"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?"

The Club

,"One. In thirty years, just one."

The inpatient units of urban medical centers are busy places, and a week or so ago this one was no exception. Every chair in the central station area was occupied by a being focused on a task, but those beings frequently and quietly interchanged as one moved out into the corridors and patients' rooms and another came to the desk intent in consultation or gazing with furrowed brow into a computer screen. So much activity, an ambience of organized clutter, ample space to move about, but standing still risky business. Phones, faxes, pagers, someone's (forbidden in this area) cell phone, all those computers, occasional laughter, an ongoing white-noise-like drone of multiple simultaneous conversations.

I watched Ann as she spoke, and all the rest faded into background oblivion. Now in a senior inpatient position, she worked for years, thirty of them, as a nurse in the Emergency Room. And saw it all and did it all. The homeless and other down-and-outers tended to congregate there, and Ann took them in, treated their maladies of the moment, and let them hang out, where it was warm (or cool) and dry and safe. She had many, many "regulars" returning frequently with the same or still another problem, and for thirty years she dispensed emergency treatment, a human connection, access to a temporary safe haven, and a push in the right direction given in the eternal hope that the recipient would seize the momentum and continue on a constructive path. But the regulars kept returning, with another wound, another illness, another accident, the same old problem flaring up again, or just a desire for a safe place to be indoors for awhile. More treatment, the human connection again, the temporary haven, another "push," and out the door . . . only to return in a week or month or whenever.

And such characters they were! One was tattooed literally from the base of his skull to his feet, and a colorful fellow he was, too, in more ways than one. In and out of the ER for years, a "regular" dubbed "Tattoozie" by the staff. Here he is again, another problem, another story, patch him up, joke with him, give him the little lecture about the need to change his ways, and send him on his way until the next time. Eventually Tattoozie faded away as so many did, and the ER staff would wonder from time to time what had happened to them all, knowing that most probably whatever it was wasn't good, but not having time to wonder too much, because the next generation of regulars, and others, was streaming in the door.

Years passed, and one day while working in the back of the ER Ann was paged and asked if she had time to go up front, because someone was there to see her. She went, and approaching the front desk saw a tall, impeccably groomed man in a three-piece suit waiting for her and looking remotely, very remotely, familiar. She stared.

"You don't remember me, do you?" he asked.

As Ann studied his face for a moment, trying to clear the cobwebs from the deepest corners of her memory, he turned his head slightly, and just above the crisp white collar around his neck she saw the tip of a tattoo she once knew well.

"Tattoozie!" she exclaimed! "What happened to you?"

"I got Jesus," he responded, "and I've always wanted to come by and thank you for all the times you took me in and took care of me."

The sense of my eyes moistening slightly was a welcome relief after hours in the dry hospital air, and I blinked and told Ann, "I know. I was the nurse for Cabrini-Green."

Someone hit the "slow motion" button as Ann's and my eyes met then. She said quietly, "Then you do know." Turning away she fed a page into the copy machine before looking back to me. "Thirty years. In all those years only one came back. Just one."

"Yes, but you got one," I said quietly.

"I did. I got one." A small smile, our eyes met once more, and click. Confirmed mutual membership in The Club. And the pagers and phones and conversations and person trying not to be impatient in waiting for my seat came into focus once again.

There is a club-like camaraderie among those who have served in the trenches, be they in battlefields, on the front lines of wars on crime, or at the juncture where the ill and injured meet those who work to make them whole again. I am of the generation that served in Vietnam, and have heard countless times, "You weren't there, you don't understand." And I know that I don't and can't understand. I rode with Chicago police officers for years as they escorted me in and through Cabrini-Green. We swapped stories, I listened to their accounts of what had happened the night and day before, they learned to help me with bandages, counseling, and reconnaisance missions through the trash to locate incriminating evidence to explain why a blood sugar was elevated or a patient suddenly presented with an "altered" mental state. But when one of their own was killed in the line of duty and I would join the thousands of police officers from around the country paying their respects at the funeral I did not need to be told that I did not understand their loss. I understood mine, which was bad enough. But theirs would remain forever unfathomable to me.

And so it is among those of us who have shepherded the Tattoozies of the world through Emergency Rooms for thirty years, downed cold pizza and bad coffee in hospital corridors at 3 AM, banged on a chest and breathed our own breath into a "coding" body only to watch helplessly as it slipped into the next world, watched the sun rise through dingy hospital windows after a 12-hour shift that seemed at least three weeks long, caught new babies coming into this world and the tears of parents when other babies left it, saw the patient who wasn't supposed to make it walk out the hospital door on Christmas Day to go home to celebrate with family, and sat in stunned silence as the "routine" case went terribly, inexplicably wrong and the consequences were dire. "Gray's Anatomy" and "House" and "HawthoRNe" and all the rest don't begin to capture the bond that starts growing over undergraduate textbooks and the anatomy lab, through the development of sufficient knowledge and skill to work with confidence, to achieving a practiced eye and inexplicable intuition that "knows" in an instant what's afoot and what needs to be done. Often Club members speak in shorthand, or not at all, when they communicate; they know. And when seconds count that knowing is invaluable.

