Paradigms, Protocols, or People?

There are scientifically based paradigms and protocols for managing patients with many chronic conditions, and this is a good thing. Researchers have figured out what drugs most often work best and in what combinations and sequence they should be tried or added, and this is broken down according to the level of severity of a patient's disease. Recommendations are ranked according to the "strength of evidence," so providers easily can tell if there has been a great deal of very compelling research supporting a course of action, or if it is a "best guess" based on more limited study. Providers know to adapt recommendations to their individual patients, but questions may be raised if significant deviations are noted. Outcomes tend to be notably better with this approach than they were in the days when doctors relied mostly on their own individual experience and habits, with treatment depending more on who the doctor was than on how the patient was.

Albeit with less evidence, home healthcare protocols have arisen from these same data. While physicians continue to determine which drugs patients are to take and how their medical management unfolds, home healthcare providers have tended to look at the medical protocols and on that basis determine what teaching and interventions patients should receive at home. A particularly common practice is "frontloading" home visits, with nurses and therapists visiting patients frequently early in their home healthcare tenure, and tapering off over time as patients, theoretically, progress clinically and become more independent in managing their own daily care. Likewise, standardized teaching tools have been developed, with the expectation that patients will march through them and emerge informed and inspired to make positive changes and move towards better health. Sounds good . . . and sorta seems obvious, doesn't it?

Except it doesn't work.

Protocols and paradigms manage diseases. But home healthcare providers manage people. Or, more accurately, help people better manage themselves. And people are complex, inconsistent creatures with rich, multifaceted lives wherein health is but one priority and circumstances are in flux. Complexity, inconsistency, and flux coupled with the general messiness simply of being human and having a plate full of competing and often conflicting needs and demands just don't fit into paradigms and protocols very well. The best treatment plan in the world won't work if it isn't carried out, and it won't be carried out if it doesn't fit reasonably well into the real lives that real people actually live.

So as we look at the patients who are not progressing and who cycle through hospitals for frequent tune-ups only to go home and return again a short while later with the same problems or worse, instead of hammering them with the protocols perhaps we should trouble to discern who they are as people and what is needed for them to be and do better.

Consider "Miriam," who at almost eighty-five years old has heart failure, severe kidney disease, diabetes, an irregular heartbeat, vascular disease, arthritis, chronic lung disease, high blood pressure, and more. Hers is without doubt the most complicated medication regimen I ever have seen in a home setting, with one pill to be taken an hour before any others and before eating, many more to be taken with food at various times during the day, others at bedtime, some "as needed," one with a varying dosage on different days of the week and another with different doses of the same drug to be taken at different times of day, one where the dosage changes frequently based on blood test results, "water pills" to be taken far enough apart that they don't overtax her precariously functioning kidneys but not so late in the day that she must be up frequently at night, insulin injections four times daily, inhaled medicines administered with three different types of devices at various times during the day, and a medicine that is applied topically to her skin. Miriam monitors her weight daily, her blood sugar multiple times a day, her blood pressure, her oxygen saturation level, and, when necessary, her temperature. She manages oxygen equipment and a machine that helps her breathe at night. She walks with a walker, showers on a chair, and carries a bucket back and forth between the toilet and the commode at her bedside so as not always to need to dash to the bathroom when nature calls in the middle of the night. And she does all of this well, very well. There is nothing more of it to be "taught," nothing in the standardized tools that she hasn't seen many, many times before, and nothing that seeing my face frequently, because some protocol says I should show up, would accomplish. Yet her condition is unarguably precarious.

What threatens to do her in? Her wonderful, huge, loving family, that perhaps is the envy of all who know them!

One of ten siblings herself, Miriam has several brothers and sisters still alive, as well as a proliferation of generations of nieces and nephews. She reared her own children and now has a slew of grandchildren and great-grandchildren. Most have spouses and assorted relatives by marriage. And as they have for over fifty years, they all turn up in various combinations at Miriam's apartment not only for every holiday, but also every weekend and from time to time at points in between. And Miriam loves it. When there are weddings, funerals, showers, graduations, birthdays and anniversaries, and other special events Miriam wants to attend if she possibly can, and with a family that large it seems that something special always is on the calendar.

