PATIENTS ARE PARTNERS, ALL THE TIME.

Severe acute pancreatitis, the result of familial hypertriglyceridemia, spiking an A1C test result of 8.  Likely caused by the hypertriglyceridemia, hopefully reversible, that 8 means triglyceride induced diabetes.  As the inflammation in the pancreas continues healing, with proper diet, exercise and strict adherence to medications, the chance of the diabetes resolving itself is high.  It's all a foreign language to me.

Fortunately, there was no damage to the pancreas.  The lipid issue, specifically this uber high triglyceride thing, is something we've known about for over a decade.  The fallout, something we knew could elevate the risk of heart disease, is epic.  I know about breast cancer.  I understand about the problems associated with proper treatment of those with mental illness.  Who knew about this pancreas stuff.  The rest, I learned as I went along.  Feeling for things as if I were blind.....

"As I went along" involved a 12 day stint in an ICU of a NYC hospital.  The care was excellent.  Keeping the patient, my spouse, (or the loved one who was not high as a kite on morphine--that would be me) in the loop, in a word SUCKED.  This was the inverse of that old phrase:  The operation was a success but the patient died.  My phrase might be more along the lines of:  The patient is healing but the process could have been facilitated (and likely hastened along) by including us in the decision making process.  No one asked a damn question.  They just looked at numbers on charts.  Communication was dismissive, paternalistic and frankly, broke several of the rules on the NYS Patient Bill of Rights.

I am an ePatient.  Whatever that word means, it's me.  And, with many thanks to HIT Consultant  I was quite stunned, exceptionally humbled and most of all, extremely gratified to find myself on a list of 15 Influential ePatients and Patient Advocates to Follow.  The article was posted on November 3rd.  I was up to my eyeballs in medications, diabetes meters, lipid profiles, insulin pens and follow up doctor appointments with the specialists who know about the way the fats and the sugars interact in our blood and how it is all regulated by the pancreas.  I spent so much time fighting for information, I had no time to research so I could ask good questions and provide necessary information.  Not that it would have mattered.  No one wanted to listen and for that matter, no one wanted to share information, either.

I was fever free from my Reclast infusion for less than 24 hours when this episode began.  Three hours into what appeared to be heart attack symptoms, I was finally in my car, driving like a lunatic, to the nearest hospital.  Calling 911 is ALWAYS the prudent thing to do.  I've previously said I would suck at being a boy scout with that whole Be Prepared Thing but this time, I WAS prepared.  As I watched the pain level increase, I already mapped out the route to the nearest hospital.  It was a 7 minute drive.  Presuming the driving was done legally.  I ran every light.  It was almost 11PM and the streets were empty.  I know I got to the hospital far quicker than any ambulance would have gotten to us.

Within an hour, the emergency room staff realized it was pancreatitis, not a heart attack.  And who KNEW until well afterward, this could be deadly.  I never expected a full hospital admission and I certainly could not even fathom ICU for 12 days but that's what happened.  The hospital is part of a large conglomerate.  In addition to slapping their name on a whole mess of hospitals on Long Island, they have now ventured into NYC.  In addition to THAT, they started their own health insurance company.  That all seems a little fishy, a little monopolistic and I, for one, can't see how it benefits patients to have one organization controlling everything but I haven't investigated that in enough detail to make an intelligent comment.

In no particular order, the highlights of 12 days of ICU.  I did 12-14 hour bedside stints every single day.  I watched the numbers on the meters, I watched the IV bags drip, I watched the nurses.  Most were unbelievably excellent.  A few, not so much.  The doctors.  Like I said, the care was excellent.  The communication, awful.  Not only communicating with us but communicating with each other.

Two sets of numbers were in play: The triglycerides which seemed to fall under the responsibility of the GI doctor.  The glucose was the responsibility of the endocrinologist.  And then, there is the attending physician who gets to make their own rules.  The word "cluster*K" is what jumps to mind.  The treatment for pancreatitis as severe as his? "Nothing by mouth."

