"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