"What Should I Write?"

The number of the Intensive Care Unit flashed on my caller ID as I picked up the phone. "Sue, it's 'Nancy,'" the social worker said, "I have a patient for you. Her name is 'Marilyn,' and she's in ICU bed six. She came to the ED in acute respiratory failure, and they found an infection, and pneumonia, and she's been in ICU ever since. She has a tracheostomy and is on a ventilator, and she'll be going home today. She's pretty obese, too. The doctor is right here with me. He can explain more, and you can tell him what you need."

Nancy handed the phone to the intensive care physician managing Marilyn's case while my curiosity mounted. Few patients are discharged from the ICU directly to home, so as home healthcare liaison I don't see critical care folks very often and am an anomaly when I appear in the unit. "We're getting ready to send her out," the doctor said, "She will need a nurse to see her at home. But what would a nurse do for a patient like this? I'm writing the discharge orders now, but, about the nurse, what should I write?"

It's a good and fair question, although I smiled at the realization that the doctor knew the patient needed a nurse, but he couldn't say why or what that nurse would do. It was perhaps the most honest and refreshing question I've been asked in a long time, but the fact is that none of us really know exactly what our colleagues in other professions know and do, at least not well enough to write orders or treatment plans for them.

From time to time I send patients to the doctor, or to the Emergency Department, or to a Physical Therapist or another provider. But I don't tell the doctor, ED, PT, or anyone else what to do once the patient arrives. I call ahead and explain why I'm sending the person, describe what I have observed and done, note how the patient responded, and sum up with a status report of how the patient is at the moment and any circumstances or special considerations I think the receiving provider should know.

But having done that I don't say, "And Doctor, I expect you to do a complete examination, order these blood tests, that scan, an EKG, and x-rays. Then when you have narrowed the differential diagnosis down to 'x' vs. 'y' vs. 'z' you should . . . " No. I provide my input as the treating nurse, and trust the doctor to practice medicine.

I will tell a Physical Therapist that I'm referring a patient because she or he was very weak when I visited, having difficulty rising from a chair, holding onto furniture for balance while walking, and complaining about back pain that made standing upright difficult. I don't say that I expect the therapist to do a comprehensive evaluation of the patient, assessing strength of all muscle groups, balance, endurance, gait, transfers, and the patient's ability to fling an empty beer bottle at the television when the referee makes a bad call. No. After I have described my observations and detailed my concerns, I trust the Physical Therapist to do his or her job.

I may call a counselor, a dietician, a speech pathologist, a pharmacist, a respiratory therapist, a member of the clergy, a chiropractor, a social worker, and/or any of a plethora of others, but I don't tell them what their jobs are or how to do them.

And that's a darned good thing, because no matter how capable a nurse I am, I'm not qualified to practice any profession other than my own. And neither is anyone else, including physicians.

The work of medicine is diagnosing and treating pathology. That's what doctors do. Along the way most have learned something about preventing some diseases, and so they counsel against smoking and in favor of "flu shots." But their focus is disease, and symptoms are the clues that tell doctors if they're proceeding well, that is, if patients are improving or deteriorating. Treat the disease, manage the symptoms and side effects of treatment along the way, and keep tweaking the plan until the patient is well, or as close to well as possible. Yes, that's what doctors do.

When healthcare is assumed to be synonymous with disease management, symptoms are a secondary focus, markers along the road that are an indication of the extent to which the pathology at hand is being well managed. This may be why doctors sometimes downplay symptoms that are important to patients: The doctors can see that the disease is improving and so the symptoms matter less, because in time, if all continues to go well, the pathology will be banished and the symptoms with it. In this line of thinking, some dizziness, discomfort, constipation, insomnia, nausea, whatever, are but relatively insignificant bumps on the road to health, and while a few pills can be tossed into the mix to lessen these, "really" the patient is "fine" and there's little cause for concern.

However, for patients the experiences that doctors call "signs and symptoms" are primary most of the time. While of course patients want their broken bones to heal, their hearts to recover from "attacks," their cancer to go away and never return, and their other diseases to be cured; in short, while in this way they and their doctors share a common goal, in the day after day dailiness of their lives what most affects patients is not that their ejection fraction is 30% but that just making a sandwich and washing the dishes wears them out. It's not that the x-ray looks "beautiful," but that the fracture site throbs at night and it's next to impossible to get dressed because the cast is in the way, nothing fits over it, and keeping one's balance while attempting the feat has become a gymnastic event. And while there's no better news than that the scan shows the tumors are smaller, what is in the forefront of patients' minds most of the time is the relentless fatigue that has taken over their lives since chemotherapy started, along with the sores in their mouths and and the backsides that have become almost unbearably tender from so many trips to the bathroom.

When as a teen I announced my interest in a career in nursing teachers and many others often encouraged me to reconsider and choose medicine instead. I was too smart, too quick, too capable for mere nursing, they said, and really should be a brain surgeon or neurophysiologist instead. Or something else. But certainly not "just a nurse." And somewhere past the halfway point of my first undergraduate year the full crisis hit, and I sat sobbing in my dorm questioning whether I should change my major to pre-med after all and transfer to the "better" university that also had accepted me, in order to be as well positioned as possible for a slot in a top medical school three years later.

I stayed where I was, in one of the best undergraduate nursing programs in the country, but it was years before I could articulate why.

If one is fascinated by the human body as a biological organism and by pathophysiology and all that can be done, down to the sub-cellular level, to confound it, and if one feels a yen to serve by curing diseases and eliminating the suffering they cause, then a career in medicine is the way to go.

But if one is fascinated less by the disease, less by the biological science, less by the body as an organism, and more by persons, the choices they make, and life in all its richness and messiness that unfolds in so many different ways for different people, then the world of medicine is far too confining. Similarly, when patients want to be vibrant and healthy; comfortable, strong, and free; and able to envision the lives they want and to go about making those lives happen, regardless of age or of the specifics of their dreams or heartsongs, then "healthcare" that reduces to "sick care" simply isn't enough.

Nursing is the profession that is about helping people position themselves to live their best lives, whatever that means for them, whatever is possible for any given human being. We start where the patient is and move forward. We don't and can't do it all by any means, but we may be the best at knowing who can help, which referrals are in order, what other expertise to tap, and how to coordinate all the pieces.

Although I couldn't explain it at the time or for years to come, at fifteen, with a year as a "Candystriper" (hospital volunteer) under my belt, I knew better than my teachers and mentors where I belonged. And today I shake my head and try not to roll my eyes every time someone mentions "doctor's orders," because apart from the rather small slice of the healthcare pie that is medicine doctors really don't "order" anything at all, or know what to order in the first place.

"Well," I said to the intensive care doctor on the phone, "I'm hearing about Marilyn for the first time right now. I haven't met her or reviewed her chart. But based on what Nancy just told me I'd say that this patient is at high risk for pulmonary complications, so a nurse visiting her at home will assess and evaluate her respiratory status carefully, looking for any indication of infection, decreased pulmonary function, or other problems. I imagine you have tweaked Marilyn's medication regimen while she's been in the hospital; the nurse seeing her at home will evaluate the use and effectiveness of those drugs. The nurse also will assess the learning needs that Marilyn and her husband have and provide needed education based on those findings. Infection prevention and control are likely to be important, and the nurse will address those and also will address nutrition, both to promote strength and healing and to support the goal of weight reduction. I don't imagine Marilyn is moving around very much, so the nurse will be looking for complications of poor mobility and teaching ways to prevent these. And I'd suggest a Physical Therapy referral for a safety evaluation and to get this patient moving in whatever ways are possible."

"That's awesome!" the doctor exclaimed, with a tone that sounded truly awed, as opposed to the commonly overused, hackneyed invocation of the word to refer to anything positive or good, "That's perfect; thank you . . . " And I heard him muttering as he typed, " . . . evaluate respiratory status . . . nutrition . . . refer to Physical Therapy . . . "

"Really, just give me a jumping off point," I said, "'Evaluate and treat' or 'Home health to consult' almost always is sufficient. From there we'll evaluate the patient, flesh out the treatment plan, and send it to the patient's doctor. I'll be down shortly to start that process for Marilyn, once I meet her and read her chart."

