We need to reform nursing homes before we wind up incarcerated in one of these gulags / by sylvia kronstadt
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|Sun, 11-03-2013 - 4:19am|
Nursing-Home Netherworld: Putrefaction, pain and poop
I wretched. I couldn't help it. I wretched again. David, I'm sorry! He had asked me to remove his diaper and clean up the mess in his nursing-home bed. Feces extended from his mid-back, down his buttocks, to his knees. It was still pouring out and piling up, surge after steaming surge of porridge-textured poop. It was a nightmare, like "The Sorcerer's Apprentice."
"Don't call anyone," David said. "I think they're mad that I keep doing this."
I was up to my wrists in it, but it was all so slippery, and he is so massive, that I couldn't get the soiled diaper or drenched mattress protector moved, in order to wash him.
I said, "David, I'll be right back."
Then I went into the bathroom and vomited. I puked my brains out, but I did it quietly. He never knew. I felt ashamed, but there was no holding it back.
I pulled myself together and returned to David's side with a glass of cold water and a straw (his throat was so parched he could hardly speak or breathe). I also brought some latex gloves and a stack of dry cotton towels so I could plunge in and take care of business.
I was hot, nauseated and terrified. The smell wasn't merely malodorous. It seemed toxic.
(As old as I am, I had never changed a diaper before. Now I realized that my avoidance maneuvers had been worth the effort.)
David, who is a very accomplished and articulate 75 years old, told me he hadn't been able to eat anything for days. So what was this deluge of golden-brown material that was pouring out of him? It seemed as if his body had digested his internal organs, and he was losing everything. Tears were streaming down his cheeks.
I honestly thought he might be dying. He seemed to be losing consciousness.
"Please don't leave me," he murmured. But I had to.
I rushed to the nurse's station. She said he had diarrhea -- "watery stools" as she described them -- because he had insisted on being administered Milk of Magnesia the night before. I said they weren't watery, and it was not diarrhea. Something was wrong. On top of that, he had never been incontinent before, and now he had lost control completely.
"We just don't have the staff to come running every time someone presses a call button," the nurse said. "People have to be patient."
PATIENT PATIENTS FESTERING IN FECES
This facility costs the equivalent of $133,000 annually for short-term stays (the basic daily room rate, excluding many necessary services, is $362). Longer-term care costs $80,000 per year. But residents have to "be patient" as they sink deeper and deeper into their own excrement. And this has been regarded as one of the better nursing homes in the area, although its reputation is in decline.
I demanded that an aide be sent to David's room to change his sheets and clean him thoroughly. I hadn't been able to turn him over (he weighs almost 300 pounds), but I could see that he had a fiery rash between his buttocks and down onto his testicles -- probably an overgrowth called candida -- that needed to be treated with an anti-fungal ointment, and possibly with oral Diflucan as well. Someone should have noticed this and addressed it long before now.
"Oh, a doctor has to prescribe medicine for that, and he's not here," she said.
"Then bring us some zinc oxide, goddammit!" I yelled, as I ran back to David's room. A barrier cream would be better than nothing.
THE DOCTOR WON'T SEE YOU NOW -- OR EVER!
I asked the nurse to have the doctor call me. He spends only a few irregular hours a week at the facility. But she said he would refuse to speak to me due to federal privacy regulations.
I found his name among the "Welcome!" materials the nursing home had provided when David was delivered to his room (in lieu of a visit from an actual person to welcome him), and called him myself.
I told the doctor that David needed medical attention, that he was afraid and bewildered about what was happening to him, and that he had been crying when I left.
"I've talked to David before, and he seems fine," the doctor said cooly. "It sounds to me like you're the one who's 'afraid and bewildered.' Maybe you should just let us do our jobs."
Among the other information I had found in the thick folder (who reads this stuff?) that constituted the facility's "Welcome!" to new residents, was a pamphlet listing patients' "rights and responsibilities."
Maybe residents have a "responsibility" not to shit their pants. (The average cost of incontinence care in nursing homes is 15 percent of the budget. That doesn't include supplies or laundry. According to the Journal of the American Medical Association, half of nursing home residents have urinary incontinence; some 64 percent suffer from fecal incontinence. These tend to be patients with cognitive impairment, although David's cognition is outstanding.)
CAREGIVERS CAN ONLY GIVE SO MUCH
Some 90 percent of nursing homes nationwide have been deemed to have inadequate staffing levels, according to a 2010 congressional subcommittee report (56 percent were inadequate just 10 years ago, the U.S. Department of Health and Human Services reported).
Inadequate staffing is presumably what caused David's needs to be ignored. He had pressed his call button numerous times over a three-hour period before I arrived. No one ever came. He took it personally, thinking they must regard him as too needy.
Having spent time with four people in nursing homes in the past two years, I have learned that his plight was not unusual.
It is alarming for me to realize that the facilities I have visited are substantially better than most, according to data I accessed through the Medicare database.
Several years ago, my uncle spent a number of weeks in this same nursing home, which at that time was regarded as one of the best in the state.
As soon as I walked in the door this past summer, I sensed that it had become a different place. The family-owned facility seemed palpably superior back then, at least from my limited perspective as a frequent visitor. Perhaps the profit motive wasn't as intense, or maybe the institution had found other strategies (fraudulent billing methods, for example, are the most common tactic) to get rich. (A report by federal health care inspectors in November 2012 said the U.S. nursing home industry overbills Medicare $1.5 billion a year for treatments patients don’t need or never receive, according to Bloomberg News.)
I learned that this nursing home had been bought in 2009 -- along with another facility in a nearby city -- by a two-man company that intends to amass a "chain" of nursing homes (They declined to comment for this article). Eduro Health Care, owned by Brian Ramos and Michael Bewsey, is an offshoot of Meridian Peak Holdings, LLC, which is a real-estate firm.
"We really lost a gem when they bought it," a state official told me. "They're letting it go to hell while they rake in the money."
As I mentioned in a previous post, nursing homes and nursing-home chains across the country are being amassed by investment firms that have no interest or expertise in health care. They are bottom-line people, each of whom oversees tens of thousands of "beds," which is the term they use instead of "patient."
In 2012, they continued to have "surging revenues, strong profits, and expansion through acquisitions," said Brian Lee, Executive Director of Families for Better Care.
