PATIENT SAFETY COFFEE BREAK HEADS UP

CT Center for patient safety announcement in my e-mail


Participate in the national Twitter chat on Tuesday March 14th at 1:00pm entitled: Patient Safety: What Patients Want (and Need) to Know.  Join Tuesday's Twitter chat with  #PSAW17chat.  The Connecticut Center for Patient Safety uses the Twitter ID @CTPatientSafety.

IF I BOUGHT A HOSPITAL, Part 2?

Med Page a few weeks ago had a link to a PLOS article about health ideas from the 1865's City of Health.  Some of it seemed right up there with leeches in my no longer relevant category.

But one idea seemed to be one of those health "duhs" that my experience finds ignored now, at least in the US: A wide door that allows patient beds to be rolled outside on pleasant days!  I wanted to add this to my   If I Bought A Hospital list.  It would seem like a step up from those window shades blocked by chairs in one hospital.  No one had time to put shades up and down, or even thought about it.  

Every day now I read somewhere about evidence of faster healing when patients are exposed to nature, or at least nature views.  (Yet one hospital designer wrote about the need for hair dryers!)

Reality is creeping in.  The world is more crowded now, with no outdoor places for benches and wheelchairs, much less beds.  Hospitals are cutting caregiving staff in some places.  Twelve hour shifts are leaving caregivers exhausted.  

 If it's true that millions more people are insured for the first time now, (not just switching companies)  there will be an influx of hospital patients -- more crowding and less time for care?  Certainly no time to roll beds down from the 14th floor.  And some will wait a long time even to be in the hospital, because they can't get in to see a capable doctor in the predicted doctor shortage.  

But even before that, we've had another variable:  lawyers. Imagine the legal mind picturing the patient forgotten outdoors for eight hours or so. (Even I can imagine that, I confess.)  And there's the same legal mind that put those sirens in hospital beds in California, to warn the surrounding neighborhood that a patient might be getting out of bed.  Lawyers do have a voice in what is spent and whether rolling beds outside is dangerous not just for patients but for the hospital.

Why do you care?  I hope you care because money is being spent on lavish reception areas rather than lavish patient gardens.  And as I've griped about before, money is being spent on resort-worthy visitors' areas, on impressive parking garages, and on gardens patients never visit.  I hope you care because a dose of nature may get you home faster than a hair dryer. 

Regardless of words like "payer" the patient is a customer.  In the vast majority of cases, we are in that hospital bed because we went without something to pay insurance premiums.  And we will go without something else to pay what insurance doesn't cover.  Top level administrators, however, won't have to do without much of anything, even after taxes.  

I welcome your comments.

Be well..

HOSPITALS versus The healing power of the familiar

A few days ago, I found Patricia Moore's RIT lecture on YouTube.  Everything she said was what I had hoped to hear somewhere.  But I came away with two pictures in my mind -- pictures I wish would revolutionize the world of the patient experience.

The first was a woman, not young,  walking slowly, slowly up a hundred steps to a temple.  We learn that there is an alternate pathway, easier.  Why not use it?  Her daughter has said:  She's always done it that way.

The other picture will probably stay with me forever.  A small Asian woman asleep in a a healing facility, not on an institutional bed, but on her own mat on the floor.  Her piece of home.

I'm embarrassed by my initial reaction to seeing her sleeping on the floor. Embarrassed because my reaction is exactly the mentality that keeps hospitals so institutional!  Oh, no, the poor woman! My western mind was full of stereotypes.  She must be very poor, she must be in a poor country. It must be too hard down there.  It must be dirty and cold on the floor!   And then Dr. Moore set us straight:  The woman has been allowed to sleep where she wants to, on what she wants to.

Isn't that freedom?  She seemed peaceful.  Don't we read and talk about getting home from a trip and the joy of home in our own bed? But with very few exceptions, even the richest of us can't take our own bed, or much of anything of our own, to the hospital.  

 Perhaps no matter how sick you've been, you've always had a good bed in the hospital.  After spine surgery, I had a hospital bed so saggy that I could not lie on my side without holding onto the bed rail to keep from rolling back.  

 Not only our beds, but many familiar things are important to give us a feeling of adulthood, of capability,  of where we are.  I packed for my daily needs when I went to the three hospitals for my spine fusion saga.  Most of those things, I never saw again until I went home. I couldn't reach them, and no one knew where they'd been put.  Hospitals rely on our friends and relatives to sort it out.  Yet many cancer patients travel great distance to be treated in  hospitals their friends and relatives can't always travel to. 

Patients are entitled to some comfort. And there is no comfort like the comfort of the familiar.  But except for being cleaner, a hospital bed gives us the same familiarity as a bed in a homeless shelter.
  
People on the web write daily about what someone thinks are major problems hospitals have to solve.  Yet they may be wide of the mark.  Time and again, I read about diagnoses leaving patients overwhelmed and distracted.  

