor, I take nothing without knowing the side effect profile, the efficacy, and determining in my own mind, as I know my body better than anyone else, if the cost/benefit ratio is acceptable to ME. I am fully informed and discuss alternatives with her, whether it be another med or a non-med treatment. Being a "bad" patient is what leads me to trust my gut and 'know' what I have going on (99.9% sure I have one of the spondy's and about 90% sure I have Cushing's) when the blood work (for the rheumatic stuff) comes back normal. Every piece of literature out there says you can not dx based solely on bloodwork, but that's what docs want to do. When you have symptoms that you can see and feel and touch, it's time to get past the bloodwork. And that's what keeps me looking for answers instead of giving up. Everyone does not fit into the little box the medical community likes to create. I'm fortunate to have the doctor that I do. But, I have her because I kept looking until I found one that wasn't going to dismiss me.

If you have a doctor that doesn't tolerate "bad" patients, then it's time to find another doctor.

And all of my experiences is what has created a passion to go into patient advocacy/education when I get better.

[TerryJ2]

WTG. I am in total agreement.
Thanks for a neat interview.

[judi]

And from the other side of the bed, I'm an advanced practice nurse. I want my patients to ask questions, I want them to have family members present, I want to know what meds you take, who prescribes them and what you are taking them for. I want to know an accurate history, what meds you take, including over the counter meds, what allergies do you have and what was the reaction, and I want to know the truth.

Most of my patients are wonderful: very open and forthright. However, in all honesty, I work with an inner city, very poor clientele. It takes awhile to establish a rapport and earn their trust.

If you don't get along with a provider, ask for a second opinion. Make sure you understand what meds/tests are being ordered and why. Make sure you know the prep for them. Make sure you understand the results.

Few providers dislike an intelligent consumer - be smart....after all, its your health.

[Hound dog]

I have too much medical background and education to be a good patient. I fired a doc once right in the middle of treating me in the hospital because he was incompetent. And since the idiot's failure to treat my acute renal failure properly.......well I came a leetle too close to death that time. I can think of several more times as well.

I badger with questions, I read forms, I know my rights and I know how to bully to make sure I'm treated properly.

If you have questions....ask. If you didn't understand the answer, ask again and tell them to spell it out to you in plain english. Don't sign a form unless you're positive of what exactly it is you're signing for....ie surgery, anesthetic, tests. If you don't want a procedure or treatment or test you have the right to say NO. If you have doubts get a 2nd, 3rd, or even 4th opinion if you need to in order to find answers.

I've had nurses try to give me meds that I'm allergic to while in hosp for failing to read the big red band I wore stating I was allergic to it. I've even had them give me food before tests that are NPO (nothing by mouth) which meaning nothing from midnight before the test until after test is performed.

Most mistakes aren't deliberate or even out of stupidity. Nurses are over worked and over stressed. Docs, well they're as human as we are. And they have hundreds of patients and aren't going to remember one small maybe vital detail about you unless they see you so often they start thinking of you as family.

Heck, last time I was in......during the heart attack.......I had to tell them that the cardiac diet wasn't good enough.....I have to also eat the kidney diet. Because they were so geared toward the heart no one was paying attention to the fact that I'm a kidney patient as well. And I still had to send food back to the kitchen and request something else.

Stand up for yourself.

Climbing down from the soapbox now.

[KTMom91]

I fired an orthopedist for not having the MRI that was done four weeks previously. I fired him at the top of my voice while standing in his very crowded waiting room leaning on my walker. My mom says I made a great speech...wish I could remember what I said!

When Hubby was dx'd ADD, I told him to tell the doc NO Strattera, because Hubby had previously been dx'd unipolar depressive, and my research told me this was not a good mix. Hubby is much more polite (a good patient), and what a ride that was! After trying to reach the doc, and failing, I slowly ramped Hubby up to the weight appropriate dose, and kept a spreadsheet of dosage and behaviors. At his next appt, I handed over the spreadsheet, discussed our awful month, and said, "Ritalin. Now, please." Hubby listens a bit better now.