Nevertheless, 37 percent were laying off direct care workers, 74 percent were changing wage rates, including reducing or freezing wages, and 48 percent plan to cut benefits, according to a study by Avalere Health LLC.
LOVELY MEMORIES OF LAUGHING GIRLS
They were lovely, compassionate young ladies.
AT YOUR SERVICE, IN AN INSTANT
All I had to do was step into the hallway, and someone would promptly rush over to see what we needed.
My uncle suffered from fecal incontinence, and whenever I tried to apologize for the unpleasantness this was inflicting on the aides, they waved my concern away, saying, “It is no problem. We are used to it. It is not his fault. We love your tio amabale.”
They were the ones who were "amabale" (sweet)!
The young aide from Ethiopia was especially interesting.
This puts them well below the poverty line. Many of them work 12-hour shifts. Others race to a second job. It is an appalling situation.
Last May, I was in the same facility early one morning to deliver some fruit to an old family friend.
I discovered inadvertently that David was there: The facility, in violation of federal privacy rules, had left a list of patients in open view at the nursing station. When I realized that David -- whom I hadn't seen in several years -- was there, I immediately went to his room and found him in the terrible condition I described above.
In the years since I had been here to visit my uncle, the nursing home had lost its top-notch rating, and there was a palpable difference in the atmosphere. Because there are fewer aides now, they are constantly rushing around, with visible perspiration on their faces and hair. No time to catch their breath, much less to interact with patients.
STRANGLING IN THE DARK
For the next several weeks, I visited David and my female friend early every morning, to see how they were doing. Each time I entered David's room, I witnessed a haunting scene: I found him lying on his back in the semi-darkness, with his eyes and mouth wide open like a starving bird, making a strangling noise.
He was like a hog in a pen, barely able to move. He couldn't reach his mug of water, and his throat was so parched, he couldn't speak.
He had become so weak that even if he could have reached his water, he couldn't lift the insulated 32-ounce container.
And he couldn't reach the bed's controls so he could raise his head in order to drink without choking. His lips were cracked and scabbed; the Chapstick I brought for him had been put away, into a drawer.
His breathing was terribly impaired. His diaper, inevitably, was overflowing. He seemed positively devastated by what he was enduring in there by himself. He looked like a man who was living in a war zone.
But the doctor thought I was the one with the problem.
David was still afraid to "bother" the aides too often -- some, he felt, had deliberately been rough with him because he was "so much trouble." (I believe it was just that they were rushed, and he is hard to maneuver). He was still experiencing one fecal outpouring after another, and he had been trying to clean things up himself during the particularly understaffed night shift. His hands and fingernails were filthy. There were soaking diapers and paper towels on the floor. Still, he was covered in feces.
A MAN OF DIGNITY SURRENDERS TO SQUALOR
"I'm dying," he said. "And all I did was fall down. I can't believe it's ending this way."
What he meant was that he had led a dignified and productive life as an emigre from Belarus, who wrote and taught about Russian literature (he had retired a couple of years ago). He was widely admired. Despite his weight, he was a very genteel man. At least he was before he wound up in this hell hole with several herniated discs and some serious nerve impingement. He had never experienced anything even close to this degradation.
David is one of the 75 percent of nursing home residents who rarely or never have visitors. When I happened to find him, he was totally vulnerable and helpless. It seemed that everyone else was, too; I never saw any other visitor in all the times I was there.
Other patients kept asking me, "What are you doing here? You're not old!" It was as if they never saw anyone from the outside world.
When David had been delivered here by van earlier in the week, after being discharged from the hospital, he was taken straight to a room. He shared this small space with a nearly-deaf insomniac, who kept the TV turned on loudly for most of the night. The emaciated roommate had a ragged, phlegmy cough and was constantly blowing his nose.
This hot, small, noisy room that they shared did not feel like an environment in which one could be restored to good health.
David's sleep deprivation exacerbated his ability to cope with his situation. He was embarrassed to ask for a bedpan because of the lack of privacy, and this worsened the severe constipation he had developed due to the narcotic painkillers he was being administered several times a day, without his knowledge. When the nurse told the doctor about David's impacted bowels, he prescribed three laxatives, a suppository and an enema. I think that's what's known as overkill.
When David subsequently developed diarrhea, the doctor prescribed a pill for that, which I later researched and learned is an OPIATE, which is what had caused David's original problem.
Over the ensuing weeks, virtually every resident I met was taking narcotic painkillers. This in itself is a scandal.
The bathroom reeked of cross contamination. The toilet seat was wet. The sink was spattered and sticky, and David's roommate left his dentures in there, in a pool of greenish water, when he got tired of wearing them. Within a couple of days, we got David into a private room, despite the substantial increase in cost.
JUST LIE THERE AND WAIT - IT WILL ALL BECOME CLEAR
No one with any authority came in to acknowledge David's existence, to discuss the game plan for his rehabilitation, to detail the institution's policies or amenities.
Who was in charge? Was there anyone who would act as his overseer and protector? Or was he on his own?
He lay there by himself, wondering.
David was given no idea of how a typical day would unfold, and in fact no day did unfold typically. It was a twilight dreamworld, in which you never knew what was going to happen next. The varying whims and exigencies of the staff seemed to be the determining factor.
At what time was he expected to arise? He was essentially a big, beached whale in that bed. What help would be provided to prepare him for his day? Someone usually came in between 5:45 a.m. and 8:30 a.m. He was unable to go to the cafeteria, and his breakfast was not provided at a regular time either. It often arrived while he was being washed and shaved -- so he had to resign himself to cold coffee, cold eggs and cold oatmeal.
Even after more than a week in the facility, he was not provided with a reliable routine, nor had he been visited by anyone involved in the facility's administration.
What medications would the facility be administering to him, and on whose authority? What time and for how long each day would he receive rehabilitative therapy? What was his medical prognosis? How long did they estimate he would need to stay here?
David is a proud and sensitive man. He was being treated like an inanimate object. They brought him in, dumped him into a bed and disappeared.
In addition to being cramped and claustrophobic, the rooms contained no shelves or other design features that permit a patient to keep his necessities nearby. David was often positioned such that he couldn't reach anything, including the call button, the phone, tissues, wet wipes, or the ointment that had finally been prescribed for his fungal infection, caused by the fact that his recent-onset incontinence was not being managed appropriately.