Miriam does not make mistakes with her medications, or falter with her self-monitoring, or deviate from her strict cardiac, diabetic diet as she goes about her daily life. But when the family is around, despite all her careful planning, their good intentions, and my reminders and coaching, problems happen.

There was the night of a brother's special birthday, with the family gathering to celebrate. Another of Miriam's brothers was to pick her up, and knowing he becomes impatient any time he needs to wait Miriam carefully had made her way downstairs to wait for him on the bench on her front porch. It was rush hour, the weather was inclement, and one of the major league ball clubs was in town and playing not far from Miriam's home, all making her brother very late. He grumbled as they slowly made their way through traffic to the Golden Chef restaurant some ten miles away, only to discover that the event was at the Golden Chef banquet hall, not the restaurant, requiring yet another drive. By the time they arrived Miriam was very hungry and realized her blood sugar was dropping low, as she had eaten lightly at lunch in anticipation of the evening but still had taken her insulin, and now dinner was late. So when she finally was seated she reached for whatever was available: The bread basket, and an assortment of olives. "They're small," she thought of the latter.

Both bread and olives are loaded with salt, which causes fluid retention and overtaxes a heart in chronic failure, and the bread also provided a burst of carbohydrates that drove Miriam's blood sugar way up, and then crashing down.

When I arrived the next morning Miriam was in trouble, barely able to move, short of breath, full of retained fluid, and exhausted. But that I arrived the next morning was because I ignored the "protocol" and heeded the risk factor that I knew a family gathering represented. I took a blood sample to check Miriam's kidney function so we would know how much her "water pills" could be adjusted safely, together we figured out how to manipulate her insulin and food intake to re-establish control of her diabetes, and a hospital stay and downward spiral were avoided. Indeed, Miriam has been my patient for three years, and despite severe comorbidities she has been hospitalized only for an occasional, rare adjustment in medications that proved unsuccessful and an infection that could not have been predicted.

This is not because I am prescient or a clinical genius, but rather because I know that protocols manage diseases, not people, and that, outside such settings as an ICU, severity of illness does not necessarily correlate with need for services. Instead, while implementing the medical protocol that a patient's doctor has put in place, home healthcare for chronic disease management is best driven by a model where it is intensity of need rather than degree of sickness that drives services.

Intensity of need may be affected by medical instability, of course, but also by changes in habits (such as that much delayed birthday dinner), an error in a patient's self care, a change or absence of caregivers, a worsening of another condition that had been stable, or an adjustment of medications. With Miriam, I know that even when she is doing well enough that I can visit infrequently, that visit should be on Monday, because her family will have been there on Sunday, and if someone brought a birthday cake or ordered pizza or a grandchild proudly made the (salt-laden) dinner or any of a million other things, for all her careful planning and good intentions Miriam will be swept up in the moment and try to "be careful" and "have just a little" . . . and be in trouble.

There is no standard, evidence-based protocol or paradigm that says to visit Miriam, or someone like her, on Mondays, but I know to do it because I know Miriam. This wasn't hard to figure out, but for wider success with chronic disease management we need not to disregard evidence-based protocols but rather to incorporate and go beyond them, assessing, evaluating, and knowing our patients in ways that standardized tools and procedures never allow, whether we are nurses, doctors, therapists, or others.

With apologies to those who have been waiting, I note parenthetically that thanks to my fractured arm and consequent limited ability to use a computer for some time the "Intensity Clusters" model for managing chronic diseases has been delayed but will be coming and available online. But meanwhile, whether therapists are progressing with patients from basic safety, positioning, and relaxation measures to stretching, gait training, and restorative yoga, to progressive exercise and endurance, moving backwards on the cluster continuum when patients have problems and forward as they improve; or nurses move from managing patients' care to sharing that management with the patients and then to transitioning it to the patients with the nurses providing only occasional oversight and trouble-shooting, also moving back through the clusters when patients have problems and forward again as they progress, a patient-centered focus where the individual patient is the primary focus and the standard medical protocol is a tool rather than a goal is possible, clinically optimal, and highly cost-effective.