All of us in healthcare professions bring something different to the table. In my state and many others a physician cannot even testify in court about the practice of a nurse or other non-physician; they are different professions, all highly educated, individually licensed, and uniquely experienced. It is a disservice to patients to implicitly or explicitly limit their healthcare to things falling under the umbrella of "doctor's orders," and everyone is best served when complementary disciplines work together. There was a time when physicians circled the wagons and fought to maintain control of healthcare, arguing that this was in patients' best interests, although that it served the financial and political self-interest of doctors was glaringly apparent. In the practice setting that is easing somewhat now, with day-to-day posturing of this sort mostly focused on squabbles about the actual diagnosis and treatment of pathology that has been doctors' forte all along (to what extent should Nurse Practitioners be able to make medical diagnoses and prescribe drugs, for example).

Be this as it may, and while yes, we yet have a ways to go, it is mightily encouraging when, instead of strapping on the traditional blinders of medicine and assuming that a correct diagnosis of pathology and a proper medical treatment plan is the sum total of 21st century healthcare, a doctor treating a patient, even a patient in a critical care setting, calls a nurse about the work of nursing to ask,

"What Should I Write?"

Chasing Two Rabbits

It's said that when one attempts to chase two rabbits at the same time the only sure outcome is that both will escape. And for all our talk about busy-ness, multi-tasking, and juggling, to the point that these come to seem normal if not praiseworthy, the fact remains, with an increasing body of supporting data, that one cannot do two things at one time and do them justly and well. Even Jesus of Nazareth said no one can serve two masters, yet in healthcare we're expected to do it every day.

"Lucille" is 93 years old and in August went to the Emergency Department with back pain that turned out to be due to a compression fracture of one of her vertebrae. This means that one of the bones in her back had collapsed, a problem that occurs fairly often in advanced elderly patients who have thinning bones. She was admitted to the hospital to undergo a procedure that restores the height of the collapsed bone and then cements it in place so it doesn't collapse again.

The next day the manager of the orthopedics department called me. Lucille wants to go home, he said, but she lives alone in a second floor walk-up apartment and has homemaker services only fifteen hours per week. While her granddaughter and grandson-in-law live downstairs, they both work outside the home and so aren't available to help except in the evenings and on weekends. Lucille was doing well after her procedure the previous day, but the manager was concerned. "Will you go talk with her and see what you think?" he asked.

On a personal note, August was a bear for me. Property taxes for half the year were due, a painful bite in excess of five thousand dollars. At the same time, the car developed a two thousand dollar problem, and two of the dogs ran up a nearly thousand dollar tab for the vet. The mortgage, utilities (including summer air conditioning expense), and routine expenses ranging from groceries to gas all had to be paid as well. Some months just are like that, but darn! they're tough when they happen.

One of the professional hats I wear is that of home healthcare liaison to an area hospital, where I help to transition patients from hospital to home, being sure that they have the supplies, equipment, and services they will need once discharged. I meet with patients and their families or other helpers before they leave to answer their questions, assess their needs, and evaluate whether there may be safety or caregiving issues at home while the patients recover or as they cope with chronic illness. I review the medical record and discuss each case with the hospital providers, and then send pertinent information to the home health agency so services can be initiated. Roles of this nature have been around for a long time, but too often these days their focus has shifted.

Originally liaisons were service providers whose job was as described above. However, with the rise of for-profit healthcare there has been increasing pressure to turn liaisons into sales people whose job is to secure new business (read: "patients") for the home health company. When I took this part-time gig I said very clearly that I would be there to serve and not to sell, except to the extent that good service and outcomes themselves generate business. Nonetheless, there is a provision for bonuses attached to my employment agreement, whereby I receive a four-figure bonus any month in which I generate a specified number of referrals, a designated percentage of which have Medicare as the primary payer. (Medicare is the best payer for home healthcare.)

So there was Lucille, 93 years old, home alone most of the time, stairs to her apartment and probably dated fixtures and accommodations within it, with a broken back and a wish to go home. And Sue, with eight thousand dollars in new and due bills superimposed on the usual monthly expenses, and happening to be within striking distance of earning a bonus for the month of August.

Rabbit #1: Lucille's health and safety
Rabbit #2: Sue's sorry finances that month
Rabbit #3: A for-profit hospital and for-profit home health agency with stockholders who expect a good return on their invested dollars

No clinician ever should be in a position where his or her personal financial interests come up against the health interests of his or her patients, while a corporate entity looms over them all with an eye to maximizing investors' returns.

But it happens every day, many, many times a day, in ways great and small.

Lucille turned out to be a very alert, spunky senior with a sparkle in her eyes, a smile that would melt a stone, and determination that would move the rock of Gibraltar. She had walked to the bathroom by herself that morning, she told me, and then dressed herself. And she was eager to go home, having told the ortho manager very clearly that she wanted no part of any inpatient rehabilitation setting. I explained what home healthcare is and what we do, assured her that whenever she went home we would be there to provide those services, and said that she and her doctors would be the ones to determine when that happened and if any intermediate steps were needed. And I told the manager that I had done just that.

Lucille went to inpatient rehab, I never saw her again, and I earned no bonus that month. In fact, I'm proud to say that in the two years I've been doing this job I never have earned that bonus. To do so would require meeting an absurdly high quota, which in turn would require aggressive selling, promising services I know wouldn't be delivered, and pushing patients like Lucille towards home and home healthcare despite it being clear that they would be best served in another setting.

When I walk into a patient's room, in my white coat with my name tag bearing not only my credentials but also a large, easy-to-see attachment that says "NURSE," that patient must be able to know that I am there to advocate for his or her best interests. The day that doesn't happen is the day I've sold my soul to the devil.

Today, every day, in innumerable ways, every provider faces these situations. Some are blatant and glaring, others so subtle that they could be overlooked.

There are managers who receive bonuses for keeping costs down. By far, the biggest line item in a hospital budget is nursing services, so by cutting nurse staffing to a bare bones minimum significant dollars can be saved, and bonuses paid to managers and dividends to stockholders. Someone recently wrote that the appearance of nurses marching on the Capitol in Washington is the canary in the coal mine for healthcare. In May of this year nurses indeed marched, for safe staffing standards, and I'll tell you that the canary indeed is on its back and kicking very feebly. Nurses aren't agitating for better staffing because they want cushy jobs; most of us are terrible at sitting around and truly want to work and to serve. But a nurse cannot rightly attend to one critically ill patient while another who is just as ill waits, others whose needs are less urgent don't see a nurse for hours, and none receive instructions they can understand or the support they need to be able to care for themselves safely when they go home.

Last week a newly diagnosed diabetic patient with little command of English went home with insulin but no needles to inject it and no meter to measure his blood glucose. The doctor had written a prescription for insulin but not for needles, and the nurse was too busy to check to confirm that the orders written were complete. In two days the patient was back in the Emergency Department with a sky-high sugar level. Had he delayed any longer, he would have died.

Another day, at 3 PM doctors determined that a patient with a serious bone infection in his leg could go home with intravenous antibiotics. The infection was particularly difficult to treat, requiring two different and very strong drugs, and if treatment failed the patient would lose his leg and possibly die. Processing an order for home infusion takes some time, as a special infusion pharmacy must be contacted and someone must gather and send supporting clinical data for the pharmacist there to review and in turn complete and submit a request for insurance payment for the infusions. Once insurance coverage is confirmed any copayments that are required must be discussed with the patient and arrangements made to collect those. Then the drug must be prepared, all the supplies for maintaining the intravenous line gathered and packed, everything loaded onto a truck, and the order dispatched to the patient's home, which usually is many miles away and where someone must be available to receive it. Knowing this, I stood in front of the nurse and said, "Don't let this patient go until I tell you that arrangements for his home infusions are in place. He will need his last antibiotic dose for today here at the hospital before he leaves, as this late in the day there is no way to make a delivery to his home tonight." But the patient was discharged before he received the drug and without the blood test needed to assure that the dosage was correct, which meant the infusion pharmacy could not proceed with the home order at all because the dosage to be dispensed was unknown. There had been a discharge order, someone had arranged transportation earlier in the day, and when the van arrived the patient left, while the nurse was busy with another patient and didn't see him go. Mercifully, he was contacted and agreed to return to the hospital the next morning.

