Pity the poor nursing home resident-- especially at Wingate/Springfield

I wrote about my friend's trials and tribulations at Baystate a few weeks ago, and how he wound up with a colostomy when he'd been admitted for a broken clavicle and ribs. (!)

He did, eventually, get transferred to a Wingate Healthcare facility on Bicentennial Highway in Springfield.  They kept him there nearly three weeks and then sent him home last Wednesday while he was in an extremely frail condition.  He lasted exactly two days, fell again, and is now back in Baystate.

I'm sure I don't know the half of what happened at Wingate, but I'll write what I do know.

There is no separate wing there for short stay patients; they're mixed in with people who will breathe their last breath in that facility.  My friend's roommate died while he was there.  Obviously it would be much more heartening to be housed with patients all of whom are working hard to go home.  Not all facilities are like this.

My friend is both diabetic and a vegetarian.  I presume they have a dietician on staff but the kitchen seemed not to know what to do with him.  Three meals in a row (minus breakfast) he received potatoes and a vegetable, five meals in a row he was served a grilled cheese sandwich.  After the third meal, I told him to insist that the kitchen at least add a vegetable.

Apparently they preferred to control his diabetes through insulin rather than diet and insulin.  I was visiting one afternoon when a nurse took a sugar reading and it was high-- 220.  He returned with an injection of insulin.

The physical therapy department seemed to be a well-functioning unit.  The therapists I met were kind but not wimpy.  They pushed my friend to help him regain his strength.

But they failed to properly train him in the full ramifications of having an ostomy, how to care for it, tips for changing the ostomy bag, or the fact that having an ostomy requires drinking extra liquid to avoid dehydration.  This lack of information beaame a crucial factor in why he wound up back at Baystate.

My friend had his blood drawn several times in three weeks, but apparently whatever lab the facility uses failed to recognize that my friend had an infection (later determined to be caused by a wound he was accidentally given in Baystate!) This became factor number two in his re-admittance.

Worse, when my friend went for a follow-up visit to his surgeon on Friday, just hours before he went back to Baystate, the surgeon was furious that Wingate had reduced my friend's pain medication to a level so low as to be ineffective.  He had also made it clear in written orders to Wingate that my friend was not to be discharged until he was truly able to care for himself, as he lives with his elderly mother.

I started out angry writing this but I'm ending up just sad. When people are sick they are the least able to be effective advocates for themselves, and not everyone has family and friends who also have the time and resources to fight for them.

I also have more to say about Baystate, but I think I'll save it until my friend is safely out of their care.

Battling with bears while smothered by lithium

Poor children four times more likely to be given anti-psychiatric drugs.

Yesterday when I went to visit my friend in the hospital, he had a new roommate-- a young, nice looking Puerto Rican man-- a boy, really.  His illness was not apparent but he seemed low-spirited.  Another addition to the setting was an aide who never left the room all the time I was there.

A few minutes after I arrived,  a young woman with earrings, high heels and a clipboard joined us and started  talking to the boy.

"HI!' she said in a chipper voice.  "I'm Jackie from Psych Services."

I tried not to listen but some words drifted over....Well, the doctors want to make sure you're not going to try to hurt yourself again......Now, what else do you take besides the lithium?

I told my friend I was going to get a coffee from the cafeteria and I'd be back.

Today when I visited my friend, I greeted the young man as well.  We had a different aide, a little chattier, who was trying to get him to order from the menu.

"I'm really not hungry," he said.  "If I was really trying to kill myself, I'd eat this food." He laughed.

Later, commenting on something he saw on television, he said, "I'd like to fight a shark. I'd like to give that a try.  And I'd like to fight a bear, and  a pack of wolves.  Not a stingray, though," he said, "they go straight for the heart."

I wondered if anybody in the psychiatric field had ever spent any time talking to this young man, or was it all drugs, drugs, drugs?   If I knew instantly he was talking about fighting his own demons, finding his own courage and, yes, risking his own life to do it, how could a more skilled  person have used this knowledge to engage him?

Recently the New York Times reported on a government study indicating that children receiving Medicaid-- that is, poor children-- were prescribed powerful anti-psychotic drugs at four times the rate of children who were privately insured.  Of course, it's cheaper for Medicaid to provide drugs than long-term therapy, although given the serious and sometime life-long side effects these drugs cause, it may be a penny-wise, pound-foolish steategy.  One doctor interviewed in the article suggested poverty may cause more mental illness.  Another doctor suggested that children on Medicaid are more likely to receive needed treatment because of higher out-of-pocket expenses than the privately insured.  If we accept that, then we have have to accept that it is appropriate for nearly five percent of all of our children to be medicated.