I believe a major problem hospitals have to solve is allowing patients to feel  more self-determining, less helpless, less lost in a strange land.

TO HOSPITALS: STOP! Step away from the demo. Step away from the drawing board

Yesterday I read an article titled something like How to Build a Smart Hospital.  I flinched. But I peeked.  There was an awful lot about electronics. I felt my blood pressure rise.  I was sure the article was written by someone under 55 years old.  

I remembered, this morning, that night in spine rehab when the nurse could not figure out the medicine program or what to do about my one med that disappeared from the computer. I remembered registering there for surgery, sitting in pain for an hour and a half while a nurse tried to get a few sentences into the hospital registration program.

I remembered last week complaining about the new Windows, and the smart professional woman next to me telling me that she had given  up on its touch screen all together.  

And a few days ago, trying to find the main entrance to a hospital, then learning the next day that the main entrance was the one with the Maternity sign.  And never finding an information desk.  

Don't give us hospitals that are smarter than we are!  Shut down the board meeting and ASK A PATIENT whether he needs a kiosk to get admitted, when he thinks his test result will be: "six months to live."

And if you must have electronics, pick the ones that anyone can use, even the substitute nurse from the other department.  Even me, when I am scared or in pain.  

Pick things like the pager that helps us move about, including going to the bathroom, while waiting for our turn to get good news or bad. 

A patient needs a kind, calm, competent person with the needle, competent with the space age machine, with the deadly chemo.  A patient does NOT need a nurse or resident or surgeon who is still learning the new electronics this morning!   

Spend the money to get kind intelligent caregivers.  Then spend money on taking time to train them until they know the new gadgets better than they know their own faces in the mirror. Check on them until you know they know.  Until you see them work these new features.  

And don't give the patient any electronics he doesn't want and can't use. The patient already has enough to do just figuring out the "smart" call buttons with the cute, microscopic pictures on them.

Put a sign in the board room that says:  

No patient should need training to use this hospital

Send the same sign to your architect and hospital designer.  

TONGUE - TIED IN THE HOSPITAL

When a doctor writes about an experience in the hospital as a patient, I love it. Somebody understands how the patient feels!  And yet my heart may go out to him, especially because his illness and treatment may be a lot worse than my experience.

But when he writes that he let the hospital go ahead without questioning a test he thought was wrong, premature, or dangerous for himself ( or for a relative he was taking care of) that really scares me.   

When a doctor does speak up, does refuse a test, does ask why or why now he or she sets an example for the rest of us.  An example we  may need when we're hesitant or afraid or too sick and tired to say No.

But when it's my experience, wouldn't it be fun to imagine a certain unpleasant doctor in the hospital as a patient?  My inner three-year-old would say, "See!  It's not so funny, is it?  How do you like it!"  Instead I imagine myself reading the riot act to that doctor or unseen administrator.  

I'm not a doctor, my professional relationships aren't damaged if I speak up, ask questions, insist on an explanation, or just plain refuse.  In fact, in the first spine hospital, I flatly refused an MRI until my own doctor okayed it.  But in the next hospital, I didn't refuse the pain pill the physical therapist insisted on, even though I knew it would make me nauseous.

Why am I telling this now?  Because maybe you, too, ignored one of those patient feedback questionnaires like the one teetering on top of my files, postponed, but not quite forgotten.

Some of the questions on this one are tough. I've read that some feedback can result in the wrong person being punished, and I don't want the responsibility. I could suggest instead of shooting from the hip. But I need to speak. A doctor may be an expert but still leave me feeling alone--that nobody has my back. A doctor may be revered by his colleagues but never warn me of what's coming, may not have the experience to prepare a patient for what seems a small thing, and might be a small thing to a different patient. 

I don't have to fill out the little circles, I can write down what I think (in block letters like a criminal)  Remember, the doctor won't see it. 

I will do it today.  And try to leave my unpleasant memories in the mailbox with it.



















See the file Ask a patient, which has a sample bill

LUMPECTOMY - THE SEQUEL . . . Stories old and new

If I've told part of this before, please forgive me.  The "dancing doctor's" brave video has opened Pandora's box of medical memories and things to be thankful for.

In the 70s, in a then-small California city, my doctor got the idea that there might or might not be a lump in my right breast.   The next thing I remember is sitting in a hard chair in the middle of a large, chilly room, naked from the waist up.  The surgeon was in the room with me; so were a number of male medical students or interns or whoever. If there was a female nurse around, I don't remember her at all.

 I was fairly miserable during the long time it took for almost everyone to palpate my breast and discuss my plight, if there even was a plight.  All that poking and puzzling; no findings.

Although I don't know the standard of care for breast diagnosis in the 70s, the surgeon decided on a combination surgical biopsy and possible mammography method that I now understand had been developed at the beginning of the century at Mayo Clinic.