The room was a disaster: the garbage cans were overflowing, supplies were piled up everywhere and plastic bags containing David's belongings were heaped on the floor and on the only chair in the room. Boxes containing hundreds of pairs of latex gloves were thrown on top of the only cabinet in the room.
Even if David had been willing to let me tell his many friends where he was, there was no way that a visitor could be made comfortable in here.
One of the first things I noticed, on my initial visit to the facility this year, was the lack of antibacterial hand wash. I had recently spent lots of time visiting another old friend in the hospital (I guess it's that time of life), and there were dispensers outside and inside each room. Hospital personnel had clearly been ordered to use this cleanser before entering and leaving any patient room. The value of this simple step in slashing the number of institutional infections has been thoroughly documented.
POOPY FINGERS: THE AROMA THAT LINGERS
After I had cleaned David up that first day, all I could find to wash my hands with was a small, soiled bar of soap in his bathroom. The dispenser of plain liquid hand soap was empty. I stepped into the hallway, expecting to see numerous antibacterial soap dispensers. I looked all the way up and down the long hallway, and there was only one dispenser. It was empty.
I informed the nursing station. A woman there told me that there should be several dispensers in each hall and one inside each room.
"Come show me," I said.
She was wrong. How could she be so wrong?
"I'm surprised," she said.
Was hand sanitation not an issue in this medical facility?
She shrugged. She said she'd get some soap into the hall dispenser. When I went back about an hour later, the dispenser had been filled less than halfway.
Over the next few weeks, I never saw any aide or nurse wash or sanitize her hands as they dealt with one patient after another.
A MAGICAL REALM IN WHICH GERMS DON'T EXIST
The nurses used their bare hands to put each patient's mind-boggling quantity of pills in nut cups, wrote notes into the record, fluffed their hair, rubbed their chins, patted the hands of passing patients in wheelchairs, made entries into a computer, and then delivered the drugs. Then they returned to the station to handle the next patient's meds. Not very sanitary.
The federal Health and Human Services agency lists overmedication as being one of the top problems at nursing homes.
My limited experience certainly corroborates that observation. It seemed that a whole lot of "piling on" occurred as each patient's medication regimen was devised. My sense was that the facility was attempting both to increase profits and to put patients into a "more manageable" mood. Even those who are of sound mind, like David, are not told what drugs they are being given. And David, despite his usually sound mind, was so traumatized by what was happening to him that it had never occurred to him to ask.
It occurred to me.
On my second day there, I was present when David's many morning medications arrived (there were at least seven pills, and he would receive three more "nut cups" before bedtime). I said we wanted to see a list of the meds and what they were for. The aide summoned a nurse, who brought a form that contained the name, dosage and purpose of each drug that had been prescribed by the nursing-home doctor.
YOU CAN KILL THE PAIN WITHOUT BASHING YOUR BRAIN
There were 15 drugs that the nurses had been authorized to administer, some routinely and some "as needed." I asked the nurse who determines when a drug is "needed," and she said, "Oh, we can usually tell."
David had been prescribed a narcotic pain killer, Lortab, to be administered four to six times per day, without his knowledge.
Being a well-informed man, he would have refused the codeine derivative (if anyone had sought his input), thereby maintaining a clear head and normal bowel function. Lortab has an effect similar to heroin on the brain, and is highly addictive. Narcotics cause drowsiness, changes in appetite and mood, disorientation, impaired balance, and memory and cognitive impacts, especially in the elderly.
David is elderly. He values his brain very much. He had just undergone surgery under a general anesthetic, which itself has been shown to cause permanent cognitive decline in those over 65. He didn't want his intellect messed with any further. But apparently, no one gave a damn what he wanted.
He would rather have endured a bit more pain and taken a simple, over-the-counter NSAID drug, like ibuprofen. Moreover, he wasn't even experiencing any pain as long as he remained in bed, which was virtually all the time. We ordered that Lortab be removed from the list. David took ibuprofen before his physical rehab sessions, and it relieved his pain at least as effectively.
SLEEP-DEPRIVED PATIENTS, LEFT IN THE DARK
Prior to our intervention, David was unknowingly being administered Lortab not only for pain but also as a sleep aid -- an egregious misuse of a narcotic, especially since David made it clear that it was not pain that was keeping him awake.
The doctor -- once again revealing his negligence, ignorance and/or lack of concern about his patients -- had prescribed no probiotics, fiber supplements or dietary measures that could have prevented the severe constipation that had resulted from all those narcotic pills.
THE HEINOUS HOWLS OF IMPACTED BOWELS
David told me he went for several days without moving his bowels (he normally would have had at least two bowel movements a day), and he said he almost felt as if he were going to pass out or have a stroke trying to force out the impacted fecal material.
That was why David "demanded" -- as the nurse put it -- some Milk of Magnesia.
I urged David to stop all drugs for constipation and diarrhea, to continue to reject narcotic painkillers, to take 2-4 probiotic capsules daily and to increase dramatically his intake of whole grains, fruits and vegetables. I felt certain that his bowels would become normal much sooner if we stopped all these drugs that pushed them in one direction and then another.
David and I reviewed his entire drug regimen together, and we ordered that several of them be removed, including medication for constipation, diarrhea, wheezing, dizziness, nausea and anxiety. Most of them pertained to conditions he had never had. But surely it should have been obvious that it was counterproductive to be administering drugs for both constipation and diarrhea. The doctor had set in motion a terrible cycle that was ripping David's insides asunder.
We authorized the continuation of David's blood pressure and cholesterol medication, and a probiotic to restore his normal bowel flora. He also agreed to continue the twice-daily shot of Heparin, to prevent blood clots.
"I don't think you're allowed to say what drugs you will or won't take," the nurse said. "That's the doctor's job."
I handed the nurse the facility's "Welcome" folder and said, "Maybe you'd better learn your own rules before inflicting them on your patients. David has a moral, legal and institutional right to accept or reject medications, unless a court determines that he is a threat to himself or others and orders that he be medicated."
To her credit, she was not offended. "That makes sense," she said.
