Generosity

Generosity may be the one parameter significant to health that providers never think to assess. I surely didn't, until I met "Carl" and "Catherine," and thought off and on for years about what their dilemma taught me.

Carl had been a highly successful and prominent attorney, representing as his personal counsel, among others, a well known politician whose name if I disclosed it would be recognized around the world. Widowed and retired, Carl had moved into an upscale retirement community where he enjoyed an expansive apartment on a high floor with magnificent views of the city and park. His neighbor and lady friend Catherine was similarly situated, in a beautiful apartment of her own in the same building. Both were wealthy and wise, and delightful. Carl was my patient, and enough years have gone by now that I don't remember the details of his medical case, but I vaguely remember cardiovascular disease and dressing ulcers on his legs, an endeavor that can take some time and thereby allow ample opportunity to chat beyond the necessities of healthcare. From time to time Catherine would appear during our visits, impeccably dressed with hair coifed just so and understated jewelry carefully in place. Carl grumbled some because the bulky dressings on his legs hampered his otherwise equally debonair appearance, and the two indeed were a handsome couple who clearly adored one another.

At one point Carl and Catherine considered marrying, and while the love and compatibility they shared were beyond question this was a difficult decision because they needed to consider the potential impact on their respective financial positions as well as the concerns of their adult offspring, who struck me not as self-serving or worried about their own inheritance but rather as realizing that legally joining the lives of two well-to-do elders was a more complex process than planning a wedding and life together for two young adults just starting out in life. Ultimately Carl told me that he and Catherine had reached an understanding and agreed to continue just as they were, loving and devoted to one another, but avoiding the tax burdens and legal complications of a new marriage at that stage in their lives.

Now and then something would remind Carl of his late wife, "Lois," prompting him to tell stories of their many years together making a home and rearing a family. This perhaps was my first lesson learned about the possibility of having more than one great love in a lifetime, as Carl could become a bit tearful speaking of Lois and remark about how he missed her, even as he clearly was deeply happy with his beloved Catherine. He was a special gentleman, emblematic of a bygone era. Never was that clearer than when his 95th birthday approached.

With Carl's approval, Catherine planned a party at the private club where they often enjoyed dinner. Close to 95 years old herself, she planned the menu, the guest list, the setting, and every last detail. I had been to that club just once, as the guest of another member who I was dating at the time, and can attest to its elegance and to the air of "upper crust" festivity that surely characterized Carl's birthday party. But then came trouble in paradise.

Carl would not, could not, under no circumstances and in no way, accept Catherine's paying for that party. And she was devastated, cornering me in a hallway one day to explain that at almost 95 herself she could not go shopping any more, she wanted to do something special for Carl's birthday, this was her gift to him, and he wasn't willing to accept it. One doesn't turn 95 every day, and at that age I suppose one can't help but realize that there might not be future birthdays, so there was no compromising "this year" with intent to do something differently "next time." The party was on, and fabulous it would be, but who would pay the bill was a point of bitter contention.

Carl was as distressed as Catherine. He understood and so appreciated what she was doing, he told me, but there was no way he was going to sit at a dinner table and allow a woman to pick up the check! No way, not happening, not in his lifetime; that simply wasn't who he was. Now, all of this unfolded in about 1995, and with Carl turning 95 years old then a little quick arithmetic shows that he was born in approximately 1900. I can cut a gentleman of that era some slack with respect to the understanding of gender roles, particularly since his respect for Catherine was so very obvious in every way. It was a "money thing"; she could have all the money in the world and do with it what she wished, but when they were together he would pay, because that's what gentlemen do, he said, what he always had done, indeed, this deep-seated value was core to who he was.

So Catherine saw Carl as rejecting her gift, the only one she possibly could offer him, while Carl saw the party Catherine had planned so carefully as his gift, and that he would be the one to pull out a credit card at the end of the evening or ask that the bill be posted to his personal account was immaterial to anything except his ego. Why couldn't she just give him the party and let him pay?, he wondered. Why couldn't he understand that if he bought his own present then she wasn't giving him anything at all?, she wanted to know.

I believe he ultimately prevailed and her disappointment eased somewhat, while she swallowed the rest and with perhaps the greatest generosity of all allowed him to enjoy his party on his terms. I vaguely remember her telling me that it had been a lovely evening, and adding a bit wistfully that she wished he had allowed her to give it to him.

This wasn't an easy dilemma by any means, but it was a wonderful one to watch and from which to learn: Here were two people urgently trying to give their best to one another, while the two versions of "best" clashed irreconcilably.

Today from time to time I hear discussions and debates about how the expenses of dating should be managed, and Carl and Catherine come to mind each time. To my mind there is nothing romantic, nothing caring, nothing generous about "splitting the check," taking turns, or carefully sharing expenses. I do realize that with student debt and living expenses being what they are now for young people there is a practical need to be counterbalanced with romance, and I hope that if it is financially necessary to split the check or else limit dates to the taco cart on a street corner, couples are finding 21st century ways to be generous with one another. It's said that any time someone says, "It's not about the money," in fact "it" is about the money. But not in this case, I don't think. Carl and Catherine each had, as it's said, "more money than God," and none of their friction points were about economic hardship or fairness. Carl's commitment to providing for his lady had little to do with Catherine; rather it was who he was, he was the provider. And Catherine's planning that elegant party, down to the last detail, in no way suggested that Carl couldn't have called the club and arranged his own bash, or that any number of his friends or family members wouldn't have done so. No, the gift of that party was who Catherine was. Carl could have had twenty other celebrations, but this one was from her, and that's what made it special.

With such phenomena as speed dating, "hooking up," and virtual relationships as well as women emerging as financially independent professionals and having reliable birth control, the world has changed radically since Carl's and Catherine's formative years, and since mine. Clearly the old dependency was not a good thing, and equally clearly, sharing has value. But I hope the "I'll take care of my part and you take care of yours" mentality, the dinner parties that always are potlucks and never are hosted by someone who cares enough to plan and serve a meal, the constant inner weighing and measuring to assure that one isn't somehow being exploited; I hope in 2016 these aren't taking the place of generosity, of giving because one so desires and because it's who one is rather than because of a sense that the other somehow is needy, or of receiving, that is, allowing another to be generous and accepting it gratefully and gracefully, because the world is so much warmer when hearts are open and calculations set aside.

My best friend as a child was "Barbara," and one of our favorite pastimes was pretending we were chipmunks (why chipmunks I never will know, nor do I know if I ever had so much as seen a chipmunk at that age, but chipmunks we were) and preparing "meals" for one another from the various leaves and berries growing in my parents' backyard. We crafted our masterpieces side by side on the sill of a bedroom window, and proudly presented our creations to one another. Now, we both had the same quite limited array of plant life from which to choose in that suburban space and probably designed virtually identical offerings as we labored at that window sill. But that wasn't the point. Some fifty-five years later I still remember the excitement of making "dinner" for Barbara and looking forward to her reaction, and to receiving and delighting in what she made for me. I hope children today, whether they're seven or eight, as Barbara and I probably were, or fifty or sixty, or ninety-five, like Catherine and Carl, I hope they haven't lost that.