Physician colleagues regularly tell me that for-profit corporations are decimating their practice, adding layers and layers of paperwork and authorization requirements while cutting payment and denying services. Recently a paralyzed patient with bedsores was discharged from the hospital; since being home she has been unable to see a doctor because none will accept her "Medicare Advantage" insurance plan. The reason? That plan isn't paying even its own contracted physicians. Another of my patients is able to eat only small amounts of fruit and occasionally oatmeal because he is so sick from cancer spreading through his body and from the chemotherapy being used to treat it. He is skin-and-bones, and no longer able to climb the stairs to the only bathroom in his home. His "Medicare Advantage" plan refused to approve a request for a bedside commode. Excuse my language, but the insurance company that has taken his Medicare dollars for years will not give this man a pot to piss in. Literally.

A few years ago a senior physician with whom I worked for years at one of the university medical centers here shared his concern about young doctors graduating "with a mortgage but no house." Suffocating in debt for their medical education they cannot afford to practice in primary care and many other specialties, and often cannot afford to do the work they love, that which initially drew them to medicine. Instead they are casting about for any opportunity that promises to help pay the bills and keep their heads above water. Just this week another mid-career physician spoke of the reduction in payment and billing issues that soon will make it impossible for doctors in private practice to make a living at all, effectively forcing them into corporate or very "nontraditional" positions.

So the rooster is going to have to go to work for the fox guarding the hen house.

If car repair bills, veterinary expense, and property taxes could set someone like me in opposition to the best interests of patients like Lucille, what are these far more dire and ongoing circumstances likely to do to the lives and judgment of our doctors?

There are those among us who "tsk-tsk" and "cluck-cluck" about all of this, but think themselves somehow exempt. However, under their Armani suits or ragged jeans they are as vulnerable as anyone else when they land in an Emergency Department and find themselves looking up at name tags that say "NURSE" or "PHYSICIAN." And if the HMO didn't pay the doctor that month or the nurse had to come up with tuition dollars for a child and there is a dollar bonus attached to swaying patients' care one way or another, a burnout and fatigue factor operating from chronic understaffing, a pharmaceutical company ready to "take care of" a doctor who orders its drugs, and/or a ruthless insurance company out to serve its own interests, even the tsk-tsker and cluck-clucker are likely to experience first hand the consequences of pitting the best interests of patients and the best practices of clinical science against the greed of insurers, big pharma, and other corporate interests. And ultimately all will experience the fallout of simultaneously

Chasing Two Rabbits

1986 All Over Again

There's a kerfuffle in the media these days, a somewhat flippant term by no means intended to trivialize or minimize the underlying issues or the convictions people hold, but rather to describe the unfortunate tendency of many outlets to write and broadcast for the purpose of stirring up emotion, stoking the fires of drama, and furthering sensationalism and scandal rather than educating and informing. Whatever sells, I suppose. Whatever attracts advertisers, readers, viewers, and users of social media who will "like" and "share." In this case the tip of the iceberg is the matter of transgender persons' use of public bathrooms. With all the intensity and hype, though, it seems to me that important and pertinent lessons from the not terribly distant past have been overlooked. Indeed, in many ways today feels like 1986 all over again.

In 1986 hysteria over "the AIDS crisis," another public health issue centered around easily marginalized and often "undesirable" (read: gay and/or users of illicit intravenous drugs) populations, was mounting. First identified in 1981 and initially called "GRID," for Gay-Related Immune Disorder, by 1986 it was becoming clear that this scourge was spreading and that no matter how firmly heads were implanted in sand, the problem was not going to stay neatly confined to sections of New York, Miami, and San Francisco where "those people" were clustered, nor would it be limited to those who have sex with others of the same gender and those who use illicit intravenous drugs. While the problem was rampant in those marginalized populations, it had been easy enough to dismiss elsewhere, whether with sympathy, condemnation, prayer, or indifference, until "those people" and "their problem" ceased being cordoned off from everyone else, or at least so those uncomfortable with homosexuality and illicit drug use preferred to believe. Ethics and morality aside, it was a public health problem with implications for everyone.

Like most, in the early 1980s I had seen occasional mention of this thing called "AIDS" in newspapers and had heard a thirty second blurb or two on the radio or television, but the topic didn't have more than passing academic interest for me until 1984, when I met "Gary."

Between jobs and anticipating a possible move out of state, I was working as an "agency nurse," with day-to-day gigs in hospitals that were short-staffed. The advantage was that I could work as much or as little as I chose, and could choose from among the hospitals with which my employing agency was contracted. The disadvantage was that the hospital could cancel me with little notice and there might or might not be another assignment available, and that many of the contracted hospitals were short-staffed because, with good reason, no one wanted to work there. Indeed, there were one or two places to which I declined ever to return after working one solitary day. Another came very close. Indeed, it perhaps was the Cabrini-Green of hospitals, and, thinking of it that way, it now makes perfect sense that once my initial horror had worn off I became a regular on the unit widely acknowledged as the worst of the worst.

It was a 34 bed medical unit, and the place where the terribly ill and usually unresponsive nursing home residents were sent when they required hospital care. They had pneumonia and urinary tract infections that had become systemic, gaping bedsores that also were infected, and usually some other superimposed acute problem as well, such as a heart attack or stroke. They were fed through tubes, urinated through tubes, and sometimes pooped through openings on their abdomens. They drooled, choked, coughed, and spit. Some had tracheostomies; many required suctioning so as not to drown in their own secretions. They were incontinent and unable to move. Limbs were bent and "frozen" in place. The patients babbled or cried out. They smelled. They were but shells of their younger, healthy selves.

And for these 34 patients there were two - count them: t-w-o - nurses. 17 patients for each of us. The "Head Nurse," complete in white uniform and cap, sat at the desk, nursed the doctors and the charts, and ran herd on the nurses' aides who did the bathing, cleaning, feeding, and general grunt work that didn't require a professional license. And we two RNs ran up and down the long halls of that tired, outdated building, pushing medications into our charges, often after grinding them up and mixing them with some soft food that could be swallowed or with liquid that could be instilled in a feeding tube. We hung intravenous infusions and countless "piggybacks," smaller bags of intravenous medications that were on strict schedules and often so many in number that it was nearly impossible to schedule them all for one 24 hour period. We administered tube feedings, dressed those ghastly wounds, unclogged catheters and changed them when they came out or couldn't be rendered patent again, suctioned gallons of secretions from mouths and windpipes, and did it all with antiquated systems and equipment. Many days I watched the clock, mentally calculating how much money would be in my check if I walked away that minute, and how much longer I needed to stay in order to complete the assignment I had accepted.

But I fell into a rhythm and found comraderie with that Head Nurse and the various others who on different days managed the 17 patients who weren't mine, and this together with the fact that the hospital was walking distance from my home and the knowledge that I wouldn't be doing "temp work" forever, kept me going back.

There were some crazy rules in that place, and nothing is more fun than circumventing crazy rules. One was that employees must leave all personal belongings in lockers in the basement. Another was that there could be no food or drink on the units except what was provided for patients, and staff were not to touch that. As a temp, though, I didn't have a basement locker and so needed to stash my coat and other outerwear somewhere else. I also entered the hospital via the front door instead of the employee entrance, in order to check in at the Nursing Office and receive my assignment for the day. It took little time to figure out that a thermos of contraband coffee could be secreted under the coat over my arm and that a smiling, chipper demeanor was sufficient to distract the Nursing Supervisor's gaze from my burden. Later in the morning the Head Nurse on the unit would serve as lookout, watching for crotchety doctors or the Nursing Supervisor while I poured that blessed hot java for all three of us. It was the best joe I ever had, and the circumstances made it doubly delicious!

So in this time warp of a setting, with the sickest and most hopeless patients, minimal staff and fewer resources, you can imagine that "Gary" being admitted was a breath of fresh air. A tall, good-looking, thirty-something fellow, Gary was alert and communicative, he walked about, and he had a sense of humor and a generally pleasant air about him. There was a dismal, sparsely furnished lounge at the end of the hall with an antiquated video game, and I used to tease Gary about making me hunt him down in order to give him his medicine, as he almost always was in that lounge whiling away time playing that game. Gary had stomach troubles, and with 16 other patients who had extensive needs I didn't have time to delve into the details of his, or any, case, but I doled out medications and saw him off for various diagnostic tests. He'd improve and be discharged, but before long return.