ANOTHER FIGHT, ABOUT THE RIGHT TO A GOOD NIGHT
At the end of our dialogue with the nurse, we requested a sleeping pill to be administered on an "as needed" basis. David had been sleeping very poorly, and even though he was a bit fearful of taking anything for it, I persuaded him to. His outlook and resiliency had deteriorated badly since he'd been in the nursing home. In order to get better, he needed rest. He needed the motivation and morale to engage fully in his regimen of rehabilitation.
The nurse informed us later that the doctor had refused to prescribe a sleeping pill, because it might make David "groggy" the next day. This was absurd. The narcotic painkiller had been making David groggy. Lack of sleep had been making him groggy. Both of my parents had taken Ambien occasionally when they were in their nineties, with no effect except for an excellent, restful sleep.
The doctor instead prescribed Trazodone, which is an antidepressant. The most common side effect of this drug is drowsiness, but of course the 40 percent of people who take the drug for depression and experience drowsiness have to proceed with their lives, despite the drowsiness -- they can't just go to sleep -- so the drowsiness is something they endure in exchange for an improved mood. In some fraction of that 40 percent, the drowsiness is so extreme that the drug can't be used to treat depression, but it does constitute a useful sleep aid.
THE DOCTOR'S IDEA WASN'T STUPID, IT WAS JUST WRONG
So there was a small chance that Trazodone would help David sleep, and a near certainty that Ambien would.
Trazodone did not help David. It did NOTHING, except to make him GROGGY.
The doctor finally relented and authorized Ambien for David, although he didn't tell David or me. According to the nurse, he said, "David's friend is spending too much time on the Internet."
I do learn a lot reading reputable medical information online. Maybe the doctor could learn a few things as well. I have also taken narcotic painkillers, and Ambien and Trazodone. And a lot of other drugs. I know my drugs! The doctor's defensiveness wasn't doing David any good.
He is "the doctor" for a number of nursing homes and seems to have most of his contact by phone.
(We later learned that when the doctor removed Lortab from David's list of medications, as instructed, he added another narcotic pain killer, once again without David's knowledge or consent. It was my impression that the nurse did not dispense it, though.).
In spite of the Ambien, David continued to sleep poorly. One reason was that aides kept coming in all night and waking him up. He put a sign on his door -- PLEASE DO NOT DISTURB -- yet over and over again, aides entered as late as 11:30 p.m. and as early as 4:30 a.m. to "do a skin test" or record his vital signs or ask if he wanted iced water or "just check" to see if he was OK.
YOU NEVER KNOW WHAT'S GOING TO HAPPEN NEXT
David's life had become a blur of anxiety and uncertainty.
He was supposed to have 75 minutes per day each of occupational and physical therapy.
He never knew when his sessions would be, and the two departments obviously didn't coordinate with each other, either. He lay in his bed, waiting and wondering what would happen next, and hoping that whenever somebody was finally ready for him, he would not have just pooped his pants.
The therapists were very nice young people, but the operation was haphazard. He did not work with the same people on a consistent basis, so today's therapist had no apparent grasp of what he had been doing and how far he had gotten.
No one in either of the therapeutic disciplines ever sat down with David and outlined the plan for his rehabilitation. No one ever described the benchmarks he should be aiming for. No one provided a prognosis for his recovery or gave him any idea how long -- weeks? months? -- it would take for him to return home.
SLOPPINESS, NEGLIGENCE, LACK OF INTEREST
I had noticed that there was an incentive spirometer in David's room. When I pointed it out to him, after he had been in the facility for nearly a month, he said he had no idea what it was.
Incentive spirometers are used in institutional settings to prevent pneumonia. David was at high risk for developing pneumonia because he was bedridden, overweight and immuno-compromised. I mentioned this to the nurse, and she said, "He is supposed to be using it 10-12 times an hour to keep his lungs properly inflated. It's a written order."
A written order to whom? No one had ever said a thing about it to David, and it had been placed on top of a tall, freestanding closet, well out of David's reach. He assumed it was a toy that someone had left behind.
David finally relented and allowed me to alert several of his many friends to his situation. Their outpouring of attention and affection greatly improved his morale. A bunch of his former students pitched in and bought him an iPod and stocked it with his favorite music.
Finally, he could close his eyes and be transported to realms of beauty, poignancy and ecstasy. He was moved to tears.
MY OTHER FRIEND HAS LOST WEIGHT -- AND HOPE
Meanwhile, the woman I had initially come to see -- an active, energetic, independent 85-year-old -- had sunken into a depression. This was not the Ariel I had known since I was in college.
After she raised her family, she had become a dedicated and widely loved volunteer at a downtown soup kitchen, and she also remained active in several arts and cultural organizations.
She had been a jogger until her mid-seventies, but she still took a brisk four-mile walk each morning. She was a competent woman in so many ways, still interested in everything and everyone, and still truly beautiful.
Ariel had fractured her hip in a fall while hiking through Red Butte Garden. It was such a relief that it was a simple fracture, rather than a break. She obviously had some osteoporosis in her spine, but all her striding around must have kept her pelvis and thighs strong.
'MOTHER'S LITTLE HELPER' BY THE SPOONFUL
Like everyone else in the facility, Ariel was being presented with a nut cup full of pills three or four times a day, and she was expected to swallow them unquestioningly.
We asked for a copy of Ariel's medication list, and were shocked to see ten drugs prescribed. Ariel marked off more than half of the pills, telling the nurse they had nothing to do with her condition.
The nurse was visibly irritated that I had prodded yet another patient to decide for herself which drugs to ingest.
Like David, Ariel had been receiving a narcotic pain killer 4-6 times per day, without her knowledge, and she insisted that it be stopped. She felt it might be causing her "fuzzy brain" as well as her bowel problems (she was correct).
Ariel also happens to be a highly addictive person, who has had alcohol and drug dependency problems in the past. She had become so obsessed with narcotic pain killers when she was in her mid-60s, following a car accident, that she had required inpatient treatment.
No doctor who had done his due diligence about her medical history would have filled her bloodstream with narcotics.
It was incredibly stupid and negligent. It was probably actionable. It was pure luck that we discovered this situation within two days after she arrived.