In fact, as I work with people I'm struck over and over that those who are healthiest also have the most finely honed habits of generosity, and those with the most troubles tend to have impairments in this respect.

There are pathological givers and takers, there are those for whom the "What's in it for me?" question always looms, there are manipulators who give to get and others who cultivate neediness in order to draw attention. There are some who serve only themselves, a subset of which includes angry, angry people convinced that life has given them a raw deal from the time they were born and they're not about to waste a thing on anyone else. There are relationships that crack under the strain of one person's illness or disability, and others that shift and thrive. There are open hearts, closed ones, and broken ones. Indeed, the variations on the theme of generosity seem endless, and endless in their impact and significance.

So when we're assessing heart, lung, and gut sounds; when we ask about intake, elimination, and pain; when we poke, prod, and scan; I wonder if we also should be mindful of the ways in a person's life that she or he simply is, or is not, generous with others and receptive to others' generosity in turn. And when patients are before us assessing us fully as much as we do them, determining if we know what we're doing and if we're a good fit for them, I wonder if it might be most telling for them to consider whether we're giving our time and talent generously or with one eye on the clock and the other on our bank accounts, pressured and pressed down by a system that should offer the most humane of services but instead often is cold and cruel. Indeed, as I type on this computer there's another screen behind it on which I can access a myriad of details about thousands of people's lives, yet sometimes I think I could shut down that bugger entirely, look away from it and towards my patient, truly seeing him or her, and know the most important thing I need to know simply by assessing

Generosity.

Duty to Supply

In the USA we're in the throes of primary elections, with New Yorkers going to the polls yesterday, some contests behind us, and more ahead. As campaigns heat up there seems to be increasing mention of healthcare as a fundamental right, and arguments about how best to assure this and/or how the other side has failed in its endeavors. But there's a disturbing lack in all the chatter and sound bites: Any time there's an assertion that people have a right to receive something, such as healthcare, there's a corresponding truth that someone else thus has a duty to supply it. And talk of that duty to supply is stunningly absent.

This is profoundly troubling, because healthcare is a finite resource, and with precious little attention to who is to provide "universal healthcare," and how, I fear we're on a road rife with risk for creating insurance that essentially is worthless at best, and phenomenally costly at its long term worst.

A few years ago a physician who I've known and respected for twenty-five years expressed concern about the urgent need for more primary care doctors and the difficulty attracting talented young doctors to the field because the hours are long, the work arduous, and compensation poor. Physicians completing their residencies essentially "graduate with a mortgage, but no house," he said, alluding to the staggering debt most need to assume for medical education, and even those who are drawn to primary care practice often need to choose an alternate specialty instead in order to be able to pay their debts and manage their current expenses and responsibilities.

Just a few months ago another physician, who now is mid-career, remarked that Medicare HMOs or "Medicare Advantage" plans are decimating his practice, luring patients away with promises of lower premiums and broader coverage but then severely curtailing services they actually will provide and drowning contracted physicians in paperwork, bureaucratic red tape, and unreasonable and unsafe productivity expectations. As a result, this doctor is opening a "cash only" concierge practice while on the side continuing to see such "traditional Medicare" patients as are available. This means that anyone who has neither traditional Medicare nor the resources to pay out of pocket for services will need to find another doctor. As more physicians turn to this option, fewer are available to treat everyone else.

Still a third physician colleague told me during a lull between appointments that he was scurrying to complete training to do varicose vein treatment in his office, not because he has a particular interest in varicose veins or vascular health, but because this pays well and will offset some of the losses of his regular primary care practice. I don't know about you, but I'd be a little uneasy about being treated by a doctor who had little interest in and no true passion for my problem and was seeing me only because my insurance would pay him well for doing so!

I remember when as Vice President for Patient Care Services I couldn't beg, borrow, or steal a Physical Therapist for my hospital. And very recently a patient lavishly praised the Physical and Occupational Therapists working with her now, and remarked that in the future she always would choose and recommend the company that had provided them so as to have their services again. I delicately pointed out that both therapists were independent contractors and not employed by that company, so if she wanted to be able to call upon them in the future she would be best advised to talk with them about how to do this. The problem was that the company providing her therapy services was unable to recruit and retain therapists as employees and so had to resort to engaging independent contractors. In all my years in home healthcare Speech/Language Pathologists have been hard to come by. Need for their services isn't great enough to maintain a full-time position covering a reasonable service area, so therapists end up cobbling together multiple part-time jobs, but soon tire of this and move on.

The "nursing shortage" has made headlines for some thirty years, but this is a widely misunderstood misnomer. In fact, there are plenty of nurses "out there"; the problem is that they leave nursing, or at least clinical practice, in droves. So as fast as universities crank out new nursing graduates, experienced and accomplished clinicians are heading out the doors of hospitals and other healthcare settings and transitioning to different kinds of work. This year there's been some mention in the media of research that concluded that nursing is the most rigorous of all undergraduate majors. Whether or not that's true, it is inarguable that nurses are highly educated in the biological, physical, and social sciences; they are astute observers, leaders, team builders, and problem solvers; and they have an amazing knack for making something out of nothing, dealing with "difficult" people, and working for hours on end without food or bathroom breaks. With all this going for them, and after a few too many double shifts, night calls, missed holidays and family milestones, and dangerous near-misses in short-staffed settings it's no wonder that nurses leave, and that other opportunities readily unfold before them.

And the problem isn't limited to providers.

"Tara" is a current patient of mine. A sweet, somewhat too loud, simple woman with a history of schizophrenia and now just a step away from homelessness, Tara somehow managed not to notice the huge lump growing on her breast. When it opened and began to drain she bought a box of band-aids for it, but they didn't seem to hold (!) so she finally went to the Emergency Room. Of course her diagnosis is advanced breast cancer, with an infected open wound. She was admitted to the hospital briefly so the infection could be treated and the extent of her disease determined, and then sent home. I see her for wound care.

Tara lives in a single room in a tired old building that once was a hotel. She has a microwave but no kitchen, a bed, and a bathroom. She also has a Medicaid managed care health plan, whose inefficiencies resulted in it taking over a week to obtain supplies for dressing her wound, which now measures eleven centimeters in diameter and one centimeter deep and drains copiously. This left her with bloody, infected exudate oozing from the open wound and running down her chest. Before she can see an oncologist and undergo treatment for her cancer she must secure a referral from her primary care physician, a doctor assigned by her insurance plan. This doctor is miles away, and Tara has no car. Indeed, she has no carfare; she is so poor that if she were to lose her run down single room her next "home" would be the city streets. But until that specific physician sees her and writes a referral for the oncologist, she will go untreated. Whether or not this is a deliberate business strategy, the managed care plan is saving a boatload of money, because Tara is not incurring any expenses while her cancer spreads, and every day she doesn't have wound care supplies is another day the plan doesn't have to pay for them. Tara's cancer almost certainly will kill her; the lack of medical care and supplies will expedite the process.

