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.