How to Lose a Grateful Patient* in Four Days

*In the world of hospital fundraising, grateful patients are your most ardent supporters.  It's a super good idea to find them and to keep them.

I've been chewing on this blog post for a bit.  Timing is everything, as they say.  I wonder how often they are right.  Someone write that down and do a dissertation on it.

Anyhoo.

As I did not simply elude to in my previous post, Dora had major surgery one week ago.  Since that morning we have been on some insane rollercoaster ride.  Tower of Terror.  Stop the ride, I want to get off.

It started out fine and dandy.  The original surgeon we met with referred us to one of the world's top specialists.  When a surgeon says 'If my wife needed this surgery, this is who I'd take her to', you listen.  And then you make an appointment.  And then two years later after the patient of record determines this surgery is a must do, you book it.  

One week ago we walked through the shiny platinum doors of Mass General Hospital.  To be blunt, we were terrified.  This was a major surgery involving two surgical sites, eight hours in the OR and seven days in the hospital, not to mention the likely need for a stay at a rehab center.

Though the MGH standard is no loved ones in the pre-op space, they made an exception for us.  Score 1 for patient-centered care.  When anxiety persisted, they suggested I put on a bunny suit and go into the OR with them until Dora was safely snoozing.  Score 11,000 for patient-centered care.  At that point I was madly in love with MGH, her surgical team and the anesthesiologists managing her case.  I even tweeted about it.  (Really!)

Some number of hours later her surgeon waltzes into the drab family waiting area and tells us he's done, it went well, and we'll be able to see her within a couple of hours.  In reality, it was well over three hours before we could see her as they couldn't get her pain under control.  Once we finally could see her she was in the peaceful space of the PACU with classical music piped in and deer waltzing across the fields (not being chased by a tiger or anything).

The most lovely Irish nurse was managing her care and she was just so delightful I felt nothing but confident and was becoming even MORE of a grateful patient.

And then the IRON CURTAIN came crashing down.

Sometime in the middle of the night we were relocated to a really old, (really, really, really old) building.  Fluorescent lights beamed from the low ceilings, chaos radiated through the halls.  A far cry from the sweet dancing deer upstairs.  Dora was moved into a shared room and the door was, quite literally, slammed in my face.  From behind that door was the agony of someone whose pain was barely under control being moved without a thought to her being torn open on both sides of her body.  I should have known then.

Her roommate was someone who had fallen that day and broken her foot.  She and her daughter were having a pizza party at midnight in the room.  My wife had just had major surgery.  This was not a match made in heaven.

At some point in the middle of the night a nurse asked me if I was aware that I was not allowed to spend the night.  This, mind you, in direct conflict to what one of the PACU doctors had said, seeing that Dora couldn't even reach for a sip of water when she was thirsty.  Oh, said the nurse, it's not my decision, but my boss's.  And so in the middle of the night I was forced to leave her behind.  Not able to get a drink, not able to see the face of someone she loved and would keep her safe.  Every time she came to during those first 24 hours her body would tense up until she found me.  Every time.  And they took that away in those dark midnight hours.  She asked for broth and was given soup, though she wasn't allowed to eat the soup.  She knew that from past surgeries, but apparently her nurse didn't give a thought to that.  I drained the broth out and asked for more.  'That's the last one on the floor, and it's 12:30, we're not getting more tonight.'

A resident came down sometime around 1AM and I pulled him outside and asked him to have her moved.  The raucous party on the other side of the privacy curtain was not conducive to healing.  He agreed and by the next morning she was moved to a room with a nice window view and a wonderfully delightful roommate.

For a moment, I again had hope that this experience would end well.  That hope was short-lived as we experienced inconsistent, uncommunicative care.  No one, it seemed, was driving the bus.  She had two nice nurses and we were grateful for their participation in her care, but they were little more than puppets being controlled by the invisible puppeteer.  Her other nurses were average, at best, and her final nurse made decisions consistent with someone who made a terrible career choice.

Three days post having her body rebuilt, D was forcing her agonized body upright and through the halls.  A jovial resident approached 'Looks like you are ready to go home today.'  Um.  Today is day three, we were told to expect no less than 6-7 days in the hospital.

Guess MGH needed to open a bed.  We fought it and refused to leave.  We complained to anyone who would listen.  And then the next day they showed up with her walking papers.  Since she was walking, they said, she could be discharged.  We questioned them, a lot.  We questioned their reasoning, asked to see the check-list of milestones she had accomplished that meant she was ready to go home.  (We never saw that list.)  We asked about swelling and the potential for infection due to past issues.  Resident God brushed us off.  No (idiot peon non-doctor), that is not a brewing infection, it is your sutures.  

We poked and we prodded and then they fell silent.  Her discharge papers were tossed onto her table, Nurse Ratchet argued that it wasn't her fault that she had given the pain meds nearly one hour late two times, and then she disappeared.  And no one came back.  No one walked us through the paperwork and the medications.   We're lucky they had a volunteer wheel her down to the street, at one point I expected them to just release the brake and open a window.

And so home we came.  Earlier than expected, fully aware it was a business decision on the hospital's part to free up a bed and make more money.  A patient with barely managed pain, no instructions on her after care.  We called the day after eviction to ask questions about the medications.  No one called back.  We called again.  We were told we would not be called back.  

And then the infection burst.

Resident God argued on the phone, we did not force you out (what does one call discharge papers dated 7/29?); it is not infected, and on, and on, and on.

And again we experienced deaf ears.  Hours of waiting.  Unwillingness to own what we said was there two days ago.  The epitome of the brush-off.

Over the past week we had an inside look at how broken our healthcare system is.  No longer do they want you to be well enough to go home safely.  You are a number in a bed.  Hospitals are reimbursed differently (read: less money) for patients staying past 4 days.

I remain stunned at our experience.  Some have said to me we should just be happy that the surgery (appears) to have worked.  And in that sense, of course we are.  But my wife is now suffering from a massive wound infection that we had to force them to diagnose.  What good is a straight back if your body succumbs to infection?

And so here we are, the ungrateful, awful family who is pushing for good, thoughtful, careful treatment of the whole patient.  Ours is a screwed up system focused only on pleasing the insurance companies, people be damned.

I sit here as my wife sleeps in the hospital bed we begged them to order so that she could actually get herself in and out of bed, wondering if we made the right choice.  Thinking about the sham of it all.  The beautiful lobbies, the overstaffed entrances, the state-of-the-art outpatient building draped in a harpist's music.  Clinic offices populated by brand name surgeons, the best of the best.  And then it's all downhill.  You come in, they cut, they fix, they pass you off, and whatever will be will be.  

People be damned.