I've seen this push to medicate children for more than two decades.  I've talked to many mothers who have been told by their child's school administrators that they had to place their child on medication in order for the child to stay in school.  Some mothers fight it and some give in with relief.  Their children get fat, and dopey, and are even more likely to have trouble making friends if they had that trouble before.  Some parents actively seek to get their kids medicated, because they've been taught to believe unreservedly in the magic of pills and  they just don't know what else to do.

Does poverty create mental stress for families and children ?  Damn right!  If you're a kid and you know that you might have to move for the third time in two years because your folks are behind in the rent, you're affected.  If you have to sleep on the couch at night because your apartment is short a bedroom, you're affected.  If there's no quiet place to do homework and your grades start going down, you're affected.  The life around you and eventually your own life may be riddled with economic, emotional and intellectual malnutrition.  You may be tangled like a fly in a spiderweb with myriad institutions meant to help or punish you.  You might actually be in need of counseling and guidance and maybe, just maybe, some medication.  Or you might be just fine.

By pathologizing poverty, society lets itself off the hook.  Why tackle the structural issues when anti-psychotics, prison, addiction, family services and television can accomplish so much?

Tonight, belatedly, whoever is in charge decided the young man deserved some privacy and my friend was moved to a room two doors down.  Will he actually be better off alone?  I don't know.  I'm a bit uncomfortable myself that I'm invading his privacy by telling his story so that I can tell this larger story.  But I wish him well.

Image from smiteme's photostream at Flickr.

The Joy of Baystate

I have a very dear friend who's been at Baystate Medical Center since the week before Christmas after taking a tumble down some stairs.  He has some underlying  health conditions and since entering Baystate he's been in a downward spiral.

Last Wednesday, when I called his room to speak to him, I was told he was in the emergency room!  Apparently Baystate had attempted to transfer him to Wingate nursing home for rehabilitative therapy, but Wingate sent him back because he hadn't moved his bowels in the six days he'd been hospitalized and they said they couldn't deal with it.  By telling the patient advocate I reached by phone that my friend had been inappropriately transfered to Wingate and I wanted to find out what was happening with him (and making sure the patient advocate checked with my friend to make sure I could have access to information),  I managed to get a callback from the head of the emergency room saying, No, he was inappropriately refused by Wingate, and that he'd spoken to  the administrator there and my friend was going to be sent back-- as soon as an ambulance was available, an unpredictable number of hours away.

Shortly after, apparently the Baystate doctors changed their minds and decided they should deal with my friend's situation in-house.  Of course his room had been given away, and he spent a miserable day in the emergency room before he could be re-admitted. After two fruitless days of enemas, laxatives and a colonoscopy, they determined that he had a bowel perforation.  (Before the treatments?  Because of the treatments?) He had emergency surgery Christmas Eve and has been fighting for his life ever since.

I hadn't meant to write all this, but it's the context for a minor thing, a very minor thing, that pushed me over the edge to anger today-- even though I didn't show it.

I went to visit my friend and found him in restraints because he's been having terrible hallucinations (the medication, the nurse told me) and had tried to remove his central line and colostomy bag.  (He's not terribly aware of what's been happening to him, but told me he hallucinated he'd been mutilated-- not far from the truth.)

Next to his bed is a dry erase board where the names of the nurse and assistants for the day are written down.  Near the bottom is the line "Expected Discharge Date" and someone had written "Not soon enough."  I called it to his nurse's attention, and we realized it was written in pen, probably by a former patient.  But I asked her to find a way to remove it lest my friend, who was constantly apologizing for any trouble he was causing,  see it and think it was directed toward him.

I know myself well enough to know that some of my anger toward Baystate, not just for my friend but also for my sister's and  my own experiences, (and I didn't write the half of it) is misdirected fear.  But why does it seem so impossible to Baystate to provide excellent medical care, excellent nursing, great supportive services and a dignified setting all at the same time?  At least one element and sometimes more has been missing every time.

Keep my friend in your prayers.

Those damn rich people...

Those damn rich people were in town today, giving a round of cheers to Bay State Medical Center for hiring a union-busting law firm and to Health New England for  its membership in America’s Health Insurance Plans (AHIP), the lobbying group trying to turn health care reform into a government subsidy for their profits. 

Carrying signs reading "Whatever happened to an apple a day?" and "Let them eat Advil," the Billionaires for Wealthfare went to offer their support at HNE's offices at One Monarch Place, Springfield.  That support was not appreciated, however. 

The billionaires describe themselves as " a grassroots network of health insurance CEOs, HMO lobbyists, talk-show hosts, and others profiting off of our broken health care system. We'll do whatever it takes to ensure another decade where your pain is our gain. After all, when it comes to health insurance, if we ain't broke, why fix it?"

Somehow the word got out about the billionaires' rally and counter-demonstrators  also turned up, urging passerbys  to call Congressman Richard Neal and urge him to honor  his April  24, 2006 promise to vote for Single Payer should it ever come to the floor of the House.  Well, the it has, and the time is now!