One day the Head Nurse stopped me as I passed, speaking in a low tone: "That Gary says he has that AIDS. Do you think he really does?"

"I have no idea," I responded, but the seed had been planted.

Gary indeed did have AIDS, which in 1984 was a death sentence. It was years before I connected the dots and realized he had been admitted to that unit because neither his disease nor his sexual orientation would be a problem for any of the other patients, who for the most part weren't alert enough to know or care who was around them. I have wondered if some of the "nicer" and better hospitals refused to admit him at all, masking fear and stigmatization with language about not being prepared to treat that diagnosis.

Gary declined over time and eventually died, not long after the day he had a sudden, dramatic grand mal seizure. I remember a staff member screaming as I ran down the hall to find Gary thrashing uncontrollably in bed with IV lines pulled out and blood everywhere. I jumped in to protect my patient from injuring himself, and emerged well decorated with blood and other body fluids, because this is what nurses do. In 1984 there were no "standard" or "universal" precautions, and gloves, gowns, and other protection were optional unless patients were placed in specific kinds of isolation that required particular garb. It's a rare nurse who hasn't "worn" pee, poop, blood, vomitus, spittle, and every kind of drainage you can imagine. In 2016 we have more protection, but since the days of Florence Nightingale we've jumped in to do what needed to be done, in all kinds of circumstances.

Gary, who pretty much was the only patient who could talk to me in those days, had piqued my curiosity and I set out to learn about AIDS. I frequented university libraries and read everything I could find. While much was not known in those days, much else was, and I learned.

Persons with AIDS often are susceptible to a particular kind of pneumonia that does not affect those with healthy immune systems. In the mid 1980s there was one intravenous antibiotic that was used most of the time to treat that pneumonia, and shortly after I moved from doing temp work in the hospital to teaching and making home visits part-time there was a need for nurses to administer this infusion to patients at home. Every single nurse working at that home health agency resigned rather than be compelled to visit AIDS patients, except me. So I ran a lot of IV antibiotics into a lot of people with AIDS for many months.

"Doug" was a math teacher at a Catholic high school, and, fortunately, lived just a few blocks from me. No doubt terrified of his AIDS diagnosis and the assorted opportunistic infections that invariably accompanied it at the time, Doug perhaps was even more fearful of that diagnosis being discovered by his employer, in which case he would be fired for being gay. We arranged for me to visit him around five o'clock every afternoon for a two hour infusion. He finished work and left the school around 3:30, and this schedule gave him 90 minutes to run errands and do other essential tasks. I then would arrive and insert an IV line, being careful to find a vein high enough on his arm that the intravenous catheter wouldn't show when Doug reached up to write on the blackboard at school the next day. We visited as the infusion began, but soon it would make him sick and shortly after that he would fall asleep. When the infusion was completed I disconnected the line and flushed the catheter without waking Doug, and slipped out of his apartment, locking the door behind me. By the next morning he felt well enough to go to work, and we repeated the cycle every day. I have moved four times since those days, but eventually ended up in Doug's old neighborhood once again. To this day I don't walk by the building where he lived without looking up at what once were his windows and wishing we had known then what we know today.

HIV isn't a death sentence any more. Many people who have tested HIV-positive now lead perfectly normal lives with no detectable viral load. They are not ostracized on the most undesirable hospital units, and are far less likely to be fired from their jobs because of their sexual orientation. I would have wanted my children to have a teacher like Doug, and it still hurts my heart to remember the days of carefully placing that IV catheter where it would stay hidden while Doug taught.

In 1986 I accepted a position as Nursing Service Chief at the research hospital of the National Institutes of Health in Bethesda, Maryland, and the inpatient units and outpatient clinics of the National Institute of Allergy and Infectious Diseases were among those on my service. There researchers were working tirelessly to understand, treat, and prevent HIV/AIDS. The very latest science from around the world was at my fingertips; all I had to do was ask. Not long after my arrival at NIH I was asked to address the annual conference of the American Organization of Nurse Executives, speaking about HIV/AIDS and its implications for nursing administration and practice. The floodgates opened after that meeting, and as soon as I returned to Bethesda requests for more presentations began pouring in. I traveled across the country speaking to professional and managerial organizations, interdisciplinary clinical audiences, and even a small town in West Virginia where not only healthcare personnel but also clergy, business leaders, politicians, and regular folks turned out because even there people were coming to realize that this was a public health issue that affected everyone. Periodically I would call the chief of the lab doing HIV/AIDS research for NIAID and ask what was new, what was the latest thinking about this issue, and what might people anticipate in the future. Without fail he dropped what he was doing and went to my office to update me so the information I took to our colleagues and to the public across the country would be as current and accurate as possible. It was a heady but humbling time that had begun with Gary, the only patient who could talk to me in that hospital from hell, saw me through countless others in the hospital and at home, and then landed me in the national spotlight with the best science of the NIH behind me.

"Standard" or "universal" precautions were formulated during those days, and I incorporated them into my presentations. From that point on, I told audiences, we would treat all blood and body fluids as though they were infected, and not only with HIV, but also with hepatitis and potentially many other pathogens. HIV actually is a rather fragile little virus, I told them, while something like hepatitis is much more virulent, widespread, and risky to those around a patient. We had recognized that it was important to take precautions across the board. And today we do.

But shortly after I addressed the American College of Healthcare Administrators the owner of a nursing home who had been in the audience called me, astounded and incredulous. Did I really mean, he wondered, that he would be expected to provide gloves for all of his nurses' aides? Did I not understand that the residents of his facility were incontinent, and the aides had their hands in urine, feces, and other bodily substances all the time? Supplying gloves for that would be very expensive, he protested.

I massaged my chin a bit after it hit my desk and refrained from posing the obviously rhetorical question: "You mean you already don't supply gloves for workers who must handle feces and urine?!" It was "a teachable moment," and I sympathized with the caller's budget woes as I explained what would be necessary and why. In the early 1990s home healthcare agencies also rationed gloves, and if nurses ran out before the next allotment was due they either did without or purchased gloves themselves. Costs must be contained, we were told.

That doesn't happen any more. With apologies for a photo awkwardly cropped to omit the hospital's name, this is an example of the sort of thing that today is seen outside the door of every patient's room. Home health clinicians are required to carry the full array of "personal protective equipment," and nary an eyebrow is raised when they need more gloves, gowns, masks, or other supplies restocked.

No doubt this is more expensive than the days when nursing assistants provided personal care bare-handed and when gloves were rationed to professionals. But we came to understand that it was necessary, important, and in the long run, worth the money. An ounce of prevention is cheaper than a pound of cure, to adapt an old adage.


So now here we are in 2016 and the question of bathroom usage has arisen. And it has arisen widely, not just in the few hotspots that have made headlines. Indeed, a front page story in last week's Sunday New York Times noted that the Department of Education has received hundreds of requests for guidance about the "bathroom issue" from schools all over the country. What is to be done about transgender persons and public bathrooms in all sorts of settings?

Indeed, it feels rather like 1986 all over again. We have a marginalized population that perhaps many people would prefer just would go away, or at least stay out of sight, or be very inconspicuous . . . rather like the gay people and illicit IV drug users of thirty years ago. If only AIDS had stayed in those rather easy-to-ignore parts of New York, Miami, and San Francisco then maybe "those people" could have been helped with "their problem" without affecting or inconveniencing the rest of us. But AIDS didn't stay there; HIV was spreading across the country well before most people knew it, including those who run healthcare organizations. And transgender persons are among us everywhere as well, always have been, and always have used bathrooms, whether those who are uncomfortable with these facts like it or not. Of course it's fundamentally wrong to isolate, exclude, and segregate groups of people anyway; we know that "separate but equal" wasn't, Native Americans confined to reservations did not have the same opportunities and resources as others, and the internment of Japanese Americans during World War II remains a national embarrassment, to cite just a few examples that tarnish our history.

