And What Will They Say?

One gorgeous late summer afternoon last year my dog's delight at the dog beach prompted me to seek a similar treat myself. So I hopped on my bike and headed for my favorite local sandy shore. Settling on a spot, I pulled out the old sheet that serves as a beach blanket, and bent to spread it out as I had a million times before . . . and saw stars. Sudden, sharp, jolt-out-of-nowhere, take-my-breath- away-and-don't-give-it-back pain in my lower back. I hadn't twisted or turned, hadn't picked up anything, hadn't bent or moved strangely, but in a flash I could barely move at all. No positioning, no deep breathing, nothing seemed to help, so I gingerly reclaimed my bike and laboriously trudged slowly home, pushing the bike and trying not to breathe too much, because it hurt too badly.

When my first-ever deliberate mixing of drugs and alcohol (a cold beer to wash down an over-the-counter pain reliever) and hours of rest interspersed with various efforts to find a comfortable position failed to bring relief, my neighbors put my shoes on my feet and gingerly carted me off to the Emergency Room. There I was asked repeatedly to sit down, despite having explained that if I did so getting up again would be excruciatingly painful, and perhaps impossible; examined by a most deliberate medical student; and graced with the presence of the attending physician for approximately 90 seconds, after which came the pronouncement that my problem was muscle spasms, which would go away if I took a narcotic pain reliever and a sedative, and then got a good night's sleep, thereby relaxing the muscles involved. I then was to find and see an internist, and have a MRI somewhere along the way. An injection of a narcotic was administered to jump start the process.

So, after the obligatory pass through the drive-up pharmacy window, my neighbors carefully deposited me back home, where I downed the prescribed pills, and went to bed . . . only to wake up unable to move because every part of me seemed directly connected to my back, and anything more than twitching a finger sent that sharp, stabbing pain shooting through me once again. In desperation I figured a way to turn over while keeping my back straight, then push myself up with my arms, and finally shift my weight forward until I was standing on my feet. I then could shuffle to the bathroom, and swallow more pills. I felt groggy and mentally cloudy, but the physical pain remained as strong. The earliest available MRI appointment was a week away. The internist was out of the question.

A physician friend who had been monitoring my (lack of) progress via text message finally declared that if those drugs weren't helping me it was clear that I had slipped or torn a disc and would need surgery; he had a wonderful surgeon standing by, and was coming to get me. Back surgery? Me? Oh, no! I insisted on one more day.

The next day dawned with equal misery: Drugged stupor, and excruciating pain. There were two more doctors I wanted to see, who practiced together in what we loosely termed an "Arthritis Clinic" that we took on the road to various senior communities. More friends to the rescue, and my stuporous self was deposited among the oldsters in my very own clinic. "I won't even touch her until she has that MRI," shouted the MD. But the Doctor of Chiropractic sitting next to him, who also happens to hold the MD degree but chooses to practice chiropractic medicine, grinned slightly, watched me move, listened to my tale, and repeated, "I know what this is." He got me on the exam table (somehow!), did some kind of manipulation for just a moment, and asked how I felt. The answer was, "Fine" [shocked!]. He showed me three simple exercises and told me to do them twice a day, recommended that a Physical Therapist friend stop by and give me a few ultrasound treatments, and promised that I'd be good as new in a week.

He was right.

The Emergency Room and doctor there cost thousands of dollars and yielded an incorrect diagnosis and ineffective treatment. Had I agreed to see the surgeon and undergo surgery the cost would have been much greater, and the surgery would have proven unnecessary. Of course I would have lost time at work and created additional expense for my company, not to mention the unpleasantness of the post-operative recovery period I could have anticipated. The MRI would not have been cheap, and would not have yielded useful information, and of course my insurance company and I paid for the drugs that didn't work. I can only speculate about what the internist might have done, and that speculation includes additional costly tests and referrals to more (expensive) specialists. My problem was capsular entrapment; the chiropractic manipulation released it, and the drugs didn't touch it because the capsule doesn't have a blood supply. The MRI would not have visualized it, and blood tests and scans would have yielded normal results.