"Ricky" has a similar story. A middle-aged man with "cardiodiabesity," Ricky had a significant stroke last summer, spent a month in the hospital, seven more months in a nursing home, and eventually was discharged home paralyzed on one side and confined to a wheelchair. With only one working arm it's mighty hard to propel and steer a wheelchair, and Ricky crashes into walls and furniture just trying to make his way around his little apartment. He needs medication for high blood pressure, diabetes, neuropathy, heart disease, and more, but when the supply of "leftover" pills from the nursing home ran out Ricky had no way to secure refills. Disabled, Ricky has one of those "Medicare Advantage" plans that, like Tara's, requires him to obtain from his plan-assigned primary care provider all referrals, prescriptions, and requisitions for anything he needs, and he, too, was assigned a doctor on the other side of the city. I attempted to secure the services of a home-visiting physician since Ricky barely can maneuver around his apartment much less make his was across town, but the Medicare Advantage plan requires a referral from the its designated primary care doctor before even that can be approved. The primary care doctor bluntly refused to provide this, saying writing a referral for this plan entails a good measure of uncompensated work for him, and that he was "not willing to do paperwork so another doctor can make money." At that point I learned that the plan also was denying my services, and those of the therapists who work with me, so I counseled Ricky to go to the Emergency Department, where he could not be turned away, and called his sister to discuss helping Ricky initiate the process of extricating himself from that insurance plan.

I have friends who are laid off, between jobs, and/or running small not-for-profits and were thrilled finally to have insurance through the Affordable Care Act, aka "Obamacare." I haven't had the heart to tell some of them that although they now have insurance it is virtually worthless, that they will find needed services aren't covered, that the paperwork and processes to secure services that are covered often won't be worth it, or that providers will be less than glad to see them because the insurance plans pay so poorly that providers lose money as soon as patients walk through the door. Many others with employer-supported coverage discover that their out of pocket deductibles and copayments are so great that they cannot afford to seek care.

So I'm worried about the rhetoric in this election year. While cries of "Universal Healthcare!" and "Medicare for Everyone!" sound great and may draw in voters, there are no corresponding cries proclaiming who will provide this care while nurses leave the profession in droves, physicians choose specialties to maximize financial gain, therapists are independent contractors who pick and choose whom they will serve, patients cannot obtain the supplies necessary to manage their conditions, and insurance companies obstruct and deny coverage. Indeed, there is great clamor for the right to receive, but graveyard-like silence about the duty to supply.

We can, however, each of us, take action. We can raise awareness by asking the tough questions: If everyone in town suddenly has insurance, who will provide their care? How will they obtain their supplies? How efficient/inefficient will processes be, and who will profit?

There is legislation going forward in Washington now that would mandate safe nurse staffing levels in hospitals. Passing this would be one step towards slowing the flow of nurses going out the door and towards better quality care. Trust me: Nurses who have worked twelve, fourteen, sixteen hours straight, or more; who have doubled back to an "off" shift with only a few hours rest; and who are demoralized, angry, and afraid aren't your most effective advocates or overseers. Neither are home healthcare nurses who have worked all day and then been required to go out again at night, and then to begin a new, full workday the next morning. Indeed, I once realized I needed to quit a job ASAP when my hand fell off the steering wheel, landed in my lap, and woke me up . . . while I was driving on the expressway at night after one of those "on call" visits. The conditions in which nurse work today are dangerous for everyone, and this needs to be addressed.

We also can advocate for valid measures of quality rather than the equivalent of "Yelp" ratings such as exist now. Even while yet a teenager working as a nurses' aide (there were no Certified Nursing Assistants in those days) I noticed that the worst physicians had the most loyal patients. The doctors whose clinical outcomes consistently were inferior to their colleagues', the ones the nurses avoided and counseled others to avoid, the ones who always seemed to be in some sort of trouble, those were the doctors who dressed beautifully, spoke warmly to their patients, and, had there been such things at the time, would have had very high "patient satisfaction" scores. The bottom line is that although they don't wish to be rude, healthcare providers work not to make people happy but to help them to be healthier, and a pleasant personality does not necessarily equate with skill, knowledge, or judgment.

In home healthcare "quality" is measured by such variables as whether or not a patient's ability to bathe or take medication improves . . . without regard to whether the patient had deficits in these areas in the first place or, when present, if home healthcare could or should focus on changing them. Ricky, the paralyzed patient mentioned above, never will be able to bathe himself, but he is able to receive high quality care and there are ways to determine that this happens even though the bathing variable remains constant. If we're to measure something, let's measure those, and put our resources there. And let's not forget reliability and validity. Healthcare organizations are coaching providers to recite scripts when they talk with patients, as a way to manipulate patients to rate the organizations highly. For example, employees often are counseled to say over and over that they are providing "excellent" service, to the point that sick, weak, tired, compromised patients hear "excellent" so much that when they later see the word on a followup questionnaire that's the option they select. That's not good care; that's chicanery.

Healthcare is a lot like marriage: When it's good there's no need to boast about it. So let's save time and money; both are needed elsewhere.

And finally we must realize that if we wish to ensure healthcare as a universal right, then there will be a cost. Only when we acknowledge this can the discussion begin about what we are willing to spend for which services provided by whom, how, and in what circumstances. Excessive profiteering, shortsightedness that results in immediate savings but future expensive complications, inefficient systems, electronic medical records that confound rather than facilitate provision of services, and plain greed are problems, but if we talk only of what everyone has a right to receive then it's open season for those seeking to capitalize on opportunities to supply without scrutiny or conscience. And when nurses walk away from their profession, physicians choose practice areas on the basis only of bottom-line considerations, and therapists are willing to work only for themselves we need to ask, seriously, why.

Tara's insurance plan will cut me off soon, I'm sure. I've seen her four times, and haven't been able to teach her a thing about managing her wound because I've had to make do with whatever supplies I can scrounge up instead of showing her the correct way to take care of herself. I can't evaluate her response to cancer treatment and help her manage side effects because she hasn't had any treatment, because she can't get to the doctor her plan says she must see, and no one else can see her without that doctor's referral. When we speak of healthcare as a fundamental human right, is this the kind of care we mean? Disabled, almost homeless, and very ill, Tara theoretically has healthcare, but she, and many others, will die of untreated disease and infection because while her right to receive care has been addressed, there has been precious little attention to the flip side, for her and for all of us. That is, how are we to ensure that in practical, efficient, and truly cost-effective ways the right to receive healthcare is balanced with humane and conscientious attention to the corresponding

Duty to Supply

Doing Well By Doing Good

Like many home healthcare providers, throughout most of my tenure as a visiting nurse my compensation was fee-for-service. This meant that as business went up and down, so did my paychecks, and with the rocking and rolling that has characterized the industry, "down" often was more common than "up." As a result, most clinicians have had "side jobs," often with other home healthcare providers that needed flexible, part-time help. That way if their primary employers hit a rough patch or there was a downturn for any reason, they had another source of income to assure that mortgages would be paid, families fed, and other obligations met.

There came a point, though, where I accepted a salaried position with a large company, which also offered ample opportunity for paid overtime. The down side, as I later discovered, was extensive travel and excessive "on call" nights that put both my patients and me in jeopardy, because a chronically sleep-deprived nurse working long day after long day and then going out again at night is an accident or a serious mistake waiting to happen. While the money was good, it became clear that I needed to consider other options. What was less clear was what those might be.