Our transgender brothers and sisters are among us, and they're going to use bathrooms.

Sexual assault, however, is a public health problem. It affects all ages and both genders, all socioeconomic and ethnic groups, all gender orientations and identities, and urban, suburban, and rural populations. Transgender persons perhaps are the very least likely to be perpetrators, but their need to use bathrooms like the rest of us has cast new light on the problem of sexual vulnerability. If we truly are worried about perpetrators disguising themselves as the other gender and entering public spaces to commit crimes, then perhaps we need to reconsider the configuration of public spaces. Are open locker rooms and dressing rooms truly advisable and safe if we are to take seriously sexual assault as a public health issue and if we identify nudity as a risk factor? Instead of providing private changing rooms for transgender persons, should these be provided for everyone? Oh my goodness, that would be expensive! Just as providing complete personal protective equipment in easily accessible locations for all healthcare personnel was expensive. Except that once public spaces were reconfigured there would be no ongoing expense, whereas gloves, gowns, and the rest are disposable and must be replaced after each use. But still we provide those disposables, and with good reason. To what extent is the current "kerfluffle" truly about bathrooms and transgender people, and to what extent is it about not-quite-wanting to acknowledge the very substantial public health problem that is sexual assault and the possible costs of solving it?

I don't know; this is not my area of expertise. But I feel confident that with transgender people having used bathrooms as long as bathrooms have existed, this is not the real issue underlying the disquiet of today. As a people we still can be nudgey about things sexual in 2016, particularly things sexually "different." Is this wanting "those people" who make others uncomfortable simply by being who they are, wanting them to go away if possible and at least be invisible or inconspicuous if not, is it a red herring, drawing attention away from the indisputable fact that everywhere, every day, people of all sorts are assaulted in the most intimate of ways and harmed for life as a result, and that we as a people have a responsibility to address this public health problem just as we did polio and child labor? Must our grandmothers, spouses, sons, best friends, business partners, or we ourselves be attacked before we allow that the elephant in the room is not named "transgender," but rather "assault"? To what extent are we willing to place others at risk in order to avoid the expense of protecting them? I'm not sure, but when I consider this issue I see much that looks to me like

1986 All Over Again.

Bring a Solution

Bring a solution.

As far back as I can remember I've told anyone working for me that I don't like surprises, so if there's trouble on the horizon tell me, we'll work through it together, and I'll have his or her back. But if my first clue that something might be amiss comes only when the excrement hits the fan, then my underlings are on their own while I join the lynch mob out to get them. And, when they do come to me with a problem, they also are to bring a solution.

These count as among with wisest dictums I've ever issued, serving to keep communication open even if some people have had to be scared into it, and keeping the focus on forward movement towards goals. Needing to bring solutions along with problems keeps people from being stuck at the level of the difficulty, forcing them to think about what would make things better. It decreases whining and blame-fixing, and effectively thwarts any tendency to try to delegate "up." But most importantly, it brings action ideas from those most closely associated with the problem, as well as closest to resources to solve it, along with insight into potential impediments to the process. The proffered solutions don't need to be perfect, or even very good. They just have to be the best jumping-off point the person identifying the problem can offer. And we go together from there. I will tell you that people generally solve their own problems, and often all I need to do is help clarify, provide resources, and/or keep obstacles out of their paths. It's always made my job easier and our results phenomenal, credit primarily to others than myself.

In this space I tell stories about problems, oddities, and ironies in healthcare, giving "outsiders" an "inside" look and bringing to light situations that otherwise might go unnoticed. From time to time when I've told of a challenging clinical scenario or a broken system someone will ask how such circumstances are to be fixed. And once again I find myself saying, "Those closest to the problem must bring a solution." We can help them do this, and then work together for positive change, but they can lead us to the starting line and then help us stay on course.

Over the next few weeks I'll suggest some jumping-off points that together can help to address the headaches and heartaches of health and healthcare in new ways. Here's the first one:

Help People Become Helpers

Fred Rogers used to tell of being frightened by things in the news as a child and his mother counseling him to "Look for the helpers" in those situations, because there always would be people working to help. We would do well to realize that there also are many people who want to help, who are willing to help, but who don't know how or don't realize their assistance would be valuable.

"Luke" was a seriously ill heart failure patient who also had diabetes, vascular disease, and a host of other problems. One of my favorite patients, he lived in an apartment in a Cabrini-Green high-rise during some of the worst times in "the projects." It was an ongoing struggle to keep him hydrated without overloading his body with more fluid than his heart could handle, to find the best cocktail of medications to help him without potentially deadly side effects, and to teach him and his family to manage his daily care with their few resources and dangerous living circumstances. Some days I would find him sitting on the side of his bed bloated with fluid, hooked up to oxygen, and struggling to breathe; other days he would be smiling and telling me that he had been able to walk to the bathroom and sit in the living room to be with visitors for awhile the day before.

But the time came when I couldn't manage his plethora of problems by myself with the physician only on the other end of the phone line, and all involved knew Luke needed to see his doctor, undergo some tests, and have his treatment plan adjusted. I made the appointment, arranged for the hospital van to meet Luke in front of his building, and hoped he would be having a good day when the time came.

But then Luke gave me a dose of reality.

"I can't go," he said.

"Why not? You must!" I replied, detailing all the reasons he already knew.

"Dem boys. I can't go out there with dem boys. I'm too weak. I can't take care o' myself. I can't even walk."

Luke looked at me with sheer terror in his eyes, and managing both his emotions and shortness of breath explained in winded bursts that the gangbangers hanging out in and in front of his building never would let him pass, and that indeed they would prey on a helpless old man, robbing him at the very least and perhaps harming, even killing him. Luke was a prisoner in his apartment.

I always had a police escort when I saw Luke, and more than once my escort pointed out cause for concern as we approached the building and instructed me to be attentive and prepared to leave suddenly and quickly. The "rules" were that once inside a home I was in charge of the clinical encounter, but going to and from the apartment or any time a danger arose inside the officer was in charge and I did as he told me. On the basis of the warnings I had received from my escorts along with my own observations, I had no doubt Luke was right about the danger awaiting him. The day before his appointment the most Luke would do was agree to scope out the situation the next morning and decide then if he dared venture downstairs to meet the hospital van.

There had to be a better option, I thought, so I called the police lieutenant who provided my escorts and explained the problem. Did he know anyone in the 18th District, where Cabrini-Green was located, I wondered, who might arrange to have a squad car nearby and visible around the time the van was to arrive for Luke? I still can hear his voice telling me, "I have a very good friend over there!" and that a call would be made. I think I fell asleep that night with my fingers crossed.

The next day dawned, bringing with it mounds of newly fallen snow. Clearing snow in Cabrini-Green wasn't high on anyone's priority list, so Luke would be facing one more hurdle. The likelihood of his making it to the medical center seemed to shrink with each passing hour.

The following day I headed back to Luke's home, ready to hear that he had missed the appointment, and trying to think of what more we could do at home with no direct physician evaluation or input and no further test results. Climbing the stairs to Luke's apartment was particularly onerous that day, probably because of the added weight of my own very heavy heart.

But once there and inside I found a calm, bright-eyed, smiling Luke! "Did you go to the doctor yesterday?" I asked.

"Yes, I did, and here are my papers from him," Luke responded, adding, And I couldn't believe what happened!" He went on to explain.

The previous day not only were there big drifts of snow between Luke and any place the van could access, but also the elevators in his building were out of service, as often was the case. But at the appointed hour for Luke to be downstairs there was a knock on his door, and "dem boys" were there, looking for him. No doubt initially terrified to see his visitors, Luke soon discovered they were on a mission of mercy. "Dem boys" carried Luke, in his wheelchair, down those flights of stairs, out of the building, through the snow, and into the van. And when the van brought Luke home "dem boys" carried him back to his apartment, through still more snow, up the stairs, wheelchair and all. Luke had no idea how they knew about his appointment or his need for help.

I, too, never learned exactly how this came to pass, but don't believe the police requested that level of service. Most probably an officer stopped by for a chat, explained that an old man needed to go to the doctor, and pointed out that it would be best if he didn't encounter any trouble doing so. I would bet that, once learning of the need, "dem boys" took care of the rest themselves.