I have written previously about my concern about the availability of health care providers to meet the needs of those who need services. The "cousin" of that concern is the larger issue of how we are to evaluate and treat health needs, who best can serve patients with different problems, and how these providers shall be paid. My hunch is that if the full spectrum of reputable health care providers were covered by insurance and were not subjected to MD "gatekeepers," treatment would be more holistic and effective, and less costly.

Modern medicine is wonderful, and its doctors (MDs) knowledgeable, skilled, and concerned. But it is but one perspective, and one set of tools for maintaining and repairing the incredibly complex human organism. It is about the diagnosis and treatment of pathology, according to one model, and one set of standards. There are others.

One fifteen minute session with a perceptive and skilled chiropractor did what hours in the Emergency Room, drugs, expensive tests, and surgery could not. The doctors were not wrong; rather they were practicing without the tools they needed to do the job that I needed done. They did the best they could with the knowledge and tools they had. The chiropractor brought another set of knowledge and skills; this one happened to be the one needed. Some years before an accupuncturist brought me relief for a chronic tendonitis that medicine and therapy had not touched. As a nurse, trained in the science of people's experience of and reactions to changes in their health states, and in teaching and collaborating to move people towards their health goals, I have knowledge and skills that MDs do not. Certainly they have knowledge and skills that I lack. Are patients not best served when we work together?

As a patient, I want my providers to have a full "toolbox" from which to select the treatments that are best for me. Sometimes those will be prescribed and overseen by MDs, but other times a psychologist, chiropractor, accupuncturist, nurse, therapist, or other professional will better serve my needs. A prominent physician at a major medical center once remarked in a presentation at a scientific meeting that one of the things he had learned from his "colleagues in reflexology" was the value of the light touch in a physical exam. Reflexology? Snake oil for sure, I would have thought. But this highly credentialed, accomplished, and respected physician and professor had troubled to learn what "colleagues" in that field had to offer, and had come away with something of value. My guess is that more of us could benefit from such open-mindedness.

There is the legitimate argument that many "alternative" or "complementary" methods and treatments remain untested by rigorous scientific research; this is important. However, it also is true that this research often is blocked or given very low priority in the competition for funds and support, thanks to the overarching influence of western medicine and associated lobbies and interest groups. So support for research continues to go primarily to the sorts of problems and methods that have received priority for years, with fine results . . . but also at the cost of equally valuable findings in other fields of health care practice.

The House and Senate now have passed "health care reform" legislation, and are beginning the arduous process of hammering out their differences to reach a compromise package that can be passed by both chambers and signed by the President. I still get a headache thinking about this. But whatever the final bill that emerges, I wonder not only who will answer the phone call for an appointment, and the call light at the hospitalized patient's bedside, and the other pleas for health care help. But also I wonder when those responding providers meet the patients who summoned them,

What will they say?

Will they have only the perspective, tools, and training of western medicine, or will they be able to offer a full complement of health science and skilled, reputable practitioners to evaluate and meet those patients' needs in the most comprehensive, creative, and cost-effective ways possible? What tools do you want your providers to have in their toolboxes? Perhaps it's time to let your legislators know.

Who Will Answer?

Today's morning paper is full of updates in the ongoing debate about health care reform, a misnomer, in my view, in that the bills on the table by and large are about access to and payment for services, rather than about the care that patients receive once they have that access and a means of payment (or not). Be that as it may, as another long week draws to a close I wonder about the question no one seems to be asking: When millions of uninsured and underinsured people suddenly have health care coverage, who is going to take care of them?

There is little doubt, and there are many data demonstrating, that people without adequate means to pay for their health care often defer needed services. Regardless of the specifics of whatever eventual "health care reform" package emerges, clearly a great many new patients suddenly will have viable options for securing health services that previously were beyond their reach. This is a good thing. We don't find it acceptable that our neighbors, family members, or we ourselves may have to live with relentless pain, growing tumors, untreated and uncontrolled chronic illnesses, acute diseases and injuries, poor vision, bad teeth, a wobbly gait, and more. Yet even now those who have insurance often are told that their doctors have no appointments available for weeks or months. Tests and consultations require still more waiting. Phone calls are not returned for hours, and some messages become lost entirely.