And a note to patients:

If something doesn't make sense, if you know something is likely to be hard for you, if there's a work schedule or personal commitment to be accommodated, if you've been told and tried and failed, if there's a habit that trips you up every time you try to change, if your body's clock doesn't run according to conventional hours, if you hate vegetables or can't swallow pills, or you're aware of anything else likely to impact your progress, or lack of same, tell us! Chances are good that if we're doing our jobs well we'll figure it out eventually, but you can save us all time and trouble and fast-forward your trip to better health if you partner with us actively and help us know you and know what your life is like. Instead of smiling, nodding, saying, "Yes, I understand. I'll do that/try/do my best" when you know perfectly well that for reasons unknown to us your best efforts are likely to be less than successful, say so. We can't do a good job of focusing on you and effectively building your regimen into your real life if we don't know who you are and, as they say, how you roll. Speak up; we don't bite (most of us, anyway). At almost eighty-five years old Miriam is astoundingly competent managing an extremely complex regimen of medications, equipment, self-monitoring, and diet; because she has an occasional downfall at a family gathering is a cue for me to tweak my practice with her, not a cue for me to beat her up for being less than perfect. I've yet to meet a perfect patient, or a perfect provider, but I've also yet to meet a flawed one who couldn't be and do better based on standing in his or her own truth.

Really, as people live longer and the health problems that confront and confound them increasingly are chronic conditions that need to be managed within the context of their circumstances, values, and abilities rather than strictly according to science and textbooks, isn't it clear what the focus of services, on both sides of the exam table, needs to be . . .

Paradigms, Protocols, or People?

Medicine is Not Healthcare . . .

Succinctly reinforcing the point of my last post (http://tellitgood.blogspot.com/2016/02/you-brung-me-dem-greens-so-dems-what-i.html), this appeared on my Facebook news feed today:

This is not doctor-bashing or medicine-bashing; when one is sick often medicine is needed and helpful. The contributions of medical science and those who practice it are legion.

But there's no preventive measure or antidote for illness like health and health promotion. Not only most effective, but also least expensive and most powerful in driving down sickcare costs, food is within almost everyone's control and access to better food and to understanding better ways to prepare it is far easier and cheaper than developing and marketing new drugs. (Of course it doesn't make money for big pharma, for-profit providers, or insurance companies, which can be troublesome for some and a disincentive for robust promotion.)

When people read stories from my work as a nurse and ask what can be done to better bad situations, making nutrition a priority, right where people live and where they already gather together, is a terrific place to start. And it doesn't cost much, and gets all involved outside and moving, which are health-promoting in themselves!

Another example of what healthcare providers, specifically, can do to help patients move towards better health is coming later this week; stay tuned!

"You Brung Me Dem Greens, So Dem's What I Et"

Trying to help an elderly, legally blind, illiterate patient manage his diabetes at home alone is a dicey undertaking. Unable to remember medications more than once a day; unable to read instructions, see reminders, or understand the numbers on his blood glucose meter; and dependent for food on whoever happened to shop or share on a given day or given week, "José" was for me a project. A Southern Black man with an unlikely Hispanic name who landed in Chicago during the Great Migration decades before, José had survived his younger years by fixing cars and picking up whatever unskilled jobs were to be had, and as an old man lived with a string of women passing through his bedroom but otherwise not in his life, a few fellows who turned up now and then to play cards and see what cons they could pull off, and once or twice yearly visits from a daughter who lived elsewhere but used her father's apartment as free accommodations when she came to town to visit her friends. José was estranged from his wife, and his son was in jail. And his blood glucose was elevated.

236, 274, 341, 299. I would arrive early to do the testing that José couldn't, and the results always were well above the "ideal" target range, which for a fellow of his age and his circumstances was approximately 90-120. Lowering the numbers by adjusting his medication was risky, because there was a constant possibility that no one would happen to bring food one day and José simply wouldn't eat. In that case his blood sugar could plummet dangerously low. Mentally competent, José was adamant that he would not move and didn't like the home-delivered meals that a well-meaning social worker once had ordered for him.

In those days one of my neighbors offered her garage as the drop-off point for Community Supported Agriculture shares, and always had unclaimed boxes of fresh organic produce left over from deliveries. She began bringing them to me, and I'd load their contents into an assortment of plastic bags and the next morning take them to poorly nourished, high-risk patients who didn't have the resources to procure such things themselves. One day I dropped off a bag for José.