At the very least, though, for almost a year I had not needed my side job, a part-time gig with a small, generally unremarkable home healthcare agency. Bottom line: I simply hadn't found time to stop by to resign.

One Friday afternoon my phone rang. It was the administrative assistant at that little agency, urgently seeking a nurse to manage some patients in my service area. At that point I happened to have the time but not the need for more work, with my primary employer offering all the overtime I wanted and at a higher pay rate. "Is the boss in?" I asked. "I'd like to speak with him."

"Sure," she said, and transferred me.

When he picked up the phone and after the usual pleasantries I got down to business: "'Barbara' needs help covering patients. My question is, why should I take any patients for you when I simply can take more with my primary employer, not have to deal with different paperwork or drop-off points, and make three dollars more per visit?"

His immediate response? "If they pay you three I'll pay you five!"

Now, five dollars above my current visit rate was a good deal. "That works," I said. "Transfer me back to Barbara, please, and I'll take some patients."

He did, and I did.

But it all had happened so quickly that I wanted to be sure he remembered and meant what he said. So a few days later while delivering some paperwork I popped into his office, and before I could raise the topic he produced the paperwork for my raise and handed me my copy. Point for him.

It only got better.

As we talked he said, "I want you to be a part of this company. Full-time, part-time, in the office, out in the field - you know I've offered you the Director position many times . . . " Indeed he had, and I acknowledged this with appreciation. It's not the kind of work I want to do any more, but that the opportunity was there certainly was clear. He continued, "In some capacity, I want you here!"

That was gratifying to hear, and I thanked him sincerely and left.

I like to say that it took me two weeks to realize that this was a human male saying, "Tell me what you want so I can give it to you," not a message I was accustomed to hearing!

"I wonder if he means it," I eventually thought. So I sat down, considered what I most would like to do in my work, thought about ways this might add value to that little company, and wrote a proposal.

Back to the boss I went, opening with, "What this company needs is a Home Healthcare Specialist - "

"Absolutely!" he exclaimed, cutting me off . . . and surprising me no end, because there's no such thing! I had made it up, taking my abilities and interests and crafting them into a job I'd like to do. Educated as a Clinical Specialist, I have the qualifications but cannot use that title because I graduated before Advanced Practive Nursing licenses existed and never bothered to grandfather myself. So I had made up a comparable title and tailored it to work I'd like to do in home healthcare.

Without even knowing exactly what it was, the boss signed on, and gave me a modest but not insignificant raise over what my primary employer had been paying me.

That little company was so small and, in my view, so precarious, that I actually kept my other job for awhile, cutting down to "as needed, registry" status, but still employed and so able to go back quickly should that be necessary. Indeed, I wondered if my paychecks for my new position would bounce. (They didn't.)

So there I was, with this new, undefined job and a title that was my own fiction and, as such, meaningless to everyone else. And the question became, How shall I earn my salary?

I considered what patients, doctors, and hospital discharge planners had told me over the years; what I had observed; who had stopped me on the street with what sorts of questions; what seemed to confound the efforts of others trying to do their jobs and what would make things better for them; what problems kept popping up over and over; what assumptions and rituals had been carried forward blindly whether or not they were effective, or as effective as they might be . . . and as ideas emerged I began to formulate a plan. A fanatic about people who are licensed to practice a profession actually doing so, whether or not they have non-clinical responsibilities as well, I continued to see patients while beginning to set other things in motion. That practice led to even more ideas.

People noticed. One of the most talented Physical Therapists I've ever known had signed on with this little company on a part-time basis, it being his "side job" as it once had been mine. Knowing his vision, his insatiable curiosity, his openness to new possibilities, and his phenomenal clinical acumen, I created a "Rehabilitation Specialist" position that was as undefined as my own role, and he came on board full time, too. On a very small scale we began putting specialty service lines and programs in place, and people began noticing even more. Stellar clinicians we had known in our various previous positions began coming on board, and when I realized that many had put their eggs in this basket because of their confidence in me I scrambled particularly hard to create a positive work environment for them, with challenging patients, solid support and respect, and as few dissatisfiers as possible. In this information age there is little need to pull practicing clinicians away from their patients to drive for miles and sit in meetings. "On call" can be managed safely and with minimal imposition. Efforts above and beyond the usual can be recognized and rewarded, and the need for sleep, family time, and simple down time honored and defended. We did all of this, and more.

After decades of working alongside them, my team and I knew some things about what physicians need and what presents problems for them. The same is true for hospital and extended care providers. So we solved some of those problems. We introduced people to clinicians with whom they had worked in the past and assured them that their commitment to being and doing the best had only increased, and had only more support. We had photographs of demonstrated results, and evidence from the literature explaining the scientific bases of our approaches.

And we had fun. The Rehab Specialist, who later became the Director of Rehabilitation Services, and I worked seven days a week . . . because we so chose, because we wouldn't let that patient in the hinterlands go without a nurse or therapist on the weekend, because we took care of our people, because we wanted to deliver a compelling presentation the next day or week or month or all of those, because new ideas and new possibilities had a way of popping into our heads in the wee hours of the morning . . . because we loved our work and knew we were making a positive difference in many, many lives.

That little agency went from being a virtual unknown to being one of the major players in the metropolitan area. We established affiliations with all of the university medical centers in the city and put liaisons on site at each one. And our liaisons were there to serve, not to sell. We focused on making things easier for referring providers and on securing the best possible clinical outcomes for patients. And our agency took off. We chuckled when from time to time we heard our competitors exclaiming the likes of, "What are they doing over there? That place is on fire!"

And it all happened because one day the owner had said to a part-time employee who hadn't even worked for him for the better part of a year, "I want you here in some capacity," allowed me to write my own ticket, and supported what followed, whether actively or simply by getting out of the way.

There's a lesson here.

Deepak Chopra says the best motivation is inspiration. What would happen if we began asking our people what they would like to do to earn their salaries? Truly, that's where it began for me. I needed to go from "in some capacity" to defining what that capacity would be, with an eye to professional satisfaction for myself, to serving in a way that mattered, and to adding sufficient value to my employer to justify my salary.

If instead of writing detailed job descriptions including pages of required qualifications, tasks, and "other duties as assigned" and then forcing people into those roles, what would happen if more people had more opportunities to offer service as they uniquely could, and we watched and we cheered and, when requested or needed, we helped? What would happen if even in an endeavor as serious as healthcare people were free to be a little crazy, and we encouraged rather than stifled that?

WE'D LOSE MONEY! I can hear it now.

But I don't think so. Highly educated, licensed clinicians who have demonstrated skillful execution of their professions for years and who have managed even basic household budgets can be trusted to carry our their work responsibly, including fiscally responsibly. And with freedom to practice and a modicum of sense, there's no need to game the system or manipulate. Imagine the energy that this alone can free up!

Let me tell you about "Camella."