Providers are busy. A physician colleague remarked today that the primary care providers in his practice routinely work six long days every week, and have phone calls and paperwork to manage on the seventh. Another physician friend shared over dinner this week that while on call the night before she was awakened every two hours to deal with a problem, had to work the next day, and was on call again the day after that. My company often turns away referrals because there are no nurses or therapists available to see new patients. I know well the exhaustion of having too many patients crammed into a work day, with the attendant temptation to hurry, to cut corners, and to discourage questions and discussion; and I know the oversights and errors that can result. As a more senior clinician in a leadership position I sometimes make those difficult-to-staff or unscheduled emergency home visits myself, and more often than I like to think find evidence of shortcuts taken, skilled services withheld, and significant clinical data overlooked, no doubt because the nurse who preceded me was busy and tired.

The doctors and nurses with whom I speak are not happy in their work these days, and many are leaving their professions. Last year a doctor described seeing a new patient in his clinic, doing a complete evaluation, and then providing a treatment. After all the associated paperwork had been completed and submitted the patient's insurance company paid the doctor $12.00. Twelve dollars. This doctor is no longer practicing medicine, except for occasional appointments after his new, non-medical job is over for the day. I know of many other physicians who have closed their practices and left medicine in recent years. Two weeks ago I sat in a conference of medical superspecialists and listened to concerns about the paucity of "new blood" entering the field, as young doctors choose specialties with easier hours and fewer demands. Primary care doctors are closing their practices; new doctors are not choosing primary care or many specialties, opting instead for careers in fields with steady incomes, regular hours, and no "on call." So as scientific knowledge burgeons, the number of those who would put it to use in patient care dwindles.

The "nursing shortage" has been in the news for years. Actually there are plenty of nurses out there; they just no longer practice nursing. After a few years of long hours, physically and mentally taxing work, toxic organizational cultures, rigid rules, and lackluster compensation and benefits, many nurses move on to other lines of work. No longer confined to traditional roles, many women do not choose nursing, and those who do are aware that there are many other options available to them. The knowledge, skills, discipline, and insight that make people good nurses also make them good business people, lawyers, administrators, politicians, clergy, and more.

With the national economy in the sewer and thousands of jobs lost, there has been an influx of students into nursing and allied health programs, particularly at community colleges. While it is good to see people from a wide range of backgrounds coming into and enriching the health care professions, one must wonder if he or she truly wants to be in the care of a nurse, therapist, or other provider who went into that line of work only because his or her real estate, dot com, banking, or manufacturing business failed, and entered the profession with the minimum credential for licensure. The shortage of qualified faculty to teach these students is real as well.

The posturing and politicking going on in Washington as "health care reform" is discussed give me a headache. But what gives me a heartache is that few seem to be remembering that when we say someone has a right to receive something, such as health care, we implicitly say as well that someone else has a duty to supply it. Clearly it is not acceptable for injured workers to go untreated, for isolated elders to need to choose between food and medicine, for children to be denied preventive care, and more. But when "health care reform" passes, in whatever form it may take, and millions of the previously uninsured and underinsured persons join the rest of us in the quest for health care services, when we call for doctor appointments, ring for the nurse, or otherwise ask for help,

Who Will Answer?

This question needs to be on the table alongside those of access and payment, for without a coherent plan for all three, all will fail.

"You Tell It Good"

Chicago's Oak Street ends on the east at the intersection of Lake Shore Drive and Michigan Avenue. From that corner one looks out over Oak Street beach, down the Magnificent Mile, past tony boutiques, and over the vintage condos and modern highrises of the Gold Coast. Walking back down Oak Street to the west just two or three blocks one encounters subsidized senior housing buildings, the "el" tracks a block further, and just past that, literally on the other side of the tracks, two thick metal posts flanking an Oak Street that suddenly has become rutted and broken. And past those posts ("Will the car fit?" I wondered my first time through), the remnants of Cabrini-Green, the infamous public housing project.