Over the years I encountered many locals of the ilk of "dem boys." From time to time my police escort needed to intervene to assure our safe passage, and now and then we had an occasional mild shouting match: "You DCFS? [child protective services, never a welcome visitor]" I'd be asked harshly. "You blind?" I'd reply, brandishing my stethoscope, or perhaps, "You new in da 'hood, you don't know Sue-the-nurse?"

But when I needed to call EMS to transport a seriously ill patient from Cabrini to the hospital I asked "dem boys" for help every time. To be clear, EMS was in and out of those buildings all the time and didn't need "help," but being shown the respect implicit in a request for assistance shifted the tenor of the interactions with "dem boys" 180 degrees, and smoothed the way for the EMS crew to follow. Shouting was a standard mode of communication in Cabrini, and no offense was taken at raised voices. So I'd emerge from a stairwell and shout at "dem boys" hanging outside, "Hey, a little help here!," ignoring any initial menacing posturing on their part. "I have an old lady on the 9th floor who's really sick and needs to get to the hospital. The ambulance is on the way. I need to go to somebody else, so I need you to be sure the ambulance crew gets up to her and gets her out quickly and safely. Can you do that, and get them an elevator?"

"Dem boys" came through every time.

Over time as I grew more comfortable and well known in Cabrini I made more visits without the police, and without having to ask had "local security" looking out for me each time.

For a host of reasons, "dem boys" hadn't had much success in school, weren't highly marketable, tended to be rough around the edges socially, and couldn't have made a living on the wages of any unskilled labor positions they might have managed to secure, so a life of finding belonging among their "homies" while dealing drugs, running whatever cons they could, and looking for "opportunities" on the streets became their best apparent option. But no matter how tough, how hardened, how angry they were, when asked for help and told how to help, they delivered.

So the first part of my answer to the question of how to fix problems of health and healthcare is to stop looking so very much to the leaders and experts and politicians for answers and instead shift the focus to helping those in the communities and populations we serve become helpers themselves. This does not mean withdrawing or lessening services or support, but rather marrying those with the strengths and possibilities inherent among our patients and in their communities. They are closest to the problems, closest to local resources (make no mistake about who controlled the elevators in Cabrini-Green!), and may be the most credible "experts" to those at highest risk. Where they are more marginal, as "dem boys" certainly were, the best rather than the worst is most likely to be released in them when they are respected as people who can make things happen in their communities instead of treated as somehow lesser for want of sophistication, formal credentials, and finesse.

Likewise, if similar respect were shown the nurses, physicians, and others engaged every day in clinical practice when problems in healthcare delivery need to be solved I have no doubt tremendous insight and resources would emerge. As I write this I also am preparing a course in business development for home healthcare geared to executives and other leaders in the field, and have realized along the way that every idea I ever had that grew into a successful business-building, revenue-generating program came from my experience in practice, not from my tenure in executive suites or ivy-covered towers. I also have taken a gander at curricula of MHA (Master of Healthcare Administration) programs across the country and have yet to find a single one with a clinical component. Courses in finance, strategy, policy, leadership, the politics of healthcare, systems and structures, healthcare law, etc. abound, but there are none that deal with clinical problem-solving, how physicians and other clinicians are trained to think, how various professionals are educated and what they can or must do, issues in the development and management of medical practices, patients' experience in healthcare, the development and use of clinical science, or anything else pertaining to the substance of the businesses MHA students aspire to manage. Yet often it is these executives who determine policies and programs for patient care. I am reminded of a time when I was brand new and very green in my first Director position and summoned to tour new surgical suites under construction. Although I never worked in the OR a day in my life, since I was the Director I was asked to determine where equipment should be mounted for the surgical team to use during operations. Lord have mercy!

Just as "dem boys" needed to know their help was needed and how to deliver it, so avenues need to be opened through which the expertise and insight of those closest to healthcare problems, i.e., patients, communities, and practicing clinicians, can flow. Executives and politicians can work the system to make things happen, but those closest to the problems best know what the essence of those things needs to be.

I chose a career in nursing many, many years ago because my youthful self wanted to help people. What I have learned over the decades that followed is how very pervasive that desire is, with different people having different gifts for helping in different ways. Instead of seeing only "patients" or "personnel" or "problems," we would do well to see potential helpers who, with our respectful collaboration, may in the face of challenges prove best suited to

Bring a Solution.

When Your Care Is Not Their Priority

One would think that patient care is the linchpin on which healthcare turns and the most important consideration of providers, yet these days there are instances, too many of them, when your care is not their priority.

I shy away from this topic. It's painful to consider, risky to acknowledge, and might seem self-serving, you know, the whining nurse looking for sympathy and an easier ride. But the day nurses stop educating and advocating for patients is the day we lose our souls, and patients, together with those who care about them and who might one day themselves become patients, have a right to understand how healthcare works and a duty to join with us to make it better when there are deficiencies that threaten both individuals' health and safety and public health and healthcare overall, now even with its astronomical bottom line not assuring good clinical outcomes or even basic safety.

Just a few days ago popular medical blogger KevinMD sounded the clarion call, writing about the need to reduce nurse burnout (http://www.kevinmd.com/blog/2016/01/reduce-nurse-burnout-treating-nurses-well-treat-patients.html), and noting that "the most overwhelming parts of nursing are the constant system failures" and that "health care organizations . . . function in a way that requires nurses focus more of their limited time and attention diagnosing system needs rather than focusing on patients['] care." That's not about making life cushy for nurses; rather it's the reason your pain medication is late, very late; your call light unanswered for an hour; your questions not heard, much less answered; and the significant decline in your condition unrecognized. Your nurse isn't off sitting in a break room somewhere absently thumbing through a tabloid while chatting on the phone with her boyfriend and waiting for her nails to dry. More likely your nurse hasn't sat down anywhere since arriving at work, her boyfriend long since gave up hope of being able to talk with her at all on days she is working (if he hasn't departed to take up with a more available partner), and she can't remember when her work-worn hands, chapped from being washed so often, last had a manicure.

Writing in The New York Times the very next day, Robert M. Wachter noted the problem of "businesslike efforts to measure and improve quality" having the result that "even superb and motivated professionals . . . come to believe that the boatload of measures, the incentives to 'look good,' had led them to turn away from the essence of their work" (http://www.nytimes.com/2016/01/17/opinion/sunday/how-measurement-fails-doctors-and-teachers.html?src=me&_r=0).

Both writers describe the problem of provider burnout and turnover; beyond this there is an abundance of data demonstrating the correlation between such variables as nurse staffing and clinical outcomes. Today I add my voice, telling you that the problem extends beyond hospital walls and into your own living room, which is to say that the beast of burnout is alive and well in home healthcare, too, with its fire-breathing ways threatening the clinical assessment and care you receive from the one who perhaps is the only healthcare professional you currently see. While hospitalized, patients see many doctors, nurses, technicians of various sorts, and perhaps therapists, dietitians, social workers, and others, and behind the scenes pharmacists are reviewing every drug order, a radiologist reads x-rays before the ordering doctor ever sees them, "case managers" are overseeing care, and more, so if something is missed or an error made, there is some likelihood that someone will notice. But it's a different story at home.

There, it's you, and your nurse and/or therapist(s) who visit intermittently (and never together, as Medicare and others frown on that no matter the benefits of joint practice and collaboration. Indeed, "care coordination" is required, but not permissible face-to-face and in the presence of the patient. Go figure.). If your home healthcare clinician misses something or hurries through instructions so that you don't understand exactly what to do the consequences can be grave before anyone else has occasion to notice.

The Centers for Medicare and Medicaid (CMS) determine what Medicare will reimburse and how the amount is determined. Most other insurers follow the CMS lead. This has resulted in a lengthy and cumbersome assessment tool along with a slew of documentation and "quality" requirements that nurses and therapists must complete. CMS further stipulates exactly which services within each professional discipline are reimbursable, and the requirements beneficiaries must meet to be eligible for any services in the first place. Clinicians must document, repeatedly, precisely which qualifying services have been rendered and that patients who received these services were verified, over and over, to be eligible for them. Individual states toss in additional parameters their surveyors will assess, as do accrediting bodies and organizations that purport to evaluate various forms of quality and bestow distinctions accordingly, or not (the "Magnet" designation for excellence in nursing is an example).