My next nursing visit was the following day, when I pricked José's finger and waited for the meter to register the usual elevation. Instead it read "96."

"José!" I exclaimed, "That's perfect! What did you do differently yesterday; what did you eat?"

He looked at me tolerantly and replied, "You brung me dem greens, so dem's what I et."

With the once-daily medication regimen that his doctor finally had worked out and a single delivery of fresh produce instead of fast or convenience food, José's blood sugar level went from dangerously elevated to normal.

The problem was access to good foods. We had found ways to work around blindness, illiteracy, difficulty remembering medications, and all the rest, but with poor results . . . for want of food, proper food.

I wish José's problem were unique.

"Ronald" was a tall, skin-and-bones cardiac patient who had undergone heart surgery, and lived in a rough, "food desert" neighborhood on Chicago's west side. His wife once explained that going shopping entailed a long walk to an overpass where they could cross a busy expressway followed by a long walk back on the other side until they reached a grocery store. Then whatever they purchased had to be carried back to the overpass and back home, regardless of the weather, gang activity, or other circumstances. The only alternative was an overpriced "mom and pop" corner store that sold alcohol, lottery tickets, and abundant quantities of chips and pop, with a few staples and dairy products tucked in among the rest.

I told another of my neighbors about Ronald, and she immediately offered excess vegetables from her own garden. Ronald was a man of few words, but he thanked me when I delivered her gift, and the appreciation in his eyes was genuine. But the best part was my visit the next week, when Ronald told me how very much he had enjoyed those vegetables. In fact, although he had been spending his days resting in his bedroom, the day his wife was preparing the vegetables she turned around and found him sitting at the kitchen table.

"Whatchoo doin' there?" she had asked him, incredulous.

"I'm gonna say the blessing," he told her calmly, "because this is a blessing." He added for me, "And it is,it truly is."

That day Ronald enjoyed the most nutritious food he'd had since he left the hospital, if then, and also finally had been inspired to make his way out of his bedroom. When I discharged him from home healthcare a short time later he had progressed to the front porch, and was beginning to walk down the street.

All from an occasional bag of produce that was more than the family that grew it could use.

Ironically, among the boarded up buildings in Ronald's neighborhood there is an abundance of open space. And while José's neighborhood is more densely populated, residents determinedly try to grow what they can.

"Willie" was a long term patient of mine who immediately planted a garden where the city had torn down old, dilapidated buildings across the street from his home. Knowing that land was to be developed as the new district police station I gently suggested Willie's efforts might be for naught and better directed elsewhere, but he was determined . . . to the very moment the bulldozers upended his little plot. "Arlene" had nothing but a concrete stoop outside the door of her row house in the projects, but she carefully tended pots of tomatoes and greens. I drive through other neighborhoods where the sides of buildings meet the sidewalks, which in turn meet the streets, yet residents find patches of land to grow vegetables and herbs, or spots in the sun where pots can be placed and tended.

We know that nutrition is key to good health, and we know that our most malnourished and underserved populations have deep historical roots in caring for the land and growing food, yet vacant lots abound with broken bottles, old tires, and gang activity while we promote health with pharmaceuticals and things medical.

This is easy and relatively inexpensive to change, but it requires some effort and more than a little thought "outside the box," because our medical and social thinking is very much boxed in!

I have written about the importance of change being easy and natural for those affected. In this instance that means engaging people where they already go, tapping the authority they already respect, appealing to what they already value, and strengthening social networks that already are the fibers of their lives.

José and Ronald are African American and live in communities that are deeply religious and have strong ties to the church. Suppose early one Saturday morning the pastor of a church like theirs called leaders of his or her congregation to say that there was something special planned for the next day's services and some extra effort spiffing up the church was in order. I can see the faithful cleaning, touch-up painting, polishing, making their house of worship a reason for pride when their pastor's surprise was unveiled the next day. But suppose the next day just as the pastor stepped into the pulpit there came a great crashing noise and a band of hooting, hollering, unruly youth barged in pushing and pulling dumpsters from the alley, and overturned them, leaving piles of garbage in that freshly cleaned sanctuary. Imagine the pastor continuing his or her sermon: "Scripture tells us that our bodies are temples of God. While we are horrified that someone would dump garbage in our sacred space here, how is it that we put garbage in our equally sacred bodies every day, polluting and poisoning our very own holy temples? You come here wearing your best clothes, with your hair and make-up just so and your shoes freshly shined, just as you cleaned and polished the church yesterday, but is what is inside of you as vile and foul as this rotten, smelly garbage now before us in this sanctuary?"