In the fall of 1997 the nurse who had served Cabrini for my then-employer left abruptly, and the word came down that if I wished to keep my job I would take a turn as a visiting nurse seeing Cabrini residents. Had there been another job on the horizon I would have taken it, and when I made that first trip between the metal posts, heart in my throat, off-duty Chicago police officer at my side, I fully expected to be on the job market as soon as the holiday season passed. But in the meantime something happened: I fell in love.

Cabrini was dangerous in those days, there's no doubt about it. Gangbangers loosed pit bulls on one of my colleagues and her police escort. Gunfire rang out nightly. Even in broad daylight there were those whose judgment was impaired by the effects of alcohol and various street drugs. Poverty and hopelessness triggered acts of desperation.

Cabrini was in disrepair, and dirty. The elevators ran sporadically, and weren't safe when they did, so "my" cops and I climbed lots of stairs. My record was 34 flights in one morning, a number duplicated many times. Vomitus, urine, feces, trash, broken bottles and their contents, rodents dead and alive, and drug dealers plying their trade were common in the stairwells. The most meticulous housekeeper couldn't forestall the cockroaches invading from neighboring apartments. Garbage accumulated on the walkways despite the seemingly perpetual sweeping of workers and residents.

And there was resignation. I treated people who wouldn't even trouble to wake up, much less get out of bed, for the nurse. Many others did not take their medicine, keep their appointments, or attempt to heed counsel about ways to improve their health, having learned over the course of years that nothing they did made a difference or mattered much anyway. No food, no money, no shoes, no problem. That's just how it was, how yesterday had been, how tomorrow would be. Get by somehow, or not.

What was I to do? I wondered this more than once. Many times during my initial evaluation of a patient I felt overwhelmed and helpless: "I can't do this. I don't know what to do, where to start, what to try." But I had to go back, or lose my job. And so I went. And learned something: No matter how hopeless a situation seemed during my first visit, by the second visit somehow an avenue opened. I never knew what it would be, where it would lead, or quite how the patient and I would proceed, but the next step to be taken, an opportunity to be explored, a need that could be met, something, appeared. I learned to go back. To show up. Because it was all I could do. And that's when the miracle happened.

Showing up was what was needed. Every program, every service, every charity had tried and failed, it seemed. The history of generations that had grown up knowing only that life, with no other role models, resources, or life skills was too daunting. But those programs, services, and charities had their own (undoubtedly well intended) agendae, and crafted by and large by educated, professional, white people, those agendae simply didn't fit. How far can you walk in shoes that don't fit? Not very, I'd wager. When something doesn't fit we leave it behind, no matter how "good" it might be.

But I am educated, professional, and white. Only the grace of helplessness and powerlessness moved me to set aside whatever agenda I might have had and simply show up to see who and what was there, and what we might do. And see I did. And connect we did, as well as my world and that of Cabrini can.

Little remains of Cabrini now, but then there was true community. The gangbangers, dope dealers, and ne'er-do-wells constituted but a small minority, and were as disliked and distrusted by the other Cabrini residents as by "outsiders." In the "real" community, people knew and cared about one another. Children always had a family member, older neighbor, godparent, "play" relative, or friend to take them in. Somebody had a little money, somebody had a car that could be coaxed to life for an essential errand, somebody had food to spare, somebody knew what had happened to the patient I couldn't find. Although I never saw evidence of a family meal, I saw a lot of cooking: Cooking for the church, cooking for a sick neighbor, cooking for a party or holiday. Sunday mornings were a sight to behold: Church ladies in bright dresses and big hats; gentlemen out of their worn jeans and into dapper, if worn, suits; children scrubbed and polished. Neighbors actually were neighborly: They visited on the streets as long as the gangs were quiet, they visited in one another's homes, they helped if someone was sick, they passed judgment on conduct not up to their standards. And they welcomed visitors, be they even professional, educated, and white, as long as those visitors were authentically present and not there to superimpose alien ways . . . that is, as long as those visitors sincerely and genuinely showed up.