Nothing by mouth means nothing.  Not an ice chip, not a sip of water.  Try that for a day or two and then imagine the frustration at day 5.  Everything went through an IV line until the NG tube was inserted through the nose, down the esophagus to the point where anything that went into that tube would bypass the pancreas.  An X-ray confirmed the tube was properly placed.  Just the thought gives me the creeps.  The tube was used about three times for feeding.  It was used twice a day to dispense oral medications.  It was a waste.

Every day the same nonsense played out.  The GI doctor would come in and say, "We are starting you on a liquid diet today."  Then the endo would come in and say, "NO food."  The next day, they would switch roles.  The liquid diet was okay with the endocrinologist and the GI doc would overrule with an "Absolutely no food."  These two doctors were NOT conferring with each other.  Nor were they looking at the patient as a whole person.  Nor were they asking any questions of either one of us.  They were looking at numbers.  Way to go.  Great way to treat a systemic problem..... by focusing on one item in a vacuum.  Pissed.Me.Off.  Then, they were in agreement on the whole thing and the hospital attending stopped the process.

 Unfortunately, I wasn't around for those visits.  I was there for rounds which is when episode one occurred.  I wanted to be at the bedside when the doctor spoke to the patient.  This is my loved one who is high on morphine and can't really understand much of what is being said.  He was told a CT was being done first thing in the morning to see what was happening in the hope that we could at least add ice chips to the repertoire.  She entered the room with her entourage, told me I had to leave and I informed her I would not be leaving.  I needed to hear what was being said FIRST HAND and in real time.

I will be the first to admit I can get a bit overly zealous and I'm glad another loved one was there to bear witness to the scene that ensued.  After it was over, I asked if I was over the top.  "Over the top, you didn't see my face.  I was ready to explode, waiting for you to open your mouth.  How dare any doctor speak to a patient or a family member the way she spoke to you."  So, what did she say?

It didn't start well.  When I said I was staying, she asked me, "Are you A DOCTOR?"  With emphasis on those words.  As if....  she's God and I'm a moron.  Wrong ePatient, wrong patient advocate, wrong  loved one to speak to in that tone and imply that only a doctor could be bedside.  And it got better, "Well who exactly are you?"  She knew damn well it was my husband in that bed but she wanted to know who I am professionally that would entitle me to remain bedside.  It got ugly.  She began saying no CT scan was ordered and I lost my shit.  I was there for that conversation but here was the attending overruling the specialist.  It got loud.  I demanded the specialist be contacted immediately.  She told me I had no right to tell her how to do her job.  I told her I was sick and tired of having three doctors dispensing three different sets of information.  I don't think that was ever properly resolved until many days later.

What I recall about that exchange with great clarity?  I remember her dismissing me with a remark about the size of the team that was caring for him.  And I recall asking her if the concept of patient centered care meant anything to her.  When she looked at me with a puzzled expression, I got damn nasty.  "TEAM?  I don't care how many people are on the team," my voice dripping with sarcasm, "there are two people who not part of the team."  She began to attempt to say something but I cut her off.  "The two most important people are missing for your team, HIM and ME."  The other thing I recall with clarity?  When I returned to the room to allow her privacy to attend to the patient in the other bed, my husband asked me what the hell I said to her.  "All I know is she's been in here every day with the same gig.  The doctor that walked around after you finished with that conversation was a completely different person."  Score one for the empowered patient team.  

I wanted lab results.  They were drawing blood every six hours for several days.  I was blown off.  Occasionally, someone would throw me a bone and toss out a triglyceride number.  No one, however, sat down with me and went over the series of numbers so I could explain what I KNEW about the triglycerides, specific to this unique patient.  I could have shared ten years of knowledge, ten years of explaining that numbers that are absolutely not normal for the rest of us, are not abnormal for the man in the bed.  Instead, they stopped the feeding tube.  This spikes the sugar and that spikes the fat and I'm ready to spike a computer screen in frustration.