Camella lived with her daughter in a high-rise in Chicago's Cabrini-Green public housing development, and truth be told I don't remember exactly what problem precipitated her hospital stay and subsequent referral to home healthcare. But I do remember the first day I walked into that home. After the usual climb up several flights of dark, smelly stairs, having passed the cadre of drug dealers out front, I entered Camella's apartment and stuck to the floor. Yep, every step I took turned the bottoms of my shoes into suction cups; the floor was that dirty, that sticky. There were flies and probably rodents, and definitely no safe places to set my bag or coat. I piled anything I didn't immediately need onto my police escort, who stood stiffly in the middle of the floor, "stuck" himself and surely not wanting to move too close to any furniture or walls.

Camella was lying on a sagging, urine-soaked mattress, curled tightly in a fetal position, and frail as she appeared, able to let out an ear-splitting cry of "AAAAAAAAA," with the "A" sounding like the "a" in "cat," when anyone so much as approached, much less attempted to touch or move her. She was blind and utterly immobile in that bed, and I quickly discovered that her arms and legs were "frozen" in their curled position. The connective tissue that links muscles and bones and holds them together shortens and becomes very stiff if a person doesn't move, and after awhile it won't move at all, causing joints to become contracted, immobile. This is what had happened to Camella. And when despite her "AAAAAAAA" I moved her enough to examine her I found eighteen pressure ulcers, also known as bedsores, on her body. Some were large and deep enough to encompass my entire hand; some were small and crusted with God-knows-what under those hard and dark covers, and others were at various points in between. In over forty years of practice I never before and never since saw eighteen pressure ulcers on one body at one time. But Camella had them.

On the verge of reporting her daughter to adult protective services for elder abuse, I asked in, the most measured and professional way I could muster, some version of the question, "What the !$%#÷¿%@! have you been doing?!"

And she told me. In a word, her answer came down to, "Trying." And gradually understanding the larger scenario, I couldn't fault that.

There was no place other than that urine-soaked mattress for Camella to sleep. "Jane," her daughter, didn't have enough sheets to change the linens every time Camella urinated, and because the mattress was so wet clean sheets didn't make much difference anyway. Camella couldn't move and wouldn't try, so there was no place to put her even temporarily. Any time Jane attempted to move her, even to change wet clothing, Camella let out that ear-splitting "AAAAAAAAA," so both not wanting to hear that and fearing she somehow was hurting her mother, as much as possible Jane left her alone. Jane had small children in her care as well as her mother, and both her good heart and her frayed nerves clearly were visible.

I put my hackles back down and set to work.

A hospital bed was delivered that day, and diapers and disposable underpads ordered. Steeling myself against the "AAAAAAAAs," I cleaned, measured, and dressed Camella's wounds. I began teaching Jane how to care for them, as well as about Camella's need for good nutrition and to be turned and repositioned frequently, regardless of the sounds such efforts generated. Once clean and repositioned Camella magically was still . . . and content. She admitted that she felt much better, and acknowledged understanding that we needed to continue to do what I just had done.

For reasons I don't understand, the Physical and Occupational Therapists I sent into that home still talk to me today, and boy do they have stories! Shortening the tale, I'll say that Camella learned to sit up and feed herself. We ordered a bedside commode for her, and she learned to move from the bed to the commode by herself, at which point we discovered that she hadn't been uncontrollably incontinent of urine and feces but rather simply had been unable to get to a location where she could eliminate properly. Jane mopped the floor and we stopped sticking to it, and as she cleaned more and more I even came to be able to set down my belongings. The greatest achievement of all, though, was when Camella started walking, after weeks and weeks of screaming "AAAAAAAA" at the therapist from the moment he hit the apartment door through careful efforts to loosen and straighten those contracted extremities, to building enough strength that Camella could bear her own weight. Oh, her posture was bent and she needed help, but indeed, she walked! Eventually she decided that walking was more trouble than it was worth. Being blind she couldn't see where she was going and felt vulnerable, so she opted to stay in her wheelchair, which she learned to wheel around the apartment herself.

It took months, but those eighteen pressure ulcers healed. They were quite a project, as there was no way Camella could sit or lie that her body's weight wasn't on at least some of them, and because the various ulcers were of different sizes, depth, and tissue types, and they had different amounts of drainage, I needed a variety of dressings and bandages to manage them. Day after day after day I made my way past the gangbangers dealing drugs, up the dark and smelly stairs, and into that apartment to tend those wounds, teach Jane how to change bandages when I wasn't there, and manage Camella's care overall. Eventually she healed.

As our time together was coming to an end Christmas also was approaching. Rarely at a loss for words I was struck dumb when Jane presented me with a gift: A beautiful "angel" doll bearing a banner that read, "Peace on Earth." Jane had barely two nickels to rub together, but she had seen that doll in a catalog and knew it was for me. She said that she learned later that there was a "nurse" doll as well and had she known she would have chosen that one. If only I'd had the words to tell her that there is no greater possible honor than being perceived an angel of peace, particularly for someone who looks like me working in a setting that. "Nurse" pales in comparison . . . and in my book "nurse" doesn't pale in the face of much!

Here's the reason for this story: Somewhere along the line my manager said, not unkindly and not telling me to stop what I was doing, "I want to show you something. I know you're saving her life, but look how much money we're losing on this patient!" She handed me pages of the statement from Camella's account.

Medicare reimburses home healthcare by allocating a sum of money to cover up to sixty days of service. There is a lengthy assessment form that the clinician, usually a nurse, admitting a patient to home healthcare must complete, and this determines how much the agency will be paid for serving that patient for the two month period. Diagnoses are considered, of course, with some carrying higher reimbursement than others. Other considerations include how much patients can do for themselves and how much they need help, whether they are blind, short of breath, incontinent, or have ostomies or infusions, and whether they can manage their medications. There are many variables, and once assessed all combined result in a specific payment to the home healthcare agency.

Camella did not have an ostomy or an infusion; beyond that I can't think of many "payment variables" that she didn't have. But I had a sinking feeling that the numbers on that financial statement I was about to review wouldn't be pretty, because there is nothing on the assessment form that takes into consideration the presence of eighteen ulcers that need to be treated. In fact, the form asks if the patient has one ulcer, two, three, or four or more, implying that the money pot is the same for four ulcers as it would be for seven or twelve . . . or eighteen. I couldn't fault the feds, or any of the researchers who did the background work to develop this tool. Who on earth would anticipate that a human being needing care at home would have eighteen pressure ulcers?

So I looked at the first page of that financial statement and saw a nice amount of money that the agency indeed had received for Camella's care. But then I saw all my visits, and all the therapists' visits, all the supplies we had ordered, and all the time that had gone by. Page after page, I looked. And indeed, ultimately the number at the bottom of the "expense" column was far greater than the one at the bottom of the "revenue" column.

But then I looked more closely. The assessment form that determines payment to the agency must be completed every sixty days, and every sixty days a new payment amount is generated. The financial statement in my hands noted only the revenue for the first sixty day period, but expenses were listed for six or eight months. There should have been three to four times the amount of revenue stated, but nothing after the initial payment was noted. This was a working document and not an official record; my guess would be that it was generated for analysis of the very substantial expenses Camella's care had required rather than to evaluate profit vs loss.

