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