So when your nurse arrives on your doorstep for the very first time, no matter what problem or diagnosis you have, no matter what you need, how you feel, what your questions are, or what you already know, she or he will "teach" you how to be safe in your own home, even in the absence of any discernible safety risks, dangerous conditions, or lack of understanding on your part. Your nurse is required to determine whether or not you have received influenza and pneumonia vaccines and if not, why; whether or not you are depressed; how long it takes you to rise from a particular type of chair, walk ten feet, return to the chair, and sit down again; your nutritional risk, probably using a tool that doesn't actually measure risk at all; the likelihood that you will develop bedsores, again often using a tool developed for inpatient use whose indicators as operationalized there have little meaning in the home setting, and more. Your nurse is required to have you demonstrate, not just explain, how you step in and out of the bathtub or shower, how you dress yourself, how you walk, and how you get in and out of bed and up and down from a chair. The nurse must assess your pain and ask you to rate it on a ten-point scale; if you have no pain at all you still must give it a number. The nurse must discuss advance directives, your rights and responsibilities as a home healthcare patient, what constitutes an emergency and what to do if an emergency arises, how to contact the home health agency and what to do if you have a complaint, your treatment plan, and if for some reason you are inclined ever again to let this person into your home, when she or he will return and how often. Your nurse may be required to screen you for ebola risk or any other hot button issues of the day, and will have forms to fill out and forms for you to sign. Then your nurse can begin to examine you and assess your particular needs. He or she must look at and make a record of all the medications you have on hand and must reconcile this with the list provided by the hospital or your doctor. If you need to learn how to care for a wound or give yourself an injection or check your blood sugar or anything else, the nurse must teach you that. The nurse must be sure you have at least a basic understanding of your health problems and know when and how to reach your doctor. And the nurse must be "nice," assure that somehow in spite of all of this you are "satisfied," and discreetly keep repeating that she or he is providing "excellent" care so you will remember that word and rate the agency's services as "excellent" when completing your post-discharge survey.

In addition, after leaving you the nurse will need to spend at least one to two hours documenting this visit and filling out the required forms. Yours will be but one of five or six visits your nurse is expected to make that day, perhaps one or two less if some of the patients are new to home healthcare. Your nurse will travel through all kinds of weather, traffic, and road conditions, will deal with the absence of parking spaces and house numbers, and will respond promptly to all calls and email. If you or any of his or her other patients need lab tests, your nurse will draw the blood and/or collect other specimens, drive to some lab, find parking, walk to the appropriate location, do more paperwork, and then go back to the car to resume the day, without an extra penny or allowance for the time and effort this requires. Your nurse will attend endless meetings, complete online courses and in-person training whether or not she or he already has demonstrated mastery of the topic, and jump through a seemingly infinite number of hoops to obtain supplies for you, whether a gauze pad or an oxygen machine or anything else. Your nurse will chase doctors, track down those lab test results and see that they get where they need to go and that appropriate action is taken, and make many, many phone calls from home at night. Your nurse also will have his or her documentation questioned by people who haven't ever seen you and often haven't seen any patient at all for years, if ever, but who want to maximize the dollar amount to be made from your case. And, generally your nurse will be paid a modest, flat fee for making each visit to a patient, period. This means that time spent going to and from labs, making phone calls, sitting in traffic, documenting, and all the rest is uncompensated, with meetings and required training often compensated at a lower, below-market rate because those are not billable activities.

If you believe nurses actually do all of this every time they admit patients to home healthcare please message me: I have a bridge for sale in Brooklyn that you'd just love, and some land in Florida, too!

For one thing, our patients are sick or we wouldn't be there. Often they are elderly and have many problems at once. CMS requires that they be "homebound," which, while not meaning that they need to be absolute shut-ins, does mean that going out is a hardship and is something they do infrequently, usually for essential medical appointments. Suffice it to say they're often weak and frail. And if people just have returned home from the hospital it's a sure bet they're tired, because these days hospitals aren't places where people can rest. Nurses know no one in these circumstances can tolerate hours of "assessment" and "instruction."

Nurses also need to self-protect, the "Don your own oxygen mask first" principle. If nurses work eighteen hour days in order to meet requirements and see enough patients to make the money needed to pay their bills they'll soon hurt someone or have an accident themselves. So something has to give. Similarly, being compensated on a per-visit basis and having a "productivity" quota to meet for their employers, nurses need to be sure to make enough duly billable visits. If patients cancel appointments, are admitted to the hospital, suddenly decide to go stay with family at another location, or miss scheduled visits for any other reason their nurses suffer financially and may be penalized for failing to meet the productivity quota, unless it is possible to add more and more visits to subsequent and already full days. That breeds haste, less than thorough care, and heightened potential for errors.

Whatever the specifics of your situation, this may mean all the drop-down boxes on your medical record aren't checked on the basis on an actual assessment. Your nurse may have determined that it was more important that you be able to manage your IV line than that you be screened for ebola risk or that you demonstrate stepping into the shower, but those parameters still must be documented. So in the best of circumstances the nurse makes an educated guess, and uses the visit time to meet your most pressing needs rather than marching through all the required items at the expense of your and/or his or her own welfare.

But it takes an experienced nurse with keen clinical acumen to know which corners safely can be cut, as well as a certain amount of savvy to avoid detection in doing so. The less experienced and less well initiated do burn out and move on, if they're not first caught in the snare of an unfortunate error of judgment or practice. And even the veterans can guess wrong, or, being human, be swayed by such self interest as the need to compensate for canceled appointments by packing more visits into a single day than can be managed safely and well.

Not long ago I was called to see a patient who told his Physical Therapist that he had developed a sore on his foot in the hospital and although he thought it had healed it was bothering him. I found a massive pressure ulcer that could not have developed in the short time the patient had been home, meaning that the nurse who admitted him to home healthcare and determined that there were no needs for nursing, and that the patient needed only Physical Therapy, never examined that foot, even though the patient's particular problem put him at high risk for just that sort of wound in just that location. Instead, the nurse documented that the patient's skin was intact with no lesions or irregularities present. The untreated wound that the nurse overlooked and the patient couldn't see subsequently had significant adverse consequences for that patient.

Even more recently I read the clinical note of the home health nurse who saw a patient I had followed in the hospital. The patient had a complex medical history, but was hospitalized for a heart attack and had needed open-heart surgery. The home health nurse documented extensive diabetic teaching, and not a word about the patient's cardiac status or care. The patient had been diabetic for years, and control of that condition was not a current concern. A colleague who read the same note remarked that it looked like it had been "cut and pasted" from a standard template, something that certainly would have made the documentation process easier and faster. Although I imagine the nurse who saw this patient was "nice" and the visit may have been very pleasant, the job that needed to be done wasn't, and the patient was left at risk and uninformed. I wonder if she remembered to respond that she had received "excellent" care when her post-discharge survey arrived.

A Physical Therapist colleague has told of discovering that another therapist had been caught pushing an elderly, blind patient to hurry her through the session, while yet another therapist saved time and made money by having patients sign multiple visit forms when only one visit was made. That's fraudulent, and if caught would have cost the therapist his license, a hefty fine, and perhaps jail time, but it happened.

I don't believe people choose careers in healthcare and complete rigorous collegiate and often post-graduate training because they want opportunities to push elderly blind people, ignore wounds, teach irrelevancies, or commit fraud. That these happen is an alarm all need to hear, warning that something is going terribly wrong among good people who once had high ideals, passion for a profession, and a commitment to service. All too often in 2016 paperwork and profit are being prized over patients, supposed measures of quality are valued above quality itself, and looking good is valued more than doing good. The toll on providers is beyond sobering, and when you are a patient the cost to you may be extreme

When Your Care Is Not Their Priority

That Which Sets Nursing Apart

Nurses and nursing have been thrust into a worldwide spotlight this week after panelists on ABC's "The View" made snarky, uninformed comments about Registered Nurse Miss Colorado's "talent" segment of the Miss America competition, which was a creative monologue depicting the life-changing story of her work with a particularly memorable patient. The backlash was swift and severe, with hundreds of thousands of nurses and their supporters blowing up social media and blasting conventional media as well. Many sponsors pulled or paused their advertising on The View, and television hosts from Ellen to Dr. Oz have scrambled for a piece of the action. There have been many well informed and thoughtfully articulated tributes to nurses from those who know us best, that is, our physician colleagues and others who serve side by side with us every day, as well as our patients, some of whom were so inspired by the nursing care they received that they later became nurses themselves. It has been a week of many proud and humbling moments after an initial ugly slap in our professional faces.