I did some quick math. Camella stopped being incontinent and needed less help bathing and dressing, but she still needed some help with everything, she still was blind, and she still had a lot of wounds, not eighteen over time, but always "four or more." The payments to the home healthcare agency following the first sixty day period still would have been substantial, and as Jane learned to change bandages and manage her mother's care the therapists and I visited less frequently. So while revenue may have decreased somewhat, expenses did even more.

On the basis of my quick calculations it was apparent that even with this patient's extreme needs, the home healthcare agency had turned a modest but significant profit. This was possible because the therapists and I managed her care well. We did not make unnecessary visits, we taught her daughter how to care for her, and we ordered only what was needed.

In life one does well by doing good. In business, and in healthcare, that's true, too. If an agency doesn't lose money on the likes of a patient such as Camella, then there aren't too many risks than an inspired clinician might take that would materially jeopardize the financial position of the company. This doesn't give license to being foolish or to failing to think through an idea and its potential consequences, but it does mean that there's room to be a little unconventional, to break out of old molds, to release some control, and to have faith in one's staff, managing from that faith rather than from fear.

There is room for fraud and abuse in the system, and, sadly, those happen every day. But Camella taught me that doing the right thing pays off: After I had picked my way through the dirt and the dangers, providing the needed services, teaching and supporting the family, and trusting enough to ease off and eventually go away when the job is done, the home healthcare agency made money, and I somehow had to reconcile my imperfect self with an image of an angel of peace in a time and a place where peace perhaps was needed most of all.

Coupling the experience with such patients as Camella with later being given the chance to write my own ticket and report to a business owner who didn't even know where I was or what I was doing most of the time but trusted me anyway and had my back, and seeing astoundingly positive outcomes of both types of endeavors I am more convinced every day that we don't need to live in a world where those who serve say, perhaps daring to do so only to themselves, "I love my work but hate my job." Even with seemingly hopeless clinical cases and with seemingly stifling regulatory red tape, health can happen: Healthy patients, healthy organizations, healthy, satisfied, and productive workers.

What would happen if we stopped scheming, cheating, manipulating, and justifying, and instead put one foot in front of the other and took the next right step, and the next one, and the one after that? If we managed patients rightly and well, and if in our organizations we set our people free, delighted in their flight, and assured them a soft landing? What if we stopped being afraid to take risks, whether this meant no longer gaming the system for more money for oneself or one's business, or trusting one another to define what working "in some capacity" best could be for them? What would happen if instead of directing and controlling we asked and listened? What would happen if workers didn't need to do an end run around their employing organizations in order to survive, feel safe, and thrive? What would happen if workers could try out their ideas instead of having them referred to committees, councils, and layers of administrative bureaucracy guaranteed to suck every drop of creativity and life out of them? What would happen if we stopped focusing on "marketing" and started focusing on developing extraordinary products and services? In short, what would happen if we all discovered the reality of

Doing Well By Doing Good?

We Can Do Better

We can do better for our seniors, it isn't hard, it would make a tremendous positive difference in their lives and health, and the savings in healthcare costs would be substantial. Consider this:

"Pablo" had a heart attack. Again.

Two or three years ago he found himself in the ER with excruciating chest pain and shortness of breath, did a lap through the cardiac catheterization lab and ICU, then went to the general cardiac floor and ultimately home and back to his normal life. That's too bad, that latter part, because "normal" for Pablo was a diet of the likes of McDonald's and KFC together with a general disregard for medicine, exercise, and doctors. So now he's had another heart attack and repeated the same process all over again, except, we hope, for the return to his previous "normal" life. Combined, Pablo now has eight stents in his heart, and one foot on the proverbial banana peel.

But this time it seems he was scared straight. Well coached while in the hospital, he could recite his medication regimen almost completely correctly from the first day I saw him at home, he had an overall good sense of what a "heart healthy" diet was, and he knew exactly when he needed to see each of his doctors. He wanted a medication list written in a particular way that made sense to him and would help him manage his pills; I can take direction, and carefully complied with his request. He's done beautifully with his medications ever since. He showed me the cans of vegetables that he had purchased, and with raised eyebrows asked if he had made good choices. Frozen would be better than canned, I explained, but if he carefully rinses the canned products before preparing or eating them he should do fine. He agreed, and has followed through. He has kept his appointments . . . except for the one with me that his missed today, however, I found a tidy note taped to his door telling me that he had needed to go to the hospital to see his cardiologist, whose name he amusingly misspelled. Yes indeed, this time Pablo is making an effort. "I didn't take care of myself before," he has told me, "I eat all the grease."

Looking out the window of his small apartment I understand the temptation. There are not more than five or six feet of clear walking space in his home, but as Pablo shows me where to hang my coat and rolls an old desk chair over to the table so I can sit down he is noticeably short of breath. He feels fine when he's resting, he says, but when he tries to "do anything" he feels "not so good" and needs to rest again. I tell him that this is normal in the early period after a heart attack, and that he should "listen" to his body, resting as soon as he begins to feel tired, and then resuming activity when he feels better. In this way he gradually will be able to do more and more, and won't overtax his healing heart in the process. I tell him he is taking medication that slows his heart and decreases its workload so it can heal, and while this, too, can make him tired, he won't need it forever.

I don't know how Pablo obtained those canned vegetables, as the nearest grocery store is six blocks away. Given that Pablo becomes tired and winded just walking around his little apartment it's hard to imagine him somehow making his way downstairs, outside, and to the store, and then carrying groceries home. But from his apartment I can see McDonald's right across the street, Burger King around the adjacent corner, a fried chicken place, and a number of pizza joints. The heart of a strong Asian community is just a few blocks away, complete with many restaurants that deliver (sodium laden) traditional foods.

And today while I was waiting for the elevator in Pablo's building I glanced over my shoulder and saw these:

Yep, two vending machines full of sugar, salt, and fat. The beverage machine does have one offering of bottled water, which probably is that last thing that the low-income residents of this subsidized senior housing building need, having both little money and running water in their apartments. Otherwise the only options here are nutrient-poor, high risk selections.

It's little wonder Pablo was "noncompliant" after his first heart attack.

"Zelda" is another of my patients who lives in the building. A diabetic with high blood pressure and diseased arteries, she developed a leg wound that wouldn't heal. It became infected, and by the time Zelda went to the ER she had developed gangrene and her leg needed to be amputated above the knee. Now she crashes into walls and furniture just trying to learn to maneuver her wheelchair around her apartment; I can't imagine her managing on the street. Yet, like Pablo, if she is hungry in the middle of the night, or her daughter is delayed bringing groceries, Zelda's only option is to wheel herself to the elevator and ride down to those vending machines.

Sugar, salt, and fat: All addictive, and all exactly what someone with diabetes, high blood pressure, and vascular disease doesn't need.

And there's "Dolly," a somewhat confused little dynamo of a woman who went to the hospital last fall with some gut issues. Those now have resolved, but in the course of her workup a Vitamin B12 deficiency was discovered, and I see Dolly regularly for vitamin injections. These are stored in her refrigerator, and every time I remove the vial I notice that there is precious little food there. There is a lunch program in the building where residents can buy hot lunches five days a week for little more than pocket change, and not only does Dolly like those, but also she seems to have gamed the system such that she often is able to take home "extra food." Her son is attentive and often there; I don't believe he will let her starve. But my sense is strongly that his resources are limited, too, and that Dolly, who needs written reminders posted in order to remember to turn off the water, is unlikely to be able to hop on the bus to go shopping.