My friend was also appalled and infuriated to discover that she was being administered an antidepressant without her knowledge or consent. It was her prerogative, she insisted, to decide whether to be medicated for her depressed state and to decide which medication to use, based upon face-to-face discussions with a doctor.
IS THERE A DOCTOR IN THE HOUSE, TO GO WITH ALL THESE DRUGS?
The drug she had been unknowingly taking was one she had tried several years ago, after the death of her husband. It gave her no relief at all. But of course, the doctor at the nursing home had no way of knowing that, because he hadn't consulted her or reviewed her records.
Her "occupational therapy" had consisted of activities such as baking peach pies and making "patriotic paper chains" for the facility's Fourth of July party.
No one had been able to explain to her what this was intended to accomplish and how it would help her return to her normal life. It seemed silly, and she was keenly aware that Medicare was paying dearly for every moment of these elementary-school activities.
Ariel didn't want to waste taxpayer money, or her own time. She wanted to get better and get out of there.
When Ariel questioned the value of these activities, the OT's response was, "OK, then: What would you like to do today?"
Ariel didn't want to make that decision. She wanted it to be made by a professional and then explained to her so she could understand how it pertained to her goal of returning to an independent and active life.
She was also upset about the pace of therapy. When she had been in the hospital for several days, after her fall, the occupational therapist, on the first day after her admission, had her get out of bed, stand up -- holding onto a walker -- and step from side to side.
It was very painful (and painful to watch, as she cried out in agony), but her delightful therapist, Erin, pressed her to persist. Yes, it will hurt, she said, but you can do it, and you can do more every day. When my friend lay back down, she was exhilarated. This had given her hope.
She had feared it might be months before she could walk again. Now the future looked much brighter. She would be walking in no time!
SUDDENLY, WALKING BECOMES A BIG STEP
But the nursing home had a different approach. It was almost two weeks before they even let Ariel stand up. It was more than one additional week before she was allowed to take a step, and another week before she took several steps. A whole month wasted, waiting to catch up to the level she had achieved back in the hospital, on the first day after she fell. She felt trapped and helpless under the overprotective and undercommunicative thumb of the facility.
The therapists had insisted that she remain in bed or in a wheelchair, and they had her performing little exercises for her upper and lower body that she felt were doing nothing but prolonging her dependency.
Ariel had no deficiency of upper and lower body strength. She went up and down the stairs about 20 times a day in her three-story house, which also had stairs leading down to her beloved garden. She did heavy lifting (dragging 20-pound bags of mulch down to the stream, lifting 30-pound watermelons out of the trunk of her car, washing floor-to-ceiling windows that comprised the entire south-facing wall of her home).
She knew she could stand up and move -- she had already done it! But after being kept in a wheelchair for so long, her joints and muscles tightened up to the point that she doubted she could stand again. She felt weaker and more immobilized than she did when she arrived. The physical therapist actually admitted that her joints had become "frozen."
Ariel and I had to demand a walker (we threatened to take her elsewhere if they wouldn't relent) so that we could work together to build up her strength and confidence. Nursing home administrators fought us all the way, saying she needed to be in a wheelchair because she was a fall risk. She had fallen once in her adult life, due to tree root that jutted up into the hiking trail. She was not a fall risk.
Naturally, the facility was billing Medicare for her time as if she were a Licensed Physical Therapist.
In her defense, she seemed to be a dedicated and reasonably knowledgeable woman, but with Ariel's quality (and quantity) of life at stake, we were shocked that someone who was essentially a paraprofessional was running the show.
Her boss, who actually was an LPT, theoretically signed off on whatever she was doing, but he was rarely around, and seemed quite cold and unresponsive to both Ariel and me.
To make matters worse, the therapists at this facility use a billing device that Medicare is finally becoming aware of, but not before it paid out $2.1 billion in overcharges in the first half of 2011: Therapists bill as if they are spending 75 minutes with each patient, when in fact they have several patients going at once. Medicare is thus paying hundreds of dollars per hour for each therapist.
THE WALKING MANIAC IS FREE AT LAST!
Once Ariel got the walker, there was no stopping her. She got out into the halls, on her own, several times a day, and thoroughly enjoyed the social interaction as well as the exercise that this provided. Each day, she went farther. Soon, she was going outside, conquering hills, curbs and uneven walking surfaces.
She was finally talking about "when" she would going home, instead of "if." She had demonstrated convincingly that she didn't even need the walker anymore, although the facility kept nagging her to use it, for liability reasons. We strolled the halls together, without the walker, and she got along beautifully. The only medicine she was taking was ibuprofen, and she only took that once a day at most.
ANOTHER DISTURBING VISITATION
About three weeks after my friend checked into the facility, a man entered her room in the darkness. She later learned it was 6 a.m., but it was dark, and she had been sleeping. He said he was there to X-ray her, and he pulled back the covers and lifted her nightgown before pressing something metallic against her lower abdomen and pubic area.
SPOOKY X-RAY MAN UNDER HER SHEETS IN THE DARK
I told her there was obviously something fishy about this. Why would someone be doing X-rays at 6 a.m.? Who authorized it? Why had she not been told to expect this visitation? Do little portable X-ray machines even exist?
Yes they do, and they're very cute. The nurse said a doctor had ordered the X-ray, but she didn't know why it was handled the way it was. She didn't seem surprised.
One day when I visited Ariel, a nurse had inadvertently left some paperwork in her room, and I discovered that every blood draw that had been taken since her arrival (they had been doing extensive -- and expensive -- lab work every two to three days) had indicated numerous out-of-range results. Every single lab report was characterized, as a whole, as "abnormal."
The data suggested that she had anemia and kidney malfunction, and that she had very high blood sugar, low sodium and low calcium, among other problems (including an infection somewhere) -- none of which she had ever experienced before (including her lab work from a complete physical the previous month, which indicated everything was normal, as did her lab work in the hospital). Many of the tests that were flagged as abnormal made no sense to us at all.
Several of these lab numbers suggested that dietary modifications should have been made for my friend. She was consuming a lot of sugar, for example, even though her blood glucose was dramatically elevated.
THEY DRAW LOTS OF BLOOD, FILE AWAY THE RESULTS
No one had informed her of these "findings," explained what they meant or detailed what the medical staff would do to return her blood work to its usual normal status. I don't think they even looked at the reports; they just ordered several hundred extensive lab reports every week, and raked in the dough, and their 90 patients permitted the repeated blood draws without question.