And suppose that church became a hub for promoting good nutrition, in the name of stewardship of body temples. There would be classes about nutrition and meal planning, gardening groups, and a farmer's market, all springing from such existing activities as the Mothers' Room, the deacons' council, the Sunday School, and more. Fried chicken, macaroni and cheese, ham, and caramel cakes at church suppers would be supplemented, if not replaced, by nutritious, home-grown alternatives, prepared and served by member cooks and kitchen volunteers.

In José's and Ronald's neighborhoods, people "hang out" together, on front porches, street corners, or the "ramps" of public housing. Suppose those groups were mobilized to turn vacant lots, parkways, and back yard plots into gardens. The much-valued camaraderie still would be there, but instead of time being frittered away with idle chatter, games, and crime, gardens would rise, with friends and neighbors there to help, encourage, and celebrate one another. Even gang members who today guard their "turf" might be enlisted to tend and protect it in another way. The harvest not only would feed those who grew it, but would go to the church for those healthier church suppers and for the farmer's market.

Suppose the youth in the church learned to be "personal shoppers" and went in the church van every couple weeks to shop for people like Ronald, who can't hike to the overpass and carry purchases home on foot. Suppose neighborhood schools were enlisted, where students could receive community service credits for assisting with the gardens, classes, and shopping. Suppose assignments in science, English, reading, and other classes incorporated this theme. Suppose students designed a web page for the program, and solicited donations of plants, seeds, and tools. Imagine containers at the checkout counters of home improvement stores and gardening centers inviting patrons to donate not canned goods for a food pantry (so people can eat for a day) but compost and mulch and gardening supplies (so people can feed themselves for a lifetime).

Recently I began the study of Taoist T'ai Chi, after hesitating on learning that all of the instructors are volunteers. "Who has the kind of time to put forth such effort on a volunteer basis?" I wondered. "Will I just be wasting my time?" The answer, I've discovered, in a word is "retirees." Classes are taught by energetic, engaged, enthusiastic highly capable world-traveling former executives and all manner of folks who have come together around their love of this practice and who are eager to share it. Imagine the retirees who love to garden, and would be glad to share their expertise and labor, clergy who no longer serve churches but would enjoy creating sermon notes on the topic for busy pastors, and people who simply have a passion for cooking and eating well and would be happy to share it.

The resources to make programs such as this happen are there. The cost is not great. The need is for leadership from within the community, and resources to assist those leaders in growing and developing their programs.

Where we often err is in assuming that solutions for problems in health and healthcare lie with the "experts," that is, with doctors, nurses, and others who practice professions, as well as scientists, professors, politicians and policy makers, and those ubiquitous "consultants" who look sharp, speak well, charge hefty fees, and ultimately produce little of substance and value.

Many of the answers and resources needed to move forward are latent among the very populations who present with the "problems." This is not about blaming the victim; rather it is about empowering those who are best suited for and most highly invested in making positive change happen in their own lives and in their communities. Identifying and mobilizing appropriate communities is critical, and these must be those that already exist: Church groups, neighbors who socialize, school activities, etc. Surely somewhere in the past every one of us has endured mandatory "group projects" in school where membership was assigned by the teacher or professor and results were mediocre at best, after everyone had endured a painful process of questionable educational value. Indeed, many of the health problems we see are born largely of bad habits: Sedentary lifestyles, poor food choices, and general poor self care. But the energy of true community overcomes the inertia of habit, and it is this that needs to be tapped.

It is important, too, that the various components of community programs be integrated so they are supported and reinforced on multiple fronts. Many will say, "We have community gardens" or "There was a health program at our church last year." While those are valuable and good, small, isolated efforts do not have the same impact as comprehensive, "home grown" programs powered from the "inside" (not imposed by outsiders), where the message is repeated in different forums and in different ways, all complementary and collectively engendering and sustaining a greater energy than a single lecture series or garden club can deliver.