The people of Cabrini touched me as few have (although perhaps that is because I fail to show up as authentically elsewhere): The grandmother whose son was in jail and daughter on drugs, who had adopted her grandson and "forgotten" that homework was important (Did she ever know? Did her son and daughter do homework before jail and drugs?). The five year old who asked everyone in his home for a pencil, because the kindergarten teacher had said he needed to bring one to school. And every person scolded and cursed him for asking, interrupting, crying, disturbing them. Later he attempted to scale the refrigerator to reach a box of cereal to make himself breakfast, only to be chided for doing something dangerous instead of asking for help. If he asked he was scolded, if he tried to help himself he was scolded. In a few short years a street gang would offer welcome refuge. The blind grandmother contracted in a fetal position with 18 pressure ulcers on her body, lying in urine on a worn bed in a dark room with a sticky floor and an exhausted daughter caregiver. My team and I got those wounds healed and that grandma walking, and the daughter cleaned that house and cared for her mother to the day she died. The amputee whose cancer surgery left her with a crater in her belly that became infected, trapped in a highrise with an elevator that didn't work. The therapist taught her to strap on her old prosthesis and navigate the treacherous stairwells so she could get to her doctor, and soon I saw them walking all over Cabrini. The young men with gunshot wounds, all innocent victims who just happened to be in the wrong place at the wrong time; just ask them, they'll tell you. And it will be quite a story, I promise. The man who pored over the Bible and talked of serving God, but didn't hear his seriously ill wife begging for help from the next room. The old woman whose rowhouse was so clean I would have eaten there, the many who cared for their families and neighbors, the single mom rearing six children who received scholarships to private schools while she worked two jobs (she died, and one daughter is in jail, I learned last week). The young wife who refused to accept her husband's terminal diagnosis; he recovered and she died; go figure. But the love in that home was palpable. There were so many. And I was privileged to show up, and listen and watch, and learn their stories, and try to figure out what I might offer in return. I kept that job until the company that employed me was sold years later, ever astounded that my onerous assignment had been transformed over a few months into a labor of love.

One Sunday morning two or three years ago I delivered a box of excess fresh produce to a mother and daughter recently settled into a newly constructed apartment on the fringes of the housing project. Longtime Cabrini residents, they talked of its history and of all that was lost when the problem was reduced to no more than substandard housing and residents scattered far and wide to "better" dwellings. Families and neighbors who had been like family were separated, stressed-out parents and caregivers lost their support systems, suddenly there was no one to go for medicine or groceries, no one stopped in to visit, there were rules against congregating in "public areas," and with children no longer able to stop at Grandma's or Auntie's after school, working parents had to choose between their livelihoods and their children's safety. Mother and daughter spoke of the old life and the new, and of how if they could they would give up the nice new apartment to have the connections, community, and caring they had before.

"You should write a book," I said. They laughed dismissively. "Really," I insisted. "This is a story that needs to be told. The lives people had, complexities incorrectly reduced to a single issue, and the unfortunate aftermath. A people and a way of life are being destroyed, and their story needs to be told."

There was silence, nods. And then the mother spoke: "You write it. You tell it. Because you tell it good." And the daughter's nod added the period and underscore: "You tell it good."

I don't know that I can tell their story, or anyone's, including my own, "good," or even well. But having been given the gift of access to their lives, and to the lives of so many, and the gift of so many opportunities as a professional nurse, for three and a half decades and counting, it is time to try. Time to open a new dialog, time to offer whatever insight and wisdom those years might have given me, time to raise bothersome questions, time to be a bridge between those who have gone before and those who will follow. Come with me through this history and into whatever the future brings, and I shall do my very best to

tell it good.