There's strong mutual trust and respect among Club members; there must be. For when the patient's life, the integrity of the team, and our individual livelihoods are at stake time and time again and every moment lost means heightened danger, we must know that our colleagues have our backs, and we theirs, so that together we can move a seamless operation forward with no looking over shoulders, our own or one anothers', to be sure all is right and proper. If that trust is violated, expulsion from the Club is prompt and permanent. This is not an act of anger, rather it is one of necessity and sadness, and we may speak for years of our hope that the expelled member availed him- or herself of assistance and was able to begin anew down a better path. I suspect the severity of this action is one reason doctors and nurses sometimes are tempted to protect a wayward colleague whose practice is not quite up to par or who has made errors in judgment. There is a sense of "there but for the grace of God go I," and a fervent hope that the troubled associate will see the light and make it right in time. We are human, we are capable of corruption and greed. Ignorance, fatigue, and short-sightedness exact their toll on us as they do on everyone. We have complementary strengths and different weaknesses, and no doubt the highest good is served by our truly collaborative efforts. But "outsiders" cannot know the nature and strength of the bond that ultimately unites us.

There are "associate" members of the Club, who are the therapists, counselors, dietitians, and so many others whose knowledge, skill, and contributions are in no way lesser, but whose services are more narrowly focused and temporally limited. There may not be a Registered Dietitian or Physical Therapist in the hospital at 2 AM on the Fourth of July, but you can bet there are doctors and nurses. For patients to heal and achieve the most complete rehabilitation possible nutrition and therapy are critical, and it is dietitians and therapists who will discern when a subtle change in a lab value indicates a need to tweak a tube feeding or when a slightly misplaced assistive device portends a fall. But those aren't the colleagues we expect to make decisions at the juncture between life and death, and few have had as much cold pizza and bad coffee watching the sunrise through dingy windows at 5 AM as have nurses and doctors.

And there are "emeritus" members of the Club, those who leave clinical practice to pursue careers in such fields as administration, bench science, medical sales, and teaching. These folks are respected as once having been "one of us," but with the awareness that they have lost their "edge," and have not experienced the real work of clinical practice in the circumstances of today. Health care changes rapidly these days, and those who harken back to their experience of even a few years ago already are "out of the loop" of contemporary practice and its context. This is not to denigrate administrators, basic scientists, business people, or educators; their roles, too, are important and respected. But they may not be the people you most want to call when decisions about your health need to be made.

There is even "cross-Club communication." Some years ago I treated Willie, a Cabrini-Green resident who, with diabetes, high blood pressure, and a myriad of other problems, had undergone bypass surgery on his legs in an attempt to improve his circulation and prevent amputation. The surgery failed, and Willie was left with gaping wounds on both legs, and little blood supply to help heal them. So I visited Willie for a very long time.

One day I walked in, looked at him, and said, "Willie, you're going for a ride." He nodded as I picked up the phone to call "911," and knowing Willie's strong dislike of hospitals, that nod was all I needed to see to have my decision validated. Now I don't remember what problem Willie had that day, but I set about completing my evaluation, gathering data for the paramedics, and preparing Willie for transport. The ambulance came, left with Willie on board, and "my" cop and I began the long walk down the highrise stairs.

"Suze, how'd you know he needed to go?" the cop asked me. He continued, "I mean, I'm not saying he didn't. And as you were doin' your stuff I saw what was happening and could tell that he really needed to go. But you just walked in the door and said, 'You're going for a ride.' You hadn't touched him, and he hadn't said anything. How'd you know that?"

How to explain. I looked at him, a tactical team member turned homicide detective, and countered, "How do you know who's the bad guy?"

A pause.

"Oh," he said, knowingly. Click. One Club meets another.

That conversation with Ann ten days ago was important, because I go to that medical center as an outside liaison, representing my home care company and helping to transition patients from the hospital to home. But although my name tag says "RN," there is no way for people to know if I am an active or emeritus member of the Club. In fact, I continue to maintain a clinical practice. And this is not, as I suspect my boss believes, just to "keep my hand in" practice or to satisfy a personal interest akin to a hobby. It is also because I know that to work effectively with the doctors and nurses who send their patients to my home care company I need to remain an active member of the Club. I must keep my "edge" razor sharp, speak their language, and be able to translate patients' at-home needs and circumstances into words their hospital- and community-based doctors and other providers can understand. I need to be fluent in the shorthand of the day, and to demonstrate that I still have my colleagues' backs, no matter our roles or professional affiliations. I hold a fancy title about "business development" now, but to be successful in my work, to grow and develop my company, to build relationships that matter, and to assure that clinical excellence happens, my most important credential is my intangible membership in the Club. It's not just about being able to answer a patient-care question that a non-clinical person could not; rather it's about speaking the language and having a common bond of experience with our collaborating providers. I made sure Ann knew that my Club "membership card" bears the date "2010."

Particularly with so many people unhappy in their work, or lack of same, these days, I am grateful for the opportunity every day to touch lives and make a difference, and that is the work of clinical practice, of Club membership. It took a year and a half, by the way, but Willie's legs healed and he recovered. The next time he got in trouble, he called me, and when I picked up the phone and made a plan with him, he said, "Thank you." (Hey, Ann, I got one.) And for all the frustrations and inefficiencies of the health care non-system these days, the next time you pick up the phone to call for help, thank your lucky stars whether or not the person responding has a fancy title or a corner office in an executive suite, as long as she or he is a member in good standing of

the Club.