Where to start? Perhaps by driving through a neighborhood like Ronald's, or José's, or yours, knocking on a church or community center door, chatting up the neighbors on the porches and street corners, and starting new community gardens by planting seeds of possibility. Then it very well could be that one day more infirm elders and others would begin to break out in health, just as José did the day his blood sugar dropped to 96, and when outsiders looking on asked in wonder how this could be people could say of that community, in more ways than anyone realized,

"You Brung Me Dem Greens, So Dem's What I Et."

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.

Easy and Natural

Easy and natural. It took many years and a patient like "Beatrice" to drive home to my conscious awareness how very important those two words are.

There's just no nice way to say it: Beatrice was a mess. In her early fifties, morbidly obese, living with multiple chronic and serious health problems, and in and out of the hospital as often as some people are in and out of the grocery store, Beatrice was a challenge from the moment I first walked in her door. Her home was a sizable apartment in a new development not far from the site of Chicago's old Cabrini-Green, and I supposed Beatrice and her family had been "resettled" there when their building in "the projects" was scheduled for demolition. Despite being new, the apartment held decades of clutter; whatever piles and sprawls had been in the old Cabrini home probably had been shoveled more or less intact into moving boxes, transported to the new location, and dumped out again just as they had been before. The insect population would have traveled along, too, explaining the "creepy crawlies" in evidence from time to time, but I never did figure out how seemingly years of filth had managed to accumulate in a residence that was so newly constructed.

Most recently hospitalized for heart failure, Beverly was bloated with retained fluid in addition to her baseline body fat, and she barely could move. Yet she described herself as the caregiver for her sister, who sat on the small sofa adjacent to Beatrice's chair, smiling brightly but staring vacantly or offering odd comments that seemed to come from nowhere and pertain to nothing. With their respective disabilities there was little the two of them could do except sit side by side staring at the television, and that's pretty much how they spent their days.

Beatrice's daughter also lived with them but was employed and rarely home when I was there. Beatrice's twenty-something year-old granddaughter and five or six year-old great-grandson completed the household, at least as far as I could tell. More than once I caught myself doing the math: If Beatrice was in her early fifties but had a five or six year-old great-grandson clearly there was a multigenerational pattern of very young motherhood in this family. Beatrice had little formal schooling, her granddaughter was struggling to earn her GED, and employed doing unskilled labor, her daughter probably also had little education.

But there they were, often only Beatrice and her sister when I visited, perhaps with the child running about. The granddaughter popped in and out, agreeing to pick up medication for Beatrice and help her go to the doctor, sometimes following through and sometimes not. Indeed, there were times the granddaughter was asleep in a back bedroom and could be only minimally roused, a circumstance that, particularly in a setting like that, triggered my suspicions of illicit substance usage.

A bare mattress on a bed frame sat in one corner of the living room; I never learned if it actually served as someone's bed or if it just was another piece of household detritus that somehow had settled in that location. Occasionally there was a single rumpled blanket, but usually it was just a blank expanse in the room, for which I was grateful as it was the only place to sit or set anything down. Assorted pill bottles were sprinkled about the home in no apparent order and seemingly without consideration of for whom they had been prescribed. Eating happened when someone was hungry and found food among the piles of dirty dishes in the small kitchen or when the granddaughter came home with a bag from a local fast food establishment.

Beatrice was friendly and seemed content to have me around, yet I always had the sense that if I never went back she might briefly wonder what happened but would think little more of it, because in Beatrice's life things just happened to her; she was a passive recipient of fate, not an active agent of her own being. We agreed that Beatrice did not want to have to go back to the hospital and that it would be good to focus on things that could make that less likely. Beatrice made affirmative noises when I explained ways she could act to facilitate this goal, when she realized I was addressing her, that is, as she often looked over me and towards the cartoons on TV. I gathered up all the medication bottles I could find, sorted them according to owner, pulled out the ones currently ordered for Beatrice, and set those pills up in seven-day organizers to make management easier. Beatrice agreed that this helped, but the contents of the boxes week after week suggested that her medication usage continued to be sporadic at best.