The paperwork also indicated that when Ariel arrived at the facility, she had a candida infection, which she did not. It said she had coronary artery disease and persistent nausea, which she did not. It said she had tinnitus and general muscle weakness, which she did not. It said she had frequent dizziness and chronic hypertension, which she did not (in fact, her blood pressure has always been at the lowest end of normal). It said she had diverticulitis, which she did not.
What was going on here? Each of these "conditions" came with a numerical code, which indicated that it was being used as part of the billing for Medicare reimbursements.
In subsequent weeks, I reviewed a heap of hospital and nursing home notes and lab results (massive overdocumentation, which nobody reads).
I found that every doctor, therapist, social worker, discharge planner, etc., had filed a "report" on every brief visit, obviously for billing purposes. Even though it was all just part of a big revenue-generating scheme, I was touched to read the impressions of Ariel that these people had reported. They described her as attractive ("looking and acting at least 30 years younger than her age"), alert, charming, responsive, cooperative and optimistic.
I wish they could see what 10 weeks in the health-care system did to her.
Among these documents, I also found a key to the diverticulitis issue, mentioned above, which illustrates shockingly how slipshod and cavalier is the much-ballyhooed electronic records system.
I discovered that Ariel had been subjected to a barium swallow test while she was in the hospital. This is yet another test that seems to be ordered as often as possible, to generate revenues.
The barium swallow indicated that Ariel has Zenker's diverticula, which are pouches that develop in the pharynx just above the upper esophageal sphincter. Food may become trapped there, causing coughing, difficulties in swallowing, aspiration into the lungs of food or drink, bad breath or regurgitation.
The test results flagged this condition as something that "merits a thorough follow-up assessment."
But when the hospital created a summary of Ariel's so-called medical conditions that would accompany her to the nursing home, it mistakenly omitted the "Zenkers" reference, and stated that she had diverticulitis, which is an imflammatory condition of the colon, quite far away from Ariel's throat.
Regarding all of these tests -- both those conducted at the hospital and the blood work routinely done at the nursing home -- no one had ever discussed any results with Ariel.
I wanted to confront the nursing home officials about these questionable documents -- which we were not even supposed to have seen -- but my friend was afraid the staff would retaliate against her. She was there, helpless and alone, while I could "escape" whenever I wanted to.
The documents that were mistakenly left in Ariel's room also indicated that she had lost five pounds in two weeks. She had been underweight (she's always had body-image issues) and osteoporotic when she entered the facility. She could not afford to lose weight. No measures had been taken to increase her caloric consumption. To the contrary: Her meals had been changed from "normal" to "small." No one had told her that she needed to eat more, and that her frailty would very likely shorten her life if she didn't make an effort to consume more calories.
As with the lab reports, I don't think anyone paid any attention to the weigh-ins. They were regularly conducted, for everyone in the facility, as a billable service.
IS ALL THIS PAPERWORK JUST FOR REIMBURSEMENT?
The papers stated that she did not have a living will or healthcare power of attorney. In fact, she had submitted these very documents to the intake manager when she was admitted. If a life-threatening emergency were to arise during her stay, her well-thought-out preferences would not be implemented.
Her intake form said, "Code status: none," which in practice means that the facility, not Ariel's designated protector, would decide if she should be resuscitated if she went into cardiac arrest or was in some other life-threatening situation.
This had happened in the hospital as well: no record of her end-of-life documents or her code status, which had been submitted upon admission and reiterated when she was in Progressive Care.
A doctor friend told me that the older you get, the more important it is for you to designate a health-care power of attorney. If a patient is quite elderly, my friend said, doctors are much more inclined to just "let her pass on" rather than working to save her. They might well assume that, due to her age, Ariel's life contains little value or pleasure.
That is certainly not true of Ariel, and I met a number of people in their eighties and nineties in the nursing home who were alert, talkative, insightful, funny and derived great joy from many things, especially their families.
Over and over again, I have seen this ageism from the primary care level to the hospital to the rehab facility. The professionals seem to think it's not worthwhile to prolong the life of someone who is old, unless there is some quick and easy money in it for them. They bring up "end of life" issues before they've even done a decent diagnostic workup or assessed the patient's quality of life.
Ariel and I pored over the stack of documents and reports about her and found one inaccuracy or questionable recommendation after another.
We learned that along with her physical therapy, she should be administered heat or ice to the affected area for 15-30 minutes every two hours. This was characterized as "one of the most important elements in her early treatment."
She had never received either heat or ice. When we mentioned this to the nurse, she said, "Oh, did you want ice? We can do that!"
Even after this interchange, my friend was never provided with heat or ice unless she requested it, and the aides were always so busy that she rarely imposed on them. In her condition, heat and ice are excellent ways to control pain and expedite healing.
HOME AND BACK
My friend was discharged after she and I pretty much took over her rehab. I brought in a heating pad, which she found to be incredibly comforting in relieving both pain and stress, and some blue-ice packs. She got up and walked on her own every day.
She was thrilled to be going home, and I think that her recovery was largely due to her own initiative, not to the costly services provided by the nursing home. But within days after going home -- looking joyful, beautiful, triumphant -- and after thousands of dollars worth of "care" -- she reinjured herself within days, simply returning to her normal activities of housekeeping and gardening. This time, the pain seemed to be deep in her upper buttock.
So, after less than a week at home, she had to return to the nursing facility, in extreme pain. She hadn't realized how fragile her bones had become, and no one at any point in her care had discussed this with her. She had apparently lost a lot of density, leaving her whole skeleton brittle. Osteoporosis can become a frightening condition.
It was clearly evident the first time she entered the facility that she had advanced osteoporosis. But during that entire month of so-called occupational and physical therapy, her condition had never been addressed. The OT had her making holiday decorations and doing other pointless activities instead of teaching her how to engage in the activities of daily life in ways that would not subject her to further fractures. My friend was not aware that even twisting from the waist to reach something could cause a fracture. Getting out of bed or out of a chair without taking proper precautions were also perilous if done improperly.