Of course, neither are Pablo or Zelda, and, very probably, many of their neighbors.

But there's always those vending machines . . . full of nothing that nourishes, ingredients that heighten health risks, and untold preservatives and other additives and chemicals.

I stood outside the building this afternoon, counted its floors, and did a little quick arithmetic: I'm sure there are over 200 apartments there, each occupied by a low-income senior or couple, most of whom probably have health issues, and all of whom would benefit immeasurably from decent nutrition. Yet apart from the five weekly lunches, a bus or taxi ride to a grocery store, and/or the benevolence of friends or relatives, these seniors' option for meeting a most fundamental need is vending machines full of, to put it kindly, junk.

We can do better.

After visiting Zelda today I stopped by my house to pick up my own lunch and let my dogs out for a few minutes, and in the short time I was there noticed in my own kitchen many options that would be vending machine friendly, nutrient rich, and consistent with most therapeutic diets. Things like these:

In that photo are instant organic oatmeal packets with such additions as nuts, dried fruit, flax, and pumpkin seeds, with no sodium or added sugar. There are small packets of dried fruit and whole grains, the latter having some sodium but reasonable amounts when portioned out correctly. The cans contain sparkling fruit juice.

I can drive, shop, cook, and emerge unscathed from dietary indiscretions more or less unharmed, so I've not made an effort to stock my kitchen with easily prepared nutritious foods. Imagine the collection I could gather if I did!

If vending machines can dispense cold pop and sweetened iced tea, then they can dispense juice, yogurt, cheeses, healthy milks (I prefer almond milk to cow's milk for many reasons, but any milk is better than pop!), and other nutritious selections. Instead of candy and chips they can offer whole, dried, or single-served canned fruits, low sodium single-serve soups, nuts, even small amounts of dark chocolate, and more. If a vending machine can dispense ice cream bars, then it also can hold single-serve packages of frozen vegetables and lean meats. And so forth.

But there's more. Here's the space around the building where Pablo, Zelda, and Dolly live:

There has been maintenance work on the exterior of the building, hence the damaged lawn and remaining construction fences and equipment. But what I see is massive space for residents to plant gardens. Imagine raised beds, with seating among them, both for tired gardeners and for other neighbors who might stop by to chat while enjoying the sunshine.

And look at this:

This is the side of the building, and those long balconies have a direct southern exposure. Picture pots of tomatoes, peppers, herbs,and other crops, with beans and other vines growing on the railings.

In short, the answer to Pablo's, Zelda's, and Dolly's nutrition problems is right where they live: Replace the "junk" in the vending machines with nutritious alternatives, turn much of the lawn into a garden, and put pots on the balconies.

Many years ago I visited "Theda," who suffered from "cardiodiabesity," that is, the combined ill effects of cardiovascular disease, diabetes, and obesity. One day she was thrilled to have three or four large bags of groceries sitting on her table when I arrived, delivered by volunteers from a local charity. However, she asked me to go through them and remove anything she shouldn't eat, explaining that she could give those things to neighbors and wanted to be sure she was having the right things herself. From all those bags I was able to select only a handful of items that would be safe for Theda, and sadly had to advise her to give the rest away. She agreed far more readily than one might have expected, being serious about not doing anything more that could damage her health.

Over the years I've wondered about those volunteers, who no doubt believed they were doing something helpful and good when they delivered those groceries. How helpful it would be if the public health department provided guidelines for food pantries and other charitable organizations and their donors so that better selections could be offered to their clientele, with less waste and fewer health problems down the road.

And what if instead of delivering unhealthy items, some of those volunteers helped people like Pablo, with his fatigue and shortness of breath; Zelda, with only one leg; and Dolly, with a diagnosed nutritional deficit and cognitive limitations as well; what if those volunteers helped such seniors plant and tend their gardens? Churches that collect donations for food pantries might also collect commitments to donate hours for weeding plots and staking tomatoes, and students who need community service hours could pitch in as well, helping with shopping as well as gardening. Of course many residents are robust and would be able to tend their own gardens and help their neighbors, too.

To some extent after his first heart attack Pablo probably didn't fully believe that whether he had a burger at McDonald's or troubled to make his way to the store to buy lean meat and prepare it at home himself made much difference, and McDonald's certainly was easier. Zelda likes her "regular pop, not diet" and is an admitted junk food junkie, but no matter her preferences those nutrient-poor, chemical-rich options are all that's readily available to her. And I wonder if Dolly's nutritional deficit would be as severe if she had regular access to the makings of a well balanced diet.

Everything necessary to effect positive change is right in the neighborhood, and mostly is in that building and on its grounds. Contracts with suppliers for the vending machines would need to be renegotiated, but otherwise much reduces simply to repurposing space and redirecting the efforts of well intended people. This isn't rocket science; it's little more than a matter of awareness, organizing, and enlightening.

We can do this. Solutions to this problem and so many others, or at least ways to make bad situations better, often are contained in the problems and situations themselves. And therein lies the key to how

We Can Do Better.

To Be a Beginner

To be a beginner must be among the most fundamental experiences that a being, human or otherwise, has. To talk, to walk, to ride a bike or ice skate, to drive a car or dance the cha cha, to change a diaper or put a band-aid on a boo-boo, to perform surgery or find and repair a leak in a car's transmission; the things great and small that we learn over the course of a lifetime are myriad beyond counting, and we embark on each as rank beginners. That being the case, one would think we'd become darned good at it, this business of "beginnerhood," of starting anew with something or other and going through variations of the process over and over and over for decade after decade.

Not so, I learned, powerfully, thanks to "Carmen" and the wholly unintended and unrecognized kick in the pants she served up that both shamed and inspired.

As a youngster I'd been part of an experiment to learn what would happen if Spanish was introduced in elementary schools, and from age ten or eleven on memorized dialogs in Spanish, addressed my lily-white midwestern classmates by Spanish names, and wondered what it was about this language that so enchanted my teacher. This was enough to land me in accelerated Spanish classes in high school, but these, too, consisted of little more than slogging through boring text and trying not to be embarrassed by my decidedly uncool instructor. After my sophomore year I opted not to continue, and had no further dealings with the language for the next thirty years.

Then I met "Carmen." A tiny Mexican woman in her mid-nineties, Carmen had been hospitalized with heart disease and diabetes, and while still medically precarious returned to the home she shared with generations of kinfolk. Carmen didn't speak a word of English, but her family was happy to translate. Over time she began offering more and more English words, beginning with "Hello," "'Bye," and Thank you," and progressing to asking about my health, the weather, and other basic small talk. I enjoyed her smiling efforts but otherwise thought little of it, and her family gladly translated my responses.

But one day Carmen was home alone. Her daughter had explained earlier that because of converging needs to deliver children to school, be at work, and meet various other responsibilities no one would be with Carmen that day, but by then Carmen was much improved medically, comfortable with my being in her home, and able to cooperate with an exam even if we couldn't communicate verbally. So Carmen and I went through our ritual of simple small talk, and by then she understood enough English to answer my basic questions, saying she felt "fine" and had "no pain" and was "breathing good." Then I reached for the meter to test her blood sugar level, pricked her finger and ran the test, and happily noted the perfectly normal "104" reading. In so many respects, Carmen had come a long way!