One day when the granddaughter once again brought high-fat, high-sodium, nutrient-poor offerings from the local fast-food chicken place, and as I sat looking at pill boxes that should have been empty for the week but instead were more than half full, I stopped. Just stopped. Teaching and explaining and setting up systems and reminders clearly weren't working, and I wondered exactly what to do differently. And then I caught myself starting to say, "When you have breakfast . . . " because we healthcare providers tend to associate many actions, desired and undesired, with meals, as in, "Take your medicine with breakfast," or "Don't have any more/less than one full cup of liquid with each meal."

But it hit me suddenly that Beatrice didn't have breakfast, or any meals. She ate when she was hungry or when someone happened to cook or bring food home. Likewise, Beatrice didn't use clocks, and I don't remember seeing a clock in the home. She went to bed when it was dark and she was tired and/or there was nothing else to do, and she rose when it was light and/or she was awake and feeling more or less rested, hungry, or in need of a bathroom. Is it any surprise she didn't remember her medications, or that, as a passive recipient of life events she perceived as beyond her control, she failed to heed or act upon instructions? To her mind my role was to "check on" her and take action if something was amiss; that she also might have a role in her health and healthcare probably was a most alien, if not incomprehensible, notion.

There in the midst of one of the most extreme clinical situations I've seen, the futility of "teaching" Beatrice to eat regular meals, properly spaced and nutritionally appropriate, and to use those time points along with another called "bedtime," as in a regular, more or less consistent time of retiring for the night, to schedule her medications and other self-care practices, struck me forcefully, and I sat mute, considering. And, if Beatrice had little or no experience of a correlation between her actions and the events in her life; if what she knew was powerlessness sprinkled with seemingly random moments of pleasure and pain, the likelihood that she would modify her habits in the direction of better health and sustain that change was small. Can it be done? Probably, at least to some extent. Can a nurse with limited visits and the constraints of public aid financing make it happen? Unlikely.

Sitting on that bare mattress in the corner, gazing absently towards the dirty kitchen as Beatrice and her sister gazed equally absently at the television, I realized that to help any patient make any change for better health it is incumbent on providers to make that change as easy and natural for the patient as possible. If what we're asking is too difficult, too confusing, too overwhelming, too time-consuming, too disruptive to the rest of a patient's life, or just too bizarre, too different from anything a patient usually does or ever has done before, we're likely to meet with frustration and failure . . . and more hospital stays, more healthcare expenses, more complications, more discouraged or resigned patients, more waste, and more disappointment.

Yet all too often "easy and natural" don't figure into our approaches at all. Instead, we offer up standardized protocols and evidence-based recommendations straight from the most current conferences and journals, and we hand out the same tools and prescribe the same systems to everyone. Make no mistake: The protocols and recommendations and tools and systems are good, often very good, but if they're not adapted to fit into the specific lives of individual patients we're setting everyone up for disappointment and problems.

Some years ago I worked for the home health division of a major medical center affiliated with a rehabilitation hospital, and the rehab patients often came to us. The nurses at the rehab hospital made magnificent medication charts for patients who were going home, with everything clearly set out, easy to read, and color coded; truly, those charts were exquisite. Except that each medication dosage was assigned to a specific clock time: Take this pill at 7 AM, these others at 8 AM, another at noon, one at 5:30 PM, and the remaining ones at 9 PM. I can't tell you how many patients I found over the years trying to turn their lives inside out in order to take medications at those specific times, because that's what the chart said to do, and it said so in such a pretty and powerful way that surely it must be right.

"Sonya" was an early-riser and had been all her life. Long accustomed to rising early to do household chores before sending her son off to school and then leaving for her own office job, as a retiree years later Sonya still rose between 3:00 - 4:00 AM, went about her day, watched the 5 PM news while having dinner, read or watched more TV after that, and was in bed by 7:30 at the latest. After Sonya had a mild stroke and returned home from the rehabilitation hospital she dutifully waited until 7 AM to take any of her medications, even though she had been up and about for hours by then and breakfast was long gone, and she set her alarm clock to awaken herself at 9 PM so she could take her final doses for the day. Sonya was miserable and exhausted, but this is what the chart said to do, so that is what she did.