Their idea of shared decision making?  Hanging an IV bag and saying, "This is Miracle Medication." Sometimes, they would add, "It's for an infection."  For the record, there was no infection but they kept hanging every different antibiotic over a high white count or recurrent fevers which could have been due to the systemic inflammation.  That's exactly what happened to me with the reclast.  When they added an infectious disease doctor to the team, he explained he would be checking for C-Diff which he was certain was the cause of the fevers.  He was concerned about a blood fungus from all of these antibiotics.  I wanted them stopped, I told them so, they refused and just kept hanging bags.  I'll presume they asked my spouse if it was okay to hang the bag when I wasn't there.

Bottom line, there was no infection.  Nothing in the blood cultures and that "definite C-Diff" diagnosis by the wonderful infectious disease doctor was a bust, too.  I would venture to say he was given IV antibiotics for at least six days and there were at least as many different types administered.  All for nothing.  Way to go on creating a situation of antibiotic resistance.  Dr Infectious Disease had his own attitude going when I was asking questions.  G'damn it.  I'm sitting beside the bed.  Here's the doctor deliberately only looking at my husband.  WHAT is that all about?  Someone needs to teach these guys about the art of medicine.  It wasn't until my husband finally mentioned my involvement with Sloan Kettering and some of the volunteering I do, that he began to glance in my direction.  Sparingly.  At best.

Then, there was the evening, about two days into this thing...... one of the doctors changed the pain medication schedule.  Pancreatitis is apparently, very painful.  He was given morphine every four hours.  During the shift change, the doctor going off shift changed the schedule to every six hours.  It's 3 1/2 hours and the pain is creeping up.  It was then we were informed, "Oh no, his schedule was changed."  And again, I REALLY lost it.  Pain management is something I do understand and I understand it well.  You can't heal when your body is fighting severe pain.  He's at a 7 and the nurse is telling him she can't do anything for at least another two hours.  Yeah.  Not on my watch.  I demanded to get the on call doctor.  Amazingly, no doctor showed up but the medication did.

I almost laughed in the face of the next doctor who showed up the following day.  He didn't ask me to leave.  Instead, he did a 15 minute discussion on the importance of pain management.  Yeah, thanks.  You just regurgitated everything I was shouting about the night before.  I'm pretty sure I was gracious, but my face may have given away my disdain for his BS.

Yet another evening, I wanted to ask the attending something.  It was rather important and could have had dire consequences.  Among the things they do for pancreatitis is administer insulin.  His was in an IV and required hourly finger sticks to make sure his sugar wasn't too low.  At 8:30, he told the nurse that would be the last finger stick.  She immediately relayed this info to the attending who instructed her to slow the drip to half speed and promised he would be right in to talk to my husband. At 9:30, she did her job.  She approached him with kindness.  "Will you let me check your sugar?"  He was disgusted.  "What part of 'You are not sticking my finger again did you not understand' "  She was the consummate professional.  "I understand.  You do not want me to do this.  Am I correct?  You are refusing the test which is your right."  A simple and quiet, "Yes, I'm refusing the test."

The nurse knew that meant she had to get an order to stop the insulin.  The attending couldn't be bothered.  An hour had already passed from the announcement he would be in shortly to discuss this. In my world, shortly isn't an hour.  At 10:30, the insulin was still dripping,  the numbers in a downward trend.  That was the point when I caught the eye of the attending and asked if I could have a quick word with him.  I wanted the insulin drip stopped.  His reply, "We are in the midst of rounds.  When we are done, I'll send one of my residents in to speak to you."  Oh REALLY.  I sat until 11:30.  There should have been three additional finger sticks done since the insulin drip was still on.  I went out to the nurse and asked her what was happening.