In this approach, the patient was put under sedation.  The suspicious area was excised and sent to pathology for frozen section -i.e. slicing it up paper thin.  If the pathologists found malignancy, the breast and possibly near-by lymph nodes were removed.  Finally the patient would wake to find out if she still had her breast.

I must have put myself into a sort of pre-surgery denial fog.  My husband, who later became my ex-husband, made a brief, awkward attempt to talk about outcomes.  I was not at all clear on how much to tell my little, grade-school age daughters, and still don't remember what I did tell them.

Finally, I put on my red blouse and was driven off to the hospital.  I should probably inject here that I didn't really like the surgeon.  In those days, women made remarks like "He's not much for bedside manner, but he's good."  Later, he became a client of mine, and we still did not become friends.

When I finally woke, I believe for some reason one of my in-laws was in the room--is that possible?   (We were not huggy in-laws.)  A nurse stuck her head in, said "benign," and vanished.  Someone asked me what I wanted to eat.  There was no sign of the surgeon.   By the time my green beans arrived, I was still too groggy eat them, and went back to sleep instead of enjoying the fact that my husband was in the room.

After so many hours under the anesthesia of the day, I was a little dopey for a while.  Even weeks later I would suddenly get tired when we went for a walk.  Were there pain pills?  How long did I stay in the hospital?  There must have been pain, since the nipple had been removed for the exploration.   The good news is that the scar has been almost unnoticeable.

Just a very few years ago, one of my daughters told me she and her sister had been sure I would die in the hospital.  I wonder if anyone tried to comfort them when I wasn't around.

***

Through the multi-step DCIS diagnosis, the old scar on that nipple wore a cute little sticker like a wreath, to keep it from looking like a problem on film.

The good news:  I have a surgeon I like, who is as kind and caring as the best family doctor, and who also did a great job removing the affected area for analysis. I am different now than in the 70s; I would not have let him do the procedure if I hadn't trusted and liked him.  

And lumpectomy let me avoid, as many women can now, the long and dangerous surgery to remove a whole breast.

LUMPECTOMY - THE SEQUEL . . . Famous decisions--the other side of the story

I've read plenty about a surgeon and a film superstar and their double mastectomies. I know the surgeon had been diagnosed with breast cancer; we've all heard the superstar's reason.    I don't mean to downplay what they've gone through, but I also knew they could expect world-class care.  Now I read that their stories have started a clamor for voluntary double mastectomies.

I was thinking tonite (Thursday) about the dangers of what they have gone through, as well as the benefits.

And I have often thought before about why lumpectomy is simply called "breast preservation" or similar names.  To me, lumpectomy, when it's the standard of care, is the way to avoid an incredible amount of danger of infection, not to mention pain, dangers of major surgery, and lengthy, difficult convalescence.   I've shuddered at the stories:  frantic daughters of mastectomy patients tracking down nurses, and insisting, "Give Mom her shot.  Now!"   I'm glad I've been spared for now from being that suffering mom.

I had nothing to say with any authority about this question, so took a break, went to KevinMD, and lucked into an article by

Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries.  

I clicked The Crab Diaries, and found her cautions on that very subject - possible reasons not to choose a double mastectomy and when or why not.  She is a wonderful storyteller and you may want to read.that January 2 post, Primum non Nocere..

My suspicions are confirmed, and there are even more reasons to think very, very carefully about voluntary double mastectomy for yourself or someone you love.

LUMPECTOMY FOR BEGINNERS . . . in the radiation room

If your DCIS is low grade and you are an older patient, you may want to go to http://www.medpagetoday.com and read  some of the  peer-reviewed article on radiation findings.

Yesterday, after I agreed to radiation, they gave me a gown and took me to the treatment room.  I saw a shiny black, low bench, definitely suitable for an upscale bus stop.  They settled me on it with a fresh blanket, and positioned my arms above my shoulders; my tendinitis was not happy about this.  Overhead was a lighted mural of branches and colored leaves.

As my girlfriend predicted, there was a strange, lumpy pad under my upper torso.  This takes a specific mold of where my shoulders, torso, and arms will be for every treatment.  

I mentioned my sinus problems, and they smilingly said, If you have to cough, cough upward.  They told me if the cough moved me too much, the machine would stop.

Then the tattoos--more road signs for the radiation.  Just three tiny needle jabs with some sort of permanent ink.  This keeps the marks from coming off in the shower.  

At some points, the bench rolled me back with my breast area under a metal arch.  Apparently this is where the radiation comes from.  It is perhaps less than a foot thick, like half a big, skinny donut, so I was not really enclosed.  Note to self: not claustrophobic.  

The whole session was comfortable and non-scary, and the staff were kind, happy, pleasant.

After I got home, I found a paper in my folder saying that the first visit Monday would be a half hour, and if I wasn't comfortable in the position, I should take a Tylenol an hour ahead.