It took some doing to convince Sonya that the clock times on the chart were arbitrary, and that the important thing was that one medicine be taken an hour before the others and that some things be taken with food and prior to retiring at night, none of which had been happening, as the times on the fancy chart did not coincide with Sonya's actual daily routine.

We fixed it, and over the years I "fixed" many of the fancy charts from the rehab hospital, sometimes shaking my head at the thought that someone went to the trouble to create those elaborate tools without troubling to learn anything about what patients' days actually were like. Sonya, a long time executive secretary who kept high-powered executives on track, followed instructions to the letter. But she was the exception. Most threw the chart away or ignored it, and did the best they could with nothing to guide them unless a visiting nurse or other provider intervened.

If we hand out generic medication charts, no matter how pretty, or dispense long, confusing lists of instructions, we can expect "noncompliance." And the fault lies with us, not with our patients.

As for Beatrice, eventually I managed to transfer her prescriptions to a pharmacy on the corner where her granddaughter waited for the bus to go to school. The granddaughter then began picking up refills on her way home, and filling the pill boxes as soon as she arrived. Having assumed that much responsibility she became more aware of Beatrice's missed doses and stepped up her oversight and reminders. The system faltered when the granddaughter wasn't in school or went away for a weekend, but it was progress. I suggested simple changes in the foods the family brought into the home for Beatrice, such as making the most healthful possible choices from fast food menus and no longer leaving the salt shaker sitting in plain view. The likelihood of long-term significant change is small, but we saw some baby steps in a positive direction before I left, and Beatrice stayed out of the hospital for months. A perfect solution? Not even close. But a few little things that were easy and natural enough for that family that there was some likelihood of their being carried out. Baby steps.

Clearly Beatrice did little to take responsibility for herself and her life, whereas Sonya's efforts were extraordinary. In fact, Sonya eventually was diagnosed with Stage Four cancer and survived and thrived for years longer than anyone would have expected, due, I'm sure, to her strong spirit and meticulous self care. But what about you?

The problem with "easy and natural" is that most of the time no one knows quite what all it is in any given life. What are your left foot and the fourth finger of your right hand doing right this minute? Unless they're hurting, or are too cold or too hot, you probably didn't know until you read that question. Whatever they're doing, it most likely is what feet and fingers easily and naturally do, without any conscious direction or awareness whatsoever. Our bodies autocorrect more than our iPhones, and we mindlessly shift positions as we're talking, sitting, working, and even sleeping. Many other habits are almost as automatic, and we may not become aware of them until they're somehow disrupted. That means you may not know to tell your healthcare providers what they can do to help you be successful in effecting the changes they're recommending. While it's incumbent on us to look and ask, it's incumbent on you to think about this and anticipate and communicate likely problems and needs.

One important way to do this is to speak up when you perceive a difficulty, whether at the time you receive a prescription or instruction or later when you try to do what you've been told. If your Physical Therapist tells you to do exercises at home but you know your apartment doesn't have the needed space, say so right away so the exercise program can be modified, instead of trying to make do, benefiting less, and perhaps injuring yourself. If your doctor directs you to soak an injured body part in a warm bath but you have only a walk-in shower, speak up! There are other ways to apply heat. If you are asked to follow a schedule that conflicts with your work or other responsibilities explain what modifications would be make it easier. If you're given so many things to do throughout the day that your time is chopped up in small blocks punctuated by seemingly endless things medical, ask a nurse to help you simplify this regimen. If the way your nurse shows you to do a procedure feels awkward and difficult, give this feedback. It may be a matter simply of needing more practice, but there are many ways to do most things, and your nurse may be able to offer an alternative that doesn't leave you dropping things or making mistakes. And if it all makes perfect sense in the office, clinic, or hospital room but looks like gobbledly-gook at your kitchen table, pick up the phone.

This activity called healthcare, and the work of getting better and being and doing the best that we can, are sometimes complicated, but in any given scenario may not need to be so much so. Sometimes even one simple change is surprisingly difficult to make, but only because it just doesn't fit into the life a person lives. If we stop to consider for just a moment, it's clear that the best outcomes follow the best choices, and to make those we need to work together to be sure that, on all sides and to the greatest possible extent, we're doing the best things in ways that are most

Easy and Natural.