The resident at the desk insisted, no fewer than five times, that she would be happy to go in and wake my husband to talk to him.  This was the first night my husband was able to sleep.  I told her I wanted the insulin stopped.  He refused the necessary monitoring which meant the insulin had to stop.  She refused to stop it without the attending ordering it.  We did a dance for several minutes until the nurse remembered that bill of rights.  She marched into his room and turned the insulin off at my instruction.  They were endangering his well-being by causing a severe sugar drop.  The resident told her she wasn't allowed to do that without a doctor ordering it and she just did it anyway.  Because it was the patient's right to refuse medication.  And he was clear in refusing the test and I made sure it was clear I understood that meant the insulin had to stop.  And the resident finally showed up some time after midnight.  And the attending couldn't be bothered to give me, a mere family member of an ICU patient the time of day.  Really awful.

One of my favorites?  A different set of rounding doctors.  I was in the room and my husband specifically instructed me not to leave his side.  He just wanted a second set of ears.  It wasn't any sort of, "Oh I can't bear to do this alone."  And truthfully, although he does not read this blog, this will be the one lousy post he does read and I don't need him getting 50 Shades of Irritated that I made him seem like a wimp.  So I remain.  And one of the residents motions me to the door.  "You have to leave.  We are going to ask your husband questions that he said he doesn't want you to hear the answers to."  I think I laughed right in her face.  This wasn't 30 seconds after he instructed me to remain bedside.  I told her she was mistaken.

I never start out in bitch mode but let me just say that under these circumstances, the bitch mode was coming quicker and quicker.  She insisted he had secrets.  There are no secrets.  A few days prior, maybe, but all family business was resolved by day three during this ICU debacle.  She persisted.  "He doesn't want you in the room."  And now, I'm in full bitch mode.  "We already established he DOES want me in the room."  She turned and said, "No, HE doesn't want you in the room."  I looked beyond her and is a tone, I said, "WHO is HE?"  as in "who are you referring to...."  I was legitimately confused.  Sleep deprived, running on empty and confused.  She points to the attending.  I wish I had a camera on my face because I know my expression had to be priceless.  My response was abrupt.  "The doctor?  Well that's just too damn bad,"  as I pushed my way passed her to my husband's side.

Then, there are the medical records.  And I'm going to tie this up with a nice neat little bow.  Those medical records are HIS records of his care.  They were supposed to be at the GI doctor's office on Monday afternoon.  Naturally, they never arrived.  I wasted three hours the following day to make sure the records were sent to the GI doctor and the endocrinologist.  And someone in charge of complaints got involved and got an overview of what I've shared here.  They began trying to reach me when I began getting noisy on twitter.  Finally, I was emailed by someone high in the health system.  I responded to the email by sharing that I would be incorporating all of my experiences into a presentation of "What Not To Do When Treating A Hospital Patient."  It was pretty cool that I had the link to that Influential ePatients to include in my email.

Addition to original post. As I was sitting at P4C meeting (see below), this was tweeted out. The cartoon attached depicts precisely what I've described here. Needs no explanation.

Patient-Centered Care - New cartoon with @sacjai #quality #healthcare #cartoon pic.twitter.com/bBj0ixq4WU
— Matthew Hayward (@HCareThoughts) November 13, 2014

I've since received at least three calls from the hospital.  I've returned none.  Instead, I'm at the annual Partnering for Cures Meeting in NYC.  Where patients are treated with respect, are looked upon as equal partners in the decision making process, are incorporated into risk/benefit decision making discussions, are encouraged to be citizen scientists.  Yes, I'm right where I need to be.

And I almost didn't make it.  You see, the discharge from the ICU was on November 1st.  We would up back in the emergency room on Saturday night when the pain was familiar and escalating.  Fortunately, it was a different hospital and most fortunately, they got the pain under control quickly, dialed the diet back to liquids for two days and I'll be a ten minute car ride away should I need to get up in someone's face.  Except, if that happens, I'm dragging a few of the Partnering For Cures people with me.

On twitter, follow the hashtag.  #P4C2014 ...  There are three sessions running simultaneously.  Kills me every time.  At least three of the slots, I NEED to be in every session.  Have we figured out how to clone yet?

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