But Carmen pointed to the meter with a questioning look, so I told her it was "good, normal!"

"What number?" she asked, in English!

And I was stymied. Staring at the reading on that screen I struggled to blow thirty year-old cobwebs from my brain and elicit "104" in Spanish. "Cien . . . " I said, the word for "!00" coming to me, " . . . y . . . cuatro," I finished, hesitatingly offering an arithmetic problem in lieu of a direct answer, "one hundred plus four," as my full response.

Carmen broke into a huge smile and she exclaimed, "Cientocuatro!," the correct Spanish word for "104."

"YES!" I exclaimed. And we beamed at one another for both her medical progress and our feat of communication.

It wasn't long, though, before I felt about two inches tall. Here was an exceptionally elderly woman who had been critically ill and was far from stable when first we met, and in the weeks I visited besides accomplishing the substantial task of recovering medically she had learned many English words and phrases, whereas I, who served a city with a huge Hispanic population and once graduated from eighth grade with a medal for excellence in Spanish, remained unable to extract even "cientrocuatro" from my brain.

I enrolled in Beginning I Spanish class the next month, the first of what then was a three-year curriculum (now four). Those were great times. I met people from around the world, some of whom are friends to this day. We went to class on Saturday mornings, weekday evenings, and, ultimately, twice weekly at 6:45 AM, and had a ball. But that Beginning I experience was . . . traumatic.

It was a Saturday morning class, and I fell into a habit of seeing one or two patients in "the projects" early, after which my security escort police officer would drop me off at school. After class I walked back to my car, which was about a mile and a half away where I'd initially met up with the officer, knowing a bus or taxi was an option if necessary, but quite enjoying the walk. And as I walked, I thought. And week after week, without fail, once finally to my car, I unlocked the door, settled into the seat, and burst into tears. "I can't do this. I don't understand it, I'm not learning, I don't get it, it's hopeless, what's wrong with me . . ." You know the routine. Once calm enough to start the engine I'd hear the Spanish station to which I kept the radio tuned, and waves of despair would wash over me once more. "It's just noise, it's all gibberish, I'm stupid." Oh, my, but those were difficult moments!

Fast forward to say I did complete that three year curriculum and more "enrichment" classes as well, loved it all, and learned to speak, read, and write fluently in Spanish. In fact, native speakers tell me I have no accent, which is silly because everyone has an accent of some sort, but I think they mean that I manage not to sound like a gringo. Indeed, one of my most satisfying moments was the sudden realization one day as I sat at her kitchen table bantering in Spanish with a Mexican patient that the conversation felt perfectly natural, without my groping for words, hesitating in conjugating a verb, or feeling self-conscious in the presence of a native speaker. We were just talking, normally, the way people do.

But those sob-fests in my car during my Beginning I Spanish class days proved to be a gift, as I came to realize that what had shaken me to the core was the difficulty of being, and accepting myself as, a beginner. At forty-five years old I had a good measure of experience under my belt and had developed substantial expertise. I was the teacher, the nurse, the resource for colleagues, the idea person who could see ways to solve problems and bridge differences. I could travel all over by myself, buy and sell property, invest money, lecture to audiences of esteemed professionals and leaders across the country, and serve as president, whether by design or default, of seemingly every organization I ever joined. While certainly no paragon of wisdom and virtue, I was accustomed to holding my own in the world quite well, and to a tendency to emerge as a leader whether or not that was something to which I aspired.

That did not sit well with suddenly being unable to say, "My name is Sue, I'm from the United States, and I work as a nurse," . . . in Spanish. Indeed, it probably took me two years to learn to pronounce, "Soy estadounidense" ("I'm from the United States"). But I sure can say it now!

I learned, from my tears and despair, that despite years of unconscious practice, it can be hard, very, agonizingly hard, to be a rank beginner when one is an accomplished middle-aged adult. And that has served me well. Colleagues who take new positions and suddenly find themselves undertaking very different work than they did in the past, new parents, brand-new college graduates thrust abruptly into full adulthood, the newly widowed, even just a new neighbor who has moved into a new home in a strange neighborhood and needs to carve out a new daily routine and find new friends, all of these may find their equilibrium and self-confidence more than a little disrupted by the phenomenon of suddenly becoming a beginner.

A well known career coach in my field noted recently that it can be humbling when everyone around seems to know more than one does oneself. Certainly this is true. We all have looked at others deftly overhauling an engine or flying a plane or manipulating lines and monitors in an Intensive Care Unit . . . or speaking a second language . . . and thought, "Wow!" and felt a little small in their presence. However, I wonder if much of the resistance even to such changes as going to the gym to begin an exercise regimen or learning to cook more "healthy" foods is less about feeling self-conscious around in-shape, athletic sorts strutting about or sophisticated shoppers who move among the exotic offerings at Whole Foods and seem to know exactly what to do with them, and more about the raw discomfort simply of being a beginner, that is, of carrying the Beginning I book or not knowing how to use the machines in the gym or where on earth in the store to find ingredients whose names one can't even pronounce. The discomfort may not be about other people or one's surroundings; instead, it may be a consequence of needing to be an adult starting over, being a beginner.

A few years ago bright and early on New Year's Day I came up behind this gentleman, and his four-legged companion, as we all were doing (not necessarily "running") a 5K. I passed him, but I'll never pass what he represents: Getting out there, starting where one is, and moving forward.

But there's more to it. Even if everyone around is a beginner, too, or one is just as lost as another, as surely we all were in that Beginning I Spanish class so many years ago, the experience of starting over, of being an utter beginner at something brand new, can impact the confidence and self-worth of even the most capable, strong, and accomplished individuals. And but for that Spanish class I don't know that I'd ever have realized it.

So now I put a label on the experience for my students, for colleagues and friends branching out into new endeavors, and, especially, for patients. Indeed, patients may have the roughest gig of all, because their health and capacities are compromised just when they need to learn to do new things (manage a colostomy?! give myself shots?! keep track of all those pills?! change the way I eat, after eating the same way for seventy years?!), and the consequences of their efforts literally could be life or death, and certainly are good versus not-so-good quality of life. It can be important to say, "You're a beginner with this, perhaps the first time you've been such for many, many years. It's a process; be gentle with yourself. (Not lazy and excuse-making; gentle and forward-moving, please!) I'm here to help and guide you; your job is to reach the point of not needing me anymore. But it is a process, and it's normal and ok not to feel on top of it, to feel overwhelmed and incapable, to make mistakes, and even to despair a bit from time to time. You're forty-five or sixty-five or eight-five years old and may not have been a beginner for a many years; give yourself permission to be one now."

No doubt Carmen long since has gone to her Reward; were she still alive she'd be about one hundred fifteen years old today. But her spirit and energy yet live in me, and I remember with gratitude that tiny old woman who helped me to say "cientocuatro" and ultimately to recognize, name, and appreciate what it means simply

To Be a Beginner

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!