NO DIAGNOSIS, JUST A BED AND A BILL
When Ariel returned to the nursing home, it did nothing to have her assessed. In fact, a document we later found taped inside the door of her closet, which was signed by her physical therapist, said she had been readmitted for a pelvic fracture, which was inaccurate. That was why she was admitted the first time.
Her current pain had not been diagnosed, but it clearly wasn't pelvic. The form also stated that she needed help getting out of bed, bathing, and toileting, all of which were inaccurate.
It was obvious that the first thing the facility should have done was to order a bone-density test and get her an appointment with an orthopedic doctor. They did NOTHING to find out what was causing her new, excruciating pain.
THE BREAKING POINT
Even without an accurate, current diagnosis, they began subjecting her once again to 90 minutes a day of so-called occupational and physical therapy. I pressed Ariel to demand an explanation of how they could treat her without a diagnosis. She demurred, saying she would "go along," hoping it would be helpful.
I personally made the two appointments, which were for more than a week after she arrived.
In the meantime, she was being induced to perform repeated stretching, weight-bearing and extension movements. Ariel told her therapists from the beginning that they hurt her. They assured her that this was a normal aspect of the recovery process.
Within a few days, her pain was much worse. The uninformed, careless "therapy" had caused an isolated pain in her buttock to expand, now encompassing her entire spine and scapular areas.The stretching created so much inflammation and spasm in her back -- which hadn't been bothering her at all when she entered the facility -- that she was unable to sleep without taking opiate pain killers, sleeping pills and muscle relaxants.
Just a few weeks ago, the hospital had reported that, "She moves both upper extremities without any deficits."
Now it was excruciating for her simply to brush her hair or use arm strength to change positions in bed. This was due to the stretching that extended her upper back, which was markedly curved, and her shoulders.
When we saw the orthopedic surgeon, he took X-rays and said he could see that her original injury, the pelvic fracture, was beautifully healed. He ordered a bone scan, which cost several thousand dollars, to find the source of her current pain.
Two weeks later, the therapy staff hadn't received the doctor's report, although it should have been received only four days after the procedure.
I had to call the doctor myself to find out what the bone scan showed. (I asked that he send my friend a copy of the report, but he never did.)
NEW FRACTURES SIGNAL A CASCADE
Ariel had apparently gotten tiny new fractures in the sacroiliac joint on both sides of her ilium, according to the radiologist's analysis.The one on her left side, which was where she experienced pain, was the most notable. There were also new or newly reactivated compression fractures of the upper back, which was where the therapist's stretches had caused her to ache so much.
When I asked the doctor what therapy was appropriate, he recommended a very gentle, conservative approach: heat, ice, ultrasound and "just moving around."
He specifically cautioned against stretching, using the exercise ball and lifting her legs.
For some naive reason, I assumed that he would convey these orders to those who were responsible for her rehabilitation. How did he expect the bone scan to serve any purpose if its results were not clearly conveyed to her caregivers?
(Whenever I have been to physical therapy, a written prescription from an orthopedist or physiatrist was required. These were always quite detailed, and often included copies of my X-rays.)
THERAPY BASED ON WHIM, NOT SCIENCE
Two weeks later, the physical and occupational therapists hadn't even been informed that she'd had a bone scan, much less what it discovered and how they should proceed.
Even after I informed the rehab director of all of this, and asked him to call the doctor to get a "plan of action" for my friend, he failed to do so.
I called the orthopedic surgeon to ask if he had provided information to the nursing home and he said yes. I asked whom he spoke with, he said, "I don't know -- whatever nurse was on duty."
I asked if he had emailed, faxed or dictated a physical therapy prescription, and he said, "No, I just told her what I told you -- that there should be comfort care (ice, heat, ultrasound) and walking."
YET ANOTHER NEGLIGENT BREAKDOWN IN COMMUNICATION
We never did learn what nurse he talked to, but I wasn't at all surprised that she failed to relay his "prescription." I wouldn't have trusted her to relay it fully and accurately anyway. (I wouldn't have trusted myself to relay it fully and accurately either, based on a phone call; that is a doctor's job).
The nursing station is so chaotic, and the facility in general is so understaffed and so rushed -- and increasingly so negligent -- that I assume it simply slipped her mind.
And he shouldn't have relied upon her to. He should have communicated directly -- preferably in writing -- with the rehab staff.
As far as I was concerned, both the orthopedic surgeon and the nursing home were guilty of malpractice and gross negligence. I would not regard it as melodramatic to charge the physical therapy staff with assault for what they had done to her, despite her repeated protestations that they were hurting her.
SO I WRITE THE PRESCRIPTION -- HOW ABSURD
I personally wrote down the doctor's simple, "comfort-care" physical therapy prescription and gave it to the therapist. I also discussed it with her.
Even so, the institution's PT and OT staff continued to pressure my friend to engage in stretches, range of motion exercises and weight-bearing exercises, saying they were "gentle" therapies and that they were designed to keep her body from "freezing up." The stretching exercises that involved extension, or bending forward from the waist, were about the worst thing she could have done in her condition, according to the orthopedic surgeon.
My friend -- a gentle, unassuming person -- was afraid to challenge the therapists, for fear of insulting them. She felt very vulnerable generally in the nursing home, and she was afraid that if she "caused any trouble," the staff might retaliate.
FEAR OF PISSING OFF HER CAREGIVERS
This sounds paranoid -- and it was very frustrating that she wouldn't even let me confront the staff about its negligence and possible malpractice -- but I sympathized with her fear. She was completely at the mercy of the nursing home staff, and she was usually alone, so I understood her need to stay on "their good side." She added that she might need to come back here some day, and she didn't want to create a hostile environment.
But she would pay for her reticence.
Being unaccustomed to taking medications at all, she was hit hard by the drugs, and she felt "foggy" during the day, in addition to being in pain. She was urged to take pain killers and muscle relaxants every four to six hours during the day, but she refused. She wisely feared the effect they were having on her cognition and alertness.
THEY WON -- SHE HAD BECOME INSTITTIONALIZED
I watched every day as her motivation, hope, focus, ability to cope psychologically and take charge of her own care diminished. It seemed that they had won. She was institutionalized. She did what she was told. It was a terrible thing to witness.
We were both concerned that the stretches had reactivated spinal compression fractures that had finally stopped hurting her a couple of years ago, but were shown by the scan to still be active sites of bone-repair activity.