Go to http://www.house.gov/neal/write_neal.html or http://salsa.democracyinaction.org/o/307/t/9290/campaign.jsp?campaign_KEY=27743, or send a free eFax to Neal at http://www.1payer.net/faxapp/senders/add/cid:35.

Seriously, can we please get health care reform finished in this country so we can get on to other issues?

A patient's search for dignity at Baystate Medical Center

I just spent the last three days as a patient at Baystate Medical Center. Suffice it to say I will live. I don't fault the medical care offered there-- much of it is excellent. (Only one mistake-- I hope-- and one near-mistake in my case.) But in the eleven and a half hours it took to me to get from the emergency room to a room of my own, I witnessed or experienced many different varieties of injury to the human spirit.
My first stop is a chair right next to the security guards' office directly opposite the ambulance entrance. The guard on duty is a hefty blonde named that someone calls Kel.. Ambulance services and fire and police departments from surrounding communities pass through those doors and there is much colleagial mingling.
A young woman comes through the ambulance entrance accompanied by a police officer. She's been crying very hard, her face is red and she has a tissue pressed to her eyes.
The guard says to two colleagues, "Bet she's headed for the crisis unit. 'I hate men, I hate men!'" she mimics.
I can't believe what I'm hearing.
Seeing as she's standing right next to me, I say, in a low voice, because it is not my intent to embarrass her, "You shouldn't talk like that in front of other patients." She looks at me and glowers, says nothing, and goes back in her room, where two of her colleagues are hanging. Voices grow hushed.
A minute later one of the men comes out, leans against the doorjam, and says, to no one in particular, "Well, I thought it was funny."

Three hours later I am finally sharing a chilly examining room with two other people, one of them a frail-looking elderly man who had already been hooked to an IV. He is sitting on the side of his cot, trying to put on his shirt but getting tangled in the process. (It's impossible; I know, I've tried it.)
A nurse comes in and in a teeny tiny high voice she says to him, vowels rounded, words cadenced, "Oh, Mr. Wilson, look what you've done, now just lay right back and let me untangle you." She's talking to him like a baby!
"Laying back has nothing to do with it!" he snaps.
"You're right!" I call over. Of course she just wants him to lie down. Later he and I talk and he tells me he's an engineer.
"Retired?" I say.
Yes."
"My dad was a civil engineer."
"Too much tromping around outside for me," he says.
We chat until someone comes to move him to a room. I find him to be a rational, intelligent adult who just happens to be 82 years old.

Finally, at 12:30 a.m., I am moved to a room in the Springfield building. The woman in the next bed has her TV on! And loud! I'm going to myself, Oh, for Christ's sake, I'm exhausted and this is ridiculous. I ask the woman, who is non-English-speaking, to please turn down her TV-- using gestures and pointing. She looks at me blankly.
I say to the TA, "Can you please ask her to turn down her TV? Isn't there any kind of a curfew about how late TVs can be on?"
She looks at me blankly.
"People have a right to have their TVs on," she says.
"And how does that compare to people's right to have peace and quiet in a hospital?" I ask.
"Why don't you just climb into bed, honey, and I'll get you a sleeping pill?"
That does it.
"Don't call me honey!" I snap, knowing I'm about to be labeled the bitch of the ward. But at that point I just don't give a damn.

The next day I write out a note and tape it to the end of my bed.
"Please don't call me 'Honey' 'Sweetie' or 'Cutie.' Please call me by my name or leave out the name altogether."
I know this form of address doesn't bother a lot of people-- maybe, in fact, in this cold, cold world, some people are even grateful-- but to me when medical personnel address a patient in this way it simply increases the power imbalance between them, and patients are disempowered enough as it is.

How anyone gets well in a hospital is a small miracle.

My new campaign

My sister was admitted to Baystate Medical last night through the emergency room (always a zoo).
I left her at 2 am. when I knew she would be admitted and started calling at 7 am. this morning to try to find out how she is. The hospital nearly gave me a heart attack twice when they transfered me to Cardiac ICU and they couldn't find her; we went around several times before I finally got to the right place. She's OK for now; tests to come.

Meanwhile, while I am on hold for many minutes, I am subjected to a string quartet of extremely staccato nature played very quickly. I should recognize the piece but can't. It might be good housework music, but certainly nothing that should be played to anxious relatives.

Once I had to have an MRI and the technician asked what kind of music I wanted in my headphones. I told her classical-- and suddenly Bach's Concerto in D Minor (I think) thundered through my ears. It's the kind of piece you use as music in productions like Phantom of the Opera. DUM da da da DUM DUM. "Stop!" I shouted.

So somebody who knows that they're doing at Bay State needs to change their music.

I think what I am experiencing is displacement of anxiety.