But for all that has been said about nurses and nursing, there remains a critical omission, a missing nod to that which sets nursing apart.

The questions that most define nursing practice perhaps are something like, "What are the barriers to this patient's enjoying the very best possible health?" and "What are this patient's strengths and the things that are working well, upon which we can help him/her build so as to be and do even better?"

The reason this approach and these questions are so important is that they transcend the purview of any individual healthcare discipline. Nobody other than a nurse builds his or her practice around assessment questions broader than his or her own scope of practice.

This does not mean nurses practice beyond their legal and proper scope; rather it means they know the resources to tap to meet their patients' needs, and how to coordinate those resources for efficient care with optimal outcomes. Only a nurse does this.

Physicians diagnose and treat pathology, and often it indeed is one or more disease processes that are significant barriers to optimal health. In those instances physicians order diagnostic tests and appropriate treatments, and often rely on nurses both to implement these orders and to assess and evaluate their effectiveness, alerting the appropriate doctor if problems arise. While this aspect of nursing practice requires great skill and keen clinical acumen, it is but a small part of what nurses do. Indeed, sometimes patients' healthcare needs do not require a physician's input at all, as there is no pathology present that requires medical diagnosis and treatment.

Consider "Shirley." Shirley is a determined, high-energy, almost-ninety year old woman who was headed to an appointment this week when she had an unfortunate encounter with a hose that careless workers had left stretched across a sidewalk. Down she went, evidently with unusually great force, and she couldn't get up. Passersby summoned help, and EMS soon arrived to take Shirley to a nearby hospital. There she was scanned and xrayed, poked and prodded, bled and monitored, and ultimately told she was badly bruised but nothing seemed to be broken, that she should wear an immobilizer on the knee that took the biggest hit when she fell, and that she should follow up with an orthopod as a precaution and see her primary care doctor as previously planned. She then was dispatched home. Later that night she fell again trying to walk to the kitchen for something to eat.

The next morning she called me.

The doctors had reassured her that all was well medically, but had not addressed the things that were wrong otherwise.

I had seen Shirley just one time, several months before. Then she had just been discharged after a hospital stay for a gut infection, and I determined that she was doing well overall but would benefit from some Physical Therapy to help her regain strength properly and safely. The Physical Therapist took over the case, and I signed off. But Shirley remembered the one visit I made, and she kept my phone number. And so the morning after that trip to the ER, when the sun barely had topped the horizon, my phone rang. "This is 'Shirley Holloway,'" a feeble voice said. "I don't know if you remember me, but I live at 1234 Anystreet and you helped me get Physical Therapy once before. [exhausted pause] I need services again. Different services. I would appreciate if you would call me." I did, and then called Shirley's doctor, because Medicare still requires a "doctor's order" before I darken a patient's doorway if Medicare is to pay the bill. The doctor agreed that I should evaluate Shirley, and then call with my findings.

When I arrived the doorman sent me right up, and said Shirley's door was unlocked and that I should just walk in. I did, and found Shirley settled into a recliner almost completely unable to move about. The leg that had taken the brunt of her fall was deep purple from the thigh to the ankle, and quite swollen as well. There were bruises on one arm and one hip, scraped and torn skin on both hands, and a lump on her head. Every time she tried to walk she felt so weak and dizzy that she thought she would fall. She wasn't hungry and had eaten minimally in the past 48 hours. Her blood pressure was low, and fluid was starting to accumulate in her lungs (two points I ascertained by using my stethoscope, a device the ladies of "The View" had dubbed a "doctor's" tool). And she was hurting, alone, and worried.

Shirley already had been worked up by doctors in the Emergency Room, and had been determined to have no pathology in need of medical treatment. So the doctoring was done. But clearly this patient had significant unmet health needs.

I explained why her leg was purple and how to manage the swelling and optimize circulation as well as recognize changes that would signify a problem requiring medical attention, such as blood clots or nerve compression. With Shirley's permission I snapped a photo of the leg and sent it to a Physical Therapist colleague; within minutes we had arranged for him to be there that day to work with her on safe mobility and additional management of the pain and swelling. I explained the hazards of being sedentary in that recliner for days, including the fluid in the bases of her lungs, and the mobility and breathing exercises needed to improve this. We discussed other common complications of decreased mobility, including the potential for everything from skin breakdown to constipation, and the need for attention to hygiene and nutrition. Shirley admitted avoiding drinking in order to minimize trips to the bathroom, fearing the she would fall going or coming. I explained the need for adequate hydration and the relationship between this and her blood pressure; Shirley quickly reached for a glass of water. I referred her to an organization that provides caregiver services, as she had realized she needed someone with her. I showed her how to clean and dress the torn tissue on her hands, and instructed her to "graze" on nutritious snacks throughout the day until her appetite for normal meals returned. We talked about what those snacks might be. I removed loose throw rugs from her hallway and explained the fall risk associated with them, and made sure she was wearing safe footwear with good support.

On reaching my office later I called the physician with an update, and received an, "Oh, ok" in response. There was no medical need, no need for doctoring at that point, nothing for the physician to do.

The next day I returned. Shirley asked if I minded if she iced her leg while we were talking, as the Physical Therapist had given her very specific instructions, and she walked (!) steadily (!) with her cane to and from the kitchen to retrieve the ice. Her bruising was better, she had washed at the sink by herself and changed the bandages on her hands, she was eating and drinking adequately, her blood pressure was normal, and her lungs were clearing. She had called for information about caregiver services, had prices, and was going to follow up. She was on the road to recovery.

Once the Emergency Room doctors had determined that there was no fracture or pathology present, no doctoring or hospitals were needed. But nursing was. And it was the nurse who recognized the need for Physical Therapy and for a caregiver and who made those referrals. It is the nurse who continues to coordinate that care and help Shirley move forward.

Physicians request consultations of other physicians, e.g., the internist requests the opinion of the endocrinologist, the surgeon asks the cardiologist to evaluate a patient before an operation, the hospitalist calls in the nephrologist when a patient's kidney function declines in the course of treatment. But it is the nurse who coordinates all the pieces and knows to add any that have been omitted. It is the nurse's perspective that is broader than pathology and treatment, mobility and function, speech and cognition, mental health and coping, nutrition, wound and skin care, community resource needs, and the functioning of any given body system. It is the nurse whose perspective encompasses all of these, and whose expertise includes knowing whom to consult and how to coordinate the players and assure the patient is progressing. And it is the nurse who is most likely to have occasion to know the patient well as a person and so determine the individual strengths and obstacles likely to be significant to his or her progress, or lack of same.

Physicians look for pathology to diagnose and treat. Physical Therapists look for problems with mobility, strength, and endurance. Occupational Therapists look for needs in functional status and cognition. Speech Language Pathologists look for deficits in communication, swallowing, and mentation. Social workers evaluate social systems and resource needs and provide counseling and referrals. Mental health workers evaluate thought processes and intervene accordingly. Dietitians assess nutrition, recommend meal plans, and teach therapeutic diets and healthy eating. Many specialists are experts in one body system, e.g. Respiratory Therapists in the respiratory system.

But it is the nurse, and only the nurse, who does it all. Not so as to supersede any other healthcare professionals' role or judgment, but rather in order to refer to them and to ensure that not only nursing needs, but also the patient's overall healthcare needs are met.

Nobody else has a perspective so broad and yet so narrowly focused on the particular needs of each unique patient. Consequently while there are many patients who don't need a doctor or don't need a therapist or don't need a counselor or don't need a specialist, there are precious few who, at least briefly, don't need a nurse. And while many of the tasks we do and many of the functions and responsibilities we carry out overlap those of our colleagues in other disciplines, that broad perspective and narrow focus is

That Which Sets Nursing Apart.