I sent an email to the rehab director, providing a link to sites that sold pelvic supports and asking him to discuss them with my friend. I felt that if her pelvis could be stabilized, she would be more comfortable and less likely to reinjure it.
He ignored my email.
We finally were able to get her in for a bone density test. No one in rehab seemed to care about the condition of her spine or scapulae as they pulled her farther and farther forward from the waist.
AFTER WEEKS OF 'THERAPY,' THE WORST PAIN YET
Soon, she was on her back, on the heating pad, sobbing in pain. She had come back to the nursing home with an isolated pain in her sacroiliac area. Four weeks later, her entire back was in excruciating spasm.
It had been obvious from the start, with both of my friends, that the nursing home's various departments, including rehabilitation, had quotas to meet and in order to keep the Medicare money pouring in, and budget constraints to ensure that much of that money became profit. Although the therapists were nice people, they seemed to have less concern about providing appropriate therapy than keeping their numbers and "billable hours" up.
A TOUGH WOMAN GROWS PASSIVE, WEARY
My friend had now spent another full month in the nursing home. She was much worse than she was when she got there. Days passed in a blur, as she seemed to lose her will to go home and her capacity to participate in decisions about her care. She became increasingly passive. It was so painful to see this woman, who had always been strong, assertive, rational and decisive reduced to an almost childlike status. She did what she was told.
One afternoon I found a document titled "Clinic Visit and Progress Note," which was signed by her occupational therapist. It wasn't dated. It wasn't addressed to anyone. It was difficult to understand what purpose it served.
But after all this time, someone was finally acknowledging -- to somebody (who knows?) -- that Ariel's "care" had made her worse.
GRINDING PAIN AND LOSS OF MOBILITY
"She has had a significant increase in her pain," the therapist wrote, noting that now my friend's back and shoulders -- as well as her sacral region -- were impacted, and that there was "grinding, pain and loss of mobility" in her scapular (shoulder blade) areas.
She admitted that my friend was now having to be medicated for muscle spasms as well as pain and that she had been advised to take these meds "day and night."
She concluded by writing, in boldface: "Please advise regarding new deficits."
She didn't specify whose advice she was seeking, and a week later, she had said nothing to Ariel about having gotten any advice.
My friend, in spite of her active life, had never had back or shoulder pain.
She had been damaged. As far as I was concerned, it constituted assault.
'YOU'D BE BETTER OFF AT HOME'
I said, "You'd be better off at home," and she replied, "I know, but I'm just not ready yet to leave." It was crazy.
Her bedsheets hadn't been changed in two weeks. She finally dared to leave a little note on the door, asking "please, if you have time, give me some fresh linens."
Her garbage cans were overflowing.
Her jug of iced water, which used to be refilled at least twice a day, hadn't been filled in three days.
It was taking longer and longer for the call button to be answered.
When a request was made of an aide (usually a flushed, breathless, perspiring aide), it was as often as not forgotten.
SHE COULDN'T TAKE IT ANYMORE
Before we even had time to get the results of the bone density test, my friend, in a surge of exasperation and despair, called a taxi, packed up her few belongings, and went home. Her second stay there, like her first, had lasted for a month.
She was leaving in far worse shape than when she arrived. Moreover, she was returning home having never been taught -- during all those hours of so-called therapy -- how to avoid future fractures. She didn't know how to bend down or reach up, how (or whether) she should go up and down the stairs, how far she could lean her head forward or back to wash her hair, how to sit, in order to avoid excessive compresssion, how to get into a car without causing a twist in her spine or pelvis.
It had become clear, in the four days she spent at home before her return to the nursing home, that her bones were so fragile, the activities of daily living could trigger spontaneous little fractures that were extremely painful and could put her in a wheelchair for the rest of her life.
Nevertheless, she had to get out of there. She had been traumatized physically, and she had become frail. Equally devastating was that she had become cognitively impaired.
When I called her at home, it was clear that her time in the hospital and nursing home -- more than 10 weeks of drama and interaction -- had made no mark on her brain. She had virtually no memories of any of it.
I hopefully theorized that it was the fear, trauma, unfamiliar setting and routines, the onslaught of so many people and experiences -- and the administration of general anesthesia, narcotics, and other mind altering agents -- that had caused her mind to shut down, in a sort of self-protective tactic, to enable her to tolerate it all.
COGNITIVE TOLL PERSISTS, AS DOES THE PAIN
But even after she returned home, her cognitive problems persisted. She constantly repeated herself. She -- who had been so organized, meticulous and competent -- was overwhelmed with confusion and began behaving erratically, even obsessively. She became defensive and irritable.
A dear friend was becoming hard to love and even harder to help. She was pushing everyone away.
This woman, who just three months ago had a reasonable expectation of remaining active, joyful and independent indefinitely, now faced what I regarded as a likelihood that she would require long-term care.
In the four months that she has been home, she has resumed many of her activities, but she has to be very careful, and she is forced by pain to lie on a heating pad several times a day. She is now having to do something she swore she never would: Bring in outside help for many of her indoor and outdoor chores. Having strangers hanging out at her house is very stressful for her. She feels completely vulnerable -- and she is.
After all these months, David has not been able to go home. His friends moved him to a facility that focuses more on rehab and is less institutional, but it appears that he may never walk again.
So, to Medicare I would say, thank you for spending hundreds of thousands of dollars to take care of my friends. I just wish you had benchmarks in place that would require that the money be spent wisely. You are definitely enriching lives, but perhaps not the ones you intended to.
POSTSCRIPT: David died in April of a heart attack. His many admirers and friends were devastated.
MEET THE PEOPLE BEHIND THE DIAGNOSIS OF "ALZHEIMER'S": I WAS TOLD THEY WERE "BRAIN DEAD," that they "have nothing upstairs," that they "don't know what they want," and that they "can't talk." In my interactions with Alzheimer's patients at a nursing home, I found all of this to be patently false. http://kronstantinople.blogspot.com/2012/06/your-purgatory-awaits-you-cream-of.html
This excellent blog post contradicts pretty much everything I have to say. http://blog.drmurielgillick.com/2013/06/culture-change-in-nursing-home-boon-or.html